I've recently tested positive for lyme on IgeniX Western Blot with positive IgM 23-25Kda and 41Kda. I was negative for IgG and other organisms. I'm trying to figure out what's ahead.
So....
Here's my history, and then questions, as briefly as I can.
I was first ill in the late 90s, first with joint pains and nerve inflammations, then with a serious neurological illness in 1999, when I quickly developed peripheral neuropathy, cerebellar dysfunction, cognitive dysfunction, aphthous ulcers on my mouth, and an immune rash which was not a lyme rash. I was unable to drive home from work without getting lost for a week, had difficulty doing simple tasks, like using an ATM machine. I forgot everything: the milk was in the pantry; the scissors in the refrigerator. It was scarey. I was diagnosed as having "idiopathic" peripheral neuropathy with autonomic involvement, and cerebellar dysfunction, maybe due to a connective tissue disease, although none was actually documented. At that time a Western Blot done by Stoney Brook was negative. The only abnormal blood test was a high IgM without any "monoclonal spike". That became normal over the years. Could this have been my first lyme episode?
Not happy to have no diagnosis, I went to the mayo clinic, and they agreed I have "idiopathic" neuropathy, but did not think there was an autoimmune disorder. They did a lyme and it was negative.
My rheumatologist treated me with immune suppressants, including steroids, for a year.
For about 8 years I've been active on a neuropathy board, and put up a website to help people track their own testing for neuropathy. (see below my signature, if interested)
Also, from the late 90s until now I have had chronic recurrent sinus infections, and these were treated with steroids and antibiotics, including IV Rocephin and oral ceftin, as well as two surgeries. This past January I was diagnosed with a strange sinus infection with "mycobacterium abscessus", and atypical TB-Type organism (not TB and not contagious), and took 5 months of antibiotics--Biaxin and Ceftin and Septra orally.
Two months ago my sinus guy sent me to an integrative ENT for a new look, and he re-ordered lyme testing from Igenix. At the same time he said my sinuses were clear, but I had aphthous ulcers in the back of my throat, creating a lot of pus-like secretions. The day he found the ulcers, my lyme testing came back with positive IgM and negative IgG.
He sent me to an integrative LLMD in NYC, Dr L.G., who says he treats a lot of lyme and who took a very good history. He ordered the complement and CD 57 tests, and a bunch of other immunological tests. He mentioned a SPECT scan at some point. He said he thinks I'll need antibiotics when all is done, for lyme, but it will be 2 weeks before the tests are back from Labcorp.
Today I spoke with my original sinus guy, who sent me to the ENT. He said he's had three patients test positive with Igenix this month, and one has a hx of being treated successfully for lyme in the past; the other has no symptoms at all suggesting lyme, and the third is me. He says the lab is controversial, and if we believe it, we are probably committing me to long-term IV treatment, because I've been on steroids and been partially treated with antibiotics, and have cerebellar and cognitive dysfunction, as well as peripheral neuropathy. He says if we believe the Igenix than the rest of the testing is not really important--we're committed to treating aggressively based just on it. But he thinks I need a doctor who does NOTHING but lyme.
He suggests a doctor in Hyde Park,NY, Dr RH, who is listed on the Lymenet board as being in ILADS.
So, I'd like input, please.
1. Should I only see the ILADS doctor, both, or is the LLMD sufficient, do you folk think?
2. What does it mean for IgM to be positive meeting CDC criteria but IgG to be negative?
3. Can I have had Lyme for 15 years and it's survived two months of IV Rocephin and 5 months of oral Biaxin and Ceftin?
4. Can the IgM be positive BECAUSE I get sinus infections, even though I don't have one now?
And, well, anything, anything anybody has to say that would help would be appreciated. I know we're not supposed to mention doctors names here, but perhaps it's okay in private messages, and I accept private messages. But the Dr in Hyde Park is not convenient, and the doctor in Manhattan is, even though he's not ILADS.
I guess that's all, for starters. Thanks in advance.
quote:Originally posted by LizaJan: 3. Can I have had Lyme for 15 years and it's survived two months of IV Rocephin and 5 months of oral Biaxin and Ceftin?
Since Bb replicates so slowly, some say a long abx treatment period is needed, 18 months minimum.
Posts: 727 | From USA | Registered: Mar 2006
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
I can see it under medical questions.
I don't see why it would have gotten censored!
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Also get tested for Chlamydia pneumonia and various viruses.
The board seems very active, new posts appear first and responses bump up older posts.
So maybe your post was on the 2nd page before the above replies?
Good luck with better answers from more experienced posters.
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
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posted
Thank you all for your replies. I am hoping to hear something about whether it sounds reasonable that I could have lyme after all these years with these symptoms, and if the lab is trusted enough that a good doctor would treat based on the IgM finding alone. And, of course, any advice with the doctor dilemma--I know it's forbidden to mention names here, but perhaps by private message, about whether it makes sense to travel to Hyde Park.
I don't feel ill most of the time, just that I have neuropathy, autonomic and legs, hands, a cranial nerve in the past, and balance problems from the cerebellum. And , yeah, strange cognitive issues which make me less fluent than I was normal. Even the physical act of writing is more difficult. But I don't really feel "ill" unless my sinuses are infected. The rest is just "happening" to me. It's a lot, yes. thoughts? please?
