For months I have been trying to cope with a chronic undiagnosed disease. Trying to mentally and emotionally deal with the unknown disease, not to mention all the suffering I have with the symptoms has taken a toll on me. I am seeing many Drs., searching for the diagnosis. I'm also seeing a therapist for the depression, and anxiety. That's not enough. I need to hear from others like me. Share with me how you are suffering physically, mentally and emotionally. Also, what helps you to cope! All responces will be greatly appreciated. Please Help!

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Lourehha

[This message has been edited by moderator1 (edited 09-28-2002).]

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Dear Denise,
God Bless you for your reply. It helps to know that someone else can relate to how I feel. Your so right, we can't fight unless we know what we are fighting. I've felt so defeated not knowing what to fight, for a lack of diagnosis. Drs can't seem to understand that feeling. Thanks to your reply, I at least know I'm not alone. I will pray for your son, and family. Again, God Bless Lourehha

Lourehha, If it helps to know you are not alone, I've been dealing with not knowing why I have pain for 2 years. I've been to doctor after doctor and have had test after test and still no answers. As if that were not enough, my husband was admitted to the hospital last Thursday am for neurological problems and has had many tests. Everything so far has come back normal. Dr said next test is brain biopsey. This one scares me. He will be 59 in July. I agree with DDekruif. Research as much as you can. My internal medicine doctor hates patients doing that. I asked him if the fact that patients could use the internet to research had made his job easier, thinking if patients were better informed they would know more. He said no it made it harder. Perhaps because patients are asking harder questions. Try and take one day at a time, do only what you feel you can do and rest. I need to get to the hospital to see my husband now, but will look for your posts to see how you are doing. Halley

You are absolutely right in being frustrated. It is OK. It is also OK to go and beat a fence post or hit a pillow or what ever you need to do to help alleviate that frustration. I too have to deal with an unknown DX. I have been dealing with the unknown for over 6 years. At first I went to doc after doctor, had test after test only to be told I am blossoming into something. They don't know what. I have 13 DX from atypical fibromyalgia to rhumatoid arthritis to lupus and yet they aren't sure if I really have any of them. But what I have found after all this time works best for me is acceptance. I have accepted the fact that this is my life. I know look for whatever positive I can find in my life no matter how little it is. I can no longer do the things I love, but I have found new things to love.

SO dont' give up, but don't let it overcome you either. DOnt' let the search rule your life. Get as informed as you can but don't forget to live your life on the way. Good luck on your endevors. Jena

Dear Haley,
God Bless you for taking the time to respond to me, especially in the midst of all the trips you are making to visit with your husband in the hospital. My heart and prayers goes out to you and your husband.
You are right. I have found out the hard way, all of my docs. (which are many) resent internet research. I have tried so many different ways of approach, none to my avail. When I try to tell them how much suffering I have physically, they tell me I need a shrink. When I try to lightly touch on it, they ignore the issue. I was released from one hospital, not being able to stand on my own to feet. Kept overnight, and told there was nothing wrong, only to find out two weeks later from an M.R.I.report that I'd had another stroke. It was to late to treat me then. These days doctors are refusing to give concrete DXS., and people are getting therefore untreated for the causes. I don't understand. The stroke are just one of the many physical problems I'm having because of no DXS. The support from others in the same situations means so much to me and does help. You and your husband can relate, but to others who have never been faced with similar circumstances can't even begin to imagine what its like, or about. I value the advice you have given me. I will pray for the good Lord to guide both you and your husband through your trying times of pain and suffering, and to heal and give you both strength. You're not alone. Please do stay in touch. Again, God Bless Lourehha

Dear Jena, God bless you for your reply. It is very good sound advice, I hadn't thought of before. Because, I've been so wrapped up in trying to get a diagnosis so I can be treated, that I've lost sight of other things around me. My whole life as I knew it has been changed. Now, somehow it is time for me to try to let go of the old and pursue the new. It's difficult to accept, yet not give in. It's all a new challenge to me. From your advice, I can tell that you have been severely suffering also and can relate, or otherwise you wouldn't have gained the wisdom you have in regards to how to cope. I'm so sorry that you are suffering, and my prayers are with you for healing and the answers you need. Keep in touch God Bless lourehha

Dear Denise, Thank you for geting back to me, and for your concern. I've been to Dr. after Dr. Including rheumatologists, cardiologist, and neurologists. My ana and ana titer keeps coming back positive. My anti-dna comes back neg. I have constent vertigo, I can't drive, and I use a wheelchair and walker because of it. I get extremely weak, my legs swell, I'm on blood pressure medicine. I had a bone-marrow test to outrule cancer, then I had a skin biopsy looking for auto- immune disease, nothing thus far has been to any avail. Whatever is wrong with me, is attacking my central nervous system and my vascular system. I was diagnosed as having cerebral vascular disease and a stroke, but no diagnosis as to why, or what's causing the neuro. complications. How is your son doing, Denise? I'm keeping him in my prayers, and praying that the good Lord will guide you to the answers you need for his healing. Keep in touch and God Bless. Lourehha

Dear Denise,
Thanks for getting back to me. I'm real happy to hear how your son has been able to catch up with his schooling. How determined you and your son both were, that's a lot of obstacles to win over. BUT HE MADE IT< AND SO DID MUM ALONG WITH HIM. I'll continue to pray for your family, and especially for your son as he goes through his next upcoming test. Talk to you real soon God Bless Lourehha

i have had a number of symptoms the just keep increasing at one point i was seeing 7 specialists i have been diagnosed with a number of things but they dont explain everything then i got some connective tissue disorder "but it can take years for antibodies to show up" then i still have some doctors asking id im depressed or stressed. ofcourse i am but its due to the not knowing and the disappointments. they diagnose one thing give you the medication and nothing changes. its very frustrating. i'm only 25 and this has been going on for over 6 years.
sorry for ranting
Tumsch

Here's a link to the clinical trials on amyloidosis:
http://clinicaltrials.gov/ct/gui/c/w1r/action/SearchAction?JServSessionIdzone_ct=6vm4t xoiv1&term=amyloidosis&submit=Search

Even if you're not interested in participating in a clinical trial, they provide some background info for when you discuss your child's treatment options with your doctor[s].

Dear Tumsch,
Please don't be sorry for ranting. That's what I'm on the board for. So I can cummunicate with others, who are also suffering from a no Diagnosis. I'm going to give it a made up name and start calling it the No Diagnosis Syndrom. I know exactly how you feel. After many times of vistiting Dr. after Dr., getting my hopes up that they would find out my problem, give me a diagnosis, then treat the illness, that I could get on with my life, I would find that I had only opened another door to disappointment. I went for psych. therapy, hoping they could help me cope with my undiagnosed problems. And, again I was let down by them, because they, of course, said it was all in my head. To my suprise, they have no answeers, unless they see a diagnosis. Back to square one. I tried to tell them I am depressed, because I'm sick and I'm getting no answers, or treatment. Only their walls seemed to hear me.
These things I've told you, to help you know that your not going through everything alone. I'm amazed to find out there are so many people like us suffering from the Undiagnosed syndrom. It has helped me to know I'm not alone, and I hope it helps you to cope.People like us have to stick together and be each others strength, because we are the only ones who knows how it feels, not head shrinks.
I'm so sorry you are faced with this at such a young age. When your 25, and just starting out with making a life for yourself, and this to happen. I know its painful living with the symptoms, not knowing which way to turn, or what to do, but I found it helps me if I can keep my mind busy. Please keep in touch and know that I will keep you in my prayers. God Bless for writing to me Lourehha

DDekruif...where in SD do you live? I am in Brookings..

Hi. I think a few of you posters should go out of your way to rule out one possibility: Lyme Disease. Now, a regular GP isn't going to be able to do this, since most doctors don't really understand these emerging tickborne diseases, and since many Elisa and Western blots either give false negatives or are misread by doctors, you need to find what's known as an LLMD (Lyme-literate MD.) Expect to pay for this... the correct tests run up to $1K, and the doctor's appointment will probably be close to $400... but at least this way you'll be able to rule out Lyme, bartonella, babesiosis, ehrlichiosis and a few other diseases that are routinely misdiagnosed as fibromyalgia, ALS, MS, irritable bowel syndrome, to name only a few. Believe me, it will be worth your money. It took me a year after I first got sick top get a proper diagnosis, and the insurance company probably spent close to half a million dollars on my hospitalization, because their idiot doctors were too dumb to look for an underlying microbial etiology. Thank you, I'll take a bow, because after doing all the research myself I finally dragged my butt off to an LLMD who did in fact diagnose me with Lyme. After two months of doxycycline and three months of amoxicillin (total cost, oh, $500??) I got much better. I'm back on doxy now, but I see the light at the end of the tunnel, and I function on a fully normal level despite a few aches and pains that I hope this round of doxy will wipe out... BTW, Lyme often causes mildly positive ANAs that further testing then finds negative for the worst connective disorder/autoimmune diseases. Please, tho, see an LLMD if you're going to get tested. A regular MD is just not good enough. You can always try Lymenet.org if you're interested in learning more about this disease that's been called the "great mimicker." Best to all, Ilona.

Dear ilonaross,
God Bless you for caring to take the time to reply back to me.I really appreciate the information. My son has lymes. Because of it, he had to have a pace maker. It caused him a lot of heart problems. On the 28th of this month, I too Have to have a pace maker put in. I have positive ana and ana titers, however, nothing else shows up for the autoimmune. So, I asked the family Dr. to run a test for lymes. Just like you said, she ran the western block, and it came back neg.
I have been on disability because of all the symptoms I have, and it would be impossible for me to work, so needless to say I'm on and HMO health insurance. I'll have to see if the HMO ins. would cover me seeing a lymes specialist. I hope it does with the imput you have given me. A number of years ago I had been bitten and had a very unusual looking dounut red ring around it. My son told me it looked exactly like the bite he had that it turned out to be lymes. But, when my test came back neg. I dropped the issue. Again God Bless you for this information. I'm happy that it was found for you, so you could have the proper treatment, and I'm sorry that you had to go through all the frustration before getting a diagnosis. My prayers are with you for continued healing Good luck! Lourehha

Well, I think you have your answer to what your problem is. Please go to Lymenet.org and read the posts. There are a lot of good medical links. There are literally hundreds of people who spent years and years unable to get a diagnosis and whose lives were ruined because of incompetent doctors. The good news is that people can get well eventually with long term antibiotics. The Western blot is well, not basically useless, but pretty close to it... in particular because most doctors don't know how to read it. You see, it says that five bands must be positive for REPORTING purposes; that means that five bands must be positive for it to be reported to the CDC (Centers for Disease Control.) That doesn't mean that five bands must be positive for the person to have Lyme Disease, but alas, most doctors don't make this distinction. I personally had three bands positive, two of which can belong to other bacteria, but one of which is specific only to borrelia, which is the spirochete that causes Lyme. Only an LLMD or a patient who's been properly diagnosed would know this. If you had a donut shaped ring, there is no mystery any more to what you have. If you're stuck in an HMO, your path is going to be a little bit harder, because you're going to have to teach the doctors, and for that you'll have to have a few things: knowledge (see Lymenet and study, study, study the links), patience (doctors are not known for openness to innovation, and are unlikely to seek out certain labs just because you say so, so you'll have to persevere) and diplomacy (no doctor likes to be told he doesn't know what he's doing and hasn't kept up to date on the medical journal articles, and that's what you're going to have to keep putting under their noses, over and over again, until they do it right.) I was fortunate enough to have the money to pay for this stuff out of pocket, because my insurance company doctors didn't know anything about it. I remember taking my tests results, which I got through an LLMD, to the HMO doctor, who looked at the results and said he thought they were negative. I almost burst out laughing, because at that point the LLMD had been treating me with antibiotics for several months and for the first time in a long time I was walking around free of arthritic pains and varous other problems. HMOs are fine for some things, but not for others. Please, get on Lymenet and read, because there are other people who don't have much money and they post their stories. Good luck.

Hi Ilonaross,
Thanks ever so much for getting back to me with the additional information. Looks like I have a lot of studying and homework ahead of me, but I know it will be worth it in the end. Hopefully, I then can find a dr. willing to read the information, and work with me on it. I really do appreciate your help. How are feeling. I'm sure foryou it was a miracle to get some one to pay attention to what you where presenting to them, to begin to get the proper care. I will keep you posted. God Bless you for caring enough to supply me with the information. And, I'll be praying for you to continue to get better, and be relieved of your pain. Keep in touch. Again, God Bless Lourehha

Dear Health Board Friends, Hi, Finally I'm back on board with you all. I had to take a little break -- because On the 28th of May I was admitted into the hospital. My cardiologist gave me a pacemaker. It hasn't corrected all the problems. I still have the dizzyness, but it has helped the terrible weakness I had. I'm thankful for that. Strangely enough, my son has Lymes dicease, and four years ago he had to have a pacemaker. I think that Ilonarous is on right track with me. Now, if I can gather enough information and get a Dr. to listen to me. For now, I have to take it easy and rest a lot until the pacemaker seeds itself securily. Keep in touch. I do look forward to checking the board and hearing from you all. It helps keep me going. God Bless Lourehha

Dear Denise, I am so haapy to hear from you, and to know that your son is doing much better. Its such a great feeling to know that the Lord has been honoring our prayers for healing for your son, And, the guideance and strenghth the Lord has been giving you. I thank Him for that.
I'm healing well with my surgery. I'm not near as weak now with having the pacemaker. However, I still get very dizzy and my blood pressure continues to take sudden drops. And, at times I feel like I'm going to pass clear out.
My one Dr. took a look at an M.R.I report. He's sure the the sudden drop in blood pressure and the dizzyiness is coming from nerve damage because of degenerative disc decease. I need surgery done to correct the problem. But, the Dr. said I won't find a neurosurgeon to operaate. It would be very risky. The surgery could paralyize me. or I could die from it.
It's something I will have to live with. I'll never be able to drive again, which scares me. I have to depend on my husband to take me every where I need to go. He's very good about it, but if anything, God forbid, would happen to him I don't know what I would do. My childern live an hour away.
But, I thank the good Lord that finally now I know what's wrong. I continue also to improve fro having the strokes. I was able to plant a few flowers, doing a little bit at a time. During the winter months I thought for sure I won't even be able to do that much. So I've been blessed that there is somethings I can now do a little bit at a time.
Please do stay in touch. I continue to keep your family in my prayers.
God bless, Lourehha

Sorry to hear that there are so many with pain that is ongoing. I too have pain in my body, mostly in my neck and shoulders and upper back. It occurs worse when I don't move much, especially when I sleep-by 5-6:00 am. After getting up and moving around it gets better and sometimes completely clears until I go to bed again. I have vertigo often-no pattern to it and it can be slight off balance feeling to falling to the ground. My MRI came back with a bright spot in the area where MS usually attacks. My ANA test was negative. Lymes was negative, but I now think I will look into this Lymenet.org to check on more. Thanks for the info. The other main problem I have is itching skin with no rash. Mostly on the bottom of my feet! I also feel sick a lot-not to my stomach, but like I might have a blood disease or something, a general ill feeling and sleep is about the only thing that helps this. I usually feel better after sleeping for an hour or two, as long as I don't sleep till I start hurting.
My wife is also having an unexplained brain swelling that we are about to go to the Cleveland Clinic to get a second opinion about. Doc thinks it is Vasculitis, probably caused by Lupus or Behcets. And I have a 7 yr old son with type 1 diabetes. Talk about stress and feeling down! I am soo scared of losing my wife to this and having something myself that makes it hard to work with most days trying to make a living. I'm even starting to tarnish my Christian appearance to others with my negative reports and my language control with all of the stress at work. I hope there is something to this Lymes thing--It would at least be curable that way!
Please pray for us, I will be praying for all of your needs as well... and thanks again for posting here, I think it will help a lot of people to vent here and share possible cures! I'll be watching for further posts here. God Bless.



