Guest guest Posted December 10, 2009 Report Share Posted December 10, 2009 Hi , I'm glad you keep a close eye on your scoliosis. Do you see a doctor who specializes in scoliosis? I too have a large curve mine is a 58 c-curve after harrington rod surgery. Do you have a s or c-curve? Deronda From: <amandad40@...>Subject: [ ] Re:Hello Date: Wednesday, December 9, 2009, 10:12 AM Hi,I just don't feel as straight as I was after surgery. Also I dont have any instrumentation in as I had it out 4 years after surgery because I pulled the bar out of the clip.In some ways am glad its not in there cause if I do need another operation then at least they dont have to try and get it all out.I guess i worry about it alot aswell cause it is still a large curve any movement would be very noticeable.I am 34 and am thinking of having kids in the next 2 years I just hope that this doesnt effect it as I can see a number of posts saying that pregnacy was very hard and made there backs worse.> > > > >> > > > > ,> > > > > I too suffered very severe depression.. I loved my old body, > > > crooked > > > > and all> > > > > and have a very tough time adjusting to my new one but I am > > > adjusting.> > > > > I am 17 months out and I can tell you, it does get better. You > > > start > > > > to feel> > > > > a bit better on a daily basis. You start doing more. One day you > > > > realize that> > > > > it was a long haul but you are no longer going 10 miles an hour, > > > you > > > > are going> > > > > 50. One day you will do the speed limit. IT TAKES TIME to heal, > > > > > emotionally, mentally> > > > > and physically. If it helps, read my story, you will be able to > > > > relate. > > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2009 Report Share Posted December 14, 2009 Hi , My hump has definetly got much larger over the years, I always wear baggy hooded tops. I am fused from T5 to L1 with harrington rod. The surgery was in 1978 within a couple of years I kept going back because I could notice a change in the hump but they said the xrays showed the curve was the same. It wasn't until I was 30 that I went to a revision specialist who said my spine had a lot of rotation. The curve is still about 58, I think there has been a few degrees progression below fusion, I am fused T5 to L1. You said your curve was 60 degress what was it before surgery and where is your fusion. Deronda From: <amandad40@...>Subject: [ ] Re:Hello Date: Friday, December 11, 2009, 6:01 PM Hi Deronda,I have a C curve like yours. How do you feel about your curve? Do you feel it has gotten worse over the years and are you scared that it might progress?> > > > > >> > > > > > ,> > > > > > I too suffered very severe depression. I loved my old body, > > > > crooked > > > > > and all> > > > > > and have a very tough time adjusting to my new one but I am > > > > adjusting.> > > > > > I am 17 months out and I can tell you, it does get better. You > > > > start > > > > > to feel> > > > > > a bit better on a daily basis. You start doing more. One day you > > > > > realize that> > > > > > it was a long haul but you are no longer going 10 miles an hour, > > > > you > > > > > are going> > > > > > 50. One day you will do the speed limit. IT TAKES TIME to heal, > > > > > > emotionally, mentally> > > > > > and physically. If it helps, read my story, you will be able to > > > > > relate. > > > > > >> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2009 Report Share Posted December 14, 2009 Hi Deronda, I had 2 curves before surgery 80 and 35 in an S shape. I have also had a castoplasty done to reduce the rib hump. This definately made my back look alot better and the hump now is not noticeable. U should think of having this done it takes about 3-4 weeks to recover but is worth it. I think these days they may be able to do it without opening the orginal scar. Are you ever going to think about have it redone to correct the derotation? Did you surgeon recommend anything to you? I have being doing pilates and this has helped settle my shoulder blade down that use to stick out a lot on the right. > > > > > > > > > > > > > > , > > > > > > > I too suffered very severe depression. I loved my old body, > > > > > crooked > > > > > > and all > > > > > > > and have a very tough time adjusting to my new one but I am > > > > > adjusting. > > > > > > > I am 17 months out and I can tell you, it does get better. You > > > > > start > > > > > > to feel > > > > > > > a bit better on a daily basis. You start doing more. One day you > > > > > > realize that > > > > > > > it was a long haul but you are no longer going 10 miles an hour, > > > > > you > > > > > > are going > > > > > > > 50. One day you will do the speed limit. IT TAKES TIME to heal, > > > > > > > emotionally, mentally > > > > > > > and physically. If it helps, read my story, you will be able to > > > > > > relate. > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2009 Report Share Posted December 14, 2009 From: <amandad40@...