I will only comment on #3.

We have had 18 years of going to doctors and getting pooh poohed on every question. Especially when I told them that Alan's mom had GBS. Absolutely every one said "oh it can't be connected to CIDP".. Really!!!!

The very best one was the neuro who spoke at one of the neuropathy meetings and when I asked her "what would you say if I told you that my husband's mother had GBS, would you just say automatically, "Oh that can't be connected, you can't inherit neuropathy, blah blah??"

She replied "I would never be so arrogant as to say such a thing". SHE ACTUALLY SAID THIS. I loved this doctor. She listened.

And what about when Alan took a blood test for Lyme (which no one ordered in 18 years). And two our of the 5 came back positive and when I questioned this, I have been told 'oh, it means nothing".

Well, it doesn't mean NOTHING to Alan. This man now thinks he has Lyme Disease. He watched a tv special and he has the symptoms. This girl test negative for all five things that are in the test, she then went to Spain, they took 3 vials of blood and guess what ??? She has Lyme Disease. They gave her antibiotics for over one year and now she is symptom free.

Do I think Alan has Lyme? I have no idea because we dont' have any information yet. But you better believe that the next doctor appointment that involves blood tests, Alan is telling his opinion to the doctor and hopefully they can run a better Lyme Test or take 3 vials of blood or do WHATEVER they are supposed to do to make sure Alan does not have Lyme Disease.

He is convinced that he has this. He said "yeah, I know I have autoimmune stuff going on, my theory is that it's the Lyme disease that caused it".

So we are still pursuing this avenue.

Wouldn't it be a *****, if after all we have done, that this man turns out to have a thing that could have been fixed by taking antibiotics??

I'll update.

Melody

To me, a good doctor is someone who doesn't overprescribe medications and tests.

Hi Mel

I have had Lyme. I distinctly remember scratching off a tiny scab, which was a tick, that I didn't know was there...a few days later the site got hot, then red, then over a few weeks, turned reddish purple, grew to about 4-5 inches in diameter and the center cleared out. I felt crummy, but even way back then, 14 years ago, felt crummy. I went to the urgent care clinic, told the doc I had Lyme and he laughed..."Where do you have this Lyme?" Well, I stood up and showed him the back of my thigh and there it was in its glory...He said, "You do have Lyme Disease..." Out he went and had the entire staff in to look at the rash....classic Erythema Migrans. They took my titer and it was rising, it was still below the cut off, but getting up there...then he gave me oral antibiotics, Amox 500mg three times per day for 20 days. That aborts any further immune response...in other words, your immune system doesn't make antibodies anymore once you start the antibiotics.

Rash went away, I still felt crummy but my titer never reached the level it has to reach in this state to be considered Lyme, even tho, I am a diagnosed and likely logged case of Lyme.

I did get more treatment 6 years later for over 6 months, so is my PN due to Lyme...who knows. I have a 5 positive IgM bands, but in our state IgM is not considered. It is in New York. All a positive response means, it that you were exposed to Lyme or Borrellia Burgdorferi and your body produced an immune response.

Glenntaj knows a lot about immune mimicry and his theory holds some water. I have researched the heck out of Lyme Disease for over 10 years and yes, it can cause PN but there is no research out there that says treating post Lyme with antibiotics will stop PN. Also, they should have looked for BB on PCR in Alan's spinal fluid. My spinal fluid is negative for BB and this point, and PCR looks for proteins present in the actual bacteria.

Again it is a huge bacteria, a real monster, and there is a ton that is not known about it....

I wish I had not gotten Lyme Disease, but, not much is made of it here in terms of my neuropathy.

Cyclelops:

Get a load of this. I just went back to all of Alan's tests and I have the Lyme Test in Front of me. That day they took blood, and what is in front of me is 5 pages. At the top right of ALL THE PAGES, it says PARTIAL.

So I went to the last page and it said"

PRELIMINARY REPORT.

