Lime Disease or ALS

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Blueboy
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Date Joined Dec 2009
Total Posts : 4
   Posted 12/5/2009 9:08 PM (GMT -6)   

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.


CajunGrl
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Date Joined Mar 2009
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   Posted 12/5/2009 9:17 PM (GMT -6)   
Hi Blueboy,

Welcome to the forum! I'm so sorry you are dealing with ALS symptoms. It is a fact that Lyme Disease can mimic ALS. Many people think that ALS is actually Lyme Disease.

If your doctor saw spirochettes, it is very likely that Lyme Disease is causing all of this. I am not a doctor though so I cannot say for sure but there is research out there on this. Do a search on ALS and Lyme Disease.

What other symptoms did you have besides the twitching that made your doctor think ALS? I have Lyme Disease and I have twitching all over and some days I cannot walk.

Btw, I too have neuro Lyme. Did your doctor prescribe a cyst buster like flagyl? What other antibiotics are you taking?
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


Blueboy
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Date Joined Dec 2009
Total Posts : 4
   Posted 12/5/2009 9:30 PM (GMT -6)   
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)


CajunGrl
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   Posted 12/5/2009 9:44 PM (GMT -6)   
Dr. C. In Missouri is a good doctor. You should be in good hands.

Do you know about the herxheimer reaction? Antibiotics can cause this as well as colloidal silver. When you start taking these medications, your symptoms will get worse before getting better. It is the die off of bacteria that causes this. You will want to read our sticky thread at the top of the Lyme Forum titled, "New To Lyme?....Start Here!". It will explain how to detox to get the toxins out of your body when the bacteria die off.

Here's another great site to read:

www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


Blueboy
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Date Joined Dec 2009
Total Posts : 4
   Posted 12/5/2009 10:05 PM (GMT -6)   
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?

CajunGrl
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Date Joined Mar 2009
Total Posts : 4717
   Posted 12/5/2009 10:18 PM (GMT -6)   
Dr. Burrascano's guidelines say you can exercise but not to do areobic exercises. I'm sure weights are fine. Ask your doctor first though.

I was recently on antibiotics to treat Bartonella but had to get off because my liver enzymes were high. Now, I'm in the process of doing a liver cleanse and supplements to boost my immune system until I can get everything straightened out.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


Nicky D
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Date Joined Jun 2009
Total Posts : 361
   Posted 12/5/2009 10:46 PM (GMT -6)   
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.

Nicky D
Regular Member


Date Joined Jun 2009
Total Posts : 361
   Posted 12/5/2009 10:51 PM (GMT -6)   
and just so you know- I have carpal tunnel (although I've had it for a year and a half), and in April/May I started getting a ton of muscle twitches as well. When I went to my Dr, he said that all my symptoms combined pointed to either ALS or were all in my head. Because I'm in an age range where it's very rare to get ALS, he wrote me off as crazy- and I knew I had to look for a different cause. Also- I didn't get muscle weakness until after I started treatment for Lyme (another reason why I and my doctor didn't think it was ALS). The first month I treated for Lyme I got terrible muscle weakness, which has since improved some, but I am still not back to where I was.

Anyway, I'm a bit luckier than you symptom-wise, since mine don't seem to be as severe as yours, but I was thinking it might help to know that other people with Lyme do have similar symptoms. The first doctor I saw had a patient diagnosed with ALS who was in a wheel chair. They had stopped the progression of ALS, and my doctor was hoping to get her out of the wheel chair and walking.

+Lyme
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Date Joined Apr 2009
Total Posts : 1304
   Posted 12/5/2009 11:15 PM (GMT -6)   
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?
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.


Nicky D
Regular Member


Date Joined Jun 2009
Total Posts : 361
   Posted 12/5/2009 11:53 PM (GMT -6)   
+ Lyme- I'm not totally sold on the blood thing. However, since blueboy is also seeing a respected LLMD, I decided he/she probably had a good second opinion confirming lyme. Of course, it's possible the chiropractor got incredibly lucky, but I'm pretty sure it's really difficult to find lyme in blood, since it doesn't like to live there?

CajunGrl
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Date Joined Mar 2009
Total Posts : 4717
   Posted 12/5/2009 11:57 PM (GMT -6)   
Lyme,

Good question. I wish I knew the answer.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


Blueboy
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Date Joined Dec 2009
Total Posts : 4
   Posted 12/6/2009 9:55 AM (GMT -6)   
This chiropractor and alternative medicine doctor has treated alot of people with lyme and other chronic diseases. He is in the Joplin, MO area and he has invented a special microscope that he uses to diagnose his patients with lyme. He showed us the picture and the lyme disease in the cyst form in my blood. Of course we did not know for sure what we were looking at. He did say he cannot tell the difference in the different kinds of spirochetes. He only treats with supplements. My wife spoke to a lady in his office one day that was diagnosed with MS which turned out to be lyme and he has treated her and she is better. We thought it would be better, though to also see an LLMD.

CajunGrl
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Date Joined Mar 2009
Total Posts : 4717
   Posted 12/6/2009 9:19 PM (GMT -6)   
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?
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


themerks
Regular Member


Date Joined Jun 2008
Total Posts : 21
   Posted 12/15/2009 4:52 AM (GMT -6)   
I have not been on this site for sometime now as I am the caregiver for my husband. Dxd with ALS and Lyme. I am leaving for work but would like to give you the information I have. Also would like the name of the doctor who tested your blood under the microscope. I am very interested in hearing more about it. My husband has been ill for 2-1/2 years now with ALS symptoms. We are still fighting but are at a standstill. My e-mail address is edbevmerk@gmail.com

Thanks, Bev

Deejavu
Veteran Member


Date Joined Aug 2005
Total Posts : 4296
   Posted 12/15/2009 6:16 AM (GMT -6)   
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:
 
 
What do you have to lose?
 
