Cpnhelp.org

Allergy issuses can cause a huge amount of symptoms comparable to many suffered by cfsi people. My father owned an allergy lab and he told me many stories of people with fatigue, pains, swelling., nausea, constipation, sinus/breathing probems etc that were caused by different allergies. He treated a lot of people for molds/fungus/candida and it mad a big difference. Of course this has nothing to do with CPNi but maybe she thinks you have allergies. barbaraNAC and glutathione push for years Lots of supplementsi (all supplementsi in protocol)IV vitamins b1-12,C50gm,magDoxy200 10-/14/07, NAC 2400Doxy200mgAzithMWF10/29/07 MS flagyli 1day 500x2 11/23/2007

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NACi and glutathione push for years all supplementsi in protocol)IV vitaminsi b1-12,F10/29/07 roxy300,doxy200,rifampin300aziyh mwfMS flagyli 1day 500x2 11/23/20074th pulse 2.8.081500mg 8days 7/08 finished 10th pulse on 300 rifamp bid, doxybid 7/2008

Actually, Barbara, it may have a lot to do with cpni! I know of two people who are on the protocol who have reported their allergies to cats, dogs and wool have disappeared while on abxi. Both said maybe their allergies were CAUSED by cpn and are amazed at this turn of events. One is a young grandmother who is thrilled she can babysit at her daughter's home now, as the cat and dog always kept her away. Once again, while we can treat the manifestations of cpn (swollen joints, chronic sinusitis, dizzy spells, restless leg and maybe even allergies), treating the cause/source of the manfestation (cpn) is far more productive.

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

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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

I had tests done for food allergies and proved sensitive to dairy, wheat and a number of less significant items.   Dairy does not appear to be a problem for me any longer two years into Cpni treatment, although wheat still is to some extent.

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 5.5 Wheldon CAP 16th March 2006

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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

"maybe their allergies were CAUSED by cpni..."

I've wondered about that myself. There seems to be so many people who have allergies or "auto-immunei" disorders of some type that's it hard for me to believe our immune systems malfunction so often for no reason. How did we survive as a species with such poorly designed immune systems? But I don't think they are poorly designed! Quite the opposite. Our immune systems are seeing and fighting real threats we just haven't recognized or discovered yet. And it would seem having a chronic infection, which is keeping your immune system constantly on edge and exhausted, would eventually cause it to go awry. In the old days your immune system either won the fight and you recovered, or it lost and you died. Nowadays we have so many medications that treat symptoms that allow both immune system and invading bug to survive for years, all the while waging war in our bodies which, as you know, eventually leaves our bodies looking and feeling just like a war zone.

Asthmai, chronic sinusitis/rhinitis, chronic tendonitis, hypothyroid. Jan 9, '08 started Azithromycin 1000mg/week.

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GFAi - asthmai, sinusitis/rhinitis, tendonitis, low back pain, hypothyroid. Started azi 1000mg/week Jan 9, '08. Increased azi to 250mg/day, added 20mg Benicar daily Mar 13, '08. First Flagyli pulse started June 30, '08. Added Doxyi 200mg/day Aug 16.

I have had worsening allergies since an illness (my mother doesn't remember what it was) at age 9 and had allergy shots for over 20 years. Then I was tested again and told I had no allergies. Last year I was tested once more and told the same thing yet the allergic reactions to substances in the environment and foods was obvious. What the allergist said was that they test only for histamine related allergies since that is all they can treat. But there are allergies that have to do with an overreactive immunei system.

 

PPMSi-misdiagnosed 2001-diagnosed 2006. Minocycline 7 mos.- resulting bronchitis 5 months. Talked Hopkins neuroi. into: HRT (estriol and progesterone as neural protectant re Voskuhl,UCLA).Wheldon CAPi 3/2/07 - 200 doxyi; azith MWF. 4 pulses. Rockville,Md. Loo

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PPMSi-misdiagnosed 2001-diagnosed 2006. Also maybe csf and Lyme -- who knows?! Minocycline 7 mos.- resulting bronchitis 5 months. Deserted by Hopkins neurology dept. and going to private md. out-of-plan. Wheldon CAPi 3/2/07 - 200 doxyi; azith MWF. 5 pulses.

my "multi food allergy"

Hi there..firsts..I'm sorry for my not correct grammar..I'm not english..

I have problems more than 8 year..but the true is that maybe I live with chlamydia pn. my whole live:-(.

