posted
Hi, I need some opinions please. I have been very ill for over 4 years with some kind of nervous system/brain dysfunction or damage. My symptoms are in one of my first posts here to the board should you want to review them. I am really struggling with whether I have Lyme or if something else is causing my problems. I am getting a lot of different answers from docs and others who have experience with Lyme. I did get an Igenex Western Blot done and it came back NEGATIVE. Here are my results:
IgM: Weak positive for band 18. IgG: Band 41 positive and band 39 IND.
I also had a CD-57 test done through Igenex that came back very normal. Neither too high nor too low.
I spoke with Doctor at Igenex and he confirmed my results were negative on the Western Blot.
Everybody I have talked to says they do not believe I have Lyme and my problems are being caused by another source. I do not remember being bitten by a tick and I did not have a bullseye rash but I know most people don't. I have been in areas where I would have been exposed. The docs have said my symptoms don't really fit Lyme Disease but I disagree. However, I am on the fence about it because of my test results. I would have thought I would have made more bands on the Igenex test if I did have Lyme Disease and I also would have thought the CD-57 would have been abnormal, although I know that is not always the case. Other people have mentioned that because I am so sick that my immune system could be too weak to make the Lyme antibodies. I mentioned that to a Neuro I just saw and they (like other docs) said that does not make sense because my CD-57 was normal and I have enough T-cells and because I also had some other tests done last year that are markers of how my immune system is functioning. the tests I had done were the Immunoglobulin IgG test, the Immunoglobulin IgA test and the Immunoglobulin Igm test. All 3 of these were blood tests and all of them came back very normal. The doc says this shows my immune system can make antibodies and it is functioning very well. Are any of you familiar with these immunoglobulin tests and is this information accurate? They also tested me at the same time and said I am still making Tetanus and Diptheria antibodies. So again, they said my body is very capable of producing antibodies. I also had the EBV in the last year or two and I am still showing some antibodies to that. However, I know longer make ANA antibodies or antibodies to wheat and gluten like I did in the past. I never had an allergy to wheat and gluten...just more if a sensitivity. Thanks for reading this and I would appreciate any input you may have. Again, my symptoms are located in one of my original posts here. Thanks so much!!
Posts: 51 | From Indiana | Registered: Dec 2009
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Hi Lori:
This may not really be a help but if you take a 2 month course of oral doxy and Tindamax that may be long enough to see some results.
1) A herx reaction, while not pleasant will indicate you have a spirochete infection.
2) If the neuro symptoms start to alleviate (tindamax is good for this although 2 months may not be enough time) will also indicate an underlying infection.
I think a good neuro LLMD like Dr. K in CT would help with this as you may need IV versus orals if its neuro lyme.
Not an MD, just my opinion.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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posted
Thanks for your thoughts. I appreciate that. Unfortunately, I am unable to travel to CT for help. I have thought about doing the antibiotic challenge but am so sensitive to meds that I can not even use fish oils. What do folks do on limited incomes? Most of the LLMD's do not even accept insurance and they require lots of out of pocket money up front. Thanks again for your help.
Posts: 51 | From Indiana | Registered: Dec 2009
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posted
Thanks for the information. Has anyone else had their immunoglobulins checked? Does this mean my immune system is functioning normally since they are all in range? Thanks
Posts: 51 | From Indiana | Registered: Dec 2009
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Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
You had an IND on band 39. This means there was some immune response to this band. Band 39 tests for a protein that ONLY Borrelia make, NOTHING else makes this protein, meaning that exposure to Lyme is the only way to get something showing at band 39. So I think it is reasonable to try some kind of herbal or pharmaceutical antibiotic challenge to see if that triggers herxing or if it triggers a positive test.
Lyme hides in the lymph nodes, and messes up the immune system from there. So numbers may look fine, but in actuality the Lyme bacteria is manipulating the immune system to ensure its own survival. The sickest patients often do not make any antibodies to Lyme. This is why the abx challenge can trigger a positive test.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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posted
Thank you for your responses and information.
Posts: 51 | From Indiana | Registered: Dec 2009
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
Lori - quick reply - am tired. Did they check your subclasses? There is total - which you posted - and then subclasses. IIRC the totals can be normal and subclasses can be subnormal. JFYI.
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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posted
I read an article, and members can correct me if I am wrong that stated if one has a positive Band 41, does NOT have syphillis or major dental issues, and presents with the symptoms of Chronic Fatigue (and I haven't read your symptoms yet, because I am on my way out the door today)that the person has Lyme Disease.
I know there is some controversy over Band 41, but I do know a few people from support group sites who were diagnosed based upon Band 41, only.
Do you mind sharing your exact CD-57 number? I am curious as to how high (or low) it actually is, if you don't mind.
I will see if I can find that article later, and I will post it for you.
Band 41 showed up on the worthless Elisa test for me and one other band, I believe 66? Anyway, it was enough for my doctor to want to move forward and get the Igenenx testing, where I was determined to be positive for Lyme Disease.
-------------------- Best Wishes,
Hope
"Hope is a good thing, maybe the best of things, and no good thing ever dies."
~~The Shawshank Redemption~~ Posts: 234 | From Minnesota | Registered: Dec 2010
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No, they must not have tested the subclasses. It was done through IU here and sent to Mayo. All the doc said was that my immune system was not overactive or underactive and was making antibodies. They did test to make sure I was making antibodies to Diptheria and something else (which I was)...so they concluded my immune system was fine and if I had something like Lupus (which has been a fear of mine because my mom had it) or Lyme Disease that my body would produce the antibodies to it. My CD-57 was a 185. My Sed Rate is normal and my CRP is only slightly elevated which has been the case for several years. Even before I got sick.
The other thing they tested for was the Epstein Barr virus. It did show that I had a very recent infection but I was no longer making the antibodies for a current infection but my other antibody titers for this were elevated.
Thanks to both of you for getting back to me and with your info. It is greatly appreciated.
I struggle with treating for Lyme because my nervous system is extremely fragile and suffered damage (functionally) from benzodiazepines and other psych drugs. I am very, very ill from that still. So my body does not respond to meds, antibiotics, vitamins, foods, etc like someone else who never sustained this type of damage. As a result most things either do not work as intended or they exacerbate my symptoms (which are already unbearable) to a level that is beyond enduring. On the other hand, I hate to leave something like Lyme untreated if I indeed have it as it could be keeping me sick and making my situation worse or actually causing everything I am going through now. It's very hard to know what is causing what at this point. I try not to add any new supplements or meds into my system unless I have a very good reason to do so because I will usually suffer for doing so. That has been my fear and dilemma about the antibiotic challenge or just starting treatment for Lyme disease when my test through Igenex was negative or not as clear cut.
Thanks for listening and all your input.
Posts: 51 | From Indiana | Registered: Dec 2009
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
Quickly again. IGG subclass deficiency I think is the name was trying to remember. On IGG - for me -I am subnormal in total/quantitative and subnormal in three of the four subclasses.
Can you share your EBV results? Early antigen included?
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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I typed out my results and a long response to you but it would not accept it her when I tried to post and erased it. If you have an e-mail address I can try to send it to you there. My results had alot of parenthesis and it said I could not put them in my post. That may have been why it was erased. Sorry...
Posts: 51 | From Indiana | Registered: Dec 2009
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