Posts: 17 | From new york | Registered: Nov 2008
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posted
question #3: yes, you could still be infected as we all have different meds combos that do or do not work for us, plus it can take many years of treatment to feel better.
question #4: a friend has terrible sinus problems including frequent infections as a result of her Lyme Disease
question#1: since you have started off with an LLMD, why not remain and see what he says once the testing is done? I went to Dr. H. for 2 years and he did help tremendously, but you may be in good hands already. Also you would have to wait 3 months to get in, so waiting 2 weeks for test results & follow up is better.
and stay away from steroids!
ESG
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
A good LLMD will treat based on a clinical diagnosis no matter what your test result is. You have a good test result, but a good fact to know is that 50% of ppl with LD test negative because the test are inaccurate.
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I am lucky enough that my doctor sent me a copy of the lab results, even though I'm not seeing him for two weeks. So...here are the important and questionable: Mine Normal
HgB normal 12.0 Hct normal 35.9 Platelets normal lymphs normal monocytes normal Eos normal Basos normal
D
The IGeneX IgM was 23 - 25++ and 41++ The IgG was 23 - 25 IND 39 IND 41 ++ 58 +
oes anybody have any comments on what these mean?
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Shosty
Unregistered
posted
I will have more to say but want to ask, first, if you have had a positive ANA in the past, and if your autoimmune rash was biopsied. Were you on plaquenil (hydroxychoroquine)?
Also, and I will explain, do you have any food allergies or sensitivities?
Your cardio CRP would show that there is inflammation going on in your body, of course, and, for me, that causes neuropathy and other symptoms.
just wondering about the evidence of autoimmunity that you mentioned...weird that your complement 4 is high...
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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"Can I have had Lyme for 15 years and it's survived two months of IV Rocephin and 5 months of oral Biaxin and Ceftin" - end quote.
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Yes. Seven months may not have been long enough to treat. Was your doctor able to address the cyst form, consider all TBD (tick-borne diseases) and, as Timica suggests, assess other chronic stealth coinfections?
Were biofilms considered?
Various strains, too, would require different treatments. There are over 300 strains of lyme. And it changes.
You ask if you could have had lyme for so long - it is not rare, really.
As always - after reading about the scary stuff - there are things to help. Yes, by all means, see an ILADS' educated LLMD for the best diagnosics and take the list of tests from Timaca's link, too.
There is much more than just lyme to consider. Please get the Singleton book as that discusses so much about how to take care of yourself (although you probably have that down pretty good) - but it also offers great information on the endocrine system and support for energy, etc.
Best of luck to you. I hope you are soon feeling much better and on a good path. This CAN get better. Really.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" - By Virginia Savely, RN, FNP-C
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- Full article at link above, containing MUCH more detailed information.
The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
- 2/3 down the page, you can download Guidelines for the management of Lyme disease
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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I'm sorry for so many posts. I can't read a lot in one sitting, so went back. (and, sorry, but I could only read portions of what you wrote - my eyes jump around - so I grabbed on some stuff that seemed most important.)
This really just caught my eye - you wrote: " . . . treated me with immune suppressants, including steroids, for a year. . . ." end quote.
In light of this, you REALLY need a good ILADS LLMD and they need to be aware of this.
I honestly don't want to bring you more sadness. However, from all I've read about steroids and their being contraindicated with lyme, I think it is imperative to see someone who can sort this out.
Steroids can make lyme much more intricate to treat. Ditto for any co-infections.
From: Lyme Disease 1991: Patient/Physician Perspectives from the U.S. and Canada - Lora Mermin, editor
by John Drulle, M.
Excerpt: " . . .Corticosteroids can last in the body for months, usually around 6 months. In many bacterial infections such as LD, damage can be done. . . ."
- Full article at link - and also see Dr. Burrascano's guidelines in a post above.
--------------
Now, again, I wish you well and hope that you can find some time away from all this to enjoy some good stuff this weekend.
posted
Thank you all for the way-overload of info!
Some answers: Yes, I've been treated with Plaquenil, around one year, 1999, for sinusitis thought to be maybe secondary to overactive immunity.
I've never had a positive ANA or shown any antibodies to anything, and I've been tested for antibodies to nerves, thyroid, parathyroid, and god knows what else.
I have no allergies, though I did have an autoimmune rash in 1999 which was biopsied and had nonspecific findings of IgM complexes.
I have had one rash since--last week. Suddenly burning, my skin turned a blotchy red. I had no idea why, other than "something I et", so I took Benadryl and it faded.
No sensitivities to anything else that I know of, beyond sneezing around dust.
I've been tested for a lot of organisms, including all mycoplasma, mycobacterium (positive in sinuses)CMV and other initialed things which were negative.
I take a multi-pronged approach to my health, taking a lot of supplements, trying to eat a mediterranean style diet, lots of fish oil, carnitine, etc.
What I care about most is this? DO I HAVE LYME?
I've had 4 negative tests now: Stoney Brook, Mayo Clinic, Quest lab and Labcorp. These tests came back last week abnormal:
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