lamotta, i have a question for you and a response in general to my very brief experiences with lyme and 'standard docs' over the last few months.
Your initial post in this thread stumps me. You tell of your diagnosis, questioning it in comparison to others' symtoms but feeling relieved at having a diagnosis, going on abx and getting no relief whatsoever, discussing this whole scenario with your nurse, being initially angry at the medically community, to ??? what? Where are you at today? How are you dealing with whatever it is that is ailing you and what do you think it is?
Secondly, three and 1/2 years ago I noticed a ringworm like rash, it spread, once went away, but overall, I've had it this whole time in various locations on my body.
My old GP never 'heard' me when I mentioned lyme and I had no reason to push it, just a thought at the time.
The dermatologist that I was refered to for rash told me she KNEW I didn't have lyme - 1 year ago.
The GP I tried on referra from a friend, fresh out of school WAY pooed the lyme theory 3 months ago, and by then I was feeling miserable and scared as by body was under attack for the first time. He convenienently honed in my depression medications... was I taking enough?
The next GP I sought (is a GP to the lyme support leader in my area, we thought he was sympathetic/open and possibly would coordinate with LLMD that wasn't taking new patients) WAY, WAY, honed in on my depression, and told me while looking at the list of symptoms I had given him, 'If I take this list of symptoms out to my waiting room and ask them whether or not they have these symptoms or not, 3/4 of them would say THEY had lyme disease!
He too encouraged me to STAY ON MY 'MEDS' and said without a doubt I had exzema, if i'd take a buttload of oral steroids for two days, that by turkey day, i'll be feeling good as new.
I knew after that, that no matter what, I had to find a LLMD and be tested by a knowledeable lab and at least, rule lyme out. I was not going to re-live the horror stories I had been reading here on the boards and beginning to experience first hand.
The gyn I saw last week (recently moved here from AZ) was absolutely positive that I should be able to walk into any Infection Disease doc's office and be treated with the best that the medical community can offer. YOU'D THINK SO, WOULDN'T YOU??? I appreciated the opportunity to respectfully tell him what was going on - that it didn't matter what your speciality or lack of, was. What mattered was whether or not one had done there homework, are still doing their homework, works independently of what the health insurance company docs spew, and is willing to risk much to see that patients are adequately tested and treated.
so...
Standard docs to mean equates to all docs of any specialty who have not been educated on this still much unknown bacterial disease. And that is the nice description. I believe from what I hear, that there are plenty in the field that know what they are doing is WRONG and still put their heads in the sand.
When antibody tests show that indeed, bacteria are on a mutiny in after many different combinations of abx, lyme sufferers KNOW that they still have spirochettes and waste ravishing their bodies. Yet, doctors say... no, you can't STILL have lyme... ????
As a professional in the medical community, seeing first hand the lyme patients alone that have been wrongly diagnosed and/or sorely undertreated for YEARS, I question how you can 'edit' recommend 'standard' docs.
And Lamotta, please do let me know where you stand in terms of your healing today.
Puzzled & frustrated... cj
CJFTWORTH, first let me explain what had initially happened to me again as I didn't write out my whole story and hopefully I can clear up what I wrote earlier. Stay with me cause this is gonna be a long one!
