Has anyone heard of "Microdose Therapy", ... - Cure Parkinson's
Has anyone heard of "Microdose Therapy", by Dr. Stenberg of the Helen Foundation? It is too good to be true.
I've never heard of it before. It does sound too good to be true, but what if it really does work. I filled out the form to get more information. The people that are involved sound very reputable. I'm going to look into it. Thanks.
I wonder if this is similar to Homeopathy which I believe gives minute doses of medication to stimulate the body into repairing itself.
I dont know if I have quoted that correctly but I feel sure you know what I mean.
Some of the highest dilutions used in homeopathy mean that to be sure of getting just one molecule of reagent you would have to be swallowing a pill that is planet sized.
Never heard of it until your post. It appears to be low dose steroid treatment based on the assumption that Parkinsons is caused by inflamation. The same treatment is advised for a number of quite different diseases.
So you don't agree with it , or does it sound crazy to you?
Haha, i guess you could say Im very skeptical and its a steroid treatment, not a drug to play around with.
I found this article by a fibromyalgia society.
fmnetnews.com/coping-resour...
It ended with...., the cost is over $2,000 per month and there is no published evidence that low-dose hydrocortisone therapy works for relieving the symptoms of fibromyalgia.
Thats one point of view,!
I can't believe in homeopathy, but the theory about inflammation is interesting.
If it sounds too good to be true then to a high degree of probability it is exactly so..
Hi there , I am a research advocate with Parkinson's Disease Foundation and I also have PD. I have talked for hours with Virgil Stenberg about Microdose Therapy , it is very interesting, has had great results, costs less than 100 dollars a year after the initial investment of 7000 dollars which includes 7 weeks of intensive tests, therapy and education. If anyone is interested I can go through the details and even more, since I am now off all my Parkinson's meds and doing beautifully with little or no symptoms. I have'nt tried Microdose Therapy but I hope to visit the clinic and maybe start the therapy sometime next year. I am convinced there is a case to be made for Microdose Therapy and am in the process of bringing it to the attention of M.J. Fox PDF, PAN etc. I am amazed that you guy's are so quick to pick this up since most of this research flies under the radar, (no big drug company involved, no advertising budget etc) Let me know if you want futher information, I have a huge amount of research done on Alternative Therapies, therapies that make sense, therapies that are cheap and effective, I am living proof. Take care and keep up the good work.
You have PD and you are not on meds? Please advise on how you accomplished this. Yes, and also I like more information about the Microdose therapy. Why is it so expensive. Please let me know all alternative therapies that you know to work. So far I've tried, LDN (low dose naltrexone ) for about 5 months with no effect. Now I'm taking Zandopa as of 2days ago and feeling a little bit better. Still tryin to figure out the dosages and how to take it with other pd drugs. Next Tuesday I'm getting a TMJ appliance fitted to see if that also works. For your info. I've had PD for almost 5 years, since April 2008. Please let me know anything that you can do to get me off of azilect, sinemet, Requip xl.....thanks
Zandopa is made using Mucuna Puriens (Velvet Bean). this plant contains Leveodopa. It is therefore to be expected that you may feel a little bit better. I know I feel very much better when I take a Madopar tablet.
Hi pete my meds was changed a month ago from Stavilo to madapar125mg 4 times a day and 183mg of pramipexole with madapar I have weak legs and pain in my ankles and pins and needles inI my toes and it's takes another 30 mins after taking to kick in.my parkinson nurse is on annual leave to find if my meds needs change to higher strength have you had any symptoms like this
Thanks val
Hi pete my meds was changed a month ago from Stavilo to madapar125mg 4 times a day and 183mg of pramipexole with madapar I have weak legs and pain in my ankles and pins and needles inI my toes and it's takes another 30 mins after taking to kick in.my parkinson nurse is on annual leave to find if my meds needs change to higher strength have you had any symptoms like this
Thanks val
hello Anthony,
I don't think you mean 183mg of Pramipexole. I used to take abot 4mg per day but now use the prolonged release version. which seems to be okay. I take 125mg Madopar 4 times per day with an extra 62.5mg for the 3rd and 4th doses.
I can't say I have experienced the same symptoms and I find that I have to wait for 1 hour rather than 30 minute for the Madopar to take effect.
Some have said that if they eat anything with a large amount protein in it then a dose of Madopar does not take effect. I concur having something for breakfast recently and after 1.5 hours there was still no effect.
Why don't you take Stalevo any more I wonder?
Hi pete thanks for your reply I take a 1.57mg fro longed release and a 0.26 mg every 4 hours I take 125mg madapar and a slow release madapar at the symptoms I had with Stavilo aches I'm my legs and pins and needles and short of breath val
Hi pete thanks for your reply I take a 1.57mg fro longed release and a 0.26 mg every 4 hours I take 125mg madapar and a slow release madapar at the symptoms I had with Stavilo aches I'm my legs and pins and needles and short of breath val
If you are doing beautifully with little or no symptoms why are you planning to try Microdose Therapy sometime next year, isn't it somewhat superfluous?
Yes please regarding further info, especially any citations for proper research including such as double blind trials etc.
Dear annh,
I have P D and wondered if you had ever heard of concupiscence therapy as I am told it will relieve stress like the water of a flowing creek.. This therapy is commonly employed in W VA and provides much stimulation and pleasure.
YDLFTI
oh yes please send any info you can on reducing meds..ive had PD 24 yrs since i was 23 i currently take madopar and amantadine 3 times daily and have reduced my prescribe d dosage by 3 pills per day..a little scared to go any further though but any info will help immensly... and congrats for you being on no meds you are very lucky xxxx
First if all, that's wonderful and I am very happy for you. Yes, I am interested-- particularly in where to read legitimate information about it and where it is provided. Best of luck for continuing improvement and success
Hello finally a woman with PD I have just been diagnosed and am very concerned about treatment going forward. meds are tested on men and
I have read that women have trouble with them so I am interested in
Alternatives would you share your experience. Thank you
You said you are of all meds. what are you doing? I to called the Helen Foundation but unfortunately its too expense for me at this moment. I e-mailed MJ Fox but they don.t seem interested in looking at it. If I knew it worked for sure I would find the money. They sound very reputable to me. Please let me know what alternatives you are doing. I am beginningPD
Have you gone through the program yet? How did you come off your meds? I too have talked to the Helen Foundation and am considering it except the cost is going to be difficult for me. Thanks for any info. you can give me.
hi annh...how can I read more of your blog entries? Is there a location where I can follow you? Thanks!
What have you been doing to get off all meds?I would like more information on Microdose therapy.Would one have to travel to the US?
Ann how did you get to where you are with no symptoms? and what do you think about LDN?
I find this topic/treatment compelling because I have had doubts about my husband's diagnosis for years. All of his neurologists have expressed uncertainty about the PD diagnosis because husband has Non typical variety....no tremors. He takes Sinamet which gives terrible mouth/throat dyskenesia. I have done a lot of research and found little to help but when our 55 year old daughter was diagnosed 2 years ago with dermatomyositis (DM), a neuromuscular auto-immune disorder, I began to wonder if my husband had been misdiagnosed in the beginning. My daughter's treatment is currently prednisone which helps keep her mobile, etc. Now I see that someone else has thought about the neuromuscular inflammation and thinks that PD might be an autoimmune illness. This could be a game changer for us!
With regard to Microdose Therapy, however, I don't understand why it would cost $7,000. I might surmise that most "traditional" neurologists are hesitant to jump on board so there is a service gap for patients that Dr. Stenberg can fill. By the way, my daughter had MANY symptoms for years and was diagnosed with fibro, possible lupus, possible cancer, and other illness before she was CK tested. There is little understanding in the medical community, so Dr. Stenberg seems to be a trailblazer!
Hi again, let me answer Pete first. Yes, I am so lucky to be doing so well. However, just because I am doing well right now does'nt mean that this disease is'nt going to catch up with me again, so I cannot afford to stop my research. This process is on-going, both the disease and the struggle to find a way forward. I am frightened to stop and it is desperation that keep's me motivated. So far I have uncovered a wealth of information on ways to deal with PD, information that can help everybody and it is now my mission to pass this information on in the hope that I can help others. I am new to this blogging and will address Drevy next.
annh - Do you have your own blog ? If you do , I would be very interested in subscribing to it. I am same age as you are and have had PD for the past 6 years and also have similar symptoms. I have reached a point that I am willing to try alternative therapies as the meds have taken a toll on my body.