8 years ago I started to have problems with diary products..my allergy tests were negative..so ok..just intollerance. but it went worse and worse..I can't eat anything where is something from milk..wheat..sugar..now (2 yers already) fruits and most of vegetable..no coffe, alcohol (thats no problem), drinks..just water and herbaltea. and btw..I still feel sick, tired and 40 years older..

but..all imunology tests were negative..I was on all possible "nice"investigations"..endoskopies etc.. and..just NOTHING.

finally..as of january 2008 they made me that great test and I have CPNi. I would't beliewe it can cause my problems:-(.

Now I made the first Metronidasole puls..and I believe..

What I can say after Doxyi and Azithromycin..I feel just a little bit better..but if I feel sick - it's much faster over..so that's good:-)

Yes..it seems as the allergy..but it's CPN!

gabriela

 

I've had severe allergies since I was an infant and spent a fair bit of my childhood hospitalized from them. I am an atopic individual and have every possible lousy symptom including skin, respiratory, mental and systemic. I'm allergic to more than I am not and have taken steroids for over 40 years, to the point my adrenals shutdown. .... so, (and my point) I am REALLY hoping that the CAPi/CPni treatment will assist me in this area.

Odd, but I'm actually hoping my problems are caused by CPn... at least then I have hope.

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Corinna. GFAi. NACx2400mg, D3x5000mg, B12x1000mcg.

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Corinna | GFAi. Wheldon Protocol: 4–8/08. Can't kill the yeast.

I don t have any real allergies, but an high Immunglobulin E (IgE) level of about 3000. I think it is caused by cpni and the reactions of my immunei system due to cpn. I know that other intracellulari bacteria like coxiella burnetti/Qfever can cause an high IgE like this. Any of you tested IgE levels?

 

Warmest regards

 

Cesare

 

 

Male 35 (Hamburg-Germany),CFIDSi, IBSi, Enterovirus, Cpn,treated Enterovirus with Inf-y,Inf-a.,Ribavirin. Started Wheldon Capi on 02/19/08, Currently NACi 2400, Doxyi 2x100, Biaxin 2x500, Metroi pulses,pyr

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Male 35 years (Hamburg-Germany),CFIDSi, IBSi, Enterovirus, Cpni for years positive. Started Capi on 02/19/08, Currently NACi 2400, Doxyi 2x100, azi 500 each day,Doxy 200, tini pulses , Oral Vancomycin for c.diff

Corinna that does not seem odd to me at all.   Any idea when you will begin treatment with CAPi?

Louise USA.CFSi.CPn Positive.BbPositive.WheldonCAP6/24/07.NACi,Doxyi,Roxi, Tinidazole Pulses. VitD-3,4000IU. Intermittent Cholestyramine 1-2 packets atbedtimewithpulses&asneeded forporphoria&endotoxinsi. 

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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

Louise, my ABXi shipped June 9, but the timeline for shipping to Canada is 3-4 weeks from departure. So likely I will begin CAPi within the next month at the most. 

I've ordered from two pharmacies, just in case one shipment does not make it. In the meantime I think I am at my maximum pre-CAP supplement intake and am certain that I am experiencing CPni die-off because of how I feel with the NACi and D3. I feel awful in new ways and I experience amazing relief taking Vit C powder (I prefer orange-flavoured Sisü brand but also take EmergenC which tastes like a children chewable to me) and have almost immediate relief with the glucose tabs (I always thought folks were eating actual Smarties!).  

 

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Corinna. GFAi. NACx2400mg, D3x5000mg, B12x1000mcg.

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Corinna | GFAi. Wheldon Protocol: 4–8/08. Can't kill the yeast.

Corinna, Smarties in the US are actually Glucose guess that is why they are smarties cause the brain demands glucose to say smart.  Also a large bag can be ordered on line directly from the mfg website.  I Googled it and posted it some time ago, last October.

 http://www.cpnhelp.org/smarties_candy_rolls_usa_ 

I posted the following:

"Today I set out to find Smarties.

Should you search this topic here there are other threads.

I was looking to have improved Porphoric Regimen supplies on hand as suggest so often in the posts.   

I went to the local independent drugstore.   Glucose tablet packaged for Diabetics in a small plastic tube, yes very handy and protable.   10 tablets/ each tablet 15 calories/4gms Glucose price 1.99 US.  that is 0.20 cents each. 