The first problem I noticed when I first got sick was I developed some kind of "overreaction" to Zoloft which I had been on for a couple of years without any problems. Suddenly, I was unable to take it anymore--the effects were greatly exaggerated and caused me to have a "serotonin syndrome-like reaction" that resulted in my hospitalization. I was tried on other medications to no avail....still the same problems. At the time, June of of 2003, I was having a trouble with a girlfriend which caused a lot of stress and lost a lot of sleep. Somewhere during this turmoil, I started having panic attacks and I naturally attributed it to the stress of the relationship, loss of sleep, and possibly withdrawal from the Zoloft. We broke up and the panic attacks had stopped although I still felt anxious and irritable a lot of the time. Ok, I thought I was fine until about three months after that, I came down with a severe flu (or so I thought) which came on very abruptly with me feeling like I was going to faint. For the next couple of weeks, I was extremely fatigued to the point where I couldn't hardly get out of bed and my anxiety levels were through the roof. I slowly but eventually fully recovered from this or so I thought. I tried to make it back to the gym on day and all of a sudden, the faint feeling returned and back in bed I went. I suffered for another couple of weeks only this time, I never recovered. From that day on, which has now been well over a year, I never felt the same. Been sick ever since and nothing has really help me. The symptoms got worse over the winter and better in the summer, but I never returned to any signs of normal. My symptoms were and still remain as unrefreshing sleep, persistant fatigue, constant anxiety, bouts of depression, brain fog, frequent panic attacks with no warning, intolerance to exercise or stress (post-exertional malaise), and intolerance to several medications, herb, vitamin and mineral supplements. When I first got sick, I didn't know what it was...I thought I had mono. I was given a thorough blood test and nothing showed up. I took me a couple of months to finally get so fed up that I told my doc, "test me for everything!" And so he did---i was even tested for HIV! After a laundry list of blood tests only ONE thing showed positive. And it was, you guessed it, a positive Lyme Elisa/Western Blot.
OK, that's how my story began, but like I mentioned in my previous post, I was happy but at the same time skeptical about the diagnosis. I had mixed feeling about it, but was just relieved to have some clue as to what was happening to me. However, from all the tales and studies of Lyme Disease I've been told or read about, there would have been a bull's eye rash and most likely I would suffer from arthritis, usually in the knees...I noticed neither of these. Of course, not everyone suffers with both, but having at least one or the other is VERY common so I had reason to be skeptical. Of course, I had to give antibiotics a trial run and my doctor felt that since my symptoms were mostly neurological, IV Rocephin would be the best choice. After 6 weeks, It did nothing for me which my doc thought was very odd. I saw another doc and he figured we could try Doxycyline and afterward I noticed a slight reduction in symptoms a couple of weeks after stopping them. I can't honestly tell you I started feeling a little bit better because of the Doxycycline for 2 reasons---1) I didn't feel better while I was on them, only after I had stopped 2) It was turning spring and getting warmer which was making me feel better anyway (more energy and sleeping better). At this point I started to get frustrated, scared, and desperate. Because 3 months of continous antibiotics had failed me, I thought I needed more!
So, to answer your question, I got angry because I was still sick and for some reason convinced that more antibiotics were the answer, yet none of my doctors thought so and would give me any. To answer another question, I've now been diagnosed as having "Post Lyme Syndrome" which is in a sense "Chronic Fatigue Syndrome with a known trigger" and I myself believe this is what I have. My doctors believed that at some point I may have been exposed to the Lyme Disease bacteria, Borrelia B., but since I was adequately treated for it, it's no longer an issue. This bacteria was most likely the "triggering factor" for my now chronic condition. Angrily, I fought this diagnosis in my mind for a long time of thinking this can't be, but after thinking it through and doing my own research, I realized they were probably right. I came to this conclusion in a number of ways. First, 6 weeks of Rocephin had absolutely no effect on my symptoms which is nearly impossible if Borrelia was causing them in the first place. Rocephin is just to powerful an antibiotic for a large majority of this infection to withstand and it works FAST (you should start feeling better in 2-3 weeks). Some may have remained, of course, but an additional 6 weeks of Doxycycline would have been more than enough to handle that. However, neither treatment seemed to improved my symptoms. Secondly, I have the 2 "hallmark" symptoms of Chronic Fatigue Syndrome which are post-exertional malaise which means I'm quickly and easily bedridden by overexertion or stress and extreme and unusual sensitivities to certain medicines. These are the symptoms that seperate Chronic Fatigue Syndrome from most any other disease. Thirdly, I had an MRI scan of my brain and it was normal. People with Lyme Disease suffering from neurological problems usually show abnormalities, however people with Chronic Fatigue Syndrome do not. Fourthly, the New England Journal of Medicine studied the continued use of antibiotics in chronically symptomatic patients in two separate studies and they were found to be of no benefit.