[This message has been edited by moderator3 (edited 06-21-2002).]

Reading all your posts really helped me and my husband; it's a good feeling to know you're not alone with this kind of thing. He's been coming down with symptoms since January and now they've gotten so bad he's gone from being a healthy 30 year old marathon runner to someone who can't shower by himself. They've done test after test and nothing shows up on paper except that now he's developed a rather painful heart condition. If it wasn't for this, I don't believe they'd even take him seriously. He was recently put in the hospital where they ran even more tests and they assigned him a new infectious disease dr (along with 7 others) who basically told him that there was nothing in his blood and this means there's nothing wrong with him! After that, I called his first ID dr and he's going to be taking over from now on- so far all he can say is "it has to be a virus of some form" but one they have yet to identify. I completely understand what everyone is talking about here- you feel so incredibly helpless. I'm watching my husband go from Superman to a cripple in constant pain and there's nothing I can do but watch.

We have yet to rule out Lyme- they've done three different tests for it and all came up negative, but I hear that isn't uncommon. He has arthritic pain in every joint, swelling where the joints get red and hot to the touch, muscle pain/weakness, numbness, stiffness, he's lost 10 lbs in the last month, headaches, difficulty breathing, rash that comes up at different times and in different places; like a light red lacy look, heart murmur/irregular heart condition that wasn't there before last week, fatigue, mild fever, mouth sores, night sweats, nausea- and there are more. If anyone knows of any viruses in addition to Lyme, PLEASE let me know and hang in there yourselves- I'll be thinking good thoughts for all of you.

Jeni



[This message has been edited by JeniR (edited 06-21-2002).]

Jeni: Would you please, please PLEASE go to Lymenet and read some posts, and maybe post your experiences? In particular, you need to find out exactly what the ducks mean when they say "negative." Yes, it's very common for false negatives, and it's also very common for one or two bands to be positive and for the ducks to misread them. The symptoms you describe are classic, CLASSIC CLASSIC Lyme. Please go to Lymenet and read. Ilona.