>Subject: [ ] Re:Hello Date: Monday, December 14, 2009, 1:16 PMHi , I would like to have a thoracoplasty done if possible when I have revision. In adults the ribs do not grow back and I was told you can can residual pain. In 1978 when I had my harrington rod surgery thoracoplasty wasn't even mentioned. How old were you when you had it done? I've only chatted with one member here Bonnie Stone who had it done as an adult and had great success. If there are others out there who had it done as an adult please chime in. I'm interested in learning more. Deronda Hi Deronda,I had 2 curves before surgery 80 and 35 in an S shape. I have also had a castoplasty done to reduce the rib hump. This definately made my back look alot better and the hump now is not noticeable. U should think of having this done it takes about 3-4 weeks to recover but is worth it. I think these days they may be able to do it without opening the orginal scar.Are you ever going to think about have it redone to correct the derotation? Did you surgeon recommend anything to you?I have being doing pilates and this has helped settle my shoulder blade down that use to stick out a lot on the right.> > > > > > >> > > > > > > ,> > > > > > > I too suffered very severe depression. I loved my old body, > > > > > crooked > > > > > > and all> > > > > > > and have a very tough time adjusting to my new one but I am > > > > > adjusting.> > > > > > > I am 17 months out and I can tell you, it does get better. You > > > > > start > > > > > > to feel> > > > > > > a bit better on a daily basis. You start doing more. One day you > > > > > > realize that> > > > > > > it was a long haul but you are no longer going 10 miles an hour, > > > > > you > > > > > > are going> > > > > > > 50. One day you will do the speed limit. IT TAKES TIME to heal, > > > > > > > emotionally, mentally> > > > > > > and physically. If it helps, read my story, you will be able to > > > > > > relate. > > > > > > >> > > > > >> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2009 Report Share Posted December 14, 2009 Hi there...My doctor asked me if I wanted it and said no..I was too nervous about breaking my ribs and the after math of the healing process with the revision...He said he didn't blame me! In a message dated 12/14/2009 12:08:36 P.M. Eastern Standard Time, derondaharmon@... writes: From: <amandad40hotmail>Subject: [ ] Re:Hello Date: Monday, December 14, 2009, 1:16 PMHi , I would like to have a thoracoplasty done if possible when I have revision. In adults the ribs do not grow back and I was told you can can residual pain. In 1978 when I had my harrington rod surgery thoracoplasty wasn't even mentioned. How old were you when you had it done? I've only chatted with one member here Bonnie Stone who had it done as an adult and had great success. If there are others out there who had it done as an adult please chime in. I'm interested in learning more. Deronda Hi Deronda,I had 2 curves before surgery 80 and 35 in an S shape. I have also had a castoplasty done to reduce the rib hump. This definately made my back look alot better and the hump now is not noticeable. U should think of having this done it takes about 3-4 weeks to recover but is worth it. I think these days they may be able to do it without opening the orginal scar.Are you ever going to think about have it redone to correct the derotation? Did you surgeon recommend anything to you?I have being doing pilates and this has helped settle my shoulder blade down that use to stick out a lot on the right.> > > > > > >> > > > > > > ,> > > > > > > I too suffered very severe depression. I loved my old body, > > > > > crooked > > > > > > and all> > > > > > > and have a very tough time adjusting to my new one but I am > > > > > adjusting.> > > > > > > I am 17 months out and I can tell you, it does get better. You > > > > > start > > > > > > to feel> > > > > > > a bit better on a daily basis. You start doing more. One day you > > > > > > realize that> > > > > > > it was a long haul but you are no longer going 10 miles an hour, > > > > > you > > > > > > are going> > > > > > > 50. One day you will do the speed limit. IT TAKES TIME to heal, > > > > > > > emotionally, mentally> > > > > > > and physically. If it helps, read my story, you will be able to > > > > > > relate. > > > > > > >> > > > > >> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2009 Report Share Posted December 15, 2009 Hi Deronda, I was 24 when I had it done. I have never had any pain in the ribs afterwards. The procedure itself was fine and if u are having a revision they could use the bone to fuse your spine instead of harvesting it off your hip which I hate. Are you going to have a revision? If so