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Hi Richie,
Good choice of picture you chose! I have not seen my Ruemy not till next week, but I'm sure he probably wont be in favor of this AP choice I have made, but then I will go see Dr. R in Provo, who is a AP Dr.. and then I will see what he thinks for SD is best, but just from my investigations I believe what I'm doing is the best to start out with & then I'll go from there 100 mg 2@ day Minocin ( Steifel) Brand. I really don't like IV's but could do that is that was necessary!
Thanks again to everyones op ions & suggestions, most Dr. only know a little bit about this SD, as I have found out the hard way, so its nice to know what everyone else has been dealing with.
Nico
😎Hi
Thirst or dry mouth can occur that is why drinking plenty of water or seltzer water is encouraged
Richie
Well I saw my Rumy this week! I was sure right about him not going for this AP I am on. WOW, he said Dr. Brown was a Phoney and conned everybody. I asked him if he had read the book, he said NO, waste of my time!! so does that tell ya what an uninteresting day I had> Then he gave me a list of different medications being used for SD, but minocin was not one of them. more or less he's old and does not see around the box. So I think I will go see this AP doctor here in Utah, believe I won't mention anything about AP to my rumy again, I think most of Rumys will respond this way, it's not what they were taught. He did say that down the road the side effects are bad on Minocin, you can get Lupus side effects, Jaudance, hardening of the arterys , ? I have not read anything like that, is he just trying to scare me ? well is anyonw aware of these symtoms on Minocin ?
Still Smiling, Nico
Hi Nico,
Haven't heard the “hardening of arteries” reason yet! That's new to me. Actually, Amy Proal has a lot of info on her bacteriality website that says the exact opposite! Her theory (and I've heard this many time before) is that pathogens (mycoplasma) are likely the cause for arteriosclerosis. Mycos sequester cholesterol from the host in order to maintain their outer lipid layers. What is known is that inflammation triggers the body to respond by patching up any little fissures in the arteries with cholesterol bandaids…a good thing until it gets out of control. Just makes more sense to me that if we have a heavy pathogen load (mycos) and they are the cause of the inflammation in the first place that the cholesterol they are sequestering for their own ends might be the cause of too much heavy “patching” that goes on in the arteries.
Of course, the above isn't a very “scientific” representation of Amy Proal's theory and I'm no scientist, but I'm just a little boggled by the rationale that minocycline is so “dangerous” … if minocycline was such a dangerous drug, then why would it be prescribed to teenagers for acne, longterm? 😕 And, what about the immunosuppressant drugs out there commonly prescribed for our diseases causing anemia, lymphoma, life-threating infections, chemo-induced heart failure, liver and kidney failure…the list goes on an on? These aren't dangerous? I just don't get the resistance to not try this relatively innocuous antibiotic as a therapeutic probe, if nothing else. Doctors use therapeutic probes every day. Sorry…I get carried away sometimes…:roll-laugh:
Well….must dash now to get ready for a friend's grandson's first birthday! Nothing like a new life to bring back the promise of a new life! I might even indulge in some birthday cake to line my arteries! 😉
Peace, Maz
Well, I would be laughing if it weren't so sad. Your experience is exactly the same as mine when I saw the rheumatologist. He is an older doctor and probably set in his ways. The wonderful news is that my personal physician at Kaiser knew of people on the protocol when he was an intern in the midwest. He had no difficulty with me trying the protocol because, as he said, “we put young people on high doses of Minocycline for acne and it is pretty benign.”
When the rheumy called me back to say he had read the stody and that it didn't work, he could see that I was on minocycline while he looked at my records on the computer. He denied that my doctor could have had any exposure to the protocol! Well, excuse me. I only know what my physician told me. Why would he lie? I guess I've burned my bridges with this rheumatologist. He was really offended that I was able to find the treatment I wanted. Isn't that a sad attitude for a doctor to take?
I wish you great success with your new doctor.
Katy
Doesn't surprise me in the least–I've seen that attitude with a lot of doctors. Their egos get in the way of our therapy. Stick to you guns. I've long since learned that I have to take responsibility for getting better and change doctors when they don't listen.