LATE AND CHRONIC LYME DISEASE
Sam T. Donta, MD*
* Professor of Medicine, Divisions of Infectious Disease and BioMolecular Medicine
Director, Lyme Disease Unit
Boston University Medical Center, Boston, Massachusetts
INTRODUCTION
Following the introduction of Borrelia burgdorferi into the skin by an infected tick, the organisms begin to spread both locally and systemically. Several days typically elapse before the appearance of the first sign of infection, i.e. erythema chronicum migrans (ECM), or other less typical rashes (29). The rash occurs in fewer than 50% of patients with Lyme Disease (8,10), but the true incidence of Lyme Disease in the absence of a rash is unknown.
The occurence of multiple rashes is indicative of systemic spread of the organisms. Multiple rashes usually do not occur until 2-4 weeks following the initial tick bite. This is the same time period during which the organisms are being disseminated to their target tissues and cells. The incidence of multiple rashes was initially reported to occur in as many as 50% of cases, but has been much less common in the last two decades, probably because of frequent use of antibiotics.
Approximately 4-6 weeks following the tick bite, the first systemic symptoms (other than multiple rashes) occur in some patients, usually in the form of "flu" (15). These symptoms include sore throat, severe headaches and neck aches, and severe fatigue. Rhinitis, sinusitis, and cough are not usually present, distinguishing this "flu" from other influenza-like illnesses. While the Lyme-flu symptoms can spontaneously resolve, patients can experience recurrent "flu".
Soon after the onset of Lyme-flu, fatigue, arthralgias and/or myalgias may begin. The arthralgias appear to primarily involve the large joints (i.e. knees, elbows, hips, shoulders), although smaller joints (e.g. wrists, hands, fingers, toes) may be involved (29). Some patients may have actual arthritis, often oligoarticular, more frequently in men than in women. Earlier estimates were that 50-75% of patients who developed late Lyme Disease had arthritis, but more recent analyses suggest that the incidence of actual arthritis in patients with late or chronic disease is closer to 25% (33). Neck stiffness is common. The pains are described as severe, jumping from joint to joint, and may be present for only short periods of time. Pain in the teeth or in the temporal-mandibular joints is not uncommon. Rib and chest pains occur frequently, leading some patients to seek care in emergency rooms and urgent care centers for evaluation of possible cardiac disease. Frequently as well are paresthesias such as burning, numbness and tingling, and itching. Some patients experience crawling sensations, vibrations, or electric shock-like sensations. Rarely is there any actual palsy of the affected areas, making this much more of a neurosensory, rather than a motor, disease.
In addition to paresthesias, purely neurological symptoms and signs include headaches, an aseptic meningitis, facial nerve (Bell's) palsy, and encephalitis or encephalopathy that may be manifested by cognitive dysfunction, especially short-term memory loss, and psychiatric symptoms such as panic, anxiety, or depression (14). The aseptic meningitis and Bell's palsy tend to occur within the first few months following the tick bite, but may also occur as part of reactivation disease (9).
Other symptoms may include fevers (usually low grade, but may be high), sweats (which may be severe), visual dysfunction (described primarily as blurriness, but can include optic neuritis or uveitis), tinnitus, sensitivity to sounds, or hearing loss. Shortness of breath, palpitations and/or tachycardia, abdominal pains, diarrhea or irritable bowel, testicular or pelvic pain, urinary frequency or urgency, dysequilibrium, and tremors are also common symptoms. Some of the dysautonomia symptoms can be disabling. Rarer symptoms may relate to panniculitis and hepatitis. Rarely as well are congenital and intrautero infection; when this occurs, it appears to be similar to toxoplasmosis and rubella, i.e. a primary infection during the first trimester. The occurrence of optic neuritis or uveitis raises other possibilities such as multiple sclerosis, but can be part of Lyme Disease.
The course of the disease can best be described as persistent, but with periods of worsening symptoms, often cyclical every few weeks or monthly. Especially disconcerting are persistent symptoms such as headaches and fatigue that can be exhausting. Some patients are more symptomatic than are others, which may reflect genetically-determined differences in responsiveness or extent of infection. The disease does not appear to be progressive or destructive, as with cancer, nor is it fatal, but can be very debilitating.
The incidence of asymptomatic infection has not been adequately delineated. There appear to be substantial numbers of patients who remain asymptomatic, but reactivate their disease a number of months or years later, following trauma, pregnancy, a medical illness for which an antibiotic is prescribed, or other stresses, including psychological stresses (9). The Lyme OspA vaccine has appeared to reactivate Lyme Disease in a number of individuals who knew, but some who did not know, they had prior Lyme Disease (11). The mechanisms responsible for the reactivation of the disease have not been defined, but may include both molecular mimicry and underlying infection.
PATHOGENESIS
The pathogenesis of Lyme Disease remains to be defined. From the available studies, it would appear that the organisms are trophic for either the endothelial cells of the blood vessels that serve the nervous system or for the glial or neural cells themselves (4,24,26,31). Accumulating evidence supports the hypothesis of a persistent infection as the cause of the persisting or relapsing symptoms (26,31). Whether molecular mimicry is involved in the pathogenesis of some of the symptoms remains more speculative (18). Although arthritis can occur in Lyme Disease, the organisms can only rarely be found in synovial tissue. And as many of the arthralgias that occur in the disease do not respond well to antiinflammatory agents, the disease is more of an infectious neuropathy than an actual invasion of synovial or bursal tissues.
DIAGNOSIS
The diagnosis rests heavily on the clinical symptomatology. When there are clinical signs, e.g. rash, aseptic meningitis, optic neuritis, arthritis, an appropriate differential diagnosis must be pursued. On a clinical basis, "chronic fatigue syndrome" or "fibromyalgia" cannot be readily distinguished from chronic Lyme Disease. Indeed, accumulating experience suggests that Lyme Disease may be a frequent cause of fibromyalgia or chronic fatigue (8,12). Other microbes have been proposed as causative agents of multisymptom disorders that are being termed chronic fatigue and fibromyalgia, especially more recently recognized mycoplasma species such as M.fermentans and M.genitalium, but definitive proof of cause and effect has not yet been established (6, 23).
There has been an attempt to separate “late” Lyme Disease from “chronic” Lyme Disease, the former being manifested by objective signs of arthritis or neurological disease (32). Some have denied the existence of chronic disease, inferring that these patients suffer from psychiatric disorders; some have used the term “chronic” to mean post-treatment disease (“post-Lyme”), assuming that the infection has been treated, and the remaining symptoms are in the same realm as those patients who have “fibromyalgia” or “chronic fatigue” (27, 30). These assertions are speculative and remain unproven. That chronic Lyme Disease actually exists, and is likely the most common form of the disease, is supported by epidemiologic studies demonstrating that 30-50-% of treated and untreated patients go on to develop a multisymptom disorder typical of, and indistinguishable from, fibromyalgia and chronic fatigue (1, 28). As with other multisymptom disorders, chronic Lyme Disease is a clinical syndrome consisting of fatigue, arthralgias and myalgias, and other nervous system dysfunction (7). Furthermore, the results of treatment studies appear to support the hypothesis that persistent infection is responsible for the chronic symptoms. It is likely that Lyme Disease will serve as a useful model for other chronic multisymptom disorders. Whether the pathogenesis of “late” Lyme Disease differs from that of the chronic form of the disease remains to be established.
Routine laboratory tests are usually normal in Lyme Disease. The ESR is most often normal, distinguishing it from some of the inflammatory disorders such as rheumatoid arthritis or lupus. Culture of the borrelia is possible early in the disease, usually from biopsies of the erythema migrans rash; however, most laboratories are not capable of culturing the organisms.
The only currently available useful laboratory tests are the immunologically-based ELISA and Western blot assays. The recommendation was made in 1994 to have a two-tiered testing system in which the Western Blot would only be done on ELISA-positive samples (5). The recommendation was based primarily on the results obtained from patients with arthritis (13), did not take into account the chronic form of the disease, and was made despite the lack of consistent reproducibility of results between various laboratories (2, 16). The ELISA has been shown to be an unreliable test in many patients with Lyme Disease, both in early infection and later disease (8, 10). Part of the reason for the lack of sensitivity of the ELISA is the use of whole organisms, resulting in a high amount of background absorbance. After correction for the high background, only a small percentage of positives can be detected. Because Western blots separate the proteins of the borrelia, specific reactions can be visualized, and more accurate interpretations of the results made. Over 75% of patients with chronic Lyme Disease are negative by ELISA, while positive by Western blot (8, 10). Patients with oligoarticular arthritis may be more likely to have robust IgG responses and positive ELISA tests and IgG Western Blots (13).
By Western blot analyses, the first immunologic reactions in Lyme Disease are to the 41kd flagellar protein, and the 23kd OspC protein. Typically, at the time of the ECM rash, there will be an IgM reaction against the 23kd and 41kd proteins, and no IgG reactions. Within the next few weeks, the IgM reactions persist, sometimes accompanied by less specific reactions against 60kd and 66kd proteins, and IgG reactions are now visible against the 23kd and 41kd proteins. Thus, in the presence of an appropriate clinical picture, the immunoreactivity against the 23kd and 41kd proteins appear to be diagnostic of Lyme Disease.
Whereas the 41kd protein is not unique to B. burgdorferi, the 23kd protein appears to be unique. Also apparently unique proteins of B.burgdorferi are the 31kd (Osp A) and 34kd (Osp B) outer membrane proteins, and the 35kd, 37kd, 39kd, and 83/93kd proteins. Reactions to the 31kd proteins are not usually seen until after a year or more following the onset of disease. Not all patients with symptoms for more than one year, however, display reactions to the outer membrane proteins.
Most symptomatic patients have specific reactions on IgM Western blots (8,10). With resolution of the symptoms, the IgM reactions disappear or attenuate. IgG reactivity may continue to be present with resolution of symptoms, but it typically also disappears or attenuates with successful therapy. There are some patients (20%) who have symptoms, but whose Western blots are negative (8,10). If the borrelial organisms remain intracellular, with no extracellular reemergence once established, this could explain the absence of additional or persistent immune responses.
PCR (Polymerase Chain Reaction) is a highly sensitive means to detect microbial DNA or RNA, and it was hoped that this technique would find an important role in the diagnosis of Lyme Disease. Thus far, however, despite the specificity of this method, borrelial DNA or RNA has not been reliably detected in the blood, urine, or spinal fluid of patients with early or later forms of Lyme Disease, findings again supportive of an intracellular reservoir for the borrelia.
It should be possible to develop a better, highly specific ELISA for Lyme Disease, using recombinant 41kd, 23kd, 31kd and/or 34kd (and perhaps other B.burgdorferi-specific) proteins. Currently, however, the Western blot assay is the most reliable immunologic test.
TREATMENT
In vitro, B. burgdorferi is sensitive to several antibiotics (20,25). This assumption is complicated, however, because of the long incubation times needed to determine minimum inhibitory concentrations (MIC), as the borrelia have doubling times of 20-24 hrs. With these limitations, the results of a few studies show minimum bactericidal concentrations (MBC) to penicillin of 8ug/ml, ampicillin: 2ug/ml, tetracycline: 1-2ug/ml, doxycycline: 2ug/ml, ceftriaxone: 0.5ug/ml, cefotaxime: 0.5ug/ml, cefuroxime: 1-2ug/ml, cefixime: 8ug/ml, erythromycin: 0.5ug/ml, clarithromycin: 0.5ug/ml, azithromycin: 0.5ug/ml, and ciprofloxacin: 4ug/ml.
At the time of the first rash, any one of several antibiotics appear to be effective, if given for 2 weeks, according to several published studies. However, a number of patients so treated developed subsequent symptoms of arthralgias, fatigue, and paresthesias, with positive Western blots, who were then successfully treated with longer courses of antibiotics (8, 10). The recommendation at this time, therefore, is that tetracycline, doxycycline, or amoxicillin be used for 1 month if ECM is the only symptom of Lyme Disease.
Once any other symptoms appear, the treatment of Lyme Disease for only 2-4 weeks is associated with frequent failures and relapses (8, 10). Our initial experience suggested that a 3 month course of tetracycline was associated with a higher success rate (8). In patients with symptoms present for more than six months, the treatment course may need to be more prolonged, or a retreatment course of varying length may be needed. In patients with symptoms for more than a year, 12-18 months may be needed for complete resolution of symptoms. The rationale for a longer treatment course is based on extensive observations (8,10), plus the analogy to the longer treatment courses required for tuberculosis, leprosy, Q fever, and certain fungal diseases. With Lyme Disease, the slow growth rate and metabolic activity of the borrelia would seem to correlate with the need for longer treatment periods.
Once treatment is initiated for patients beyond the earliest signs of infection, their symptoms frequently increase during the first several days, or even for the first several weeks of therapy. For patients with preexisting symptoms of more than a few months, relief of any of their symptoms may not occur until after 4-6 weeks of therapy (8, 10). Typically, there are short periods of relief, followed by relapsing or migrating symptoms; with continued therapy there are longer symptom-free periods. Some arthralgias may require 3 months or more to resolve, and fatigue may be the last symptom to disappear.
The preference for tetracycline evolved because of the large number of failures that were noted in patients who had been on ampicillin and doxycycline. Patients generally had some response to doxycycline, but it was uaually not complete, nor long-lasting. Tetracycline may be more effective than doxycycline simply because of the greater dose, i.e., 100mg of doxycycline twice daily is not equivalent to 500mg of tetracycline three times daily; also, doxycycline is highly protein-bound, compared to tetracycline, which could limit the availability of free drug to diffuse into tissues and cells. Some physicians use doxycycline at doses of 300-400mg daily to try to achieve a successful result. A strict comparison between doxycycline and tetracycline has not yet been made. Minocycline has also been used by some physicians, with varying success, but faces the same issues of dosage and protein binding.
Of the beta lactams used for the treatment of Lyme Disease, the most efficacious appears to be ceftriaxone. In limited comparitive trials, cefotaxime appears to be equally efficacious, and high-dose IV penicillin may also be effective. In early Lyme Disease, oral amoxicillin is as effective as doxycycline. In later disease, many failures are noted, despite the use of up to 3 grams of amoxicillin daily, with probenicid. Cefixime would also not appear to be effective therapy. Cefuroxime axetil has been evaluated only in the treatment of early Lyme Disease, and appears comparable to doxycycline. Limited reports of its use in later Lyme Disease have not shown it to be efficacious.
The role of the newer macrolides in the treatment of Lyme Disease needs further assessment. Erythromycin has been regarded as ineffective, despite its good in vitro sensitivities. Azithromycin has been reported to be less effective in the treatment of early Lyme Disease than amoxicillin (21). Some physicians use clarithromycin and azithromycin in higher dosages and for longer periods of time, but there have been no reports of greater success with these drugs than with the tetracyclines or beta-lactams. In our experience, all macrolides are effective when combined with a lysosomotropic agent, especially hydroxychloroquine (see below) (10).
In evaluating the possible factors, it would appear that antibiotics that can achieve intracellular concentrations and activity are the most efficacious drugs. The results of studies in Klempner’s laboratory using a tissue culture model of borrelia infection demonstrated that ceftriaxone was incapable of eradicating intracellular organisms (17); similar experiments in Raoult’s laboratory using an endothelial cell model demonstrated that tetracycline and erythromycin were effective, but beta lactam antibiotics were not (3). These results are in line with our experience that the tetracyclines and macrolides achieve the greatest success. In contrast to beta lactams, antibiotics of the tetracycline and macrolide classes are capable of good intracellular penetration. Experience with the macrolide antibiotics has been disappointing, however, when compared with its in vitro activities against the Lyme borreliae, and with the established efficacy of macrolides against other intracellular parasites such as chlamydia, legionella, mycobacterium-avium intracellulare, and toxoplasma. If, though, the Lyme borreliae reside in intracellular vesicles that are acidic, the macrolides’ activity would be sharply decreased at the lower pH. This is in contrast to the tetracyclines, which are active at acid pH; even so, the activity of doxycycline was shown to be further increased by increasing the pH. In a tissue culture model of ehrlichia infection, the use of lysosomotropic agents such as amantidine, NH4Cl, and chloroquine increased the killing of intracellular organisms by doxycycline (22). Based on those studies, and the hypothesis that late Lyme Disease symptoms are due to persisting intracellular infection, we have been successfully treating patients using the combination of a macrolide and hydroxychloroquine (10).
As regards "CNS" disease, there is no evidence that ceftriaxone is more successful than either the tetracyclines or the combination of macrolide and hydroxychloroquine; if our presumption that the pathogenesis of the disease involves the localization of the borrelia to the endothelial cells of the blood vessels serving the nervous system or to glial or neural cells is correct, then one would not need to have a drug that can cross the blood-brain barrier to be effective. Indeed, the tetracyclines can cross the blood-brain barrier to some extent, and were used when initially introduced into clinical medicine for the treatment of meningitis, with some success. Macrolide antibiotics do not cross the blood-brain barrier, but have been effective in treating other CNS infections (eg toxoplasmosis), and in our experience have been effective in reversing the neuropsychiatric symptoms and signs (eg SPECT scans) of Lyme Disease (10). With regard to the issue of bactericidal vs bacteristatic effects, any such effect in vivo has not been demonstrated. Finally, there have been no reports showing any change in antibiotic resistance patterns during the course of treatment. Ultimately, the determination of efficacy of therapy depends on the clinical response.
FUTURE DIRECTIONS
The diagnosis and treatment of Lyme Disease have been hampered by less than adequate diagnostic tests and inadequate comparisons of antibiotic regimens. Specific antigen-based ELISA tests should result in greater specificity, but sensitivity of any tests based on measurements of the host immune response might still be of limited value if the borrelia remain intracellular. Most useful would be the development of tests that can determine the presence and extent of any residual borreliosis. In the therapy of Lyme Disease, double-blind, placebo-controlled and comparitive trials are needed to answer the questions relating to duration and class of antibiotic therapy. The apparent failure of a regimen of one month of IV ceftriaxone, followed by two months or oral doxycyline, to improve the outcomes of patients with chronic Lyme Disease (19) was not surprising, based on prior observations that neither regimen used for a limited duration was capable of yielding patient improvement (8,10,33). Additional trials are needed to evaluate whether longer durations of treatment, using tetracycline itself, or the novel combination of macrolide and lysosomotropic agent, would be proven effective treatments.
REFERENCES
1. Asch ES, Bujak DI, Weiss M, et al. Lyme Disease: an infectious and postinfectious syndrome. J Rheum 21:454-61, 1994.
2. Bakken LL, Case KL, Callister SM, et al. Performance of 45 laboratories participating in a proficiency testing program for Lyme Disease serology. JAMA 268:891-5, 1992.
3. Brouqui P, Bodiga S, and Raoult D. Eucaryotic cells protect Borrelia burgdorferi from the action of penicillin and ceftriaxone but not from the action of doxycycline and erythromycin. Antimicrob Agents Chemother 40:1552-4, 1996.
4. Cadavid D, O’Neill T, Schaefer H, and Pachner AR. Localization of Borrelia burgdorferi in the nervous system and other organs in a nonhuman primate model of Lyme disease. Lab Investigation 80:1043-54, 2000.
5. Centers for Disease Control. Recommendations for test performance and interpretation from the Second National Conference on Serologic Diagnosis of Lyme Disease. MMWR 44:590-1, 1995.
6. Choppa PC, Vojdani A, Tagle C, et al. Multiplex PCR for the detection of Mycoplasma fermentans, M. hominis, and M. penetrans in cell cultures and blood samples of patients with chronic fatigue syndrome. Mol Cell Probes. 12:301-8, 1998.
7. Donta ST. Lyme Disease: A clinical challenge. J Spirochet and Tick Dis 2:50-51, 1995.
8. Donta ST. Tetracycline therapy of chronic Lyme Disease. Clin Infect Dis 25: S52-56, 1997.
9. Donta ST: Reactivation of latent Lyme Disease. X Annual LDF International Conference on Lyme Borreliosis, National Institutes of Health, April 1997.
10.. Donta ST. Treatment of chronic Lyme disease with macrolide antibiotics. In: Program
and abstracts of the VIIIth International Conference on Lyme Borreliosis; June 20-24, 1999; Munich, Germany. Abstract P193.
11. Donta ST: Reactivation of Lyme Disease following OspA vaccine. Int J Antimicrob Agents 17:S116-7, 2001.
12. Donta ST: The existence of chronic Lyme Disease. Current Treatment Options in Infectious Diseases 3:261-2, 2001.
13. Dressler F, Whalen JA, Reinhardt BN and Steere AC. Western blotting in the serodiagnosis of Lyme disease. J Infect Dis 167:392-400, 1993.
14. Fallon B and Nields JA. Lyme disease: a neuropsychiatric illness. Am J Psych 141:1571-83, 1994.
15. Feder HM Jr, Gerber M, and Krause PJ. Early Lyme disease: a flu-like illness without erythema migrans. Pediatrics 91:456-9, 1993.
16. Fister RD, Weymouth LA, McLaughlin JC, et al. Comparative evaluation of three products for the detection of Borrelia burgdorferi antibody in human serum. J Clin Microbiol 37:2834-7, 1989.
17. Georgilis K, Peacocke M, and Klempner MS. Fibroblasts protect the Lyme Disease spirochete, Borrelia burgdorferi, from ceftriaxone in vitro. J Infect Dis166:440-4, 1992.
18. Gross DM, Forsthuber T, Tary-Lehman M, et al. Identification of LFA-1 as a candidate autoantigen in treatment-resistant Lyme arthritis. Science 281:703-6, 1998.
19. Klempner MS, Hu LT, Evans J, et al. Two controlled trials of antibiotic treatment in patients with persistent symptoms and a history of Lyme Disease N Engl J Med. 345: 85-92, 2001.
20. Levin JM, Nelson JA, Segretti J, et al. In vitro susceptibilities of Borrelia burgdorferi to 11 antimicrobial agents. Antimicrob Agents Chemother 37:1444-6, 1993.
21. Luft BJ, Dattwyler RJ, Johnson RC, et al. Azithromycin compared with amoxicillin in the treatment of erythema migrans. A double blind, randomized, controlled trial. Ann Int Med 124:785-91, 1996.
22. Maurin M, Benoliel AM, Bongrand P, and Raoult D. Phagolysosomal alkalinization and the bactericidal effect of antibiotics: the Coxiella burnetii paradigm. J Infect Dis 166:1097-102, 1992.
23. Nicolson GL, and Nicolson NL. Chronic infections as a common etiology for many patients with chronic fatigue syndrome, fibromyalgia, and Gulf War Illness. Intern J Med 1:42-6, 1998.
24. Pachner AR, Delaney E, O'Neill T, and Major E. Inoculation of nonhuman primates with the N40 strain of Borrelia burgdorferi leads to a model of Lyme neuroborreliosis faithful to the human disease. Neurology 45:165-72, 1995.
25. Preac-Mursic V, Wilske B, Schierz G, et al. In vitro and in vivo susceptibility of Borrelia burgdorferi. Eur J Clin Microbiol 6:424-6, 1987.
26. Roberts ED, Bohm RP Jr, Lowrie RC Jr, et al. Pathogenesis of Lyme neuroborreliosis in the Rhesus monkey: the early disseminated and chronic phases of disease in the peripheral nervous system. J Infect Dis 178:722-32, 1998.
27. Seltzer EG, Gerber MA, Carter ML, et al. Long-term outcomes of persons with Lyme disease. JAMA 283:609-616, 2000.
28. Shadick NA, Phillips CB, Logigian EL, et al. The long-term clinical outcomes of Lyme Disease. Ann Intern Med 121:560-7, 1994.
29. Steere AC, Malawista SE, Hardin JA, et al. Erythema chronicum migrans and Lyme arthritis: the enlarging clinical spectrum. Ann Intern Med 86:685-98, 1977.
30. Steere AC. Lyme Disease. NEJM 345:115-25, 2001.
31. Straubinger RK. PCR-based quantification of Borrelia burgdorferi organisms in canine tissues over a 500-day postinfection period. J Clin Microbiology 38:2191-9, 2000.
32. Wormser G, Nadelman RB, Dattwyler RJ, et al. Practice guidelines for the treatment of Lyme disease. Clin Infect Dis 31(S1):S1-S14, 2001.
33. Ziska MH, Donta ST, and Demarest FC. Physician preferences in the diagnosis and treatment of Lyme Disease in the U.S. Infection 23:1-5, 1995.

