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Hi! This is my first post. I haven't had extreme difficulties, so I haven't really felt like I had anything to add to the discussion, but now that I have a Dx, I thought I'd start sharing my experience. I read y'all a lot, and really love this community! I am 55 years old, and have been healthy and active until…
June 2005, I got sick, after eight weeks of being flattened, I guessed that it was whooping cough. In late July 2005, I began to have hyperpigmentation on the tops of my thighs, and it slowly moved down my legs over the next few months. I also started to have a scaley-purpley rash around my eyes, later around my mouth. October 2005, I search on-line and guessed I might have scleroderma — what a radical thing to think — I have to be a hypochondriac, right? The internet just gives us TMI. Feb. 2006, I go to a dermatology office, the PA listens to my symptoms (didn't tell her what I thought it might be), and she mocks me, “what do you think you have, scleroderma?” Does leg biopsy, which is inconclusive. Through 2006, 2007, 2008, I'm thinking I am delusional, but I start to have weakness in my neck, right arm. March 2009, neurologist does blood work and I'm positive for two: scleroderma and FSH muscular dystrophy — he tells me 1) don't bother with physical therapy (I've been doing it for seven months with great results), it won't do you any good, and 2) you don't need to see a rheumatologist. I call in all kinds of favors and get a lung x-ray, ECHO, and pulmonary stress test — all negative. Then, I find roadback.org. and get a referal, and make my appointment which was last Tuesday and Wednesday.
Dr. says I have scleroedema. I look on-line to read more, it's associated with whooping cough. How interesting. I have swollen hands, feet, tight face, Dr. says reduced mouth opening, and losing connective tissue in knees.
I started AP last Friday. Tissue in fingers and toes has started loosening. Even a pucker on my finger tip! Mouth opens slightly wider, less joint pain. Greater dexterity, agility. Even though Dr. said neck, arm are unrelated to scleroedema I have greater mobility in right shoulder.
I'm having a little trouble adding to my profile and figuring out how to work with the text icons, but I'll get there…
I am on Doryx 150 mg, 2X each day M-W-F, Probiotic, Omega 3, CoQ10, Acetyl L Carnitine, Beta Glucan, and Energy Booster.
This post has been moved to General Discussion area of the Board where others can comment and respond. The Personal History and Progress section is for author's journal notes only and cannot generate replies from others. RBFV
Margaret – welcome to the Support Forum and sorry that you had to find us. However, it sounds as if there is some relief in that you finally have a diagnosis with which to work – alot of us can relate to that. There are a number of wonderful SD people in this Forum who have been down your road and will gladly share their accumulated experience and wisdom.
Looks like you have done fine with your profile (lovely image for your avatar by the way). To update information at any time, simply click on My Account above right. Then click on Profile (middle tab that comes up) and go to the signature box at the bottom to add to/change diagnosis and/or treatment. As there is a limit of 255 charcters in this box, abbreviations come in handy. This information then comes up every time you post.
Glad you seem to have noticed a few improvements already. Do you mind me asking why your doc has prescribed doxy rather than mino for your abx? Welcome again. Lynnie
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)Hi Margaret, and welcome to the board. It's not a good diagnosis, but at least now you know the enemy.
I've also been sick since '05 and took a while to get a diagnosis. First diagnosed with Scleroderma and RA, as well as a laundry list of other autoimmune diseases. I had huge improvements on Minocin alone, but it wasn't until we learned that I also had Lyme and had to switch up the protocol with more antibiotics that I got much better.
It gets complicated, but you're on the right track and should have excellent results, especially since you're seeing early results. Please let us know how you're getting along.
Take care…..kim
Margaret,
Welcome! Glad to see you here. We still have to get together for coffee. I am off until Aug 3rd.
Cheryl
Thank you for all your wonderful help. Lots to share. I have busy weekends between now and August 3, but could meet you one a.m. at the Starbucks either up by the fire station or the one at Safeway. Name the time. Or, do you like the Perfect Blend Cafe? I'm available, and doing very well.
Dear Kim,
Great to meet you! You've been quite the inspiration over the last several months. I believe the earlier you can attack this, the better your prognosis. I am grateful for you all, and just as excited as I can be to be getting treatment. I hope to contribute to others the way you do. Thanks so much for all your wisdom.
Margaret
I didn't ask Dr.F specifically. I was so impressed with his attention to every detail, and what he would extract from each question he asked me, that I was dazzled, I guess. He was unbelievably exacting, and spend a huge amount of time with Bill and I.
