Lonely in China

[C2R2yip]

Hi, I’m a retired Australian 70+ living in Chengdu China, searching for alternative medicine to arrest my Parkinson’s, since June-2012; so far nothing worthwhile has happened.

Below is a brief summary of events :—

A. Oct-2010 was told by my Sydney medical specialist that I’m having early PD, could have started about 2 years ago and no medications is required for next 2-3 years.

B. Feb-2012 was offered a redundancy package which I took.

C. May-2012 landed in Chengdu to begin my search.

D. May/ Oct-2012 being to a Chinese herbal doctor, end result negative and with both feet having marks as a result of exortic medicine.

E. Jan/ Oct-2013 being to a qigong master who massaged me, end result slight improvement

F. Mar/ Nov-2014 being to a special doctor who inject medicated self-dissolving twine, end result nothing worthwhile mentioning

G. Mar-2014, brought an exercise bike and begin cycling for 6-8 kg per day, 5 days per week.

H. L

osing hope...May-2016 my wife begins her self taught on origin point medicine, a massage system ( see link below ); and she massaged daily initially for first 4 months, and then once a week, then once a moth...end result on going

I. Jun-2017 starts to have a veggie health food supplement, contains 159 types of cereals, fruits, nuts, mushrooms and veggies....end result on going

J. Jul-2017 begin to do qigong exercise for half an hour daily...end result on going

K. May-2018 brought another exercise machine, increase exercise time to 2 hours per day....end result on going

[Farooqji]

Suggest to try ibogaine

[danfitz in reply to Farooqji]

I second iqbaliqbal’s suggestion. If you try it please post your experience here.

[hanifab23 in reply to Farooqji]

I searched Ibogaine it is used for drug treatment fort drug addicts

can you please send me the site you order Ibogaine

[danfitz in reply to hanifab23]

Addiction treatment is one of the uses for ibogaine. The dosing for addiction treatment is known as a “flood” dose. The dosing for PD is much less and is known as “micro” dosing. Interestingly, since I started micro dosing I have not had a drink or the desire for one. But I don’t drink much anyway.

Iqbaliqbal posted two sources in an earlier post. The thread title is Iboga.

[C2R2yip in reply to danfitz]

Thanks kindly for your info

[C2R2yip in reply to Farooqji]

Thanks kindly for your response and concern.

[M_rosew]

I'm not sure why you are searching in China for a PD treatment. If they had found a cure there, surely they would publicise it. Meanwhile innovative work on 'neuro plasticity' is being done in Australia. Look at <pdwarrior.com>.

If you do go back home, get your GP to refer you to a Neurologist specialising in PD and a Neuro Physiotherapist. Carefully prescribed PD drugs + specific PD excercises could be beneficial.

[C2R2yip in reply to M_rosew]

Thanks kindly for your info

[Astra7]

Come home. Surely we have better health care than china and we certainly have cleaner air!

You can get massages quite cheaply now from those little places that have popped up all over. Pretty much exclusively manned by Chinese staff. I've never had a bad experience yet.

[Hidden]

I see you have just joined HU. If you are truly looking for alternatives to standard PD medications, you have come to a very good place with an assortment of just such! You will do yourself a huge favor by spending much of your free time reading here. There are many people here who have had good results with some of the alternatives that are mentioned here fairly regularly!

A couple of popular alternatives that are mentioned are mucuna pruriens, ibogaine, thiamine/ vitamin B-1, mannitol and PEMF among others. Thiamine seems to be one of the more popular ones and is relatively easy to take. Dr. Costantini in Italy has treated over 2,500 patients with thiamine in combination with Levodopa and reports very good success with his PD patients who use it. There are quite a few members of this forum who have found significant benefit by adding thiamine to their current regimens. Here is a link to a post where some members have described their results related to adding thiamine to their regimens. This will give you an idea of the potential of adding B-1 as a supplement.

healthunlocked.com/parkinso...

For now, I highly recommend that you read, read and read some more on this forum! Good luck!

Art

[C2R2yip in reply to Hidden]

Thanks kindly for your concern, I’ll certainly be spending more time here.