to all on this page. I am sitting at my computer, it's 11:30 pm and I am crying. I have been dealing with a rare disorder for two years and have lived in pain for 12. I have retroperitoneal fibrosis, scar tissue that is attached to my spine, aorta and kidneys. I have been fighting depression for the better part of the past year because I didn't think anyone else understood what I was going through. Now I know differently. I can't even begin to describe how reading this page has made me feel. Thank you all. tina

Dear Allen B, Forgive me for taking so long to get back to you. But, I wanted to know that I continue to pray for you, your wife, and also your son. My heart ached when I read what all your family is going through. I know that your faith must be shaken by all this. But, God understands that. I'm telling you this from experience. I would get angry and tell God I wouldn't pray anymore cause he wasn't listening.
Then one day it dawned on me, that my suffering could in some small way become a strength for others. With that I found peace within my self, and then the good Lord led me to this website that I could post and begin this topic. I did it to help others, not realizing how much of a help it would be for me. It was an answer to many prayers. That is, I got the help I needed, just to know that I wasn't alone.
I really do know how you feel. And every day I have been praying that God strengthens you, and gives you an inner peace that He loves your family very much.
That He guides you, your wife's, and son's doctors. I know that my prayers will be answered for your family.
Please to get back to me and let me know how you are all doing. I'll be watching for your message. God Bless, and Hang in there. Everything will turn out all right. You'll see Lourehha

Dear Tina, I'm so sorry it took so long for me to respond to your message. I had to stay with my daughter a few days . She has air conditioning, and its been so hot here. My circulation can't take the heat.
I was very touched to read your message. Do you realize how important your message was to let others know that they are not alone, and that you also understand how they feel. I'm so sorry you are suffering, but please don't give up. We all here need you.
I used to think I was worthless because of my disablity, and pain. But it did help me to feel better to know that I could help others know that their not alone.
Know that my heart goes out to you, and I am praying every day that you get relief of your pain and suffering. Sometimes when we cry out to God for help, it seems like He doesn't hear. But while it doesn't seem like He's listening, he's using us to help others to be strong. And it's a good feeling to know that at least something good has come out of our suffering.
Please do stay in touch with me, and drop me a message to let me know how you are doing. I care, and I know the rest here also cares. Just a suggestion, even when I don't feel positive because of the pain I have, it does help me to read some positive literature. Sometimes I even read fuuny cards to make myself laugh. I'll be waiting to hear from you. God Bless, Lourehha

Dear lourehha, I was so glad to hear from you and thank you for your prayers. My faith in God has been the only thing that has kept me going for the last ten years. Like you, I feel there is a greater purpose for all this. My faith has been tested a lot. I had brain surgery when I was 18, married 6 months, then we lost our first baby a year later. My husband has had blocked arteries, and he's only 44, and he also has seizures. Two years ago they thought I had lung cancer and cut me in half to take my lung out. Turned out to be scar tissue. Then I thought I had kidney stones and they found this big mass, thought it was cancer and cut me open again. Luckily, I found a doctor quickly who knew what was wrong and got the diagnosis of retroperitoneal fibrosis. For a long time I wasn't able to go to church because I had stents in both my kidneys (feels like you have a bladder infection all the time) and was on quite a bit of pain medicine. It seemed like every time I would get depressed, God would send me a message through a card someone from church would send or a call or visit. They sent me little gifts all the time and it was just like Christmas! It has been hard dealing with the depression for which I refuse to take any meds, but I have a loving family (three older sisters and my parents, both in thier eighties) not to mention my saint of a husband. My 17 year old daughter has been the only thing that has kept me from swallowing a handful of pain pills. Her sense of humor is extraordinary. My 21 year old daughter just got married and I am going to be a grandmother in a month!People keep asking me how I handle all these things happening to me and I tell them I feel that God gave these burdens to me because He knows I am strong enough to handle it where as someone else might not be. That keeps me strong. I had begun to feel the depression creeping back until I found this web page. I hate to ramble on so but I have felt so alone. No one can truly understand how you feel unless they have experienced chronic illness themselves. I have a sister who has fibromyalgia so she has a better idea what I go through. To know that you and others like you, complete strangers!, are praying for me has helped me get through the last week with a brighter attitude. To top everything off, I have poison ivy all over! So, as I sit here scratching like crazy, I have a feeling this day will be better than the last one, thanks to your kind spirit and loving prayers. God bless you and yours. tina

wow, and i thought i was alone too until i read all these replies. i am 26yrs old and have been ill for two years. i have test results displaying evidence that my immune system is attacking my body but the doctors dont know why! i have major bowel upsets, chronic urinary tract infections, vasculitis, nausea all the time, muscle and joint pain, stinging sensations in my legs, a sleep disorder, and a burning rash that appears around my eye every few weeks or so.
i have seen 3 immunologists, 2 dermatologists, 2 psychiatrists and 1 gastroenterologist and for two years i still have not been diagnosed.
one psychiatrist had the nerve to sit there and tell me its all in my head! wow was i angry not to mention hurt because i am the one who has had to suffer emotionally and physically and tests show that something is going on but because no one can figure out a diagnoses then it's my fault? not knowing whats wrong with you is very hard to cope with and doctors should be able to support me in this instance and not blame me and tell me its all psychosematic. through this whole experience over the past two years i have also lost every hair on my body and i have completely lost my self confidence when i go out in public i feel that everyone is staring at me.
after reading all the replies that are posted here, i feel so much better that i am not alone and from here on, i am going to keep fighting this illness and i am not going to give up until i find out whats wrong with me and then i am going to tackle it head on. god bless you all as you are all in my hearts and wish you all the very best and hope things can only improve from here!
michelle

mish: all that you've mentioned can go along with lyme disease, and usually does. as far as ana tests go, they too are frequently positive, albeit weakly, with lyme disease. i almost died from it, now i'm better, but first i had to get the diagnosis, which was no small feat, since the tests usually show people to be negative and most doctors are ignorant about this emerging disease -- yes, it's down under also. why don't you find an llmd (lyme literate md) and see what he says. if it is lyme, well, you'll start on abx. if it's not, at least you'll have ruled it out. but please don't ask an internist, and for god's sake, please don't believe people who tell you it's in your head. fwiw, every symptom you have, i've had, except for the rash around the eyes. thanx to months of doxycyline, most of them are gone. best, ilona.

Dear Kind Members, I am new to this board so sm uncertain how this works. I was diagnosed with a B 12 deficiency about 7 months ago. I started getting monthly shots. Since then I have gone through many tests to find the reason for the deficiency but every thing turns up normal. I hvae been internally scoped from both ends!My intrinsic factor is normal so they have ruled out Pernicious anemia. But they found an acid stomach. One of my doctors says it proves the beginnings of pernicious anemia the other doctor says that pernicious anemia is about intrinsic factor and that is all.Does any one know if there is something else that would suggest perniciousd anemia.They told me the Schilling test is no longer available and they tested my atrophy(sp) of course all normal. Also does anyone know of another reason for B 12 problems? I have been tested for wheat allegies, Chrons, parasites...Jane Gates

------------------
janegates

ILONA, thanks for your advise. i read all that information on lyme disease but i cant ever remember any tick? did you when you were diagnosed? did you lose your hair too? your reply made me so happy as i feel that i have a break through into my illness. did you get a rash? i get vasculitis and the rash around my eye which basically comes up like a burn and a little bit of eczma. please tell me everything you experienced as i am really intrigued that i have finally found someone who has or had my symptoms.
thankyou so much for your reply as i have a doctors appointment tomorrow and i am going to take all the informatin on lyme disease with me. i will let you know how i go!
thanks again!!!!!! http://www.healthboards.com/ubb/cool.gif

ILONA, i went to see my doctor today and mentioned to him about lymes disease but he said that it does not exist in australia. do you know if this is true?

While these symptoms are gral, there is a defining
physical thing about lymes disease. The "target."

If you have a red rash with another red circle around it, that resembles a target... lymes is the culprit.

Please ask your doctor about lupus. It is common to get facial rashes when exposed to the sun. Furthermore, lupus attacks lots of different parts of your body.

Blue

Hi Lourehha, Remember me. I posted earlier when my husband was in the hospital. We got the diagnosis the end of May. He has Acute Disseminated Encephalomyelitis. ADEM for short. A kin desease of MS. It is very rare and is caused by virus or vacination. His immune system was low because of prednisone he was taking for colitis. He has been in intensive therapy (Physical, Occupational, and Speech. Started out 6 sessions per week and now we are down to 4 sessions. Still don't know when or if he will be able to return to work. He had several tests and the only way they were able to diagnose was by doing a brain biopsy. His symptoms were unstable gait, weakness on right side, numbness/tingling in right had and arm. After being dianosed, he developed shingles on entire right arm which added to the discomfort and recovery process. They first did a CAT scan of brain and thought he had a stroke. The MRI showed more lesions then the one that appeared on the CAT scan. All other tests came back normal. They did blood tests, 2 spinal taps, etc. I listed all of this in case others that read it find a clue. I would imagine the symptoms could be completly different depending on where the lesions were on the brain. I was thrilled to see that you got a pacemaker and were feeling a bit better. Take care and God Bless. Halley

To jgates:

Here's an article on pernicious anemia which lists several causes of VitB 12 deficiency. Often a diagnosis is obtained by ruling out other possibilities.
http://www.nlm.nih.gov/medlineplus/ency/article/000569.htm

As you can read in the article below which describes the Schilling test procedure [last updated Feb, 2002], the Schilling test is available or at least the National Institutes of Health thinks it is.
http://www.nlm.nih.gov/medlineplus/ency/article/003572.htm


[This message has been edited by Jay Tor (edited 07-19-2002).]

to blue,
thanks for your suggestion about lupus. my doctor said i do not have lupus because my ana test came back negetive. i do have have many symptoms of lupus but my immunologist still says no. all my doctors say that they have no idea what is wrong with me except that something is going on with my immune system and we may never actually find out what it is. they are just hoping it will go away and say that there is nothing else that they can do but i am desperately trying to search for an answer. do you have any other advise or suggestions as i am not getting anywhere with my doctors here in australia.
thanks for taking the time to reply.

HI EVERYONE, I missed being able to be here with all of you, but finally I'm back. I was worried that you all would think I had forgotten about you. But that wasn't the case. Instead, I had a relapse and was rushed by ambulance to PRESBY. Hosp. At Presby. the doctors felt I had another stroke, and secondary to my condition of the stroke, they felt I have MS. They gave me a spinal tap while I was there, and it came back negative. They felt I had MS because of the lessions that were on my MRI. Now, we are back to square one again. They also outruled Chairi, but so many of my symptoms sure matched.
They were great with me at PRESBY. They paid close attention to my symptoms, and didn't make me feel like a hypochondriac.
I have fought very hard to get my strength back well enough to return to you all. Please know how much I value my friendship here with each and everyone of you. We all have to be strong for each other. We are survivors no matter what. Right! Knowing we are not alone we can do it, by praying for each other, sharing our tears, and even laughter when we are able.
I'd also at this time like to thank the Health board for allowing me to have this website. I wonder if the HealthBoard is aware how much it has meant to us to be able to all be here for each other.
And my dear friends Halley, Tina and Michelle, I will be getting back to each of you individually in the next few days, as I continue to get a little stronger. Know I was very happy to return home from the hospital to receive your messages, and you are in my prayers.
God Bless you all. Lourehha

[This message has been edited by lourehha (edited 08-08-2002).]

Lourehha, Sorry to hear you've had such a rough time. Glad you are back. What my husband has (ADEM)is a kin to MS. All of his tests came back negative too. Have they suggested a brain biopsy? His treatment was 3 days of intervenous steriods and decreasing dose of prednisone when he got home. He is still in 3 therapies and has not returned to work yet. Write when you have the time and energy. Halley

once again, i urge some of you to go to lymenet and study the messages and literature there. undiagnosed lyme disease can be fatal, although it usually isn't, and people who put their faith blindly in doctors need to remember that a) doctors are not scientists; they're tradespeople, and now they're at the beck and call of other forces b) even if they can resist those forces, and even if they really care about keeping up with the latest science journal articles, which most don't, the number of articles published each month, one of which might contain the information that would be the key to your diagnosis, would eat up all their time and then they wouldn't have time to practice c) only a fraction of the microbial diseases that afflict mankind have been identified, their causes discovered beyond a shadow of a doubt, and a definitive cure on the market. caveat emptor. you have to do literature research yourself. i speak from some experience. in my immediate family i have a thoracic surgeon, an internist, a psychiatrist, a pathologist, and another internist. back to my area of knowledge, lyme and ttp... oh, and by the way, no doctor ever suggested that i see a lyme specialist. despite being laid up in the hospital for two months and in icu part of the time, for that matter, it was my own personal research on the internet and in the literature that led me to seek out an infectious disease expert specializing in tickborne diseases, and finally, i found my diagnosis and at least a partial cure. all the quack quacks who saw me in the hospital assured me i had no infectious disease causing my symptoms. back to some stats on lyme.. only half of all people with lyme have a bullseye rash in the initial stages. i personally had a big bug bite, about twice the size of a mosquito bite, which i attributed to a spider or a horsefly bite, and to this day i have no idea whether it was a so-called "bullseye" rash. if you read the messages on lymenet, you'll see that lesions showing up on the mri, ms-like illnesses and other neuro symptoms are topics that all pop up frequently as red herrings on the way to a lyme diagnosis. as for ana tests, i believe, but i do not know for sure, that a negative lupus test really means you don't have lupus. you would need to do a search for false negatives. yes, there's lyme in australia. just go on the lymenet board and seek out the messages from the posters in australia. however, i'm not sure whether they contracted it in australia. as for testing to rule out lyme, the best, but still not 100 percent sure way, is to have a PCR test at a lab that specializes in Lyme. if you have a western blot, you need to ask the doctor which lab, which bands came back positive, and then you need to know for sure whether those bands are specific to borrelia or not. at the most conservative lab (ie not going overboard on the lyme dx) where i've been tested, quest via stonybrook, band 58 on the igg came back positive, and band 58 is specific only to borrelia. nothing else can cause this band to be positive. other bands came back positive, but they are non-specific. now, don't expect most doctors to know these things. they don't. expect most doctors to say you need five bands positive, because that's what the cdc requires for reporting purposes, if they even say that much, or read the test results that closely. reporting purposes are not the same as diagnostic purposes, but insurance companies like to keep that quiet because long term antibiotic use can run into the hundreds of thousands of dollars. i could go on with more boring details. based on your posts, none of you has really ruled out lyme disease. you may have had more detailed conversations with the md's that you're not posting, but based on the posts here, i am inferring, perhaps incorrectly, that you're all accepting your doctors' words at face value without ascertaining whether you've simply had an elisa test (worthless for lyme) or what bands have come back positive on the western blot and whether they're igg or igm and how sensitive is this particular lab's test for lyme. i suggest you go to lymenet and spend a couple of hours wading through the journal articles they keep archived. it's a lot of work, but you may hit paydirt. best, ilona.

