Lyme Update
 

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.

Flagyl
 

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!!:eek:

update/flagyl/lyme
 

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.

Good to hear from you about tall this--
 

--and I'm glad that the doctor working with you has enough sense to try neuroprotective supplementation prior to any heavy antibiotic regimen. (Finally someone who doesn't think nutrition is irrelevant.)

discouraging update
 

After becoming a new person around April, 2009, I remained this new person, adding strengths and losing symptoms until this February. By January, for instance, I was able to walk 4 miles, was making great progress weight-training, and was almost symptom-free of neuropathy. I say almost, because not all nerves normalized as I'd like, and there were still GI issues. But basically, my feet and hands felt normal, my tongue--which had plagued me--and my balance was quite normal.

Then I started getting tired at night, earlier, and with more of a melt-down sort of feeling. This has gradually worsened, and I am now in a melt-down sort of state way too much. My doctor has stopped antibiotics for a month's vacation from them, and put me on diflucan for a month, for any yeast which have overgrown. So during this month off, I'm just relying on my supplements and old support strategies to get by. It's quite disheartening. It seems there's no real data on how to proceed with such long-term lyme, so a vacation from drugs is just as good as switching at this point, minus the toxicty. There is nothing used for chronic lyme which does not have some neurotoxic issues: Cipro, flagyl, and such. That's a problem. We were hoping that my nerves were going to be healed enough to be able to gingerly try one of these drugs, in the hopes of knocking out the cyst-form of lyme which lives inside the nerve cells.

Things are still not as bad as before treatment. My balance is okay, and my stamina is generally better. But it's not great. I'm quite tired, and, for instance, today, a gorgeous Saturday, I just went back to bed int he afternoon for a 3 hour nap, after 10 hours sleep last night. I'm not feeling up to going out very much, and hanging out in the house, "nesting", feels about right.

It's discouraging. My doctor tells me, as do others, that I was the most dramatic "cure" they'd seen, so this is not unexpected to them. Apparently, things are rocky on the road back from lyme.

I still highly recommend that anyone with the diagnosis of idiopathic lyme get their blood sent to Igenex. You can arrange it directly with the lab, without your own doctor wanting it, I believe. They are quite helpful. It's a great lab, and no way does everybody come back positive. That's just a lie. They're very accurate.

Oh, it's the co-infections with lyme that are the real problem. Seems a tick that is infected with lyme is BOUND to be infected with other illnesses. So I'm infected with ehrlichiosis and bartonella in addition to lyme. That makes it all harder.

LizaJane,
Its great to hear that things are going better for you.

woops
 

Stagger, I think you missed the point; they're not going so well just now. But they were, and I hope they will be again soon.