posted
After a few weeks, more like about 2 months, of discussion, and a neg. ELISA test, and ongoing random muscle pain (my only symptom BESIDES occasional muscle twitches at least once a day) my mom said I will have my blood drawn to have the IGG and IGM western blot's done at IGenex labs.... but onto some questions...
THE biggest complaint as been muscle pain. Some times its only ONE arm or ONE leg... sometimes both legs and one arm.. sometimes legs and arms and shoulders feel "tired" "achy" could be used to describe. Sometimes it really bothers me and sometimes I barely notice it... could this be caused by lyme and fluctuate like this?
I do have random chest pain but it rarely happens nymore (in the past month mabe a month and few weeks)
Usually at least once a day I have muscle twitches somewhere, be it the leg, upper meaty part of the arm (most common) or in my cheeks etc. Very slight tho nothing crazy.......it usually only lasts for a minuite or 2.
I had a large red circular rash WITHOUT a red spot in the middle with a fever of 99 or something like that during the rash... this happened about 6 years ago, haven't really had any medical issues since then. I had a 2-3 month bout of diarrhea last winter with NO EXPLAINABLE cause, had all the blood tests done for parasites, all neg.
I was worried the diarrhea would never go away when I had it, but one dad it did (for the most part) and now I worry my muscle pain will never go away.........
I am a male, 19, 5 foot 3" and about 105 pounds, slightly muscular otherwise healthy. Don't really exercise, dont exert myself enough to cause muscle aches...
is the IGM and IGG western blots the (2) tests I should have done at IGeneX? How accurate are these for lyme togeather?
I don't think I am gonna do a trial run of ABX. SHOULD I? How many months can I go on without ABX? A few? My symptoms havent gotten worse over the past month, but they havent gotten better either. There is some doxy on ebay "labled for fish but safe for human consumption" that I may purchase if I have to, I think they are 100mg each, 100 pills/bottle.
IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
Sounds awful Lyme-ish to me. When are you getting the IgeneX test done? If you take abx you need to be off of them for I think a few weeks before testing. The fish abx are the same doxy you would get at a pharmacy.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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posted
DO NOT FOOL AROUND BUYING ABX ON EBAY! God knows what is really in it.
The ELISA test is essentially worthless, missing 70% of serum positive samples. Whatever Dr gave that to you clearly knows NOTHING about lyme.
It definitely sounds like you have a high probability for having lyme. The rash doesn't HAVE to be a bullseye (mine did not). But the bullseye is very characteristic.
The pains and especially the twitching, if you have lyme, mean that it's gotten into your nervous system and possibly your brain. That is not good news.
You could also have bartonella, and babesia, both are very common in the same tick that has lyme.
Make sure the Igenex test includes the panels for co-infections. This is essential.
The tests are pretty good, and Igenex is the best, but the Dr looking at them needs to be expert in reading the tests. The tests are not enough alone. You need to be evaluated on your symptoms (even the CDC says that).
But most importantly, find a Lyme Literate MD from the Seeking a Doctor discussion. Do NOT go to a regular MD or an Infectious Disease MD if you want to be taken seriously.
I would advise to do this ASAP. It's probably not going to get better. It could get MUCH worse.
Good Luck,
James
Posts: 872 | From New York City | Registered: Jun 2008
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posted
HUH. Well my mom is paying out of pocket for the tests, and IDK if she would want to dish out additional 100's for other tests....
Could I get them done IF lyme is pos?
I can't really get a lyme lit. doctor right now unless the IGENEX tests are positive..... everything isn't gonna be easy for me as far as finding a doctor, etc.
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Sounds like it could be Lyme, especially the way the pain migrates and comes/goes.
Also, parasite tests are not accurate. Don't rule out parasites because you tested negative for them. Most of us with Lyme seem to have some kind of parasites.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
some people have gotten some insurance reimbursement for igenix testing by submitting it to their company afterward, just an fyi
Posts: 207 | From NH | Registered: Jul 2009
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Try to talk with your mom about getting a lyme literate doctor, whether the IGENEX tests are positive or NOT --
Because although the Igenex tests are the best around, every lyme blood test can have false negative results -- including the best lab for testing, Igenex.
That is why lyme is a clinical diagnosis. Your rash and symptoms sure sound like lyme, and you should not miss the chance to get proper treatment due to the inherently inaccurate tests.
Having said that, you certainly should go ahead with the Igenex tests, because although there are many false negatives, you can be sure if you get a positive test that you have lyme.
Please talk with her about seeing a lyme literate doctor!
Posts: 2557 | From home | Registered: Aug 2006
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I think if you did not want to go to doc and lie
for a script for a trial for a challenge. It may
help to take cats claw and coconut oil to induce
some antibodies. But I don't know for sure if it
would work but I do think it would be better than
nothing, depending on how long you have been
sick. It takes @ 3 weeks to get a response from
initial infection. If you have had this 6 years I
would expect it to be well hidden. If you get
worse on the cats claw and coconut I think that
will be your answer. Meaning it is damaging them.
Just another possible option and by no means proven.
-------------------- 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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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Cats Claw is powerful to us Lymies as well as other alternatives. I would read the many posts to help. It is not BS.
-------------------- 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
im talking about the electromagnetic stuff causing issues
not the cats claw...
so taking cats claw prior to getting the IGG and IGM western blot's done wont cause a false neg or anything would it? Where can I get cats claw at? is it the best immune booster besides ABX? How does vitamin C compare?
posted
AS IT TURNS OUT the large tower built about 4-5 years ago about a mile to 1.5 miles from my house is a mobile phone tower..... but I wasnt having any issues until now. I wonder if this electro whatever could be doing nything...
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
If you've had Lyme for 6 years, you don't need to rush into treatment. I would wait until you get the Igenex test done before starting anything new, just to be safe.
As others have said, I would never buy medication on Ebay. You just don't know what you are getting.
The pain migrating is a classic Lyme symptom. My pain specialist said whenever he gets a patient referred to him with unexplained pain that moves around, he tells them to test for Lyme. And this is not a Lyme-literate MD.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Yeah, the random (uncharacteristic, weird) chest pain was one of my first lyme symptoms...
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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