Denise
It's all about the Immune System mixed with a large dose of Positive Thinking and Daily Detoxing   ~  Pay It Forward!!
 
This song is about my years with chronic lyme since 1995 and being in remission for over 3 years:
 
 


themerks
Regular Member


Date Joined Jun 2008
Total Posts : 21
   Posted 12/15/2009 10:21 AM (GMT -6)   
I agree about the ALS being Lyme and so does our LLMD. If anyone can give the name of their doctor that was able to look at their blood in the microscope I would appreciate it. U have had several years to research Lyme and the ALS connection and I am convinced they are the same. However our LLMD has never mentioned looking at his blood. His Igenex testing was borderline. He has been treated for over two years now and had some improvement on IV Rocephin but had to be taken off because his body was rejecting it and he started having seizures. All orals now and has been backsliding. He is bedridden now with feeding tube. Can someone help with some info?
Thanks, Bev

CajunGrl
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Date Joined Mar 2009
Total Posts : 4717
   Posted 12/15/2009 4:19 PM (GMT -6)   
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.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


CajunGrl
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Date Joined Mar 2009
Total Posts : 4717
   Posted 12/15/2009 4:29 PM (GMT -6)   
themerks,

It may be Clindomycin. Here is her profile link. Send her an email. I'm sure she may be able to tell you what helped her.

www.healingwell.com/community/profile.aspx?f=30&m=1638595&p=77821
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum

Post Edited (CajunGrl) : 12/15/2009 3:38:11 PM (GMT-7)


Really Lyme
Regular Member


Date Joined Jan 2007
Total Posts : 219
   Posted 12/15/2009 9:17 PM (GMT -6)   
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.
Finding Peace In This Crazy World !
 
Beth
 
FIRST POSITIVE LYME TEST IN NOVEMBER OF 2004
DX- WITH MS  APRIL OF 2005
DX- WITH LYME JULY OF 2006
FINALLY TREATED FOR LYME JANUARY 2007


Deejavu
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Date Joined Aug 2005
Total Posts : 4296
   Posted 12/16/2009 6:53 AM (GMT -6)   
Hi Bev (themerks),
 
Really sorry to hear about your husband.   I don't know how many doctors really know about "Dark Field Microscopy" and even if they do, I think it's all about timing as to whether or not the lyme spirochetes will show up or not.  I just happened to be lucky.  
 
You may want to read some alternative medicine books since your husband is rejecting the antibiotics, you have nothing to lose...
 
I recommend 2 books:
 
Healing Lyme by Stephen Buhner and;
 
Beating Lyme Disease using Alternative Medicine by Dr. David Jernigan (that is the protocol that I followed and it worked for me).
 
Hope that helps,
Denise
It's all about the Immune System mixed with a large dose of Positive Thinking and Daily Detoxing   ~  Pay It Forward!!
 
This song is about my years with chronic lyme since 1995 and being in remission for over 3 years:
 
 


blessings723
Regular Member


Date Joined Oct 2009
Total Posts : 289
   Posted 12/19/2009 9:28 PM (GMT -6)   
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 refuse to stay sick! Period. 
 
 


Cat53
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Date Joined Jul 2012
Total Posts : 672
   Posted 8/25/2012 7:00 PM (GMT -6)   
My husband was recently diagnosed with ALS. I have been researching and reading a lot of posts regarding the connection with Lyme, and we are probably going to try the testing with IGeneX (spelling?) lab. I don't trust that the doctors, including a well-respected neurologist, will do much for him. His symptoms are muscle atrophy/fascillations (spelling?) mostly in his right arm, weight loss, and loss of right thumb use with a disfigured finger. He feels fine otherwise. If anyone has any recommendations, please let me know. Thanks. I appreciate any input.

Nell
New Member


Date Joined Sep 2015
Total Posts : 3
   Posted 9/11/2015 8:23 PM (GMT -6)   
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.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 26312
   Posted 9/11/2015 8:31 PM (GMT -6)   
Hi Nell, welcome to our community!

Have you had some improvement in the time you've been treating?

Although you are not new to lyme, you are new to this forum, so when you have time, you might want to read the "New to Lyme?...Start Here!" thread at the top of the page. It's full of good information - symptom lists, info on probiotics, detoxing ideas, and much more.

I hope you keep reading, posting, and feel free to ask any questions you have. This is a supportive and knowledgeable group of people here...
Moderator, Lyme Forum
Symptoms started April/13; Buhner's protocol May 15/14 to July24/14
Igenex pos. July 3/14 Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14
Amox 1000mg x3 + Probencid Aug. 29/14; added biaxin 500X2 Sept. 26/14
Disc. amox and added Ceftin Nov. 20th. Jan/15 pulsing Tindamax ; disc biaxin
Buhners bart herbs added Dec/14; ABX/Buhner herb break Apr/2015

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35853
   Posted 9/12/2015 2:28 PM (GMT -6)   
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!!
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New Lyme case 8/2014 - Healed 1/31/15
*I can usually post a link to any info that I post. Wish to see a link? Please just ask!
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