when and what have the surgeons told you about the risks and what kind of outcome you can expect? > > > > > > > > > > > > > > > > , > > > > > > > > I too suffered very severe depression. I loved my old body, > > > > > > crooked > > > > > > > and all > > > > > > > > and have a very tough time adjusting to my new one but I am > > > > > > adjusting. > > > > > > > > I am 17 months out and I can tell you, it does get better. > You > > > > > > start > > > > > > > to feel > > > > > > > > a bit better on a daily basis. You start doing more. One > day you > > > > > > > realize that > > > > > > > > it was a long haul but you are no longer going 10 miles an > hour, > > > > > > you > > > > > > > are going > > > > > > > > 50. One day you will do the speed limit. IT TAKES TIME to > heal, > > > > > > > > emotionally, mentally > > > > > > > > and physically. If it helps, read my story, you will be able > to > > > > > > > relate. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2009 Report Share Posted December 16, 2009 , Did the doctor tell you that your ribs would grow back at age 24? I have a doctors appointment Monday and will then know more. Deronda From: <amandad40@...>Subject: [ ] Re:Hello Date: Tuesday, December 15, 2009, 10:33 AM Hi Deronda,I was 24 when I had it done. I have never had any pain in the ribs afterwards. The procedure itself was fine and if u are having a revision they could use the bone to fuse your spine instead of harvesting it off your hip which I hate.Are you going to have a revision? If so when and what have the surgeons told you about the risks and what kind of outcome you can expect?> > > > > > > >> > > > > > > > ,> > > > > > > > I too suffered very severe depression. I loved my old body, > > > > > > crooked > > > > > > > and all> > > > > > > > and have a very tough time adjusting to my new one but I am > > > > > > adjusting.> > > > > > > > I am 17 months out and I can tell you, it does get better. > You > > > > > > start > > > > > > > to feel> > > > > > > > a bit better on a daily basis. You start doing more. One > day you > > > > > > > realize that> > > > > > > > it was a long haul but you are no longer going 10 miles an > hour, > > > > > > you > > > > > > > are going> > > > > > > > 50. One day you will do the speed limit. IT TAKES TIME to > heal, > > > > > > > > emotionally, mentally> > > > > > > > and physically. If it helps, read my story, you will be able > to > > > > > > > relate. > > > > > > > >> > > > > > >> > > > > >> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2009 Report Share Posted December 16, 2009 Hi Deronda... The ribs will grow back at any age, as long as the procedure is done correctly. The sheath that coats the ribs has to be kept intact. Regards, > > > > > > > > > > > > > > > > > > , > > > > > > > > > I too suffered very severe depression. I loved my old body, > > > > > > > crooked > > > > > > > > and all > > > > > > > > > and have a very tough time adjusting to my new one but I am > > > > > > > adjusting. > > > > > > > > > I am 17 months out and I can tell you, it does get better. > > You > > > > > > > start > > > > > > > > to feel > > > > > > > > > a bit better on a daily basis. You start doing more. One > > day you > > > > > > > > realize that > > > > > > > > > it was a long haul but you are no longer going 10 miles an > > hour, > > > > > > > you > > > > > > > > are going > > > > > > > > > 50. One day you will do the speed limit. IT TAKES TIME to > > heal, > > > > > > > > > emotionally, mentally > > > > > > > > > and physically. If it helps, read my story, you will be able > > to > > > > > > > > relate. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2009 Report Share Posted December 16, 2009 Hi, To be honest he never mentioned it, he didnt think it was a problem. I did just have an xray a few weeks ago and I cant remember if the ribs were there r not.Feeling my back I would say not but I dont know. I have an older xray at home I'll dig it out and have a look. The only thing a surgeon said to me was it does reduce your lung capacity by about 10% but u wont notice that which I dont but if I was to have revision it would be reduced to 25% which I would notice. However the last surgeon I saw didnt mention this when he talked about revision. Are you just going to talk about teh castoplasty or are u thinking about having a whole revision done? > > > > > > > > > > > > > > > > > > , > > > > > > > > > I too suffered very severe depression. I loved my old body, > > > > > > > crooked > > > > > > > > and all > > > > > > > > > and have a very tough time adjusting to my new one but I am > > > > > > > adjusting. > > > > > > > > > I am 17 months out and I can tell you, it does get better. > > You > > > > > > > start > > > > > > > > to feel > > > > > > > > > a bit better on a daily basis. You start doing more. One > > day you > > > > > > > > realize that > > > > > > > > > it was a long haul but you are no longer going 10 miles an > > hour, > > > > > > > you > > > > > > > > are going > > > > > > > > > 50. One day you will do the speed limit. IT TAKES TIME to > > heal, > > > > > > > > > emotionally, mentally > > > > > > > > > and physically. If it helps, read my story, you will be able > > to > > > > > > > > relate. