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Good Evening everyone,
My name is Martha and I believe I’ve had systemic scleroderma for many years but was officially dx 12 years ago by Dr. Trentham. I have been on and off this board for years and had been on the Harvard Protocol after seeing Dr. Trentham for about 2 years (12 years ago). My skin was not involved at that time and the minocycline helped with joint pain and my hands didn’t feel as stiff while on AP. But eventually I started coughing and feeling short of breath. Some were transitioning at that time over to the Marshall Protocol and I decided to try it as well because my cough was getting worse. The Benicar (Marshall Protocol) indeed helped with my coughing and shortness of breath. But I became pregnant at 45 y/o while on that protocol for only 6 months. I was told by the MP moderators to discontinue the benicar (angiotensin receptor blocker) immediately and wait it out until after my pregnancy and then resume the Marshall Protocol.
Of course in the back my mind I worried about my unborn baby being “infected” with this horrible disease. I was told by the OB/GYN and pediatrician that the disease wouldn’t transfer to my baby and not to worry. Of course I wasn’t convinced and had his umbilical artery stem cells banked just in case he needed them at some point in his life. My son was born full term, perfect and beautiful. I watched his every move and observed things in him from a very young age that I saw in myself with regard to early, early symptoms. He would startle really easy to any noise. He would have lots of “growing pains” and muscular pains from a very young age. He would get weak easily when he was hungry or hadn’t eaten for a few hours. Lots of other symptoms that no one else would even consider but I knew all of these symptoms combined weren’t normal. After one of his episodes of leg pain, I finally broke down and had his pediatrician test him for scleroderma antibodies and yep, they came back positive with a high sed rate and positive ANA. My worst fears were realized and God help me, a mother knows….don’t ignore your intuition when it comes to your child! Even the pediatrician thought I was a little whacky for suggesting he order the blood test. I had put it off many times because I didn’t “want” to know until I absolutely had to. I would use all of my little palliative tricks like giving him bovine colostrum, stomach enzymes, ginger blah, blah, blah….they all work for awhile but eventually the scleroderma gets used to them and they stop helping. Then I’d add another trick/supplement/green tea. To make matters worse, my husband thinks because the pediatric rheumatologist said my son was “ok” and wouldn’t dx him as SD because his organs checked out ok and his outward signs looked to be negative, that I’m pushing my disease and my phobia off on our child.
My son is 10 years old now. His tests were done last December and I’ve just continued with supplements for him every day. He’s also gluten/dairy/egg free from a young age due to stomach issues. Yesterday he came home and told me his chest hurt all day at school. I had forgotten to give him his supplements before he left for school. To my question after all of that….had anyone on the board found a great AP doctor for children and specifically children with scleroderma? I know the Iowa doctor treats scleroderma but I’m not sure if he’s treated many children and I wondered if he’d be close to retirement by now. Honestly, this is overwhelming enough to deal with this disease myself but now my precious little boy has it as well. On top of it my oldest, 28 y/o son is in prison for several years for dealing drugs. Had to throw that zinger in there too! Seriously, no pride left. There’s got to be a heaven – I’m convinced of that! Really paralyzed with fear at this point and I just don’t know where to start. I live in southern Utah, 2 hours from Vegas.
I see some “old timers” here 🙂 “Hi” to Richie and Lyn!!
Thank you from the bottom of my heart for any help and direction of what to do and where to start.
Martha – SD on Marshall Protocol (olmesartan q 4h)Hey Hey Hey!
Good to hear from you.When I saw your post at first I thought you were going to give us some good new about your remission…then I blinked.O,la la ,I am at a loss for words.I have been doing great but still slogging it out on AP. I only found out 4 years or so ago that Lyme has been at the root of all of this and since I have had it sooooo long I doubt I will ever truly get rid of it.17 years on AP next week.
Some doctors are pretty sure that Lyme can be passed on from mother to child or through blood transfusions.Is there any chance that you might have it and not know???? I do not know any U.S. doctors but I’m sure our all-knowing Maz would know of someone.
XXXXX LynneHi there Lynne, good to see you are still doing well and helping others on this board 🙂 I’m doing ok. My scleroderma is a “smoldering case” – ha ha…is there a such thing? I’ve been back on the MP for about 19 months and it’s helped with my coughing and heart palps. Once in awhile I add in some minocycline.
