[trixiedee]

Hi, I'm new here. I have been diagnosed with MS for a few years but my symptoms have become more PD like so I recently had a DATscan which showed low dopamine levels. My neuro has never come across someone with both diseases before and is quite puzzled. I have never taken any meds for the MS as the side effects seem too much and am even less prepared for the PD meds side effects. I am booked in to see an ayurvedic healer who will give me mucuna (I don't want to self medicate) and whichever other herbs she thinks are appropriate. I do yoga and have acupuncture, homeopathy and Bowen technique. But I am very weak, stiff and can hardly walk - am hoping the mucuna will help.

I am only 43 and a single mother of 6 yr old twin boys so life is pretty stressful which doesn'thelp...

Any advice or support would be greatly appreciated.

Trixiedee

[RLSmi]

Originally Posted by trixiedee

Hi, I'm new here. I have been diagnosed with MS for a few years but my symptoms have become more PD like so I recently had a DATscan which showed low dopamine levels. My neuro has never come across someone with both diseases before and is quite puzzled. I have never taken any meds for the MS as the side effects seem too much and am even less prepared for the PD meds side effects. I am booked in to see an ayurvedic healer who will give me mucuna (I don't want to self medicate) and whichever other herbs she thinks are appropriate. I do yoga and have acupuncture, homeopathy and Bowen technique. But I am very weak, stiff and can hardly walk - am hoping the mucuna will help.

I am only 43 and a single mother of 6 yr old twin boys so life is pretty stressful which doesn'thelp...

Any advice or support would be greatly appreciated.

Trixiedee

Have you ever heard of low-dose naltrexone? It is an approach to treating both MS and Parkinson's that many have found very helpful. It does not offer a cure for any of the diseases that seem to respond to it, but many find that it daramatically slows, or arrests further degeneration.

I suggest, if you are interested, that you check out the website of lowdosenaltrexone.org., or just ldn.org.

When I first heard about this approach about 5 years ago, I began following research in how morphinans, the class of drugs which includes naltrexone, supress neuroinflammation. Neuroinflammation is involved in the damage and eventual destruction of neurons in MS, Parkinson's, ALS, and Alzhimers diseases.

Dextromethorphan, another morphinan drug which is the main ingredient in many over-the-counter cough syrups, was found in certain research using animal models of Parkinson's to be equally effective in preventing the destruction of susceptible brain tissue lost in the untreated animals. As a result, I began taking dextromethorphan using exactly the same protocol recommended for naltrexone. The primary advantage this has for me is that the dextromethorphan requires no prescription, wereas naltrexone does.

Two key features of these approaches are:

1. Either drug is taken at extremely low daily doses, less than 1/10th the dose recommended for the original purposes for these substances.
(Naltrexone was approved by the FDA in about 1985 as an aid to break heroin or alcohol addiction. Typical dosage was 50 milligrams per day. Typical doses in the low-dose regimen are 3-4.5 milligrams per day. In the case of dextromethorphan, an adult dosage for cough control is also about 40-60 milligrams per day. Those of us who use it for its putative neuroprotective effects typically take 4 milligrams per day.)
This feature gives confidence in the safety of this approach, both drugs having been used safely for many years at much higher doses.

2. Both drugs are inexpensive! This is especially true of dextromethorphan.

Please understrand that use of this approach to slowing the progression of MS or Parkinson's amounts to a personal experiment. Neither of these drugs has been approved by the FDA for treating any condition other than the ones for which they were originally intended. Your neurologist may never have heard of low dose naltrexone, or may be adamantly opposed to either its use or the use of low dose dextromethorphan.

I am not recommending that you begin using this treatment approach, only informing you of its existence.

The only completed published clinical trial of low dose naltrexone was in treating Chron's disease, conducted by a Dr. Smith at Pennsylvania State University within the past two years. The result was extremely positive. Chron's is also primarily a disease of inflammation, one of the inflammatory bowel diseases (IBDs).