[Motherfather]

theres a place in beijing i went to that does stem cell it dont cure it but it helps,i went there its expensive,its called the wu medical center.regards.

[lempa_nik in reply to Motherfather]

Motherfather, what's the point of recommending a treatment that cost you around $25,000 and gave relief only for a few months? The cost/benefit ratio does not appeal.

[Motherfather in reply to lempa_nik]

well u had to be in my shoes when i done it i was very bad.i could feel my face freeze .so when i got it done and went home my kids all noticed a big differents in my face.that alone made a differents to me..they told me every thing i wanted to know and they did what they said they would do there.i paid a specialist here 400 dollars for 15 or twenty mins and he told me there was nothing he could do so i would not think twice about going again.its only money.plus it was a holiday for me as well.regards,,

[lempa_nik in reply to Motherfather]

"25 Grand? Oh, chump change, peanuts--it's only money!" I like your debonair attitude, though I can't emulate it.

[PDConscience in reply to Motherfather]

MaPa, If one has a few thousand dollars to burn, subjecting oneself to a sham procedure for the brief window of 'placebo effect'' it affords (and the 'holiday'?) may seem worthwhile. I note your comment that "they did what they said they would" which, of course, begs the question: What exactly did they promise they would do in return for your US$25,000 that convinced you that flying to China would be a good investment? Surely the offer of the mere 'possibility' that it may slow the disease's progression a bit would not be good enough... even among their most desperate target group of customers.

Wu Stem Cells Medical Center (like all who prey upon the chronically ill) claims that its stem cell treatments will treat an extensive range of chronic ailments including Parkinson’s disease, multiple sclerosis, ALS (Lou Gehrig’s disease), cerebral palsy, autism, Batten disease, muscular dystrophy, cerebellar ataxia, strokes, epilepsy, encephamyelitis, and Alzheimer’s (BS meter should start blaring here). Nevertheless, in their nearly 2 decades of operation, the best these scamsters have to offer in terms of successful outcomes continues to rely upon carefully worded declarations on their website and, of course, upon the effusive optimism of a few still basking in the fog of their placebo phase.

For a more credible/typical case study, however, one might consider an ALS patient named Keith Miner (aka KM2149) who on an ALS forum on 5/12/14 stated (RE Wu Stem Cell Medical Center) , "I leave tomorrow il be posting how the treatment is going on my Facebook page and als news Facebook page. these are the exact same cells as Emory university trial cells from 8-12 week old fetus from the company neuralstem. they have been doing it 15 years. I just wish I knew about this sooner. very disappointed that the doctors don't tell us about proven treatments over seas. I'll be there 3 weeks leave tomorrow."

When another forum member questioned his "proven treatment" contention and his rationale for embarking on such a risky/costly undertaking with no real proof of viability, he (in a similar mindset as yourself) replied, "there is lots of proof. just research it, talk to doctors about fetal cells . read all the people who have been helped by these certain type of cells. Just read about the current drug trial at Emory. there is all kinds of proof u just got to read and talk to people... I love prooving negative or skeptical people wrong."

When still another urged caution, he replied, "I don't have time for negative people like u. u r ridiculous u didn't research anything u just found a couple things. call around talk to doctors about China not sloppy Mexico CHINA. dude u really should change your outlook on ur situation and become positive and hopeful it will go along way." Forum Thread: alsforums.com/forum/general...

A few days after his return from China he posted, "I have a blog going about my trip and treatment in China. you could read all my posts so far at keithsalstreatment.blog.com. still waiting to see how much it's going to help cause it takes 3-6 months for the cells to grow and maintain. so far id say it was worth it the bursts of strength I get is pretty neat. read the blogs from the very first post to my latest post. it will be easier to understand how it's going so far." Forum Thread: alsforums.com/forum/general...

Shortly thereafter, his blog went down and he has been ominously silent on the matter ever since.

Unless/until you manifest more tangible improvement than the kids noticing a 'big difference' on your face, and until you get a better understanding of the current realities and limitations of stem cell technologies, it may be best to refrain from advocating Chinese stem cell services to others seeking LEGITIMATE solutions.

