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I have been reluctant to share information from others on effective treatments. It is not that I wanted to keep this information form others. Rather, this information is one person's experience.. It has no scientific validity without well researched double blind studies. But there is so much to learn yet about HNPP, I did not want to keep this information out of the hands of people who can use it, if it really does work.
So bear in mind as you read this:
I am not promoting or discounting any of it.
The solutions included here, have not been studied
They are only one person's findings
Try them as you see fit, after consulting with your medical provider
Don't feel you have to try any of it.
Don't feel guilty if you choose not to try it or you try it and it doesn't work for you.
Eat for your blood type diet/Atkin's diet
I've been trying to good more in the direction of the "Eat Right For Your Blood Type" diet. Very basic for the type 'O' blood type. Basically just beef/fish and some greens/green veggies. Bread, milk, rice, corn, potatoes, starchy vegetables are out.I still am working on breaking the psycological addition to carbs....mainly cereal (puff wheat) and milk. Bread is pretty much although I break down for good pizza (especially homemade from the bread machine!!!) . The Atkins diet is pretty much the same except he has a bit more carbs in his total diet plan.
I definitely notice a big difference in clarity of thinking and general over well being sticking to this type of a diet. Not that I need to loose weight since I'm already pretty slim. Just for the feeling of 'great'!! I must say it does make a noticeable difference in the reduction of pain and the overall HNPP symptoms. Less weakness accompanied by this type of diet.
Been trying to go a fast 1-2 times a month for a day or two. Just water and lettuce to clean out the liver and body. Need more work in this area!! As one researcher put it recently in the news...'eat less...live longer'. When you do eat...eat healthy or what's good for your blood type/DNA!!! Heck...it worked for the rats!!! Maybe add 6-10 years on your life recent news reports say. In a recent Parade magizine, there was an article by some doc that said with-in five years there will be a DNA test. Your doc will be able to administer in 'his office' to tell you what foods are ideally suited for your DNA. Horray!!!!!
Cutting Sugar and Carbs
I found that once I cut sugar and carbs from my diet I was not so tired. You can also take whey powder to boost energy. Fatigue seems to be a major component of hnpp.
Modified Anti-Candida Diet
The diet was not one diet in particular but a modified version of the anti-candida diet. I followed the anti-candida diet for the first three weeks, where I ate nothing that contained yeast, sugar of ANY sort...fructose, dextrose, sucrose, glucose...blah, blah, blah, and nothing that was fermented, vinegars, mushrooms. I also avoided all dairy except for yogurt, and I did not eat anything with wheat. After three weeks, every three days I added a new fruit....and saw how I reacted to that. I also tried wheat and had a big flare up. I avoided colorants, preservatives etc....just basically ate as naturally as possible. I used rice milk, eat grains other than wheat etc......it is VERY hard to stick to the diet....I am proud of myself though because I have done so well, and thru a LOT of willpower and determination, I have managed to stick to it except for that one week where I strayed. It is especially hard this time of year with all the baking but let me tell you this.....once you cut sugar for this long, when you taste something with sugar it is sooooo sickly sweet you almost gag. I had dip and potato crisps that I was unaware that BOTH had sugar in them and I tasted it right away and felt sooo bad after. You will enjoy the natural sweetness in fruit and veggies so much more after a week of this diet. Your mental clarity will amaze you too and you will be able to reduce the meds you take.....
You probably all think I am crazy but I am doing so much better......I know I will always have symptoms of this disease, I cannot change my genes, however I have DRASTICALLY changed the quality of life I was living, and I was just as sick as some of the sickest on the group. I was looking at ordering a scooter this time last year! I was on morphine for the pain.....I required sleeping pills to sleep.....I do not expect an overnight success in a return to better health, but each day I grow stronger. I have had set backs....usually done too much or eaten the wrong thing...but I know now how to manage this disease, and I REFUSE to let it hold me back.
Since this last communication something very strange and important has happened. The steroid injection dramatically reduced pain, but pressure palsy persisted. Further, I discover that my hypertension, which was in control, was now wildly out of control. I was put on Zestril (lisinopril). A slow but steady improvement in underlying symptoms (the palsy not just the pain) resulted. Why? One possible explanation is that ACE inhibitors reduce the level of TGH Beta (Transforming Growth Hormone Beta 1). In the treatment of certain Kidney disorders, it is now known that reducing TGH Beta slows or stops the formation of fibrous tissue. This may similarly work on the nerve tomacula.I can't ignore the fact that this may be an effective treatment for others
I discovered that Phenergan had a beneficial effect, on neurologist (a scientist and researcher) concluded it was in a class of drugs called neural moderators, put me on nortriptyline (50% of the dose used for depression). I had a dramatic effect, just like the movie "awakenings". I still had motor sensory deficit and pain, no reflexes, etc.
EMG's (arms and legs) that both my father and I found more painful than most, were therapeutic. My symptoms would get worse, my Dr. would do another series of EMGs in search of a cause, the next day I would feel better. When I suggested a cause/effect he did EMG stimulations at the various points without the associated measurements (it took 20 minutes instead of 2 hours) and it made a real difference. More experimentation and we refined the dose, location, and frequency of treatment.
Physical therapy helped. Heat and stretching at least once a day, a one hour regimen three times a week with equipment for each muscle group.
Ed. Note: Be cautious on this one. Stretch needs to be very gentle in order to avoid causing a pressure palsy. And the frequency of ANy exercise MUST be tailored to the individual and what s/he can tolerate.
A positive result from steroid injection, 4 facet blocks L3-L4. Last September I had a bad respiratory infection which prompted the use of a large dose of oral prednisone. There was no respiratory improvement, but in 3 days there was marked neurological improvement and reduction in pain. Now the use of steroids could be rationalized.
Ed. Note: A combined response from two HNPP researchers :'The tricky thing about steroids is to separate out the energy boost which people get when they first start taking them from a true therapeutic effect. Even monthly doses of steroids can result in osteoporosis and osteonecrosis although the skin changes, weight gain, fluid retention, diabetes, hypertension bunch of other side effects so people should be careful with these medications. The bottom line is that I don't believe that the treatment is entirely safe and it is having no influence on the underlying disease so I would neither use nor recommend it.'
Vioxx with Neurontin for pain relief
I have been having HNPP type symptoms since I was about 18 mos. I was a "toe" walker, bilateral boutonniere deformities and claw toes with Pes planus (flat feet). I started taking Vioxx about 2 years ago for Osteoarthritus from multiple ankle sprains from the clumsiness that accompanies the numbness. Finally a neurologist put me on Neurotin for carpal tunnel (bilateral) in June of 01. The relief from the pain was almost immediate. I believe the anti-inflammatory drug Vioxx with the Neurotin (very Low dose 400mg 1 time a day) has given me almost complete relief. The numbness in my feet went away and I can live a very normal life. I hope others will try this therapy and maybe we can establish some better treatments with less side effects. Sam, Virginia Beach, USA.
Last updated: 8/01
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