I want to address some misunderstandings. In your post, you wrote that showing a positive ELISA/Western Blot antibody test means the Lyme bacteria "are on a mutiny." This is not necessarily so---as the CDC and infectious disease specialists know, these test were only designed and intended to be confimatory---not soley used for a positive diagnosis of Lyme Disease. This is a very important distinction to be made! Like one of my docs explained to me, I may have been exposed to the bacteria, hence a strong antibody response, but that does not mean the bacteria lived to tell the tale or are responsible for my symptoms, ESPECIALLY since the antibiotics didn't work. Studies have shown, people with no symptoms at all can show a strong antibody response so it really proves nothing. Antibodies only show that the immune system at some point recognized exposure. To say every time a positive antibody test means an active infection MUST be present is like saying every time you see firemen, there must be a fire! It just isn't so.
You stated that you question how I can 'edit' or recommend 'standard' docs. I find this comment laughable! First, I am a Pharmcist! A medical professional! Counseling patients is part of what I do for a living everyday! Second, there are several people on this health board with absolutely no medical training whatsoever giving out all sorts of advice, yet no one seems to have a problem listening to them...Why should you have a problem listening to mine? I don't think that was very fair of you to say that. Thirdly, what makes you so sure a LLMD is any better than any other doctor? Do they have crystal balls or something or is it just because they practice outside the box? Does not accepting insurance, as most of them don't, somehow make them better? Where did you get the notion that insurance companies tell the doctors what to do? All insurance companies try to do is cut costs...The doctors only listen to them when the patient says its ok to do so...its always up to the patient to decide if he/she wants to pay for the meds...that's it. Let me tell you something else, I do believe that many people who think they have Chronic Lyme Disease actually have something else going on, especially if 3-6 months of antibiotics have failed to show benefit. Wouldn't you say thats pretty reasonable to assume this especially when no one can even prove a live infection is still even present? Until there is a definitive test for cure, I guess we are all in the dark.
And Finally, to answer your last question, my current situation is as it has been since this whole thing started. I'm still sick, I'm still frustrated, and I still haven't found a thing that helps me feel better for longer than a couple of days. I believe that unless I stumble upon an effective treatment for Chronic Fatigue Syndrome, I'm gonna suffer until it eventually resolves on its own and there is a very good chance that it will. It is a VERY real disease and very debilitating. So tell me YOUR story...I would like to know your symptoms in detail and how well you have done so far on your treatments.
Good morning Lamotta,
Though I wish I could have slept longer...
First of all, after reading your post, I realize that my post came off as attacking you personally and for that, I apologize. Please forgive me. I was spewing out of frustration, out of my own short history with the medical profession, and greatly for those who've gone through truly, horror stories because, in my opinion the medical community is in the dark ages about lyme. In saying that, I do mean that this is unecessarily so.
I'm brand new to lyme. So much of what I shared I do not KNOW, I'll have to admit. Lamotta, I did use the term 'antibodies' but what about those who use other tests that show live spirochettes? After months and months of treatment? For me to try and 'debate' lyme with my knowledge base is using my resources poorly... - I'm not sure why, but your post just stirred 'fight' in me. Maybe from fear... I need to trust that somebody will be able to treat me and be trusted. Your post threatened that.
You asked me to share my story. My diagnosing history is in a nutshell been told. I've tested positve for lyme with Ignenex labs on the IGM & IGG and waiting on coinfections testing results - hoping to get them today. I'm hoping to attack this disease with complemenary medicine.
I do hope you find health and answers and peace. Hope the same for me and the rest that suffer with anything.