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2009 Report Share Posted December 17, 2009 HI Deronda, I don't know whether my rib grew back, but I know I got a permanent correction of the rib hump because of the thorcopasty Dr. Boachie did during my revision surgery. Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2009 Report Share Posted December 17, 2009 What is a " castoplasty'? Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2009 Report Share Posted December 17, 2009 Costoplasty = what Brits call thoracoplasty. > > What is a " castoplasty'? > > Bonnie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2009 Report Share Posted December 17, 2009 Hi Bonnie, Thats great I will ask Dr. Bridwell more about thorocaplasty Monday. Deronda From: Bonnie Stone <bonnie@...>Subject: [ ] Re:Hello Date: Thursday, December 17, 2009, 1:43 AM HI Deronda,I don't know whether my rib grew back, but I know I got a permanent correction of the rib hump because of the thorcopasty Dr. Boachie did during my revision surgery.Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2010 Report Share Posted March 4, 2010 it should all be herehttp://www.low dose naltrexone.org/index.htmi cried when i read your postcyndiOn Mar 4, 2010, at 3:12 AM, moranclan07 wrote:Does anyone know how I can get the most official information from the Penn study by Dr. Jill.....is there a way I could get her to send me info,,,or email my GI,,,,my son is a wonderful example,,,but I had to lie and pretend to give him Asacol for a year,,,,then when the biopsy came back ,,,I cried ,,hugged her and told her...that I had not been giving him it. She wants all the information on it,,,but I am sure she is thinking I am a non-compliant mom and she can never trust me again. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2010 Report Share Posted March 8, 2010 Although recently-diagnosed prostate cancer patients who have not received other therapies appear to do well on LDN, patients with prostate cancer who have already been treated with hormone-related therapies, including testosterone-blocking drugs and PC-Spes, have not responded to LDN. Prostate Cancer. M. is a 59-year-old man with prostate cancer, diagnosed with a biopsy and CT scan in September 1999. With no treatment other than low dose naltrexone, after 4 months on LDN his PSA dropped from 6.3 to 3.4. A special ultrasound, performed after 6 months on LDN, showed a 65% shrinkage of the tumor. His PSA remained stable over the following 16 months when he became ill and died of what may have been a cerebrovascular accident. http://www.low dose naltrexone.org/ldn_and_cancer.htm > > is there any information available for prostate cancer and ldn ? thanks for any response > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2010 Report Share Posted March 8, 2010 By " other therapies " does this include radiation?...I thought I read somewhere it does not, tho the following sentence does suggest that only hormonal, and PC-Spec applies. art_ldn wrote: > Although recently-diagnosed prostate cancer patients who have not > received other therapies appear to do well on LDN, patients with > prostate cancer who have already been treated with hormone-related > therapies, including testosterone-blocking drugs and PC-Spes, have not > responded to LDN. > > Prostate Cancer. M. is a 59-year-old man with prostate cancer, > diagnosed with a biopsy and CT scan in September 1999. With no > treatment other than low dose naltrexone, after 4 months on LDN his > PSA dropped from 6.3 to 3.4. A special ultrasound, performed after 6 > months on LDN, showed a 65% shrinkage of the tumor. His PSA remained > stable over the following 16 months when he became ill and died of > what may have been a cerebrovascular accident. > > http://www.low dose naltrexone.org/ldn_and_cancer.htm > <http://www.low dose naltrexone.org/ldn_and_cancer.htm> > > > > > > is there any information available for prostate cancer and ldn ? > thanks for any response > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2010 Report Share Posted April 11, 2010 The list of herx helpers that I've gleaned from this list and others. Can't vouch myself for all of them -- this list reflects group experience. What you're describing is pretty classic herx. You may want to talk to your doctor about getting some pain meds your son can take when it's just too much -- there's no therapeutic advantage to hurting any more than you have to. Also: ask if