This test is delayed because reagents are unavailable from the manufacturer. Results are expected by 12-28-06. This test was developed and its performance characteristics determined by Quest Diagnostics. blah blah blah.

So I said to myself. "okay, this is a partial result. I want PAGE 6.

I got on the net, got the phone number of Quest Diagnostics in San Juan Capistrano, CA. and spoke to the Lab Results guy.

I gave him the specimen number on the top of the page. He pulled up Alan's test results and I asked him "how many pages do you have?" and he said "oh I have 6 pages". I asked him "what does page 6 say, because I only have 5 pages and I need to know what it says on Page 6, if it says "yes, this guy definitely has the Lyme Antibodies, or it might say: " In our humble Quest opinion, this guy does not have Lyme,"

Want to know what he just told me???

'I'M NOT ALLOWED TO GIVE YOU ANY TEST RESULTS OVER THE PHONE"

So I said "listen to me, my husband has had neuropathy, arthritis and lord knows what else for 18 years, I never got page 6 of this test results, please at least tell me what the last thing on page 6 says'.

He said "what I will do is fax it to your doctor's office right now". So he did."

The doctor is not there right now. Won't be there until Wednesday.

I again said "You really mean, you can't tell me ANYTHING, anything at all what it says on Page 6, which is what it's my husband's right to know what this test says??"

He said "it's a violation of law for me to tell you anything over the phone".

He wanted to page the doctor and everything. I said 'if you think I'm going to bother the doctor on News Years for a year old test, (that I should have been given the final results on anyway), well, I won't do this. There is no reason to do this and it will only annoy the doctor. I know this.

So on Wednesday, I'll take a short bus ride (or Alan will), and we'll see what Page 6 says.

But after reading what you said, am I to understand that even if Alan was exposed to Lyme and had the antibodies, that it's too late for him to receive antibiotic therapy? Is this what you are saying?? So it actually might be found out that Alan had Lyme all this time, it did the damage, and there is nothing they can do about it? I mean, he was getting IVIG, (we won't know about approval for this year yet).

The whole thing confuses the heck out of me. I was under the impression that if by some magic, page 6 says 'AHA, THIS GUY HAS LYME, HE SHOULD BE ON ANTIBOTIC THERAPY, well, I guess that's not the way the cookie crumbles, is it??

thanks.

Melody

I wish that I could find a good one to compare with,but I could give you all a good run for your money on the bad one,s.This is going to be my year things are going to happen.~~~~~~~Liz M

One was the director of the emg/ncs lab at a major nyc teaching hospital. He performed a lengthy series of emg & nerve conduction studies, blood tests, the usual walking on heels/toes, etc. Came up with no definitive dx. Prescribed Ultram & sent me on my way. I go back about 6 weeks later with more questions & to try to coax a dx out of him. His response: “Well, since your sx are worsening, we need to repeat all emg & ncs.” No surprise that his instant response was to repeat tests which are the sole focus of his lab & its financial wellbeing. Not listening to the reasons why I returned. Hearing what he wanted to hear. I hadn’t claimed my sx were worse…I just wanted more info.

Another at a different teaching hospital had the “fellow” interact with me. His only role was to fly in at the end of the visit and have me repeat all the info I had already given to the fellow. Much too Godlike for my taste. No continuity of care (the fellows stay only one year). Treated like a lab rat; not as a human being.

To date (8 years) have not found a “good” neuro. About a year ago the chief of neuro (famous cancer center) said I have fibromyalgia. My rheumy totally disagrees. Says I have Polymyalgia Rheumatica and that I’ve had it for 8 years!! Because I am pre-diabetic, I have to carefully monitor prednisone intake (it raises blood glucose) but I take nothing at all because I have no one to oversee this regimen. I have an app’t in Feb w/ a new endocrinologist from whom I expect very little but fervently hope he may have some answers for me.

I know I was tested for Lyme in the past but it may be time to re-test. No doc has ever suggested that Lyme may be a PN factor in my case.

