- This topic has 29 replies, 18 voices, and was last updated 3 weeks, 1 day ago by
.
-
Posts
-
-
-
Hi Ron,
Right up front I am not a doctor, or a health care professional in any way.
I have counseled for suicides anonimous and life line, and I do understand the enormous placebo effects that suppliments or other agents, if trusted, can and do have on one.
Naturopathic suppliments comprise of a myriad different ‘natural remedies’. I would suppose solutions that contain the normal vitamins etc cannot do any harm, and of course may, in instances help.
The one thing I am totally against, and I can already hear the roar of disapproval from others, is homeopathy. I honestly and truly believe it is simply “snake oil”, that claims to cure anything that you can think of.
Homeopaths believe that the lower the dose, the more powerful the medicine. In fact, many of these remedies no longer contain any molecules of the original substance. They claim that water has a memory and that is why total dilution is acceptable.
-
I was diagnosed in April 2008. The use of supplements and alternative treatments has allowed me to live without meds so far. One of the most helpful treatments I receive (once a week) is the Patricia Kane protocol which involves receiving 3 IV PUSHES – one each of FOLIC ACID, PHOSPHODITYL Choline (sp?)and GLUTATHIONE (sp?). In addition, I take supplements from CHK Nutrtion. My main symptom has been right Arm and leg tremor. Until Covid I was relatively stable, then the clinic where I receive the IV pushes was shut down for6 or 7 weeks. Symptoms increased some at that time. I remain on the PK PROTOCOL and CHK Nutrition supplements and feel I’m better off avoiding the meds for now. Downside – cost these treatments are rather expensive and not covered by any insurance.
-
-
Thank you Janet. Happy to hear you are managing PD well without traditional meds. I am assuming you have a mild case? I haven’t heard of the Patricia Kane protocol, but I have heard of Dr. Constantini’s B1 protocol.
My main symptom is left arm, hand & finger tremor. I am walking normally but my left leg feels just slightly heavier, and I don’t sleep well. I am currently doing an IV twice per week, as well as natural supplements.
3500mg Glutathione, 500mg Magnesium, 100mg B1 (Thiamine), 1 mg B12 [IV]
-
-
-
-
I see a Naturapath Dr who specializes in Parkinsons. She’s experienced, competent and pragmatic with lots of useful information. Her name is Dr Laurie Mischley. Her practice is in Seattle under the name Seattle Integrative Medicine. You might want to check out her web site under the same name.
-
-
-
-
I am scheduled for a virtual visit with her in a couple of weeks. I am anxious to see what she suggests.
-
-
We have a integrative dr. He uses alternative and prescription meds. My husband had terrible night terrors including hitting me. It was terrible. He likes to try alternative when possible then move to prescribe drugs if that does not work. After 2 years of horrible night terrors and me wondering if I was going to get hurt at night, he never remembered if it happened, he put him on 2 well researched supplements; taurine and Gaba Calm. From the first night and to the present day 3 1/2 years later he has been nightmare free and I can sleep without worry. Recently he had a bad fall and had to go in to the hospital. They would not allow me to give him these two supplements, wouldn’t even let me have them in the hospital. His nightmares started back up again and continued until he came home and I could put him back onto the supplements. He suffered horribly during that period of time with the worst nightmares he’s ever had in his life he said. We will never be without these supplements. I like the GABA Calm myself it is wonderful for anxiety. You can buy them off Amazon they are not expensive. In the hospital he was put on a drug for the nightmares didn’t help one bit. Actually made them worse.
-
-
My husband’s neurologist says PD patients don’t do well in hospitals. We have had mixed experiences in that regard. When he (Alan) was in one of our major hospitals, the doctor bent over backwards to get his supplements into the system. It was the doctor, not the hospital, though. At that stage, I was taking him in an iced coffee with his mannitol in it. I wasn’t going to ask. When I did mention it to this doctor, I found out that mannitol is still used in hospitals for brain injuries, it’s not just a diabetic sweetener!
On his next visit to hospital, I just took the supplements in and gave them to him. I wasn’t going to test the system…naughty girl????
