posted
Hello - I am new to Lyme, male in mid-thirties and very frustrated and confused with the Medical Profession. I had previously been diagnosed with OCD, depression, chronic fatigue, fibromyalgia, etc... etc... this all started about 13 years ago. For the last 3.5 years it has been horrible and most docs told me I was fine and there was nothing they could do ... In 2004, I was put into a psychiatric hospital for paranoia (not trusting my doctors); OCD (for researching illnesses); depression (for all of my symptoms); and hypochondria.
Lyme was tested in 1994 - Elisa negative (this is when a doc thought I had it and gave me amoxicillin for 2 weeks just in case; 2004 WB negative; Elisa 0.33. both via qwest; due to what I now believe was second stage event with numerous neurological; muscle/joint; vision; etc.. issues.
Over 50 doctors later and thanks to my neighbor I went to a new lyme doctor.
My test results were:
IGG WB positive via Igenex (not sure on CDC) IGM WB positive via Igenex and CDC
The IGM blot report is as follows: 18 + 22 - 23-25 + 28 - 30 - 31 + 34 IND 39 IND 41 ++ 45 - 58 ++ 66 + 73 - 83-93 -
I also have a CD-57 score of 22.
Starting this week I am now taking: Minocycline 100mg 2x a day; Cats Claw 150mg 3x a day; and feeling worse - (i.e., joints/muscles worse; light sensitivity way worse; tingling sensations worse; memory worse, and a new symptom of being dizzy).
I also have a mycoplasma co-infection.
Now my questions:
1) How is the IGENEX positive for both their criteria and that of the CDC, when Qwest was always negative. Also why is the IGM re-positive if I have been sick for 13 years ?
2) The CD-57 score of 22 seems pretty bad is this true ? I know I am really sick but I was wondering how bad this really is.
3) For the past 13 years no one ever believes me that I am sick (which has pretty much been all the time) especially since 2004, when the chronic fatigue etc.. started. Now even though I have been diagnosed and the family knows I am sick; I am still getting the eye rolling as to my worsening symptoms. They seem to think OK, now he is on medicine so he should be better. Everyone has been under the impression that I am crazy, so I do not know how to get through to them. As an aside I have been off all psych meds since 2005 when the psychiatrist agreed that I just "think" something is medical wrong and not depressed or in need of psysch assistance. Any advice on dealing with people that never believe your symptoms, etc... would be appreciated.
4) Any thoughts on my labs or anyone with similar labs your comments would be appreciated.
5) Any advice on how much worse I am going to get before I start to feel better would also be appreciated.
I am very happy to finally be diagnosed and actually having difficult accepting that the search is over as to what has been wrong all this time. Alot of emotions going on. Anyone with thoughts on this they would be appreciated as well.
Thanks in advance to any who respond *** well as to my neighbor (who actually diagnosed me in the driveway) and my new doc.
Posts: 48 | From New Jersey | Registered: Aug 2007
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posted
Hi Magaro, Welcome to Lymenet. I don't know much about your labs or the labs you use, my test for for the bacteria, not an antigen.
I can tell you that the WB looks for antigens which is what our body's produce when the immune system is functioning correctly and killing bacteria. If our immune systems are down, we can't kill the bacteria so we aren't producing antigens and the test will come back negative.
This is especially true for late stage lymies like you. Another point would be that if the infection is more in your organs over your blood stream it would be more likely to be negative.
You have been thru alot to get where you are, diagnosed! I imagine you do have alot of emotions right now. I relate to the mental issues because it truly is horrible to have others constantly chat about "poor" so and so, he never can quite get it together. That kind of "kind" platitudes . . .
I have had all of that but you really made me laugh when they said you were paranoid. Who WOULDN'T BE??? They make you that way but if you're suspicions are right, then you're not paranoid?! Geesh.
Do you have a LLMD?? This is critical. They know what to test for and how to get you well. The herx you are having is good news, you are killing off bacteria.
It's so difficult at this point because you will get well but very slowly. I hear about 18 mo out is when you start to feel you've really got a handle on this thing. That was me but I also improved EVERY month. One symptom at a time.
I happened to check into lymenet tonight to see how everyone was doing. I look about once a month because I am well.
I live my life! I have been 8 yrs on abx. I will admit the hardest thing was the neuro but I'm difficult to medicate but now I'm getting there.
I wish you well, please write if you have any questions. Take care, Curley
PS: As for dealing with other people, I found it best not to talk about anything I was going thru. I would just say I'll take a raincheck and thanks for asking. I wouldn't complain about how I feel, they just won't get it until something happens to them.
And believe me, when it does, they will come and apologize to you saying if they had any idea of what you were going thru, they would have helped alot more. They just don't know. They really don't.
