Topic: Can I Still Convince Myself I Don't Have Lyme? :(
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Well...the moment of truth arrived today. I had my PCP run a new Igenix WB IgM and IgG test a few weeks ago. My first one, prior to any antibiotics, was done in May-08 (9 months after I stopped working due to my health issues).
Old Results (May-08)
Igenix Negative / CDC Negative IgM 23-25++ 31 IND 41 IND 58+
Igenix Positive / CDC Negative IgG 23-25 IND 31 IND 34 IND 39 IND 41 ++ 45 + 58 + 83-93 +
If I wish hard enough, is this not Lyme The government says I don't have it. I only have 4 of 5 required IgG bands Have I really went mental and have 'anxiety-only' issues? A sad day truly.
For my sake, I really hope the faith people put in Igenix here is warranted. I hope my ID doc is not right about doubting their accuracy.
I am SO mad the 41 band didn't go + on my IgM. My chance perhaps at IV antibiotics. How cruel.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Sorry Seek, don't lie to yourself.
Please find a really good LLMD, I'll let ya know how my appointment goes in TWO days with the LLMD we discussed!!!
Amazing what a few abx will do for your immune system!
An LLMD won't base their decision on IV antibiotics on test results. Hubby has had several different IV antibiotics and he only has ever had band 41 positive once on many many Western Blots from many different labs.
As for insurance coverage -- that depends on the company and even more important their relationship with your doc. Some docs have more experience and will go the extra mile to get insurance to cover IV's. It is a paperwork issue and knowing what codes to use etc. And how to appeal a negative decision.
I think it is time to get serious about your Lyme treatment. You have been tested to death. It is time to accept the diagnosis and move on.
Sure there may also be viral issues and other factors involved in your illness. But without Lyme treatment it is my opinion that even strong antivirals may not do much to improve your overall state of health.
If you do not respond to antibiotics then it would be time to pursue other issues. But your immune system may recover enough to knock out the viruses without specific treatment.
This is not medical advice, just my opinion based on hubby's experiences.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Thanks Bea. I'm with you. Seeing this on paper FINALLY made it click. I agree with all you said.
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
Consider yourself very lucky....Some of us never had even THAT clear of a WB. Mine was not even close.... only one positive band on the ENTIRE IGeneX and not even lyme-specific. I'm the one who should continually be doubting lyme. Actually, I did for the first year of treatment and then since I've gotten better compared to where I was, I don't doubt it so much.
You've got lyme. Doesn't matter what the CDC thinks or doesn't.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
Seek, looks like Lyme to me. I was dx in 11/08 and I'm just now starting to move past the denial phase. Its a hard thing to accept that the medical community/government would abandon us so completely, but its true.
Posts: 55 | From New York | Registered: Nov 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Looks very suspicious of Lyme to me. I would assume Lyme. Who cares about band 41...you have 31 and 34 which are both very Lyme-specific.
You seem to have strong IgG response as well, which is considered a "good sign" that your body responds well to treatment. What anitbiotics did you take, because whatever they were, I want them! I would love to have a robust IgG response like that.
I remember you saying Clindamycin....you think it was the Clindamycin? Something else? Thanks!
Take care, and hope you feel better about your diagnosis. I have been CDC positive IgM too, twice, and I doubt the diagnosis too, so that is normal to doubt it. Just listen to your body and give it what it wants, whether that's more abx or whatever.
Posts: 4590 | From Midwest | Registered: Jun 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
My mother-in-law researched on the net and sent me this article to consider...
Oh boy. Lymenet is getting BAD marks from the CDC. Why can't it just be a gallbladder issue? lol.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Hoosier51, sorry to ignore your question. I look these antibiotics over 5.5 months: Omnicef, Zithromax, Biaxin, Ceftin, and Clindamycin. 90% of my treatment was Zithromax solo.
I also took some Malarone and a few drops of Mepron. lol.
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Do you want the truth or do you want lies?
If you are really ill, you will want nothing less than the truth.
If you are really ill, nothing less than the truth will serve you.
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Truth Keebler. I'm just trying to convince others. What's new? lol.
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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By the question (Can I Still Convince Myself I Don't Have Lyme? ) - it sounds like you are asking us to convince you that you are not ill.
I know the information can be confusing. But, if you continue to go by the CDC guidelines and see your ID doctor, that will not serve you.
Trying to convince others ? That is highly over-rated. Believe me, that rarely works. When you have come to peace with your mind about the situation and what needs to be done - that is all that matters.
I hope you can find the very best and true expert to work with you to regain your health.
nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
seekhelp, if you are trying to convince others, and we all understand the complusion to do this, go to the top - start gathering scientific and medical studies on Lyme disease and coinfections. They are in abundance and the vast majority support the case for Chronic Lyme and for long-term antibiotic therapy.
There are many studies referenced in the Lymebrary, on lymeinfo.net, canlyme, etc. - and in the archives in the forum. There are several people who have made it their mission to gather these studies here.
I would highly recommend getting intimate with Google Scholar and PubMed, and bombarding these skeptics (it's completely understadable that they don't get it yet) with information. The truth is on our side, it's just taking a long time for the truth to get out into the public mindset.
Remember, there was a time people thought the idea of "germs" they couldn't see, that caused illness and debility and death, was insane. There was a time that people laughed at victims of Multiple Sclerosis, and labeled them as malingerers and fakers, and said that it was all in their head. These times weren't so long ago.
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Truth Keebler. I'm just trying to convince others. What's new? lol.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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I also think it's time to just let people go. If someone needs you to convince them that you are ill, then let them go.
We should not have the burden of proof when we already have to search far and wide to understand and then be able to find treatment.
You can offer them certain books or videos but then just let it go. It takes important energy away from your job to have to defend yourself.
posted
Band 83-93 alone means you have Lyme .. with NO doubts. It is the DNA of the Bb. Go read Dr C's WB explanation one more time!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Seek,
I totally agree with Keebler. Something else that you may want to consider is "when we live in other peoples opinions it keeps us in jail".
Go with your own strong intuition and truth. It's almost akin to trying to get someone to like you. I decided not to discuss this with my sister anymore because of the opposition.
It makes me feel a lot stronger when I don't have the need to convince anyone. It puts you in the drivers seat. I hope you can resolve this and put yourself on the road to recovery,
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Thanks for the good advice everyone. I agree getting better is enough on its own w/o trying to win personal battles.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Alv
Unregistered
posted
yes consider yourself lucky..my son and daughter born with it...barely had 1 or 2 bands only ..and I garanty you their load was very high ...
I am sure now after treatment they will show more..as their immune is fnctioning better...
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
It was a lottery I prayed never to win. Like all of us I'm sure.
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Have I really went mental and have 'anxiety-only' issues? A sad day truly. 
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