new diagnosis: Lyme
 

Hi All,

It's been a while since I've posted here, as my problems have seen incredibly complicated, and extended beyond pn. chronic sinus problems, back issues, too many things.

Well, I saw Dr Latov a couple of months ago, and he said my cerebellum was affected and ordered genetic tests for ataxia. These were mostly negative. Turns out that athenadiagnostics will pick up mutations, ( and I have one), but not know the significance of them. Dr L decided I have idiopathic neuropathy, with cerebellar involvement.

I saw my regular neuro, and he seemed to agree that there's cerebellar stuff, though very very mild.

I have new integrative ENT, and he wanted my infectious labs repeated, at a California lab, Igenics.

Then, this week I've gotten the feeling of a razor in my throat when I swallow, which I had in June and last February or March--each time with lots of secretions. Each time treated with antibiotics, and I gradually got better---though it took THREE MONTHS.

So, I saw the ENT while I had the razor in my throat feeling, and he says I have aphthous ulcers over my larynx, but there's not much to do for it....

because the Lyme Tests came back positive, according to CDC criteria.

He thinks this one diagnosis explains just about everything I've been experiencing, and tomorrow I see a Lyme specialist.

I don't know anything about Lyme, and right now I feel too sick to learn, but as I get better I'll be reading more.

It's late lyme, as I've had symptoms almost 20 years, and it's in the cns, which explains the cerebelar stuff.

That is, if the lab is right and I do have it. The test that was positive was the IgM Western Blot.

More to learn....after 15 years of idiopathic.

Well, this is interesting.
 

Having long term Lyme would possibility of the tremendous variety of symptoms you've had--perhaps even contributing to your spinal weakness--but as I'm sure you've gathered, Lyme is a very slippery beast to get a hold of. And, there a lot of controvery about just what serologically constitutes a diagnosis (and what may represent a co-infection--apparently, a lot of other sphirocete infections can be transmitted simulteneously with Lyme, and this makes serological testing even more difficult).

Some, of course, have therefore taken the viewpoint that Lyme is a clinical diagnosis more than a test-driven one:

http://www.mentalhealthandillness.com/tnaold.html

Are you going to pursue things further up at the Columbia reserch center?

http://www.columbia-lyme.org/index.html

serum evidence
 

Glenntaj--I had serum evidence of Lyme--meeting the CDC criteria, which is apparently the strictest. And it's pretty clear I have CNS involvement, if this is true. Still, no idea what is involved in further testing at this time, and no idea about treatment--IV because of cns stuff, or oral. I do know that for the past 15 years of illness, I've always felt best when on antibiotics, including the neuropathy. It's just that whenever I go off them, I'm ill again. Leo Galland is the mavin I'm seeing, and Igenex IgM test was the postive test.

I too have a positive Lyme titer from Igenex. Igenex has been through some controversy. Here in the Midwest, a lab result from Igenex is tossed out. Interestingly, I do have the initial diagnosis of Lyme with an EM rash and tick bite and rising titer done by state lab of hygiene in my records. Antibiotics aborted the rising titer. My Igenex lab results are still ignored. They were positive in 2000. I contracted Lyme in 1994. I went thru additional oral treatment in 2000, but by then, I already had neuropathy but didn't know it.

I have always brought up the Lyme and always been blown off.

They did do CSF fluid PCR and found nothing at this point but it is 15 years now.

I don't know what to tell you other than, I am sorry that you are testing positive for Lyme. It is darn hard to get treatment, and they won't treat old cases here in the midwest. Perhaps you have good docs and will be able to get treatment....it kind of depends on how old your case is.

I would try to get IVIG....mine has helped greatly with numbness.

Good luck to you.

As cycleops mentioned--
 

--not all physicians/facilities find the Igenex tests valid, even when their results match CDC critieria, and not all sources agree on what should be the CDC criteria.

Much of the controversy stems from which of the "bands" that show in the test are definitely the result of the Lyme organism and which may also be associated with other tick-borne organisms--and whether these bands' presence/absence may change depending on the timing/progression of the infection . . .

There's been a lot written on this, but these are among the most comprehensive summaries:

http://www.canlyme.com/flawedtest.html

http://www.mdlab.com/pdf/lyme_disease_testing.pdf

http://www.fda.gov/medbull/summer99/Lyme.html

Oh my! or, FINALLY?
 

You have been on a very loooonnngg search for the cause of your neuropathy and have helped so many along the way with what you have learned... Only to.. well....DURN IT?!?!?!
I live in a very active Lymes' area and know many good people who have it, might have it and don't have it but should? [I'm one who should've tested + but didn't, don't know why]
It is a very sneaky disease and harder to diagnose than even many neuropathies because you can 'test' positive one day, yet negative another.
From all I've read up on it tho, it's similar to PN in the long term treatments.... 'PATCH PATCH PATCH', is the best phrase I can up with. IF caught early on, some treatments can help, but afterwards...patch away. Even caught early there is always damage, it seems.
It's amazing how neuropathy is a symptom of soo many other neurological conditions... :sunchair: Relax a bit now that you KNOW what's going on and then go from there?
:hug:'s - j

Igenix
 

Yes, there's been a lot of controversy about Igenix along the way. However, they are now FDA approved, and while they believe that two different bands comprise a positive than does CDC, they report specifically when one meets CDC criteria. I think they are extremely respected by many, at this time, although people would have to have followed the literature and discover that they've pretty much won respect from CDC. They have some good articles posted.

I am aware that not every doctor will believe it matters that Igenix has a positive, but I think that infectious disease doctors, and those who see a lot of lyme, feel differently.