you can pulse drugs -- say, five days on, two days off -- to get him some rest time; or else cut back on the doses for a day or two when things get too intense to handle. It's a marathon, not a sprint. Sara SUPPLEMENTS Quercetin (1000 mg with every abx dose) Activated charcoal supplements Magnesium citrate supplements + B6 Molybdenum 50mg/day Vitamin C Sarsparilla drops Chitosan Benadryl Everyday Detox tea from Traditional Medicinals Wobenzyme enzymes Burbur drops -- 5 drops in water every 10 mins TREATMENTS Epsom salt baths (hot as you can stand) FIR saunas Lots of water (some swear by lemon water) Massage Avoid additional B12 until things calm down HEEL Detox Kit PRESCRIPTIONS Singulair Actos On Apr 9, 2010, at 11:42 10AM, puuuurfect wrote: > My son has been diagnosed with neurolyme. I found an ID doctor that is willing to think outside the box and treat my son. I think he is doing his best, but he admits he's no expert. He has my son on a pump using penicillin G-K 18 million units every 24 hours. He is Negative for co-infections, but has mycoplasma. It's been 10 weeks and there are some noticeable changes. He looks healthy again and is gaining weight, but the mental symptoms are still horrible. After the 4 week he started to herx. > He has been in chronic pain day and night. Horrible body aches,and headaches. The doctor is making sure his system is OK, but thinks he cant get any better. What to do? Have any of you experienced this kind of herx? Please help! > PS. He was on rocphin, but ended up in the ER due to an allergic reaction. I also cant afford a lyme literate doctor. > Thank You > > > > ------------------------------------ > > Lyme Disease News continually updated from thousands of sources around the > net: http://www.topix.net/health/lyme-disease > > MedWorm: The latest items on: Lyme Disease > http://tinyurl.com/23dgy8 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2010 Report Share Posted April 11, 2010 Thank You. I think the penicillin is a waist of time. If it doesn't kill the little demons why bother. My sons life has been destroyed. I asked the doctor for bicillin shots, but he thinks thats no good! HELP I CANT STAND TO WATCH MY SON SUFFER ANY LONGER. PLEASE. > > > My son has been diagnosed with neurolyme. I found an ID doctor that is willing to think outside the box and treat my son. I think he is doing his best, but he admits he's no expert. He has my son on a pump using penicillin G-K 18 million units every 24 hours. He is Negative for co-infections, but has mycoplasma. It's been 10 weeks and there are some noticeable changes. He looks healthy again and is gaining weight, but the mental symptoms are still horrible. After the 4 week he started to herx. > > He has been in chronic pain day and night. Horrible body aches,and headaches. The doctor is making sure his system is OK, but thinks he cant get any better. What to do? Have any of you experienced this kind of herx? Please help! > > PS. He was on rocphin, but ended up in the ER due to an allergic reaction. I also cant afford a lyme literate doctor. > > Thank You > > > > > > > > ------------------------------------ > > > > Lyme Disease News continually updated from thousands of sources around the > > net: http://www.topix.net/health/lyme-disease > > > > MedWorm: The latest items on: Lyme Disease > > http://tinyurl.com/23dgy8 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2010 Report Share Posted April 11, 2010 Hi Puurfect,  Consider incorporating hyperbaric oxygen. The oxygen will kill the spirochete and boost the immune system at the same time. It also crosses the BBB and take take more anitbiotics with it. Children seem to do very well with HBOT now that oxygen is naturally occuring in the body... Sudylo RN/CHT www.juliashbot.com From: puuuurfect <erikasplace@...> Subject: [ ] Hello Date: Friday, April 9, 2010, 2:42 PM  My son has been diagnosed with neurolyme. I found an ID doctor that is willing to think outside the box and treat my son. I think he is doing his best, but he admits he's no expert. He has my son on a pump using penicillin G-K 18 million units every 24 hours. He is Negative for co-infections, but has mycoplasma. It's been 10 weeks and there are some noticeable changes. He looks healthy again and is gaining weight, but the mental symptoms are still horrible. After the 4 week he started to herx. He has been in chronic pain day and night. Horrible body aches,and headaches. The doctor is making sure his system is OK, but thinks he cant get any better. What to do? Have any of you experienced this kind of herx? Please help! PS. He was on rocphin, but ended up in the ER due to an allergic reaction. I also cant afford a lyme literate doctor. Thank You Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2010 Report Share Posted April 11, 2010 A word from the evidence-based side of the community -- there is no evidence that HBOT can cure Lyme. In fact, Dr. Schaller proclaims it a rather dismal failure. More here: <http://www.publichealthalert.org/Articles/jamesschaller/18_reasons_lyme_treatme\ nts_fail.htm> Sara On Apr 11, 2010, at 8:39 17AM, JULIA SUDYLO wrote: > Hi Puurfect, > > Consider incorporating hyperbaric oxygen. The oxygen will kill the spirochete and boost the immune system at the same time. It also crosses the BBB and take take more anitbiotics with it. > Children seem to do very well with HBOT now that oxygen is naturally occuring in the body... > > Sudylo RN/CHT > > www.juliashbot.com > > > > > > From: puuuurfect <erikasplace@...