Use Caution with Microdose Therapy fr... - Fibromyalgia Acti...

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Use Caution with Microdose Therapy from Helens Foundation!

DebbieG49 profile image
10 Replies

Hello, I wish to convey to you fellow sufferers about my experiences with Microdose Therapy from the Helens Foundation who claims to reduce pain for Arthritis, CFS, Fibromyalgia, 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 or loading dose, of 100 mgs of oral 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 to complete basis daily activities and take care of my mom who suffers from severe Arthritis. 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 5 mg). 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. There are some other small differences between the two but not much. The Loading session cost me $3400 even though I got sick on the medication and couldn't complete the 3 weeks. His cold response in a final letter was "Which are we to believe: Ms G diary numbers or her words?" Uggg. If this wasn't a slap in the face I don't know what is!

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. They weren't concern with my reactions and wanted me to continue...probably to get the rest of the money. I paid $900 for Food Allergy Testing through the program which came from a Lab that specializes in testing horses, dogs and cats. You can find a similar test for $400-500. Check your local lab. I also had to pay $995 for a digital tracking system (a computer graphing program) which charted my daily fluctuating symptoms from 4 pages of pain diaries. Dr. Virgil Stenberg claimed I had an "improvement" in my symptoms which he think he is responsible for. Those 4 days came of "improvement" came after I stopped taking the medication due to the side effects! My body was trying to return to its "normal" status prior to starting the drug! Of course, symptoms wax and wane with constant flareups from activity, storms, stress... It would be best if the doctor used some common sense! So just to let you know this is how they get the “percentage of improvements” they claim to make. I didn’t take a statistics class but I also know there are false positive errors which factors can be misinterpreted. All they are concerned about are the total numbers on the many pain diaries they send to you which you fill in when you’re feeling your worst. I thought they were going to help teach me more about the cortisol levels and of pain management but this is not the case.

So be warned! You are either a predator or you are prey! I lost a lot of money and I now regret entering the program. I was a fool! Hydrocortisone (pill cortisol) in lower doses may work for you but please be very cautious about this program! You sign a contract and you will lose most of your money even if you can't tolerate the drug. 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 and 5 tablets of 20 mgs 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 (60 mgs) week 2 tbs (40 mgs) then 1 ½ tbs (30 mgs) for a week. I had to taper down early then stop the medication per doctor’s orders. Actually 3 docs told me to stop. 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. When one is in pain, one tends to try everything and everything to help relieve the pain. This program is very expensive for what your doc can do with you. This is just a shout out to all you sufferers. Take care & hang in there. DG

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DebbieG49
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10 Replies
TheAuthor profile image
TheAuthor

Hello DebbieG49

I sincerely hope that you are feeling as well as you possibly can be today? I am so sorry to read that you have paid out a lot of money for something that has been of no use to you whatsoever.

I genuinely hope that you can find some resolution and relief to your Fibro and the associated health problems that it gives you.

All my hopes and dreams for you

Ken x

DebbieG49 profile image
DebbieG49 in reply to TheAuthor

Hi Ken x. Thank you for your response. I still feel sick to my stomach for believing in this program and of losing so much money from my savings account. Money that caused me a lot of blood, sweat and much tears! It is a lot of money and I was a fool to believe in their 45 minute sales pitch. When I got the call of "we have received your check" I had a strange and sick feeling that I was being preyed on. It was the money they were most concerned with! I now recall that they didn't want to say too much about the program until you send your check in. What a fool I am but desperate people in pain do desperate things. I hope I can raise a caution flag to others who hope for relief & are being prey upon. There are a lot of people praying on people in pain, seniors and the elderly. This program is one of them. Thank you for posting my caution to others. I hope they read the reviews that are surfacing. Some are similar to mine. Outside of that, I am over the side effects and back to my "normal" status of pain. I see my RA doc in a few days. To Dr. Virgil Stenberg I would like to say: Please re-read the Hippocratic Oath--"Do no Harm!" Take care. DG

Boronia profile image
Boronia

You are so right-desperate people do desperate things! I have looked at all sorts of these types of things and maybe, luckily, am quite broke so couldn't, but if I had the money....we all just want to feel better. Often you can find reviews of different programmes on the net....hopefully a link to your post will come up if anyone is searching for information on this programme. Wishing you the best

Hi Debbie :)

I'm sorry that you've fallen into the trap of one of these 'do this and get better' schemes and must thankyou for bringing it to our attention.