Hi Drevy, let me begin by saying you are already on the road to "recovery" Strange as it may seem I do believe that recovery is possible, I have seen it and spoken with PD patients who have recovered, even after 10 and 15 years since their diagnosis. LDN is a very well kept secret in the Parkinson's community, I am excited to find someone on this site who is on it. I will say , however that it can take time to "kick in". Some people feel the benefit after one month but the truth is most people can take up to a year to feel anything. It requires patience and the correct doseage...4.5mg or 5mg, taken at 10.00pm at night for optimum results. For those of you who would like to know more about LDN, I will be brief and outline the benefits.
1. LDN (Low Dose Naltrewxone) works as a symptom control when you first start taking it, and then after a couple of years it can actually start to reverse the PD symptoms.
2. It is well tolerated, has no side effects (low dose), and has been FDA approved for years as a therapy for heroin addicts (at a much higher dose).
3. It has an amazing effect on the immune system, which is very important in combating PD.
4. Concentration, focus and smoother movements, including walking and "grip" have been reported.
5. The cost for LDN is approx 35 dollars for 1 month's supply.
Microdose Therapy.
It is now widely aknowledged that inflamation in the brain is part of the PD experience. Most of you understand that we take the same medication for PD today as we did 50 years ago. In other words, we are still treating the symptoms and not the root cause, which is why the disease progresses and we keep "topping up" and adding to the medicine until we run out of options. Microdose therapy is a new concept, it addresses the inflamation, brings it under control and can improve and even reverse PD symptoms. Cortisone is the drug in question and while most of you understand that in it's infancy it was hailed as the drug of the century, it was found that in continuous treatment it has adverse effects, the opposite is also true..... Cortisone used in tablet form on an "as you need it" basis, rather than a continuous dose works much the same as insulin does for diabetes. The patient must be taught how and when to take the cortisone, this is the key to the treatment. When patients are taught to take cortisone only on the bad days and not on the good ones, they use so little that there are no side effects, and as cortisone is a hormone in your body, you are restoring the balance ..
If you have anymore questions on Microdose Therapy let me know and I will be happy to address them.
If anybody is interested I have lots of information on the use of vitamin and minerals and the importance of having your blood checked twice a year to maintain a balanced system.
Also, since we just talked about inflamation in the brain, it's a topic that needs open discussion, we need to learn how to treat this inflamation and we need to bring it to the attention of our neurologists, we need to ask questions, we need to think "outside the box", there are ways to treat this inflamation, it does'nt cost much , but the neurologists are taught to track our progression, and according to where we fit, we receive the same medicine, it's a one size fit's all, give or take ! There are way's to deal with the progression and symptoms without having to poison ourselves with the PD drugs.
Since brain inflamation is itself a symptom of disease and that disease itself is some kind of infectious agent. In the case of Pakrinson;s disease, what infectious agent is involved or will any one have the same effect.
I don't understand why you seem to elevate Cortisone in relation to PD as it is a hormone secreted by the Adrenal gland along with Adrenalin as a response to a high stress situation, i.e. it is involved with the body's natural fight or flight response to said stress.
So, iust to confirm what you mean, is the chemical reagent "Cortisone" the drug used in the Microdose Therapy or is there more added into the mix?
How do you possibly get off these meds without getting a withdrawal side effects. I'm trying to use the Zandopa but I'm not having good results as I thought. It works quickly but last only about 2 hrs and when I'm in the meds off mode , I can blearily walk. Will I hurt myself by taking changing dosages of meds. Could you recommend anything you did to get off the poison , what did you do and supplements you take.
Hi Pete, in response lets see if I can make sense....The root cause of PD involves much more than an infectious agent, it encompasses a number of conditions and pre-dispositions, all waiting for the set of triggers to be set off. I did'nt set out to elevate Cortisone, I am just responding to the question on Microdose Therapy, which I happened to have investigated. The reason I am intrigued about Microdose Therapy is because it simply makes sense, and I honestly believe that if it makes sense, then , why should'nt it work ? The research also supports this otherwise I would'nt waste your time'
To better understand , let me explain in this way......The endocrine system controls inflamation in the body. Cortisone is produced by the endocrine system. When the body is stressed, by infection, trauma, injury or allergies , it causes inflamation. The body responds by producing Cortisone to combat the inflamation. As the inflamation receeds , an extra surge, or pulse of Cortisone is produced to terminate the inflamation.
When you have PD, the inflamation is on-going, since we treat the symptoms and not the cause. The price we pay is that over time , as the inflamation is out of control because the natural Cortisone in our body is unable to keep pace, it diminishes as time progresses and we loose the ability to pulse the Cortisone and therefore terminate the inflamation.
Cortisone supplementation ,or Microdose Therapy strengthens the natural cortisone pulse.
The reason I like the idea of Microdose Therapy is because you are replacing a natural hormone, one that plays a vital role in your body. This is cheap, FDA approved, is showing promising results and might one day bew the answer to my prayers.
Just to let you know..... Though I am a Research Advocate for Parkinson's Disease Foundation. my position is a volunteer one, They trained me in the Clinical Trial and Research Process. I have no agenda other than the wish to help my fellow Parkinson's Sufferers. I also have no medical back ground, but my skin is so heavily invested in this project, I have had to educate myself and out of desperation is born the belief that I can share my research and help others. So in the spirit of "all that is good" let me say that I am happy to have found this site. I sincerely hope that I can be a helpful addition to the "party" and that you guys will tolerate me and my ideas.
Thanks, Ann.
Well thank you for your extensive reply, it does indeed sound interesting. There is much detail missing though, especially regarding this inflamation. Any such effect in the brain would be immediately obvious to any medics involved in surgery for example and outside of this discussion such a term is never mentioned. So one would want to know how extensive is the inflamation and what is the primary cause for that inflamationn etc. etc.
I also would like to know if the inflamation is the cause of Parkinson and inflamation of what or where.
My neurologist explained to me that I don't received dopamine in of because the neurotrasmisors "Does not working correctly" and the medicines help but no cure, there is not cure for the parkinson.
Medicines and exercise and a possible surgery. Thank you very much and I hope you can understand because my English is very little.
Is low dose Naltrexone therapy the same as Microdose Therapy? If our Neurologists don't endorse the approach how do we find a provider that will?
Hi Ann
I appreciate your posting and at such length, but I still feel there are lots of unanswered questions. I dont know how long you have had Parkinsons and when you started and stopped treatment and what treatment you had. Are you able to give more background?
Like Pete I am also interested in the actual research you base your statements on as I see you are a research advocate with PDF .
Thank you for your interest.
Hi Pete,
If you would like some background information, here goes....... I was 55 two weeks ago, was diagnosed at age 50, having suffered symptoms for about 4 years prior to my diagnosis. I lost my sense of smell completly about 10 years ago, but never realized the connection. My main issue was stiffness on my right side. My arm didn't swing when I walked, my neck and back were stiff, also my joints, wrist, elbow and fingers ached. I was been treated for "frozen shoulder" for a year and endured all kinds of therapy, muscle and nerve based. Finally, I changed doctors and the "penny dropped" , he immediatly thought it was PD and made an appointment with a Movement Disorder Specialist" who confirmed the diagnosis. To make a long story short, I buried my head in the sand, couldn't believe it and went to the Cleveland Clinic for a full investigation, guess what? same diagnosis!! Next I found a Movement Disorder Specialist in Louiville recommended by the Cleveland Clinic and he began my treatment. The treatment is standard ,as I pointed out and to be honest I was just too scared to do anything except accept the standard treatment. Started off on Azilect and Pramipexole (Mirapex), moving the dose up on Mirapex until I was maxed out. Next step on the highway was Levadopa, but I was reluctant to start Levadopa, but I am getting ahead of myself......While on Azilect and Mirapex, the symptoms improved slightly, but as the disease progressed I had to increase the medication. While on the medication, I did find my focus , concentration and energy declined, but looking back I know I thought it was the progression of PD and not the meds that caused this. During this time I also suffered from tummy cramps,especially in the morning, also diahrrea, and I lost a total of 54 lbs. I was just skin and bones!!
