Any suggestions?

Hi,

I am really bad with computers and am not sure if I have the hang of this site or if I am even posting in the correct forum. I wonder if any of you out there have an opinion about my story and might share experiences. I have had CFIDSi since 1991, Sjogrens since 1995, Heart diseasei 2007 and now Ankylosing Spondylitis. I tested positive for Chlamydia a few years back by Dr. Powell and Dr. Peterson, but decided not to do anything because I am so drug sensitive and didn't think I would survive the protocol. Even though I had heart disease in 2007 with surgery, I have been relatively healthy and very active--barely noticed any CFIDSi (and I was bedridden from 1991-93). I have been able to walk fast, hike--my immunei reactions stopped and I felt great--could do everything. I attribute that to strict adherence to a gluten fr ee, dairy free diet, all organic vegetables and filtered water, no environmental house toxins and massive doses of vitamins and antioxidantsi. I have not had any NACi for over a year (I was taking it routinely with no side effects). A few weeks ago I started having severe AS symptoms and went to the doc who showed me damage after X-Ray and prescibed me a massive dose of D3 since my levels were low. I also started curcumin, boswellia and concentrated berberine. I took the D3 about a week ago. Two days later I became severely photosensitive and then all the CFIDS symptoms of years ago came on strong and I am again bedridden. I am inflammed from head to to. I am on fire. I took NAC last night and am worse on fire with heart palpitations. I am not on any protocol yet, but do any of you think this is happening from some type of Chlalmydia reaction? Any help is appreciated and I am sorry if I am posting inappropriately.

You're posting just fine! You say you were taking NACi with no side effects and quit it? Here we know, even after we finish the antibiotic protocol, that we'll be taking NAC for life, to preclude the possibility of cpni re-emerging. Maybe that is part of the problem. There are more science-minded folk who will be along shortly to answer your questions more directly. I just can't imagine not treating for cpn, though, if you know you have it. There are several strategies for starting slowly, but to not start at all? I couldn't do it, knowing what I know now. Good luck with all of this. At least you've found a place where people 'get' what you're dealing with.

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

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

Spiralgal,

D3 can be antimicrobial in effect.  I was on a protocol which avoided and depleted my D for nearly 4 yrs.  Everything I've read says to ease into increasing Vit D due to its effects it can have on your immunei system which I'm now doing to slowly bring my level of D back up.    

I think it could be too much Vit D too quickly, all at once, coupled with your chronic infection of CPni and the effects of inflammationi in your body as a result of it.

 

MPi for 3 1/2 yrs. NACi 1200 mg/2x day, Iodoral 12.5 mg, myco+ I (still) want my life back! CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Secondary Addison's

When I change what I believe I change what I do

NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 5day/1g/5 pulses, Valcyte
Supplementsi, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons

Don't believe everything you think!  

Thanks so far for the comments. I'm thinking the D might have been it, although I have taken D in the past with no ill effects. Any ideas for decreasing cytokinesi or whatever reaction I am having? I have tried Vit. C, baking soda, antihistamine and tons of water--nettle tea too.

Another question I have is why the protocolsi are so different. The Stratton/Vanderbilt/Wheldon seem more reasonable except for the Flagyli as you can work with your body and use the supplementsi to help. The Marshall protocol also makes sense to me though because I am always low on D and the docs are always trying to raise it. I think there is a connection. The MPi seems very extreme and almost dangerous to me though. Any thoughts on this? I know this thread has been addressed before, but wanted to ask again.

Also, to answer the comment as to why I haven't done anything about Chlamydia before---I was fully functional and happy until last week and had such a hard time in the early 90's. with CFIDSi.  My immunei system completely unraveled. I suffered so much. It took such a long time with IV's every week, chelation, yeast therapy, acupuncture etc.etc. to get me well. I also incurred great expense and a lot of hair brained treatments that didn't pan out and are used only by a desperate peson.I didn't want to risk going back there. This current relapse is like what I imagine a cancer relapse would be in terms of horrenously painful and scary body feelings and the re-emergence of exercise intolerance and out of control breathing problems and anxiety etc. etc. I have pursued alternative ways to deal with Cp including Lauricidin, berberine and high antioxidanti therapy. I guess I thought it was at bay. I do have all the classic diseasesi that Cp is implicated in though and that has been on my mind for a long time.  I feel so much more educated about this stuff than I did in 1991, but still am at a total loss here.Lastly, what exactly does the NACi do for Cp? Like I said before, I took it for years and years with the only symptoms being a runny nose.

Thanks so much for your responses so far. I so appreciate this as I am freaked out to say the least.

welcome,

you are in a bit of a pickle I see.  It would seem like the D3 has stirred up the CPni as it is anti bacterial.  We usually ramp all these things up slowly.

This is the nature of the CPn beast, it is insidious & may be behind your previous issues.

You need to get some charcoal, cholestrymine, yaeyama chlorella, Emergen C flushing, the vitaminsi here to support your liver & detoxing organs( I use Chitosan but I have no issues with shellfish) .  The body needs help to get rid of all those toxins the bacteria has left behind when you slayed them.

