Use Caution with Microdose Therapy!

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by DebbieG64, May 5, 2014.

  1. DebbieG64

    DebbieG64 Member

    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) tablets. 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?" 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 of "improvement" came after I stopped taking the medication due to the side effects! My body was trying to return to its "normal" chronic pain status prior to starting the drug! Of course, symptoms wax and wane with constant flare ups from activity, storms... It would be best if the doctor used some common sense and recall the Hippocratic Oath of “Do No Harm!” 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 (oral) 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
  2. Mikie

    Mikie Moderator

    Yikes! I'm so sorry for the loss of all that money on something which didn't work and is potentially dangerous. My peptide injections, which were very effective, cost half that much. Thank you for sharing your experience. I'm sure it will be very helpful to many here.

    Love, Mikie
  3. DebbieG64

    DebbieG64 Member

    Hi, I have been suffering with very painful Fibromyalgia, TMJ, Arthritis & 4 herniated discs for 13 years after a work related injury. I have just found a RA doc who is like a Dr. House so we are trying different treatments & drugs. I was on Prednisone for a few years and it helped but I started to suffer some side effects including an increase of pain in the head, face & neck with a lot of weight gain. I felt that my face, neck & armpit glands were swollen so I had a scan and there was no Lymphoma...thank goodness. I was hoping the foundation would help me with pain management...but it wasn't what I expected. I was hoping the Hydrocortisone would be an alternative to the Prednisone since it is more "natural" and "similar to your body's own cortisol" but I could not tolerate it at all. The foundation believes that everything can be cured by maintaining a certain level of cortisol in the body by using a small dosage of Hydrocortisone every day to boost your bodies low cortisol level which they believe is the cause of chronic pain, Arthritis, FM, CFS & other diseases.
    I did file a complaint with the BBB hoping to get back some of my money but I am not expecting anything. Dr. Stenberg is pretty arrogant. I was a fool and I hope I can stop others from making such a foolish & costly mistake. At the time I was off the biologic because I had a viral infection. Docs in Florida do not want to prescribe pain meds and most don't help me.
    I have been on a few biologics but there were no help except for Embrel but I later had an allergic reaction to the injections & I had to stop. Right now I am in soooo much pain I would just give up if I didn't have to take care of my mom who has severe Arthritis. I just don't care what I take whether it is steroids, an biologic... When one is in so much pain one will take or do anything. Before I was injured I was in a very physically demanding and a somewhat violent profession & a hockey player so I have had a lot of experience with pain but never at this level and with this type of pain. I think the organization came up when I was doing a severe fibromyalgia pain search. I have been struggling since I was 36 and I really do not have any hope for the future. I have seen 4 generations in my family who have/are suffering with severe RA & other forms of chronic pain. Even though they have come out with a lot of RA meds none of them has helped my mom. I don't believe the medical community is doing much for chronic pain/fibro because it is not a fatal disease like cancer... First, they need to find the cause of FM pain before handing out drugs for FM pain. All I can say is people in severe chronic pain will try anything regardless of the side effects. Money no longer matters! Life no longer matters! Take care, DG
  4. tig519

    tig519 Member

    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


  5. tig519

    tig519 Member

    I know you said you contacted the BBB... have you discussed with your own doctor to file a claim as well? This business should be shut down. Consider filing criminal charges against them for false advertising... considering the testimonials are suspect- I would bet the rest is as well.
  6. DebbieG64

    DebbieG64 Member

    Wow! Thank you tig519 for the reply! Thank you for your advice. I wish I used some common sense before I entered the program. I wish I knew I could have access to such vital information. Thank you for the lesson. I promised my docs that I would not go on anymore "adventures." I hope you don't mind but I copied your reply and I posted it on another health website, prohealth.com., in response to someone who was all gooshy on the "love story" posted on Dr. Stenberg's website. Oh please! I did file a complaint with the BBB but I haven't received a reply. I wish I could pursue other avenues but I just hurt too much and I barely had the energy to get through the day. That is why these predators prey on sick people because we just don't have the strenght to fight them in court which I am sorry to say.
  7. DebbieG64

    DebbieG64 Member

    Hi tig519. Here is the BBBs reply:

    Dear... :

    You recently requested help from Better Business Bureau of Central, Northern and Western Arizona (BBB) concerning a problem with Helen Foundation. To date, BBB has not received a response from the company.

    Although a reminder has been sent to the company, we are inquiring with you to see if you have heard from the company directly. Please contact BBB with the status of this matter if the company has contacted you and the matter has been resolved. If you have not heard from the company, there is no need to reply.

    While many times a reply is received quickly, in some cases a company can take longer to respond. You will be contacted again if a response is not received from the company. We appreciate your patience during this time.

