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#411724 09/10/10 11:58 AM
Joined: Jul 2010
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ValsMum Offline OP
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I just started minocycline for my RA last week. I read a book called "The RoaD Back" too this week. It's like Dr. Brown (author) took a peek inside my life. HE knows the disease so well. He said the first symptom of RA is fatigue, then a joint pain will appear and it may move around, then weight loss or weight gain if you tend toward a bigger build, depression/sadness and then anemia. He helped so many patients reach remission with slow steady progress of antibitiocs. He said it may take 6 months but people who failed with metheltrexate and gold even reached remssion.Over 10,000 patients he helped. I wish I had the guts to start earlier, I can honestly feel it working. My back is hot and tingly.

I had an idea that I might build up a tolerance to minocycline , but he wrote he hasn't seen it in the tetracycline family. The dose is so small.The risks are so small too. I keep reading testimonial after testimonial at Roadback.org .
I know how painful RA is, somedays my knees swell up so bad I can't stand to stand.
A week after the birth of my son , I had mastitis(breast infection), so I went to the doctors and they tested the skin and then later they told me I had a Staph infection, I probably picked it up at the hospital I gave birth. Soon after that I got my firts joint pain, I thought to myself there may have been a connection, I don't know but now I have RA and when I read about people who had RA & now don't you can bet I want to be one of them, in remission.
By the way , I take sulfasaliazine and prednisone 5mg along with the minocycline, so I didn't have to stop my current medication. It did make me flare up a litle, but most (80% )said they felt worse before they felt better.

If my number go down CRP 220 and ESR 29, I will post it for sure, but it may take a couple months.



Last edited by mig; 05/28/11 08:21 PM. Reason: to correct and activate site link

Diet change has improved my RA. I feel best eating raw veggies and some fruits and avoiding grains, sugars, nightshades, beans and dairy. Sed rate dropped from 65 to 19, but it took over a year.
www.fatsickandnearlydead.com

excess fat/oils = pain for me
recipes for raw food on Youtube "raw food romance"
and "healing josephine" Josephine is in remission from RA after two years by change diet/exercise
Joined: Dec 2008
Posts: 5,231
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Good luck, ValsMum. I tried minocycline for six months but, unfortunately, it didn't work for me. I've been on methotrexate for a year now and doing better. But I wish the minocycline had worked partly because I worry about long term use of mtx.


Wendy

Rheumatoid Arthritis
Methotrexate, Celebrex, Plaquenil
Joined: Jul 2010
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ValsMum Offline OP
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Did you feel any tingly feelings in you back/body? Did you have that herx reaction, it feels like a flare?
How long did you have RA before trying it? Can you try Doxy with metheltrexate, sometimes I hear you have to wait longer than 6 months?
Do you play around with your diet?
I can't eat dairy, nightshades and now it seems best to stay off most grains and fried things, not much left, but I hate pain.

Didn't mean to ask so many questions:)

Best to you, take care.


Diet change has improved my RA. I feel best eating raw veggies and some fruits and avoiding grains, sugars, nightshades, beans and dairy. Sed rate dropped from 65 to 19, but it took over a year.
www.fatsickandnearlydead.com

excess fat/oils = pain for me
recipes for raw food on Youtube "raw food romance"
and "healing josephine" Josephine is in remission from RA after two years by change diet/exercise
Joined: Dec 2008
Posts: 5,231
Offline
Joined: Dec 2008
Posts: 5,231
I am celiac so haven't eaten gluten in more than 20 years. I tried NSD almost two years ago before my RA diagnosis when there was a suspicion it could be AS. It didn't appear to make any difference. I've also tried fasting but can't do it for too long. I felt slightly better while fasting (but that was in the early days before the RA got so bad). When I ended the fast, everything returned the same and the improvement was only minimal and may have been in my head!

I was diagnosed eighteen months ago. The symptoms began at least a year before that and I may have been experiencing symptoms for a while before that. The RA got very severe by early last summer when my ESR shot up to close to 100 and my CRP to 110.

It has taken almost a year of being on mtx for my ESR to return to normal (as of last blood test) but my CRP is still slightly elevated.

I started the minocycline in the spring 2009 just after my diagnosis when the RA was getting very bad. I took it until September 2009, possibly not long enough. But, by then my inflammation levels had got so high my doc was worried about internal organ damage so I agreed to go on mtx. I didn't try both at once because I was worried about how toxic mtx might be and wanted to be sure I knew what was causing problems if I got sick after starting it.

Don't worry about all the questions. If my responses help you or others with RA, I'm really happy.