Posts: 982 | From Florida | Registered: Feb 2002
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posted
****1) How is the IGENEX positive for both their criteria and that of the CDC, when Qwest was always negative. Also why is the IGM re-positive if I have been sick for 13 years ?****
Quest is not a good lab for Lyme testing. They do not test for all possible Lyme specific bands, for one thing.
...PROMISE me you will read the entire Western Blot link when you have time.
REad it several times, so it begins to make sense...and also read the replies that were made to this posting. Michelle M has some excellent information there for you, among others who replied.
From the Western Blot link:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM."
(Written by Dr C of MO)
=========================
Dr. Bransfield's Reason's for Seronegativity the reasons why you can test negative and still have Lyme disease.
1. Recent infection before immune response 2. Antibodies are in immune complexes 3. Spirochete encapsulated by host tissue (i.e.: lymphocytic cell walls) 4. Spirochete is deep in host tissue (i.e.: fibroblasts, neurons, etc.) 5. Blebs in body fluid, no whole organisms needed for PCR 6. No spirochetes in body fluid on day of test 7. Genetic heterogeneity (300 strains, 100 in U.S.) 8. Antigenic variability 9. Surface antigens change with temperature 10. Utilization of host protease instead of microbial protease 11. Spirochete in dormancy phase (L-form) with no cell walls 12. Recent antibiotic treatment 13. Recent anti-inflammatory treatment 14. Concomitant infection with babesia may cause immunosuppression 15. Other causes of immunosuppression 16. Lab with poor technical capability for Lyme disease 17. Lab tests not standardized for late stage disease 18. Lab tests labeled "for investigational use only" 19. CDC criteria is epidemiological not a diagnostic criteria 20. Lack of standardized control 21. Most controls use only a few strains as reference point 22. Few organisms are sometimes present 23. Encapsulated by glycoprotein "S-layer" which impairs immune recognition 24. "S"- layer binds to IgM 25. Immune deficiency 26. Possible down regulation of immune system by cytokines 27. Revised W.B. criteria fails to include most significant antigens
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Sorry to see that you have suffered for so long. At least now you're on the right track. Many people complain about dizziness in the beginning with minocycline. If it's too much for you, talk to your doctor about reducing the dosage and working up to the dose you're on.
Posts: 984 | From San Diego | Registered: Nov 2006
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I have experienced a similar situation....Its so difficult for people who do not have Lyme to understand how painful it is and just how horrible we feel. Have you ever considered attending a Lyme Disease Support Group? I find that the one I belong to to be informative and its nice to be around people who understand your situation.
In regard to your question as to how long you will feel lousy before you get better. I think that its safe to say that everyone is different. Due to coinfections, it has taken me a few years to get better. I hope that its much quicker for you.
Posts: 45 | From Medford, NJ | Registered: Mar 2007
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bettyg
Unregistered
posted
welcome magaro; glad you found us!
i'm sending you a private message, pm, with 62 pages of newbie links, advise, symptoms, tests, disability, much more, and TREEPATROL'S archive of over 1000 links of good lyme info.
in there look for these wonderful informative articles about dealing with SKEPTIC family/friends/co-workers:
--- Lymedad's letter to family/friends!
*** Dar's TOY story
*** the SPOON THEORY
all excellent!
lymetoo/tutu's answered other questions you had
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I think you'll find your story is pretty typical of most people. (Misdiagnosis, family and friends not really understanding what you're going through.)
The only reason I ever even thought about getting tested for Lyme was that my ex-boyfriend diagnosed me. I tested positive for Lyme and Ehrlichia and was clinically diagnosed with Babesia.
Curley911 is absolutely correct! Your friends and family have no clue what you're going through. Who could unless they have to deal with this?
Most peoples' experience with taking antibiotics is for an acute infection which usually resolves quickly once treated.
Treating a chronic infection (particularly Lyme) is a completely different ballgame. They don't understand that you'll feel worse before you get better. They expect it to be a linear improvement and it rarely is. There are a lot of ups and downs on the road to recovery -- and it can be a long road, indeed.
I agree that it's best not to constantly talk about feeling bad -- most people have no patience or interest in that. I don't think it's lack of caring on their part but a lack of understanding. And there's no point in alienating them -- you're really gonna need them through your treatment.
It's best to talk to other Lymies (either online or in support groups). These are the places you will find the understanding and compassion you seek.
Take care, BB
BTW, the first 2 weeks I was on Minocycline, I was so dizzy I couldn't drive or do much of anything. It got better after that and I was able to function. It is a listed side effect of the medication.
Posts: 105 | From CA | Registered: Apr 2005
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It's very common for family and friends not to understand. You look fine, you must be fine is the attitude we normally get.
