posted
diagnosed 06/2009 both EIA and Western Blot positive, flu symptoms, severe, severe head and neck pain. 3 wks of Doxy with in a month felt great. two mons later joint pain started then stopped steroid treatment for asthma, jt pain back beg of summer 2010 and same time lyme diagnosed AGAIN ref to infect disease, 2 wks doxy then decided "FALSE POSITIVE", Igm's positive Ig's neg told need the Igg's positive. rheumatolgy work up all negative, still have severe fatigue, hand pain, head and neck pain off and on seen another infect disease spec this week, not lyme again false positive. On steroids again for jt pain, emg sched fri and very depressed don't know what to do????
posted
have you tried the melissa test for lyme or had your CD57 checked. this is how my lyme was found(besides the neuro symptoms). western blot and elisa showed nothing
Posts: 6 | From Holland | Registered: Mar 2011
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posted
not famaliar with those two tests. I am experiencing memory issues, ringing in ears, swollen glands, knee pain, occ back/muscle pain, fatigue, feel like crap, docs told me its not the lyme but so far there is nothing else wrong. feel like i am losing my mind. what are those two tests? did an llmd do yours?
posted
I know I've done so much research on this and I know i had it twice, prob reoccurance in 2010 but think it is chronic now and need to rule this out. Looking for LLMD in phila or NJ. The three sent to me by req are not avail. Need to know if anyone has a lead on one.
oh.. and PASS on the steroids before it's too late
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
IMHO - it is almost impossible to get a false positive Lyme test. Especially the Elisa. I think Dr. B. mentioned that this test is almost useless. I'm guessing because of all the false negatives not false positives.
Posts: 2232 | From USA | Registered: Aug 2009
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posted
Do I need to have new blood drawn and that sent to Igenex or send my test results to them? Cause I'm gonna have to convience my primary to run another blood test on me. Steriods are almost finished so too late there, prob why I feel so sick. and Yes the elisa test and western blot both positive. the infec disease told me first diag in 2009 actual positive early acute, treated and cured w/doxy the test result in 2010 prob was the false positive since it was unlikely i got infected two years in a row. but i know what i am feeling and am very in tune with my body and know the symptoms fm the first time infected in 2009 but the insist not lyme.
quote:Originally posted by jojolaw: Do I need to have new blood drawn and that sent to Igenex or send my test results to them?
New blood
Yes the elisa test and western blot both positive. the infec disease told me first diag in 2009 actual positive early acute, treated and cured w/doxy the test result in 2010 prob was the false positive since it was unlikely i got infected two years in a row.
Your problem is the ignorant ID dr. Most of them are clueless when it comes to lyme disease. There is a huge controversy going on and we are in the middle of it.
There's no such thing as having a positive test and not having Lyme, if you ask me. Does that make sense to you??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Just sent you a PM.
Meanwhile, you might want to try Cat's Claw or Samento. Some have found just this herb alone has helped them a lot. I took it for a while and did fine on it (no bad effects). It has anti-inflammatory properties also.
And another thing, for joint pain, I've not found anything more effective than Nettle leaves. I use Eclectic Institute nettles because it is organic and no fillers. 2 capsules and my joint pain is gone or almost gone for more than a day. I don't think the brand is what matters as much as the quality of the product you choose...I've tried Nature's Way and did not get quite the same relief.
Be sure to double-check with your pharmacist on drug-herb interactions before starting these herbs...
I hope this helps...take care,
-------------------- -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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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Don't ever go back to those drs!!! You need to get to a good LLMD ASAP! There are a number of good ones in NY, also CT. There are ones in NJ, too, but NY and CT is better IMO. More another time.
Posts: 3771 | From around | Registered: Mar 2008
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
It sounds like you have 3 positives. No need to test again (with IGENEX or any other lab). Save your money for treatment.
Have you posted in seeking a doctor?
You need a good LLMD to help you get well.
Stay away from ID doctors and steroids.
Go on recommendations and reviews from this site and/or your local Lyme Support Group. I find word of mouth from someone you trust to be the most reliable way to find a doctor who won't waste your time and make you feel worse.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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posted
Thankyou so much everybody for all your input and advice. I do feel like I am losing my mind. I do have an appt w/an ID doc that was recommended and that is on May 5th. I am going to follow thru with the EMG and the follow up with the Rheumatologist and even a neuro work up if they insist since my ins pays for it all but I will persist with taking the steps to see if this is Chronic Lyme by seeing the LLMD and also possible having my blood drawn again and sent to IGENEX because once all those results are finalized then i will confront my pcp with all this info and ask for an explanation just for the mere fact that they need to open up their minds and forget about their standard protocals. When the second ID said "false positive" i thought then why did everyone prescribe and insist the antibiotics again at that time for the second time. Seems like they don't know anything. Also she then preceeded to tell me that those blood tests are useless right now and the FDA approved new tests that they are waiting on.
Have one ques though, always heard that once your lyme positive it always show that in your blood. can anyone clarify and elaborate on this to help me understand the facts?
posted
Steroids....yes always hear that. But, curious that the one and only LLMD I have been to put me on them two or three years into my treatment. I was on them nearly a year.
And yes, he is on the rec. list and a member on this thread sees him and quotes him.
Not meaning to stir the pot here. I don't know what to believe. I am still sick.
Posts: 101 | From MS | Registered: Feb 2001
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Hydrocortisone used judiciously to support poor adrenal function is fine. It is when doctors give high doses of Prednisone that the problems with Lyme can become much worse.
So the main difference is whether one is getting adrenal support with very low doses of steroids, or whether one is getting immune suppressed with large doses of Prednisone.
Also, the reason they tell you once you get Lyme, you will always show positive has to do with the different types of antibodies.
The basics: IgM antibodies are the "first responders" to bacterial infection, and these antibodies are usually only elevated within the first 3-8 weeks of a typical infection. Then, these antibodies are converted from IgM to IgG antibodies, which then stick around supposedly forever.
So when they tell you you have been exposed in the past but are not currently infected with something, then it is because the IgM antibodies are missing or very low level but the IgG antibodies are high.
With Lyme, however, this paradigm does not work. Lyme bacteria do things most other bacteria are not capable of, namely, altering their outer surface so that it "looks" different to the body's immune system. Because of this ability to change what it looks like to the immune system, it is common for people with long-term persistant Lyme to have elevated IgM antibodies to Lyme (assumming their immune system has not been so disabled by the Lyme/coinfections that it is even capable of makeing IgM antibodies).
I hope this helps...it is very complex so don't feel bad that you are confused. And most doctors do not understand that Lyme is a different beast and conventional wisdom regarding infections does NOT apply because Lyme does not play by the same rules as most other infectious organisms (it has parasitic and viral properties).
-------------------- -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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