Alternatives

[cshamb]

Some time ago I asked if anyone had treatment at the Helen Foundation. They say they can help. I believe someone was going to try their treatment but nothing has been posted. Perhaps it didn't work.. Anyone heard of Helen Foundation?

[grandmasanta]

Never heard of the Helen Foundation......

[gmunsot]

Never.

I can try to find it

[DebbieG49]

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 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, 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. 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 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 common 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. 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 lost a lot of money and I now 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 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 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 tbs (40 mgs) then 1 ½ tbs (30mgs) 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 our symptoms. This program is very expensive for what your doc can do with you. Take care.

[cshamb]

Thank you so much for responding to my question. I will stay away from that alternative treatment. I am just sorry you had to go through it. That is what is so great about this message board we are learning from each other.

[DebbieG49]

Hi cshamb, yeah...I'm kinda bummed out that I lost all that money for a medication that caused me so much misery. Of course, Dr. Virgil Stenberg & the Helens Foundation made me pay $5,545 for the 15 days I was on the Hydrocortisone regardless of the side effects I suffered. Surprisingly, during the last 4 days of the 15 days I was on the medication, he claim I had an "improvement" which he thinks he is responsible for. The 4 days he is referring to were the days I stopped the Hydrocortisone and was trying to get back my "normal" status prior to starting the drug. Ugggg. I wish he just used some common sense! If I am off the medication due to its side effects, no doubt I am going to get better! I don't need a $900 computer program to tell me that! They really gave me a good sales pitch with the promise of lessening my pain as they did with 1900+ other fibromyalgia & arthritis sufferers. I bit the hook & ate the whole fishing pole. If you have a good RA doc which I do, make sure you ask them about these alternative treatments. I had a neurologist tell me that his Hyperbaric Oxygen Therapy would help me if I gave him $5000 for 20 sessions. I was told by another doc that he & other docs are just trying to pay for the unit they purchased. The same is true for the spinal decompression unit. I found no patient reviews outside a treatment center that said such treatments helped them. Just as I didn't find any patient reviews about the foundation outside of the foundation. So I hope to start a trend. Your right! We do need to let others know what treatments have helped us, what have caused more pain and of those who are taken advantage of others sufferers. During the 13+ years I have suffered, I have tried most of alternative treatments available and they only aggravated my condition and caused me more flare-ups. I wish Dr. Virgil Stenberg had more interest in the people he treats through the Helen Foundation rather than receiving their money. I hope I can stop other people from being taken advantage of. Sometimes the pain is so bad you are willing to try anything. Take care, DG

[Hikoi in reply to DebbieG49]

You are right Debbi about the difficulty of finding patient reviews that are not filtered through the organisation promoting the treatment? They seem to make sure they are top in listings when using the search engines. The results then are very biased. Perhaps to start we could have a negative experiences thread on here.