posted
Hi there, I posted this under 'General' but was advised to re-post here...I've been reading here for a while, but now that I finally have my IgeneX results back, I thought I should finally post.
More than two years of severe symptoms, limiting my activities by at least 50% on average (symptoms come and go). Mostly fatigue, exercise fatigue, brain fog; muscle and joint pain too but bearable. Lots of other symptoms, like going around all the time with a case of the flu. (When I went through the two-page Burrascano list of symptoms, I checked 60% of the symptoms to at least some degree.)
Regular medical tests have found nothing abnormal at all; I went to an endocrinologist because I thought it might be thyroid, she says I'm fine. My allergist says I'm fine, my GYN says I'm fine, my GP says I'm fine...he has tested me for a lot of things, mostly at my insistence. Two CDC Western blots with nothing but line 41 positive.
The IgeneX test, though not impressive, gives me more hope: IgG--31 IND, 39 IND, 41+ IgM--34 IND, 39 IND, 41+
Does anybody want to comment? I have looked at the notes here about what this means and it seems possible that it's telling me I have Lyme, Bb. I did read Dr. C's explanation posted here; I do have an appointment for the end of March with a good LLMD out of state (Dr. C).
Should I try to get my regular doctor to start me on abx now? It might be a hard sell, but he might... or should I wait?
Posts: 261 | From Nebraska | Registered: Jan 2010
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You might just take some herbs for now and probiotics. Also work on detoxification. Get a head start on preparing for treatment.
I like the Buhner herbs - andrographis, resveratrol, cat's claw, and Banderol is what my LLMD had me on. They are very strong, so if you do try them, ramp up slowly.
Turmeric might help with the flu-like symptoms .... I like it in tincture form.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
sgk--thanks, I do take probiotics and have been doing so for some time. I take some B12, B-complex, D3 (2,000iu), and recently started taking E which seems to help with hot flashes.
At night I take a hot bath with Epsom salts which gives me magnesium, and some melatonin which helps me sleep better.
I did start taking some olive leaf extract every day because I read it can work like a mild antibiotic.
Otherwise, I have been reluctant to try herbal remedies without knowing more about them, what the need for them might be and what the possible side effects might be... I see lots of lists about these herbals but haven't found good explanations/discussions of them. Any links where I can learn more?
I eat a health-supporting diet, whole foods plant-based only with very little sugar, no alcohol. I have started drinking 1 cup of half-caff coffee, though--it helps me HUGELY with the brain fog. Has anybody else experienced this? Otherwise, I do drink green tea but decaffinated.
Posts: 261 | From Nebraska | Registered: Jan 2010
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posted
I believe band 41 is not specific to lyme but indicates a spirochete -tail.
Get Buhner's book and try some of his recommendations just take it very slowly in case you react negatively to some of the herbs.
The herbs have not worked for me-but I'm a very late/neuro case. Had Idiscovered them 12 years ago when it was more fibro.. may have helped.
You need to get detailed testing for yeast (great plains lab OAT)-- yeast can cause those symptoms.
No easy answers there are so many pathogens-viral and bacterial and toxins (i.e heavy metals) to consider--and be tested for if you can afford it.
Your test is not positive for Lyme- but most LLMD's diagnose based on clinical/symptoms not just the IGENEX test.
Posts: 200 | From New England | Registered: Dec 2009
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posted
I'm not so sure that the Igenex results mean a whole lot there. It's a borderline sort of result (at least to me it looks that way).
See what the LLMD says... symptoms are the way to diagnose, as others have said.
You can get tested for co-infections, if you haven't already. For some weird reason most family doctors don't even bother with co-infections, but it would seem logical to test for both Lyme & bart/babesia/ehrlichia/spotted fever at the same time. One of the first things most doctors ask when you mention Lyme symptoms is if you have ever been bitten by a tick. Yet co-infection testing (if positive) is clinical proof of tick exposure.
Posts: 584 | From NY | Registered: Feb 2009
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posted
My Igenex test was identical to yours. I also had the CD-57 done which was 21 but my LLMD in NY said he doesn't rely on that test at all. He is not the one that ordered it.
He treated me based on my symptoms but 5 years later I am still sick. I was only in treatment for 30 months.