Doctors' Dilemma By Edward L. McNeil MB BS MD
The West Nile Virus is spreading as every day we hear of new cases and people dying from the disease.
It is not the only infectious disease that is spreading and is killing people although it does not kill quickly nor dramatically enough to be considered newsworthy. The health authorities are justifiably worried about cases of BSE (Bovine Spongiform Encephalitis)in cattle and other animals, that has plagued some European countries but has now been identified in the US. BSE is the source of Creutzfeldt-Jakob disease in humans that destroys the brain. Unlike West Nile Virus, it takes many years before symptoms appear at which time there is no effective treatment for it and the patients die.
Other diseases, far more common, spreading rapidly and expected to infect one-half million people within the next few years, come from being bitten by a tick, a mosquito or a flea. They are commonly known as tick-borne diseases, the one most well known being Lyme disease (Borrelia burgdorferi or its variant strain).
When Lyme disease was first recognized in Connecticut, the majority of the victims were infected by a single germ subsequently called Borrelia Burgdorferi, after Dr. Burgdorfer who identified it.
Unfortunately, most of those who have been bitten by a disease-carrying tick can now be infected with more than one disease from a single bite. One is Ehrlichia, another is Borrelia burgdorferi, and Babesia which is a malarial cousin and gives similar symptoms to malaria. The three mentioned organisms are not the only ones that can infect from the same bite, as these organisms depend on the geographical area from which they came. These diseases are not only prevalent in the USA but are found in every European country, Scandinavia, the Balkans and as far away as Australia.
Ticks are great travelers. They can catch a ride on a plane or a bird. They can be carried from one country or continent to another, attaching themselves to humans or their luggage. The disease they carry can be transmitted by blood transfusions and from mother to fetus, an infected fetus more likely to abort and, if born, to be diseased and die at an early age.
The doctors' dilemma is they have been told early treatment with a short course of an antibiotic, usually Doxycycline, will cure Lyme disease. This may appear to be so but such treatment will not guarantee a recurrence will not occur, months or years later, without a further tick bite. This is especially so if more than one pathogen was in the bite.
That is not the only dilemma faced by the doctors because many of the blood tests to indicate Lyme disease are unreliable. A patient with negative results can be told they do not have Lyme disease when they indeed do. Treatment is then denied and the patients sentenced to an advancement of their disease(s) to a chronic form with increasing disability and death. Sadly, it is not unusual for patients to see 10 to 15 different doctors before a diagnosis is made. This is pplicable to both the USA and the UK.
Diagnosis has to be made by taking a complete history of symptoms and physical signs elicited by a thorough examination, especially of the nervous system. For treatment to ameliorate some of the disabling symptoms, a prolonged course of antibiotics is necessary. Such treatments have shown success when prescribed by physicians specializing in the treatment of the tick-borne diseases and who have personally treated more than 5000 cases. Those who consider prolonged courses of antibiotics are harmful do not seem to apply the same judgement to other infectious diseases, such as Tuberculosis or AIDS, or to the use of prolonged courses of antibiotics for young people with acne.
A lot of expensive research is being done regarding what happens at the cellular level in the tick-borne diseases, but until repeatable, accurate tests are available to identify which pathogens are infecting a particular patient, research to show the effectiveness of particular treatments, is futile. Until that time, doctors are justified in diagnosing the tick-borne diseases clinically and empirically, treating with long-term antibiotics, judging the response over months rather than days. Long term exhibition of antibiotics is less likely to cause resistance to the antibiotics than short courses.
After penicillin with the advent of the antibiotic age, many considered we had conquered infectious diseases for good. How wrong they were. Emerging and changing infectious diseases now present an awesome challenge around the planet. In the fight against the harmful germs, we have not begun to win and great losses are to be expected. We may consider humans smart but the microbes have shown themselves to be even smarter in this present age.
[This message has been edited by Lou B (edited 11 August 2002).]

I am new to this message board and as a matter of fact this IS my first time to log on.I just saw my 13th DR. today and have had a rash that has spread over my entire body including now the eye ball itself since Jan 02.I started out with a bad cough 7-01 & various things has happened since then. What they call pantic attacks, waking up 3-4 times a night and empting my bladder, very very weak and tired all the time,chest pains, wheezing.I just had a MRI that shows 2 non-specific leasions on my brain.The CT came back good and an xray of my lung's showed to be good.The dx of my skin rash is Granuloma Annulare.However, when I read about this,it does not fit me.The rash does not look like what is on the net, it is not suppose to be common to the face and scalp & my rash has few bumps to the joints as GA suggest's is the main spot.I will check the Lymenet.org. This was mentioned in the beginning, but I guess blood test ruled it out. I live on the border of Mexico and wierd things seem to happen.I also do not experiance fevers at all. From reading about other people with GA the bumps spread over the years. In 8 months my rash has covered at least 50% of my body. Any help would be appriciated.
Thank you!

Trapped
A prisoner I am, within my very own skin.
A prisoner I am, who may never be able to win.

A prisoner I am who feels the burning, freezing- the strife.
A prisoner I am who had to say goodbye to a normal kid life.

A prisoner I am, oh how tired I have become.
A prisoner I am, for now everything in my life is numb.

A prisoner I am, will I ever be free?
A prisoner I am, I miss the old, fun and energetic me.

A prisoner I am, forced to watch the world through eyes of pain.
A prisoner I am, who must start all over, with what to gain?

A prisoner I am, fighting a losing fight.
A prisoner I am, like a child who cannot sleep through the night.

A prisoner I am, lost in the great furious sea.
A prisoner I am, longing to be pain free.


-Jill


Do You Know Her?

Her life was changed over night,
Her story would start to unfold, nothing went right
Do you know her?

No longer full of energy, no room to be happy,
Everyone was in shock, everyone was so sappy.
Do you know her?

It started as a simple procedure, no need to worry.
They should have seen the doctor was in a rushed hurry.
Do you know her?

He thought she was lying, kids don’t have pain.
He made her feel as if she was going insane.
Do you know her?

No longer able to do the things she used to,
Everything takes her all, everyday she’s always so blue.
Do you know her?

Behind her smiles, behind her tears,
Behind her are, her short pain free and happy years
Do you know her?


-Jill

My Jumbled Thoughts
Star light; star bright, first star I see tonight. I wish I may, I wish I might, I wish my wish will come true tonight. Did you ever stop to think how pointless wishing on a star is? Through the eyes of science, when looking at the sky, you are looking back in time. A star you may have wished upon could already have faded and died, but yet the light has just reached us here on earth. We look up at the night sky in amazement and wonder, but what we really are doing is looking in the past. Looking at stars and comets that have already happened. So really, what you’re doing is looking back on your life and what has happened in a different sense. And when I do so, I can’t see the fifteen years that were happy and pain free. I see the never-ending puzzle that has so many pieces that don’t fit or have been lost. God, it was never supposed to be like this......
...To the man that I hold responsible. I cannot bring myself to hate you, even though that is the one thing I really would love to do. If I saw you lying on the street in need of help, I would help you, no questions asked. However, my forgiveness to you and what you have done is no where to be found at this point in time. Some day, far down the line, I may be able to forgive, but I will never, ever forget how you made my life nothing but a living hell. I’ll never get over it; I’ve only gotten used to it.


A few things that I happened to have in one of my files. I am not the "I"s in any of it but I do know the person who is. Just thought I'd share with some of you.

Hi Tina, I finally made it back. I've been terribly ill again, and that's why I haven't been able to get back to you sooner.
I wish to thak you so much for sharing with us what all you have been put through. And every time I start getting discouraged I read your letter again. I wonder if you truly do realize how everything you have been put through is such a marvelous strength for others. I am so so sorry for all the suffering you have had. And to think your faith remains strong. I'm sure to the Lord you are a Saint. I value our friendship, and thank the Lord for your openess and willingness to share your experiences. Have you ever thought to write a book. I know it would be difficult to do when you are suffering so much, but please do consider it.
The Doctors have now narrowed some of my problems down to MS or CNSvasculitus. Its a matter of determining which to be able to treat it. Plus, lately I've been having more heart problems again. Somehow I have peace and comfort from the Lord, inspite of my own fears. Does that make sense. Perhaps you have experienced what I'm trying to say.
Well, Please keep me posted. I'll be watching for you, and praying for you. God Bless you for posting. You are truly an inspiration. Lourehha

------------------
Lourehha

Dear Michelle, Thank you for sharing with us about yourself. I am so sorry all you are going through, and to think you are so young to be suffering so much. Its difficult for me to imagine. It isn't difficult to imagine, however, what you are going through with the medical community, and the mental health community. You are not Alone, and I hope that it helps for you to know that you're not. I know it did help me to find it out. Don't let any phychiatrist try to convince you, your problems are in your head. Their not. Their real. Of course your depressed. Your physically ill -- that makes you depressed -- it does anyone. It's interesting how psychiatrists expect physically ill people to deal with the unkown, when they themselves can't give any advice, except to try to convince the patient that their problem is in their head. WOW! What you need to do is ask your psych. to give you advice on how to cope with your physical problems. I have been in the process of working on coping skills for my daily living,as I feel my life has been put on hold as I once knew it. One thing that has helped me is to do short term projects my goal right now is to accomplish one a day. Something simple. It does help me if I'm able to keep my mind preoccupied, with something, because I can't think of two things at one time, and during that time I'm not thinking about how much I hurt, or how afraid I am. Try it. Let me know if it helps you. I'll be praying for you. Don't give up. Lourehha

Dear Haley, Thank you so much for letting me know how your husband is coming along and sharing his diagnosis with us so we can learn. Along with my heart condition, doctors are also trying to determin if I have MS, or cnsv, so I have a lot more brain tests coming up. They were sure I had MS, until it didn't show up in my spinal tap. Lately, I have been quite ill and that's why I couldn't get back to you sooner, but I was so happy to hear from you. Please keep me updated when you're able, as I continue to keep you and your husband in my prayers. It was great to hear from you. God Bless Lourehha

Dear Haley, Thank you so much for letting me know how your husband is coming along and sharing his diagnosis with us so we can learn. Along with my heart condition, doctors are also trying to determin if I have MS, or cnsv, so I have a lot more brain tests coming up. They were sure I had MS, until it didn't show up in my spinal tap. Lately, I have been quite ill and that's why I couldn't get back to you sooner, but I was so happy to hear from you. Please keep me updated when you're able, as I continue to keep you and your husband in my prayers. It was great to hear from you. God Bless Lourehha

ilonaross, Thank you for the info you posted on 8-11-02. I used allot of your info and am now on my way to recovery. I am in the late stages of Lymes and the next step of "steriods" which my other doc's had wanted to start me on would have been fatal. I searched lymenet like you had mentioned, checked 34 out of the 38 symptoms and listen to a live interview with a specialist in LD. I flew out to see this doctor immediatly and now somehow these last 8 months of muscle pain, fatigue, confusion & misdiagnosis are all coming together. I am now on my 2nd week of Doxy.

I've invested in a good punching bag. After a day at one of my many doctors I can just go home and cry and wack that bag. LOL I am about to tape all of the names of my medications, doctors, and problems to this bag so I can give it the old 1 2 when I come home in the evening. Lets out some of my anxiety and helps me literally want to beat this thing. Hardest thing to do is to not give up. I am 27 now and the doctors have been working on this since I was 15. Hang in there.
Awkie

I am new to the message board, but I to have had strange symptoms similar to most of yours. Looking back I have probly had symptoms off and on an explained them away. Flu like all the time.
Last Nov. I got sick fever, swollen joints, flu like symtoms and a rash the fatigue was extreme I could not work but half a day sometimes and Ichy skin. I went to the doctor, he said it was something viral. But when the symtoms contiued he sent me to a rhemtologist, Finally he had an idea right off and I wasn't crazy. He tested for the parvo virus b19 human. Never heard of it, nor has anybody else even most doctors I have seen. Comes from children with Fifth desease still not familiar, very little is know. So he treated the symptoms celebrex and tranzodone ( please over look spelling) now bextra. My ana has been borderline. Now it has been almost a year and he is leaning towards lupus. He just gave me a lupus medication to try. I feel for all that I have read. The uncertanty is really a problem, not knowing what to expect next. Every mourning the first thing I notice is what is affected today.
The doctors says I am functional. Well yeh, sometimes, but there are days I can hardly get out of bed. Hope this helps someone.

Hi, I don't know if anyone is viewing this page anymore as it has been a while since the last post.

I too have gone through seeing many doctors about my problems but have no diagnosis as yet and have been through all the psychologist problems etc.

I recently came back from England to Australia with what I thought was a bad case of food poisoning from red meat - have heard all the stories about meat in UK. In a few months I have had fevers, mouth ulcers/shedding of the soft tissue inside the mouth, and general (fatty) tissue loss all over the body but especially around the waistline. I also get pins and needles in my food and hands more easily than before if you know what I mean. Finally I am losing hair off my head in a general pattern of male balding but have no history of balding in my family, and I'm only 22 - there is a weird red mark that "moves" up the scalp as the hair is lost... does anyone know anything or experienced this before..?? I have also had a weird "burning" sensation in my face and it feels like the facial skin is sunburnt at various times and I have developed flaky skin especially around the cheek and eye areas... Can anyone help? My prayers to all of you...

