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Dengel

New member
Joined
Sep 4, 2016
Messages
3
Reason
Loved one DX
Diagnosis
08/2016
Country
US
State
Nebraska
City
Omaha
Has anyone tried the holistic approach ? Further testing for Lyme disease, heavy metal testing ect? My husband was recently dx with ALS and from doing some research it seems like his symptoms are different. He seems to have more generalized weakness that didn't particularly start in any limbs. No drop foot or hand weakness. He is still golfing 2-3 days a week but can't hit the ball as far as he used to. His arsenic (sp) level is very high end of normal. Maybe I am in denial, but want to cover all of the basis. He has also been on Hydrocodone for years due to chronic back pain. ( I know, why not quit golfing?) that won't happen, but I also wonder if the long use of the pain meds could have anything to do with it. Any info would be helpful.
 
If you are interested in alternative treatment for ALS, there is a Facebook Group called ALS Naturally. They delve into many alternative therapies.

As for me, I believe in using every tool there is including alternative therapies.
 
Whatever you do please think critically and research thoroughly. Many people present their thoughts as proven fact. There are also people who prey on desperate people and I count those who say all ALS is Lyme among them. Is Lyme a possible mimic? Yes. Is that the case for most no. I can remember several PALS who followed that road going through expensive and uncomfortable treatment only to die. LLMDs say not caught in time. I don't believe it.

It sounds as if heavy metal testing was done by your doctor already? Please think hard about pursuing special tests uncovered by insurance

Was his diagnosis made by a neuromuscular specialist and confirmed by a second? Especially if his symptoms are atypical that would be first on my list
 
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Hi D,
Agree w/ Nikki, if there is role for chelation or other therapy to address heavy metal toxicity, "traditional medicine" is well-equipped. Did you ask if the arsenic level warrants that?

If Lyme testing was negative, pursuing more in the absence of tick exposure evidence is a one-way ticket for your money. But a 2nd opinion is mandatory anyway, at which time you should address your concerns.

You are right that generalized weakness is atypical in a disease that generally presents asymmetrically, if it did not start first on the right or left. However, without knowing more about the EMG and clinical picture, it is hard to say if other diseases should still be on the table.

I am sorry to hear about your husband's condition.

Best,
Laurie
 
Thank you for your replies. His Neurologist Here first dx him with alcoholic neuropathy but after his Emg sent him to Mayo clinic where the neurologist there said probable ALS. I just wish there was a test that could dx. It 100%.
 
Dengel, I'm sorry to hear your husband has been diagnosed with ALS.

Unfortunately, Mayo is unlikely to be wrong. But we always advise getting a second opinion.

When you do your own research, you might be somewhere between "double checking" and "denial." It's a very complex and rare disease. So unless you went to medical school and graduated, I don't think your own research is going to uncover anything that Mayo hasn't considered.
 
Heavy metal testing, vitamin levels, muscle enzymes, antibodies for inflammatory diseases, cat scans, mri, and emg were all done for my husband. This was in addition to clinical exam and history. Not eceryone needs all of this but some people do. I would ask uour doctor about the arsenic and other heavy metals. Red yeast rice and other forms of rice, are higher in natural arsenic.
 
The "high end of normal" is still "normal".

Don't lose sight of that fact.
 
Thank you for your replies. His Neurologist Here first dx him with alcoholic neuropathy but after his Emg sent him to Mayo clinic where the neurologist there said probable ALS. I just wish there was a test that could dx. It 100%.

Mayo is VERY conservative on their diagnosis. They usually say possible until they are sure. I would get a second opinion, though.

I agree with what everyone else warned about alternative treatments. I guess I just feel more comfortable because I was working on a doctorate in naturopathic health with an emphasis in nutrition before my diagnosis. Odd thing for a finance person to do but it just interested me and I had been diagnosed with Meniere's and didn't believe the diagnosis.

Anyway, this forum is a great place for research on just about everything. As for Vitamin and supplement regimens, ALSTDI has a lot of good info.

If you go to Dr. Bedlack's site ALS Untangled, you will see ratings on many of the alternative therapies out there.

Unfortunately, much research is necessary in so many areas with this disease. The folks here have been a tremendous help to me in so many areas. I'm not sure what PALS and CALS did before the Internet.
 
You are right Greg. High normal is normal. Sometimes though "normal" can be an issue for people. For instance a fasting glucose of 70 may sou d good but may causes hypoglycemia symptoms. I think asking about it is okay. I wouldnt accept treatment unless I had the symptoms.
 
When you mentioned generalized weakness the first question that came to mind was whether he was on statins. My husband had generalized weakness that rapidly progressed over a 6 plus month timeframe and was finally diagnosed with respiritory failure with suspicion of ALS. He had been on statins for 20 years and his cardiologist doubled his statins in January 2013 and shortly thereafter the decline began, he was trached and ventilated in September 2013. Pfizer's safety label warns against muscle pain OR weakness. I have no idea if this may have been the catalyst for his onset of ALS or not but I spoke to researcher Dr. Beatrice Golumb, MD, PHD who has done a substantial amount of research on statins and she has found evidence of statins causing an ALS like syndrome. Just wanted to share this anecdotal information.
 
Thanks all for the info. Mayo was his second opinion. He has been on statins for years. I think I very badly want it to be something else but I also don't want to miss anything.
 
Agreeing with Kim, Mayo is very conservative in diagnosis. A personal friend's husband was not diagnosed at Mayo after extensive tests they wanted to "wait and see", but in a second opinion at the University of Minnesota he was diagnosed at the beginning of his first appointment. We actually avoided Mayo for our second opinion because we wanted to avoid going through more useless tests when the answer was pretty clear.

There is a TON of snake oil for sale in ALS. If your husband does not have ALS after all, that will become more clear over time. If he does, that will become more clear over time. I would say don't chase snake oils, enjoy what you have now.
 
Maybe my symptoms were more clearcut, but Mayo gave me a diagnosis of "probable ALS" after an EMG and the usual tests to eliminate other possibilities. I had been referred by a local neurologist who suspected ALS after an exam, but did no further testing. To meet VA requirements for a definite diagnosis the neurologist later clarified the "probable" with a statement that for all practical purposes the diagnosis was "ALS" (I didn't meet all the El Escorial criteria for definitive), As I said, maybe my presentation was conclusive in combo with the tests, though my symptoms were relatively mild at the time. So based on my single experience I'm somewhat surprised to hear that they are considered conservative.

Ed
 
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