Dr. F. said that i have scleroedema. I looked it up on line and found an article linking scleroedema to whooping cough — which is what I am certain I had in the summer of 2005 just before my first symptoms appeared. So I feel validated in a small way. I am guessing that is why he is starting me on doxy, that I'm a little different than all the other kids…and he's tweaking the antibiotics for that reason. (read the “parrot” diagnosis last night, and he just seems to have so much knowledge in that head of his) He wanted to see me again in a month, but we are going back in September. I'll be sure to post updates at the time I know what my labs show.
I wouldn't say I'm racing toward recovery, but I can pinch twice as much skin on the back of my hands as I could a week ago. I am so excited.
Lynnie, one more thing, I've been posting on Inspire the last few days, and I'm encouraging someone from Australia to seek roadback assistance. I hope she finds you.
Margaret – so glad to hear you've seen Dr F and have a clear dx now. You sound extremely motivated and like you're on the right path. Good luck to you and look forward to hearing more about your progress!
Thanks, I don't know, maybe someone can tell me, I think I had a herx this weekend. I got really exhausted and not clear-headed, and just felt like I was getting sick for about 48 hours. I laid in bed all day yesterday (which is not like me, even when I've felt bad for the last few years) and watched the entire John Adams miniseries — I cried. Didn't feel so hot today, but after a 20 minute nap this afternoon got up and am good to go again. Feel good and clear-headed, energetic now. Was that what was going on?
Margaret:
Herxing seems to be quite individualized and up until yesterday I didn't think anyone in my family had ever had a clear herx, three of us are on various AP protocols. Well all of that changed this week. I started a new combination of Amox, Zith, and Flagyl, and I had what was a clear as a bell herx yesterday, and somewhat also on Thursday. I felt fluish, achy all over but no real pain to speak of. All of my muscles and joints felt stiff and achy. It felt just like when I have a high fever, but I did not have a fever. My daughter's friend even mentioned that it looked like I had a sun burn. THEN, the chills hit. Even with the worst flu I have ever had, I have never had chills like this. And, while I don't know how hot is was last night at around 7PM, it certainly was not chilly. I was freezing. The timing was clearly dose related, both days it started about 6 hours after taking the antibiotics. I took the pills today around 3PM and am laying here waiting to see if it happens again.
I am glad your herx came and went with little fanfare, some people have such bad reactions that they feel like they are dying. Mine was not so bad, no real pain, just aches and chilles that forced me to bundle up in bed! It cleared in the middle of the night and I felt fine, not great, but all of the aches and chilles were gone. This is going to be an interesting ride if I can stick with the program. I am not the most compliant of patients.
Cheryl
Well, yours was worse than mine. I felt fluish, but didn't get the chills, although I felt feverish without the fever. I haven't had joint aches in three weeks, but did pretty much all day yesterday. I was grumpy, too. Good thing Bill loves me. I was real emotional — which isn't normal for me.
Hope you feel better. It's all worth it.
[user=2]Cheryl F[/user] wrote:
Herxing seems to be quite individualized and up until yesterday I didn't think anyone in my family had ever had a clear herx, three of us are on various AP protocols. Well all of that changed this week. I started a new combination of Amox, Zith, and Flagyl, and I had what was a clear as a bell herx yesterday, and somewhat also on Thursday. I felt fluish, achy all over but no real pain to speak of. All of my muscles and joints felt stiff and achy. It felt just like when I have a high fever, but I did not have a fever. My daughter's friend even mentioned that it looked like I had a sun burn. THEN, the chills hit. Even with the worst flu I have ever had, I have never had chills like this. And, while I don't know how hot is was last night at around 7PM, it certainly was not chilly. I was freezing. The timing was clearly dose related, both days it started about 6 hours after taking the antibiotics. I took the pills today around 3PM and am laying here waiting to see if it happens again.
I am glad your herx came and went with little fanfare, some people have such bad reactions that they feel like they are dying. Mine was not so bad, no real pain, just aches and chilles that forced me to bundle up in bed! It cleared in the middle of the night and I felt fine, not great, but all of the aches and chilles were gone. This is going to be an interesting ride if I can stick with the program. I am not the most compliant of patients.
What you have explained is probably a daily occurrance for me–the fever, aches, and chills usually come in the evening after supper. It's getting better–I think I'm beginning to win the battle, but it sure is tough!!
Trudi
Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?
up until yesterday I didn't think anyone in my family had ever had a clear herx
Cheryl – picking up the info that you posted on another thread, I wonder if that was because you were all on a daily dosing regime of mino. Lynnie
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)Hi Margaret,
Just curious – how did your doc determine muscular dystrophy – and do you even believe that to be true? We are still in the process of ruling that out for my BF (SEB). So far genetic tests (which insurance does not cover) have come back negative.
In any case, it sounds like you are starting the AP at a relatively early stage and are having some promising results. Best of luck!
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