Megan: Thanks for the Neuropathy Trust site.

Summary of whom to avoid:
MDs with serious God complexes (arrogant, interrupting, dismissive of symptoms/feelings)
Unnecessarily repeating tests, especially for the sake of financial gain.
Pill pushing.
Narrow focus, uncreative, cannot think “outside the box.”
Worst of all: no thorough knowledge of PN

Hi Mel...

Having antibodies to Borrellia Burgdorferi is like having antibodies to Chicken Pox, or measles or flu.

It could mean he COULD have an active case.

It could mean he had it long ago, and still has antibodies.

That is the basis upon which we base all immunizations....growing antibodies to a given disesase....this is why we need tetanus shots every 10 years....our body seems to make antibodies for about 10 years then we don't have enough...so we need a shot...

Lyme antibodies can mean an active infection, and they need to look at Alan and do more tests....or it can mean he had Lyme at one time, is over it and now has antibodies to it. PN and GBS are linked to Lyme.

There is incredible controversy regarding Lyme and I wish that when I had it, in 1994, I had insisted on IV. There are downsides to IV treatment, one being gallstones and other issues as well. It is possible that the new oral antibiotics are better than back then...I am not going out on a limb here...I really do not know.

It is conceivable that if you live in NY and have been in any natural areas, you sure could get Lyme. We have it pretty bad here in WI too.

They likely will do some PCR testing....just to make sure...they probably already have done it. I would think that it would show in a lumbar puncture as well.

Now, you have the issue as to when Alan was exposed...is it recent, is it active? That is what the docs need to sort out.

Lyme is a huge mess...I believe diagnosed inappropriately in a lot of people, and missed in just as many. I wish I could give you more direction on it...but doctors have lost licenses for treating it, some should have, others should not have. Most docs won't touch it with a ten foot pole unless you have definitive proof you have it.

The lab is obeying HIPPA regulations...they have no choice. They can't give you results...what if you were not who you say you were. They would get sued. Wednesday is fine, unless Alan has severe symptoms, such as fever or Bell's Palsy or change in consciousness.....then call the doc, it is a medical emergency. If he doesn't feel much different, Wednesday will be fine. Lord, I have lived with the specter of the disease for 14 years, and yes, it creeps me out to think it could be lurking, then on the other hand...it might be gone same as the measles.

Lyme does cause a great deal of havoc with the immune system and I have to laugh after two series of Hep B shots I never seroconverted. I am the seronegative queen!

Oh....one more thing....no doc will ever tell you your PN is due to Lyme.

It is in my history that I had it...but I do not talk much about it to docs, as they will visibly squirm in their chairs, and you may end up losing a doc you like....as I said...unless they find an active case, there is likely nothing much they will do.

The most definitive test is spinal fluid PCR, and I had that and it is negative now....which in the world of mainstream medicine means, I do not have any evidence of the bacteria in my spinal fluid...therefore, I do not have the disease.

If you get into reading Lyme literature, you will read the bacteria has about 30 different states it lives in...several plasmid forms and a cystic or I think better stated as a spore like form.

I have had credible people tell me that there is a lot they do not know about BB. My current doc, shakes his head and says, "We really do not know"...and likely antibiotics won't help much and would likely mess up my intestines more...(which I do not need.)

I admit there are stories of people, who have just about died FROM the antibiotics and I think...no wonder you feel better now! After all the years on antibiotics you would have to feel better being off of them. If you are on antibiotics for two years, you forget what it is like to feel normal. I do not know how people survive that many years on it...I know what a month of it does and it ain't pretty.

Speaking of...not to highjack this thread...but some comments came up regarding Erythromycin for gastroparesis...the dose I take is no where near what you get for an infection....it is a tiny amount, and in me it works as a gastric stimulant. It won't work for every one. I use it as I can't use antidopaminergics such as metoclopromide (reglan) or other ones. Some people with certain kinds of arrhythmias can not take erythromycin (those with prolonged QT syndromes). The dose for gastroparesis is very small and shouldn't interfere much with absorption of nutrients.