There are many books and schemes floating about by people who sell their miracle stories and then pass you on to buy this and get better supplements or descriptors about what to do regarding medications.

I am pleased that you discussed this with your medical care providors first and am sorry that you made the wrong decision. We all make mistakes sometimes and embarrass ourselves too as a result. You needed to try something new and that is a frustration we all feel many times to have a world without pain. Chronic pain disorders such as Fibro take too long to manage and control and it's exhausting to boot never mind all the other illnesses which is why we will clutch at anything.

I must say for the benefit of our members that it is never a good idea to stop taking medications or changing them without speaking to your doctor first as the adverse effects may make you poorly. Any treatment you think about trying may also have an effect and should also be discussed with your GP, as a preautionary measure before starting it :)

Thank you again for the warning and hope you find relief for your pain soon

:) xxxsianxxx :)

tettridge profile image
tettridge

Hi Debbie

I fell so sorry that your hopes were dashed and you got no relief from this. I can only imagine what you are going through, spending all that money and getting nothing but a slap in the face for it must be so horrible and will only increase the stress levels of an already stressed out body.

I am a believer in Karma and I always think that they will get their own returned to them (at least I really hope they will)

I do hope you can speak to your doctors and explain that this is how bad you feel that you are in that much pain you will gamble on a hope of it working for you so they might realise how bad you are and take another look at what they are doing for you.

Take care and kindest of regards

Terry

Mdaisy profile image
Mdaisy

Hello DebbieG49,

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 there 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.

I have found an article about a consumer alert about this very product on fmnetnews.com/ a website for people living with Fibro, site registered to America.

fmnetnews.iraherman.com/cop...

It states the following: Despite these two negative studies documenting the ineffectiveness of low-dose of corticosteroids to relieve the symptoms of fibromyalgia or chronic fatigue syndrome, this treatment is sometimes endorsed for fibromyalgia (Fibromyalgia Network)

I am sorry that this information was not available to you prior to this incident but praise you for sharing this to help to inform others about these products. If anyone would like to see which medications have been recommended in the treatment of Fibro, I would visit our FibroAction website fibroaction.org as we produce evidence based information and also hold the Information Standard certificate too.

Here is a link to the information standard for your reassurance;

theinformationstandard.org/...

Again DebbieG49, Thank You for your post which may help many others

Best Wishes for the future

Emma :)

FibroAction Administrator

DebbieG49 profile image
DebbieG49

Hi. Thank you for the reply. I wish I would have found the information regarding Microdosing Therapy on your site. I did received feedback from a fellow sufferer 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. Kell endorses Dr. Stenberg’s program! So everyone beware! Birds of a Feather Flock Together! I hope this helps prevent others from being preyed upon. When one is in pain, one tends to try everything and anything. I did file a complaint with the BBB and I will be pursing other avenues on this matter including filing a complaint with the AZ Medical Board. The BBB's email stated that the BBB will ask the business to respond within 14 days, and if a response is not received, a second request will be made. I will be notified of the business’s response when we receive it (or notified that we received no response). Complaints are usually closed within 30 business days regardless of a response or a non response from the business. I don’t expect a response so I will continue to post my experience on social media so I can try to warn other fellow sufferers about this scam. Thank you everyone who replied. I was such a fool! Thanks again. Take care. DG.

redkodiak profile image
redkodiak

thank you for sharing that. I had my "consultation" call yesterday and it smacked of something wierd when they want $7600 up front without accountability for its usefulness to the patient.

You spared me another wild goose chase led by money suckers praying on the chronic pain patients.

Bless you.

DebbieG49 profile image
DebbieG49

Hi redkodiak. I am glad you came across my personal account with the Helens Foundation and their Hydro-cortisone Microdosing. I am still kicking myself in the @#% for being such a fool for entering this program and paying all that money. I was miserable and in a lot of pain which made me vulnerable for predators. Yeah, now that I have had plenty of time to reflect on it I do recall that Ernesto Gallegos the Vice President of the Helen Foundation read a rather long prepared sales pitch written my Dr. Virgil Stenberg during a 45 min or so phone "consultation." They wanted their money and a signed contract up front before determining if I was even qualified or able to safely take the Hydro-cortisone. Even if you are Medically Disqualified from entering the program by a local doctor they send you to you will only get back a small portion of the $7495 you payed to enroll in the program. I was only able to recover $1950 out of the $7495 I paid up front. I was only in the program for 2 weeks out of the 5 month long program. They don't care what kind of reactions you might have. All they care about is the money.

