Cpnhelp.org - Chlamydia Pneumoniae Treatment

hello mackintosh,

What is immunotherapy?  For something like a dustmite allergy, most of what is available is antihistamines - the kind you take for pollen allergies, etc.

However, as far as I understand it, immunotherapy works slightly differently.  I think the principle is that you 'expose' the body to large amounts of the allergen e.g. by injection or tablets - and the body gets 'used to it'.  Something vague like that (by my explanation!).  It can work for some people, although the effects do not always last, and its not 100%.  But of course I am tired (and a little upset) that my son is going round constantly with a 'cold' and if i did it, it might work.

I am pretty convinced (on my readings on this site) that a CPNi infection is at the bottom of it.  But of course I am not sure about CAPi for children ... I have been looking at NACi for my son's age group (age 4 -8) and it says 280 mcg per day is acceptable and safe.  I may start that anyway! But the full-blown CAP I am of course more unsure about.

Thanks for your enquiry!  Hope you are feeling good today!

Blackfoot.

P.S.  On the issue of the NHS here in England.  I know there have been posts on this subject and I haven't really joined in.  I do get the impression that it is lacking in some ways.  There just doesn't seem to be much of a "can do" attitude.  My son saw a top child allergy consultant in London and we got 5 minutes of very little (after waiting 2 hours).  There just seems to be an 'accept it' attitude.  And of course I have experienced this with ME/CFSi.  People seem to have to go all out on a limb by themselves to get anywhere at all.  I have a kind GP who has been supportive in many ways - but has never even broached the subject of HHV6 (even though I have had glandular fever in the past) let alone CPN.  And I am experiencing the same thing with my son.  A different GP when I originally mentioned a possible dustmite allergy just started writing a prescription out and I had to stop her - and say - don't you think it would be a good idea if we did a test to make sure (which she reluctantly did and I felt like a 'problem' patient).  Of course we don't have to pay, and I don't really understand all the problems in the US and Canada.  Nevertheless, we do have to struggle quite a bit .... ramble over.  Have a nice day!...

x 

M.E./CFS 20 years, intermittent.  Wheldon Protocol - Started NAC and supplementsi Sept 2007. Doxyi and Roxy full dose by Dec '07.  First Flagyli pulse January 2008.

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M.E./CFSi 20 years, intermittent.  Wheldon Protocol - Started NACi and supplementsi Sept 2007. Doxyi and Roxy full dose by Dec '07.  First Flagyli pulse January 2008.

On a practical note, allergies do seem to subside whilst on a CAPi. 

But we have no experience of young children on a CAP, getting a doctor on board is hard enough for adults, getting one to prescribe for a child is going to be twice as hard...

Michèle (UK) GFAi: Wheldon CAP 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMS, 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, RRMS, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

Immunotherapy is basically just allergy needles. Small amounts of the allergen are injected into the arm to produce a positive response to the allergen without causing the immunei system to go bonkers and swell up.

In rare cases a person can have anaphalaxis to an allergy injection but it usually happens from an incorrect dose, or inexperienced administrator injecting it into the muscle instead of the skin. I have experienced anaphalaxis from allergy needle injections

In canada and england thier is an immunotherapy treatment called enzyme potentiated desensitization ( EPD ) which contains lower dose of allergens with a specific enzyme attached to it. The benefits of the lower doses with the enzyme are complicated but it has a logic. Chances of anaphalaxis are almost nil but the protocol is extensive,  and time consuming. Its basically what they use for those with enviornmental illness and chemical sensitivity.

In the usa something simular might be called LDA ? (low dose allergens), although im not sure if its the exact same working mechanism as EPD or not.

Overall... regular allergy shots are ok for dust, pollen, trees and mold, they are cheaper and seem to be somewhat effective. However thier is tiny risk of a bad reaction but this can be decreased if you follow a schedule and make sure the administrator follows proper administration.

EPD, and LDA are for people with chronic fatigue, food allergies, chemical sensitivities, autism, fibro etc etc etc. Part of the protocol involves 10 day prep of an antifungual and a very strict diet for 3-10 days as well as various vitaminsi. Its expensive, but I think it works to correct t cells that are doing stupid things and the result is making b cells better behaved.

