Guest guest Posted September 5, 2002 Report Share Posted September 5, 2002 Dear Matt, Hi! I am so sorry to hear about your daughter and your disappointing experience with HBOT. Do you happen to know the depth she was treated at? The reason I ask is because it would appear, based on limited experience, that the dystonic brain is extremely sensitive to HBOT. When I received treatment above 1.5ata, it greatly exacerbated my symptoms. When I am treated at 1.5 and below, I have wonderful carry over. Currently, I have many symptoms which have been kept at bay for over a year and a half. But, again, being hypersensitive, I can not get to 40 treatments at once. The longest I have been able to go is 33 before I start to show signs of toxicity. My last round of treatments, I could only go to 25. I believe I have had 115 treatments so far. I was to the point of being evaluated for an intrathecal baclofen pump, prior to HBOT. I have completely stopped one medication and cut my baclofen in half. The only doctor I know of in the US who has been successful in treating Dystonia is Dr. Harch in Louisiana. He was helpful in suggesting the correct level for a little girl with Dystonia in another country. I believe her depth was 1.27 ata. She too, seems to be hypersensitive to higher levels. A few days ago, I received an e-mail from a doctor in the UK who has treated several with Dystonia. He too speaks of lower levels. Anyway, I would be more than happy to speak with you. I will be sending you my phone number. Joanne ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! For your FREE software, visit: http://dl.www.juno.com/get/web/. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2004 Report Share Posted August 26, 2004 _bry8825@..._ (mailto:bry8825@...) Darin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2008 Report Share Posted March 19, 2008 Autoimmune Liver Disease Support Group Listbot I too had dystonia.mine was severe paradoxyl.legs and arms. I was on muscle relaxers (generic Flexeril) it helped but didn't stop it.but by then mine was very bad. After transplant it has gone! I am very happy about that. BUT, I do have throat problems.my ENT seems to think is from the ventilator after my transplant. I was intubated a long time as I had pneumonia and another lung disease. The only thing I can say about swallowing.is to take small mouthfulls. If you start to cramp up in the throat just stop for a minute until the esophagus cramp stops.that is what I do. You also may want to keep your throat lubricated.I have Tom's of Maine mouthwash for dry mouth and also a throat spray......... Nausea.I think we are all different in many of the symptoms.especially for those with PBC. Some people never have any nausea.other like myself.it was up and down. It was one of my first symptoms...it went away for years only to come back .and did this off and on throughout. As for itching I didn't itch until the last 3 years . But, others itcan start in the beginning.... How about the rest of you folks? Blessings, Joanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2008 Report Share Posted June 3, 2008 Do you not think DHEA and/or testosterone would also help? Bye Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2008 Report Share Posted June 6, 2008 DHEAEnergizesEnhances libidoRestores memoryRejuvenates the immune systemTames stressFights cancerPrevents heart diseaseReduces body & fatTherapy for menopauseHelps erase fine wrinklesHelps dry eyeNew hope for lupus suffersHeals burnsIncreases testosterone levels TestosteroneEnhances sex driveBuilds muscleElevates moodPrevents osteoporosisImproves memoryLower cholesterolProtects against heart diseaseReduces urinary obstruction from the prostate glandDecreases fasting blood glucose, plasma cholesterol, and triglyceridesDecreases diastolic blood pressureDecreases visceral adipose tissue (organ fat). Re: Dystonia Do you not think DHEA and/or testosterone would also help? Bye Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2008 Report Share Posted June 16, 2008 DHEA is the hormone the body makes the most. The brain needs it to function properly. Often chronic fatigue is caused by low levels of this. The Ring of Fire stress mode reduces DHEA significantly. More stress = less DHEA. Both adrenal pathways make it. Carbohydrates reduce it. Bye Sue Re: Dystonia Do you not think DHEA and/or testosterone would also help? Bye Sue Quote Link to comment Share on other sites More sharing options...
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