Posted by Margi on October 30, 1998 at 11:47:49:
In Reply to: READ THIS!! Fellow sufferers, we're on to something! posted by Jerry on October 27, 1998 at 04:18:11:
Hi Jerry- thank you so much for your suggestion, my husband has been a CH (undiagnosed) sufferer for 20 years and I have been going through it with him for the last 13 of those years. FINALLY, we have confirmation that he is not alone and that he doesn't need to keep being a lab rat for all the medical doctors who haven't a clue. We tried the water therapy last night, combined with a couple hits of pure oxygen and he had his first pain free night in weeks. Actually got some sleep for a change. We have welding tools and just used that o2 tank but today i am looking into renting a proper medical 02 tank. Can't find a doctor to prescribe this yet, but I am going to continue pleading our case today. Any suggestions? Circumventing the medical community seems to be our only hope and we can't find anyone to treat him without horrific side-effects. We've tried Imitrex (he quickly built up an immunity), Ferrinol, Toradol, etc., etc. Also feverfew, ice, hot water for feet, sinus meds, - you know the drill. We're going to keep going with the water and oxygen. He is not chronic YET but this cycle has lasted almost 8 weeks - his longest yet.
Has anyone ever checked the demographics of the sufferers? Is there a trend of lifestyle that could be contributing to the affliction? Is there a chain letter somewhere that we all broke? There has to be some commonality in this group. Maybe if we can establish a cause, we can work together to find a cure. Jerry, if you think I'm on to something, I'd gladly contribute anything I could to get the ball rolling. I hate what my husband and all of you go through and I especially hate how the medical community just tries to shut us up by throwing pills at us, hoping we will go away. I had a medical doctor tell me last night over the phone that he wouldn't prescribe oxygen because it might be better treated with pain killers. WHO ARE THESE GUYS? Have they no compassion or belief that laypeople have brains and can help in their own diagnoses and treatments. AAAAAHHHH! I'm rambling, I know, but it's so nice to finally have found a place to vent.
I'll shut up now.
Look forward to hearing from you.