not sure what to do!!!!

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gracietiger
Regular Member


Date Joined Dec 2008
Total Posts : 129
   Posted 2/10/2009 8:46 PM (GMT -7)   
i recently posted about my igenex test results, which indicated an "indeterminate" titer, and an igg with a positive 41, and an indeterminate 31.
i have almost every symptom of lyme that i read on the symptom lists, except current joint pain (i did have swelling and pain for several months, but not since) and bell's palsy.
i visited an infectious disease doc who studies chronic fatigue syndrome as a result of viral infections. he, and the five other doctors i see, believe i definitely have some kind of infection or virus due to my swollen lymph glands, stiff neck and others. this has been going on two years. my ID doc tested for me 18 viruses and bacterial infections, and we were confident that something would show, especially considering my lyme's test was technically negative. i found out today that everything was negative. i guess i tested positive at first for the hhv-6 (herpes virus six), which is related to chronic fatigue, but when they tested further, discovered it was negative. i read that 95% of people have antibodies against this virus.
so this rules out epstein-barr, all herpes viruses, mycoplasma, cmv, and many others.
so what else could this be? all my doctors separately agree that there is a viral/infectious cause, but nothing shows up??

should i pursue a llmd? i am so afraid of going down that route and losing a ton of money when my results are not strong at all. however, i am not really sure now why i would have had a positive 41 band at all. i had read that epstein-barr can cause this, but now that has been ruled out in my case. so what else could? is the llmd the wise thing to do? i mean, what are the odds, given my igenex results, that this could be lyme? i don't want to see the llmd for $800 just to be safe. i want there to be legitimate odds. i have spent wayyyyyy too much money!!!!!!!!!!!!!!!!!!

thank you all so much for your insights. i appreciate it so much!

IH8Ticks
Regular Member


Date Joined Jan 2009
Total Posts : 296
   Posted 2/10/2009 10:28 PM (GMT -7)   
Most people on this board will probably recommend seeing an LLMD. The tests just aren't accurate. I've never tested positive for lyme, but I have all the symptoms. The only test that showed anything was my CD-57 test, which showed a low number. I did however test positive for babesia. A good LLMD will test you for multiple tick-borne infections, but will also realize that none of the tests are completely reliable. Ultimately, they will make a diagnosis based on your symptoms.

dorit
Regular Member


Date Joined Nov 2008
Total Posts : 375
   Posted 2/11/2009 9:49 AM (GMT -7)   
Hi gracietiger!

what do your docs recommend to do if they think there is an ongoing kind of infection or virus b/c of your swollen lymph glands, neck problems? do they come up with anything? do they think it might be Lyme? did they test you for stuff you could have caught in africa?

Its kind of hard to say what might be an (helpful) option; I think i would check if the docs were open for lyme causing the symptoms and ask them for abx treatment to see if the symptoms go away or I would go the alternative /herbal Lyme treatment route and see if it helps me. That would probabely be my alternative to an expensive llmd, at least for a first step.
greetings, dorit

gracietiger
Regular Member


Date Joined Dec 2008
Total Posts : 129
   Posted 2/12/2009 8:57 PM (GMT -7)   
hi dorit,
my docs can not explain to me my symptoms. my infectious disease doc, who is incredible, did test me for a huge panel of diseases, like mycoplasma and herpes and such - the types of viruses that are linked to chronic fatigue syndrome and the like. i tested negative for all. so i have no explanations at all.
i am just not sure that my tests show a positive enough case for lyme. i know it is clinical and all, but it seems that many people who benefit from lyme's treatment had tested positive.

ih8ticks -i will look into the cd 57 test. i have read quite a bit about it, thank you for the suggestion.

Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 2/12/2009 9:24 PM (GMT -7)   
I don't remember what bands meant what. I will have to get out my notes.
For some reason I could have sworn that they were in the 30"s? No?
Igenex is a good lab and their test are very sensitive. It is confusing because all of the immune disease are very simular.
I would call Dr. J. in Kansas for $40 and see what he says.
95% of the population has one of the 3 herpes. Children too.
But I am most concerned about your trip to Africa. That raises some questions right there.
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."


dorit
Regular Member


Date Joined Nov 2008
Total Posts : 375
   Posted 2/13/2009 4:40 AM (GMT -7)   
Hi gracietiger!

How bad are your symptoms? You could give herbs a try.

I was asking about having been tested for stuff you may have brought home from africa because I found out that here is only one lab which is regarded to be really reliable in testing for flavivirus - diseases....I should have known earlier...! Only one example on my route to check out whats wrong with me; So a lot seems to depend on the lab, not only with lyme; for parasites the insitute for tropical diseases told me that for testing one needs to stay at them because some parasites in the stool die immediatelly outide your body so some tests give no results.
Not easy all this stuff, hm?! Martha`s V. idea about this doc in Kansas is not bad... Hope you get better; take care! dorit
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