At Walmart same number of tablets in this standard formulation 1.28/10 tablets/Not much improvement .12cents each better but still..  In in bulk packing 50 tablet/4.78 US that is .09 cents each.

Now for the cost comparison of the Made in USA CE DE CANDY , Inc., Union NJ 07083

www.smarties.com   

smartie costing analysis: each "penny" roll Dextrose based packet( superior as it is used as an IV source of energy)  is 25 calories/6gm Glocose   price 1.86 for 60 rolls each roll approx two of the glucose tablets. 120 doses divided by 1.86 equals 0.0155 cents per dose."

Louise USA.CFSi.CPn Positive.BbPositive.WheldonCAP6/24/07.NACi,Doxyi,Roxi, Tinidazole Pulses. VitD-3,4000IU. Intermittent Cholestyramine 1-2 packets atbedtimewithpulses&asneeded forporphoria&endotoxinsi. 

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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

Thanks Louise! I was a tiny bit disappointed when I saw they weren't the 'when-you-eat-your-smarties-do-you-eat-the-red-ones-last?' type. I was picturing all these grown ups with their bags of smarties at the ready. :o)

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Corinna. GFAi. NACx2400mg, D3x5000mg, B12x1000mcg.

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Corinna | GFAi. Wheldon Protocol: 4–8/08. Can't kill the yeast.

HI Cesare, yes the only thing which my imonolog dodn't understand was my IgE - more than 250 (normal is 0-100..yours is really extremly high!) as all my tests were negative. But she never tried to find out why it is so. She just said - you are not our case. You're not allergic..:-) So..I I have CPNi ..what else could it be??

Gab welcome! When I saw you on the newcomers list, I wondered with great excitement what country you are from. About your English - it is MUCH better, I think, than any of my (or most Americans) second or third languages. You have no need of apology. As for C.Pn., congratulations on finding us and beginning our great adventure.

 

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 51 pulses NC USA

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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

I can't read any of the posts - without some spacing every few sentences, my eyes see only swirls of grey. However, the headline caught my attention. This may have been mentioned somewhere in all the comments but, in case this offers some insight: my former porphyriai doctor saw a clear connection between porphyrin overload/damage and the chemical sensitivities of CFSi and MCS patients. He believed that all MCS patients had some type of chronic porphyria. As well, much study has been given to chemical sensitivities by researchers with the CFIDSi Association. Their work in showing that the excitatory MNDA receptors are raises and if they could be lowered, the reaction to chemicals would dampen as well. Magnesium is one of the best remedies as it detoxes and also calms down the NMDA receptors. Still, the causal link can still be excess porphyrins, and a dysfunctional Cyochrome P-450 liver detox pathway in general, among other things. Of course, here in the U.S., anyway, we are bombarded with hundreds of scented products a day - that is not good for any body and some of the sensitivities can be a brain reaction to the toxic stew - even for someone with a healthy liver - no person should be exposed to all these toxins. -

Is there a systems problem with spacing ?? I made a point to space my sentences for easier reading in the above post. I put a space line every two sentences and they disappeared. All the words are now squished together. I hope this can be corrected. Who can read this stuff? Am I the only one who can't ?

Keebler, Thanks for the info on the Magnesium. --------

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Corinna. GFAi. NACx2400mg, D3x5000mg, B12x1000mcg.

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Corinna | GFAi. Wheldon Protocol: 4–8/08. Can't kill the yeast.

Bug alert: code is showing up in the messages.

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Corinna. GFAi. NACx2400mg, D3x5000mg, B12x1000mcg.

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Corinna | GFAi. Wheldon Protocol: 4–8/08. Can't kill the yeast.

I have had worsening allergies all through my life - and developed ME a few years ago. In my own case my allergies were actually caused by a roundworm infection which is currently associated with ME - http://members.aol.com/SynergyHN/roundworm - I have treated it now with a course of ivermectin and now have no allergies at all.

I would suggest if you have alleries and a ME/CFSi diagnosis get tested for cryptostrongylus pulmoni - as 64% of patients are thought to test poisitive for it

Paul UK.CFSi.CPn/Crypto/Bor. DrWright CAPi Apr08. Ivermectin.May08.NAC1200mg.Jun08.Doxy100mg.

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Paul UK.CFSii.CPni/Crypto/Bor. Ivermectin.May08.NAC1200mg.Doxy200mg.Azith250mg(MWF).Omeprazole40mg,Flagy pulses 800mg/