all of this is translated from swedish, hope the terms still are the same..
- test results for lyme disease -
antibodies of IgG or IgM against lyme disease not found
(to me this sounds like a posivite test result but what the hell do i know?)
- test results for thyroid disorters -
Hb 147 g/L, other blodstatus is normal
S-ASAT 0,28 - S-ALAT 0,46 - S-GT 0,28 all normal results
S-TSH 1.0 - S-T4 free 16 and S-T3 free 5.1
- these are lines taken from my file -
99-09-12 EEG results normal
99-10-07 no neurological faults in status (yes, thats what it says)
- edit -
deleted 20 lines of ranting..
Last edited by sleepygonzales; 03-15-2005 at 06:02 PM.
Hi sleepygonzales. Regarding thyroid test results, many people (especially those who have symptoms) feel their best when their Free T3 and Free T4 are in the upper range and when the TSH (thyroid stimulating hormone is in the lower range).
For instance, here many labs say that the TSH result is normal from .50 - 5.5. Most people feel best when the TSH is around 1.0 Many people have symptoms when their results are "normal." What is normal for one person is not necessarily normal for another person. Did you have tests for thyroid antibodies? This is a blood test also. If not, I suggest you have it done.
I know it is awful to have to go through so much to find out what is wrong. Please research and learn as much as you can. So often, we need to be our own advocate for our health. You may want to also post on the thryoid board at this site. The people there are very helpful.
Regarding the Lyme test, the Western Blot should have a list of numerical bands with a rating of positive, negative or equivocal after each band. Usually there has to be several positive bands for the test to be considered positive; however, many people who have Lyme do no have that many positive bands. Certain bands are specific for Lyme, so it is important to see what the breakdown of the test is. Again, no Lyme test is completely reliable. Lyme disease should be a clinical diagnosis.
I hope you can understand my response. It is very confusing when tests are not completely reliable. Lyme disease and thyroid disorders can have very similar symptoms, and a lot of people who have Lyme have a thyroid disorder.
You know your body better than anyone and something is going on. Do not give up. I hope you can get the thyroid antibody testing done and get copies of all your test results (thyroid and Lyme).
thank you so much! now i know what i should ask for..
i am meeting with a psychologist today and will ask the head doctor (is that a term in english?) to get me a meeting with another doctor and get the tests done, last time is only took a week to get the tests done.. hope to have some sort of answer soon, will keep you posted
So sorry you are back at square one with tests. Don't give up. And don't worry about ranting here! I'm coming to believe it's what keeps you sane some days.
Read the post titled CIARA LYME REOCCUR?? Her lyme never did show up in blood but was later found.
Hi Sleepy - Fight for the Western Blot - do not accept just an ELISA titer. I was negative twice on the ELISA and very positive through IgeneX Labs in Palo Alto. I wished that you could find a doctor willing to FEDEX your blood to IgeneX.
thanks guys.. wonder what my doctor will say when i ask for a "western blot" test.. since im in sweden.. but at least i know that "the Western Blot should have a list of numerical bands with a rating of positive, negative or equivocal after each band." however i have a feeling the doctor will just stare at me with a confused look in her face when i tell her that.. for some reason i dont have much faith in doctors..
- the ranting begins -
i have talked to a lot of doctors and most of them say "you must be having a depression" well no sh-t doc! thanks alot, heres your money! how the hell would you feel if you constantly tired, nothing feels real and you don't even remember who you are? i was on anti depression medecine for two months when i was 17 and all that did was make my hands shake.. wonderful.. my psychologist also thinks i am depressed, he also thinks i might feel dizzy and have blurry vision because i consentrate on it so much.. thanks doc, that helps.
today i talked to my mother on the phone and told her my test resulst were negative and she seemed surprised i wasn't happy with the results. well since i've been like this for 7 years i would like to know whats wrong with me. i then tried to rant about doctors hoping to get some sympathy wich didn't work at all she proceeded to dismiss every bad thing i had to say about doctors wich kinda ****** me off..
and she said the same thing i have heard all my life. "you need to exercise and not just watch tv" and "why don't you go for a walk and get some fresh air?" i then replied i do walk if i have to and that it doesn't make any difference .. i am CONSTANTLY tired, what the hell is it you don't understand? she then said "well you know fresh air and exercise can really help" i then hung up and went out for a smoke.. checked my answering machine later: "i wasn't trying to be mean i just think you should get some fresh air and exer.." i deleted the message at that point..
