POLYMYOSITIS

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Postby lizlovesmark » Sat Nov 07, 2009 11:37 am

Just wondering if anyone else has had antbiotic treatment for polymyositis.Started 6 months ago and I am getting better.Please write back if you have had any experiences regarding this.
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Postby justsaynoemore » Sat Nov 07, 2009 12:30 pm

I was diagnosed in June 2006 with poly along with my RA and inflammation anemia.  I did the usual MTX, Predisone, folic acid treatment for about 18 months (five on the Pred) and nothing helped the poly muscle pain, even the Pred. 

I am coming up on two years on Minocin, and the poly pain disappeared a long time ago.  I am 14 months into remission with my RA markers, but I was recently malpracticed by my endo with a switch from Armour back to Synthroid and my TSH shot up to 119 (I don't have a thyroid, duh) and my liver markers AST was 915 and my ALT was 1493.  They went back to normal as they immediately doubled my Synthroid.  But, now my RF and CCP have skyrocketed, which I anticipated as I ended up being hospitalized over the thyroid medication error and stress is a trigger for RA and my little body just gave out.  They ran the wrong CRP (cardio) and my sed was slightly elevated, so they are rerunning the right CRP to see where I am at.  I am really going to be mad if this medical error turned my RA back on again.

If so, I plan to add Zith and possibly up my Minocin if I have to.  I will never go back on MTX or go up to any of the other RA drugs.   These black box warnings and the reading of people's failures on traditional RA meds on other arthritis sites keeps me convinced that AP is the right therapy for me.

Good luck ~~ Cathy
In remission on Minocin since August 2007
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Postby Parisa » Tue Nov 10, 2009 1:20 am

Hi Liz,

My husband has been successfully treating dermatomyositis with antibiotics and IVIG.  He has been on many antibiotic combinations (not minocycline though, an AP staple here) and for him treating Babesia with anti-malarials has been a crucial part to his recovery.
Husband-Dermatomyositis/Pulmonary Fibrosis 10/05
Lyme/Babesia Protocol 12/06-12/09
IVIG 1/08-12/11
95% recovered and enjoying life again
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Postby lizlovesmark » Tue Nov 10, 2009 12:39 pm

Thank you for your replies. After having polymyositis for 6 years my husband has started  100mg 2x a day monocycline about 7 months ago and had the first cpk level be normal in 6 years.   His cpk was 700 then and 147 now. His highest being 1400.He has  been on meth pred cellcept ivig in the past.Also have  heart involvment(defribullater). Now he is weaning off pred completely off meth weaning off cellcept and his labs are all coming back almost normal levels across the board.Introduced fish oil grapfriutseed extract ,vitamins and supplements and soon will be adding Zith twice a week. I really feel that we have found a way to beat this debilitating disease.Thought I should add he is 42 yrs old.

 His Rheumy does not feel that it is the antibiotic,coincidence that his numbers came down  after taking antibiotic gradual consistent to normal. We Started seeing a  different doc that will continue the antibiotic treatment and add supplements to get him healthy and strong again. It has been a long road and I feel we are very lucky to have found information on the antibiotic therapy.He WILL have his life back again.

Don't ever give up..........
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Postby Maz » Tue Nov 10, 2009 3:07 pm

[user=1287]lizlovesmark[/user] wrote:
It has been a long road and I feel we are very lucky to have found information on the antibiotic therapy.He WILL have his life back again.

 

Liz, so lovely of you to come and share your lovely hubby's amazingly quick story of recovery! I hope he continues to improve and gets this beast into remission in short order. I have to smile when I hear people saying that their docs told them their recovery was coincidental and nothing to do with their AP. The actual definition of a "coincidence" means, "converging events." So, two converging events...AP and recovery...hmmm...let's see....guess that means AP and recovery are pretty connected?!!! :roll-laugh: 

Please come back when you can to give us updates! We don't hear from many Polymyositis patients, specifically, so to have your hubby's story documented here for others to read is so powerful and will provide much hope to others with the same condition. Thank you - you're a treasure!

