Lime Disease or ALS

In February I was diagnosed with Carpal Tunnel, in May my calf muscle, both legs started twitching I saw two neurologist at two different hospitals both diagnosed me with ALS.  Last month I saw a chiropractor who pricked my finger put the blood under a microscope and showed me spirochetes.  The spirochetes were in a cyst stage.  After this I found a lime specialist, who ran a few test and diagnosed me with neuro lime.   I have started antibiotics.  My symptoms are weakness, I can barely walk, my thumbs are worthless and my diaphragm is weak, when lying down I use a by pap machine. 

I guess I am looking for someone who has had the same experience.  No one will say if we kill the lime will the ALS symptoms go way.

I am seeing Dr C. in Missouri and he has prescribed a progression of antibiotics that started with doxicycline (sp?) then progresses to ceftin next and then a couple of others and then I think after that is flagyl. I am also taking some alternative medicines which include coiloidal silver and some others. My symptoms started out like carpal tunnel in my hands and then after the twitching started they did their shock tests which is what they used to diagnose ALS.  Thanks for your post.  It helps to hear similar stories.

Post Edited (Blueboy) : 12/5/2009 8:59:06 PM (GMT-7)

Thanks. I will read what you have suggested. I have heard about herxheimer, but have never been able to understand how you know if you are herxing or just getting worse. The only thing I have been told is if I feel bad, stop taking all my medication and if I get better then I was herxing. Also, I wondered if I should be exercising my muscles to help keep them from deteriorating faster and if I should be exercising, what kind should I do. My alternative doctor (not Dr. C, I haven't asked him) says I need to be doing weights. How long have you been taking antibiotics and do you feel like they are helping?

Hi blueboy

I'm so happy for you! Not that Lyme is a fun thing to have, but with proper treatment, you can recover from it. And you're in the hands of a very good doctor. I don't know anyone personally with similar symptoms, but one of the books on Lyme that I read (Cure Unknown by Pamel Weintraub) had a doctor in it who was diagnosed with ALS, got treatment, and was cured. He started treatment just when he was about to have to be in a wheel chair (in was in a wheel chair part time, but not full time). He went on to treat a bunch of other ALS patients. He found that if they got treatment when they were in a similar state to you (could still walk, or had just started being in a wheel chair), they would recover from all their ALS symptoms (I don't know if it was 100% of people, but it was most of them). Once you get past a certain state, there is the possibility of permanent damage, but it sounds to me like you've caught it early enough you can recover. And once the Lyme is gone, your ALS should stop progressing (actually, I think it should stop progressing even now- although it will be hard to tell, since herxheimer reactions can make you feel worse) BUT- I;m not sure if this is true for 100% of people...

The doctors name was Martz...I think it was David Martz, but Martz for sure.

Blueboy and everyone else here: I did not know that if we squeezed out a little blood and looked at it under a microscope that the spirochetes could be seen. If this is true, then it is proof positive that this disease is a chronic INFECTION and not a syndrome. Also seems to me that this would be the least expensive test as well as the most accurate. I did not know that the spirochetes could be viewed under a microscope without special lighting, etc.

If this can be done, then why are we not offered this simple test?

Lyme,

Good question. I wish I knew the answer.

Blueboy,

You are definitely on the right track. Keep being an advocate for your own health.

So, have you decided what protocol you will try yet? Alternative or antibiotics?

Hi all,

I was one of those who watched my own spirochetes also after a nurse took blood from my finger and performed dark-field microscopy.  I was fascinated!  After years of going from doctor to doctor who couldn't diagnose me, this nurse found the lyme bacteria and then my journey started from there including getting tested at IgeneX where I tested positive for both lyme and ehrlichiosis.

I don't believe in ALS, I have researched it, met people who were diagnosed with it, and in my opinion, it's always lyme.    I think when Lou Gehrig became sick, he really had lyme but doctor's didn't know what to call it so they came up with ALS.  

I would advise anyone who has been diagnosed with ALS to get tested at IgeneX:

 www.igeneX.com

What do you have to lose?

Denise

themerks,

Has his doctor tried any other IV meds? What about supplements or herbs with antibiotics? Are they doing anything to strenghthen his immune system?

pcpc, a member here, and also a doctor, posted about an IV med that worked wonders. I think it was clarithromycin if I'm not mistaken.

In the Documentary Under Our Skin there is a great part on a Dr Diagnosed with ALS who was treated for Lyme and recovered. Great movie you should buy it.

I am diagnosed with MS but the only thing that stops my flares is antibiotics. I have tested positive for Lyme 8 times and no Dr where I live will even consider it.

Be your own advacote.

anyone diagnosed with ALS -did you get head burning-burning in the brain? Nobody has answered me on this and so i'm trying to prepare myself for the worst- i know dr. J mentions in his book this sensation is ammonia on the brain- but don't we all have that? why am i feeling it and i can't find anyone else saying they can? this is just the second time- it doesn't last more than a few minutes or so- is this an ALS symptom or is this neuropathy or really bad ammonia or what?

I have similar issues as Blue Boy - & a million more. Also, one cannot see spirochetes in blood unless, I believe, it is a coinfection such as Babesiosys. Supposedly this will show up in red blood cells. I have been treated with anti-biotics for 3.5 years now, with some time off here & there. The antibiotics have changed - Lyme specialist mixes it up. I have Lyme and at least 2 coinfections.

Hi Nell,
Welcome to our community!!

I too would encourage you to read through our "New to Lyme? Start here" thread, as it's packed with helpful information that you might have not seen before.

Actually, the spirochetes can be seen in the blood with a special microscope known as dark field.

3.5 yrs in treatment is a long time!! I was infected for 40 yrs and healed in only 2 yrs (although that was quick by most standards) - I hope you have seen some improvements in that amount of time!

Please let us know if you have any questions or if there is anything that we might be of help with!!