Whatever you try, I hope that you find a treatment that works well for you.

Robert

[trixiedee]

I tried LDN a few years ago - it didn't stop me deteriorating and made me much stiffer so i stopped taking it after abut 8 months. I didn't like the idea that I was self medicating with no medical supervision. I live in the UK so not sure if I can get DXM here. Does it help with mobility?

I am really disappointed to have no other replies - I was under the impression that a few people on here didn't take meds. Also was looking for support as I'm not getting it anywhere else - maybe this is the wrong forum for me...

[Chemar]

Hi and welcome

just wanted to let you know that the forums always slow down over the weekends as many are busy with family and other weekend activities. When members return to their computers during the week you are sure to have more replies

[lindylanka]

Hi,
I am not doing the holistic route, but thought as I am also in the UK I would reply to you, and help keep your query there as I am sure that there are others who even if they are not wholly holistic, i.e. are taking low doses of PD meds plus alternative treatments, would have an interesting perspective for you. There are others who are not medicating yet, too. Do not lose hope, someone will pop up, perhaps Auntie Beans posts would be useful?

In the meantime welcome to the board, there are loads of very supportive people here, keep posting, and do not feel that you will not get help here, it is a good place to come. We are all in the same boat with PD and you ARE truly welcome here!

Lindy

[Fiona]

Yes, you are welcome here - wanted to echo that from the Other Shores side of the world. The thing is, I don't think there are a whole lot of people out there who are going holistic to the point where they are choosing not to do the meds. I would give a lot to be in your shoes in some ways because while you are still at the moment of not having started with them, I think there are many things you can try.

While I have and continue to pursue alternative solutions, I think it's a whole different ballgame once you get on the medication. It's very hard to go off it, and it complicates many of the other things you might try.

I personally think Ayurvedic treatment hasa helped me - it might help you a lot more because you don't have to fight through layers of synthetic chemical effects to get to whatever is ailing you. I went to India for my treatment, and kind of can't imagine doing it another way, although that may be a very limited perspective.

I do know a few people who have stopped some degree of the medication - I think people that aren't taking meds generally don't post a whole lot here - although there are definitely exceptions. Also there are people here who have minimized their meds significantly (Ron Hutton and others) and people like me who have made autaunomous decisions to stop one aspect of them, like the dopamine agonists, or the other way round - to pursue the agonists and not the l-dopa therapy.

I suggest you look around this forum and search for some of the threads concerning Ayurvedic treatment, mucuna pruriens, glutathione therapy, amino acid or neurotransmitter therapy, hypnotism, ear acupuncture implants, fava beans, exercise modalities - there are a lot of ways to approach it -and while I know it's time-consuming to read and digest, there is a lot of good info here to be uncovered also.

You could also look at sites like parkinsonsrecovery.com, and parkinsonsonline.org for some alternative views of things. In light of your DAT scan, I''m not sure how to comment...we don't routinely do those in the US, and I'm not sure how they are read in Europe. Does low dopamine activity definitively indicate the death of neurons, or even the appropriate response being to address that with synthetic dopamine replacement? I personally question those assumptions...

I guess the thing is that you will have to figure out what is right for you, and a lot of that work you will be on your own with in terms of collating and evaluating information and different ways to go. There's no real alternative protocol widely in use, I don't think...My personal reccomendation is to keep questioning the status quo thinking about this condition, because I think much of it is based on paradigms that have not been updated nearly as much as needed, and have been extremely influenced by market forces. So it's a lot of work to go the route you're thinking of, but I think there's a lot of hope, too.
Fiona

[reverett123]

First, NT is not as active as it once was, but new faces are drifting in, so it may shine again. It is the best forum for those seriously looking for alternatives. The ones who have passed this way before you have left an incredible trove of information on their own experiments in the archive. Learn to search it and add your own experiences fot those who wil come after you.

