Cpnhelp.org

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Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 6.5 Wheldon CAP 16th March 2006

Hi,

Eveything is going on well on my CAPi. There is no change on my situation. But sometimes I have fake myopathy attacks. These are not as strong as real attacks and disappears in a few hours.  

I wonder that if Cpni causes beauty-spots on body. I have strange and big beauty-spots on my back.

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Wish the best for you.

 Oguzhan

Myopathy diagnosed on November 1997. Started Wheldon CAP on 07.07. 2008. Have been taking abxi since 09.05. 2008. Now I take Doxyi 100 mg. twice a day, everyday and Roxyi 150 mg. twice a day, everyday. Metroi (Fl

Hi Oguzhan,

Pleased to hear that the treatment is not giving you too much of a hard time.   Such episodes as you describe are to be expected and it seems a good sign that they do not last too long.

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Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 6.5 Wheldon CAP 16th March 2006

Hi Michele,

Thanks for your comment. What do you think about the beauty-spots (I mean mole)? Can they be related to Cpni? Yilfer says yes.

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Wish the best for you.

 Oguzhan

Myopathy diagnosed on November 1997. Started Wheldon CAP on 07.07. 2008. Have been taking abxi since 09.05. 2008. Now I take Doxyi 100 mg. twice a day, everyday and Roxyi 150 mg. twice a day, everyday. Metroi (Fl

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Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 6.5 Wheldon CAP 16th March 2006

Hello,

Everything is ok with me. I'm getting improved day by day. I've been taking abxi for only three months, despite of this I'm very pleased on effects of CAPi. Tomorrow I'm starting Flagyli pulse. Hope I'll feel better and stronger.

I wish to share a situation. Since I've born my toenails has a serious problem. Their structure is too strange and my toenails are very hard. It's very difficult to cut them. May this situation be related to Cpni?

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Wish the best for you.

 Oguzhan

Myopathy diagnosed on November 1997. Started Wheldon CAP on 07.07. 2008. Have been taking abxi since 09.05. 2008. Now I take Doxyi 100 mg. twice a day, everyday and Roxyi 150 mg. twice a day, everyday. Metroi (Fl

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Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 6.5 Wheldon CAP 16th March 2006

Hello,

Yesterday I made a CK test. Result is almost same: 1167

Normal is 39-308. What does that mean? My last result was 1057 and at this result I didn't take any antibiotic. I wonder if the abxi useful for me or not? 

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Wish the best for you.

 Oguzhan

Myopathy diagnosed on November 1997. Started Wheldon CAP on 07.07. 2008. Have been taking abxi since 09.05. 2008. Now I take Doxyi 100 mg. twice a day, everyday and Roxyi 150 mg. twice a day, everyday. Metroi (Fl

I'm not a scientist and I don't know much about creatine K, but the little I know implies that there is some muscle breakdown.   Ella had high creatine levels when she had her last severe relapse.

In your case it could be that the antibioticsi are killing off infected cells in your muscles.   

I suggest that you post this question as a seperate blog, because that is how people get to know what your question is.

Start a new blog with the question as a title.

I can do it for you if you like....

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Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 6.5 Wheldon CAP 16th March 2006

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Louise  CFSi,CPNi+/Bb+(Lyme) Cholestyramine 1-2 pks @ HS for Porphyriai +fattyEndotoxins HS PRN, Wheldon CAPi 6/07,all supps, Doxyi 200QD, Roxi 300BID, Tinidazole 500 BIDx20day Pulses, VitD3-10,000IU,Iodoral25mg,SAM-e100mgQD+B-vits, Pyruvate3.75Gm at 1PM

Hi Louise,

CK means Creatine Kinase. This is a muscle cell enzyme.

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Wish the best for you.

 Oguzhan

Myopathy diagnosed on November 1997. Started Wheldon CAP on 07.07. 2008. Have been taking abxi since 09.05. 2008. Now I take Doxyi 100 mg. twice a day, everyday and Roxyi 150 mg. twice a day, everyday. Metroi (Fl

Michele,

That's a good idea to start a new blog on this question. Thank you but I may start the blog about CK. See you.

