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Jenn,
In my experience some of the AP doctors are just willing to prescribe minocycline, and that is all. I went to two of them, and they both recommended that I daily dose which I do not think is consistent with infectious theory. I wish I had not done it, but I didn't know any better. However, at least these doctors are open to ABX use, albeit only for its immunosuppressive qualities.
No. I don't have access to any of that. I do think it would help, but I also think that throwing ABX at my body without any rhyme or reason is a bad idea in the long run. That is my attraction to MP. It does something different than more ABX, although that will be involved, too. It won't be completely random; there is a plan. I will start off dropping to pulse dosing, but I will be doing it with the help of the Benicar. Right now if I were to try that I think I might blast right into full blown RA – joint damage and all. I am just waiting for blood tests to start it. I also wanted to wait until after my trip to St. Louis over spring break. I wanted to be able to travel, but if things don't settle down for me again, that will be a problem anyway!
(Your Avatar is adorable. Aren't they fun?)
Tiff- Was it difficult to get a doc to do MP? I looked into it once. Printing out the protocol and the secretive additions of antibiotics later.. it looked too intense for the likes of me or my doc. So, after mulling it over, I decided not to bother. How did you find the doc's reaction to all of the MP? Is it overwhelming like I felt it might be????
I ask cuz… you never know!;)
Jenn.
Hi
That first doctors patients probably do have a 3 % survival —While there are no concrete figures –I am certain the survival rate of folks with SD who either are still on AP or have used AP is just so high that an arrogant pompous doctor like your first doctor can not even comprehend it
Richie
Jenn,
It is funny that you find MP overwhelming. Personally, I find the gluten diet much, much more overwhelming. I guess it just depends on how you look at it. When I was being treated for thyroid cancer I felt that whole process was overwhelming. It included things that I found very disturbing, including a weird low-iodine diet, withdrawl from thyroid hormone for 6 weeks, and radiation treatment that meant I had to be isolated from everyone for two days (hospital staff included), and my kids for 10 more days. It was pretty bad. But it was doable because they convinced me that it would mean I could have my life back. Of course I worried that they were wrong. I worried that it would not work, but I believed it was logical and proven, with many years to back it up. Now I look back on that and think it was nothing compared to this. In some ways I think they are way too tenative with treating this. They would be willing to do a lot more research and more drastic treatments if AI diseases were not so darn slow in killing their victims.
The MP site is massive, and the process is a bit confusing, but if you take it in a little at a time, and if you find a good guide (there are people willing to help), then it seems more approachable.
I wish the same were true for me with diet changes, but the longer I have studied that subject, the more confused I have become. It would be much easier if I lived alone. I could experiment with my diet and not affect three more people who are already picky and fussy eaters. They are also way too old to just say, “tough, eat it anyway” and live in harmony. They are all starting to think I am nuts. And maybe I am. With MP I think I can do that and have LESS affect on them. And if and when I get well, perhaps I will regain my credibility. Perhaps.
Jennhere: I have contacted Cheryl, and we discussed the docs that no longer do AP in my area. The names have been removed from the list.
Not only was one doc not doing AP, he sent my daughter from his office in tears. That is the last thing any of us need.
From what I have seen, the folks at roadback are doing a wonderful job trying to keep the physician list updated, but it is impossible to call each and every doc on the list for updates.
From what I was told, Roadback depends on input from patients and fellow roadback travelers to keep the post updated. It is not the fault of any person at Roadback that my area has few to zero AP docs that are close by.
It is my hope to get my daughter to Iowa.
Pheba.
PS. the flower is a Buck rose. I have over 60 rose shrubs, and most are Buck roses. The particular rose in the photo is called “Quietness”, and the photo doesn't do it justice.
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