Wu Medical Center's historical highlights: medium.com/matter/untested-...

China's regulated (but never enforced) stem cell industry (note Wu's mention): nature.com/news/china-s-ste...

Stem Cell Basics: closerlookatstemcells.org/s...

[Motherfather in reply to PDConscience]

who are you to tell people to refrain from telling there story here on healthUnlocked,, people here ask questions about different things.if you dont like the answers then refrain from putting people down, we are all here to tell our stories about our pd if u dont like the answers go fly a kite.

[PDConscience in reply to Motherfather]

Telling your "story" is entirely acceptable, recommending that others replicate your witless blunders is reckless and helps no one. Click the links provided and become informed.

[Motherfather in reply to PDConscience]

i dont need to hear that complete crap from you cobber,, your just a waste of peoples time your rude and nasty so do what the seagulls do and flock off.

[Jumex2017]

My husband had pd since diagnosed last sept. He has all the symptoms but he eats a guinoa oats breakfast with Chia, grounded flax, blue berries and apples. On top of this I add dried pumpkin seeds . He doesn’t suffer from constipation but after taking dr C’s treatment of high dose of b1 complex he’s able to walk for longer distances and seems to be happier. He’s only started taking this b1 about 19 days ago and I can see a vast improvement apart from this he also takes magnesium and q 10

[C2R2yip in reply to Jumex2017]

Thanks kindly for your info

[Ranico]

Have you looked at Mannitol ? clinicrowd.info . Please contact me directly if you have questions. First results of Mannitol have been published and they are encouraging. Mannitol is FDA approved food additive and can be bought anywhere. Please also see this post - healthunlocked.com/parkinso...

[C2R2yip in reply to Ranico]

Thanks kindly Ranico, I’ve not look into Mannito and will try when time permits

[Gioc]

Also in China they are interested in the thiamina of Dr A. Costantini

nrronline.org/article.asp?i...

[Imdefeated in reply to Gioc]

My husband started the B1 HCL vitamin (thiamin) 4 days ago. The difference is remarkable! He started at 500 mg tablet once a day and is now taking a thousand mg once a day. Do the research on doctor Constantini, It's well worth your time!

[Bolero]

My advice would be to increase your Qigong to 45 minutes or an hour for six days a week. It has an accumulative effect and helps in a lot of areas, ie sleep, constipation and general movement. You could also investigate Zandopa which is a commercial formulation of mucuna puriens. I did a lot of research on this product, but found in the finish that I couldn't take it because I also take Warfarin. There is a really good little book written on Mucuna by a Spanish neurologist called Dr Rafael Gonzalez Madonado and you can by it on Amazon. Good luck in your quest mate. Robson

[C2R2yip in reply to Bolero]

Much appreciated and thanks kindly Robson.

[V-Seath in reply to C2R2yip]

RE QI GONG; TRY ZHI NENG - MEDICAL QI GONG ORIGINATING FROM DR PANG (RTRD). LOOK FOR ZHOU ZHIHAO, LING TONG & SEVERAL OTHERS. ALL DR PANG GRADUATES. ALL HAVE ONLINE PRACTICE AS WELL AS PERSONAL SESSIONS TRY LING LING WANG AVAILABLE TO WATCH ON YOUTUBE.

WHEN THEY TEACH IN UK THERE ARE ALWAYS PD PEOPLE IN OUR GROUPS

[Hikoi]

What were you expecting in China C2R2yip? Had you heard of successful treatments?

PD is progressive and so far we cannot reverse its progression and have no cure. What we may be able to do is slow progression.

You will be told otherwise but then those who claim miracles cannot introduce you to anyone who has successfully reversed or cured their pd. There are plenty of people trying out different things but still early days and these people are generally in the early years of pd.

Personally I find the thiamine treatment interesting, maybe it will alleviate symptoms.

I think alternative suggests that it and conventional treatment are in opposition. I accept conventional treatment and add other treatment as complementary.

[Gioc in reply to Hikoi]

Hi Hikoi,

A barred door is "I already know everything and I have nothing new to know." I appreciate your attitude that is not this, but of curiosity, research and critical evaluation necessary with constructive intentions. I always read your posts with interest.

