I’m getting pretty desperate here as hubby can no longer tolerate any dopamine therapy. He’s only 61, can barely speak or walk, and I have to help him with almost everything.
There’s actually not much out there on the horizon, but considering trying it with Buntanetap or neflamapimod (for Lewy Body), as I don’t know if he’ll live another year to see if these get FDA approvals.
Due to his cognitive decline, he’s not eligible for DBS, FUS, most trials, and my guess is even stem cell therapies would cause him trouble as tiny increases in dopamine make him crazy,
Curious your thoughts?
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LeharLover62
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What type of therapy are you hoping he could get with right to try? I wonder what would happen if you would email the researchers who are developing the more recent therapies and asked about right to try and if they expect the medications to be available within the next few months.
Have you investigated the possibility of Focus Ultrasound? or perhaps some neuromodulation devices ?. I agree with you that right to try should apply to people with PD. There are so many different avenues on the path of PD treatments. However the funds don't provide enough money for research. Except when big pharmaceutical companies get the most respect. You can see this when you see the various trials and reseach when they only a few applications.
Some people need to take a good quality multivitamin to enable the B1 HCL to work properly. I call it the refeeding syndrome although that might not be the technically correct term
I would love it if he could even tolerate a multivitamin. He’s so sensitive that even that would trigger psychosis (for example, niacin, folate are known triggers for him)
I have spoken with Dr. Micschley's office and they are very nice. We are in Idaho and she is in Seattle, Wa - they offered me a face time appt. if that helps. She has several doctors there that she has trained.
I'm signed up to start right to try next year. It's easy to do. It requires you to have exhausted every treatment that is offered but since there is no treatment for Parkinson's just treatment for the symptoms you basically just fill out the paperwork. I'm going to Hope Bioscience in Houston for stem cells. They are having amazing results in their FDA trials. The bad part is you have to pay out of pocket.
I think it's currently $5700 per treatment. Since it is not FDA approved yet they have to offer it at their cost. At the first appointment they do blood work and extract a tbsp of fat. Back in the lab they separate the stem cells out and using their own method they multiply the stem cells for quite a few days. Then the cells are administered through IV. You get your own cells.
Dr John Bergman now has a clinic in Tiajuana and is doing stem cell therany. He lives in California and has a clinic there. He is a chiropractor and has treated Parkinsons patients. Check Youtube for "Dr John BEggman Parkinsons".
I think it's currently $5700 per treatment. Since it is not FDA approved yet they have to offer it at their cost. At the first appointment they do blood work and extract a tbsp of fat. Back in the lab they separate the stem cells out and using their own method they multiply the stem cells for quite a few days. Then the cells are administered through IV. You get your own cells.
Lucky you to live so close. I read an article about their first trial in the Houston paper and contacted Hope directly. They have some videos on YouTube explaining their protocol and stem cells in general . Their stem cells are such high quality that other places that conduct trials get the stem cells from them and you couldn't wish for nicer people.
I just found this clinic that treats parkinsosn and does lots of tests that you dont get with NHS to help you get healthier. We had a free 25 monute chat with Max on the phone and he gave us lots of advice. It may be helpful for your husband. My hisband wants to come off his madapar due to side effects and Max has a macadopa natural alternative capsule which we are going to try him on. But he also advises on diet and lifestyle too. parkinsons-alzheimers-clini...
Hm…well he’s been tested for those many times and supplemented b12 ( but he can only tolerate small amounts of b vitamins) I think his B6 and folate were on the lower side last test.
Yes, high homocysteine levels can cause dementia and other mental issues. However B12 lowers homocysteine. Also, B6 is depleted by Carbidopa so it needs to be replenished but with small doses of 3 to 5 mg per day. You should consider vitamin injections as well.
you really should call Dr Mischley. You can do a zoom type appointment and she doesn’t rush you at all. The appointment is about 2 hours or less. She is great and very well respected in the neurologists world
I second that recommendation. It certainly couldn't hurt. I purchased access to her "PD School" and have been working my way through it. There's so much helpful information.