Question for Lamotta - From your professional point of view - How good are antibiotics at penetrating soft tissue such as the brain, heart, liver, kidneys, etc.... I know that some are better than others but is this even possible of antibiotics?
This struck me as the crux of the dilema "Secondly, when people have a mystery illness such as mine, they get scared! They want an easy explanation for why they are so sick! When I heard Lyme Disease, I actually got happy about it! I thought a few weeks on antibiotics and I'm cured! Oh well...i guess life can't always be that easy"
I am going to a LLMD who has an excellent reputation. He said " Medicine is much of an 'ART' as a science. Forty years from now many of the ideas about diseases and other medical problems will have proven false."
So Lyme disease is not fully understood. For example, now they think it may be over a hundred different pathologies. Perhaps the medications work on some of those pathologies and so people find they are "cured".
So what can one do. I have tested positive. I am seeing a LLMD. I am also taking supplements. I am exploring alternative methods e.g. Modern Chinese medecine. I also try to let anything go that can effect my immune system like ANGER & RESENTMENT. I read Healthboards most every day.
I have been duped by false promises for cures. I have had my battle with the doctors billing staff & insurance. Lawyers are a whole other topic. It is frustrating! God Damn it!
I have heard from many including a doctor of vet medicine who works at NC State Vet School who knows a lot about Babesia - he said that he is sure there are strains that have not even been discovered yet that exist. The same goes for lyme...
CjWorth, your apology is accepted. I understand how my previous reply could seem threatening because of the negative nature of it. I wish it wasn't so, believe me...I want to be cured as bad as anyone else on here, but I just refuse to lose sight of reality. Please remember though that my situation would be classified under the "worst case scenario" group. Fortunately, many people can and do see some benefits from antibiotics very quickly, so for them treatment is justified. You can't argue with results---or the lack there of for that matter. About detecting the actual bacteria in the body, there is a way to do this, however, it just isn't very reliable as a diagnostic tool. It's called the Lyme Disease PCR which can detect the Borrelia DNA in blood, urine, and spinal fluid. Unfortunately, in late stages of the disease, these bacteria rarely remain in these fluids; they tend to reside in body tissues and organs. Trying to find the bacteria with this method is like finding a needle in a haystack. Therefore, you could have tons of false negatives with this. I wouldn't rely on this test for a diagnosis, unless of course, you wouldn't object to them taking a brain sample! No thank you!
Ncgirl88, fortunately some antibiotics are very effective at penetrating tissues which are also quite effective at eliminating Borrelia. The tried and true of these would include Rocephin, Tetracycline, Doxycycline, and Minocycline. Any of these would be great choices, especially late in the disease. I've read that other drugs like Cipro and Levaquin are starting to be used at high doses to improve tissue penetration, however, they aren't very good candidates for long term use due to the risks of side effects.
Samaya35, I agree with the point of view that Lyme Disease is not fully understood. There are things going on with the disease in some people that even antibiotics can't seem to cure. It can leave a lot of damage in its wake for people like me. Unfortunately, this leaves many of us at wits end and we fall victim to bogus claims for a cure. I'm sorry that this happened to you--i'm sure everyone of us has been let down at some point. I can sympathize with billing and insurance problems---seems like thats going to be a problem for anyone with long term problems unfortunately---i've had my share as well.
If I seemed to offend anyone I apologize for that...having differing opinions can lead to some pretty heated posts. Just remember that we are all in this together and I'm only trying to help. If anyone has any questions for me, I would be more than happy to try and answer them. Thanks.
Hello Lamotta,
"About detecting the actual bacteria in the body, there is a way to do this, however, it just isn't very reliable as a diagnostic tool. It's called the Lyme Disease PCR which can detect the Borrelia DNA in blood, urine, and spinal fluid. Unfortunately, in late stages of the disease, these bacteria rarely remain in these fluids; they tend to reside in body tissues and organs."
