While I don't read or post that often anymore, I still maintain an interest in the group, and maintain the Lizajane.org lab sheets, which are getting about 15 downloads a day--not bad!

So here's the update. I've been on antibiotics since February for lyme. I began feelnig much better in April and since April I have felt more well than I have felt in a decade. It's quite a marvel.

First I was on doxycycline, but as the sun came out and I began to react we switched high dose Amoxicillin---1Gm three times a day. I continue to do well on this, and will be on it until September, when I will be started on pulsed dose Flagyl, to hit the cyst form of the bacteria.

I believe my neuropathy symptoms are improving slowly over time. I can't say for sure, but they are definitely not worse. I am able to walk longer distances, and when I stop, it is NEVER because my feet are hurting. There are occasions when I get diffuse small fiber symptoms--like a prickly itch all over my skin, but these seem to go away quickly.

I continue to urge people with idiopathic axonal or small fiber disease to get tested for lyme at one of the labs approved by ilads, the lyme advocacy group of doctors. I still urge people to NOT trust routine testing.

There is a new documentary out about the underdiagnosis of lyme. It's called Under Our Skin, and can be bought for a donation from its website. There's been some publicity on this on TV, and I can't recommend this movie highly enough.

3 1/2 months of feeling relatively well. That's more than I've had in the last 15 years.

Good luck to all....

I'm so happy that you are feeling better and I hope it contnues and even gets better. Thanks always for your help.

Hi LJ - good to hear anti-b's are helping!

Just heads up on the flagyl - as a neuro-toxin its pretty brutual to the PN!!!!!! Be careful!!

For any CMTer reading this, it is one medication that we should not take at all. It can worsen neuropathy.

First, I want to tell you all that my neuropathy has definitely continued to improve with continuing antibiotics for lyme. I am also just generally more "well". I've been able to get a cold, and it not become a sinus infection, and I'm able to walk much greater distances, up to 3 miles at a pretty good clip. The main limit on my walking is back pain, from a fusion in 2006 which never healed. Still, 3 miles makes me happy.

Also, for those of you who commented on Flagyl...this will not be an easy decision to make. I'm still on Amoxicillin, 1500 mg three times a day, zithromax, 600 mg/day, and Diflucan (I don't rememeber the dose). But final treatment of the lyme bug requires a drug which can kill a specific life stage of the bacteria, and flagyl is the one drug known to be able to do that. My doctor has increased my supplements--putting me back on lipoic acid. He wants maximum improvement of the neuropathy before trying Flagyl. If we do it, I think he will continue to monitor me closely, as he has been.

In terms of supplements: fish oil, acetyl-L-carnitine, N-A-C, Icaps antioxidants, turmeric, 5HTP, DHEA, R lipoic acid, Quercetin (CoQ10), occasional vit B12, Calcium and Vit D3. I do believe they all help my nerves to regenerate.

So again, everybody: if you're PN is undiagnosed, or you are thought to have some sort of antibody negative immune disease, please ask your doctor to have your blood sent to a lab specializing in tick-borne diseases. Igenex was the lab to make my diagnosis, after six negative tests.

Also, if it seems you may have lyme clinically, by history, and your blood tests are negative, you ought to stil try treatment. The reason is that the antibody tests become negative with time. I was lucky enough to be in an acute flare when tested, so my acute antibody levels were high; but the antibodies that go up in chronic disease were negative! This turned out to be because my body has stopped making those antibodies (IgG) altogether. I lost my antibody response to all vaccines, for instance. This happens to lymers.

The diagnosis is as much by history and exam as by lab.

Just thought a happy update was due, along with a reminder about this disease that is way under-diagnosed and causes such havoc.

You probably know more than I do but Flagyl is definitely not for a CMTer. It can and does do damage. I know of people that it has happened to. It has a significant risk for a CMTer. CMT peripheral neuropathy is different than other PN's. I found this site for other drugs for Lyme disease:

http://arthritis.webmd.com/tc/lyme-disease-medications

I know there are many other sites and this site is reputable.

LizaJane,

If I was scared before I read this I am now well past and beyond in yet another world.

In Nov my Ophtalmologist ordered blood work more then I knew I had in me and the one thing that stood out was a positive for Lyme, but he brushed it off as it was soooooooo low... later in Feb after leaving him ( another story) I had a never conduction study done and I past with flying colors> his reply was you should look into why you had antibodies for Lyme> So off I went and the next blood work came back clear of any antibodies.

I just got off the phone ealier today from my doctor at the Cleveland Clinic ( won't be going back there anytime soon) with the results of my QSART test which was normal. He suggested I return to the Clinic for Behavoir modifaction.. don't you just love B J Skinner.. I need to run not walk to my doctor!

I would like to ask about the cysts, I have multiple noduals or fatty tissue lumps or what ever on my left arm when I have ask any doctor they all seem to brush them off trying first to get to the root of the issue?
They now (new this week) are pushing down and compressing onto nerves and my pinky down the palm of my hand and up my thumb are numb (numbness is nothing new but being caused by them is).

Sue Bee

There is a very good Lyme support site which can refer you to an LLMD near where you live. From there your treatment should improve. If you've had a positive Lyme test from a regular lab, it is really imperative that you get into the hands of a good lyme doc, as there are so many co-infections that the same tick carries that must be looked for.

I think if you find a good lyme doc, you will be on a better road. There is a road to healing with Lyme.

http://www.lymenet.org/SupportGroups/

If you ask about how to find a doctor you will be directed to the correct links. ILADS i think also links to doctors who belong.

Good luck, it's less scarey to have a known than an unknown.

I believe when the word 'cyst' is used in relation to Borrelia it is referring to a part of the life cycle and the cyst is a microscopic organism, which encases itself as to be immune to most antibiotics. There are several forms of the organism, spirochete, cyst, plasmids.

The lyme bug can curl up into a cyst form, with a waxy type of coating, which lives in nerve cells. It doesn't do much damage there, but it sits there and waits for the right situation to come out and multiple and do its thing. Substances like steroids send it into hiding in cyst form. Flagyl is one of the few medications good against this form, but there are others. They all have some difficulties in dealing with, and that's why some doctors feel that the disease is never totally licked, because you never get all the cysts. I believe my doctors think I will always have some cysts, and what we know that's helpful, is that the bugs die off with amoxicillin when they come out, so that if they come out again, we can give them a good hit!