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I decided to tell my non-AP rheumy about the IV antibiotics (I've had two rounds) and he looked at me and said “I've never heard about that ….. whose idea was it? Did you get it from the Internet”? He knew I had been on Minocin.
I figured he could see that I was slowly improving and that this was a “teachable moment” since it will be my last appointment with him. I explained that I am changing jobs and so I'll be finding doctors between my house and my new job. I told him about Dr. Brown's work and then he recalled meeting and hearing about Dr. Brown and his antibiotic approach. He then criticized Dr. Brown's protocol by saying that he kept his patients on prednisone for several years which is bad for your bones. I said I was on prednisone but not for even a full year (and that was not part of AP; it was prescribed by non-AP rheumies).
Anyway, he warned me about the bad side effect of IV cliny's saying I should watch out for diarrhea. I told him that I took probiotics daily. He said that's good – then he explained briefly what they were. I was thinking, “Yeah, I take them daily – I think I know what they are!” Sheesh! :X
We finished the appt. by discussing Mayes' article claiming that minocycline is not effective in systemic sclerosis. I told him about the problem of using Intent to Treat analyses when you have 40% of the minocycline group dropping out (this means they included everyone's data even if they dropped out of the study; which skews the findings of the study towards no effect since we all know that you aren't significantly improved after a few months of AP). He acknowledged they should have done subset analyses, but explained that they really have to do Intent to Treat analyses because they can't change the study while it's happening. I told him I understand that they can't change the study once it's started; I am mad about the study design!
I am glad that was our last visit. At least I can say I came out of the closet, so to speak, and openly admitted I am on AP.
Hello Susan,
I've got SD also and did plain ol' AP for 19 months and now have been on MP for 14 months. I am doing really well. My pajama days are getting less and less.
Talking to non-AP rheumies can be really frustrating :headbang: so I understand where you are coming from. I see a non- AP rheumy and he is convinced that my improvement so far can be chalked up to the natural disease progression. After a few years your skin loosens and softens, blah blah blah. I just smile and say, “Wait and see.” Not sure why he's not happy for me. I haven't had this much energy in 5 years. I don't think the return of my energy is part of the disease progression. Nor the improvement of my lung function. Glad you are finding another doc.
Blessings!
eli
Eli,
If you don't mind my asking, how long had you had SD before starting AP? I am wondering if it was a short time, because I have heard that you don't spontaneously improve in years 2 – 3, but I don't know if that's true clinically.
Did you find the switch to MP difficult? I just don't know if I could avoid the sun. With warm weather coming up and two little ones, I would miss out on a lot of play with them if I was stuck indoors all the time.
Thanks for sharing your encouraging progress – we all need the inspiration!:blush:
Oh, happily, dear! I think I had been sick for about a year and a half…perhaps slightly less…before I started AP. I started Clindy IV's July 15, 2005. Did 15 days of those and then started 100 mg of Mino BID.
As for starting MP, I think my survival depended on it so I just jumped in with both feet and I had the wonderful John McDonald helping me. He got me through some rough patches. I had Lyme on top of the SD but I didn't figure that out until I had been on AP for almost a year. So much of my SD stuff was improving but the fatigue came roaring back. I am an avid outdoorsman so I put 2 and 2 together and figured I had Lyme. And sure enough it was positive. I was absolutely positive I had it even before they tested me. In fact local GP's sent it off to all the wrong laboratories and it was negative but I kept pushing to have it sent to where I knew they did the testing correctly. I was so positive that I was CDC postive. A feat indeed. The CDC makes you jump through ridiculous hoops before they declare you positive. Odd bunch. But the MP adressed both issues. Dr. T didn't want me on the Mino while the Lymie treated me and vice versa so I figured MP was gonna do both and TA DA….I am recovering. The only area where I can say I am not improving much is my Raynaud's but the Sclerodactyl is much better. My lungs are stupendous and my gastric tract is on the road to healing up as well. I am very lucky and very blessed.