Gwendoline
-
Marlo, Sorry I just saw your post of April, 2022. Can you tell me what dosage of the Taurine and GABA Calm your husband takes? And does he just take it at night? My sister has the same problem nightly. She doesn’t have Parkinson’s, but it is difficult for her husband to get a decent night’s sleep. Thanks!
-
-
I agree with the recommendations to check out Doctor Laurie Mischley’s clinic. I chose to work with her remotely because I became aware of just how good a natural doctor she is. I’d rather have a Zoom appointment with her than have an in person visit with any local natural doctor. She treats each patient as an individual, looking for potential deficiencies that should be addressed with nutrition, supplements, exercise and life style adjustments. She also has collected data on over 2,500 people with Parkinson’s, to correlate PD symptom progression with individual nutrition, supplement and exercise choices and she has consistently shown a correlation between personal choices and PD symptom progression rates. This is a huge step above so many others who base their recommendations on the literature and theory, with very little supporting data. So, yes, there is data that shows that some supplements and food groups are associated with slower progression of PD symptoms. Check out her webpage; https://lauriemischley.com/ and check out her online class (a link on her webpage). In that class, she covers my brief summary above, in much greater detail. I had the same question that you have, a few years back and I chose to proceed with Doctor Laurie’s data driven approach.
-
-
I am French so we do not see this as much different than what you need as you age. . I take tumeric, lions mane and other mushrooms, vitamins like d and b 6,12. and others BEFORE and now with parkinson. It helps me feel normal. I do take 250 c/l and cut it in half. I take the larger part in the morning as i need less for sleeping. I do excercise but similar to what I did before. You have to walk in Paris no matter what. The only real difference is constipation medicine AND anti depressent which the mushrooms solve. I also learnt another language for my cognitive and do strength for voice. In Europe, we learn languages but it is especially good for Parkinson as you speak out loud and use your hands. Grammar, you can make mistakes as not for a job. We stress INtent. I have been lucky as getting older and Parkinson need similar attitudes, vitamins, efforts as aging. But medicinal mushrooms drops seem to have mafe s big difference. Also fresh food and a small glass of wine and people watching in cafe with friends. Patricia
-
I am French so we do not see this as much different than what you need as you age. . I take tumeric, lions mane and other mushrooms, vitamins like d and b 6,12. and others BEFORE and now with parkinson. It helps me feel normal. I do take 250 c/l and cut it in half. I take the larger part in the morning as i need less for sleeping. I do excercise but similar to what I did before. You have to walk in Paris no matter what. The only real difference is constipation medicine AND anti depressent which the mushrooms solve. I also learnt another language for my cognitive and do strength for voice. In Europe, we learn languages but it is especially good for Parkinson as you speak out loud and use your hands. Grammar, you can make mistakes as not for a job. We stress INtent. I have been lucky as getting older and Parkinson need similar attitudes, vitamins, efforts as aging. But medicinal mushrooms drops seem to have mafe s big difference. Also fresh food and a small glass of wine and people watching in cafe with friends. Patricia
-
-
-
Hello there everybody, my name is Debbie Farr and this is the first time I have chimed in on these forums when you mentioned the naturopathic treatments for my PD. I have been investigating several alternative therapies. As far as a medical background does working with, and eventually for, big Pharma since I was 18,(now 64)count for anything?
Basically I’m trying to say is I have extensive knowledge of drugs pharmaceuticals. We worked closely with a naturopathic physician at the Cancer Treatment Center of America in Atlanta.
Her knowledge as well as our osteopathic oncologist and our radiation oncologist our chemotherapy oncologist and numerous counselors therapists chiropractors massage therapist acupuncturist, cured my husband from stage 4 head and neck cancer.
The moral of that story is that I really think you have to have faith and believe that the course of treatment you’re choosing is right for you. Nobody else you. I am investigating and have actually spoken to the physician at a clinic in New York City where he practices ayurvedic medicine. This is from the thousands of years ago in India and in China and all the eastern medicines use a lot of flowers and herbs that they combine into tinctures and creams and tablets. But they don’t stop there before they take you on. As a patient. They talk to you. They find out exactly what your Simpsons symptoms are. The gentleman I am speaking with has a very thick Indian accent and when I say Indian I don’t mean American Indian if anyone’s thinking that I’m talking about Indians where the population is enormous for the size of the country, again apologizing for the inapplicable content of parts of this email.