> > Subject: [ ] Hello > > Date: Friday, April 9, 2010, 2:42 PM > > > > > > > My son has been diagnosed with neurolyme. I found an ID doctor that is willing to think outside the box and treat my son. I think he is doing his best, but he admits he's no expert. He has my son on a pump using penicillin G-K 18 million units every 24 hours. He is Negative for co-infections, but has mycoplasma. It's been 10 weeks and there are some noticeable changes. He looks healthy again and is gaining weight, but the mental symptoms are still horrible. After the 4 week he started to herx. > He has been in chronic pain day and night. Horrible body aches,and headaches. The doctor is making sure his system is OK, but thinks he cant get any better. What to do? Have any of you experienced this kind of herx? Please help! > PS. He was on rocphin, but ended up in the ER due to an allergic reaction. I also cant afford a lyme literate doctor. > Thank You > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2010 Report Share Posted April 11, 2010 If your son is herxing, the penicillin is indeed working. Also: there's considerable disagreement between LLMDs as to whether IM or IV drugs are actually better than orals. Bicillin is fine, but orals can be just as good. The most important thing, though, is to make sure that all three forms of the Lyme bug are getting addressed. Penicillin will kill spirochetes; but it won't touch L-forms (you need macrolides for that) or cysts (which are killed by Flagyl and anti-fungals). The standard of care in Lyme is to treat all three at once. Lyme can switch from one form to another within a few minutes, so you need to create conditions where they can run, but they can't hide. Hitting them with penicillin alone will kill some of them. The rest will just turn into cysts, and wait it out until he stops taking the drugs. Herx is hell to watch -- and there's a growing suspicion among some Lyme patients that it may create long-term damage of its own. So it's very important to manage this by using the methods listed below. If those don't work, reduce dosages or take breaks (with your doctor's supervision) until your son gets back to normal. There's a level of herx that's annoying but tolerable -- that's what you're shooting for. Sara On Apr 11, 2010, at 12:35 38AM, puuuurfect wrote: > Thank You. I think the penicillin is a waist of time. If it doesn't kill the little demons why bother. My sons life has been destroyed. I asked the doctor for bicillin shots, but he thinks thats no good! > HELP I CANT STAND TO WATCH MY SON SUFFER ANY LONGER. PLEASE. > > >> >>> My son has been diagnosed with neurolyme. I found an ID doctor that is willing to think outside the box and treat my son. I think he is doing his best, but he admits he's no expert. He has my son on a pump using penicillin G-K 18 million units every 24 hours. He is Negative for co-infections, but has mycoplasma. It's been 10 weeks and there are some noticeable changes. He looks healthy again and is gaining weight, but the mental symptoms are still horrible. After the 4 week he started to herx. >>> He has been in chronic pain day and night. Horrible body aches,and headaches. The doctor is making sure his system is OK, but thinks he cant get any better. What to do? Have any of you experienced this kind of herx? Please help! >>> PS. He was on rocphin, but ended up in the ER due to an allergic reaction. I also cant afford a lyme literate doctor. >>> Thank You >>> >>> >>> >>> ------------------------------------ >>> >>> Lyme Disease News continually updated from thousands of sources around the >>> net: http://www.topix.net/health/lyme-disease >>> >>> MedWorm: The latest items on: Lyme Disease >>> http://tinyurl.com/23dgy8 >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2010 Report Share Posted April 11, 2010 For neuro borreliosis nothing works better than IV meds...I tried orals for 8 months and switiched to IV meds and it made a huge difference. Personal experience...I also tried some meds that have not been used extensively... > Thank You. I think the penicillin is a waist of time. If it doesn't kill the little demons why bother. My sons life has been