ALS vs. Lyme's

[MDsha]

New to this forum and not sure where to post. Diagnosed with ALS back in July 2016 at Hopkins through EMG testing. I am experiencing muscle wasting in my hands and fasciculations. I have many Lyme's symptoms as well such as ringing in the ear, dental issues, burning in hand and feet, night sweats, neck pain, and headaches. I have been taking Rilozole since July but Lyme literate doctor put me on azithromycin 600mg and plaquenil. He feared minocycline might worsen my ALS condition. The antibiotic and plaquenil have made me feel awful but pushing though. My main question is should I proceed with IV antibiotic treatments which are scheduled to start soon or will they further my progression and make me feel worse? I feel like it is a crap shoot. Having not tested positive for Lyme's I have no evidence although Lyme doctor says I have "hints" of it. Do I have ALS or do I have Lyme's?

 

[GregK]

What are the credentials of the doctor who hints at it?
Did you get a second opinion?

 

[lgelb]

There is no "hint" of a bacterial illness. You have it or you don't.

On the other hand, if Hopkins says you have ALS, you probably do. The rx you are on are inappropriate for an unverified infection and heavy-duty stuff that could reduce your appetite, create other issues and make you more vulnerable to actual infections down the road. And the Lyme journey is likely distracting you from living your life with ALS, which has enough challenges.

Agreed that you should seek a 2nd opinion at another ALS center, as we advise everyone. That would also be a place to lay out what you think you are taking the drugs for and get other ideas.

Best,
Laurie

 

[vw-fl]

I agree with what Laurie said.

If Hopkins says you have ALS, you most likely do (That's where my husband was diagnosed by Dr. Rothstein in 1997). For a second opinion I would recommend George Washington University ALS Center (my husband got his second opinion from Dr. Kelly).

Hope this helps.

vw-fl

 

[Joanne60]

New to this forum and not sure where to post. Diagnosed with ALS back in July 2016 at Hopkins through EMG testing. I am experiencing muscle wasting in my hands and fasciculations. I have many Lyme's symptoms as well such as ringing in the ear, dental issues, burning in hand and feet, night sweats, neck pain, and headaches. I have been taking Rilozole since July but Lyme literate doctor put me on azithromycin 600mg and plaquenil. He feared minocycline might worsen my ALS condition. The antibiotic and plaquenil have made me feel awful but pushing though. My main question is should I proceed with IV antibiotic treatments which are scheduled to start soon or will they further my progression and make me feel worse? I feel like it is a crap shoot. Having not tested positive for Lyme's I have no evidence although Lyme doctor says I have "hints" of it. Do I have ALS or do I have Lyme's?

You need to discuss this further on a Lyme forum. You will find that Lyme rarely tests positive although interestingly in the Halperin study a higher than usual number of ALS patients did test positive. There are in fact many species of Borrelia (Lyme) and hundreds of strains and tests only look for one strain of one species. There are no tests available for many other species found in US and elsewhere in the world that are known to cause human health problems.
There is NO cure for ALS it is a projectory to death, anyone that has a suspicion that it is caused by Borrelia needs to do their own research and grasp any help they can get to fight this monster.
There are no guarantees with treatment if it is ALS/Lyme - Dr Martz said at a conference I went to in 2010 that care in treatment was important low and slow to avoid Jarish Herxheimer reaction causing permanent damage. There are a number of Lyme doctors experienced in dealing with this and several Doctors who have been treated with success. However in Martz own studies yet to be published response to treatment was varied not all recovered some stabilized as in the case of a friend of mine in Norway stabilized for over 12 years. Martz said those in the late stages of illness were not helped by treatment.
I am aware of ALS untangled response to this subject but their main reference is the Halperin research a close look at that shows that they relied on the poor antibody tests available and the only treatment was a very short course of one antibiotic. Lyme doctors have far more success with tri therapy antibiotics for a longer period of time. That study needs to be done in an honest way using laboratory techniques for diagnosis far more specific and sensitive such as proteonics they then need to test for other pathogens which are often involved in those sick following tick bites Babesia treatment was one of the treatments Dr Martz used, Bartonella is another common co infection but there are others. Treatment needs to be directed by doctors experienced in treating this. Borrelia is now recognised as being a persistent infection in animals, humans and in vitro.
Good luck in fighting your ALS a useful resource would be Lyme Disease dot org

 

[lgelb]

I have had lab-confirmed Lyme and my husband had ALS. There really is no resemblance, and the couple of cases published as "mimics" should have been spotted in the diagnostic process. All due respect, Joanne, what you suggest is a journey at considerable cost in pain, money, time and energy that would be better spent dealing with ALS and generally living life, assuming, MD, that a second ALS center confirms your diagnosis.

My own Lyme case was somewhat unusual and as a health services researcher, I spent considerable time researching whether the LLMD contingent had anything to offer me, as I already took care of my husband due to his pre-ALS genetic disorder. The opposite was true. Since you have a diagnosis in hand from a reputable institution, MD, as opposed to a "hint" from an economically-interested party, please, follow that out first, for your own and your family's sake. You only have so much life left, but only you can determine how you live it.

Best,
Laurie

 

[affected]

Joanne who are you?
Several years back you were here talking on about lyme, but I don't think you have ALS or a family member with ALS?