I have posted before that he also stated that in his opinion 41 doesn't mean Lyme at all but he does give a trial of abx to see if there is some sort of reaction.
He also tested me again (twice) and I only ever had a 41+ never any other bands. I was also tested for co-infections.
If I were you I would try the abx and see what happens. I never had any kind of herx or any symptom relief.
So I stopped treatment (abx) and am looking into other reasons...
Posts: 343 | From North Carolina | Registered: Oct 2008
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
I would suggest you look elsewhere besides Lyme disease for the cause of your illness.
posted
I have been tested for EBV a couple of times; I don't know about the other viruses but I can try to ask.
Over the past couple of years I've been treated with abx for other things, once for a sinus infection and once for an unknown infection--both times, my symptoms improved dramatically. The last time was Levaquin for 3 weeks--my vision which had been blurry for months cleared up suddenly. Oh, and that antibiotic gave me a very severe sweating episode through one whole night--could that have been a herx? The time before that was Bactrim (clarythromicin) which dramatically improved the fatigue.
I thought that this effect was an additional clue that it's a bacteria that is troubling me.
Posts: 261 | From Nebraska | Registered: Jan 2010
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Lyme Disease is a "clinical diagnosis" and a good LLMD would know this.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
I think six gave you good advice. Other than that I would say just wait until you see your LLMD and see what he has to say. Then you will have a better idea,. Your symptoms sound like Lyme.
If you have been ill for a while you may not get positives on your testing. My only positive test over the years was for Bas Duncani.
But I have Lyme, respond to treatment. That part of the key to the puzzle is how you react to meds.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I first had just band 41. I only developed a specific band while on antibiotics. Actually a year into treatment. That is why LD is a clinical diagnosis.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
THOSE are very good indicators you do have something in the lyme and co's department.
Any time you get good reactions to abx is a GOOD thing!!
The LLMD you are headed to will be a GREAT asset in sorting all this out. A spade is a spade in his book. And he calls it that way!!
A regular doc in your state that sees the light is a rare occurance. You can ask,but dont hold your breath!!
Good luck and stay with this for awhile!! me thinks your on the right track. Took me TOO many years to get where you are!!
specially since I am --just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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posted
Thanks for the encouraging words, jd. Nice to meet a co-regionist here. Until now I hadn't thought of myself as 'lucky,' but I guess I am!
Thanks to everyone for sharing thoughts--I find it all encouraging. It does seem like the next step (eval by LLMD and testing with abx) will let me know one way or another how to proceed.
Posts: 261 | From Nebraska | Registered: Jan 2010
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Also get tested for Chlamydia Pneumonia. It responds to antibiotics too.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
(eval by LLMD and testing with abx)
I agree. Retesting after antibiotic is called a challenge. You are challenging your body to produce
antibodies that will react with the antigens in the test. By killing some.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
re: healthy diet--thanks, I hope it does help. I've been eating this way for over 7 years and am committed to continuing on for life. It's great for my husband's heart health as well.
About two years ago I went gluten free, because at that time I was starting to feel really awful (though no GI issues at all). Since I have a brother and an aunt dx'd with celiac, I thought it would be prudent to avoid gluten.
Well, the gluten-free diet hasn't helped me feel better. However, it still makes sense to me to keep gluten out of the mix until the problem is solved so at least I will KNOW it's not that. I'm used to it now, so I don't mind.
Posts: 261 | From Nebraska | Registered: Jan 2010
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posted
Thanks to sixgoofykids and f13girl for mentioning the Buhner book, "Healing Lyme". I went over to amazon and read up on it and it sounds like an excellent resource for me to help understand what this disease is and how it works.
Posts: 261 | From Nebraska | Registered: Jan 2010
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posted
I'd suggest a test for bart - a lot of the symptoms are similar but bart is heavier on the neuro symptoms.
You can have lyme and have a complete seronegativity. I don't know how common it is. Given your symptoms though, and how long you've had them, I'd test bart before diagnosing lyme.
Clongen has a test for the whole bart genus that sounds worthwhile in your case. I'm trying to get that lined up right now.
Posts: 98 | From Maine | Registered: Jul 2009
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