destroyed. I asked the doctor for bicillin shots, but he thinks thats no good! > HELP I CANT STAND TO WATCH MY SON SUFFER ANY LONGER. PLEASE. > > >> >>> My son has been diagnosed with neurolyme. I found an ID doctor that is willing to think outside the box and treat my son. I think he is doing his best, but he admits he's no expert. He has my son on a pump using penicillin G-K 18 million units every 24 hours. He is Negative for co-infections, but has mycoplasma. It's been 10 weeks and there are some noticeable changes. He looks healthy again and is gaining weight, but the mental symptoms are still horrible. After the 4 week he started to herx. >>> He has been in chronic pain day and night. Horrible body aches,and headaches. The doctor is making sure his system is OK, but thinks he cant get any better. What to do? Have any of you experienced this kind of herx? Please help! >>> PS. He was on rocphin, but ended up in the ER due to an allergic reaction. I also cant afford a lyme literate doctor. >>> Thank You >>> >>> >>> >>> ------------ --------- --------- ------ >>> >>> Lyme Disease News continually updated from thousands of sources around the >>> net: http://www.topix. net/health/ lyme-disease >>> >>> MedWorm: The latest items on: Lyme Disease >>> http://tinyurl. com/23dgy8 >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2010 Report Share Posted April 11, 2010 Hi ,  I can understand where you are coming from. You are looking for a cure for lyme and I must in part agree with Dr Schaller. HBOT will not cure lyme,,, It will however heal damage that has been done by lyme and give you a better quality of life. Something that no antibiotic alone can do.  To the best of my knowledge no one has found a cure for lyme only treatments.  Kind Regards,  Sudylo RN/CHT www.juliashbot.com > > > From: puuuurfect <erikasplace@ sbcglobal. net> > Subject: [ ] Hello > @group s.com > Date: Friday, April 9, 2010, 2:42 PM > > > > > > > My son has been diagnosed with neurolyme. I found an ID doctor that is willing to think outside the box and treat my son. I think he is doing his best, but he admits he's no expert. He has my son on a pump using penicillin G-K 18 million units every 24 hours. He is Negative for co-infections, but has mycoplasma. It's been 10 weeks and there are some noticeable changes. He looks healthy again and is gaining weight, but the mental symptoms are still horrible. After the 4 week he started to herx. > He has been in chronic pain day and night. Horrible body aches,and headaches. The doctor is making sure his system is OK, but thinks he cant get any better. What to do? Have any of you experienced this kind of herx? Please help! > PS. He was on rocphin, but ended up in the ER due to an allergic reaction. I also cant afford a lyme literate doctor. > Thank You > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2010 Report Share Posted April 12, 2010 > > Dear Bee, >  >  I've been on the program for 8 months and I am feeling wonderful!!!  I still have ring worm on my race, and sometimes I can feel it moving?? The ring worm is right between my eyes and it moves down my nose and sometimes towards my eyes? Have you heard anything like this before? I think it moves more often when I'm getting my period. +++Hi . Yes, it is common for skin issues like ring worm to move, or change, or get larger, etc. because they are toxins coming out, and toxins move around. Bee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2010 Report Share Posted April 12, 2010 On a further note I don't believe there is evidence that anything actually cures Lyme. The best is to find a regimen that can be used indefinitely to keep it in remission! www.lyme-resource.com You can lead a person to a fact, but you can't make them think! - > [ ] Hello > > > > Date: Friday, April 9, 2010, 2:42 PM > > > > > > > > > > > > > > My son has been diagnosed with neurolyme. I found an ID > doctor that is willing to think outside the box and treat my > son. I think he is doing his best, but he admits he's no > expert. He has my son on a pump using penicillin G-K 18 > million units every 24 hours. He is Negative for > co-infections, but has mycoplasma. It's been 10 weeks and > there are some noticeable changes. He looks healthy again and > is gaining weight, but the mental symptoms are still > horrible. After the 4 week he started to herx. > > He has been in chronic pain day and night. Horrible body > aches,and headaches. The doctor is making sure his system is > OK, but thinks he cant get any better. What to do? Have any > of you experienced this kind of herx? Please help! > > PS. He was on rocphin, but ended up in the ER due to an > allergic reaction. I also cant afford a lyme literate doctor. > > Thank You > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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