Two steps forward thr3e back

I have been moving along with my medications at a snails pace but what has been exceptable to my system. When I first started the capi the NAC had me so sick I was unable to function at all so I went ahead and started the Doxyi. with some difficulty but tolerable and moved onto the Azithromycin, M/W/F.

My doctor insisted that I start the NAC at my own pace but it needs to be added to kill the EB'Si. So, once again two weeks on only 1200mgs. the symtoms of nausia, dizzy, yuck flu feeling has stopped me in my tracks. The inflamation has made it hard to walk or function at a 4/10. Then to add insult to injury I have had to hold the Azithromycin due to overall illness.

I know the EB'S  are at very high levels for me and the importance of killing the cpni in ALL the phases,but what to do at this point? 

Continue on the NAC and try to titrate? or stop at 1200mgs. and again start the Azith.?          Help anyoneYell

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started Wheldon capi 4/21/08 for Cpni, CMV, EBVii, CFSii. Currently on: all supplementsii,Doxy200, added Azith.250mgs M/W/F on 6/30/08. Naci up to 1200mgs.as tol.

When I started five years

When I started five years ago, NACi wasn't used.  Amoxicillini was, but David decided to use only doxycycline and roxithromycin then pulses of flagyli as this does clear everything without adding another antibiotic.  It worked with me because when I eventually started NAC, the only reactions I had was a runny nose for about three days.  NAC doesn't kill anything, it just does this:

"N-acetyl cysteine, which, being a thiol antioxidanti, is a good candidate for the reduction of disulphide bonds in EBi coating proteins. It is readily available as a health supplement without the need for prescription."

(Taken from here: http://www.davidwheldon.co.uk/NAC.html

The elementary bodies are stopped from reproducing by the bacteristatics, then are eventually killed by flagyl pulses, so better to stop the NAC for now and restart azith.................Sarah

An Itinerary in Light and Shadow

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Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after nearly four years, three of which intermittent.   Still slowly improving and no exacerbation since starting. EDSSi was 7, now 2, less on a good day.

horses12, I feel the worst

horses12,

I feel the worst effects from the tinidazole pulses and not too much from the minoi/zithi or the NACi so I believe I have more of a cryptic load than anything and this may be true from my past use of low dosed antibioticsi on the MPi.  

So with that in mind, using myself as an example... 

I feel that doing the parts of the CAPi that are causing me the least problems will still reduce my load.  I realize it's important to get to all of the phases of the CPni but as long as you're doing something to start with I think you'll eventually get to where you can do all of the phases.  

For some folks, NAC alone with other supplementsi like D and iodine (although not part of CAP officially) cause plenty of die off.  IMHOi, I think whatever part of the CAP you can handle is best until you work your bacterial loadi down some vs being too ill to proceed.  Eventually you will be able to do all phases but you have to find what works for you.  

I beg to differ that "NAC doesn't kill anything" although we might be splitting hairs on definition since by reducing the disulphide bonds of the EBs, you destroy them as they need this protective coating to survive outside of the cells, making them unable to advance to the RB phase and so you lighten your future load of intracellulari bacteria that way but you don't kill any of the RBs already in the cells.   

It is my understanding that each part of CAP overlaps because the CPn can change forms and that RBs can create more EBs and/or go cryptic when threatened so you do need to get to them all eventually, but it does one no good to try to do so much that it causes you to drop out and stop CAP altogether.  

I think that's basically the general consensus here.  Smile 

Here's a diagram of the life cycle of CPn and Cpn Simple may also be helpful for you to review.    

PS - It also appears that secondary porphyriai and general difficulty of CAP seems to be more pronounced for alot of us with CFIDSi so you might want to keep that in mind too.  

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NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 1g/day pulses, Iodoral 25mg, Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Secondary Addisons

Don't believe everything you think!  

I think there's something

I think there's something to be said for Sarah's strategy: in a way you are letting the EB'si convert to RB's over time, be inhibited by the antibioticsi from replicating, and killing the remainder with the Flagyli, then cleaning up after the total load comes down more. The main problem with the EB's is that they sit around and make themselves available for infecting new and even cleared host cells. They may have some inflammatory effect in the tissues, but don't steal energy or effect functioning until they enter a host cell and convert to an RB. So you can see if the doxyi/azith and flagyl brings your load down enough to eventually tolerate the NACi.

That said, if it were me and I was tolerating even 600mg a day or every other day, I'd stay with that. I'm suspicious that for some of us the presence of EB's and our genetic susceptibility to them renders it a longer process than for others. So I'm all for going after them as one can.

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CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3

Have you ever stopped the

Have you ever stopped the NACi to see if you can tolerate the doxyi/zithi better without it since you say you never felt well and just kept adding?  You might want to stop the NAC since you're already on some of the abxi and then add a smaller amount of NAC as Jim suggests, as tolerable.  

After reading your sig line, I'm also wondering if something you're taking in the supplementsi is causing you more of an issue.  You might want to stop them and try adding them back in one at a time to see if there's something causing you more die off than is tolerable on a daily basis for you.  

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NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 1g/day pulses, Iodoral 25mg, Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Secondary Addisons

Don't believe everything you think!  

Reenie, I have held off

Reenie, I have held off from taking NACi completely and seeemed to tolerate the side effects of die off well enough to function. I guess my major concern is my doctor and I feel when I do start pulsing the Tinii. my cryptic load is going to be through the roof and will cause me a lot of problems.

Today has been a real down day for me and I AM SO ANGRY WITH ALL THIS. 

Thank you all for the vent of frustration. After taking a small walk with my dog and getting outside for a while, my mood is a bit better.  I came back and read all the responses to my blog and decided to again go back on the Azith. after a few days and to try and hold the 1200mgs of NAC and not titrate for awhile.   

I'm also looking into a firi (solo sauna) as I have read about how well this has helped others who have high die off reactions rid the body of toxins. 

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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.

horses, Give yourself a

horses,

Give yourself a good 3 months time on doxyi/zithi as stated in the instructions before beginning pulses. 

You can make your own sauna if you want to save a little money or even to try it out.  HERE are some ideas from Dr Wilson. 

I simply bought two of the light bulbs and clip on brooder lamps and put hooks on the wall in my water closet. (small room with just a toilet in it) I think you could do the same setup with more lights if you have a little larger bathroom.  

I think I might add one more but for now I can just plug them into the double outlet and it works fine.  I can tolerate it for about 30 mins but I think it's because I am only using two bulbs.  Maybe when I get a little weller, I'll be able to tolerate more.  

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NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 1g/day pulses, Iodoral 25mg, Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Secondary Addisons

Don't believe everything you think!  

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