I firmly believe in the body has the ability to heal itself. One simply has to believe that they can do that also. They have to. Like I said above trust their doctor or osteopath or chiropractor or Yogi or any other non-traditional practitioner. I called the I can’t recall the name exactly because I tried to forget with their costs treatment but it was a location that does stem cell therapy. You fly out there or get out to their facility in the west and you stay for one week and you get this treatment. It is very painful because stem cells grow in the bone marrow and they usually harvest that from your hip, but I don’t know if that’s where the stem cells are located. There are different types of stem cells and they are targeted for each part of the body that is afflicted. They are already using it in treatment for MS and lupus and they are movement disorders as well the hold back treatment is 11,000 not counting your transportation there and back your meals, but of course you’re lodging is included because you’re in the hospital. But I do believe that that is one of the treatments of the future that will eventually lead to a cure. I would also advise you to get some sort of genetic testing done to see is causing your parkinsonism. Is it genetic in your DNA? Is it environmental caused by those chemicals that the lawyers are always calling? Trying to get money for you round up. I think the product is in this case, since I’ve dragged on for 40 paragraphs that you want to do what your heart tells you to do, I’m going to go with the ayurvedic treatment which is 1,800 or $3,000 depending on the length of time your treatment. Last the clinic I spoke to and the physician I spoke to does a CAT scan and MRI and extensive blood tests before they take you on. As a patient they need to know what stage your Parkinson’s is in, what kind of treatment you have already had such as deep brain stimulation which I had 3 years ago in June and they test for heavy metals in your blood. This is something that everybody should be tested for I believe because these heavy metals are very toxic to the body. So here’s my last bit of advice. Think with your head. Think with your heart and don’t make the decision alone, your physician cannot prohibit you from going for an alternative therapy. In fact, it is in their best interest to work with the alternative practitioner, whoever he or she may be Good luck in your journey and I would like to see some positive results when I come back to this forum
-
Ron, I am a gastroenterologist. There is substantial evidence that PD has it’s origins in the gut. Studies confirm that decades before the neurologic manifestation appear, gut symptoms, particularly constipation arises.
scientists are working diligently to prove causation between the entry of toxins, food antigens and microorganisms and PD.
I always recommend a careful assessment of what goes through the mouth into the remainder of the gut with the mouth being a area of critical focus.
There is a clear sssociation between oral dental pathology, decay and gum disease (periodontitis) and PD.I make the point with patients and those learning to be doctors that every time we eat or drink we are either feeding disease or fighting it!
I have a booklet that I have written that I share with my patients. I can attach one to an email, if you like. It is for educational purposes only and can not be sold or otherwise reproduced.
All the best
Dean C Kramer MD
-
Hi! I am new to the PD forums, and this will be my first time to post. I was clinically diagnosed with PD in October 2016. My PD is left side dominant and at this time doesn’t seem to affect my right side. My issues have been rigidity, walking gait, and control of balance or loss of balance whichever the case may be. In July of 2022 I started taking glutathione infusions. I feel like I have benefitted greatly from these infusions. Prior to starting these infusions tripping and loss of balance resulted in nose plants to the floor, I could not wiggle my toes on my left foot into a flip flop, I couldn’t scrub my head with my left hand when washing my hair because of diminished range of motion, walking across uneven terrain was difficult, and to turn around had to be done very slowly and controlled. Since beginning these infusions, I have reversed many of these issues. I can put a flip flop on my left foot now, I regained my range of motion in my left arm so I can scrub my head when washing my hair and I haven’t had a nose plant because my balance has gotten so much better. I chose not to tell my PD doctor when I started the infusions but will be seeing him this month and will be sharing with him my glutathione infusions and how I believe they have helped me. My pain doctor’s clinic offers an infusion lab, so I have access to other infusions if I want. Besides what I feel it has done for my PD, glutathione offers these benefits as well: Powerful antioxidant/reduces oxidative stress; anti-aging benefits; anti-inflammatory benefits; improves insulin resistance; improves circulation; breaks down toxins & cancer-causing substances; disease prevention just to name a few from their glutathione information sheet. But the most important piece of information from their glutathione sheet is REDUCES SYMPTOMS OF PARKINSON’S WITH REGULAR INFUSIONS. I hope this has been helpful for those of you who are exploring alternative treatments for PD. I do not know if there have been any peer review studies on glutathione and PD, but I learned of this alternative treatment from Dr. Perlmutter. He has a Utube video showing a PD patient he was treating with glutathione. I believe he is a neurologist in Florida. The results are amazing to watch. If you enter his name with Parkinson’s you should be able to pull up the video I am referencing. I am sure there are a lot of doctors who would see this as “voodoo” medicine. but for me personally it is helping my PD symptoms or at least some of them anyway.