The Chinese medicine man claimed the PCR test as proof that his herbal meds cured Lyme disease!!!! So your topic about "Difficulty accepting Lyme as a diagnosis" seems well founded. It is bad enough that I may experiment with this Dr's method, but what if I shared it on the Healthboards as an inexpensive way to cure Lyme with none of the potentially serious side effects of Antibiotics.
Lamotta,
I appreciated your previous two posts. Yes, llmds do find lyme in many, many people and save their lives. But I do agree that there may be isolated cases such as your own and that of your friend in whom lyme is 'proven' yet not accurate. llmds are human beings and human nature being what it is, some could be misguided or motivated by great ideals yet seeing lyme even where it's not. They put their shoes on, after all, just like you and I and standard docs. It all comes down to each individual and his/her conscience and objectivity. I hope you will receive help by the right person along the way. I've spent googobs on trying to cure an 'ovarian problem' before I was told it was possibly lyme and frankly, my skepticism has grown taller and sharper than Pike's Peak.
I am facing a dilema as well. I've tested for high fibrin in my blood, supposedly an effect from 'lyme' as proven by several other lyme special tests. Yet I feel okay. Occassionally I'll have what I think is flare up of rhematism or muscle aches but I overcome. I took my lyme tests to an ID and he said they were ridiculous becuase my sedimentation rate is so low (numeral #1) yet I can't see how that's relevant personally.
I read, read, read and read on the internet until I'm blue in the face and bleary eyed. Liquid oxygen cures lyme! Hydrogen peroxide! Don't take antibiotics if you're not actively sick because they can't cure it anyway! and on and on--claim after claim. I just don't know what to do and even though I post on this board and get great insights, I just still don't know what to do.
Frankly, I'm afraid the llmd I saw found lyme because that's what he was looking for. Whatever....I'm not meaning to vent but you seem to have a lot of insight.
I figure if I take the antibiotics it will short circuit my immune system and the lyme (if I have it) will come back on my with a vengeance. After all, so far, my body is handling it.
Do you or anyone have any suggestions on any next steps I should take? If not, that's okay.
Thanks for sharing,
Ozarka
Samaya,
Ticker is wonderful. I took his advice and saw a llmd he recommended. I think the fellow was superbly qualified but he talked down to me. I initially said, rather sheepishly, that I didn't know if I had lyme and thought I might be misdiagnosed. He then defended the 'diagnosis' of lyme in the medical community for a chunk of my appointment. I felt pretty stupid and that once again the other causations for my problem may not be expplored. I asked him if I should leave well enough alone but he said lyme would come back on me and be devastating if I didn't cure it. I questin though, what's a CURE.
(I"ve had it probably for over a decade. I did have a time when I had lyme symptoms. I would lay awake in bed for four monthts at night, feeling like I was going insane. For these months, Pain would migrate all over my body, joints and muscles after an initial virus experience that left me with a sore chest when I breathed deep. Also, a few months later, I'd have facial paresthesis, weird electric sensations, skin sensations etc. and my primary doc just tole me to go to the mental health clinic. Clarify--one told me to see a psychologist, one told me I had hypoglycemia and the other told me I had the beginnings of something but he didn't know). Whatever...
Truth is though, after that initial, probably time of infection either with lyme or another virus, I"ve been a ball of energy through tragedy and stress--deaths in the family, ended relationships, changed jobs and stress upon stress without any return of symptoms. I know I was fighting something then and I know it could have been lyme, but still...
so are antibiotics the answer if it can't be eradicated anyway? Or should I find a way to strengthen my own immune system to continue to keep these spirochetes down and out. I never got an answer. In fact, this doc didn't even really ask me about my symptoms except to admit that the then symptoms (during the time of my appointment) such as tiredness etc. could just as easily be representative of the fact of a hormonal issue that was female realted.
So, yes, I followed ticker's advice which was excellent but not necessarily a reflection of the larger experience.
So...in short, I posed the queston and logically so. I'm tossing out lifelines.