when i was 12 and first had these symptoms i told my parents how i felt and described it as good as i could, during that time my parents were too caught up in their own dissagreements and going to wedding counselors (behind me and my sisters back) to really have time to care about my condition so i just didnt mention it again.. then when it came back at 16 i figured it would go away again but after 1 year and still no change i went to the doctor.. all test were normal and i never got diagnosed, screw it i thought.. maybe it will go away eventually. after a few years i just got used to it and forgot how it felt before.. i can't help but feel if somebody had cared either when i was 12 or 17 my life would have been so much better and i wouldn't be so messed up emotionally.. i blame my parents the most for allways saying "just go out and get some fresh air"
my parents aren't the only ones who has told me this, i have heard this from a bunch of people who i have told how i feel.. not to mention that every person i have ever met has told me "damn, you look tired" and "how come your so damn tired all the time?" every time i just get quiet and keep my anger nested deep inside my allready rage-filled mind..
- end of ranting -
you said i didn't have to worry about ranting..
- edit -
i can't seem to find the thread "CIARA LYME REOCCUR??"
Last edited by sleepygonzales; 03-18-2005 at 03:49 AM.
I just did a "denmark ticks" search on ****** just for the heck of it, and found this text on a site with the title "Denmark Health Overview":
"There are no specific health risks in Denmark, and medical facilities are first class. There is a small risk of tick-borne encephalitis in forested or rural areas during summer, and insect protection is advised. Free emergency treatment is available to all foreign visitors at public hospitals. Risk for travellers: In endemic areas during the summer months, travellers are at risk when hiking or camping in rural or forest areas."
i was in denmark when i was 12 years old (shcooltrip during the summer) i remember that we stayed at a nice place with lots of vegitation around the houses. i also remember jumping around in some sand dunes and running around in a museum with my friends.. thats the last time i ever remember having that kind of energy.. a few days after i got back home i got the same symptoms i have right now.. they lasted for six months then and then came back when i was 16.. during the time 12 years old - 16 years old i started to ditch school and just stay home and watch tv, just cos i was too tired to get up in the morning..
- edit -
also found this on different site:
"Borrelia burgdorferi infection in Ixodes ricinus from habitats in Denmark. A total of 2647 ticks of the genus Ixodes was sampled by flagging the vegetation in thirty-one sites in eastern Jutland, Denmark. All ticks were identified as Ixodes ricinus Linnaeus. A total of 317 ticks (202 nymphs and 115 adults) from three different sites were examined for the spirochaete Borrelia burgdorferi Johnson et al. by indirect fluorescent antibody staining; the frequency of infection varied from 7% to 22%. It is concluded that I. ricinus, known to be the most common tick in Denmark, is the vector largely responsible for the transmission of B. burgdorferi in this country."
- edit -
i read the symptoms of the first, second and third stage of lyme disease and am nolonger wondering wheter i have lyme or not. i am now 100% sure i do have lyme disease.. i have every single symptom listed on that page. including eye lid drooping wich would explain why i allways look tired..
allright, breakthru!
Last edited by sleepygonzales; 03-18-2005 at 04:51 AM.
wonder what my doctor will say when i ask for a "western blot" test.. since im in sweden..
you said i didn't have to worry about ranting..
i can't seem to find the thread "CIARA LYME REOCCUR?? "
Morning sleepyG,
Several things... First of all, rant on all you want. Now we know more of your story. Many relate to your last post about finding all the symptom lists and actually feeling relief that you might actually have LD. Especially after bouncing from doc to doc who don't have the descency to atleast say, 'I don't know what is wrong', rather than say, 'it's in your head'.
As for the Western Blot lab testing, I believe it is a world wide testing method for many things, not just lyme disease. You just happen to want a doc to run Western Blots for lyme disease. One thing you could do is print out the info on the Western Blot testing that Igenex Labs do. Having that in hand, would be better communication. Igenex Labs in Palo Alto, California.
And as for the Ciara lyme reoccur thread... I didn't really title it correctly.
Here is the part that I thought was interesting: I had lyme disease - only symptom was knee and leg swelling. The disease never showed up in in my blood - only after three surgeries where the last one they took fluid and it came up positive.
I was on iv antibiotics for two months then two more months of oral til last December. I was doing great - pain was gone and only left with what they said was some lyme arthritis which I could deal with. Then suddenly this week my leg swelled so severly and the pain was intolerable. There is a bakers cyst on back of my leg that has filled with fluid almost all way down my leg. Doctor tried to drain and take some fluid but could barely get any but thought had enough to test for lyme.