-
Dr. Kramer – I am interested in receiving a copy of your pamphlet via email. But I am reluctant to put my email address on this site if that is what I’d be doing. Haven’t reached out before to a participant in a chat before and trying what seems might work within this chat site. I’m hoping that you will see this request for my own educational purposes (I tend to agree with your gastro hypothesis from both study and experience). I would like this pamphlet as intended for my own education and will not share or otherwise use.
Thank you. Hope you receive this and are able to comply.
-
I had written a visual request for a copy of his pamphlet in the “text” link, but I don’t receive or send “texts”. no “smart” phone. I have a access to send and receive emails which is the way I participate in this site. I repeated the request in the “visual” just prior to this P.S. so that if Dr. Kramer does receive my request he can/will respond via email and not via texting.
Here’s hoping.
-
First I am not a healthcare professional and can only offer my personal perspective. I suggest looking into a company called CHK Nutrition and also research the Patricia Kane protocol. The CHK products can only be acquired and used with doctor supervision. If you email the company thru their website and request a list of providers in your area they will send the list to you. Their supplements are plant based and are said to naturally raise dopamine levels. My experience has been positive. I was diagnosed in 2008 and began the supplements about Sept 2008. My main symptom is tremor. To date, I do not take medication for my PD. I do take a regimen of these supplements under doctor supervision.
I also receive the Patricia Kane protocol once per week. For me that consists of 3–IV pushes- one of 10cc Glutathione along with 10cc of sterile water. A second of Phosphodityl Choline (not sure of the amount) and a third IV of Leukovarin ( not sure of the amount).
I recently (last week) saw my regular neurologist. He does not endorse my use of supplements and always offers me medication. However, He has said he thinks I’m doing exceptionally well and remarked that he wouldn’t change anything if he were me. I attribute my success to the consistency with which I have followed this program and the kindness and support of the dr who supervised it.
On the downside – none of it is covered by insurance and so I spend a fair amount to maintain these programs. Another advantage I have found is that I have not been sick at all for the past 13 of the 15 years I’ve been on it (no colds, flu, Covid, etc). I hope you find this info Helpful and if you decide to try any of it, i hope you have as good an experience as I have had.
-
Great Forum. Thanks for this. We too were impressed with Laurie Mischley but could not get into her. Saw her partner at the time. Like another participant said, you really have to believe in something and follow through with treatment. Laurie’s protocol is fairly strict and my husband just couldn’t adhere to it. Then came the pandemic and the wheels really fell off the bus. Saw her partner again and received a B 12 shot that should have made Jer feel better. Alas, it didn’t so of course we lost faith. It’s very difficult to try new things and see no results in several months time. Perhaps that’s not long enough. Guess that’s where the faith in your protocol comes in. Speaking of which, has anyone had success with Neuralli? Saw it on here I think and bought some but after a month, have seen no improvement in anything!
Also tried chiropractic work after we heard a woman on the radio say how it helped her PD immensely. Not so for us.
So it seems I’m always trying something for Jerry but to no avail yet. Great topic though. Now I’m checking this out!!!
-
- You must be logged in to reply to this topic.