I’ve been talking with Lauren whose 12 y/o son has linear SD (I believe) on his scalp with a brain lesion. She’s been a big help and a great source of encouragement to me. Her boy is responding well to the minocycline.
With my son, Nicholas who only turned 10 this week, my concern about placing him on AP with mino is he is still growing (bones and teeth). If he is just having the “quirks” of this disease like I did for so many years, I’d like to hold off as long as possible because he is looking at a life of antibiotics if someone doesn’t find a cure…plus I have a husband who isn’t anxious to jump on board with life long antibiotics, etc (hard for healthy people to get it).
I called the doctor in Iowa a month ago and he said that he’d put my son on mino despite his young age. I’m wondering if we made the trip back to Iowa, would the doctor add anything different IV clindamycin and a script for mino? Anyone recently seen the Iowa doctor recently?
Hi Martina,
If you let me know where you’re located, I can take a look to see what AP docs or LLMDs we have for your region. My integrative LLMD is here in CT and treats with oral abx and IVs and is aware of RBF and treats a number of SD patients. He also trained under the famous pediatric LLMD Dr. J., with whom he is now sharing his practice. So, if you’re up this way, he might be a good option….initial consults are expensive, but so is flying to Iowa and staying for a week. ? Should give you a heads up that LLMDs, on the whole, aren’t into MP. However, there are two MP docs in MA, if you need them…just not certain if they accept ped cases.
Thank you Maz 🙂 I’m in St. George, Utah which is in the southwestern portion of Utah – 2 hours northeast of Las Vegas. I’ve never been tested for Lyme disease. AI disease is rampant in my family on my mother’s side. From a very young age, I was hyper flexible. Mom has fibromyalgia, graves disease, MCTD, Grandmother had AI disease, Great Grandmother had RA….not sure if Lyme would apply to my situation.
Thank you Maz
I’m in St. George, Utah which is in the southwestern portion of Utah – 2 hours northeast of Las Vegas. I’ve never been tested for Lyme disease. AI disease is rampant in my family on my mother’s side. From a very young age, I was hyper flexible. Mom has fibromyalgia, graves disease, MCTD, Grandmother had AI disease, Great Grandmother had RA….not sure if Lyme would apply to my situation.Ahhh…okay, was assuming the northeast, as you’d been up to see Trentham before. I think Diana might have already sent you what there is listed for Utah, so if you’re looking further afield, let me know where and I’ll take a look. Nevada is a washout, unfortunately.
If this helps broaden the scope, LLMDs (experienced ones) don’t just treat Lyme, but MSIDs (mixed systemic infectious diseases syndrome), so treating a plethora of offenders. Travel may be necessary for ped cases, as few AP docs or LLMDs treat youngsters. There is a lady doc in Lufkin, Tx, who tress all ages pretty much.
Maz,
Is the doc on your list in Provo. I don’t think I’ve received a list of docs in Utah yet. There is a doc I’ve found in Provo and I could probably get him to give me a script for something. But I’m thinking it might be better to see the Iowa doc since my son is so young. Is there a place on this forum where I could go to find more experiences with the doctor in Iowa?
Thank you so much!Maz,
Is the doc on your list in Provo. I don’t think I’ve received a list of docs in Utah yet. There is a doc I’ve found in Provo and I could probably get him to give me a script for something. But I’m thinking it might be better to see the Iowa doc since my son is so young. Is there a place on this forum where I could go to find more experiences with the doctor in Iowa?
Thank you so much!Hi Martina,
Yes, there are many past discussions on this forum about people going to Ida Grove to see Dr. S. and sharing of experiences. Here is one thread, but if you type in key words into the search box at the top of the forum, like “Going to Ida Grove,” some discussions will pop up for you to read through.
https://www.roadback.org/forums/topic/for-anybody-considering-ap-with-dr-s-in-ia/
I will send you a PM (private message) to see the two docs listed for Utah, but you’ll need to call ahead to ensure they will take pediatric cases. To retrieve this message, just place your cursor over the “Hello Martina” in the bottom right of your screen and select “Message” and then “Inbox.” It’s possible that one or other of the two docs will work with Dr. S. in Iowa to save you the travel.
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