Oh... and no, I didn't have the tingly feeling or a herx reaction as far as I could tell, but I was getting SO sick by then that I'm not sure I would have been able to tell. I went on a fentanyl patch shortly after because my pain levels were sky high.

Last edited by WendyR; 09/10/10 02:43 PM. Reason: Added more to respond to question

Wendy

Rheumatoid Arthritis
Methotrexate, Celebrex, Plaquenil
Joined: Jul 2010
Posts: 1,191
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ValsMum Offline OP
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Thanks Wendy for all the information. I wanted to mention something about the minocycline. I started at a high dose, it is called The Harvard Protocol. Minocycline works as a DMARD, and I started out way too high..ouch. 200mg everyday, it put me in a bad flare I could not bend my knees. I had to cut down to 100mg once or twice a week.
Most (80%) of the people in remission from minocycline had a herx reaction first, that is, they felt worse before they felt better. Some felt worse for months. That was the case for me, I haven't had a flare like that of two weeks ago..ever.
Minocycline has worked for about 80% of the people that try it.Some go from feeling just 25% better all the way to remission. I hope I am in the 80%. What I have noticed is the long term commitment it takes. I read the testimonials and sometimes it takes 6 months to one year before the sed rate goes all the way down to normal/remmission.
What I also read in the book "The Road Back"
is that DR. Thomas Brown would use prednisne occasionally up to 10mg so the medication could penetrate the joint. I REALLY recommend reading the book, it gives a lot of hope. There are pictures and stories of patients that suffered 20 years + and finally reached remmission. Dr. Brown really knew the disease so well, i can't emphasize that enough, that is probably why I like the book so much. Well I'll have to be patient now and just hope for the best.

Joined: Jun 2010
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Royal_AS_kicker
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Is that the doctor who gets people off of psychotropic meds as well? Does the RA have something to do with his view of antidepressants? Hmmm.... I get more interesting reading material here. I hope it works for you smile


ANA+ RF+ Rh- HLAB27+
Dx JRA 1967, GAD 1997, AS 2009, HMs 2010, CPS 2013
pulmonary edema w/ NSAIDS 2009

Movin' it so I don't lose it!

Joined: Jul 2010
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ValsMum Offline OP
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What about psychotropic drugs? I never read anything about psychotropic drugs, Dr. McPherson Brown has been deceased for many years, he only worked with arthritics and his approach was basically simple, using antibiotics to treat arthritis, mostly from the Tetracycliine family. I never read anything about antidepressants or anything outside of him treating arthritis.

As the patients healed he would see depression lift,brain fog lift, joint pain dissapate, etc. He really wanted to help people and since he helped over 10,000 patients, he knew this disease inside and out.I was amazed at how accurate he knew how the patients felt, physically and emotionally. Well if the antibiotics don't work for me I will be honest. I too would like less pain and suffering. This year has been the most physically painful year of my life, I wouldn't want to repeat it it or see anyone else have to go through something similar. So I'll report back in 3-5 months or so and hopefully I'll have some good news. If not I'll be trying another DMARD.


Diet change has improved my RA. I feel best eating raw veggies and some fruits and avoiding grains, sugars, nightshades, beans and dairy. Sed rate dropped from 65 to 19, but it took over a year.
www.fatsickandnearlydead.com

excess fat/oils = pain for me
recipes for raw food on Youtube "raw food romance"
and "healing josephine" Josephine is in remission from RA after two years by change diet/exercise
Joined: Jun 2010
Posts: 3,865
Royal_AS_kicker
Offline
Royal_AS_kicker
Joined: Jun 2010
Posts: 3,865
When I go to http://www.theroadback.org/ I find a site that tells people how to get off of psych meds. I am so confused. confused2


ANA+ RF+ Rh- HLAB27+
Dx JRA 1967, GAD 1997, AS 2009, HMs 2010, CPS 2013
pulmonary edema w/ NSAIDS 2009

Movin' it so I don't lose it!

Joined: Apr 2002
Posts: 12,465
M
mig Offline
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Joined: Apr 2002
Posts: 12,465
Hi Erica,

Try this link instead: roadback.org

smile

Joined: Mar 2008
Posts: 3,233
Dow Offline
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Posts: 3,233
Reading more and more about how problems like inflammation, auto-immune, depression and even autism could be originating in the digestive system, and treated with diet and antibiotics, seems to be gaining traction lately.

Like this recent article from Huffington Post:

5 Steps to Kill HIdden Bugs in Your Gut That Make You SIck


Dow
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