Russell

Just a footnote-

I also have slightly inflamed finger joints and they are curling more than normal with slight pain at times, I am wondering if it possibly is Reiter's syndrome/Reactive Arthritis?

Dear Kathy,

Thank you for joining my disscusion topic Coping. I apologize for not being able to respond to you sooner due to my health. I want you to know how sorry I am that you are suffering. Have you come any closer to getting a diagnosis, and the the help you need. Has your drs. checked out allergies, or deffiencies? They can do a lot. I'm always researching, so if I hear of any other possibilities, I'll be back to you. In the meantime, please do stay with us, keep us posted. I will be praying for you. God Bless Lourehha

Dear Russel,
Thank you so much for joining our discussion Coping. I apologize for taking so long to reply, howevermy illness holds me back sometimes.
Have you been able to get a diagnosis? Also have you been checked for autoimmune disorders. It's just a thought. There are autoimmune disorders that can affect the skin, and hair. Please keep us posted, that we can learn from your experiences.
I'm so sorry that you are suffering, and I will certainly be keeping you in my prayers. God Bless, Lourehha

Dear Sparklinstar,
God Bless you for your response, and submission to Coping. I was reaaly touched by it, and I'm sure other members were also. It sure said better than I, how I have felt ever since a was a small child. And it sure helps me to realize more than ever that I haven't been alone. Ever sice I was a little girl, I have suffered severe pain, and now that I'm older there has been much more of me to go wrong. So how well I can relate to what it is to be that prisoner.
You are a very compassionate person to share this with us. I know that you are suffering also. My prayers for you to have strength and courage, and comfort are with you. God Bless Lourehha

Hi Everyone,
Sorry it's taking me awhile again to get back, due to my illness.
I wanted to share one of my experiences with you.
Back in Sept. I was sent to another neuroliogist.
I went to him in hopes that he could help me, of course. Instead he was veey arrogant, wouldn't even bother to look at my x-rays, or hospital reports. and he charged my insurance company $250.00. I left his office in tears.
My hussband filed a complaint to my Ins. Comp. against him for the way he treated me. He refused to admit his awful behavior. So I took it to a second level complaint. I won the Case!
My insurance company thanked me for having the courage to file the complaint and carry through with it. They said they wish more people would do the same, so insusrance companies could put a stop to the way some drs. are treating patients.
So please, I urge all of you to let your ins. comp. know if you are not being treated properly by your dr. After all you are going there for help, not to be humiliated in any way. And believe me, your insurance company does care!
I now, before I close wish all Of you A Happy and Blessed Thanksgiving! You are all prescious to me. And I feel we are all a strength, and a courage for one another. And with that we are Blessed.
I'll be watching to hear from you all Lourehha

Thank you for the note, Lourehha.

I am still trying to talk my doctor into seeing a rheumie, or immunologist but am facing the usual hurdles - even if the tests are negative, it doesn't hurt to find out, does it?

I hope you are feeling better soon, Lourehha.

Russell

Oh my-

The posts here are heart wrenching- I scanned most of them I just couldn't read them all.

But in my scanning I didn't see any mention of endocrinologist. Don't forget this specialty. I was in your boat until I almost died from my problem. I have Addisons Disease and it can be devistating if not treated. Also one of the PRIMARY symptoms of the disease is depression. Therefore- many with it get tossed into the "mental" problem category which is not the problem. Once treated life becomes normal again. It is rare but I thought I would mention it because when you are at the end of your options you don't want to overlook ANYTHING. Best of luck to everyone.

Dear Awkie, Thank you for posting. I'm sorry I hadn't responded sooner as I had been off for awhile, trying to recoperate. I'm so sorry to hear of how long you have been ill, especially at such a young age. And to think, at age 15 when there's so much to do,for all these problems to begin. and the frustrations of dealing with the medical community.
I like your idea of the punching bag! I sure can relate to it. As many of doctors I'm seeing, none of them seem to know anything of what one another is doing with me. I get told there's nothing wrong with me, even though test after tests shows there's plenty wrong, but the Drs are not taking time to read reports. Now I get copies of my own reports, and I confront them with the results when they tell me there's nothing wrong. Now my drs. are paying more attention to the reports, because they are well aware They'll get confronted again, if I read something abnormal. So far I've had three strokes, and was given a pacemaker. I was also told I have possible M.S. by Presby Drs. While I was told there was nothing wrong with me I ended up having the strokes, and was given the pacemaker.
Recently I turned a complaint into my ins. company over one Dr. who didn't want bothered, not even to read my x-rays. I won the case.
Don't be afraid to speak up to your drs. I use to be afraid, but after being frustrated so long by them and humiliated, I now speak up. They don't always like to hear it. But now I take the first punch back if a dr. is humilating me. I don't wait until I get home to do it. Try it. It works, when drs. find out you read your reports. They'll stop being careless and lax. After all they are getting paid to do a job.
Thank you for not giving up. You are a strength for others to not give up. For all you have been through you deserve to be commended for your courage. My prayers are with you, that your drs. will get it all the puzzel pieces put together, so you can get the help you need.And together we'll stay tough! God Bless, and please do stay in touch with us all.

Dear Ceya, I've been off ill for awhile, so I gadn't had a chance to thank you for posting until now. I do appreciate your responce, as we are all a strength for one another.
I'm so sorry to hear what all you have been through also with doctoring. Has the lupus medication your doctor put you on been helping?
I understand how dificult it is when a dr. says you can get around. It's like if you can make it to their drs. office, they figure you can also work 8 hrs a day. It seems like Drs today have no common sense. Their attitudes frustrate me to no end. Iknow with what you are suffering with, that somedays its all you can do to get yourself dressed, let alone be able to function with normal daily activites.
Know that my prayers are with you. Please keep us posted. What do you do to keep your mind occupied on your down days, when your physically exhausted? It helps me to read positive literature, and I enjoy reading things with humor. Laughter has helped me during my most difficult times, and truly has been a medicine for me, even when I thought I was to sick to laugh. I'll be watching for your next post. God Bless Lourehha

Dear Jill, Thank you for posting on my toppic, Jumbled Thoughts.
Yes, Life is not fair. We are all handed a bad deck of cards at one time another. Some suffer illnesses, some suffer from abuse and disappointment in people they have trusted. Life is cruel.
I believe we can, however, take the terrible things that happens to us, and turn those things into something good, by usiing them to help someone else --to be a strength for someone else. By doing this, it helps ourselves to let go of, instead of holding onto the very things that hurt us most. Thank you for sharing with us. And God Bless, and lead you through your trials and strife. Lourehha

Hi Everyone, Just a quick little note to let you know I'm thinking of you all, and continue to keep you in my prayers. What have you all been doing lately to have a little fun, inspite of your physical pain and discomfort? I've found that on my worse days, if I can find some little thing I can do to keep my mind refocused, it does help. I enjoy playing the violin. It's good eye exercise, because I have a lot of problems with nystagmus (the eyes move by theirselfs).
It's very relaxing. My husband plays with me on his keyboard. Together we just made a Christmas Carol Disk. I was suprised with the accomplishment, considering that somedays I'm to weak to do anything.
Lately I've been concentrating more on mini projects -- things that I can do for perhaps an hour. Then I've been trying to do at least one productive thing a day -- no matter how difficult. It helps me to feel better about myself. Even if its something simple like doing the dishes, or dusting a couple of things off.
Well, if any of you have any suggestions, please share it with us. Be back to you all soon. God Bless Lourehha

hey Lourehha,
This may help, I don't know, but have a look into it.

3 years ago I was diagnosed with Antiphopholipid syndrome (or Hughes syndrome). For years I had been getting unexplained severe pain in my joints, that stopped me walking. The pain got so bad a times, I was admitted to hospital and put on a morphine drip. For years nobody knew what was going on, it was even suggested that I was making it up to get the drugs. Then, a lovely doctor did some blood tests while I was in one of these 'crisis'. He listened to what I had to say, and eventually refered me to another hospital. Unfortuantly I had a stroke before I actually met the new doctor, but as it turned out, it was probably the best thing really. When I did see the new doc, he did more blood work, and diagnosed me with the problem, he told me I had 'sticky blood'. It was a disease related to Lupus. Lupus is also known as the disease which immitates other conditions, so is notoriously difficult to diagnose.

There are specific blood tests for both Lupus and Hughes syndrome, so ask for these tests. It may be the thing you have been looking for. Good luck, and keep strong.
xxxx

hey Lourehha,
This may help, I don't know, but have a look into it.

3 years ago I was diagnosed with Antiphopholipid syndrome (or Hughes syndrome). For years I had been getting unexplained severe pain in my joints, that stopped me walking. The pain got so bad a times, I was admitted to hospital and put on a morphine drip. For years nobody knew what was going on, it was even suggested that I was making it up to get the drugs. Then, a lovely doctor did some blood tests while I was in one of these 'crisis'. He listened to what I had to say, and eventually refered me to another hospital. Unfortuantly I had a stroke before I actually met the new doctor, but as it turned out, it was probably the best thing really. When I did see the new doc, he did more blood work, and diagnosed me with the problem, he told me I had 'sticky blood'. It was a disease related to Lupus. Lupus is also known as the disease which immitates other conditions, so is notoriously difficult to diagnose.

There are specific blood tests for both Lupus and Hughes syndrome, so ask for these tests. It may be the thing you have been looking for. Good luck, and keep strong.
xxxx

hi everyone, its michelle and its been months since i have been on the healthboards and here is what has been happening to me.
my hair had almost completely grown back but then within two weeks, it all fell out again, my sleeping pattern is everywhere and i am exhausted all the time. my bowels are giving me huge problems as sometimes i may only use my bowels once in 3weeks, i am getting alot of nausea all the time, headaches every single day and sometimes miagraines, chest pains that really are concerning me, real bad pains in every part of my body and still chronic urinary tract infections.
it has been 2 and a half years now since i first got sick and doctors still have no idea what it is. i also still get this rash that burns around my eye and blisters every few weeks in the exact same spot. i cannot just sit back and accept my doctors telling me that they dont know whats wrong and hopefully it will just go away by itself and live life as best i can. there has to be something more they can do, surely? i have not been able to work for over 2yrs and spend most of my time in bed or going to the doctors with new symptoms all the time. my immunologist said he will refer me to a neurologist cause he thinks i have neuropathy but also says that there is something going on with my immune system but honestly has no idea. what do you do? i cant keep going on like this, seriously, i am so sick of being sick and the hardest part is not knowing whats wrong. sorry for complaining but i really dont know just how much more i can take! i know that there are many people out there in the same situation, do you find it frustrating? i really do feel for all of you and hope we all get some answers real soon as to what is wrong and how to cope or treat our illnesses.

To everyone in this situation.

When I start to feel overwhelmed and confused, like with dr's and tests, I have gone to seek therapy. I didn't go because I was aggitated and depressed. I went so he/she could help me plan a strategy for my medical malady and what to do/say at dr's appts, etc.
Sometimes the whole thing is just too much for one person to handle (at least for me).

When my therapist asked me what I was there for. I told him to help me get thru this bad medical situation. And that I couldn't handle it all alone.

I also have some rare disorders and get doctors and hospitals that give me the heave ho. But my therapist would help me every two weeks plan on what to say; what to have done; And if that didn't work out I'd be back to tell him and ask "so what should I do now."
The medical people are sooo very difficult to work with esp. when you have a rare or undiagnosed malady.
If your insurance covers you, take advantage of it.

hi there..i am very new here. I am very sorry your so miserable..I dont know physical side but when a person doesn't know it takes it's toll..I am on moriphine and they don't have answers for anything.they found something in my head now and went for second cat scan today and couldn't get dye in my veins..too tiny veins but they gave me no answers as usual.I have chronic pain and am soooo tired of being in the dark..who wants to be around a sick person..last year i was scooting around and thought i was on top of the world..not looking for answers here just want to give you a little comfort...my prayers are with you!!! :angel:

Hi! I can relate to your frustration because i'm in the same boat. Got very sick last fall after a bad reaction to a drug (vasotec). I've seen a neurologist, gastroenterologist, endocrinologist and am now working on the third regular GP. At least he is sending me to a rheumatologist and a dermatologist- but i've been to so many doctors who just plain don't care, that I'm trying not to get too excited by this. It's a catch 22- they won't actually do anything until you have a diagnosis. but they're afraid to do anything that might secure a diagnosis. Then they tell you you're nuts, even when you've been evaluated by a psychiatrist who says that this is not psychosomatic; you have a medical problem, and the doctors aren't doing enough to treat it.
I've had to look up medical information myself to try and figure this out, so now I know about alot of rare diseases. You describe having 2 strokes. Did you have alot of headaches before then, pretty constant, like a rubber band being squeezed around your head? There is a very rare disorder called CNS vasculitis- inflammation of the blood vessels inside the brain and in the whole nervous system. Unfortunately it is very hard to diagnose because many times everything will look normal, blood work and even spinal tap. But it's a possibility to consider when you've already had two strokes and they don't know why- did they see any brain inflammation on the MRI? What I don't get is that your ANA is positive and they're STILL not doing much. In my case, ANA and SED rate are normal, but haptoglobin is high and they don't know what that means. I have all the classic symptoms of vasculitis, but all they look at are lab tests results, not me, and these are for the most part very non specific when it comes to vasculitis. 20% to 40% of people with vasculitis have a normal SED rate, and almost nothing shows up on the blood tests. I explained this to my doctor but he got a little ticked off- they won't do anything but boy will they get mad when you suggest something. Well I've got news for them- I am not crazy and I am not going to stop trying to figure out what this is! You have to keep fighting. But after 2 strokes there is some urgency. Get another opinion. Try the Cleveland Clinic or the John Hopkins Vasculitis Center and get them to look at you. It will be expensive but they are experts and if that is what you have then prednisone can save your life. Keep fighting. I've been in therapy but i'm going to stop. It doesn't help. I can talk about it until i'm blue in the face but it won't do any good until someone actually helps me. If there's no diagnosis for me by next February I am going to one of those 2 places myself- my symptoms suggest Wegeners or Polyarteritis Nodosa and they are both killers, so i'm not going to wait around one of these doctors in my state(Maine) does something!!!Hang in there- it's your body and you're the expert on it regardless of what the doctors say.