Even my hubby didn't really get it... until he got it. Once he started lyme meds he fully understood and he kept saying, "wow, this is what you guys have been going through, how long does this last" I don't share a lot with extended family or friends unless we are really close. Truly, it's not their fault, this is very hard to comprehend unless you have been through it.
For me, on line support has been my saving grace. I don't comment much but I read a lot. When my kids and I were all diagnosed with TBI (me-lyme, 9y/o-lyme and RMSF, 11y/o-RMSF, and 14y/o-lyme) I used to go onto canlyme and read discussions and just sob. I felt such relief. It was wonderful to know someone understood, that I was not alone, and that I was truly sane.
Things do get better, by baby steps. Be sure to recognize and celebrate every victory, that really helps us. We focus on the steps forward and grin through the steps back. Don't let the steps back get you down. (I was up past midnight last night comforting my 9y/o daughter as she cried in pain begging for this to go away and for someone to make her better) Today will be better.
I am glad you have found this site and a diagnosis. You are moving in the right direction. Don't doubt yourself, what you have is real but you will get better.
Best Wishes, Patricia
-------------------- Every victory, no matter how small, deserves to be celebrated. Please excuse me while I do a little dance. Posts: 25 | From North Carolina | Registered: Jul 2007
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posted
Boy do I know how you feel right now! I have gone through the same thing with family, friends and docs for 8 years now!
I was afraid that I would be admitted if I kept my voice too loud so often stifled my voice to avoid it. Although I considered checking myself in a few times bc it all makes you feel crazy!
The cycle is horrible!
But every morning when you wake up I want you to look in the mirror, straight in your own eyes and say to yourself SEE I WAS RIGHT!!!! And forget every one else.
YOU know your body. Just as I know mine.
Just because someone doesnt or chooses not to believe something doesnt make it untrue. That is their issue, not yours.
You just connect with yourself and the people on this site and KNOW you are doing what is best for YOU and once again....
YOU WERE RIGHT!!!!!!
Hang on to that and SMILE!
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
WELCOME*)!*)!)! *)!*)!*)!)!*!
I had fibromyalgia- it sucked!!! It's all GONE now though- and hopefully you have a good LLMD and will get better, too!!! It is nice not to have pain!!!!!!!!!!!!!!!!!! I hope your doc is a good one*)!*!
WELCOME again*)!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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Itsy_bitsyone
Unregistered
posted
magaro,
Nice to meet you.
Where did you get bit? I posted something in off topic about Jersy-ites and where others got bit (There's where I got bit). Where do you hail from??
Sounds like we had some of the same docs.
I was nuts for years too...join the paranoia/hypochondriac club!
Its not easy, and I am disillusioned as well. It may be wrong, but its to the point that I don't see docs as anything but walking presription pads...
At least out here in the boonies I don't have to deal with LYME AND TRAFFIC. I just have to watch for bear and deer and stuff. And the occasional slow tractor or amish buggy. No tie ups at the toll plazas inciting road rage for me anymore!!
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Hi magaro --
Welcome to lymenet. Sorry that you are joining us here for the same reason that so many of us post here; years of undiagnosed lyme and illness!
You have gotten great advice above. The good news is with tx you will get better. The hard news is that it takes longer than we wish and is harder than we wish, with lots of ups and downs that make you doubt your progress sometimes. After a year of treatment, I clearly have improved but have a long way to go!
To answer some of your questions:
how much worse you will feel while you get proper abx treatment depends on a lot of things. Good rest and nutrition will be super important, as will taking it slow and easy.
For me, 200mg mino each day is still more than I can handle, for example -- my doc started me on 50 mg every 3 days! And I herxed significantly with that for the first month. I recently started shots of bicillin LA, which seem great for my neuro-symptoms, even after only 2 weeks.
So, take it easy and speak with your llmd's office whenever it gets too rough. But do not be afraid to treat, the only way out of this illness is through proper treatment!
Some people have an easier time, and I hope your recovery goes well. Saunas and hot epsom salt baths with baking soda have been a nice detox method for me that has helped along the way.
Read alot of old posts here on lymenet, and you will find alot of experience in treating lyme. Best wishes.
Posts: 2557 | From home | Registered: Aug 2006
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posted
I am so happy for you that you found out what was wrong! I celebrated the day I was diagnosed ... just knowing what it was meant I could treat it! It also meant I was not crazy.
It sounds like you are experiencing a herx. I get herxes once per month on a regular cycle and for a week or so after they change/increase my meds. I won't repeat suggestions that have already been made, but will add two - drink lemon water, take coffee enemas.
For family/friends, have them watch this. http://www.openeyepictures.com/underourskin/index.html It's difficult having a disease that is so misunderstood ... one where you might feel okay one day and be able to get out, then the next want to stay in bed all day.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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