Cpnhelp.org

Elaine- It would help to post a bit more detail about your indications for Cpnⁱ. Did you have reactions to NACⁱ? To the antibioticsⁱ? Is there any of your symptoms the antibiotics seemed to help? We don't have any folks on the board treating Parkinsons with the CAPⁱ, so we don't have experience with whether Cpn can be involved, but response to the antibiotics might tell something.

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CAPⁱ for Cpnⁱ 11/04. Dxⁱ: 25yrs CFSⁱ & FMSⁱ. Currently: 250 aithromycin mwf, doxycycline 100mg BIDⁱ, Tiniⁱ 1000mg/day pulses; Vit D2000 units, T4 & T3, 12mg Iodoral

Hi Elaine, my father has Parkinsons. I think he has cpnⁱ. There are no doctors here that treat with CAPⁱ so I put him on vitamin d3 and allicin. First he gets worse but then I see some improvment. Just upped his d3 to 4000iu and he got dieoffs right away. I think he will get better if he stick to d3 and allicin.

Sorry dont know whats best for you to do with stopping abxⁱ or restart.

Just wanted to write that there are more people with Parkinsons trying to get better by killing cpn. Since we cant get abxⁱ we try with d3 and allicin.

Have you tried NACⁱ and did you then get the NAC-flu?

Best Wishes from 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

Jim—sorry it’s taken me so long to respond, but typing and sitting in a computer chair is a monumental task for me, so it takes me quite awhile! Actually, I first began the CAPⁱ treatment in June of 2007 by a doctor who agreed to prescribe abxⁱ but was not willing to work with me; that was before my diagnosis and I thought I had MSⁱ. I also started NACⁱ. After a couple of weeks I experienced one day where I felt amazingly better, then I was back to the same. Early on, I had a few red patches on my skin and much of the time had periods of feeling very wiped out or just general malaise, but by September I noticed I was doing more things and generally feeling better. I never experienced any flu-like symptoms. Neither my PC doctor nor neurologist was interested in treating me with the CAP, but the neuro gave me the name of a nutrition-oriented doctor who I decided to go see; she put me on glyconutrients and other supplementsⁱ but did not want to prescribe abxⁱ. After a few months I was doing a little better, but then started a rapid decline. It was when I got really bad that I put myself back on abx. I have noticed no improvement in any symptom and have continued to worsen; I usually felt the worst the first couple of hours after taking the abx—a general malaise and wiped out feeling, but never any flu-like symptoms. But I am considerably worse since I went off the abx so I’m wondering if I should get back on them, and if so, whether it would cause any harm to start up right away.

I thought this was worth trying because on the page titled “Diseases associated with Cpnⁱ: the exhaustive list” it listed “Hypokinetic movement disorders such as Parkinson's disease.” Also my symptoms began soon after I had a bout with pneumonia a while back.. Hope this helps..thanks for your help.

Maria, thank you for your encouraging words! I’ve been searching to find someone else on this site with Parkinson’s. Glad to know your dad is improving on the allicin—I may give it a try. I’m already taking 6,000 IUs of D3 but am thinking of increasing it. I just started taking an enzyme called NADH which is supposed to help Parkinson’s by raising dopamine levels. If you want to check it out, the website is www.nadh.com. Maybe it will help your dad..

Best wishes,
Elaine     

Elaine, My opinion is, the antibioticsⁱ can't hurt you and probably will help you, so get back on them.

Even if you're 'only' wiping out cpnⁱ, you're better preparing your body for other battles by being rid of cpn. Please remember it takes years for some people to achieve marked improvement and improvement can't even begin until you kill the bug.

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The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Elaine

My feelings are in MacKintosh's area - these are not dangerous drugs and if you were better while on them, go back - even add some.  I am currently on five abxⁱ and though I feel the impact, I know they are accomplishing their work.  Not everything is known about either of these diseasesⁱ, though the MSⁱ one imay be more nailed down than Parkinsons.  P. may fall under this umbrella at least partially.

Rica

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3/9 Symptoms returning. Began 5 abxⁱ protocol 5/9 Rifampin 600, Amoxicillinⁱ 1000, Doxyⁱ 200, MWF Azith 250, flagylⁱ 1000. Caffeine pills with AM abxⁱ Began Sept 04 PPMSⁱ EDSSⁱ 6.7 Now good days EDSS 1

If I were you I would see a lyme literate Dr. (who can also test you for Cpnⁱ, Mycoplasma etc) ASAP. You can find one in your area on Lymenet. You may need IV treatment to begin with and then move on to orals. Do not wait! The sooner you get a handle on this the better chance you have of recovering. Be well. Chris

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CAPⁱ since 11/06 for Cpnⁱ, Lyme, Bartonella, Babesia, Myco P, CMV, HHV-6 infectionsⁱ. Rifampin 600mg daily, Zithromax 500mg daily. NACⁱ 2250mg daily. All other supplementsⁱ. Now Bicillin LA 2.4 mil injection weekly.

All of the received advice is oh so relevant. Please listen . It'll be worth it.

Mycoplasma, Katman and MacIntosh - All know and have lived what they are talking about.

Loulou

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diagnosed MSⁱ Jan.2000 ,  chronic neurological lyme disease Nov.2002.

doxyⁱ 100 mg. 1BID. roxyⁱ.150 mg.? BIDⁱ,adding rifampin soon, pulsed tiniⁱ. every 3 weeks, as of oct.17/08, rifampin,naltrexone (LDNⁱ),NACⁱ, nystatin, major wheldon supplemrnts daily,

Thanks for the advice, all of you. I do need to get to a doctor (lyme literate if I can find one) but I have become too debilitated to manage a visit right now. It was my hope that the abxⁱ would at least get me well enough to see one. I am pretty certain I need the abxⁱ, but my main concern is whether the bacteria will become stronger and more resistant if I start back this soon (five days). Maybe I shouldn’t worry. Anyone have any thoughts on this?

Thanks again for all of your help.

I agree with the excellent advice from the very knowlegeable folks here in this thread. I just wanted to add a thought from my personal experience. I don't have Parkinson's but I do have a great deal of neuropathy. I did not have remarkable improvement until I began taking Tinidazole pulses with the Doxyⁱ & Azith. Just a thought. Maybe you just have not taken the right combo yet. Don't give up!  Miying

 

 

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2002:FM/CFSⁱ. 2008-2009:CPNⁱ - CAPⁱ/5 pulses. 2010: BB - Restart CAP: 400Doxy/250Zith-MWF. Plan: 3/29 Tiniⁱ pulse. Lauricidin/Yaeyama/all supplementsⁱ recommended/firⁱ sauna/2,000 IU vit D. Stop charcoal.

Miying,

Thanks for the advice and encouragement! I've been wanting to try the pulses but am afraid to do this without a doctor. I think I will go back on the doxyⁱ and arith for awhile longer and see if I improve enough to go  to a doctor. Any danger doing the pulses on my own if I have to? Thanks again..         

Elaine

Thanks Elaine for telling about NADH. Please let me know if you think it helps.

Are you taking B12 and folic acidⁱ? My father had very low b12 so that will help him too.

A lot to read here about b12.

Best Wishes and good luck with your treatment, 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

I am a bit late to catch up on this discussion but I've just read sth very interesting:http://hdlighthouse.org/see/drugs/minocycline2.htm

My guess is that if minocycline helps than Parkinson should be treated with abxⁱ

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Diagnosed with MSⁱ on March 2009, started CAPⁱ on Jan 2010. Doxyⁱ 200mg- Roxyⁱ 300mg- NACⁱ and all major supplementsⁱ.