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Hi everyone,
Quick update: RA hit me over night everywhere! My journal says it was in 2007 right after New Years.
I fired my first Rheumy ( he just wanted to put me on MTX and I refused)
I researched with query's like “RA and infection” ( because that's what I thought it was AND that's what it felt to me)
I found this site! I did not even read the book, because I JUST KNEW that there is no other option for me.
I found out that Dr. M's wife came down with RA and he put her on Minocycline within 6 weeks and she fully recovered within a year and a half. (Check out http://www.drmirkin.com)
This told me, that I can beat it too. If one can do it – so can I !!!!!
I “kind of coaxed” the first three months Minocycline prescription out of my Primary Care Doc.
Roadback supplied me with 2 Doc's that treated with Minocycline ( I am still very disappointed that Dr. K. in Arlington does not really believe in this treatment.)
His words: I am 6th generation after Dr.McPhersonBrown in this Hospital and I am a convetional Rheumatologist. I just like to be open though to other treatments and it seems you are responding to this one. But it is not a microbial cause.
He keeps prescribing me Minocycline and does the Bloodtests for monitoring.
My Primary Care offers me to do the same so I don't have to drive so far every 4 months.( After he saw how much I am improving!) But I stay with Dr.K.
I need to convince him!!!!!LOL
Saw Dr.K. onMarch 10th 2008.He told me I am doing so great he doesn't want to see me until September.Blood work comes back with very low Anti-CCP and RF. Rest couldn't be better.
March 28th 2008 -Major Bout!!! I was hurting everywhere again! I had the worst Herpes blister outbreak I ever had! I never had this since I was 14 years old!
3 days later almost all gone – no pain what so ever and blisters almost gone as well. 3 Days!!! My body fought this Virus like nothing.
Painfree and no sign of Ra, so I decide to stop Minocycline on April 8th.
Sofar nothing has come back! I hope this is it! I had another viral infection on May 7th (my thyroid was swelling up and it hurt pretty good) I also had pain in my hip joints which I never had before in this spot- 4 days – all gone. Thyroid pain and swelling was gone within 10 days.
I am fighting one thing after the other but it doesn't last long at all.Feels like my immunesystem does it's job.
I took Mino almost one year (only 2 weeks shy of a full year) and I had it dosed at 100mg twice a day- every day.
Keep your fingers crossed for me. I haven't had another blood test sofar.
I will be the Guinea pig for all and see if this works out. Wish me luck! LOL
(Oh, I am strengthening my body by taking the Schuessler-salts and extra Vitamin C.)
Info on Schuessler salts: http://en.wikipedia.org/wiki/Biochemic_cell_salts
This Info is also interesting for our Scleroderma people on the Board – so read it!!!! LOL
One just needs to believe!!!!!! The mind is a big part of healing.
Rose, as Dr M is on the RBF AP doc list, I had to edit out his full name. If anyone wishes to learn more about this doctor, please follow the link supplied by Rose. Thanks for your understanding.
Congrats on feeling better, however, I would be cautious about going off so soon. I've read that when you go off and RA symptoms come back, it really hits you hard.
I pray that you achieved remission after being on mino for 1 year, but keep in mind that other factors affect things. Warmer weather seems to always alleviate my joint aches.
My AP doc (Dr. T in Boston) also does not believe in the infection theory, but he presribes mino to be as a DMARD. My symptoms are under control although all my blood work is slightly elevated (ESR is 29). I've been on mino for 2 years and he said I will need to be on it at least another year before he'd consider weaning me off.
I'm researching on my own about pulse dosing once I feel stable with things. Dr. T strictly goes by 200mg/day so I'm not sure if this is something to consider once your condition is under control.
Good luck with everything – I hope your pain free state continues! 🙂
Hi Roserd:
Glad you have gone into remission.
I am interested to know about the Schuessler salt ,that you have mentioned. Where do you get them can you please give that information.
Thank you so much.
Regards
SS
I was painfree quite some time before I quit Mino. The “Bout” I do not count because it was a virus acting up and I do expect that I am a little prone to having some joint pains in the future now and then when I have a virus (e.g. cold).But that should not show up in my blood work, I think.
I do have my Mino still on hand and I will for the next couple of years- believe me.I also will keep doing my blood work to monitor things.
I just came back from Europe and brought with me a large supply of Schuessler salt tablets. My Mom (lives in Germany) sent me these (and the Book to it -written in German). I just bought them there at the Apothecary, sofar I have not bought any in the US.
If you google “Schussler salts” you find all kinds of websites about them and health stores that sell them. I might even check at my local Health food store if they carry it.
Some people believe in them, some don't. I believe in them since my Stepdad's nice was Anorexic ( from 13 to 15 years of age) and when it got seriously bad a german Doctor treated her with cell salts and a month later she sported a great appetite and gained her normal weight back in about 4 months. She's a happy 16 year old and at a normal weight for her age. So these things do something and they can't hurt in my opinion!
