Guest guest Posted April 26, 2000 Report Share Posted April 26, 2000 Helen, I've been thinking of you. I really hope the HBOT and Flagyl do the job and you r suffering through the treatment is not in vain. You know how awful the Flagyl was for me at the beginning but it really, really paid off. You probably already know this - taking Flagyl in the middle of a heavy (meat and potatoes type of meal) meal usually helps the " tummy problems. " Fresh vegetables and fruit exacerbated the problems. I normally don't eat this way at all and I know that it's not healthy in the long run but it really helped. I have to start trying to lose some of the weight I gained from that period. Happy Spring, beth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2000 Report Share Posted April 26, 2000 Helen, I've been thinking of you. I really hope the HBOT and Flagyl do the job and you r suffering through the treatment is not in vain. You know how awful the Flagyl was for me at the beginning but it really, really paid off. You probably already know this - taking Flagyl in the middle of a heavy (meat and potatoes type of meal) meal usually helps the " tummy problems. " Fresh vegetables and fruit exacerbated the problems. I normally don't eat this way at all and I know that it's not healthy in the long run but it really helped. I have to start trying to lose some of the weight I gained from that period. Happy Spring, beth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2000 Report Share Posted May 20, 2000 Hi Helen, Good to hear from you. You sound a little better than you did a couple of weeks ago. I'm also on Flagyl...makes me sleepy, but I had a few days where my insides weren't shaking from fatigue, so I think it may be helping a little. If this doesn't work, I don't know what to do...we re-appealed for IV abx, but so far no news. Anybody who is shopping for health insurance, DON'T GET OXFORD. Feel Better, Joan LI NY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2000 Report Share Posted May 21, 2000 Hi Joan and everyone, Thank you for writing to me. I am better than I was, thank God. I definitely went through hell after HBOT but now I feel at least more human. I am so sorry to hear about Oxford. We have had so many hard times with insurance companies (my husband changed jobs) and I know what a horror it can be. I figure I'll die poor but who cares. " Stuff " isn't making me better is it? We all have a different perspective because we all have gone through hell with these diseases so all that matters is feeling better. We have each other too as Reid always says (sorry you are so sick Reid--hang in there old pal!!)I will pray that flagyl helps. Don't give up hope because I took flagyl a year ago and it didn't do much but now it seems to be shaking things up a lot and making me have herxes. I didn't want to make this too long but I do want to tell all of you that I started to take Questran (the powder that is made to reduce cholesterol) For Lyme it is supposed to take neurotoxins out of you making you feel better. It is very constipating and very hard to take around oral meds because you have to take it an hour before meds or 3 hours after. I have always done what my doctor says to do but I just needed a break from being tied down with the next thing. I will try again after my next visit and will let all of you know if it helps OK? well, hang in there Joan. God knows I have a lot of experience with many a bleak and hopeless day but I am telling all of you------if a horrendous case like mine can feel better there is hope for you. I am back to help encourage all of you when you need it. Love, Helen in Robbinsville WHO lives in Robbinsville NJ??????? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2000 Report Share Posted May 21, 2000 i was wondering about the oxygen tanks to be used instead of the HBOT...i read about it in the lyme book.....'coping with lyme disease by denise lang.... thanks cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2000 Report Share Posted May 21, 2000 Hi Cheryl, I am not familiar with the oxygen tanks. I can't imagine how that would work. Wish I could help more. I was in a monochamber (one person lays in it) but there are multichamber units and you sit or recline and a hood is put over your head that delivers the O2 at the level below sealevel you need. DR Fife wrote the protocols and I know he has a website. Love, Helen in Robbinsville Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2000 Report Share Posted May 22, 2000 As far as I know, HBOT is still considered experimental for treating Lyme....it's not an accepted procedure reimbursable by Medicare or private medical insurance, as is the case for something like diabetic wounds that heal poorly or chronic refractory osteomyelitis....I've had 40 HBOT for the latter, but I still have something (Lyme?) going on... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2006 Report Share Posted August 11, 2006 Anita Sounds like some pretty wonderful and exciting things are taking place at your house! Congratulations on the success. I think that is totally awesome that you continue to see even more improvements since finishing. Please do keep posting on his progress. Sheresa > > Dear listmates, > > Below is an update on our recent HBOT experience. Once again, I'd > like to say that I'm glad to be back (and happy to have findished > wading through hundreds of posts I missed: is the pace picking up > here or is it just me?) > > HBOT update (written August 8, 2006): > > We did a total of 42 one hour dives at 100% oxygen and 1.5 ATA over > a period of 4.5 weeks. For 4 of the 5 days of the week, we would > dive twice. On Wednesdays, we dove only once. My son, who is > 3.5, hated the hood. With one certain technician, who listened to > my instructions and was extraordinarily attentive, placing and > removing the hood went quite smoothly. This wasn't always the case > with the other technicians, who were less understanding of the needs > of an autistic child. This part was frustrating, but once my son > was in the chamber, he was generally calm and would focus on the > movie playing outside the chamber. > > I chose to chelate during HBOT. Urine and fecal tests showed pretty > impressive pulls. My son weighs 35 pounds and I was dosing 12 mg of > ALA and 8 mg of DMSA every 3 hours. With that, we pulled aluminum > and nickel in the red; platinum, antimony, and lead in the yellow; > cadmium and bismuth in the very high green. Lead, at 18, was almost > 7 times higher than any other pull in the past. Prior to HBOT we'd > chelated about 37 rounds. > > I also chose to run a very low dose viral protocol during HBOT. I > was using only 2 Virastop a day and 2 scoops of Lauricidin a day. > For about a 4 day period, my son had what appeared to be a viral > rash around his mouth. > > The changes we saw were subtle. The first noticeable change was > improved sleep. My son began to sleep deeply and more. So did I, > for that matter. At the beginning, it wasn't uncommon for him to > fall asleep in the carseat after a dive, even if it was much too > early for his regular nap. We also saw improvements in his bowels; > however, these improvements would not last. Bowels would be good > Wednesday through Saturday, but the struggles would start again > Sunday and generally last until Tuesday. As I write this, it has > been 3 days since our last dive and the same problems have > returned. This has been an ongoing struggle for us. Our earlier > viral protocol helped, as have visits to the chiropractor, but > nothing helps permanently. > > My son seems to have had a bit of a growth spurt. He hasn't put on > weight, but grew a bit more than ½ an inch during the four weeks of > HBOT. Even his therapists commented on how much bigger he was > getting. > > We had one sudden and amazing day of language around dive 30. For > the first time, my son chose to carry around a soft toy animal and > when I told him it was a giraffe (a word he used to know but would > use only when playing computer) he looked at it carefully and > said " guvaff " . He then said it again, less tentatively, and ran to > me for a hug, which seemed to communicate his understanding of what > had just transpired. It was as if he really understood for the > first time that he could label something. That same day he uttered > about 7 or 8 other words. This burst lasted only the one day, but > we are seeing some little bit of language each day now, including a > sentence: " Car……go " when he wanted to leave a park. Also, today, > he signed his first sign, something we've been working on since a > couple weeks before HBOT. " More " was the sign. His receptive > language seems improved also, and he can understand a couple simple > signs like " shoes " and " snack " . > > We've seen more affection towards us and today he hugged his SLP for > the first time. We've also seen much greater ability to deal with > frustration and a few new signs of humour. Therapy sessions with > the SLP and OT, which started just a few weeks prior to HBOT, are > going very well—a credit to the therapists and HBOT. > > I was more nervous about starting HBOT than any other intervention > I've tried. Something about having to trust someone else, I think. > But, I am very happy that we chose to go ahead with it. As all > parents, we were obviously hoping to see miracles but actually got > something more commonplace: subtle but very inspiring and MUCH > appreciated changes that we hope will continue. I intend to start > HBOT again in early September (40 dives over 4 weeks) in an effort > to build on what we've seen so far. I plan to chelate again as I > did before (3.5 on/3.5 off) and run a low dose viral protocol for > the duration, as these two interventions seem to be appropriate for > my son during HBOT. > > Added August 11: We continue to see