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Wish the best for you.

 Oguzhan

Myopathy diagnosed on November 1997. Started Wheldon CAP on 07.07. 2008. Have been taking abxi since 09.05. 2008. Now I take Doxyi 100 mg. twice a day, everyday and Roxyi 150 mg. twice a day, everyday. Metroi (Fl

Hi,

I have another question. Does Cpni enfection cause tinnitusi and dizziness? I have tinnitus on my right ear and dizziness since February 2006.

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Wish the best for you.

 Oguzhan

Myopathy diagnosed on November 1997. Started Wheldon CAP on 07.07. 2008. Have been taking abxi since 09.05. 2008. Now I take Doxyi 100 mg. twice a day, everyday and Roxyi 150 mg. twice a day, everyday. Metroi (Fl

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Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 6.5 Wheldon CAP 16th March 2006

Oguazhan, Just to share my experience with CK levels. I too, had very high cpk and ck level before I started treatment. My neurologist thought I might have myositis, which is severe inflamation of the muscles that cause myopathy weakness and vertigo. I had a muscle biopsy which did show some inflamaton but not conclusive with myositis. I have learned after being diagnosed with cpni, that it can effect every area of the body, muscles,skin, blood vessels. 

I started taking small doses of prednison and the levels reduced significantly, although it was only masking the problen, which is cpn.

Maybe to give you a bit of encourgement, I am now on my 8th month on this protocol and the weakness and vertigo has improved. I wish you well with your treatment and a ray of hope.

              Bonnie

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started Wheldon capi 4/21/08 for Cpni, CMV, EBVi, CFSi. Currently on: all supplementsi,Doxy200, added Azith.250mgs M/W/F on 6/30/08. Naci up to 1200mgs.as tol.Vit.B12 injections daily, cholest. prn. Start Tinii. in Jan. if all goes well.

Hi :)

I have very nice news. Today I've exercised my legs 200 times in the day. At the the beginning I could exercise 6 or 7 times. I'm also in a diet so everyday I exercise my abdominal muscle. Today I've done 150 times, at the beginning could do just 10-15 times :)

___________________________________________________________

Wish the best for you.

 Oguzhan

Myopathy diagnosed on November 1997. Started Wheldon CAP on 07.07. 2008. Have been taking abxi since 09.05. 2008. Now I take Doxyi 100 mg. twice a day, everyday and Roxyi 150 mg. twice a day, everyday. Metroi (Fl

Great news!! I really like to read about your improvement.

Keep up the good work, well done!!

So happy for you.

Best Wishes, Maria

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Cpni since sep 2006. Autoimmune thyroid,hypofunction.levaxin,b12+folic acidi.All classic cpn,porphyriai and toxinsymtoms.Not able to work.Selftreating cpninfection with AllicinMax(garlic), NACi, high vitamin D3. Also treating with LIFE system and shaktimat

Oguzhan,

You are another amazing one - you don't  give up and it's working!   Even when every day is not "the best day", don't be discouraged.  This is wonderful.

Rica

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Rica PPMSi EDSSi 6.7 at beginning - now 2. Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxyi 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli total 55 pulses LDNi Rifampin 8/08 again NC USA

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Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 6.5 Wheldon CAP 16th March 2006

Oguzhan, Thank you for keeping us aware of your improved strength.  Would you be willing to give us an update on when you started your pulses and how you have progresses with that aspect of your CAPi treatment? 

Best of the New Year to you,  Louise

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Louise  CFSi,CPNi+/Bb+(Lyme) Cholestyramine 1-2 pks @ HS for Porphyriai +fattyEndotoxins HS PRN, Wheldon CAPi 6/07,all supps, Doxyi 200QD, Roxi 300BID, Tinidazole 500 BIDx20day Pulses, VitD3-10,000IU,Iodoral25mg,SAM-e100mgQD+B-vits, Pyruvate3.75Gm at 1PM