posted
After over a year of ill health at the age of 31...a recent diagnosis of CFS....a new concern from my neurologist that i may have something else and he's scheduling an MRI (possibly MS)...i came across Lyme info online and decided to test since my symptoms seem very similar. (physical, cognitive and emotional). I tested at my doctors office (kaiser in california) and a fat NEGATIVE. But all my research led me to test through Igenex... PLEASE take a moment to make any comments as you see fit. Im very confused being that i have a CFS diagnosis, a possible MS, and now this . I actually thought it was just systemic candida because i tested moderately high for that. THANK YOU.
IGM POSITIVE: All bands were negative EXCEPT: 34, 39 IND 31 ++ 41 ++ 66 +
IGG POSITIVE: All bands were negative EXCEPT: 34 IND 39 + 41 +++ 45 +
Now...you probably want to slap me and say...helloooooooo you obviously have Lyme you dumb broad (LOL)...but im getting brain washed by all the doctors whose advice i have seeked telling me Igenex is known for positives, dont mean i have it (although surely doesnt mean i dont), one laughed when i told him, the other brushed it off. Maybe they are right? **** i dont know..i can barely think straight i feel like a freak....my life has done a 180....there is not an area of my body that has been unaffected by whatever is attacking me. I also have an embarrassing question: When i was about 25 i contracted Syphillis from a cheating boyfriend .....i took antibiotics , retested and it was cleared. Could that be something that still shows up on tests like this? Thanks for your input everyone. Any details on what the + bands that showed up mean would be great. Happiness and Health to everyone.
Posts: 56 | From bayarea | Registered: Nov 2006
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I know you will get great help here at lymenet. Sorry I can't help with the test results, but know there are links somewhere (maybe under newbies?) that has info on interpreting them. Try a search of the board also.
I don't have lyme (my dd does), but am definately starting to get the brain fog, Not really, I just stay up too late on the internet looking for info and answers! Kind of lyme related brain fog.?
What I wanted to share with you was that I read "somewhere" that a llmd reports he got involved in treating lyme because 90% of his CFS and fibro patients tested positive for lyme and 80% of them were improved or in remission after lyme treatment. My numbers may not be exact, but they were high precentages. Keep following what YOU know and feel. The lab results are not the only important considerations in diagnosis.
I forgot (fog) did you say you have been to a llmd? Other doctors just don't have a clue! I like to think the difference could be compared to treating "aliens". Just because they have a head, arms and legs doesn't mean our human medicine will work!
Have been to the head of neurology at a teaching hospital. At first I thought he was rather knowledgeable, but then doubted him when he refused to comment on fatigue and possible lyme. Now I think maybe he was smart! He didn't say anything becuase he knew he didn't know!
Do they teach that in med school? Or maybe a class called wing-it and BS 101.
Good luck and welcome!
MommaK
Posts: 242 | From Mississippi | Registered: Oct 2006
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posted
Hi MommaK What a good wife to be researching for your husband! He's a lucky guy! I wish i had a man that active for me. Hehehe I can understand the "brain fog" it rubs off on those around us. I have a regular doc and yes, my neurologist seemed GREAT too...till i mentioned lyme. I actually PREFER my doctors tell me they are not informed enough about lyme to help me than to say YOU DONT HAVE IT or laugh. LOL I think at this point...even if i was to be soo lucky as to have my doctor willing to treat me under my insurance....I will probably seek out a SPECIALIST on my own and pay out of pocket (and i hear its sooooo expensive and not a short ride either). But with the co-infections that most of us have and with our health on the line...they would know best exactly how to treat our individual cases. Thanks for replying and enjoy researching the night away!!! Posts: 56 | From bayarea | Registered: Nov 2006
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posted
Hi- I'm so sorry to hear about your problems! Lyme was a nightmare for me, but due to finding a "LLMD" lyme doc, I have gotten over it (though of course all it takes is one infected tick...) Testing is definitely a problematic area with Lyme. And yes, for certain tests there would be a good chance that having had syphilus would affect the test results for lyme.
But the bottom line is, you have symptoms consistent with Lyme. But I take it you don't have memory of a tick bite a few days several weeks before their onset? Of course you might well not have noticed. I may not have noticed, either, except there were warning signs where I got it and my brother noticed the ticks on me. My experience is recorded here, in case that helps.
You may also want to look into the Bowen test, if they are still doing it; it is not dependent on detection of antibodies, but rather uses flourescently tagged external antibodies to find lyme bacterial matter in samples of your blood.
You should definitely be worried anout the possibility of Lyme, though. Somewhere on the Lymenet pages there is, I believe, a symptom list for Lyme. In addition to affecting the accuracy of some tests, previous exposure to syphilus may intensify some symptoms, and may also jump start the immune response to Lyme (which would be good, if Lyme i what you are dealing with.).
There are also several other nasty tickborne infections you might have picked up along with Lyme . Two of these are Babesia, and Ehrlichia.
In any case, it would probably be wise to see a "lyme literate' doc asap.
Best wishes. DaveS
Posts: 4567 | From ithaca, NY, usa | Registered: Nov 2000
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posted
Hi Lymesucks, Yup it does. Farily new here, wont repeat my story thus far, but when you start reading the posts you will see that your story resembles that of many people here. Cant interpret your test for you, after much debate and limited resources, I just sent my serum to Igenex yesterday. docs repsonses were similar to that of yours,,but I found one willing to draw and order the lab. Many peoples acvice is to find a LLMD asap. wishing you a speedy recovery!
Posts: 145 | From NorthEast US | Registered: Aug 2005
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posted
Hi Lymesucks, Yup it does. Farily new here, wont repeat my story thus far, but when you start reading the posts you will see that your story resembles that of many people here. Cant interpret your test for you, after much debate and limited resources, I just sent my serum to Igenex yesterday. docs repsonses were similar to that of yours,,but I found one willing to draw and order the lab. Many peoples acvice is to find a LLMD asap. wishing you a speedy recovery!
Posts: 145 | From NorthEast US | Registered: Aug 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
IGM POSITIVE: All bands were negative EXCEPT: 34, 39 IND 31 ++ 41 ++ 66 +
IGG POSITIVE: All bands were negative EXCEPT: 34 IND 39 + 41 +++ 45 +
I have bolded the bands that are specific to lyme disease. Some are SO specific they CAN'T BE ANYTHING ELSE.
41 is pretty darned indicative too, FYI, but could possibly react with other diseases like severe gum disease, etc.
But even if we toss that one out -- So what?
You're lymed.
Your neuro's and other specialists are dorks -- I already know that because they're giving you the famous line about how IGenex always gives positives. We just had a thread on that the other day and 'taint so. Believe me, lots of people WISH they would get a positive so their insurance company would get off their back.
Now, you really MUST find an LLMD.
These doctors are not going to get you better, or test you for coinfections, or anything of the sort. They'll relieve you of a lot of money and that's about it.
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