Sleepy, It is so frustrating to be sick and without a diagnosis, a competent doctor. I just feel and even deeper burden for you as you are in another country than most of here and I know 'we' wish we could hook you up with local support, doctors, etc. But hang on with us. I think you can get the treatment you need with perseverance. Just be selective with who you spend your time and money on. See what you can find out on the phone. Print of info from Lyme foundations that is clear and to the point (not too wordy) and take it with you.
Best of luck and my prayers are going out for you, cj
I, too, have recurring Baker's Cysts, the most recent just now winding down.
I haven't done anything about them, but I've only had them on one side previously and now, this latest was on both sides, and because I'm on Abx, I'm not sure if that started the bursting of them, and yes, they are painful, even as they "drip" down the back of the legs. I was told originally that they are a symptom of arthritis....does this make sense? I'm a wee bit foggy today...LOL day after St. Paddy's and all....just kidding! It's the Lyme!
Several things... First of all, rant on all you want. Now we know more of your story. Many relate to your last post about finding all the symptom lists and actually feeling relief that you might actually have LD. Especially after bouncing from doc to doc who don't have the descency to atleast say, 'I don't know what is wrong', rather than say, 'it's in your head'.
As for the Western Blot lab testing, I believe it is a world wide testing method for many things, not just lyme disease. You just happen to want a doc to run Western Blots for lyme disease. One thing you could do is print out the info on the Western Blot testing that Igenex Labs do. Having that in hand, would be better communication. Igenex Labs in Palo Alto, California.
And as for the Ciara lyme reoccur thread... I didn't really title it correctly.
Here is the part that I thought was interesting: I had lyme disease - only symptom was knee and leg swelling. The disease never showed up in in my blood - only after three surgeries where the last one they took fluid and it came up positive.
I was on iv antibiotics for two months then two more months of oral til last December. I was doing great - pain was gone and only left with what they said was some lyme arthritis which I could deal with. Then suddenly this week my leg swelled so severly and the pain was intolerable. There is a bakers cyst on back of my leg that has filled with fluid almost all way down my leg. Doctor tried to drain and take some fluid but could barely get any but thought had enough to test for lyme.
Sleepy, It is so frustrating to be sick and without a diagnosis, a competent doctor. I just feel and even deeper burden for you as you are in another country than most of here and I know 'we' wish we could hook you up with local support, doctors, etc. But hang on with us. I think you can get the treatment you need with perseverance. Just be selective with who you spend your time and money on. See what you can find out on the phone. Print of info from Lyme foundations that is clear and to the point (not too wordy) and take it with you.
Best of luck and my prayers are going out for you, cj
the thought of having to get surgeries isn't that great.. but since i am sure i have lyme disease i guess i might be forced to at some point, cos they can't just give me a treatment based on what i think..
Sleepy, I have a couple questions for you. First, do you have a lot of anxiety and/or experience panic attacks? Second, when you decide that you want to exercise or exert yourself, do you feel ill with flu-like symptoms and very sore for days afterwards? Thirdly, have you tried or considered Cognitive Behavoral Therapy and/or stimulant medications like Dexedrine or Provigil? Fourthly, how do you sleep at night and have you ever had a sleep study done? Lastly, do your symptoms seem to flare up a certain times of the year...feel worse in the winter, better in the summer?
Let me know your answers and I'll tell you what I'm thinking...
Hi guys. I am thinking out loud a little and just want to bounce a few things off you. Wondering if pituitary function and consequently adrenal function come into play when you talk about chronic fatigue and lyme. We know that lyme can affect the pituitary gland, which of course affects both thyroid and adrenals. The chronic fatigue symptoms you describe (which are undoubtedly actual chronic fatigue and not something else) can be attributed to the lack of cortisone and result of stress to the adrenals, among other things.
I guess what I am asking is this: Can't chronic fatigue (epstein barr) be caused by any autoimmune disorder? Can't you have lyme which manifests as chronic fatigue by attacking the pituitary, or adrenal disfunction which creates fatigue and depression then appearing as chronic fatigue, or mono which creates epstein barr antibodies and then becomes ongoing chronic fatigue.
Chronic fatigue is a real and debilitating disorder. It has plagued me for years. I hope we get a solution to the problem very soon. Tell me what you think of what I said because I don't want to be misinformed and would like truth-based ideas.
Sleepy, first I didn't mean to scare you however its kind of hard not to be when you read what I just wrote. I went through the same shocking realization too when it was explained to me and I was and still am very scared about it. Its something that we have to overcome though because being afraid will only compound our problems...we need to learn to accept this and work towards feeling better.