Oh my god. Alan is standing here right next to me and going {holy (you know what). Because obviously, they can't do anything after 15 years.

And that's how long Alan has the PN...15 years. He got a fever when he was 33 or 34 years old. No doctor knew what it was from. They put him in the hospital for 10 days in isolation and ultimately he was diagnosed as having a Fever of Unknown Origin".

Now if this was a reaction to a tick bite (and how could we ever know if this is the case?) We can't, obviously.

So on Wednesday, we'll call up Dr. Fred and see what Page 6 says.

I do believe it is too late for the antibiotic therapy.

Or does anyone out there who is more knowledgable than I am.... if they run another Lyme Blood Test and it comes out (more positive Bands), I mean, what do you think a doctor will do????

Probably nothing because it's 15 years already.

Why on earth didn't anyone think to test him 15 years ago???

God, the incompetency of the medical system is absolutely astounding.

thanks for listening. and Cycle. thanks much to you.

Melody

I do hope others will share their experiences and maybe, somehow we can bring this to the attention of all neuros who need more 'sensitizing'?
My very first neuro was 'benign' at best, He had done the basic MINIMAL blood, urine tests, MRI [no spine] and declared that I had to 'live with it' despite my expressed concerns that this old 'plain' neuropathy was marching towards my torso at an alarming [to me at least] rate....
After six months...I realized that I knew NOTHING about what a neuro is, does or should do. I was not internet conversant, but I'd gotten the PN handbook [now a dated classic, I think] and proceeded to learn the internet...tho sitting and typing were BIIIGG issues I took a couple quick and fast 'net courses...and then found the 'old' board..I simply sat and read all that others before me has suffered and I knew I'd found a place that UNDERSTOOD!
I then realized, not netwise, to use my medical plans' approved 'preferred' docs lists...I started calling. [after 2 other docs I see regularly for other stuff, went HUH? to Neuro #1's attitude] I found a neuro for a second opinion, who listened, especially about my fears on the progressions and how the current med I was on was destroying any life I had....Then rite off the start, new script, and the battery of MRIs Blood works and nerve conduction tests I should have had to begin with! As much as I appreciated this neuro, the progression was well, progressing..so, On to another opinion! I got by luck the head of the neuro dept at a leading area teaching hospital...He ordered all the autoimmune blood work and some other MRIs etc to rule out even other things...Spinal ensued at my current neuro's office and even more blood work ...three weeks later diagnosis and on to setting up IVIG! Soo, the second and third opinions were my charms. It was only after I'd been diagnosed that I'd gotten computer literate enuf to find sites such as this...I go to my neuro appointment, I get there early [I try to be well-trained] I expect to wait, and I KNOW that I am 90% of the visits going to get quality time with the doc. I have had to see 3 other neuros for other issues since and One I love, the second I'd tolerate, the third I'd stay away from as he approached me with all of those 'pre-conceived' biases rite off.

The BEST way to approach a new doc after seeing another has been in my experience: We don't seem to communicate well. Surprising how the new doc will 'nod' and just go on. W/my current neuro, cannot tell you how many other of his current patients are former's of that first one! When one has to 'wait' extra time in a room, folks get talking!

As for the Lyme's and neuropathies? Maybe the Mods could and really should pull parts of our posts out an make it a new thread. WHY? IT Mimics lots of PN issues, and vice-versa....It deserves a discussion on it's own. I respect Lymes' I know many who have it...or mite have it...in our area more folks have it than are truly diagnosed. Gee! I've been even tested for West Nile! Neg of course, but one can never tell.

Onward, please folks...Put it out HERE! Some doc's gonna read it! They need to know how we feel about THEM! They aren't only docs, they run businesses and have staff working for them who depend on them! It's a multi-road intersection - and we are the key traffic! Hugs to all! - j