By some stroke of fortune ,I was selected by Parkinson'd Disease Foundation to join a Research Panel, called PAIR (Parkinson's Advocates In Research) and they educated me in all aspects of Research and the Clinical Trial process This pretty much changed my life! I now was ready to ask questions, search for answers and finally realize that for me, the answer is to take responsibility for my PD by researching the disease and finding a different option if possible. The meds are so toxic and I was horrified that no doctor or neurologist felt obliged to tell me exactly what the outcome would be. Please remember, this is my story and I am not in anyway asking anybody with PD to make changes in their lives . This is my story and I am sharing with you in the hope that you will be enlightened and know there is hope and we can share information, but ultimatley I am just the "messanger"
I never started Levadopa, though my neurologist spent a year telling me I needed it. I was more concerned about the effects on my system from the meds I was already on.
Slowly, on my own (not recommended) I came off Mirappex and Azilect, it took me 10 weeks During this time I added supplements and vitamins to keep me balanced and I survived.....
Next I did a chelation using supplements for 30 days, having read about Heavy Metals and Toxic Chemicals, another v important issue for PD.
Next I started LDN and this is where it gets interesting.......2 weeks into LDN I get my smell back!!!!! Can you believe that? Now I am so excited, I believe I am getting somewhere!!!!!
LDN gives me back my focus, concentration, smoother movements, and joy..... everything that I had lost. It does take time to "kick in" some people take longer than others
I have added supplements and minerals , all of which I can address in another blog, since the informatin is extensive
I have many tips on "daily living" things to do and things to avoid which I can also pass on
Also, very importantly, I am a great believer in "Detoxification"
This is a major subject for PD, since we loose the ability to detox the brain when we have PD , I don't know if you know that pretty much everybody with PD carries an over-load of heavy metals and toxic chemicals which we are unable to rid ourselves off. This also leads to the dreaded inflamation in the brain I talked about earlier.
Anyway, enough for now, have to go.
Let me know how I am doing. If I am boring or just too long winded I will gracefully retire. By the way, I am Irish and moved here 10 years ago with my husband and 3 kids.
Thanks for listening,
Ann.
Ann,
Please advise on how you were able to get off the meds. What supplements you took and etc. I'm thinking about doing the Microdose therapy. Re started taken the LDN per your advise. I want to thank you all your time and effort in answering everyone's question. You have been a blessing. We be waiting for your reply. Again thanks.
Ann,
Thank you once again for your extensive reply. May I suggest that all you have written so far should be saved in a Word document or some such to save having to re-write it in answer to other questioners perhaps on any alternative forum. I see it is possible to copy / paste text from posts herein.
It is also unfortunate that results from taking LDN are so variable in terms of time to bear fruit. The cases mentioned earlier were (if I remember correctly) your own at two months and someone else at about a year. Is there some average figure that falls well short of the longest. There is no way I am going to take medication of any sort if I have to wait for many months before finding any benefit. Especially if I have to bear the cost privately and when there is no widespread confidence in its efficacy.
Ann, I forgot to ask what is "chelation"? Thanks.
Believe me Pete, if there was one medication I was allowed for PD, without a doubt its LDN. Don't know the intricaties of how it works, I just know that it does.....and when it "kicks in" you will feel the ongoing benefit year after year. Thats the strange thing, you continue to do well and it seem's to hold off the PD. I cannot explain why some people react sooner than others, but hey....none of us react to PD in the same way! Please consider giving it a try.
Ann,
I just saw this article online that talks about a new class of drug that deals with inflammation to the brain. So it makes a lot of sense that the Microdose therapy may actually work. Here's the article.
MD News - New Medication Promising for Alzheimer’s, Parkinson’s and Multiple Sclerosis
mdnews.com/news/2012_11/new....
Let me know what you think.
Hi like you i am new to this,i have been taking vitamins on and off for years, so could we share in your secret as to what supplements and minerals you were taking so that we can see if it works for us too BARBIE 18
Hi Annh. Thank you for your extensive replies. I am interested what you have heard about the effects of coconut oil (CO) on PD.
I have personally experienced a major improvement to my own symptoms that were noticeable from the first day that I consumed two tablespoons in a breakfast shake. I am a 65 year old woman, diagnosed 13 years ago. I started taking two tablespoons of CO daily in a breakfast shake five months ago. Friends and family began to remark about the visible changes within days. Since starting CO, I can walk faster, speak louder, stand straighter, button my own buttons, tie my shoelaces, cut my meat, brush my teeth without an electric toothbrush, and style my own hair. I have much more energy than before coconut oil and I haven't taken a single nap since I started on CO. Previously, napping was required to get through the day, I wasn't sure if my body was continuing to heal or not, but recently I've noticed sometimes that my left arm is hanging at my side with a small spontaneous swing. Normally, my left arm is pulled up against my chest with my thumb and index finger touching. Swinging my left arm intentionally used to be impossible. I could only take a few steps with my arm swinging before I would lose the ability to synchronize a simple movement that non-PD people never have to think about. What is the PD Research community saying about Coconut oil?
In cost comparison to some of the other treatments talked about, CO is a real bargain with no real side effects other than some people report weight gain, and some people experience some upset stomach or diarrhea when first starting on CO.
Hi Annh
I've had PD 5 yrs , i do alternative therapy of different sorts and would be very interested in your daily routine and a little info on the therapies.
I lost my sense of smell years before diagnosis and would try anything to be able for the ability to smell my grand babies .
Any suggestions could be sent to
Golfnut215@gmail.com
Thank you
Hi Pappy, No personal experience on the matter, but if you search for and review Annh's post under "Microdose Therapy" from 2 years prior (almost halfway down the page), you will find her crediting 'LDN' for restoring her sense of smell after 10 years of living without it. If loss of smell were currently a problem for me, I find her experience credible enough, and LDN apparently benign enough, to give it a try - especially if it enhances your experience with the grandkids 
Thanks Ann
So it sounds like you are stiffness dominant rather than tremor and you stopped meds a few months ago. It is good to read how well you feel.
Ann,
You are an answer to my prayers. Please continue to share your knowledge. Finally someone to answer some questions about alternative treatment with positive feedback. I'm so excited! Thank you. Blessings. I've got to get my questions together.
MaryAlice
Hi Guys, I have been busy over the holidays dealing with PD patients and much to my amazement, I have met with some readers of this "Blog" I answered Drevy with regard to supplements , vitamins etc on a different "page" , also on the Parkinson's Movement site. Now , however, I would like to address Pete.
Inflamation....has widely been recognized as a contributing factor to PD. You can research this anywhere, here are a few examples....Aug 18 2003 Article by Daniel DeNoon WebMD Medical News, April 01, 2006 Study says Anti-Inflamatories Can Ward Off PD, Harvard School Of Public Health. Also , if you feel inclined, read the Chen Study, Honglei Chen, MD, phD, of the Harvard School of Public Health. There are many, many more examples, but it is without doubt a fact that inflamation is a very serious contributing factor to PD.
Next question you ask related to medics. Unless you have brain surgery the only evidence of inflamation is when an autopsy is performed.
Last question you asked is a really good one...... The cause of inflamation.
Trauma, Stress, Infection, Injury, Allergies. Anyone of these will start the inflamation process, then fluids seep into the effected areas, causing redness and swelling. This attracts immune cells that set off chemical signals. Alzheimers and Lou Gehrig's disease also involve brain inflamation in much the same way as PD.
Ann, you are 4 years post diagnosis now and not on conventional meds, as everyones symptoms vary i wonder do you know people more years post diagnosis also not on conventional meds? I don't know anyone long term PD not on some form of dopamine treatment.
I'm a big advocate for investigation, exploration, therapies that support and complement one another and so forth. Frankly, I'm the biggest hippie on the planet so a non-pharma answer would thrill me. BUT...I'm also not willing to discount the science.