Ozarka
hi all
in my jaded opinion, one of the biggest problems we are dealing with are the results of good for nothing dr allen steer and his goons. when he ramroded the lymrix vaccene thru fda and other medical qualifiers they had to reverse there position on the severity and diversity of lyme in general when it backfired. this is supported by what gov potackey of ny did to a recent lyme dr support bill. this peace of law was receiving unanimous support untill it reached the govs desk and was vetoed due to pressure from "in the box drs". i have dxs pos in all forms of testing including pcr and have been on abx over 30 months and will continue to trust my llmd with my future.
jon
I too have found the Lyme disease to be extremely frustrating. I have an excellent Dr who was upfront when he said there is no test to prove that you have Lyme or conversely that it is cured. That translates that the medical establishment is guessing of how to combat and in some cases ignore the disease.
So what can I do? Well, I I have tested positive. I am seeing a great LLMD. I am also taking supplements. I am exploring alternative methods e.g. Modern Chinese medecine to build the immune system. I also try to let anything go that can effect my immune system like ANGER & RESENTMENT. I read Healthboards most every day.
I have been duped by false promises for cures. For example the Chinese Dr said forget Western medicine. The antibiotics will damage your liver in the dosage and length of time you are taking them. But lamata77 in this posting says the PCR test that the Chinese Dr uses to prove his cure for Lyme is unreliable for long term cases. I have had my battle with the doctors billing staff & insurance. After 4 weeks of therapy a nurse called and said we are cancelling me as a patient. I asked why. Becasue your health insurance will no longer cover the cost. Lawyers are a whole other topic. It is frustrating!
Both you and lamata77 have also stated that you question wether you have an active case of Lyme. That is a question that I also struggle with. Before Lamata77 mentioned the unreliablity of the PCR test, I was going to switch to the Chinese medicine.
And so we struggle to find a way to cope.
Ozarka, I've read that you have ovarian problems and high fibrin levels and you were told that these could have been caused by Lyme Disease. First, I've never heard a single account of Lyme Disease causing either ovarian problems or high fibrin levels, but I guess some doctors feel they can attribute a suspected Lyme Disease infection to every single health problem you have. It's a very narrow minded point of view in my opinion and I would be just as skeptical as you are about it. You wrote that high fibrin levels were proven to have been caused by Lyme Disease "by several other lyme special tests." What are these tests you speak of because I've never heard of any Lyme Disease test involving fibrin level tests in them? I would listen to your ID in this matter--An erythrocyte sedimentation rate is a test to show inflammation in the body which is very useful to detect the possible presence of an infection or rheumatoid arthritis. If this is low, there is a great chance that fibrin levels should be low as well---high fibrin would cause the red blood cells to stick together causing a high sedimentation rate. My sincere opinion would be to get these issues checked by other doctors and be very weary of anyone who tries blame all conditions and symptoms on Lyme Disease. That sounds like witch hunting to me! Don't be fooled and always explore other possibilities. Also, if you do decide to start on antibiotics, I wouldn't worry about them doing any harm to your immune system. It is true that using IV Rocephin can wipe out white blood cells, but it is rare and completely reversible. In your case, I would even think about using IV meds anyway. Just make sure you have all your blood work checked often to make sure everything is ok. About strengthening the immune system, there isn't anything to my knowledge that is proven to do this. There, of course, are TONS of supplements claiming they can strengthen immune system, but many of them are scams so be careful. You CAN make sure that your body has all the raw materials it needs to funtion properly by taking all your vitamins and minerals, eating right, and avoiding alcohol and caffeine. A particular product getting attention now is undernatured whey protein because it was proven to boost glutathione levels which are essential to proper functioning...There is a lot of evidence that people who suffer from chronic conditions are depleted of glutathione. Do a search and read about it.
