i would like to know more about the micro therapy.

[judam9]

is it normal to continue losing weight with parkinsons? i'm down to 101 lbs . skin and bones. and i eat as i usually do. what is going on.? my doctor gave me a medication to have me feel hungry, but my heart keeps racing and i get really shaky inside.

[sugar50]

I have a problem also

[sugar50 in reply to sugar50]

Hi never wrote on here before, Tried to sign up and they say my eMail was already

used. I believe some have called me sugar 50? ? ? Don't know what is going on.

[etterus]

I am down 35 lb's in the last year. I have very little appetite and feel full with several bites. Tremor, dystonia and diskynesias all increase muscle activity and metabolism.

[wifeofparky]

My husband eats nearly constantly yet I can see the loss of body mass. His muscle mass is still there but he much leaner than he used to be. I've noticed this more over the last year.

[judam9 in reply to wifeofparky]

dear wifeofparky,

it sounds like it's not going to do much gaining of weight to even eat a lot,

i wonder what is causing this to happen, it doesn't seem like everyone has this problem. ? thank you, judam 9

[judam9]

well thanks, i guess i'm not alone. i complain about my losing weight, and everybody says i can have some of theirs. very funny. it must be as hard to gain weight as it is to lose weight. i've lost about 40 lbs in the last year, i'm going to blow away one of these days. my husband has started to feed me scrambled eggs and hash browns for breakfast, along with my usual all bran, cranberry and walnut muffin for breakfast. i guess that is not enough. i know ensure helps but i can't drink 4 or 5 bottles a day. besides that it is expensive. i don't know what dystonia or diskynesias is. perhaps you could enlighten me. thanks. judam9

[etterus]

Dystonia is excessive muscle tone that is steady but does not produce movement but rather has constant tension... can be painful. Diskynesia is the writhing movements that create a dancing like appearance in the extremities or trunk. It usually is a consequence of c-l dopamime supplementation.... pills.

[judam9 in reply to etterus]

that sounds about right. who needs a doctor. ? i'm always tense, but when i relax, i falls asleep. for two minutes. dystonia, well i didn't know it had a name . thanks you so very much. etterus . i feel like a stone. and you're right it is painful. i've just gotten used to it. you mean if i would stop taking dopamine it would stop. ?

[etterus in reply to judam9]

This is a question for a movement disorder nerologists.

[judam9]

you are most likely right, i hope they have an answer.

thanks again. i'm probably wrong, but i get the feeling that they don't know much about it either.

thanks.

[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 RA, CFS, Fibro back pain & migraine… sufferers 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 caters to 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!” 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. 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. Towards the end 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.