BackinStOlaf
Frequent Contributor (1K+ posts)
Member # 23725
posted
Hi Everyone, I have been reading about this disease a lot lately and can't believe how difficult it is to get insurance coverage for it and how much patients have to go through.
I am learning about blood testing procedures and Western Blot etc. It is all so confusing to me. I have had peripheral neuropathy for the past 4 months. The tingling and hot numb-ish feeling started in my left hand and foot and over the past few months has spread all over my body. I had blood tests done(testing for autoimmune and lupus), brain MRI, HIV/syphilis test done and everything is fine. I had a Lyme test done by lapcorp and the ELISA came out equivocal so they did a Western Blot. The IGM antibodies were all absent but the IGG was reactive for p41 and p66. (cdc negative)
From what I have been researching, 41 is the most common (even in control groups) and 66 is cross reactive with many bacteria and is not diagnostic. My doctor got the results and she said she is not a lyme expert but she think i should go to an infectious disease doc. To her, the results looked fishy.
I am 30 yrs old and live in NYC but go to the Hamptons every summer. Don't remember a tick bite and never had the EM rash.
I don't have all the harsh symptoms you all have like joint pain and extreme fatigue. I just have the tingling and once in awhile my ear will ring. That has happened to me occasionally over the past 10 yrs or so (usually after a loud concert) but there have been no loud concerts in my life for a long time
My question is, could I have Lyme with my blood results and my few symptoms? From what I have read, it seems way way worse than what I am going through. Should I invest in an Igenex test? can I order it myself or have my primary doc order? I want to make an appt with Dr. M in nyc but he doesn't take insurance as with most LL docs. The anxiety of my blood results is making me crazy!
I have also had chronic yeast inf. for 10 years with no viable cause as well. I would be extremely scared to have to go on long tern antibiotics because I am fighting this issue as well.
Anyway, thank you for reading and any insight is much appreciated!!
-M
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
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posted
Lyme can have many presentations and can get worse. I would first do everything you can to get rid of the chronic yeast. Yeast itself can cause a multitude of symptoms.
Lyme is treated clinically, meaning based on symptoms, so you need to get rid of the yeast symptoms. Perhaps your heath complaints will be solved by that.
The Yeast Connection is a good book on yeast.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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BackinStOlaf
Frequent Contributor (1K+ posts)
Member # 23725
posted
Thank you sixgoofykids. I am actively fighting the yeast right now too. Been on the anti candida diet for the past few months and am taking many anti-fungal herbs etc..but this tingling feeling all over is such a mystery
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
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BackinStOlaf
Frequent Contributor (1K+ posts)
Member # 23725
posted
Is this board only for people who were already diagnosed? or can we ask questions about diagnosis? I don't want to offend anyone- I am new
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
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MDW005
Frequent Contributor (1K+ posts)
Member # 22706
posted
This is where I started. When drs wouldnt listen
and all tests came back normal, I turned to the people here.
Everyone has an opened mind have been there and done that.
So you are probably in a good place right now.
The people here helped me feel I wasnt going crazy until I got a dx.
Good wishes for you.
-------------------- God's promises mean you always have something wonderful to look forward to. Posts: 2150 | From Georgia | Registered: Oct 2009
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posted
I've been positively diagnosed with Lyme and am having a horrible time trying to get my daughter tested. Her pediatrician is cooperative, but it's like pulling teeth trying to get in with the infectious disease doc. What struck me about your post is that her first Western blot came back similarly to yours -- positive 41 and one or two other bands but not enough to make a positive diagnosis. I'd say DEFINITELY go for the Igenex tes. Theirs is much more thorough than others -- Labcorp, for example, just showed "abnormal" bands on my daughter's Western blot, but Igenex had four different levels of results: negative, indeterminative (or something like that), single positive or double positive. I showed several bands single positive, several double positive, and a few indeterminative, which gave an overall positive result.
As far as I know, you need a doc to order the test. Print out literature so they know that Igenex has the most accurate results, and ask if they could order the test through that lab even if it's not their "regular" lab. Beware -- that lab may not be "in network" on your insurance, so you could end up paying for the test, but it's well worth it. I think mine was about $130. Just find a doc with an open mind, print out the literature for him/her to read, and have them order the right tests.
Good luck!
Posts: 39 | From Colorado | Registered: Dec 2009
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posted
BTW, re symptoms, I didn't have joint pain until I STARTED treatment. My daughter has headaches and fatigue. I believe that, even if you don't have the "classic" symptoms, the more testing the better. I don't know when I was bitten by a tick, and don't know if my daughter was, either, but we have suspiciously similar symptoms and I have tested positive. Keep searching until you find a reason for your symptoms!
Posts: 39 | From Colorado | Registered: Dec 2009
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
quote:Originally posted by BackinStOlaf: Is this board only for people who were already diagnosed? or can we ask questions about diagnosis? I don't want to offend anyone- I am new
Hi BackinStOlaf,
It's nice to have you here, although I am sorry you have to be here, if you know what I mean.
Anybody can ask questions and get advice. Unfortunately, we all know too well how hard it can be to get a diagnosis and find someone, anyone, to listen.
If it were me, I would test for Lyme, and yes, I would suggest Igenex testing. I base my reponse on the time you spend in The Hamptons (tick infested area!) and the tingling symptoms you have. All of us have varying degrees of pain, unusual neurapathy, physical and mental health issues, etc., but the one thing for certain is that Lyme does not go away on its own.
For years I endured odd tingling sensations in my lower jaw and left breast. Doctors didn't have any idea what was wrong with me. It progressed to the point, several years later, that I was completely housebound and unable to do anything much.
Of course, while an LLMD is the best person to determine whether or not you have Lyme, the Igenex test is an excellent starting point. An LLMD will make a diagnosis based on a clinical analyis, probably in conjunction with the results of your Igenex, test. But, the Igenex testing is a good place to start.
Others will be better able to explain how to get the test done, b/c I had mine done through my LLMD. I think you will need a doctor's written order otherwise.
As for the yeast issue -- a lot of us suffer from yeast problems since it commonly goes hand-in-hand with abx treatment. Your doctor can prescribe meds if you need them in addition to your herbal treatment.
Best of luck to you. Please stay vigilant about ticks and your health. This disease can creep up on a person.
I should also mention that if you decide to see an LLMD, you can post a request in "Seeking a Doctor" and someone will come along and give you a referral(s).
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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posted
Nellie... Why would you want to see an infectious disease dr? They would be the LAST thing I would want to see.
Find a really good LLMD in order to get well.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
66 and 41 combined with yeast, an equivocal ELISA and only a few symptoms. Sounds "just" like another post earlier today. My advice is the same. Yes, invest in an Igenex IGG and IGM. Your primary can "sign off" on the test and provide their fax number for the results. You can call Igenex and ask them to send a test kit to your address.
It does sound like Lyme Disease to me based on the minimal evidence, but of course I would want more evidence, just like you. You'll need to see a good LLMD. E-mail me and I'll send you a list of doctors for whichever state you're willing to travel to.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Talk to this girl who started this post. She's in a very similar situation like you are. Sometimes it helps investigating together since you both have the same motivation -- to find out whether it is or isn't Lyme Disease.
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