To answer your last question. I found the switch to MP not difficult at all when faced with the alternative. Hmmm lemme see…. die or go on MP? I don't look good in caskets. 'Twouldn't be wise to ask how I know. So it was MP. I am very happy with the choice so far. Although life without sushi is a pain in the gazats if you ask me. The day when I can wolf down an entire tuna roll will be a happy one. But until then I am enjoying stargazing with my 3 young girls. We have a new telescope! We have vowed to attend every friday night game when our farm team is in town so that we can enjoy the fireworks. We go to evening concerts and movies and build forts inside on sunny days. It is a new normal but we are living it as fully as we can. Life is just to short to worry about missing a few bites of crab cakes. The sunlight is something I am gradually adding back into my life. It is the dietary d that is the real bugaboo.
Hope that helps. Pardon the longwindedness. I'm in my dotage somedays.
Blessings on this lovely spring evening!
elizabeth
Eli,
So are you avoiding sun because you are having the MP related sun sensitivity? I know that shortly after I looked into MP for Jess and quickly dismissed it because of the “no sun” rule, they changed to a “no dietary D” rule and sun was allowed as tolerated. I am just curious whether you are experiencing the the extreme sun sensitivity that can be a part of the MP? For the next few years, it is not an option for Jess (unless the choice is, like you said, inhabiting the inside of a casket). Maybe three years from now, sun avoidance will fit nicely with grad-school and many hours in the lab. I would love to hear your experience.
Cheryl
I have some sunsensitivity that comes and goes and they say you cannot predict who will have it and who won't. If I had to guess I would say Jess won't have it. I think the younger you are the less of an issue it is. It is becoming less and less of an issue. I don't have to wear the super dark glasses anymore. Also SD patients just don't herx like other patients do. We have smoother sailing…finally something easier for us. I still keep Jess in my prayers!!
Blessings to you two!
I talked to John for a bit tonight and he reminded me that there is also light sensitivity to indoor lighting.
I am glad to hear that the light sensitivity is becoming less of a problem for you, until it's gone have fun stargazing!
Cheryl
[user=368]Elijuh[/user] wrote:
Also SD patients just don't herx like other patients do. We have smoother sailing…finally something easier for us.
Eli, so happy you didn't have the herxing. I am totally gob-stopped:shock: as you also had Lyme and it seems it usually goes with the territory. My herxing has been off the charts, although probably due to higher doses of abx my LLMD put me on initially. Does this mean that all scleroderma patients with Lyme don't herx, or do you think it was the MP that controlled Lyme herxing for you? So interested to hear this. Thanks!
Peace, Maz
Elijuh – Are you saying that SD prople don't herx or don't herx as badly as others? I ask because I clearly did herx, mine manifested itself as a hive like itchie rash. Started on my calfs within ten days of starting AP and worked up my body ending at my jaw line. The process took around two months or so then went away. Then earlier this winter I got another one on my upper body, this one was particularly itchie and took a good six weeks to go away. I do feel markedly better though after this last one.
EGADS, Jeff that sounds miserable. No I think we herx, just not as badly as others or that has been my experience, Martha's too. I didn't know you were on MP. What is your MP name so I can followyou? If you don't mind that is.
I'm not sure, Maz, about why SD patients don't herx as much. Dr. T says it about SD folks too. I have a sneaking suspicion more SD patients are out there like me and have Lyme. Sorry I really can't answer your questions.
Blessings!
e
[user=368]Elijuh[/user] wrote:
I'm not sure, Maz, about why SD patients don't herx as much. Dr. T says it about SD folks too. I have a sneaking suspicion more SD patients are out there like me and have Lyme. Sorry I really can't answer your questions.
No worries…was just interested if you had any insights about this, particularly in the sclero connection with Lyme. 😉 I think your suspicions are well founded about this connection…there are a few Lyme experts who'd agree…Lida Mattman being one who has mentioned this and my doc who specialises in the connection of autoimmunity and Lyme. I also found a study a while back (posted on old BB) where they found spirochetes in skin biopsies of sclero patients with morphea…a European study I think it was. Interesting, eh?
Thanks for your reply, Eli.
Peace, Maz
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