According to Steven Novella:
"...A search of PubMed for “low-dose naltrexone” reveals only pilot and preliminary studies. The quick bottom line is that there does not appear to be a single medical application of LDN (outside of addiction) that is supported by a class I clinical trial, let alone a consensus of rigorous studies..."
Dr. Novella is an academic clinical neurologist at Yale University School of Medicine. He is the president and co-founder of the New England Skeptical Society. He is the host and producer of the popular weekly science podcast, The Skeptics’ Guide to the Universe. He is also a senior fellow and Director of Science-Based Medicine at the James Randi Educational Foundation (JREF), a fellow of the Committee for Skeptical Inquiry (CSI) and a founding fellow of the Institute for Science in Medicine.
Link to article quoted above:
sciencebasedmedicine.org/in...
Thanks for this Kathlene
Well this is interesting, you've got my attention now - I can sort of make sense of what Ann is saying - and stress - the silent killer. I'm going to track down someone here in NZ to see (whats involved) if I start Chelation and the LDN programme. Keep up the good work - If what Ann is saying is correct and is living proof that it works then this approach doesn't seem to have to much risk - worth a try
Ann,
I've had PD for about 14 tears. Do you think it's too late for me to try LDN. I have never been on Sinemet. I'm taking Mirapex and Amanadine. Thanks for your help?
oh yes please send any info you can on reducing meds..ive had PD 24 yrs since i was 23 i currently take madopar and amantadine 3 times daily and have reduced my prescribe d dosage by 3 pills per day..a little scared to go any further though but any info will help immensly... and congrats for you being on no meds you are very lucky xxxx
Ann:
Thank you for your courage and generosity of sharing. Please hang in there and continue to hold your lantern in the darkness. This information is fascinating, and because it is not mainstream, not widely known. What I like most about this site is its just us talking to each other about what we are experiencing. Thank you...
I agree with Jash. It *is* cool that we can talk to one another about our experiences. I'm a huge proponent of complementary and alternative therapies to both help mitigate the symptoms of PD and to help soothe the side effects of our medications and stressors. As a former massage therapist and aromatherapist who also taught Anatomy & Physiology and Kinesiology at the college level, I feel like I've been given offered the chance to have perspective from both sides of the fence...allopathic and holistic. It allows me the chance to show nay-sayers and detractors the science behind complementary alternatives and prove that they work using those mainstream standards. There is no reason that non-allopathic medicine (whether it be naturopathic, homeopathic, energetic, supplements, aromatherapy, bodywork, movement therapy, etc) cant stand up to the rigors of science. To say that it cannot, or to not demand that it does so, is to give the nay-sayers an additional weapon against its use. I'm not willing to limit myself to allopathic medicine. I'm also not willing to ask a neurologist to speak intelligently about a subject in which s/he is not qualified. How can they do the job we ask/expect them to do if they aren't informed? If we present scientific literature, they have more with which to work. I don't expect them to know everything, but when I'm planning on asking them about a complementary therapy (or telling them about the ones I've already chosen) I'm going to present them with the body of research I've done on my own so that they know I'm invested in my treatment AND that I'm willing to be proactive about my quality of life. Also, if I'm trying things that might interfere with the treatment(s) we've already agreed upon, I want to know that. By presenting an allopathic medical professional with research written in their own language, I get faster results than if I approach them unprepared and unable to back up my ideas. We've all known a medical care provider that disregarded the ideas/feelings/thoughts of his/her patients. Why would I want to provide them with ammunition? (laughing) When I meet them on their own playing field, I get a more interesting and involved dialogue AND a health care provider who then has a new idea to add to the arsenal of things they can provide others.
It's a hell of a game, ain't it?! : )
Today's reading: ncbi.nlm.nih.gov/pmc/articl...
PubMed Article from November 2011 offering science based proof that accupuncture improves motor function (study conducted by the National Research Foundation of Korea).
The article was also published by PLOS ONE which is an international, peer-reviewed, open-access (meaning anyone can have access, as opposed to PubMed which requires membership or scientific/academic affiliation) information disseminator which reports on primary research from any scientific discipline. PLOS ONE features reports of original research from ALL disciplines within science and medicine. ***By not excluding papers on the basis of subject area, PLOS ONE facilitates the discovery of the connections between ideas and research whether within or between disciplines.***
Hello, I wish to convey to you fellow sufferers about my experiences with Microdose Therapy from the Helens Foundation that claims to reduce pain for RA, CFS, Fibro back pain, migraines and even Parkinson’s by using Hydrocortisone (Cortisol). You name the illness…they claim to “reduce it or eliminate it.” Against the wishes from my RA & PC docs, who thought it was one of many ways to take advantage of chronic pain sufferers, I bit the hook of the promises to “arrest Fibromyalgia in 21 days” with a program where “patients averaged 77% relief.” Desperate people in pain tend to do desperate things. Of course the people over the phone were very nice. They were also very happy to “get my check” of $7495.00 rather than my medical information.
During the “Shower” dose, of 100 mgs of Hydrocortisone (Cortisol), I experienced adverse reactions such as swelling/feeling of fullness of the face, jaw, neck and armpits. I also had a sore throat & minor chest pain. The head face & jaw pain was elevated above the usual level which made it unbearable to be around anyone or do anything. What really concerned me the most was an overwhelming, dark crushing depression and an extreme level of fatigue to the point that I could barely get out of bed. I haven’t experienced anything like that before. I barely had the strength do complete basis daily activities and take care of my mom. These reactions were far worse than I experienced with Prednisone. I was told Hydrocortisone was a more “natural” drug than Prednisone but my body could not tolerate it and the side effects were unbearable even when I tapered the dosage down 20mgs. So I discontinued the drug and went back on the Prednisone at a lower dosage (1/2 of 5mg). I should have listened to my doctors who discouraged me from entering the program. The docs told me that Hydrocortisone is really NO different from taking Prednisone. They are both Corticosteroids but Hydrocortisone has lower dosing levels than Prednisone. However, Prednisone is longer acting.
In essence, it was a very expensive lesson for me to which the program cost me out of pocket $5545.00 out of $7495.00. I paid $900 for Food Allergy Testing through the program which came from a Lab that mainly tests horses, dogs and cats. You can find a similar test for $400-500. I also had to pay $995 for a digital tracking system (a computer graphing program) that charted my daily fluctuating symptoms from 4 pages of pain diaries as “improvements” rather than recoveries from flare-ups due to activities, storms & recovering from overdosing of Hydrocortisone. So there is how they get the “percentage of improvements” they claim to make. I didn’t take a statistics class but I know there are false positive errors which factors can be misinterpreted. I lost a lot of money and I regret entering the program. So be warned! You are either a predator or you are prey! I was a fool! Hydrocortisone (pill cortisol) in lower doses may work for you but please be very cautious about this program! You don’t need to spend $7495. Just ask your doc to give it a try if you have problems with the Prednisone. Each Hydrocortisone tablet is 20mgs which is said to equal 20 mgs of Prednisone. In the Shower/loading stage, I started with 5 tablets (100mgs) for a week which caused me to flare up. I tapered to 3 tbs(60mgs) week 2; 1 ½ tbs (30mgs) for a week. I had to taper down early then stop the medication per doctor’s orders. Eventually, you may find a minimal dose that will help reduce your pain and remain on it for the rest of your life. I hope this helps others from being preyed upon. Take care.
