Help!

[niteowl]

A brief history:
Went on Marshall protocol, 100mg twice a day in Oct 2012. Hit a wall or bigtime herx a month later. With the advice from the forum here, went off AB for a few weeks and used the lemon drink to aid detox. Went down to 100mg every other day and gradually had improvement of symptoms. Then in 2014, had an injection of steroid into left hip for severe pain. A month later had an exposure to poison ivy which caused a systemic reaction and was put on medrol dose pack( steroid). Every time I tried to stay off steroids, I had an increase of RA symptoms which really did a number on my hands. I wasn’t able to straighten or bend my fingers and my feet got much worse. So started going to a D.O. Who practiced the Brown protocol. He put me on an elimination diet and stopped the antibiotics temporarily. When he restarted the Minocycline the Watson brand this time, it was only 10 mg MWF. I have been gradually increasing the dose as per Dr orders and couldn’t get above 30 mg without herxing. I also was unable to go two days without taking a dose before getting severe herx symptoms. So I asked if I could try taking it every other day like I had in the past. Continued with that for awhile eventhough I would have severe symptoms of pain, swelling, and fever and chills for 2-3 hours after taking my dose.
At my appointment in December 2016 for shoulder pain, I thought my D.O. Said I should be up to 100mg everyday. So I proceeded to take 50mg in the morning and 50mg at nite, as I was unable to take all 100mg at one time without severe herx. Then I settled into a routine of taking my med, getting the chills and using my heating pad for a couple of hours on my hands and taking Hempcore for joint and pain relief, and getting some relief within 2-3 hours and feeling better than I had for quite a while during that time until my next dose.
I went to my app’t a month ago, and my D.O. Said he didn’t like the way my hands looked(Being swollen). But when I was on 30 mg, my hands actually looked like balloon hands at one point.
So I went to the lower dose again of 30mg MWF, as directed from last appt a month ago. The rash I was starting to get in my axilla(underarm area) spread to my torso and is now on the wrists and bend of arm which is like a poison ivy rash with equally intense itching. So we also switched to Teva brand due to reading of Watson and rashes. When I take my dose of AB,it is less itchy. I can only discern one knuckle on my hand now, my knees are killing me to the point it is difficult to stand or sit down, the pain in my shoulders wakes me up every 2-3 hours, and the pain is so severe, I have been taking Norcor pain med and have also had to use muscle relaxers for severe muscle spasms. I am unable to do my yoga and I can’t say I have been adhering to the elimination diet recently, as I have difficulty using my hands to prepare meals so it is frequently carryout stuff. Everytime I try to reduce my Mino dose or skip on Sat and Sunday, I have severe herxing. Help!

Diagnosed with RA in 2012
Fifth Disease in '03
Lyme? in 2000?
Had radioactive ablation of hyperactive thyroid in 1997
autoimmune thrombocytopenia resolved
Anemia resolved with treatment of RA with Minocycline
Blood type: B neg

Meds:
Minocycline 50mg once a week
Levothyroxine .88mg
Liothyronine 5mg
Methotrexate 20 mg once a week

Folic acid
B12
B6
Vit D
Biotin
Biosil
Cbd balm
Flexaril as needed
Aspirin
Benedryl
Ventolin inhaler
Lactibiane probiotic

[niteowl]

Hellooooo?

Diagnosed with RA in 2012
Fifth Disease in '03
Lyme? in 2000?
Had radioactive ablation of hyperactive thyroid in 1997
autoimmune thrombocytopenia resolved
Anemia resolved with treatment of RA with Minocycline
Blood type: B neg

Meds:
Minocycline 50mg once a week
Levothyroxine .88mg
Liothyronine 5mg
Methotrexate 20 mg once a week

Folic acid
B12
B6
Vit D
Biotin
Biosil
Cbd balm
Flexaril as needed
Aspirin
Benedryl
Ventolin inhaler
Lactibiane probiotic

[Lynne G.SD]

Hi Nightowl;
Just wondering if you are still on Benica and are you on an anti inflamatory diet?Is there any chance that you might have Lyme or a co-infection as steroids would make Lyme very happy and increase the symptoms.I have SD and only found out years later that I had Lyme also.I have scleroderma and can’t advise about RA but treatment is similar

[niteowl]

Thank you Lynne!
I thought I had Lyme back in 99′, but no blood work was done. I am not on Benica, I tried looking it up but it brings up an antihypertensive drug. As far as an anti inflammatory diet, I often order carryout as my hands are pretty weak, swollen, and ouchy. I’ll consider any advice the community can give! I am desperate!