I too am battling to get a diagnosis for my daughter. Docs can't find what causes everything.
I'm thinking it could be one of these: Spondyloepiphyseal Dysplasia, Congential;Spondyloepiphyseal Dysplasia Tarda; Dysplasia, Epiphysealis Hemimelica;Roussy Levy Sndrome;or Diastrophic Dysplasia. Anyone heard of any of the diseases.

------------------
ShaBaby

Hi Everyone, This is Lourehha, finally getting back to everyone. Both me and my computer have been down for the count. But, finally we are both up and running again. I'm certainly not well, but some better. I'm so happy to be able to be back to the healthboard again. And, oh how I have missed being able to communicate with you all. I want to thank all of you for your posts, and I do appreciate and welcome all our new healthboard friends.
Through all my illness and symptoms of an undiagmosed illness, the one thing that has helped me the most to remain strong and not give up, is to know I'm not alone fighting my struggles with the medical community. I am talking to more and more people with the same problems with the medical profession.
Some Illnesses are very hard to diagnose, but that's no reason for Drs. to treat a patient like they are just making their symptoms up to get attention.
I have given up on trying to get my own diagnosis because Drs. find that to be very intimadating, and I seem to spin my wheels and get no where by presenting my findings to the drs. So now instead of wasting my energy on looking up frightening diseases that fit my symptoms, I now use what little energy I have on ways to cope with my symptoms. Doctors can't seem to give me the answers on HOW TO COPE. So I'm bound and determined to get these answers
I have discovered that it does help to keep my mind busy, and try not to think about my symptoms. It's not easy when I'm hurting but it does help. Such as sometimes I'm able to play my violin, which I enjoy, that helps me to block my pain. Sometimes, I get involved in watching a good movie, or working on a craft project when I'm up to it, even if it's only for a few minutes at a time.
I've also discovered that there is a lot of help organizations (good people who are willing to help handicap people). I've used my energy construtively studying what all help is available, rather than waste my time anymore on trying to get my own diagnosis.
I hope that all of you will also contribute ideas on how to cope with our everyday living, and also how our illnesses effects our relationships with other people. WE must remember it is difficult for other people we love and care about to understand what we are
going through and how we feel, especially when we have no diagnosis.
I'll be waiting and watching to hear from you all. Each and everyone of you are truly in my prayers.
Be strong and keep the faith. Love to All, Lourehha

Someone please tell me what to do. I have been living with chronic pain since April 2002 and have seen my GP, then an orthopedic surgeon who ordered an MRI on one of my knees(my pain was in both knees, lower back, feet and rear of hips. Then my GP sent me to a rheumatologist who ordered a bone scan and gave me a clean bill and sent me off to a neurologist who said nothing obvious but scheduled a nerve conduction test and MRI of my brain in November 2003. I don't know what your opinions will be on this subject, but I really think whatever is ailing me is SERIOUS. I have too many proofs every day. The things that happen within my body are terrible. I think I deny it to myself too. I just pretend and keep my chin high, because what little time I may have left is crutial. I am SOOOO tired every night. I fall into deep slumber because it is the only thing that keeps my body going. My greatest frustration is that all of this and currently not one DR is performing one test on me. Next one is at the end of October 2003. I well up with tears at the thought of how big my shoulders must be to brave the world. No one that I talk to really knows, they know I hurt but I barely show it. I hurt, why should they watch me hurt. I'm not really sure what I am hoping for by writing this. Hmmmm.... ask the question and the teacher shall appear. Thanks to anyone who took the time to read this.

TinyFrog

Hi Tiny Frog, I am sorry to hear of your suffering. You are not alone. I feel how frustrated you are, and ytour physical pain. But, please be strong and don't give up. Every moment of the day I suffer severe disabling pain. I can't walk very far, so therefore I have to use a wheelchair much of the time, and I have know diagnosis except of my strokes, and I have a pacemaker. They have no answer for all the pain I'm in. I tell you all this to help you to feel better that you are not alone.
Also family and friends can't understand, because they don't feel the pain, and it has no known name. So, we really can't expectpeople in our lives to understand.
One thing that does seem to help me is to keep my mind busy on other things, even if it's just listening to music on my worse days, or working on a puzzle. I've learned to enjoy things that before I got sick I didn't have time to enjoy. My life style has changed tremendously. I can no longer drive a car. It wouldn't be safe. So I stay home a lot, but I've learned to enjoy simple things, and my quite time at home. THis healthboard means a lot to me, just knowing I'm not alone.
I, too, feel I don't have long to live. Along with my pain my health continues to decline. My body is getting weaker, and it doesn't take much until I'm exhausted, and out of breath. I have learned to look at life differently now. I try to enjoy the moments, inspite of my pain, and not think about the future. That way death can not rob me of what life I have left.
I like to read funny things. That helps. Funny cards, jokes in readers digest, ect. I enjoy making my family laugh by sharing with them funny things I read. And when I can make someone laugh I don't feel like I'm such a bore to everyone, that I can contribute something, if it's only to make some one laugh. I also spend a lot of my down time playing cards with my husband, or kismet. That helps me not think about the pain, and helps me keep my mind sharp.
The hardest thing to deal with is the unkown. All of us sufferers of undiagnosed illnesses are soldries fighting an unknown battle. But, to win our battles we have to be strong for one another.
Please stay on board with us, we all that are fighting this battle of the unkown need each other for courage to continue on. YOUR NEEDED! Keep us posted, even if it's just a friendly HI! God Bless, Lourehha

Thanks for responding Lourehha. I don't time to talk, very very very exausted. Wanted to acknowledge your response. You will hear from me again soon.

Tiny Frog

Hello

There have been times, past and present, where I feel I am taking to a fence post, when I am at the doctors office. I think sometimes, I would fare better going to a VET, at these dogs and cats get treated without having to speak to their doctor !

Over the years I have had numerous medical issues, first, I find out as much as I can about what could be causing the specific pain, ache, sensation or reaction I am experiencing.

Not that I am a hypercondriac, but knowing more about your body, in order to explain what is going on, may be helpful... at least for me.

I have had so many "unknown" issues, that have taken weeks, months and many tests to discover the exact problem. Unfortunately, if the doctors had been a bit more capable and willing to listen, I probably would have spent less time wondering what was wrong, and undergoing quality care.

I hope just knowing you are not alone will give you some encouragement.

Lourehha, Hello :wave:

I started reading this post from the begining and here it is a year later. May god bless you lourehha, You have been through so much.

I also have a chronic pain condition that there is no cure for everyday is filled with pain. There are times when I can't wait for night time to come just to get the day over with and go to bed. I also fear the future

I am nothing like the person I use to be. I would give anything to go back and be the healthy energetic me.

Your posts really touched me and I had to write. It has been a long battle for you and I hope that you can somehow get some relief from all your pain.

May God bless you.

((((Gentle Hugs))))
Cattys

Hi CJAY,
Thank you for your words of encouragement. Well said. And it sure does help to know I and so many others are not alone.
I could be wrong, but it seems to me that many doctors don't really care that much if they get a diagnosis because regardless they get paid by the insurance company that is covering the patient. Also it seems like some doctors are scared to death theese days to make any diagnosis because of law suits.
I have been diagnosed with so many Possible illnesses, and not treated for anything except my heart and the strokes, that I've lost track of how many so called possible diagnosis Drs. have given me. If I had them all I would certainly be dead by now.
And, I have spent way to much energy (energy that I can't afford to spend) on worrying about what I really do have.I've lived four years not knowing if my illness is deadly. Now I've just simply come to the conclusion, well I'm still alive, so I don't worry about it so much any more.
I'm sorry to hear that you have also went through similar experiences, but glad to know we are not alone.
God Bless,
Lourehha

Hi Cattys, God Bless you for your reply, and kindness.
I am happy to hear that you have been reading our messages for so long. And I really do appreciate your message.
I'm sorry to hear that you are suffering chronic pain. Has anyone been treating you in any way for it?
I sincerely feel bad for you. Chronic pain changes ones life, and family and friends can't understand, unless they themselves have experienced it, and we can't expect them to, so it does help so much when we find out we are not alone. That there are others who truly do understand.
Do you have any hobby's or anything that you are able to do that doesn't take a lot of physical energy.
It does help. And I'm always open to knew ideas.
Please do stay in touch. I'll keep you in my prayers, along with others on the message board. God Bless, Lourehha

Hi, I just got to read this thread and my thoughts go out to all that are suffering.

My own problems are major but some of you are suffering so much that it puts mine in perspective.

A few years ago I started to get really depressed, this was new to me after 40 odd years on the planet but I coped pretty well. Then the pains and the neuro symptoms started with "foot drop". I woke up one morning and my left ankle just would not work! My Doctor said I must have "slept awkwardly" on it and advised I strap it up. It took about 6 weeks to get back to normal but it did and I thought little more about it.
My depressions got worse and eventually I was sent for brain scans, initially CT but they asked me to go back for MRI. Then the Consultant Psychiatrist looked very serious and explained that there were abnormalities (plaques) which were typical of MS and he sent me to a world class Neurologist. He is excellent, he showed me my scans and those of other patients and it was typical of early MS! He wasn't convinced however because I didn't have any paralysis or stamping gait or any of the other symptoms he would expect.
He started a battery of tests to eliminate things and I now know that I haven't got HIV, Syphylis, Lymes, Parkinsons, Alzheimers, tumors, you name it. The only thing that is positive is that my immune system is causing damage (lesions) to my brain and nervous system, but fortunately not CNS at present.

BTW, until 6 months ago my Company Insurance picked up the tab and I reckon they spent about £50k (or $75k) on private hospital admissions and tests. Not surprisingly they pulled the plug last Xmas but the National Health Service (NHS) has been excellent. My elder Daughter recently qualified in Medicine and she knows how to pull strings, unfortunately she hasn't found any other expert who can help more than Simon (my Neurologist, he wrote the text books she used in her final year so she and I trust he knows what he is doing).

Back to the thread - my pains started in one hand and now affects all 4 limbs. The symptoms of brain disorder are mild, I forget things and get really bad vertigo but otherwise you wouldn't know. Medication is anti-inflammatories and pain killers and that keeps it tolerable but if I miss even a single dose I end up crying with the pain. The pain killers were initially strong opoids but that just kept me in permanent "brain fog" so now I use Codeine (I know that is also opoid) and I can think and operate pretty good.

I just returned to work after 5 months in Hospital, mainly to establish a regime for my depressions as well as more neuro tests, and my employer is trying to sack me! Fortunately I can get good relief, at least for the working day, and have started procedings under the "Disability Discrimination Act (DDA)" to protect my employment but it is hard and it doesn't help my mental state to say the least.

Simon now believes that I have a rare disorder called "cranial vasculitis" in the brain and "mononeuritis multiplex" in the limbs. He admits that these terms are symptoms rather than diagnosis but he has seen similar unexplained auto-immune complexes and is confident that it will either resolve of the bodies own accord or a hefty dose of Cytoxan and Prednisilone will teach it a lesson. I am now waiting for analysis of more brain scans to see if it is progressing or my body is starting to cope.

This has not yet ruined my life but it is close and if it continues despite the best treatment I really don't want to be around to experience the outcome.

My heart goes out to all those who have written here and have unexplained symptoms of pain and depression. If we knew what we were fighting it would be so much easier, there are days when I wish I had MS! at least I would know what to expect.
The only confirmed reason for this condition I can find by my own reasearch is drug abuse, especially intravenous amphetamines, and there are days when I wish I had been there but I haven't and Simon has never accused me. In fact I can't think of anything I could have done to trigger this. If I had HIV I could probably accept that (I'm not perfect!)

I am now resigned to another stay in Hospital to knock out my immune system and hope it comes back behaving normally.

Like I say life is tough at the moment but I can type this OK once the pain killers kick in and I can walk forever when my ankle is behaving. My job will disappear once they find a legal way to dismiss me as I appear an "expensive luxury" on the balance sheet at the moment.

I typed all this because it is therapeutic to converse with others in a similar mess but also it may give hope to some who may be losing it. Keep researching and get the BEST neuro consultant you can, if necessary ask them how many text books they have written!. Then tell him (her) to do their own research, my own has contacted many institutes around the world for the latest news and has incorporated that into his plans for my treatment.

He gives me hope that I will be free of this curse soon, if yours doesn't then find another!

Finally, don't dispair at the "unexplained" bit. Medicine is an evolving science and many conditions have no identifiable cause. The key thing is to research and look for good news stories, that is what keeps me going at present.

I hope to post again with my own good news in September!

Brian

Hi Brian, Not sure if you have the same as my husband or not, but the lesions on brain caused by immune disorder caught my eye. My husband was diagnosed with ADEM (Acute Disseminated Encephamylitis). He had to have many tests and finally a brain biopsy to rule out other causes. He sees a neurologist. Just thought you might want to read up on it. Halley

I have been in remission for a few years now, but from what exactly I don't know. All the doctors know is that it is vaguely related to Wegeners and that it's an auto immune disease.

Anyway, the thing i found harderst is that when people asked 'what's wrong with you' etc, I just couldn't answer. It was so distressing having a 'namless' disease. It was bad enough coping with chemotherapy, steroids, etc etc, without not even knowing what you're fighting against.