The most important thing moving this doctor is that I have SYMPTOMS of lyme, in addition to the titers. I think he'd treat me for lyme even if the blood tests were negative. They have a high negativity rate, and are supposed to be used to AID diagnosis, in the face of clinical findings.

So, I've had joint and nerve problems, eye problems, skin rashes, neuropathy, and cerebellar findings. Basically, there is no one illness which accounts for this other than lyme. You can try to pin it on an auto-immune disease, but nobody's ever been able to find one. I ALWAYS feel better when I'm on antibiotics. I think these are the facts leading this doctor towards treating me.

cyclelops: I'd recommend you look for an "integrative" internist. It seems they respect the symptoms as well as the labs. I've having a vastly different experience of MDs as I've been getting referred to docs who label themselves "integrative". Cyclops--do you have symptoms that are now undiagnosed? Does lyme explain them? Are you not getting treated for something treatable because the lab has a bad rep? Think about this: you might be being denied life-saving treatment.

I had this experience with my parasitologist. He's an old-timer who looks at his own specimens. He does a sigmoidoscopy, gets some stool, and then goes into his lab and looks. His rate of finding ova and parasites is a hundred times more than any lab around. From what I've seen he treats people who are not being treated by mainstream docs who only listen to quest or labcorp, or the local parasite lab, which is just as bad. His patients get better. I'm one of them. (My doctors refused to treat me for tapeworm, even when I SAW the tapeworm, because the routine lab didn't find it. Dr Cahill found it, treated me, and I got better. My mainstream docs just shook their head--maybe getting better was a coincidence. Yah, right.)

Anybody here who is considered to have idiopathic pn and has a positive Lyme test ought to think long and hard before letting anybody ignore the one treatable cause, which could lead to more illness.

I'm quite happy there is something to treat. I don't care of some doctors hold their nose. I've found some who respect the clinical picture as well as the labs.

Also, most Lyme sites use IgeneXs testing as the benchmark.

EVERYTHING I READ SAYS THAT ACCEPTED WESTERN BLOT CRITERIA MISS TOO MANY PATIENTS,

http://www.mdjunction.com/forums/lym...ing-lyme-tests

http://www.canlyme.com/flawedtest.html

IgeneX-what they say
 

Tick Specialty Labs: Too Many Positive Findings?

They Save Lives

By James S., MD, MAR, PA, DABPN, DABFM

I asked Dr. Harris, from the internationally respected, IGeneX labs, to reply to the dubious comment that IGeneX "only has positive findings."

This is not valid for many reasons. First, many physicians using IGeneX get negative results. Further, IGenex has done quality assurance studies with appropriate negative findings in uninfected controls. And the company, as you can see below, has done a great deal to be certified and licensed.

The "all results are positive comment" is lazy, sloppy and uninformed. Lyme is the leading vector illness in the USA. A positive result should not be rare.

*********

IGeneX, Inc. is a reference laboratory located in Palo Alto, California specializing in Lyme disease and other tick-borne diseases. We take pride in the quality and diversity of the testing that we perform on samples from around the world.

IGeneX is licensed by CMS (Centers for Medicare and Medicaid Services) and is strictly regulated by CLIA. We are licensed in all states, including California, New York, Pennsylvania, Maryland, and Florida where special licensing is required.

The laboratory is inspected by these state and federal agencies on a regular basis. A Ph.D. consultant is also used to ensure that our laboratory is current with all the compliance regulations.

IGeneX participates in all proficiency programs required, such as New York State. Independent specialty laboratories, such as IGeneX, who have a narrow focus in testing, typically are not certified by CAP, but we do participate in the CAP Proficiency programs.

IGeneX has been testing clinical samples for over 11 years. The staff consists of a Laboratory Director, an MD Clinical Consultant, and several other MDs who also are licensed Clinical Laboratory Scientists who manufacture and perform tests. The personnel responsible for the test quality and performance are all licensed Clinical Laboratory Scientists, most of whom have been with IGeneX for many years. Our Research team is comprised of qualified PhDs and MDs and experienced Research Associates.

Customer Service is our main goal and the office staff is always willing to assist our patients and physicians. We take pride in our trained personnel that have worked together for years.

IGeneX is continually working on the advancement of existing tests. In addition, IGeneX is committed to designing and researching new technologies and opportunities. Our goal is to give Lyme patients and their physicians state-of-the-art tools for diagnosis of Lyme and other tick-related diseases.

--------------

[Steve Andison Comment] The Federal Center for Disease Control periodically ships identified samples of what they know to be positive and negative samples to IGeneX to determine the accuracy of their testing procedures. Their accuracy rate for both positives and negatives is unsurpassed by any facility in the United States and with their state-of-the-art techniques and equipment, they may be the most accurate lab for diseases carried by ticks.

WESTERN BLOT IGM AND IGG RESULTS EXPLANATIONS FROM

DR. C IN MISSOURI, PLUS BABESOSA TEST NO. & MORE!!

A MUST READ FOR ALL from LYMETOO/TUTU !!

http://flash.lymenet.org/scripts/ultimatebb.cgi? ubb=print_topic;f=1;t=042077

Did your insurance company cover Igenix?

If not (and perhaps, even if it did), do you know how much the test cost?

I was tested with Western Blot and it came back negative. I was tested in part because I had a couple strange circular rashes around joints -- one on my hand -- that came and went without explaination.

I suspect if I tried to argue for an Igenix test, my insurance company would say no.

It was out of network, so the lab called to see how much Oxford paid, and I paid the difference. It was a couple of hundred dollars. That included all tick-borne diseases, since if you have one, there's a good chance you have another.