I've been getting swollen these last two weeks–ankle blows up, finger joints on the left hand look like they would pop if I put a pin in them. Got blood drawn yesterday and hope the results will speak to my neurologist. (I've long since given upon rheumies). Have put on 10 pounds in the last 4 months and hope a lot of this is fluid–tried a diruetic one day and shed 2. Sound familiar to anyone? Any suggestions?
Dena in St. Thomas
I have not had this reaction. Are you drinking plenty of water? It's a natural diuretic. What a nuisance. I hope things will resolve soon.
katy
Dena,
As you are well aware, many meds have the side effect of weight gain, ankle and leg swelling. For example, for Raynauds, I was Rx'd a mild calcium channel blocker. Unfortunately, I began getting swelling symptoms and gained 11 lbs, .. and this was while I was very sick with the flu and not eating! And yes, I later used a diuretic to lose the weight and swelling.
Another example is Lyrica which I just started to dull the burning of my skin and get some sleep. Fortunately, for the last 2 nights I have slept! And how wonderfull it is to wake up feeling rested and not exhausted. But I must keep a watch on my weight and swelling, because that is also one of Lyrica's side effects.
What meds are you on? Any new ones?
Randy
Diffuse SD since Apr '07
AP since Feb '08
100mg Mino twice daily
Stopped Clindamycin IVs Aug 2019
"No one should profit over someone else's illness"No, that's why I'm puzzled. I went off Boniva in Feb. after two months on it and sudden excruciating pain. That subsided after two weeks, but the swelling and pain is back and persistent. I take a One a Day Woman's vitamin, CaltrateD with minerals (the with minerals kind is new as of two months ago and gave me enough magnesium to cure my restless leg syndrome so I don't take meds for that any more), 2mg estrace, 100 mg minocycline three days a week, Spectrabiotic on days I don't take minocycline, 200-400 mg of Celebrex daily, vitorin for my cholesterol, and tylenol Arthritis strength. That's why I can't figure this out. Thanks for pondering this list.
One of my favorite quotes from the proven therapy by Scammell,
“All patients are consumers,whatever the name of their disease, and they deserve not just to participate but to be in charge of the process by which they select the most appropriate therapy and hire the best physician to provide it ! “
Thanks to all on this board for the strength I receive by educating myself with the pros & cons of different opions of everyone!
Nico:blush:
I had the initial dizzines- and an eventual “herx” about 2 months into it. The herx was not fun. I also had some emotional herxes for about the first year. I couldn't identify them at first. Eventually, I realized what was going on. I may still have them, but even if I do… PMS is worse at this stage of the A.P. game!
Other than that, my side effects have been less pain, dry eyes GONE, dry mouth GONE, tingleing sensations all over my body that made me consider M.S. GONE, aching heels GONE, tearing muscle sensations GONE, Joint pains MOSTLY GONE… 🙂 I just LOVE A.P.!
Jenn
Today I went to see my Dermatoligist, I asked him to put me on Minocin, He did not even hesitate, he said you know I have a patient with RA who is almost cured from taking Minocin, I have been seeing her for years and I was amazed at what it did for her.! So yes lets give it a try! I about fell off my chair, this Dr. I have had for almost 25 years, and he still can see outside the box, as I have heard it put! he was even OK with giving the perscription for Minocin Only and also getting it out of Canada, he also told me that the original Minocin he persribed years ago was a capsule (pill) that was made by Lederale, any comments on that one ? Well its Nice to have a Dr. make me think I'm not crazy for wanting to go on AP, he has even seen his own results with a patient!
:blush: Nico
[user=124]kittrasis[/user] wrote:
What are the symptoms of a Herx? Is extreme tiredness or sleepiness a symptom?
Hi Kittrais…yes, fatigue and general malaise are very much herx symptoms…have been experiencing some of that, myself, today. :sick:
You might find this link helpful on the main site (under Education/Brochure Sheets), explaining the herxheimer reaction:
http://roadback.org/index.cfm/fuseaction/education.display/display_id/91.html
Peace, Maz
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