Fiona is right. You are in a position that allows you to try things that those of us who are already addicted to the drugs cannot. Since you want advice, I will offer some. Opinions, actually.

The day may well come that you decide to go on medication, but postpone it as long as you can. You need to be aware of what is going on in your brain. While causes can be debated, the actual destructive processes are pretty well established.

Neuroinflammation is number one. It is the activation of the immune system within the brain itself and kills neurons as innocent bystanders. Outside the brain you have inflammation per se which acts in a way that keeps that within the brain agitated. Search the archives and learn about turmeric and curcumin.

Oxidation is number two. It is a normal byproduct of metabolism but causes problems in the brain. This arises, in part, from inefficiencies of our cellular power generators, which is number three. For both two and three you might want to read about a combination of alpha lipoic acid and acetyl-L-carnitine.

Excitotoxins is number four. Certain amino acids overstimulate the brain. The two worst ones are glutamate and aspartate - as in the food additives monosodium glutamate and aspartame. MSG is particularly hard to avoid, and it is deadly stuff.

There are two things that are proven to stop or even reverse PD. One is exercise and the other is caloric restriction.

Those are some basics. Good luck.

[trixiedee]

Thank you Fiona for your intelligent post - you are expressing exactly what concerns me - that deciding to take meds is a one way street. I would love to go to India for ayurvedic treatment but being a single parent that's unlikely. Where did you go and what did they do, how did it help?

As for my DATscan - all my neuro has said (by email) is the results are abnormal. He has been trying to get me to take L-dopa for a year or so based on my symptoms.

[soccertese]

tried many alternatives
chelation
glutathione iv's
every supplement you can imagine.

might have made a difference in slowing progression but had little affect on symptoms

bottom line to me is you need dopamine, can't get around it. mucana is just another dopamine source. no way to replace dead/damaged neurons. the blood brain barrier prevents most chemicals from reaching your brain.
imho worth pursuing supplements/lifestyle that can reduce the need for meds but i think it's impossible to go without meds. i went about 5 years after diagnosis without meds and 10years later can get by with 100-200mg sinemet and 200-400mg cr sinemet daily.

anecdotally, i was very athletic for those 5 years playing soccer twice/week, running daily but stopped because i had to start meds but refused to take dosages sufficient to let me to continue to play soccer, i wonder if that was a wise move because once i stopped playing progressed faster. maybe just a coincidence.

so i see the challenge in finding the right neuro and the right meds/dosing to allow you to have the highest quality lifestyle rather than trying to find some magic bullet. and exercise, exercise, exercise and hope for that magic bullet. levadopa is technically natural:
L-DOPA (L-3,4-dihydroxyphenylalanine; Levodopa; Sinemet, Parcopa, Atamet, Stalevo, Madopar, Prolopa, etc) is a naturally-occurring dietary supplement and psychoactive drug found in certain kinds of food and herbs (e.g. Mucuna pruriens, or velvet bean), and is synthesized from the essential amino acids L-phenylalanine (PHE) and L-tyrosine (TYR) in the mammalian body and brain. L-DOPA is the precursor to the neurotransmitters dopamine, norepinephrine (noradrenaline), and epinephrine (adrenaline) collectively known as catecholamines. Aside from its natural and essential biological role, L-DOPA is also used in the clinical treatment of Parkinson's disease (PD) and dopamine-responsive dystonia (DRD).

[trixiedee]

Reverett. I already take curcumin as it's also goood for MS and I have avoided aspartame and MSG for about 20 years because I can't stand the taste of artificial sweeteners or the effect of MSG. I eat healthily although I don't avoid gluten and dairy.

Will look into alpha lipoic acid and acetyl-L-carnitine.

"There are two things that are proven to stop or even reverse PD. One is exercise and the other is caloric restriction."

I do yoga but don't have much energy for excercise. Caloric restriction? I am already quite thin and very depleted - how can that help?

Thanks for the advice...