GioCas

[Hidden]

Hi C2R2yip,

I have been researching alternative treatments to PD for over a year as my husband, age 79, was diagnosed a year ago. We knew he had it before he was diagnosed from his symptoms. He's on no medications and is doing well, still driving and doing the tasks of daily living although more slowly. He has most of the symptoms of PD, not all.

The most encouraging news I have found about healing from PD, not just reversing or improving symptoms, comes from two sources - Howard Shifke and Janice Walton-Hadlock. Their websites are for Howard: fightingparkinsonsdrugfree and for Janice: pdrecovery.org.

Janice actually discovered the cause of PD; she herself had PD, is now free of it, and has worked with many PD individuals who have healed as well. Howard used Qi Gong and was familiar with Janice's research. Howard coaches PD individuals; five PD individuals whom he coached have also healed from PD. Janice has a free e-book which I have read most of. Howard has a book on Amazon which I also read.

I'm talking about complete healing attested to by their neurologists. I don't know why this information is not more widely publicized on PD websites, but I consider it a great blessing that I found it very recently.

Whether my husband uses the techniques that Janice and Howard have discovered is up to him. I've done the research, so now I have to step back and leave his healing journey up to him.

I hope this encourages you as you check out this information. There is a cause for PD as is true for all adverse health conditions. Some individuals have used this information to heal completely and so can you, no matter how far advanced your PD is! God bless you.

[lempa_nik in reply to Hidden]

Hi audreyjune22,

It's very hard for me to believe Walton-Hadlock's theory that the trauma from a foot injury--usually "long-forgotten" and in childhood--is what leads to Parkinson disease. I cannot at all remember such an injury in my case, and her hypothesis just sounds far-fetched. (Granted, if such an injury took place in my first 3-4 years of life, I could have forgotten it.) A human being typically undergoes a multitude of traumas, small and large, during their life, and stubbing ones toe or even breaking a leg does not stand out as especially noteworthy among all the different kinds of emotional or physical trauma that one can suffer. Besides, how does she accommodate well-known risk factors (brain trauma, toxin exposure, etc,) into her theory? May I ask what makes her theory credible to you?

[Hidden in reply to lempa_nik]

Hi Dumpelkin,

Thanks for the reply. Yes, I know it sounds far out. What makes her theory credible to me is that she and many of the PWP she worked with have totally recovered and their recoveries have been verified by neurologists. She points out that these foot injuries have been forgotten I believe in all cases. As you say, we certainly don't remember every single trauma we have had.

Janice's book is 422 pages with a lot of scientific explanation as she is a DAOM (doctor of oriental medicine). A lot of it she says herself is able to be skipped over without missing the basic message. Her own recovery and that of three others begin on about page 267 as I recall in case you want to just jump to that section.

Not until I found her research and Howard Shifke's website did I ever hear of anyone who totally recovered from PD except John Coleman. He also wrote a book about his journey which I have not read.

[C2R2yip in reply to Hidden]

Thanks kindly, you’re of great help. I’ll keep you posted of my journey through pd, if I may??

[Hidden in reply to C2R2yip]

Yes, C2R2yip, please do; we're all in this together - those with PD (PWP - people with Parkinson's) and their caregivers.

[Opt8]

The number one med my neurologist said is exercise. I'm one who never wanted to take meds; however, carbo/Levo with Azilect has kept me from falling. If I don' take those meds I was having increasing very sudden (like lightening fast feelings of falling. I tried acupressure, but d8d not help much. I think some may benefit tho from acupressure. I'm not a fan of break8ng bones. Since I take those meds have lost that feel8ng of falling. Still have stiffness. Had A variety of symptoms that C/l has helped given my life back. Not a cute all, but much better then I was. I take vitamins and drink coffee in mornings. Certain studies say they help. Doctors are continuing learning. There are classes for pd patients that do boxing with boxing bags. Somehow that has helped some. I believe in alternative to a point, but some seem more scarier then traditional meds. PD is very individual with our symptoms. It' of course what works best for us.