Wish you all good health, love B xx

Jean you are absolutely right! I understand how it feels. My Dx's ranged through all those you mentioned and there is still no certainty. One of the "spondyloarthropies" (psoriatic arthiritis, and so on and so forth) I've been told by my rheumy. I am tired of all the nonsense! First it was Methotrexate and I had to take, but that made me ill so he removed cyclamicyn and added plasmoquin to the cocktail. No change. I asked about sulfasalazine and was told "no, too many negative effects". DHEA (now Domidrone) helped a little little. Since my last visit i am now having to take ALL of the above --- methotrexate (10 tabs a week), folic acid, plasmoquin, salazopyrine (4 a day), Vioxx, Zoloft ..... and i feel NO BETTER. So over the weekend I thought i would just toss the lot away - but didn't. Then last night I made the definite decision NOT TO TAKE ANYMORE. None of these meds are helping. I feel as awful as I did before starting (over a year ago) so what's the point of putting more poison into my system? Different story if this toxic Rx was making a difference, but it is NOT. So that's it. I'll try it my way. Eat properly, exercise, stretch, relax, breathe, think positive... pray.
Bless you all. I am still not sure there is certainty about a diagnosis here!!!

ceya - could you have chronic fatigue syndrome? i have it and your symptoms sound all too familiar unfortunately. Usually started by a virus and often overwhelming fatigue that stops you in your tracks, with very grdual improvenemnt. please do a search because it sounds veyr much liek it,
sam xx.

ceya - could you have chronic fatigue syndrome? i have it and your symptoms sound all too familiar unfortunately. Usually started by a virus and often overwhelming fatigue that stops you in your tracks, with very grdual improvenemnt. please do a search because it sounds veyr much liek it,
sam xx.

Thanks for reply. I'll keep looking! Will keep you posted. So far have stayed off the meds (get a little scared at times, in case I take a severe nose dive!) but feel I must persevere. Do you also have loads of aches and pains and no energy (but few occasional short bursts). What else? Best, Romi.xx

my symptoms are:
-extreme fatigue lasting more than 24hours after activity not normally associated with faitgue
-migraines/headaches
-general aches all the time esp my legs
-nausea but that improving atm
-light sensitivity usually worse when i am at low %
-severe noise sensitivity
-neck pain
-cold hands and feet and chilblains
-temp up and down
-occasional sickness
-on and off sore throat
-joint pain esp one knee

it goes on but other ppl also have additional or less symptoms eg
-memory loss
-seizures
-blackouts
-brain fog

diagnosis is Chronic fatigue syndrome and fibromyalgia, hope this helps,s x.

I understand the frustration too. I myself don't have an undiagnosed disease but my husband does. All we know is that he may only live another 10 yrs and he is only 31. All I can say is try to "feel the pain", in other words, don't hide your feelings. Talk to friends or anyone who will listen. I think my husband sees his condition (whatever it is) as a challenge to beat. He has come to know his body and limitations and tries to make himself stronger and healthier in everyother way. Good luck and I hope you are abe to find out what is wrong

BLESS YOU.........


Hi, I just got to read this thread and my thoughts go out to all that are suffering.

My own problems are major but some of you are suffering so much that it puts mine in perspective.

A few years ago I started to get really depressed, this was new to me after 40 odd years on the planet but I coped pretty well. Then the pains and the neuro symptoms started with "foot drop". I woke up one morning and my left ankle just would not work! My Doctor said I must have "slept awkwardly" on it and advised I strap it up. It took about 6 weeks to get back to normal but it did and I thought little more about it.
My depressions got worse and eventually I was sent for brain scans, initially CT but they asked me to go back for MRI. Then the Consultant Psychiatrist looked very serious and explained that there were abnormalities (plaques) which were typical of MS and he sent me to a world class Neurologist. He is excellent, he showed me my scans and those of other patients and it was typical of early MS! He wasn't convinced however because I didn't have any paralysis or stamping gait or any of the other symptoms he would expect.
He started a battery of tests to eliminate things and I now know that I haven't got HIV, Syphylis, Lymes, Parkinsons, Alzheimers, tumors, you name it. The only thing that is positive is that my immune system is causing damage (lesions) to my brain and nervous system, but fortunately not CNS at present.

BTW, until 6 months ago my Company Insurance picked up the tab and I reckon they spent about £50k (or $75k) on private hospital admissions and tests. Not surprisingly they pulled the plug last Xmas but the National Health Service (NHS) has been excellent. My elder Daughter recently qualified in Medicine and she knows how to pull strings, unfortunately she hasn't found any other expert who can help more than Simon (my Neurologist, he wrote the text books she used in her final year so she and I trust he knows what he is doing).

Back to the thread - my pains started in one hand and now affects all 4 limbs. The symptoms of brain disorder are mild, I forget things and get really bad vertigo but otherwise you wouldn't know. Medication is anti-inflammatories and pain killers and that keeps it tolerable but if I miss even a single dose I end up crying with the pain. The pain killers were initially strong opoids but that just kept me in permanent "brain fog" so now I use Codeine (I know that is also opoid) and I can think and operate pretty good.

I just returned to work after 5 months in Hospital, mainly to establish a regime for my depressions as well as more neuro tests, and my employer is trying to sack me! Fortunately I can get good relief, at least for the working day, and have started procedings under the "Disability Discrimination Act (DDA)" to protect my employment but it is hard and it doesn't help my mental state to say the least.

Simon now believes that I have a rare disorder called "cranial vasculitis" in the brain and "mononeuritis multiplex" in the limbs. He admits that these terms are symptoms rather than diagnosis but he has seen similar unexplained auto-immune complexes and is confident that it will either resolve of the bodies own accord or a hefty dose of Cytoxan and Prednisilone will teach it a lesson. I am now waiting for analysis of more brain scans to see if it is progressing or my body is starting to cope.

This has not yet ruined my life but it is close and if it continues despite the best treatment I really don't want to be around to experience the outcome.

My heart goes out to all those who have written here and have unexplained symptoms of pain and depression. If we knew what we were fighting it would be so much easier, there are days when I wish I had MS! at least I would know what to expect.
The only confirmed reason for this condition I can find by my own reasearch is drug abuse, especially intravenous amphetamines, and there are days when I wish I had been there but I haven't and Simon has never accused me. In fact I can't think of anything I could have done to trigger this. If I had HIV I could probably accept that (I'm not perfect!)

I am now resigned to another stay in Hospital to knock out my immune system and hope it comes back behaving normally.

Like I say life is tough at the moment but I can type this OK once the pain killers kick in and I can walk forever when my ankle is behaving. My job will disappear once they find a legal way to dismiss me as I appear an "expensive luxury" on the balance sheet at the moment.

I typed all this because it is therapeutic to converse with others in a similar mess but also it may give hope to some who may be losing it. Keep researching and get the BEST neuro consultant you can, if necessary ask them how many text books they have written!. Then tell him (her) to do their own research, my own has contacted many institutes around the world for the latest news and has incorporated that into his plans for my treatment.

He gives me hope that I will be free of this curse soon, if yours doesn't then find another!

Finally, don't dispair at the "unexplained" bit. Medicine is an evolving science and many conditions have no identifiable cause. The key thing is to research and look for good news stories, that is what keeps me going at present.

I hope to post again with my own good news in September!

Brian

hi, i just had colonoscopy to test for crohns and it came back normal. most people would be overjoyed with this but im so upset becuase i been ill for 18 months and still no answers. gps kept telling me i had ibs but my symptoms dont add up to that and no treatments have worked, ive even been on wheat/dairy free diet but no results. Finally a gp refrred me to the hospital when i burst out crying in pain, she was so mad that i had not been refered ealier as my mum has crohns disease. When i got to the hospital the consultant was so sure i had crohns but the colonoscopy was normal, all my bloods are normal and now he wants to see me in 3months to discharge me.

I feel like giving up. im sick of doctors telling me theres nothing wrong, how can there be nothing wrong when the pain is so bad i cry and cant even move! Ive been tested for every STD, and bowel problem.

my symptoms are lower abdomen pain, chronic lower back pain, severe pain after pooping, nausea and lethargy, also low grade fever.

im at university at the moment and im missing lectures when its realy bad but what else can i do. i have to wait 3 months now till i see the consultant then il be diagnosed and left to deal wit it alone,

i daren't see my gp again but i dont know what to do.

i totally understand how you feel and i think that not having a diagnosis is often much worse than the problem itself

sorry for the vent

carrie xx

I pray... Pray a lot. When I get down, I sit and pray, read my Bible, and it comforts me... ALOT! It help strenghthen me, when I know that God is going to get me through this. Don't mean to sound preacy, but it's true. Hope this helps.

:bouncing: For months I have been trying to cope with a chronic undiagnosed disease. Trying to mentally and emotionally deal with the unknown disease, not to mention all the suffering I have with the symptoms has taken a toll on me. I am seeing many Drs., searching for the diagnosis. I'm also seeing a therapist for the depression, and anxiety. That's not enough. I need to hear from others like me. Share with me how you are suffering physically, mentally and emotionally. Also, what helps you to cope! All responces will be greatly appreciated. Please Help!

------------------
Lourehha

[This message has been edited by moderator1 (edited 09-28-2002).]
:bouncing: I too have been trying to cope with chronic undiagnosed problems. I have been to several Specialist (all fields), and still no Dx for my problems {other than the ones I already have known about} Now i also have become depressed and dont know which way to go next. Why is it so hard to find the Dx , esp.in our world of technology of today. Do you ever feel people are looking at you like they are trying to figure you out or that they have comments about you? Now my Dr. is sending me to a pain management clinic. It even seems like she is tired of all my problems too. I even feel like my family has given up on me also. But what do we do? Pray for miracles and good health! Sometimes i think i will just give up like all the others do when it concerns me and my health. All i want is my life back with at least reasonable health... :confused:

For months I have been trying to cope with a chronic undiagnosed disease. Trying to mentally and emotionally deal with the unknown disease, not to mention all the suffering I have with the symptoms has taken a toll on me. I am seeing many Drs., searching for the diagnosis. I'm also seeing a therapist for the depression, and anxiety. That's not enough. I need to hear from others like me. Share with me how you are suffering physically, mentally and emotionally. Also, what helps you to cope! All responces will be greatly appreciated. Please Help!

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Lourehha

[This message has been edited by moderator1 (edited 09-28-2002).]
I had problems like yours and it was all caused by bacteria in my teeth and gums.The waste these bacteria put off is posion and can affect your whole body.The doctors i went to see never thought about this happening because they are not trained to take care of teeth and it take a good dentist to know for sure if you have any infection or not............Terry

Ive been ill for over a year now and doctors don't know whats wrong. I have been tested for stds, ceoliacs disease, crohns disease. My first symptoms were all stomach and bowel related. then i develped lower back pain which is really bad when it starts. now i have pain in my wrists, knees, fingers and in my legs. Its so painful. I also get strange headaches that leave the left side of my face numba nd my arm too. I also get extrememly exhausted really suddenly and feel like fallig asleep. Im taking probiotics for the tummy and glucosominse sulphate for the joints and back but they arent really helping. Ive been to the doc loads and now i just darent go back becuase my symptoms keep changing im scared he'll think im making it up or attention seeking. I also suffer from depression and this is not helping my depression. At night i feel worse and its affecting my sleep greatly. Im at university and its affecting that too.
I see the GI at the hospital who tested me for crohns in may for the results but he already told me on the day of the colonoscopy that i was clear.
I cant think of anything else to help myself and i pray that i will soon get some answers.

Thankyou for listnening to my rant

carrie

Carrie. I would have never dreamed the bacteria in my gums were makeing me so sick for so long.It would not cost much to get your teeth and gums checked by a dentist that knows alot about the bacteria problem.At least you would know for sure if you had bacteria or not.Think about it.........................Terry

dimeit(terry).It has just been suggested to me by a pharmacogist that I too have mercury amalgam poisoning. Like you, I have been through the Mayo Clinic and innumerable specialists. I had my first 3 fillings removed Monday.My question to you is :what did you experience initially in detox symptoms and how long did they go on?
I would appreciate your reply and I sincerely hope that I have come across a cure for this horrible feeling.
Thanks very much.
AL

Hi Al. Two days after my dentist removed the bacteria infected root canal the pain in my muscles started going away.My right arm had really been hurting and the things i had learned to do over the years to make is feel better were not working.My arm pain improved by its self after the bacteria was removed.Thats when i knew all the things the dentist was telling me about how bad bacteria infections can be on your health was true.I had no bad problems after the tooth was removed,everything just kept getting better.I also had all my mercury filling replaced and under two of them (they had leaked and let infection in ) the dentist found more bacteria growing that did not show up on xrays.Be sure and ask your dentist if he finds any decay under your filling.I know mercury filling have to be bad but the bacteria is 10,000% worse.People that have had there mercury filling romoved and start feeling better tend to think it was the mercury makeing them feel bad but what they dont know is they probley had bacteria under some of them and the dentist cleaned it up too.
One thing i had been doing for two years before my dentist found all the bacteria that really helped me feel better is a thing called Cheleation Treatment.After my Cheleation doctor found out about my tooth bacteria he said the cheleation was pulling out the waste the bacteria was dumping in my body and thats why it was helping.Theres a book called Forty Something For Ever that tells all about what cheleation dose for people.
It took me a good 90 days after getting my teeth fixed to be able to say i was cured.It took that long for my body to clean the posion out.I hope you get well like i did.I have seen two people in my hometown with FMS that are feeling much much better after getting there teeth fixed so i know theres hope.Let me know how you do..........Terry

Terry
I appreciate the quick response.Perhaps because I am 57 and have had the amalgam fillings in my mouth since 1958 I have it even more seriously than you did.My right arm and neck have felt partially paralyzed for 5 years.It is only 2 days since I had the first three removed and ,I presume, the re-activation of my nervous system is just plain wild. Hopefully I am on to something. THe PHD who diagnosed me did tell me that some days would feel like H. He was certainly right,
Thanks again.
AL

Your welcome Al.Cheleation treatment will pull mercury out so you might want to talk to a cheleation doctor.Before i started cheleation i was about to buy a wheel chair because i could not walk 20 feet without unbareable pain.My legs and feet hurt so bad i was ready to have them cut off.The cheleation helped keep me alive long enough to finley find out what was causeing my FMS,CFS/IBD.
Look up Dr Weston Price DDS on the internet.He wrote a book in 1923 talking about tooth bacteria and what it can do to our health,to bad not many belieaved him......................Terry