small improvements. Today my > son helped dh put a tricyle away. This has never happened before. > We're also seeing some pretty good face contact and a greater > awareness of hand gestures. I should mention that we're on a kind > of supplement break for now, awaiting ION test results. I'm not > sure how this drastic reduction in supping is impacting things, > other than making life much easier :-) > > > > Anita > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2006 Report Share Posted August 12, 2006 Hi Anita, HBOT is one of those things which I've also been hesitant to do. Probably for the same reason you mentioned. But your experience has me rethinking my reluctance. I'm thrilled for you and your family! Thanks for sharing. Orelindel > I was more nervous about starting HBOT than any other intervention > I've tried. Something about having to trust someone else, I think. > But, I am very happy that we chose to go ahead with it. As all > parents, we were obviously hoping to see miracles but actually got > something more commonplace: subtle but very inspiring and MUCH > appreciated changes that we hope will continue. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2006 Report Share Posted August 13, 2006 Thanks to everyone for your kind words on our HBOT progress (I'd like to thank you personally but I'm off again for some time). This morning my son drew on a magnetic pad for about half an hour, erasing it himself too. Small wonders :-)! About the precocious puberty. A growth spurt is not uncommon for kids doing HBOT from what I've read. This would likely be particularly true for kids who have fallen behind in terms of the trajectory they should have been on. My son would probably be one of those kids. He's not small, but he was a 9.5 pound baby and prior to his regression, he certainly seemed destined to be somewhere at the top of the growth charts. HBOT increased his appetite also, so that would account for some growth. Gratefully, Anita > > > > Anita, > > > > All this sounds good. I hope you keep making progress. > > > > You mentioned a " sudden growth spurt " . Have you ever tested him for > precocious puberty? High testosterone levels (for whatever reason) seem > to prevent traditional ASD treatments from working. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2010 Report Share Posted March 9, 2010 How wonderful! Thanks for the update! Warmest wishes, Barbara Barbara A. , M.S., CCC-SLP Executive Director/ Help Me Speak, LLC <http://www.helpmespeak.com/> http://www.helpmespeak.com (o) 410-442-9791 (f) 410-442-9783 2500 Wallington Way; Suite 103 Marriottsville, MD 21104 follow us on FaceBook: http://www.facebook.com/pages/Marriottsville-MD/Help-Me-Speak-LLC/1046288520 32 Call me with any questions about NutriiVeda! www.hms.myzrii.com From: [mailto: ] On Behalf Of anna_liisajansson Sent: Tuesday, March 09, 2010 7:59 PM Subject: [ ] HBOT update HI, We have now had 12hours of hbot and things are going great. Jack is such a little trooper, he doesn't mind being in the chamber at all. We are starting to notice a few small changes. Usually it isn't until after 20hours that things start to noticable change. My husband said my name to me on the phone today, and Jack from the back seat yelled out " mama! " He is very alert and has much more energy. He is vocalizing more and playing with his mouth. We are still on the SCD diet however we are still taking NV. It is not SCD legal, however, he is tolerating it quite well and I feel it has helped heal his gut. Everyday is exciting, he is doing new things all the time. I know we are on a long path but I am glad to be well supported on it! Jack's doctor has him on some homeopathic drops which I beleive are also helping. Anni Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2010 Report Share Posted March 9, 2010 It is so great and enjoyable to see new things come out of our kids. That's how it's supposed to be! Thanks for keeping us informed-it sounds great. Cheryl > > HI, > We have now had 12hours of hbot and things are going great. Jack is such a little trooper, he doesn't mind being in the chamber at all. We are starting to notice a few small changes. Usually it isn't until after 20hours that things start to noticable change. My husband said my name to me on the phone today, and Jack from the back seat yelled out " mama! " He is very alert and has much more energy. He is vocalizing more and playing with his mouth. We are still on the SCD diet however we are still taking NV. It is not SCD legal, however, he is tolerating it quite well and I feel it has helped heal his gut. Everyday is exciting, he is doing new things all the time. I know we are on a long path but I am glad to be well supported on it! Jack's doctor has him on some homeopathic drops which I beleive are also helping. > Anni > Quote Link to comment Share on other sites More sharing options...
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