I personally take 2 tablets ( 6X strength) of all 12 salts combined 2 to 3 times a day.I also drink once a day one teaspoon of Magnesium sulfate (Epsom salts) diluted in water. (Don't do more or it functions as a mild Laxative!) I take a Multivitamin/Mineral and 1000mg of Vitamin C.
Every other day (or every day sometime) I drink my homemade Kefir (as a probiotic). I never did any special diet and I do drink way too much coffee, but it never bothered me. I normally eat good amounts of veggies and fruit pretty much every day.
The rest is positive thinking, no matter how hard things hit me! LOL
[user=118]roserdRA[/user] wrote:
I will be the Guinea pig for all and see if this works out. Wish me luck! LOL
Hi Rose,
If you are determined to try this for yourself, then that's an empowering choice to make for one's self, but I'd humbly suggest you don't do it for anyone else but you. 😉 Having had very serious, severe RA, myself, I just couldn't imagine backtracking to that dark :sick: place and wouldn't wish it on anyone else. :crying:
I'm just a patient, too, but I tend to feel, as Serenity mentioned, that going on a pulsed maintenance dose for a year or so would be the course I'd probably choose to take if I had been a daily doser who'd gone into remission. I remember the story of Dr M's wife and it is encouraging, but I'm not sure I would want to take that kind of a risk with my own health. Daily dosing tends to have more immunosuppressive properties, so in my own case, I think I'd test, first, whether I was herxing on pulsed doses or not. Herxing is the best possible sign that the underlying infectious state is still active.
Everyone's pathogen load is unique and RF can be elevated in any number of conditions. Although I was excited to hear of Dr M's wife's success, once I'd reassessed the picture, I realized it was not all that clear whether his wife had some type of reactive arthritis that would have cleared after a year or so or even if she had Lyme arthritis that has gone into remission. So, I must admit, I'm not entirely convinced. Don't get me wrong, I tend to be a positive person, as well, and strongly believe that mental state affects our physical well being. However, also being a pragmatic kind of gal, I just feel it to be just as positive a thing to do to ensure all corners have been covered. It's just a personal choice, though, and we're all different, of course. 😉
Wishing you every success, Rose, with whatever course you choose!
Peace, Maz
Hi Maz,
Bottom line is, of course it's for myself!
I would not say or do this if I am not 100% convinced, that it's gone. Call me crazy but some things one just knows.
Have you ever had the feeling of absolute no doubt about something and after finding out you where surprised that you actually where right?
My believes are that I do not want to tilt the balance beam to far now into the other direction.
I will be honest enough, if it shouldn't work.
But I like to encourage everyone that no matter how long it takes for each individual, one does not have to take “you will have this for the rest of your life” as THE answer. Never stop believing that you too can beat it.
I think we settle too much into believing what “the general public” believes, because it is very convinient to follow the flow. I do believe…sometimes….. to get somewhere we need to take a risk. A personal risk that doesn't really hurt others but may convince and help, is to me very ok. After all, isn't that what Dr. Mc Pherson Brown did?
Let's not get too philosophical here. I'll just try – end of story!
[user=118]roserdRA[/user] wrote:
But I like to encourage everyone that no matter how long it takes for each individual, one does not have to take “you will have this for the rest of your life” as THE answer. Never stop believing that you too can beat it.
Rose, well said! I admire your positive attitude greatly and wish you every success! Please stay in touch and let us know how you get on over time. I remember when you began your journey last year and it's been wonderful to follow your great progress to date. 😀
Peace, Maz
RoserdRA- I am in the same boat as you only I'm off AP cuz I have to be, not by choice at this point. My RA hit me about the same time as yours….December 2006, out of the blue. I started on mino a couple months later and started out daily dosing at 200 mg until August 2007 when I had IV clindy. After IV clindy, I responded very well. I did go back on mino but developed a sensitivity to it. I then switched to zithromax and was on that for a couple months before my liver enzymes became elevated. Now I am currently on nothing and have been on nothing since early April. I have no signs of RA and all my blood levels have returned to normal. (Except ANA which is still high). I just had my latest liver test and my enzymes are not quite normal yet but they are heading down that way. I see a regular rheumy and I also see Dr. S in Ida Grove. Both suggest I stay off antibiotics until liver levels return to normal.
I have recently asked Dr. S his advice on what i should do. He said I could try doxy, although he thinks with my track record on sensitivity, I may have problems on that. He also said I could do nothing and see if it returns and then hit it again with IV clindy. Currently, I'm not doing anything cuz I leave for Egypt next week and don't want to stir anything up. WHen I get back, I will think about what to do. Reoccurrence is a constant worry with me….I, like Maz, don't want to go back to that dark place of not being able to function. On the other hand, I am extremely sensitive to anything I take and every time I try something, I get so sick. Its really hard to know what to do. I wish, if there are others out there who have stopped AP and continue to keep it under control, they would write on the board. Dr. S said its possible that I knocked the infection down enough so that my own immune system could handle it, but its always on my mind and I fear its reoccurrence!
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