I just discovered Microdose Therapy online while searching for alternative therapies for Parkinson's and MS. Dr. Sternberg seems very accredited and was moved by compassion for his wife's suffering as well as his own scientifically curious mind to find a way to end the suffering of crippling disease. Here's the website so you can peruse and form your own opinions- helenfoundation.com
Hi. I wish to relay what a fellow sufferer wrote to me on another health site about the Helen Foundation which should give you something to think about! Again, I learned the hard way that you don't believe all you hear or read especially on the internet and the testimonials which they control. Have you ever read a testimonial from any program or supplement or from a treatment that was negative? Yes, yes, how romantic it is to read about the "love story" but I laid down all the money and went through the initial program. Did you? I experienced first hand that the only thing Dr. Stenberg cares about is your money. The only thing they are concerned about is the total numbers from your pain diaries so he can play around by graphing them on a scale in color. I was sent to a neighborhood doctor in a low middle income area. There really wasn't much of a examine nor physician supervision. You and the program got lost in a doctor who was overwhelmed with his own patients. I took a blood test that was sent to a company that mainly tests dogs, cats & horses. I didn't receive a response from the company if they also test humans for allergy. The only time I had any communication with Dr. Stenberg was in an email after I stopped the drug and withdrew from the program due to adverse side effects. He wrote me, wanting me to ignore the advice of my docs who told me to stop taking the drug. Afterall, there was still $1950.00 he could make off me if I continued with the program into the next phase. Then he wrote me a very sarcastic letter claiming that he is satisfied with what he believes are "improvements" in my pain through his program but these "improvements" came after I stopped the drug! My body was trying to settle down to my "normal range" of pain from the overdose & the flareups that came with using the drug. Dr. Stenberg is a very arrogant man. Have you had communications directly from him yourself? I have. Believe me when I tell you he didn't care one bit about my increased pain or the side effects I was experiencing! My docs were very upset with me for trying this program which they believe is a scam that preys on people in chronic pain/illness. The program was nothing like I expected. If Mrs. Stenberg truly had "Rheumatoid Arthritis" according to their website then she would also be on biologics since steroid relief lasts only a short time! My mom has horrible RA throughout her whole body and the medications they have come out with has not stopped the progression. It doesn't matter if you have RA, Fibro, PD, CFS... Think what you may. I just want to warn other sufferers that this program is a scam! Forget the "love story" crap! Afterall, it is a business and money is the name of the game!
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Forwarded from a sufferer on another website from tig159:
I'm truly sorry you have lost money on a predator. For all those looking for the miracle cure- please, please, do your research. Use this board, talk to multiple doctors, etc. Also, having to sign a contract that does not allow you to cancel treatment with no loss of additional $$ for items not used or received is a serious red flag as well. I went to their web site... I'm ALWAYS skeptical of "testimonials" especially those without names - and if there was lack of physicians. In this case they actually claim to have physicians on board- most don't exist, but even the First one on the list:
Disciplinary action in another state (7/2/2004)
Action Taken: Revocation
Allegation of Complaint: Dr. Michael Jon Kell, Lic #0000-35005
NATURE OF COMPLAINT
Dr. Kell was convicted in Georgia of one count of felony Conspiracy to Defraud the State, one count of felony Medicaid Fraud, one count of felony False Writings, and three counts of felony Tax Evasion..
ACTION TAKEN
Dr. Kell’s license is Revoked.
State: North Carolina
Unknown (3/2/2001)
Action Taken: Surrender
Allegation of Complaint: Dr. Michael Jon Kell, Lic #029011, Docket #2001-0025
NATURE OF COMPLAINT
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I recently received some feedback that there is a consumer alert about Microdose Therapy on fmnetnews.com/ a website for people living with Fibromyalgia. I want to give people a heads up on this program regardless if you have PM, Fibro, RA, Arthritis, CFD, back pain, MS...because this site is preying on people with many diseases/disorders! I didn’t see many independent patient reviews outside of their website. I have seen some of their solicitation replies to people posting their symptoms on message boards so be aware. There is a predator preying on people in pain! I lost a lot of money and I now regret entering the program. So be warned! In a final letter Dr. Stenberg wrote to me: “Which are we to believe: Ms G’s diary numbers or her words?” So there you go. This shows the true nature of a predator/doctor and that he is only concerned with numbers from your pain diaries neither your symptoms nor your reactions to the drug. I also received feedback that Dr. Michael Jon Kell medical license was revoked and that he was convicted in Georgia of one count of felony Conspiracy to Defraud the State, one count of felony Medicaid Fraud, one count of felony False Writings, and three counts of felony Tax Evasion. Dr. Michael Jon Kell endorses Dr. Stenberg’s program on the Foundation’s website! So beware! Birds of a Feather Flock Together! I hope this helps prevent others from being preyed upon. When one is in pain, has a chronic disease or a disorder, one tends to try everything and anything. I did file a complaint with the BBB and I will be pursuing other avenues on this matter including a complaint to the Medical Board in AZ. Take care. DG.
Again, I would like to warn everyone who might consider trying Microdosing Therapy through the Helen's Foundation for Fibro, Parkinson's, Arthritis, RA, OS, CFS, Multiple Sclerosis and other chronic conditions he is targeting on his website & at his "clinic." Virgil Stenberg is NOT a medical doctor who can diagnose, give advice, treat or administer medications to patients. He was a university chemistry & mathematics professor and unfortunately, anyone with a PH.D. can refer to themselves as a "DR."
Stenberg uses his honorary title "Dr" title to misrepresent himself as a doctor to prey on the chronically ill community. His primary target are those who suffer from years of chronic pain & conditions--people who are so desperate they are willing to try anything and are willing to part with $7000+ for their own hard earned savings.
He has a smooth talking staff who will promise you that you will be pain free in a matter of months and that you can return to the activities you had to give up. During your consolation call Ernesto, the VP, reads from a binder of papers a speech all typed out by Stenberg which takes about 45 minutes. There were a number of times Ernesto got lost in his prepared speech when I asked a few questions. He just reads on & on. The questions I asked were really not answered. tTe reason Stenberg can get away with his fraud is because he will send you to a doctor in your area who took one of Stenberg's classes and this doctor can make $250 from your visit. Just a few questions are asked and you are out the door with a scrip for Hydrocortisone which cost me $5.00 at the pharmacy.
You start on a large loading dose of a number of 20 MG tablets: 5 tbs for 7 days then 3 tbs for 7 days finally 1 1/2 tbs for 7 days. Meanwhile you have to fill out many diaries that chart your levels of pain & call in, email or FAX the numbers in. That is all they care about is the "total numbers." From there you are able to find the dose you are comfortable with to take daily. You can do this with you doctor without spending over $7000.00. It really is not different that Prednisone. The Hydrocortisone tablets are just in small doses of 5, 10 & 20 mgs so you can find a lower maintenance dose than 5 mgs of Prednisone. Steroid Equivalence Converter shows Prednisone 10mgs = Hydrocortisone 40 mg; 5 mgs Pred = 20 mgs Hydro. Prednisone is 4 to 5 times more potent than hydrocortisone and has a longer duration of action, perhaps 12 hours or more. Now, in the beginning, you may feel good but that good feeling will wear off in a month or two. So you may think, "Hey, this is working" but anyone on steroids will tell you the same thing but the good feeling does end and you have to keep upping the dose.
Again, you can ask your doctor about it. Please STAY AWAY FROM THE HELEN'S FOUNDATION. THEY JUST WANT & LIVE OFF YOUR MONEY AND PRODUCE VERY LITTLE TO NO TRUE RESULTS. IT CAN EVEN MAKE YOU SICK LIKE IT DID FOR ME & OTHERS.
If Stenberg's wife, Helen, really had true Rheumatoid Arthritis than Microdosing really won't help her. Everyone in my family has severe RA. Don't forget, there are a lot of husband/wife scam artists out there who will promise you the world but what they really want is your money. They may sound like they care over the phone. They have cooked a wonderful love story about saving Helen but it is all part of a scam. I know how desperate one can be in 24/7 pain. I've been there for nearly 15 yrs. Just find a good specialist and ask them. Listen to them. Ernesto refused to tell me which doctor I will be seeing locally until I signed the contract & they cashed my check for over $7400.00. They were so happy to get "the check" but really didn't care about my medical situation.
Now when one is in severe pain, one is not thinking clearly. So you don't look into such details as I am now. All you want to do is to lessen the pain that is causing you great suffering and you don't care how you do it. That IS WHY IT IS SO EASY TO TAKE ADVANTAGE OF VULNERABLE PEOPLE and this is the reason why more people you have victimized don't come forward to report it. For one, you don't know who to contact. As I said there are basically no resources to report these crimes or for anyone to investigate these cases. Forget the BBB. Been there, done that. Nothing resolved. The number of complaints have been altered & the customer reviews have been erased. So that is why Stenberg can claim he has a A rating. That is why there are postings on sites like this one and ripoffreport.com & others. People are starting to come out and post their experiences. On top of that I was so disgusted with myself and with you that I just wanted to give up but I decided to do what I can TO WARN OTHERS who is in the same boat as I am.