Diagnosed with RA in 2012
Fifth Disease in '03
Lyme? in 2000?
Had radioactive ablation of hyperactive thyroid in 1997
autoimmune thrombocytopenia resolved
Anemia resolved with treatment of RA with Minocycline
Blood type: B neg

Meds:
Minocycline 50mg once a week
Levothyroxine .88mg
Liothyronine 5mg
Methotrexate 20 mg once a week

Folic acid
B12
B6
Vit D
Biotin
Biosil
Cbd balm
Flexaril as needed
Aspirin
Benedryl
Ventolin inhaler
Lactibiane probiotic

[richie]

You mention 10 mg or 30 mg of minocycline –evidently you must be cutting down 50 mg pills –very inexact -minocycline at a dose of 30mg MWDF is really not a therapeutic dose by any standard –Seems you have a violent reaction to minocycline –taking 10 mg or 30 mg 3x weekly will not accomplish anything in my opinion -which is non-medical –if it was me I would try doxycycline .

[richie]

Hi The way you are reacting to really tiny doses of minocycline is very similar to some folks who have lupus –Have an ANA recently ??????

[niteowl]

Thank you, Richie,
I haven’t had ANA done since 2012 which was neg. luckily we have a compounding Pharmacy that does 10 mg caps. I also have a bottle of the 50’s. The rash is definitely a new thing for me. I don’t know whether to ask to try Doxycycline to see if that’s better? Oddly enough, I think I may have had Rheumatic fever when I was 2 or 3, although not 100% certain of that. I know I was on Tetracycline at that age and it stained my teeth. (Luckily have been able to bleach them so they look pretty good now.)
I wish I had never had the steroids!
What do you do for you treatment, and how did you remedy your herxing?

Diagnosed with RA in 2012
Fifth Disease in '03
Lyme? in 2000?
Had radioactive ablation of hyperactive thyroid in 1997
autoimmune thrombocytopenia resolved
Anemia resolved with treatment of RA with Minocycline
Blood type: B neg

Meds:
Minocycline 50mg once a week
Levothyroxine .88mg
Liothyronine 5mg
Methotrexate 20 mg once a week

Folic acid
B12
B6
Vit D
Biotin
Biosil
Cbd balm
Flexaril as needed
Aspirin
Benedryl
Ventolin inhaler
Lactibiane probiotic

[richie]

I take 200 mg of minocycline daily every day–I had diffuse scleroderma –taking it since 1999 –complete remission but strongly feel relapse is very possible —no side effects at all except some discoloration on lower legs –herx has never been an issue with me —I recently had to change to generic and just had very minor wrist tenderness for a few days —this was a problem area when I was real sick -but went away in a few days .Would suggest ANA blood test –easy enough and it might shed some light on your difficulties –good luck –richie

[Lynne G.SD]

.Have you received confirmation of a specific disease.Like Richie says,the fact that you have problems with such a low dose of mino is a sighn of allergy or Lupus.Even ANA testing is dubious if you might be coming down with SD.Please read http://www.sclerodermainfo.org as there is a real good section on ANA testing.My sister (MCTD/Lupus) did MP160mg of Benicar daily and low dose antibiotics and did very well on it.She stopped and in a few years it came back.She should have remained on a lower dose of Benicar

[niteowl]

Hi Lynne,
Thanks for your response! Looks like some lab tests are in order to hopefully reveal what’s going on. I am going to research the website in your link.

Diagnosed with RA in 2012
Fifth Disease in '03
Lyme? in 2000?
Had radioactive ablation of hyperactive thyroid in 1997
autoimmune thrombocytopenia resolved
Anemia resolved with treatment of RA with Minocycline
Blood type: B neg

Meds:
Minocycline 50mg once a week
Levothyroxine .88mg
Liothyronine 5mg
Methotrexate 20 mg once a week

Folic acid
B12
B6
Vit D
Biotin
Biosil
Cbd balm
Flexaril as needed
Aspirin
Benedryl
Ventolin inhaler
Lactibiane probiotic

[niteowl]

Hi Richie,
Thanks again for your response! What are typical doses for Doxy?

Diagnosed with RA in 2012
Fifth Disease in '03
Lyme? in 2000?
Had radioactive ablation of hyperactive thyroid in 1997
autoimmune thrombocytopenia resolved
Anemia resolved with treatment of RA with Minocycline
Blood type: B neg

Meds:
Minocycline 50mg once a week
Levothyroxine .88mg
Liothyronine 5mg
Methotrexate 20 mg once a week

Folic acid
B12
B6
Vit D
Biotin
Biosil
Cbd balm
Flexaril as needed
Aspirin
Benedryl
Ventolin inhaler
Lactibiane probiotic

[niteowl]

Thanks Richie,
Guess I will have to wait until Monday, now. I missed the call from my Rheummy, who apparently has results from my most recent lab draw. Hopefully they tested the ANA

Diagnosed with RA in 2012
Fifth Disease in '03
Lyme? in 2000?
Had radioactive ablation of hyperactive thyroid in 1997
autoimmune thrombocytopenia resolved
Anemia resolved with treatment of RA with Minocycline
Blood type: B neg

Meds:
Minocycline 50mg once a week
Levothyroxine .88mg
Liothyronine 5mg
Methotrexate 20 mg once a week

Folic acid
B12
B6
Vit D
Biotin
Biosil
Cbd balm
Flexaril as needed
Aspirin
Benedryl
Ventolin inhaler
Lactibiane probiotic

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