Functional Medicine?

[jgerber123]

Does anyone have any experience seeing a Functional Medicine doc to help deal with holistic and nutritional issues? I'm thinking about seeing one but they are expensive. Curious to know if excellent nutrition might slow down progress of the disease.

John

 

[Atsugi]

No evidence for excellent nutrition making any positive difference in longevity.

I normally tell any PALS or CALS to pursue whatever makes them happy, but I draw the line at "alternative" medicine and pseudoscience. If your Functional Medicine doctor is an actual traditional medical doctor with experience in treating ALS patients--plus has privileges at the local hospital--then it probably wouldn't hurt to consult with him.

My first question for a FM doc would ask him to explain if and how homeopathic remedies work. The correct answer should be "I don't do that crap."

Do your research. Leave your checkbook at home.

 

[affected]

Nutrition can certainly have an impact on the speed of progression but maybe not the way you are thinking. We discuss this quite often if you care to search here.

The main thing is to supply a diet really high in calories. How you get those calories is where there is a lot of variation of choice depending on the dietary preferences of the PALS.

But preventing weight loss is the big key.

Many of our PALS also use a variety of supplements and you can also search here and see lots of discussions on those.

That could be a good starting point for you to get some idea of what you might look into.

 

[Firefighter58]

Hello there jgerber123, I knew a fellow with ALS and he decided to follow a homeopathic doctor, he soon died. His wife sees me and still regrets their decision.
Al

 

[jgerber123]

I agree with your thoughts on homeopathy but that is quite different than Functional Medicine docs who are "regular" docs with additional training in nutrition.

Anyone with experience?

 

[lgelb]

There is no generalizing about how good a functional medicine doc is, any more than any other subspecialty. I think our caution is, don't approach nutrition as a cure or treatment, nor any one nutrient or cocktail as something to mega-dose, but rather as a tool for overall health and wellbeing -- the "function" in "functional." And I wouldn't pay such a doc a penny more than a regular doc; if you really need a dietary consult, see a dietician. But the overall evidence in ALS, e.g. for antioxidants via food, maintaining weight, etc. is at least a starting point.

And as Mike points out, the training of an ND is very different from a medical doctor (MD) or osteopathic doctor (DO).

 

[KW1234]

I started seeing a functional medicine doctor two years before being diagnosed. It was actually the blood work that showed a spike in my ck levels before I experienced muscle weakness. My functional medicine team is great. I feel healthier than ever and knowing some of my genetic issues (apoe 2,4), I changed my diet significantly and added supplements to fine tune my health. I did stop the supplements though that manage cholestrol. There was a study out of France suggesting that slightly higher levels of cholestrol were somehow beneficial to people with ALS, and additional reports that suggested stations and red yeast might aggravate ALS symptoms. I see my functional medicine doctor every six months and do the battery of blood tests.

 

[gooseberry]

I do not have als but my husband did. I had a full nutrition panel done last summer. I found that even though I eat a healthy well balanced diet, I was low in a few vitamins and essential amino acids. Thru diet and supplements that has improved my general well being.

My husband showed no nutritional deficits besides vitamin d, if I remember correctly. He ate to maintain weight as Tillie said. Some people puree soups, make smoothies, smush up regular food, etc.

 

[DasNZ]

Has anyone tried using a Herbalist for more VE and C ?

 

[KimT]

I think with our without ALS, good nutrition can only help and that includes checking vitamin and mineral levels to make sure you are eating AND absorbing micronutrients.

 

[Atsugi]

I looked up Vitamin E and C and I came away unimpressed. I read a study that said Vit E can help prevent ALS but it's not really helpful once you've got it.

 

[KimT]

Has anyone tried using a Herbalist for more VE and C ?

Why would you need a herbalist to for Vitamin E and C? E is a fat soluble Vitamin so, technically, too much could be harmful. Vitamin C is water soluble and, even in high doses, it is well tolerated.

I'm taking E but not extra C since my diet is very high in C.

It's a hard disease for which to suggest a protocol because they don't really understand it and it runs different for each person afflicted with it.

If you want to see what people are taking for supplements, Wikipedia has a good update with supplements and what they are supposed to do. Also, over at ALSTDI, there are a couple of posters who developed Vitamin protocols or Facebook has lots of groups that deal with natural ways to fight ALS. I'm not sure if anything is really working or if everyone on those sites even have ALS but it's worth a shot if you're trying to explore alternative treatments.

 

[gooseberry]

One thing I have learned in the last several years is that many docs will write you a prescription for a med before knowing exactly what is wrong and the cause. I do a lot of research and figure out many of my issues myself. For example, i was b12 low. I had red raised patches in my mouth that hurt. Several gi, dentists,pcp, viewed the ptches and didnt have a clue. I found it was a b12 deficincy problem because i had taken GERD meds for a long time.