There are many predators operating in the world--some target young boys or girls, some target the teens, others new college students--all are unaware of the need or how to protect oneself. Predators also target seniors, the elderly, people with special needs and of course the sick. This is why I posted this information. It's sad but this is how some people make money. It's all about the money! Please take care.
I just recently started the trial period for chronic fatigue. The therapy shows positive results across several dieseases. I have tried everything to combat fatigue and brain fog, chronic Joint pain, etc for over a year. I have seen positive results in just less than a week with no side effects. It seems to me that a cortisol deficiency could be similar to testosterone levels dropping with age. I'm optimistic and has seen higher success rates than drugs like lyrica with fewer risks. My biggest concern is potential loss of bone density with prolonged use; however the methodology behind it suggests once levels are restored, maintenance doses are smaller and would have little side effect. I hope that helps. I was at my witt's end and was still skeptical but slowly becoming a believer.
Hi Jkppd, I am glad that you have found a therapy/med that is helping you with your condition. I am not sure if you are referring to the Microdosing Therapy administered from the Helen Foundation. You can ask your doctor for the same medication/therapy without doing a stupid thing like I did and pay several thousand dollars. While you are on Lyrica ask your doc for a bone density test just to get a baseline. Then repeat it a year later to see if you have any bone loss. Hang in there. It's tough when you take medications that alter your brain chemistry.
Please don't do what my neighbor did. She went on a cruise and forgot to take her Lyrica with her. She became very sick and had to be hospitalized. The problem was she stopped taking it. You must, must, must slowly taper down if you want to get off this drug, Cymbalta or others. It is hard and it takes a long time. The side effects for stopping it are tough to go through. If the drug works for you stay on it consistently.
The drug information may say this or that about side effects but don't let that scare you unless you start to experience some tough side effects. There is a website/message board if you need to stop after taking it a long time. It's good to validate what you are going through during the tapering down process or are on a loading dose. A loading dose period can be rough. Ask your doc to drop it a bit if you have side effects you can't tolerate. Do know that the initial side effects will taper off as you continue to take the drug.
Good luck & take care, DG
I personally have gone through the program just recently. I don't have PD but rather Fibromyalgia. My results have been amazing. I don't wake up and need to take a narcotic pain medication anymore. I have more energy. I no longer have joint pain and have actually lost weight (I was about 40 lbs over weight) because I can exercise again. I am grateful everyday that I started it. I am happier and I have more energy. It has changed my life in so many ways and I encourage anyone and everyone to at least have a conversation. If it isn't for you no big deal but I went from having so much painto now taking an occasional tylenol when I need it.
Don’t be his Next VICTIM!
Hi Everyone. I wish to convey some thoughts about Stenberg’s posting. I was in his Microdosing Therapy program & ended up very sick. Points for you to consider: Hydrocortisone oral is a corticosteroid that must be supervised by a real doctor & with labs. HC has MANY side effects & some can be very serious. Check our mayoclinic.org for a large list. As you can tell by his comments about HC Stenberg is NOT a medical doctor. He is a college professor in chemistry & math. That is why he is using PDR material and he is telling you information that really doesn’t make sense for someone in pain.
Hydrocortisone & other corticosteroids can mask signs of infection & impair the body's natural immune response to infection, making patients more susceptible to infections. Chickenpox, measles & viruses can produce serious & fatal illnesses in patients on hydrocortisone. I have been positive for the Epstein Barr virus for many years yet no one asked me. Hydrocortisone can reactivate dormant infections in these patients & cause serious illness. Prolonged use of hydrocortisone can depress the ability of body's adrenal glands to produce corticosteroids. Hydrocortisone impairs calcium absorption & new bone formation. Patients on prolonged treatment with hydrocortisone can develop osteoporosis and an increased risk of bone fractures-- medicinenet.com/hydrocortis....
One of the side effects of taking any oral corticosteroid even HC is “Steroid Euphoria”--having a sense of wellbeing that can be confused with improvements in physical health. I experienced this. It was even stronger after a cup of coffee. I do believe that many of the 2,020 people Stenberg is boasting about possibly have experienced this high & believed their condition/s were improving. Stenberg’s program lasts only several months—just as long for the high to fade! If you are not responding as he intended you go through another “shower” dose which is a high dose to get you high again.
It is also interesting that you can’t see his actual study or the fine details of the study. It is interesting that well known Pain, Arthritis & Fibromyalgia well known organizations & foundations do not have information on Hydrocortisone therapy as an effective treatment. In fact, there is a Consumer Alert on Low or Micro Dose Hydrocortisone Therapy based on 2 trials--fmnetnews.com. “There is no published evidence that low dose hydrocortisone therapy works for relieving the symptoms of fibromyalgia.” I was given some strong advice from the FibroAction Administrator: “I also wanted to say how sorry I am to read you've paid out this money in good faith being led to believe these treatments will significantly help your medical conditions. Unfortunately, there are sites around the internet claiming their products will solve Fibromyalgia symptoms however there is currently no cure for Fibro. I find it awful that vulnerable people are given this false hope, only to find that they do not help usually after a considerable amount of money has changed hands. My only advice to others would be to always do your research, contact Fibro charities, speak to your Healthcare Professionals & search the internet thoroughly before paying for any of these treatments. Thank you for your post which may help many others” fmauk.org.
So as you can see there are many RED FLAGS in Virgil Stenberg’s Microdosing Therapy! He can claim he “created the 10 point pain scale” which cannot be verified or that he “discovered the inflammation control system.” I’m sure they knew about that too before. You can claim anything you want. It’s funny that you do not see his name in any paper or article outside his website. Nothing! My advice is to work closely with your specialist. Research programs & treatments. Please don’t do the stupid thing I did when I was in so much pain & very desperate to try anything to find relief. I threw away $7,495 to this fool.
Stenberg is a PREDATOR who preys on the sick, the desperate & people in pain. YOU'RE HIS NEXT TARGET! People in pain, from personal experience, do not think too clearly. He is counting on that! That is why he is trolling on the message boards very similar to a child molester trolling in chat rooms. Adults & vulnerable people have predators stalking them too. He wants your money--your life savings. If you want to try the medication, Hydrocortisone 20MG, starting as a loading dose then tapering down, ask your doctor. You don’t need to throw away over $7500. HC is a fast acting steroid but has a short life. It comes in lower doses so you can go up in more increments. Prednisone is a longer acting steroid.
A few more things: Ernesto will talk your ear off reading a script like a telemarketer. It will sound great. You must sign a contract & send in all the money before you learn who & where your doctor is & if you even qualify or have a condition that should prevent you from taking this drug. You could end up traveling hundreds of miles like one PD couple did. There are no "manuals," no lectures, no training & no refunds! When you are feeling your worst, you will have to fill out all those darn diaries which asked the same questions over & over then get calls almost daily to send in your scores. "Your scores" are all they are concerned about. They don't care about how you feel or how you are reacting to the drug. The person you will be speaking to, Debbie, is not a registered nurse.
Regarding his site, he makes unbelievable claims that his program had this % of reduction of symptoms...it's all a lie. If you flare up because of a storm & the next day you're somewhat recover well, to him that an improvement he can claim! Anyone to say anything. I did file a complaint with BBB which was useless. We have been going back & forth on various sites including WebMD & Ripoff Report which is a site people can list their complaint as a "heads up" since nothing can be done. On top of that, they can't be erased by PR companies. I have seen reports missing since. The BBB conveniently deletes complaint information so their rating is not accurate. I did not “receive a refund.” The money that was returned to me was the amount reserved for entering the 2nd phase of the program. For only 10 days on the drug, Stenberg kept $5,545 & returned only $1,950! As far as his numbers of my “improvement,” the symptoms improved AFTER I stopped taking the medication which came under the advice of 3 doctors including the one he sent me to!