Peace, Maz
RA/Lyme - ABX since 11/06
Personal Progress Thread: viewtopic.php?f=3&t=301
Current Abx Protocol:
Clarithromycin 500mg BID re-started 11/5/13 (dose increased to 500mg BID on 7/3/14
Compounded Liposomal Artemisinin ("Artemisinin Essentials") restarted 7/3/14, 2 caps twice daily, 5 days per week for 3 weeks each month with 7 days off
Ivermectin 2mg (rx compounded) daily, started 9/21/11
Various staple supps: Enhansa, NAC, ALA, Morinda Supreme, KriaXanthin, B Complex, Milk Thistle, Dessicated Adrenal, Adaptan-All, Probiotics, Systemic Enzymes, Vit D3, Magnesium Citrate, Sodium Ascorbate, ImmunoPro, Nrf2 Activator, Liposomal glutathione, compounded topical progesterone.
Intermittent supps: Chemet every third day, along with NAC and BioPure Chorella followed by BioActive Minerals day following oral chelation. Weekly Myer's Cocktails and Glutathione IV Pushes for detoxification. Tri-salts and Opticleanse GHI.
FIR Sauna and other detox methods as described in Personal Progress Thread.
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Postby Parisa » Wed Nov 11, 2009 12:59 am

Yes, everyone's healing here is just a coincidence or spontaenous remission.  

I'm so glad the minocycline has worked so well for your husband.  I've been in your shoes and watched a young man in his prime whither away.  My husband was all of 46, a long distance runner and a go-getter at work.  Overnight our world was turned upside down.  The roadback for us had many twists and turns as we had to find the right antibiotic protocols that would work for him but we are in a very happy place right now.
Husband-Dermatomyositis/Pulmonary Fibrosis 10/05
Lyme/Babesia Protocol 12/06-12/09
IVIG 1/08-12/11
95% recovered and enjoying life again
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Postby lizlovesmark » Wed Nov 11, 2009 1:10 am

 I share the joys for you and your husband that is wonderful news.It has been a very difficult  scary 6 years,unimaginable really.But things are changing and I know he is going to get better.

Don't ever give up ....................

Thank you Maz for your kind words .Thank you all for your support,I only wish I had shared sooner.
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Postby anjoe » Wed Jan 06, 2010 2:12 am

New  here. I've had some muscle weakness in my legs the past 9 months. Find it hard to go up steps, stairs or get up from a sitting postion. My muscle biopsy just came back positive for PM but my skin is involved also. I want to find out other ways to keep this from getting worse besides steriods that seem to only cover up the symptoms. Appreciate any info and share stories. Thanks....I'm blessed to have found this website and forum.
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Postby Eva Holloway » Thu Jan 07, 2010 12:28 am

Hello anjoe,

welcome to RBF, I have RA and Dermatomyositis and had a lot of muscle weakness, walked bend over. I have been on Mino, Biaxin for two years now and last September I started low dose Naltrexone (LDN),which really has helped my body to start getting straight again. Not as much yet as I wanted too but I am getting there. Check with your doctor to see if you can get the LDN. I was on several medications for the RA and DM which never helped.

Take care, you will find a lot of help on this site. Someone has been in your shoes and can give you the info you need and lots of encouragement.:)

Eva:D

 
Life is: Trying things to see if they work
RA: dx 1999, DM :dx 2006, AS: dx 2007, Celiac:dx2007, LDN add 9-11-09,Alpha Lipoic Acid
Minocin MWF 100 mg 1x, Clindy 150 mg 2x a day, thyroid armour 60 mg, Probiotics + Kefir
Iodine, B-12, Cal-Mag-Boron, NAC, 3 mg LDN, Ester-C 500 mg, Vit D3, E
http://www.rbfbb.org/view_topi
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Postby Davit » Thu Jan 07, 2010 1:30 am

Hi parrisa

Didn't any one tell you, This isn't coincidence. Hell we are all liers and attention seekers. None of this is real. Boy do I hate people flogging conventional meds, They are the liars. So much damage they have done.

Davit.
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Cataracts getting them fixed.
Chronic staph infection.
7 ½ - 10 mg prednisone once daily.
25 mg attenolol once daily.
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