Samaya35, so this Chinese doctor of yours lied to you about using PCR to prove a cure when there isn't even such a thing? The test would most likely show up negative anyway...what a scam! And he told you to abandon Western Medicine as well? Hmmmm...does he sound like the kind of doctor you can trust with your health? I wouldn't think so...That is such a shame this guy scammed you like that. That guy should be locked up! Thanks for sharing that story and I'm glad I could help.
Samaya,
How do you know if you have active lyme? If there are no medical tests, why in the world, I've got to ask myself, would I even bother going on the antibiotics and heparin to thin my blood?
I agree...lots of quackery out there in the alternative community. Many folks think they can help but always seem to promote whatever they're selling or whatever expresses their expertise. I've tried acupuncture to restore my ovaries--no luck. I tried a colon cleanse--made me extremely ill and so on and so forth
I've spent enough that I could have flown to Fiji for a month, drank pure water and relaxed and accomplished as much.
The one thing that I feel might indicate if one should/should not treat with antibiotics is the Bowen test which sees the actual bug in your blood, but even that is highly suspect and considered down-right bogus by many. So I'm nearly to the point of doing nothing. Just let it go as long as I feel good.
Thanks for your responses and hope you are feeling okay.
Ozarka
Lamotta,
thanks so much for your insights. I didn't explain the 'fibrin' thing too good so looked up my notes from the doctor.
THe Bowen test showed coagulation problems (sticky red blod cells sticking together) but I had a seperate test for fibrinogen which was slightly elevated and "soluble fibrin monomer" which was 36 when it should have been in a range from 0-17. This 'hypercoagulation' thing is, I was told, common with lyme as its indicative of an inflammatory process. The inflamation may come from parasites, toxins or infections. Thus we also tested for parasites and toxins etc.--all okay. (somehow lyme was the next alternative). . Though my Lyme DNA by Qualitiative PCR was negative, my bowen test was off the charts. Also, doesn't plasminogen activator, inhibitor 1 being elevated indicate inflammation more than the sed rate?
Anyhow, this is all of it in a nutshell. Your insights are greatly appreciated as you seem to have a good grasp of medical stuff.
Ozarka
Hello Ozarka,
The reason that I have been on IV therapy is a complete trust in Western medicine. The results of 2 "scientific tests" Elsia and Western blot with all those confusing bands seemed to be indisputable evidence that I had Lyme disease.
To collect some more information, I attended a Lyme support group. I saw the serious effects of the disease. Got really scared and started this aggressive therapy.
The therapy has had positive results. My brain is funtioning again. Neck pain and headache gone. Joint pain in my knees has gone. The only remaining symptom is a constant ringing in my ears.
Now a question that will be raised today is whether insurance will cover more antibiotic treatment. The alternative is to come up with about $80,000.00 to continue on my own.
I try not to let this totally Stresssss me and my poor immune system. So off I go on my plane trip to the Dr today.
Samaya,
given that you were having these symptoms I think the agressive treatment was a good choice. My llmd however doesn't even do IV as he said that taking the medicine by pills was just as effective. Possibly you could save some money if you went in this direction.
Curious, have you been tested as a strep carrier? Some ofyour symptoms seem to me to suggest this based on what Im reading but I'm no doc, just a searcher.
If you were asymptomatic except for a blodo coogulation issue such as myself (purportedly caused by lyme) do you think you would have also done the treatments?
I think going to hte local lyme association meetings in my own hometown would helpme a lot so thanks for all this info.
Ozarka
Ozarka, I have read an article written by a researcher a while back about Borrelia B. It does seem that the bacteria can bind plasminogen which will activate plasmin---there is some truth to that. Now, whether or not you can use this value to diagnosis a Lyme Disease infection is another story---I've never heard such a thing being done. I guess that is because it could be elevated for any number of reasons and all of them must be ruled out.
Oh yes, and about using inflammatory markers for a diagnosis---just because they are present doesn't necessarily mean an infection is still live. Sometimes these markers will stay elevated for long periods of time due to the trauma of the infectious process.