My complaint was not “resolved” nor was it ruled “without merit.” Again, a lie. On the BBB website it states “closed.” My customer review also was never posted. Having a BBB “A+” rating means nothing. They have erased prior complaints & have “closed” cases that weren’t. They wrote to me that if an agreement wasn’t reached in 30 days they will consider the case “closed” regardless. They have no credibility! The reason why you don’t see many complaints is after being taken advantage like this when you are so desperate & in so much pain, you are so upset with yourself and sick to your stomach for doing something so stupid that the last thing you want to do is to write about it. There is no one really to look into these complaints & violations. We have to get the word out to others about people like him. That is why I am writing this. Maybe an attorney will come forward to start a class action law suit. I hope so.
Understand that you will have to pay $995 for a “digital tracking system” which is a computer graphing program that puts all those pesky scores on a graph which your kids can do. He kept all that money too. That “tracking system” is supposed to follow your symptoms the entire time you are in the program of several months. I was in for 10 days. Then there is $900 for a 50 item food allergy test from a lab that tests animals! Animals!
Oh, Dr. Jon Kell was listed on his website with supporting comments. Dr. Kell’s license was REVOKED in two states for felony conspiracy to defraud the state, one count felony Medicaid fraud, felony false writings & felony tax evasion. He is an associate of Stenberg & his foundation. Birds of a feather flock together. He lied to defraud Medicaid, the state, the patient & the government. Sounds very similar to Stenberg’s actions in the private sector!!!! As far as I see, there are 2,020 patients who have been taken advantage of by a predator & the high of a drug.
So Beware! They want their money and a signed contract up front before determining if you are even qualified or able to safely take the Hydro-cortisone. Even if you are Medically Disqualified from entering the program by a local doctor due to a condition you will only get back a small portion of the $7495 you paid to enroll in the program.
For more information & postings please visit WebMD Fibromyalgia Community “Microdose Therapy Experience” & “Use Caution with Microdose Therapy.” There is another Ripoff complaint from an employee under “Virgil Stenberg” where he didn’t pay his employee her salary. This employee saw how the scam was played with Stenberg & office staff. It sounds like Stenberg is pulling a Dr. Kell by paying people under the table and other efforts to avoid paying taxes. SOUNDS LIKE FRAUD TO ME! Vigil Stenberg, did you pay that poor girl the money you owe her! Take care of your employees! Pay your taxes & be a responsible citizen! Did you refund the money to the couple that is $6,995.00? They maxing out their credit cards & added their life savings to treat her husband's Parkinson's disease? You said you would “REFUND” people if they didn’t receive any benefit. Well put your money where your mouth is! Wow, they had to drive a 328 miles round trip for treatment. Their doctor quit Stenberg’s program. He probably realized that this too was a scam and didn’t want part of it! So what does that tell you?
So everyone, be cautious when you are reading anything related to Helen Foundation, Vigil Stenberg & Microdosing Therapy. IT’S A SCAM. In regards to the testimonies on their website or Facebook page or elsewhere, I would be very careful. It is a business and he wants your money. Remember, there are no agencies investigating these complaints. Read “Please Refund Us” planetfeedback.com/helen+fo.... I am so sorry they are going through this as I did. It’s heartbreaking. Hey, what goes around, comes around. If not in this life, the next—Virgil, Ernesto, Debbie, Helen in the office and Helen too, who is enjoying all this money that is coming in. I don’t know how all of you can sleep at night. Take care everyone! DG
Hi Everyone, I tried to locate a posting & the replies about Virgil Stenberg's Microdosing Therapy through the Helen Foundation on WebMD Parkinson's but it it states "we found no search results matching your search." Somehow, my posting very similar to this posting to warn people with PT has been removed! I know I passed this information on to WebMD to their RA, Pain, Arthritis, MS & PD communities because Stenberg is TARGETING these vulnerable people and taking their life savings with his false information & fraud. I have been noticing that some postings including from the BBB have been taken off their sites. I understand you can hire a companies to clean up the internet for you from negative information.
This information I am passing is meant to warn people about this predator who is preying on people with chronic illnesses & pain. He, like child molesters, trolls the internet for potential victims. So this is a heads up! I am planning to post another warning on WebMD PD community. We will see what happens. Again, there are many complaints on Ripoff Report because people don't know where to go or what to do when you have been ripped off by a person, organization or foundation. There are no agencies to investigate or regulate these people. Plus, once it's posted, it will not be removed like my posting was on WebMD. Be careful everyone.
Microdosing Therapy Exposed by a patient!
I know what it is like to be in tremendous pain--pain that consumes you body, mind & soul with every cell in your body screaming. I know what it is to be so very desperate that you are willing to try anything. I threw caution to the wind & entered into the Helen Foundation’s Microdosing Program in 2014. It was a huge mistake. I was not thinking clearly as I am now. So I would like to briefly expose this program. Ernesto, the vice director, speaks well from a long script yet cleverly hides important details. It all sounds good--too good. He will email you the contract which you must sign & return with a check or credit card number. He is very convincing & yes, a very good salesman. Of course, he will avoid speaking to you about whether you are medically qualified & for good reason.
On the contract, it states for “Medical Disqualification:” “I further understand that if the HFC supervising physician performing the qualifying medical exam disqualifies me from entering into the HFC program, I will be refunded what I paid LESS the cost of Phase 1 digital tracking system ($995), the cost of the …exam ($250) and the food allergy laboratory test ($900) if done.” Now, the tracking system is just a plain computer graphing program that is supposed to record all your diary scores for the several months you are on the program! Now, if the doc disqualifies you, you don’t get the medication nor do you start the “shower” phase thus you won’t have graphs. So why can’t you recover the $995? I withdrew the first week. The following hour of my call, I received 4 emailed graphs…so they can justify keeping the $995! Pretty rotten trick Stenberg!
Now, if you don’t qualify, why take a blood food allergy test at $900? Also, the allergy IgE blood test costs around $400+ and they send blood sample to Spectrum Labs in Phoenix which caters to veterinarians & pet owners! wearespectrum.com. Just check your local lab. You can get it done there on your own.
You will also receive many diaries to complete daily when you are feeling your worst. It’s enough to give you a migraine. You have to number their severity, 1-10, & add into totals & they repeat over & over. Debbie’s phone calls will drive you crazy! She’s not a nurse! All she wants are the total scores. So if you scored a 125 on your migraine sheet yesterday & 122 today, well to Stenberg, that is an “improvement” on behalf of his program not that you had a 12 hour migraine! Catch my drift?
Stenberg is not a medical doctor. He uses his PhD “Dr” to lure people into his program. He has to send you to a doctor who took his one day course. Now, you will NOT be told who or where your doctor supervising you will be! That will only be disclosed to you after they receive your money & signed contract! One couple travelled over 300 miles round trip! I ended up in the shady part of the city with a very busy OD physician who had many patients & a small office. I thought it was going to a pain clinic & that I was going to learn a lot about managing my pain & symptoms. No, not in this program.
Now, the medication is Hydrocortisone 20 mg tablets, also referred as Cortisol, is a generic drug costing about $30 for 30 days+-. Your doc will start you at a loading high dose during the “shower” phase which is 4-7 weeks long. If you survive that, you move on to Phase 2, the Maintenance, for 12 weeks tapering down to find that happen medium. If you lose the benefit which is really the steroid high, you will go through another “shower” to get you high again just before your leave the program. Now HC oral is a corticosteroid a steroid! So you’re going to feel great…for a week or so then it will start to wear off or you may start to experience adverse side effects that can be very serious. I ended up very sick with a virus that took several months to recover from because the HC weakened my immune system and triggered my EBV.
If you are interested in trying HC, just talk to your doc. If is a short acting steroid whereas prednisone is longer acting. They are in the same family of drugs. Both need to be monitored by a doc & with labs. Read the long side effect list on mayoclinic.org. The “instruction manual” are papers stapled together with useless information. If Helen Stenberg really had “severe arthritis,” HC would hardly keep her “symptom” & pain free. My family has a long history of severe RA & there isn’t a drug yet or combinations that can even make a dent in their symptoms! So, I question that claim knowing that money is always at the center of the program. This is not a “revolutionary treatment” and he is not like Galileo who was persecuted by the Church. Such arrogance.