[laglag in reply to Opt8]

The boxing does help slow the progression. I've been doing Rock Steady Boxing for over 11 years and it has really helped me & I've see it help hundreds of PwP's. Most that go there at least maintain & some improve their symptoms.

[C2R2yip in reply to laglag]

May I know what’s rock steady boxing and is it available in Chengdu?

[laglag in reply to C2R2yip]

Here is the website for Rock Steady Boxing. rocksteadyboxing.org

You can read about it, read testimonials, watch videos, and there is also a tab to click on that will show you if there's an affliate near you.

[C2R2yip in reply to laglag]

Thanks kindly for your info

[lempa_nik in reply to Opt8]

Opt8, I drank caffeinated coffee for a while, until I noticed that it made the tremor, my main symptom, worse. Then I was further discouraged by the lack of symptomatic benefits shown by this much-publicized trial:

n.neurology.org/content/89/... .

There's this commentary on the preceding trial:

medscape.com/viewarticle/88...

Herein the the interesting question is raised as to why coffee drinking appears to be associated with a reduced risk of getting PD:

"Dr Postuma suggests that while this study seems to rule out caffeine as treatment for Parkinson's, it still might play a role in protecting against the condition,according to the epidemiologic data. Alternatively, though, low caffeine intake may just be a marker of the type of person who develops the condition.

"He explained that there appears to be something different about people destined to develop Parkinson's disease in terms of their reward mechanism. In addition to not drinking coffee or other caffeinated drinks, epidemiologic data show that patients with Parkinson's are less likely to smoke.

" 'The general profile of people who develop Parkinson's is responsible, hardworking, loyal, non-risk-taking, nonimpulsive — exactly the type of people who wouldn't be addicted to caffeine or smoking,' he said. 'We know the dopaminergic system is involved in the reward feeling when good things happen, and we know dopaminergic transmission is affected in Parkinson's disease. It may be that more impulsive people who probably have a greater reward reaction have a greater dopamine reserve.' "

I don't know about you all, but I find the above description of the classic "Parkinsonian personality" fascinating since it nails me to a T !

[C2R2yip in reply to lempa_nik]

It seems those who have PD aren’t the favourites of."...."

[lempa_nik in reply to C2R2yip]

Sorry. I'm not catching on. Were you replying to me? Can you clarify?

[C2R2yip in reply to lempa_nik]

We, pwp aren’t the lucky ones, we’re singled out for being too “good”.

[ddmagee1 in reply to Opt8]

If it helps you, more power to you, is a cliche of mine. Exercise and carbo/levo have benefitted me, so that I can at least function somewhat normally, much of the time. Of course, they are not cure-alls, and I don't expect that. I am a practical person, and, like you, take vitamins and drink coffee in the mornings. PD is individual, and each person is affected a bit differently, it seems. In the early stages, with me, medicine and exercise etc. were fairly effective. Some of the more advanced symptoms that I have now, like ones that affect the autonomic system, do not respond as well to medicine and exercise. I continually hope that scientists will come up with something, that will help PD sufferers. We must not get discouraged and lose hope! It is good that we can all have an opportunity to share our PD stories with this forum! I am not one to criticize another person's quest for hope, in relieving the challenges of living with any of the neuro-degenerative diseases, including PD, ALS, Alzheimer's, Lewy-Body dementia, MSA, Huntington's etc. I empathize with all who suffer from these neurologically challenging ailments.

[C2R2yip]

Thanks kindly for the info.

[maryalice]

1 have had PD for about 18 years now and have tried just about every natural treatment there is out there. I didn't want to take Sinemet, because of the side effects.

If I

[maryalice]

Sorry, I hit the send button by mistake.

The only thing that has worked for me is Mucana powder. I take it with other vitamins and amino acids. If you google Hinz Protocol there is a lot of information on the Web as well as on this Web site, Health Unlocked.

I wish that I had known about it when I was first diagnosed. It has given me back the ability to do things that I haven't been able to do in a long time. I will be happy to share my experience with you if you would like. Just let me know .

[C2R2yip in reply to maryalice]

Thanks kindly and I love to know more, please do share

[maryalice]

I left you a message on your profile page.