Killing the CPn on the protocol & dealing with the toxins can be managed as you just do what you can & take the time you need.

Keep us posted as to your recovery

CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpn, (insomnia - melatonini, GABA, tarazadone, triazolam, novocycloprine, allergy formula, 3 gm tryptophan), Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse8 750mg 4day,375X1 3-24-8

CFIDSi/ME, FMSi, MCS, IBSi, EBVi, CMV, Cpni, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplementsi+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyli/day-5 days<

  Thanks, I have some charcoal, but not sure how to take it.  Can you suggest?  I am not sure about the cholestrymine because my doc probably won't have anything to do with it and because I had heart surgery last year and need to watch lipid levels etc. I have xanax which I just took and has calmed me down some.  The burning was almost impossible to take. Anything else you can recommend?  I have powered C which I am taking, but I thought you couldn't take any supplementsi near charcoal.  Have any of you used apple pectin?

Also, can you elaborate more on how slowly is slowly and how sick you really have to get on this protocol?  I am super scared about this.  Ever since the CFIDSi ravaged my immunei system, I am super sensitive to drugs and side effects.  I always have to take pediatric doses.  My stomach is very sensitive and for the rare cases I need to take antibioticsi, I always get stomach spasms.  I take DGL for stomach as well as probiotics, but wonder how you guys deal with such long term antibiotics.

I am so glad for your help.  Each post is super helpful. 

Spiral,

I'm new here myself because something happened which caused me to feel like I relapsed while on the MPi last year. It scared the bijeebers out of me as well. I don't want to say what exactly happened since it's speculative, just that you know I can relate as to how you're feeling. I'm working on building myself back up slowly with the supplementsi and NACi right now too.

One step at a time. Wink

Just go slowly and don't add anything until you feel ready. Take all of the advice given here. These folks rock!

As for charcoal, I've been taking 12 caps (someone said that was the dose) at night on an empty stomach away from all other foods and supps. It helps with the fat soluble porphyrins which I can relate to as bowel issues. Also, the chlorella helps with that and you can take that anytime.

Have you looked at the list of secondary porphyrian symptoms on THIS page? This sounds like it may be the problem you're experiencing.

 

MP for 3 1/2 yrs. NAC 1200 mg/2x day, Iodoral 12.5 mg, myco+ I (still) want my life back! CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Secondary Addison's

When I change what I believe I change what I do

NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 5day/1g/5 pulses, Valcyte
Supplementsi, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons

Don't believe everything you think!  

Welcome Spiralgal, Does sound as though Cpni has been with you for a while without symptoms. That is in the nature of Cpn, it can stay quiet until it gets the upper hand and then you know all about it. Taking D and NACi and getting a reaction are sure signs that you have a Cpn infection that needs treating. It won't go quietly....

Charcoal at night, even in the middle of the night if you wake up to use the bathroom is good.

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

Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.

Thanks everyone...I do have a couple more questions though.  I am really interested in knowing how slowly you can go on the protocol.  I know I need to find a doc again to help me, but would love some ideas about this. I am really scared that I will loose any quality of life indefinitely.  Also,  I have had the autoimmune issues and heart diseasei, but no other symptoms for 15 years.  I also have taken NACi for years without event and have taken large doses of D in the past with no event .  Has anyone else had a somewhat normal life after many years of suffering only to relapse  hard unexpectedly? 

 Reenie, can I ask you (if appropriate and if you are comfortable) why you decided to stop the MP?

Thanks again! 

Welcome Spiral, I have been thinking about this issue where Cpni submerges for a period of time. My younger sister is also infected, I believe. She has had many Cpn-related illnesses. However, she went on a strict macrobiotic diet and began to improve. She won't hear anything about going on the CAPi. Here's my theory: 1. Cpn uses cholesteroli as a "raft" of sorts to get into the cell. 2. Such diets starve the organism of it's needed cholesterol 3. The Cpn infection goes into hiding in it's Cryptic mode. It is still there, waiting for better conditions to come out and reproduce.Inflammationi goes down and symptoms seem to subside but the organism is ready to be triggered again. 4. This may be why the very restrictive MS diets seem to help some people. 5. Tocotrienol E does the same thing by restricting Cpn access to cholesterol BTW I am not a medical person, but I enjoy learning and making connections. I'm sure someone who knows more than I will comment. But it makes really good sense especially when I have observed these situations in my own family. My own infection simmered in the background for years before becoming a real threat because I was always on a diet that was fat restricted and mostly vegetarian. Welcome to the healing path. Raven CAP since 8-05 for Cpn and Mycoplasma P. for MS and/or CFSi Also EBVi and HHV6

Feeling 98% well-going for 100. Very low test for Cpni. CAPi since 8-05 for Cpn/Mycoplasma P.,Lyme, Bartonella, Mold exposure,NACi,BHRT, MethyB12 FIRi Sauna. 1-18-11 begin new treatment plan with naturopath

It submerged for me - a long time too - to poke its face up out to the sky like a mole once more.  One of the reasons CPNi theories interested me was the idea it could go into 'hiding' phase (though still alive and having a negative effect), as this seemed to match my life history.   I would add that I was never entirely 'well' during the 'well' years.   Raven's ideas are interesting re. diet and so forth: a peaceful, relaxed life with excellent food I am sure can contribute for the reasons you suggest re. cortisol and inflammationi, etc.  I can sympathise with your great expense and energy on odd alternative therapies, Spiralgirl, but if CAPi is suitable for you, you won't need to do them anymore.