OK, my advice to you is to stay away from this program. Ask your doc about HC. Prednisone is a better drug. There are other steroids. Its most likely the steroid high that makes you believe your condition is improving. You do NOT need to throw away $7500 or more to this fool. I hope this helps. Hang in there & keep searching for a good specialist. If took me over 13 years to find a good RA doc and she saved my life! Seriously, I would not be here if it wasn’t for her. There are good docs out there. I am concerned about your safety. I have served my country & community and I still do. Take care of yourself. This posting is for PD, MS, Fibro, RA, OA neuropathy, chronic pain…
I want to THANK HealthUnlocked for the opportunity to post this. There are no agencies to investigate these frauds and it is your site & it's post that can help prevent serious illness and even death by these predators prey on the sick, the desperate & elderly.
Microdosing Therapy Fraud Exposed by a Patient!
I know what it is like to be in tremendous pain--pain that consumes you body, mind & soul with every cell in your body screaming in pain. I know what it is to be so desperate that you are willing to try anything. I threw caution to the wind & entered into the Helen Foundation’s Microdosing Program in 2014. It was a HUGE MISTAKE! I was not thinking clearly as I am now. So I would like to briefly expose this program. Ernesto, the vice director, speaks well from a long script yet cleverly hides important details. It all sounds good--too good. He will email you the contract which you must sign & return with a check or credit card number. He is very convincing & yes, a very good salesman. Of course, he will avoid speaking to you about whether you are medically qualified & for good reason.
On the contract, it states for “Medical Disqualification:” “I further understand that if the HFC supervising physician performing the qualifying medical exam disqualifies me from entering into the HFC program, I will be refunded what I paid LESS the cost of Phase 1 digital tracking system ($995), the cost of the …exam ($250) and the food allergy laboratory test ($900) if done.” Now, the "DIGITAL TRACKING SYSTEM" is just a BASIC computer graphing program that is supposed to record all your diary scores for the several months you are on the program! Now, if the doc disqualifies you, you don’t get the medication nor do you start the “shower” phase thus you won’t have graphs. So why can’t you recover the $995? I withdrew the first week. The following hour of my call, I received 4 emailed graphs…so they can justify keeping the $995! Pretty dirty rotten trick Stenberg!
Now, if you don’t medically qualify, why take a blood food allergy test at $900? Also, the allergy IgE blood test costs around $400+ and they send the blood sample to Spectrum Labs in Phoenix which caters to veterinarians & pet owners! wearespectrum.com. Just check your local lab. You can get it done there on your own. You will also receive many diaries to complete daily when you are feeling your worst. It’s enough to give you a migraine. You have to number their severity, 1-10, & add all the darn totals & they repeat over & over. Debbie’s phone calls will drive you crazy! She’s not a nurse! All she wants are the total scores. So if you scored a 125 on your migraine sheet yesterday & 122 today, well to Stenberg, that is an “improvement” on behalf of his program not that you had a 12 hour migraine! The same if you have a flare up during a storm, if your score is lower the next clear day, well to Stenberg, that is an "improvement" he can claim! Catch my drift? My "improvement" can after I stopped taking the drug at the advice of 3 doctors including the one he sent me to! He claims it was his program that was responsible for this. Stenberg, are you for real? I think you have lost your marbles!
Stenberg is not a medical doctor. He uses his PhD “Dr” to lure people into his program. He has to send you to a medical doctor who took his one day course. Now, you will NOT be told who or where your doctor supervising you will be! That will only be disclosed to you AFTER they receive your money & signed contract! One couple travelled over 300 miles round trip! Do read their heartbreaking complaint helen-foundation.pissedcons...... Also read “Please Refund Us” planetfeedback.com/hele...I am so sorry they are going through this as I did but this is reality. It's hard to write about this when your are so sick, so disgusted with yourself to doing something so stupid. I had a very hard time as well but I wanted to get the word out! Do also read "Call 12: Couple dispute clinic's charges" archive.azcentral.com. Wow! I can't believe how unsympathetic & arrogant Stenberg was in the article. That is the sign of a PREDATOR who just wants your money and really doesn't care about truly helping people with serious chronic illnesses.
As for me, I ended up in the shady part of the city with a very busy OD physician who had many patients & a small office. I thought it was going to a pain clinic & that I was going to learn a lot about managing my pain & symptoms. No, not in this program. Now, the medication is Hydrocortisone 20 mg tablets, also referred as Cortisol, is a generic drug costing about $30 for 30 days+-. Your doc will start you at a very high loading high dose during the “shower” phase which is 4-7 weeks long. If you survive that, you move on to Phase 2, the Maintenance, for 12 weeks tapering down to find that happen medium. If you lose the benefit which is really the "steroid euphonia," you will go through another “shower” to get you high again just before your leave the program. Now HC oral is a Corticosteroid a steroid! So you’re going to feel great…for a week or so then it will start to wear off or you may start to experience adverse side effects that can be very serious! I ended up very sick with a virus that took several months to recover from because the HC weakened my immune system and triggered my EBV.
If you are interested in trying HC, just talk to your doc. If is a short acting steroid whereas prednisone is longer acting. They are in the same family of drugs. Both need to be monitored by a doc & with labs. Read the long side effect list on mayoclinic.org. The “instruction manual” are papers stapled together with useless information. If Helen Stenberg really had “severe arthritis,” HC would hardly keep her “symptom” & pain free. My family has a long history of severe RA & there isn’t a drug yet or combinations that can even make a dent in their symptoms! So, I question that claim knowing that money is always at the center of the program. I can also see Helen's hands in one pic. I can see that they are deformed from arthritis. There is NO doubt in my mind that all her arthritis symptoms & pain are controlled with just HC. So there is a SCAM here involving both husband & wife because they are both benefiting by defrauding you! Also, this is NOT a “revolutionary treatment” and he is not like Galileo who was persecuted by the Church. Give me a break! Such arrogance. If you want to read more visit healthunlocked.com/parkinso.... Now, I did not receive a "refund" and my BBB complaint was "closed." The money, $1,950 out of $7495 was returned money because I did not enter phase 2. So for only 10 days in the program, Stenberg kept $5,545.
OK, my advice to you is to STAY AWAY from this program. Just ask your doc about HC. If you read about someone posting on how great they feel with Stenberg, how could they when they paid $7500+ for a bogus program which uses a rather old drug that costs $30 a month which you also pay for!!!!!! THINK ABOUT! It's most likely the steroid high that makes you believe your condition is improving. You do NOT need to throw away $7500 or more to this FOOL. Also, there is a Consumer Alert on Low or Micro Dose Hydrocortisone Therapy based on 2 trials--fmnetnews.com. “There is no published evidence that low dose hydrocortisone therapy works for relieving the symptoms of fibromyalgia.”
I hope this helps. Hang in there & keep searching for a good specialist. If took me over 13 years to find a good RA doc and she saved my life! Seriously, I would not be here if it wasn’t for her. There are good docs out there. I am concerned about your safety. I have served my country & community and I still do. Take care of yourself. This posting is for PD, MS, Fibro, RA, OA neuropathy, chronic pain…
There is another Ripoff complaint from an employee under “Virgil Stenberg” where he didn’t pay his employee her salary. This employee saw how the scam was played with Stenberg & office staff. It sounds like Stenberg is pulling a Dr. Kell by paying people under the table and other efforts to avoid paying taxes. SOUNDS LIKE FRAUD TO ME! Vigil Stenberg, did you pay that poor girl the money you owe her! Take care of your employees! Pay your taxes & be a responsible citizen! Did you refund the money to the couple that is $6,995.00? They maxing out their credit cards & added their life savings to treat her husband's Parkinson's disease? You said you would “REFUND” people if they didn’t receive any benefit. Well put your money where your mouth is!
Remember! There are no agencies to investigate these frauds and it is your site & it's post that can help prevent serious illness and even death by these predators prey on the sick, the desperate & elderly. If you're sick now, wait until you go through an experience like this. I know he is TRYING TO BAIT YOU by stating it's only $500...and your will be "refunded" but you won't. You will be added to list of people HE PREYED ON. DON'T BE HIS NEXT VICTIM! Just ask your doc about trying the drug yourself. Prednisone is a similar drug that is more effective. He will have you sign a contract, send money in before you will even know who or where your medical doctor is. Mine had no time for me. Please don't have anything to do with this fool. Your PD specialist knows how to help you, this fool doesn't!
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