    Sincerely,

    Ashley Harris
    Your Better Business Bureau

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  8. tig519

    tig519 Member

    I really feel bad for you... and the others taken advantage of by this group. I would also encourage you to write a formal complaint to the Medical Board in AZ. Use the example of their "testimonials" as well. It may just come down to contract law as to whether they owe you any $$s. However, false claims are something the Medical Board is interested in.

    Others may have specific experience in filing a complaint... I'll leave to them to respond.

    good luck.
  9. DebbieG64

    DebbieG64 Member

    Thanks tig519 for your encouragement and information. What website did you use to find the Disciplinary actions against Dr. Michael Jon Kell who recommended Dr. Vigil Stenberg's Microdosing Therapy on the Helen Foundation's website? I can't believe Dr. Stenberg posted Dr. Kell's testimonial even when he has this license expired! I didn't know we had access to such information which is probably public record. I didn't think to research the doctors on his website. I will file a formal complaint to the Medical Board in Arizona. The BBB 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. 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. DG
  10. DebbieG64

    DebbieG64 Member

    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.”
  11. DebbieG64

    DebbieG64 Member

    Now about the A-rating by the BBB the Helens Foundation claim they have. There have been a few complaints filed including mine which are shown to be “resolved.” My complaint was not resolved! I don’t think the others were either. The BBB really does nothing in regards to a complaint. You send in a complaint. They forward the complaint to the company/doctor. You get a response back & the case is closed! Nothing was “resolved.” I did get a response back from Dr. Stenberg via the BBB but it was useless rambling about medication dosing. Again he was not concerned what so ever that the medication he was issuing via his clinic was actually harming the patient. He is not, not, not concerned about your health! THIS IS JUST A BUSINESS TO MAKE MONEY OFF PEOPLE WHO ARE SUFFERING FROM CHRONIC ILLNESSES AND IN A LOT OF PAIN! I am sure there are a number of people who had similar issues with the Helens Foundation but were too sick and disgusted to write a complaint. I WAS SO SICKENED & DISGUSTED WITH MY EXPERIENCE OF THE HELENS FOUNDATION! It took a lot of energy and time to post my experiences in hope of warning others so they don’t get taken advantage of as I was. I also wrote a customer review on the BBB site for the Helens Foundation. It was posted. I saw it & read it. THAT CUSTOMER REVIEW ON THE HELENS FOUNDATION HAS BEEN REMOVED! In fact, there are no reviews listed. That seems rather odd for a business which has been around for years. Yet, I am reading all sorts of complaints on other sites. I know my customer review was posted on the BBB because someone thanked me for my review which saved him the headache I had experienced. Another thing. I know there was another BBB complaint listed on the BBB website before I filed my complaint. It may have been from a Parkinson’s patient of Dr. Stenberg. It too has been REMOVED FROM THE BBB WEBSITE! So do not believe what you read on the BBB website. I know for a fact that customer information about the Helens Foundation HAS BEEN REMOVED! A “A-rating” from the BBB essentially means NOTHING!
  12. DebbieG64

    DebbieG64 Member

    In regards to the so called “improvements” the Helen Foundation claims from Microdose Therapy, this is a fabrication! I had serious adverse reactions from the cortisol/hydrocortisone medication prescribed to me by the Helens Foundation and I was in a lot of pain due to the overdosing. Yet Dr. Stenberg claimed I had “18%, 21%, 7% & 32% rate of improvement.” These figures came a week AFTER I STOPPED TAKING THE CORTISOL MICRODOSE THERAPY. Of course, I am going to have an “improvement” because I am OFF the drug he prescribed for me! Your numbers are FALSE! And so are his $995 colored graphs which we used to do in grammar school with crayons. Besides anyone with a chronic disease/pain knows that your symptoms & pain wax & wane. The waning times are NOT improvements. There is NO EDUCATION TO PATIENTS. All they care about are the darn diary numbers you have to record and phone/FAX/email in to Debbie Malone who is not a nurse. They do not care how you feel while you are taking the medication or how you are reacting to it. They just ask for the total scores so Dr. Stenberg can play on his computer with his computer color graphing program. That is it. They ramble on about “improvements” and “1,938 patients and two university studies” but it is a bunch of baloney. As far as I see, there are 1,938 patients who have been taken advantage of by a predator. I don’t understand how they can do this to people, people in pain, people with chronic diseases, people who essentially have no hope to be normal again, happy, healthy & pain free. They are just another kind of predator. So beware! IT IS ALL ABOUT THE MONEY. YOUR MONEY. It makes me sick! They are on the WEB MD message boards trying to drum up YOUR MONEY! It has NOTHING TO DO WITH YOUR HEALTH OR WELL BEING!