Secondly, the word "cognitive" means refering to "cognition" which right out of a dictionary means "The mental process of knowing, including aspects such as awareness, perception, reasoning, and judgment." So the type of therapy used most often in people with Anxiety, Depression, and Chronic Fatigue Syndrome is known as "Cognitive Behavioral Therapy". This kind of therapy basically is where you are made aware of your negative emotions and how distorted from reality they really are...and just because you "feel" something emotionally, it doesn't necessarily make it true. The idea is to bring back a firm sense of reality to the patient by not allowing all the negative thoughts and feelings to go on distorting your perceptions of life.
While this kind of therapy can work wonders for people with psychological disorders, I don't believe it works nearly as well in people suffering from Chronic Fatigue Syndrome or even Lyme Disease as these are actual physical illnesses. It CAN help you cope with everything going on which is possibly the biggest step you can take to getting better.
Sleepwoken, it is very true that hormone levels can be greatly affected in someone with Lyme Disease and Chronic Fatigue Syndrome. It is a VERY good idea to get thyroid, cortisol, testosterone, etc tested as improving all of these levels can be key to feeling better. I myself have had everything under the sun tested and everything came out looking completely normal. Nobody knows for sure why I am so sick because none of my current tests show any abnormalities. My poor doctors don't know what to do with me!
Secondly, you are correct that any autoimmune disorder can cause chronic fatigue as can many psychiatric illnesses. That's very true and all possible disorders (MS, Lupus, etc) MUST be ruled out. Lyme Disease, itself, must ALSO be rule out or properly treated first. We must, of course, make the distinction between "chronic fatigue" and "Chronic Fatigue Syndrome" though which are two VERY different things. Chronic fatigue is explainable by some other physical or mental illness whereas Chronic Fatigue Syndrome is not. The name of this syndrome is very misleading because it deals with A WHOLE LOT MORE than just being tired....whew, any one who has this knows what I'm talking about. Read up on the symptoms and you'll see what I mean. I appreciate your insights though. Hopefully, someday this case will be cracked and we can get on with our lives.
Oh yes, Sleepy, its important to note that both Lyme Disease patients and Chronic Fatigue patients complain of memory disturbances. If you were treated appropriately for Lyme Disease (and I must add that the ideas of whats approriate vary greatly) and still have memory problems, more can be done to help you...talk to your doctor or see a neurologist about this issue. I also suffer from memory problems as well...learning new information and recalling it at will has been more and more difficult for me. I personally don't take any medication to help this problem, I only continue to challenge my brain constantly with learning new info on a daily basis to try and keep my mind as sharp as possible. Almost all people, however, who have eventually been cured of Lyme Disease or got over Chronic Fatigue Syndrome say that their memory returned again so don't lose hope.
lamotta--I have had these tests also and practically nothing was normal. Please give me your input on this: DHEA at the level of a 90 year old, absolutely no readable amounts of testosterone, very low epinephrine, low seratonin, hashimotos hypothyroid, low cortisone (deficient adrenal levels) and a pituitary gland that will not respond. My doctor shot me with pitosin and absolutely nothing happened (I was supposed to get a rush/flush and increased libido). She says my pituitary gland is non-responsive, possibly non-functioning.
I'm thinking I should just be dead then. I've got nothing I need. No wonder I have so little hair and no energy.
Sleepygonzales, I'm pretty much in the same boat as you...I don't hang out with friends too often and there's no way I could keep a girlfriend or a job. This situations really sucks for us and I really hate to be the bearer of bad news to you. But, don't give up on yourself. Somewhere around your area, there must be a physician that can properly evaluate your situation and give the proper medications to help you feel better. Hopefully, at some point, all this will resolve on its own when everything is properly managed. Please, I urge to read Dr. Teitelbaum's book "From Fatigued to Fantastic" [[[removed]]] There is wealth of info there that can help steer you in the proper direction.
Sleeperwoken, now that you have all of this information available about your condition you have to treat it! Everything that you mentioned (serotonin, cortisol, epinephrine, dhea, testosterone, thyroid) can be replaced or corrected with medications! I can assure you that it you do this with the guidance of some good physicians and specialists, you can get your life back on track. Don't give up hope on this. Your condition is very treatable! Once you do, you are gonna feel a hell of a lot better..
Last edited by moderator2; 03-19-2005 at 04:57 PM.
Reason: authors and books are allowed - please do not promote websites
Lamotta,