 

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.

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.  Changed to Tinii in December 2008.  Stopped CAPi in February 2009 at pulse 16.

P.S.  The Vitamin D3 reaction you think you may have had was interesting.  I feel sure I have read here that it has an anti-chlymadia (and therefore die-off!!!) effect.  Once I have stabilised after my latest pulse I am going to check again myself - I strongly suspect it has such an effect for me.   Perhaps someone else will illuminate further - or you could try searching on the site (box in top right corner).

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.

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.  Changed to Tinii in December 2008.  Stopped CAPi in February 2009 at pulse 16.

Welcome spiralgal.... You are in the right place and there is much information and support here.  Re the supplementsi and charcoal -- if you go to this (click on "this") it gives a list of the recommended supplements and why you should take them.  Probiotics are part of this protocol......

I, too, now have CFIDSi and FM --  I had a very difficult time starting this protocol BUT YOU CAN TAKE IT very slowly. 

There is a perspective you may wish to rethink from your statement above:  CFIDSi did not ravage your immunei system -- the CPNi or other virus/bacteria probably CAUSED YOUR CFIDS.  I know many who have CFIDS perceive it as a disease in and of itself, I, personally, believe CFIDS is a result of a combination of "things" in the body.

Also, my personal perspective from the comments of this website, are the people with CFS do respond/react differently than those with MSi.  You know your body and that is an important key in this protocol --knowing what you can handle.  As long as you perservere, it's not a race.... Some here started right off with dual ABXi and were pulsing in a few months! 

It took me 2 months to build up to 100 mg of doxyi 2x's per day!   It doesn't matter..... what is important is realizing that CPN in your body  -- left  untreated does serious damage. 

I have been on the protocol since april of 2007 and just did my first pulse a week ago.  You can do it and everyone here will help.

Jeanneroz ~CPN 4/2007; HHV6, EBVi, CFIDS/FM- diagnosed: 6/07; IBSi, prior kidney infectionsi, food allergies, hypothyroid (RAI for Graves in 1998), Adrenal issues; prior bronchitis/sinus problemsi. 200 mg/doxy daily & 250 mg AZITH M/W/F, supplmnts

JeanneRoz ~ DXi'd w/ CPNi 4/2007; 6/07 -"officially" dx'd w/CFIDSi/FM; also: HHV6, EBVi, IBSi-C, 100 Doxyi:BIDi; 500 mg Biaxin BIDi; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni

Thanks again for all the support.  I am wondering if a lot of you out there are bedridden or housebound during this treatment or if you live a somewhat normal existence while on the protocol.  I ask this because I see that a lot of you have been doing this for many years now.

 

Thanks 

Most of us try to carry on with as normal a life as possible.   We have some people on disability and at least one is bedridden.   The Wheldon protocol is formulated to help people carry on with normal living...

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

Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.

HI again,

 

I just read that it can take months to rid oneself from excess D3 if that is what has put me in this bad shape so suddenly.  Any thoughts on that?

 

Also, thanks for the lifestyle question.  Not that anything could be worse than this right now.  I was power walking and doing everything 2 weeks ago--only arthritis pain and now am bedridden.  It is nice to know that there can be a more gentler approach.  I still wonder if you guys are getting better out there or are you staying on the protocol with the hope of getting better someday.  How do you know when enough is enough?  Do you get PCRi tests?

 

Thanks 

Yes, we have been on the protocol for "many years" because that is how long it takes. Many of us were very, very bad when we began and are now living a near-normal life. I'm sure there are those who could not stay with it long enough. I bagan in 2004 and continued on an ever increasingly fast downward path for 8 or 9 months. Then one day I realized the fog was clearing and I was improving. My arthritis is ALL GONE now. I wrote about it in my blogs last year. It took months but it was part of the recovery.

 

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 50 pulses NC USA

3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.

I have never missed a day of work due to the antibiotic protocol in the thirty months I've been on it. As Michele says, it's designed to be as unobtrusive in your life as it can be, while still being effective. Too much bacterial kill at one time raises its own problems, so slower is sometimes better in the long run. When are you finished? When you're finished. Veressv asked this question only three or four days ago, I believe. Each of us is different, with different bacterial loads and locations of cpni deposits and different genetic makeups. When you're no longer having reactions to treatment and you're no longer seeing improvement, then you can consider intermittent treatment. (Even that's a crapshoot, as I'm noticing one particular improvement when I thought all progress had stopped. Tests are still unreliable, so no help there.) It won't be in a year and might not be in two years or three, but as time goes on, you will be able to judge for yourself how well you're doing and what your body needs.

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

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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