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.

Liza

I would expect that my Igenex panel would have been positive, as I had a physician at a large clinic examine me at the time I had Lyme. He called in the entire staff to look at my EM rash. Stating, "Now, ladies and gentlemen, this is an EM rash. This is Lyme." I had blood drawn and my titer was rising.

I was given amox. 500mg 3x per day for 20 days. I don't think that was sufficient.

Later, in 2000, I saw a LLMD, and he ran the Igenex test, and also interestingly a T cell count, of Natural Killer Cells....mine came back extremely low ( common in Sjogren's). He gave me some orals, and after 6 months, I considered myself pretty well sterilized.

I never got IV.

Does my current PN relate to Lyme? I don't see why not. It is unprovable, so it isn't pursued.

In 2004, I had CSF drawn, the biggest sample this neurologist ever took, and....they did PCR, and found no DNA from Borellia Burgdorferi. An infectious disease specialist did this stuff. It came back clean.

Case closed....a cure so to speak.

The question is, did it alter the immune system??? Is what I have Post Lyme? It behaves much like a prolonged, subclinical Gullian Barre. It responds to IVIG. PN is documented to occur after Lyme in a Post Lyme Syndrome, so is Dysautonomia.

I have been under the care of a good tertiary clinic and been to Hopkins. No one found my Igenex lab work worth pursuing. I have the postive bands specific to Lyme, tick bite, EM rash, physician diagnosis at the time of the disease. I know the day I scraped off this tiny teenie 'scab' off the back of my thigh, thinking 'Where did this come from?"

Would I like to try some low dose antibiotics?? Yes. I would not tether myself to any long term IV antibiotics, and that seldom happens anymore. It does not happen around here. Insurance companies will not pay for IV treatment in cases like mine. If you come in fresh, with Bell's Palsy or some other huge neuro finding....you'll get IV for up to 6 weeks.

However, one thing that is very important.....be careful with steroids. If that bug is hiding somewhere...steroids don't help. I had steroids for my neuropathy and it was a big mistake.

I think Lyme may be a bit like strep. It goes away eventually, but it leaves havoc in its wake.

Since you have not been treated, you should pursue your positive finding, and hopefully you can get treatment. A positive titer is not indication of active disease. I would insist on IV if you can get it.

I still have positive titers for rubella and varicella (chix pox) and I had those as a kid, so many physicians will tell you, 'Yep, you had it but it is gone now. Your body did a good job defeating it'

Lyme is a very unpopular subject with physicians. My neuro admits, what is going on with me, could be related to Lyme. I do have a spinal injury that is inaccessible, TBI and Sjogrens. It is a tangled web.

The moral of all this, Cycleops, is that it seems wise to always have an LLMD on board. If a LLMD thought your pn was from lyme, and that another coures of antibiotics was going to help stop any advance of it, I'd go for it. I know the CSF is RARELY positive, even in late lyme. The organism just doesn't persist there, and antibodies are hard to locate. So I have learned that a negative csf does not rule out cns lyme. And also, because we all know that peripheral nerves do regenerate, once whatever is killing them is removed, it could be that more antibiotics would halt your pn, and make it possible to regenerate. Just a thought. I'm not an expert on this stuff....only at the very beginning.

But I don't know that the amoxicillin would have gotten it. It's not one of hte drugs of choice, as far as I know. Perhaps someone else knows better---it wasn't mentioned to me.

My thinking as of today: One cannot have "idiopathic" peripheral neuropathy in the face of a diagnosis of past or current lyme disease. One must attribute the neuropathy to the lyme, and treat accordingly. If the neuropathy progresses, the lyme is likely inadequately treated. Also, it is unlikely that a person has both Sjogren's and Lyme. While possible, it's more likely that the symptoms attributed to sjogren's are due to inadequately treated lyme. The importance of thinking in this manner is that both idiopathic neuropathy and sjogren's are serious diseases without good treatment. On the other hand, Lyme is treatable. It may be difficult to treat adequately, but it worth the try with a LLMD.

My LLMD was seen before I knew I had PN, and if I had taken the full dose of flagyl he gave me.....my PN would be abysmal. There is no way any organism could survive the slew of stuff I got, tetracycline, amox, Zith, flagyl, etc. I puked for months, not to mention the other end. Now my LLMD does something else. Do I blame him...nah, not after the Feds raided his office. The Feds are on the case of LLMDs like crazy. Insurance refuses to pay for IV. Doctors are simply not interested unless you come in acute.

My mainstream docs admit, part of my problem could be the result of the old infection.

My current research neuro agrees that BB causes PN. The theory is like strep, causes rheumatic fever, like Polio causes Post polio.

After 15 years, I no longer have active infection. I have antibodies to prove that at one time I had active infection, just like the rubella and varicella. CSF was examined for PCR, that is the polymerase chain reaction to see if there is any trace of DNA from the organism. They did it on blood too. They could not find any DNA traces left.

That said, I don't see why it can't hide in tendons, cartilage etc. No one biopsies those.

We have no LLMDs close by. I had to travel 1,000 miles, and pay in cash.

Your case is different. I don't know what bands you have positive, when you got sick etc. Pursue it, for sure. You may be active.

I am a 'chronic lymie'. I live in an endemic area.....where I got this in '94 was more like pandemic.

I think if many people were tested by Igenex they would find many more cases. Most labs do only IgG response, totally ignoring that a female has a different immune system, our IgM system is more active. Why? We carry a fetus. The differences between male and female immune function is evident yet tests are based on male immune functions. 8% of those on heart transplant lists test positive for BB. I have an enlarged LA, which is 'not that important' to the cardio.....I dunno, makes me feel lousy.

Igenex does do a more thorough job than the one size fits all tests....however, try telling docs this. Most won't touch Lyme with a ten foot pole and I live in a state where we have tons of Lyme. I should have been more proactive and insisted on IV back in '94.

The germ has many different forms and it is hard to bust.....but, I think, at this point, it is moot for me. My immune system is messed up, which Lyme does. It is notorious for messing up the immune system.

My dogs get better surveillance and care for Lyme than people do....every year they get tested. My veterinarian is appalled at my situation. They can't treat me tho.

PS--If my Lyme is active, I've probably had it for 15 years, and in the cns. So who knows?

Oh, I think it is possible to have Lyme and Sjogrens. I may have had Sjogren's prior to being 'ticked'. I have a number of conditions that cause PN. IVIG has totally done away with numbness, which was profound. I would be the first one to say Lyme caused this mess. At this point, they won't do anything for me.

I know the exact dates of my Lyme, it is on record...I even recorded my temps etc. I don't think they killed it at the time....however, later, they had to have done away with it. By then, I had symptoms of PN and didn't know it.

1994 was a Lyme epidemic. That was when I got it. I lived in an area dripping with ticks. I would pull 20-30 wood ticks off my dogs. Never saw a deer tick there tho. Once we went for a picnic and saw smaller ticks....duh we thought they were 'baby ticks'. I probably got mine sitting on the couch, probably a tick brought in by a dog. Never saw it. Deer ticks are the size of a pin head.

If you have had Lyme for 15 years, it will be interesting to see what comes back on PCR testing. Also are they going to treat you with IV? Is your IgG positive? They give more credence to the IgG.

I assume assays done at other places were negative (as were mine).

I agree that there is no idiopathic PN. I don't know where you live...I hope it is out east. That is where you can get treatment.