Have you considered red light therapy, or the Dr Tass gloves? There are a number of people making the gloves linked to this forum. Dr Hamilton in Tasmania, Australia, introduced Red Hat therapy several years ago.
I do understand your concern. My husband has advanced PD as well. His neurologist had him on the highest dose Rytary 61.25 Carbidopa/245 Levodopa x 5 doses (total daily 306.25 /1225) + Pramipexole until 2 years ago. After the neuro moved away, I began exploring alternative treatments for my husband as he was experiencing many reactions (vision problems, chest pains, severe incontinence etc. )
We found a local PCP who is willing to work with us using natural means. I rejected ALL of my heart pharmaceuticals due to severe reactions and I went to totally natural treatments. (I had a heart attack and have 4 stents). My health is improving with my heart problems under control and my diabetes is gone.
The PCP allows me to monitor his daily PD treatments and report to her every 4 months for blood work and review of treatment. I have changed his dosage several times in the last couple of years.
We have been able to get his Rytary (36.25 C/145 L) down to 3 doses per day (Total 108.75/435 per day). I also give him Mucuna Pruriens - 100% Natural Levodopa from Nutra Vita with daily total 2250 mg. He also takes large doses of Green Tea Extract (EGCg) to replace the Carbidopa effects . He is doing much better than when he was on the high dose Rytary alone.
I am discovering that his problems were emanating from the synthetic carbidopa and not so much the Levodopa.
We anticipate getting him completely off the Rytary some day.
We are now facing the problem of Parkinson's psychosis, but I have discovered what kicked it off. We had Covid back in August and that is when the psychosis started. We have notified our PCP and we are discussing treatments. She has suggested Methylene Blue and infrared light for his overall health, and we are awaiting our order to begin that path as well. In the meantime he is using his insight and discernment to control these hallucinations (asking me if I see what he sees and if not, he ignores the problem)
He has begun to have more balance problems so we were able to secure a Rollator walker and he is now walking more and getting more muscle strength.
I have learned in the last few years to not be afraid to reject the pharmaceuticals and to trust (Prov3:5-7) that the Creator has supplied all our needs when he made plants for food (Gen. 1:29-30).
Not all people react the same way to treatments and we must all deal with the every day problems we encounter concerning our health.
I’m so sorry you’re having such trouble. He’s lucky to have you. I didn’t want to know that Dr. Mischley isn’t taking new patients . Unless that changed in the last week or they didn’t put it on the website correctly. But there are other people there who have studied under her.
I went to one and they were very nice but I get discouraged because they said in our appointment “ I’ll help you respond to the medication“ and then they added “ until you don’t.” I didn’t want put a name here because perhaps I misunderstood. Or am too sensitive.
And I guess you could applaud potential realism. But I just couldn’t.
It’s not FDA approved or anything like that but there’s also the fecal transplant effort. I don’t know if that something to look into. Not something anyone wants to pursue in away but it sounds helpful if researchers would pursue it
Again I’m sorry. It’s a hateful disease and a butt kicker.
I emailed Annovis bio to inquire and the president herself responded:
So sorry to hear about your husband: he is so young.
Our present study is completed and we will have data at the end of January. At that point we will conduct some subgroup analysis to see, if our compound helps in advanced Parkinson's disease.
I was just searching online for a physician who would prescribe my sister buntametapp via compassionate use. Why not? Parkinsons' reduces life expectancy so both your husband and my sister should qualify. And they know buntametapp is effective with little or no side effects. Any docs out there know why we can't do that?
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Recording available - Dr. Jonathan Sackner-Bernstein: "What If I Discovered the Silver Bullet?"
PD Frustration
Macuna Pruriens - people were asking about this herb and this is info of the web - but it is an interesting article. 
NAC symptomatic or disease modifying? 
Don't keep fixating on dopamine to alleviate your lack of energy.