I thought they would have a pain management clinic nearby where I could learn more about pain management. Instead I was sent to a neighborhood GP doctor who had patients coming in and out of his office. I walked in. He wrote a prescription and I was out the door in a short time. A patient manager would call you wanting your pain diary scores. There were no "physician supervised treatments." All they cared about were your diary numbers which consisted 4 pages which you faxed in or emailed in. They forward the scores to Dr. Stenberg and he would put them in his graphing computer program which would generate color graphs like the graphs you played with in grammar school only this one costs you $995. He calls it a "digital tracking system" but it is nothing but a colored graph. In every phone conversation with the manager she would start of by saying, "Oh, you sound better than the last time I spoke to you." At the time I was having a lot of adverse reactions to the high dosage and I wasn't feeling good at all. In fact I felt like hell. Finally, I said to her, "You would probably say the very same thing if I was on my deathbed and no I am not feeling better. In fact I am worse...

What is another kicker is that the food allergy testing they charged me $900 is from Spectrum labs which tests dogs, cats, horses for pet owners & vets.

Outside of his pre-prepared emails and a rather insulting final letter I had no communications with Dr. Stenberg. How he came up with 18%, 21%, 7% & 32% improvement of my pain is beyond me outside of stopping the drug and allowing my body to recover on its own. I have the total numbers which show a dramatic increase in pain... In his final letter he wrote, "Which are we to believe: Ms...diary numbers or her words?" I do believe the numbers come from the words.

Anyway, it is all about profiteering off people with chronic pain like you have said. It is bad enough that you are in constant pain day & night for years & year, that you have lost everything you have worked so hard for only to be preyed upon by a physician.

Dr. Stenberg is holding a lot of seminars targeting suffers of Parkinson, Multiple Sclerosis in addition to Arthritis & Fibro. I don't FaceBook but if I could I would try to reach out to other suffers who he is preying on to give them a heads up. Someone wrote to me about how Dr. Stenberg is taking advantage of the temporary high from the steroid medication which eventually wears off several months later and that is how long his program is. I understand this feeling of well being from taking predisone years ago. I did feel good and I had less joint pain and with a cup of coffee I could do almost anything but the good effects of predisone were soon replaced with adverse effects that forced me to stop taking the med.

All I can say is find yourself a good Rheumatologist and hang in there. Again, I am glad that you didn't fall into the trap I did. Hey are you from Kodiak Alaska? I was stationed in Ketchikan when I was in the Coast Guard back in the 80s. I love Alaska. I wish I could live up there. Take care and thanks for your reply.

DebbieG49 profile image
DebbieG49

I wish to relay a posting about Micodosing Therapy and the Helens Foundation. This post came from the WebMD Parkinson’s Disease Community. I want to warn other chronic disease/pain sufferers so they don’t get taken advantage of as I was and many others.

“Three peoples experience with The Helen foundation at: scamorg.com/helen-foundation-43. One story there is by a person who was an employee and worked for a year with Dr. Stenberg (retired University of North Dakota chemistry professor), Ernesto Gallegos (car salesman), and Debbie Malone, the nurse who advises you while you are in the program and is an unlicensed nurse. Sorry, sounds like a very expensive and potentially life threatening lesson in how to lose $7500. Cortisol medication has a long list of bad side effects.”

Please, please, please ask you doctors about this Helens Foundation Microdose Therapy. Search the Internet. Read posts about people's personal experiences who were in the program. I have yet to see a positive patient response to the program outside of the Helens Foundation website. Do not, not, not believe what you read on that site. There have been customer complaints and customer reviews listed on the BBB website which have been removed. I wrote one and it is no longer listed. In fact, it lists 0 negative customer complaints and that is false. Mine was posted and now it has been removed along with other customer complaints. If you want to try cortisol/hydrocortisone for your conditon ask your doctor. It is really no different that prednisone. You do not, not, not need to spend $7500.00.

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