Heres some links to EPD and LDA

http://en.wikipedia.org/wiki/Enzyme_potentiated_desensitization

http://www.dma.org/~rohrers/allergy/epd_faq.htm

http://www.food-allergy.org/epd.html

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CPNi pcri and antibody positive , treating MSi, CFSi, TMJ, trigeminal neuralgia, IBS neutropenia, pus found in facial bone, Doxy 100x2, zithro 250x1 alternate days. Metroi pulses each month.

Thanks for your replies.  Ditto, Jean, please keep us posted.

M.E./CFSi 20 years, intermittent.  Wheldon Protocol - Started NACi and supplementsi Sept 2007. Doxyi and Roxy full dose by Dec '07.  First Flagyli pulse January 2008.

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M.E./CFSi 20 years, intermittent.  Wheldon Protocol - Started NACi and supplementsi Sept 2007. Doxyi and Roxy full dose by Dec '07.  First Flagyli pulse January 2008.

My son had an appointment with Children's Allergy Consultant at St Thomas's today. He has developed a dust mite allergy and asthma. I did ask the doctor very nicely had he heard of the possible role of C. Pneumoniae, and I stated I had done a bit of research on this subject because of having ME (big mistake that!). He looked visibly irritated, oh well you shouldn't take seriously all that stuff on ME on the internet, blah blah. I said well actually there is some serious research going on in the US at places like Vanderbilt and (forget the name of the other one now). Well he huffed and puffed and I could feel my heckles rising. "Sometimes its hard to be a woman listening to male consultants dismiss you as an idiot" (can someone do that as a country and western song please?). The nurses were lovely and very caring though so it wasn't all horrible.

Anyway, the upshot was he knew nothing and had heard nothing. Maybe thats why he was annoyed as obviously consultants know everything known to man and god ...

If only I had known then of Jim's quote "Do you man to be rude or is it just your way" ....

When we came back from the testing, he seemed to have calmed down a lot and almost seemed human. We got some correct medication that we should have had before from a different doctor but didn't get, so at least he was on the ball to that extent medically. And my son WILL be having the immunotherapy treatment. it is sub-lingual i.e. in tablet form so he doesn't have to have nasty injections. Though he will have to take the tablets for about 3 years. They are expensive, he said, so will need to be ordered in advance, so we hopefully we will start in a couple of months time. I hope it works to a reasonable extent.

I haven't done the CPN testing for my son yet, it is still on my list. over and out.

M.E./CFSi 20 years, intermittent.  Wheldon Protocol - Started NACi and supplementsi Sept 2007. Doxy and Roxy full dose by Dec '07.  First Flagyli pulse January 2008.

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M.E./CFSi 20 years, intermittent.  Wheldon Protocol - Started NACi and supplementsi Sept 2007. Doxyi and Roxy full dose by Dec '07.  First Flagyli pulse January 2008.

It did no good. It did no bad. It was just a huge waste of time and energy and expense. 1-2 times per week, take a trip to get a shot, sit for 30 minutes, take a peak for reaction, then travel home.

Not to say it won't work for someone else though. I have a lot of food allergies and I understand it generally does not work for those, but it did nothing for my seasonal or aerosol allergy. I'm terrible allergic to dust mites as well and used to have my heat vents sealed up and sleep with covers under my sheets and pillow cases, but that's just uncomfortable because there is no avoiding these generally.

Now I have a full-home HEPA/Activated Charcoal/VOC filtration system attached to my furnace, as well as a mobile whole-home capacity filter on wheels that sits in the rooms I am in at the time. These filters help alot (along with a regular housekeeping for thorough dusting and vacuuming with HEPA filter vacuums). In my travels I was told by one thoughtful doctor that food allergies are common with folks allergic to dust mites, which is something I'd be mindful of.

Best wishes with finding relief for your young child,

Corinna

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Corinna. GFAi. NACx2400mg, D3x5000mg, B12x1000mcg.

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Corinna. GFAi. NACi, D3, B12, Doxycycline, Azithromycin, Magnascent Iodine, FIRi Sauna, RLT. Hurting everywhere while figuring out the proper AP measures.