Oops- REENIE- I have no personal experience in this, but have some recollection of conversations about this with Dr. Powell. One thing you should know is that people with viral loads may have a big wave of die-off somewhere between a month and three months on the program. It makes sense to me that you might want to hold off on pulsing until you know the effects of the Valcyte, but that's more a delay, not going off the protocol.You've worked so hard to get onto a CAPi I would encourage you to add the Valcyte and not go off the CAP if your system can handle it.

I think the variability in responses and relapse is why Dr. Powell works very hard to get viral and bacterial loads down through Iodoral, FIRi sauna and other methods so the antivirals and antibacterials have a better chance to work.

Getting the Cpni out of the bone marrow and immunei system takes time, and will aid in improving your body to fight the virus. I think to get into all the bone marrow you have to really stay with the full program as I suspect the concentrations of abxi in the blood are often barely enough to get into more difficult tissues. I have a suspicion that my first 4 or 5 months of, don't laugh, 500mg of Azith a day  due to a brain-fogged misreading of the Wheldon protocol might actually have been beneficial in getting immune improvements due to such high concentrations. Just a theory.

___________________________________________________________

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

Hi Jim, You do such a good job getting to so many posts and blogs.  I'm sure you mean Reenie.  I have my challenges but viruses are negatives for me thank goodness I have enough on my plate anyway!  Thanks for being a good source of general information.

Louise

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Louise  CFSi, CPN+/Bb+,Wheldon CAPi 6/07, Cholestyramine 1-2 pks @ HS for Porphyriai & Endotoxinsi PRN, Doxyi 200daily, Roxi 300BID, Tini500BIDx14day pulses,VitD3-10,000IU, Iodoral 12.5mg, {S.O.D.3/QD[KAL Brand], Pyruvate 3.75G, SAM-e For Energy Support

Jim,
I think you meant Reenie rather than Louise, but hey, at least you're not brain fogged anymore, right?

Thanks for the thoughts. I like your suggestions thinking I may do the 2nd tinii pulse as planned and then continue with M+Z without any pulsing for awhile and continue all of the supplementsi, NACi, Sauna, etc.

I'm curious though... are you saying the large die off comes from the Valcyte at the 1 - 3 month point? I'm thinking that's what you meant rather than CAPi, right? This is what Dr Teitelbaum's site says too about the Valcyte therapy, HERE.

BTW, I'm feeling a little better these days, so far, since I figured out my thyroid was lowered too much and have increased it a bit last week. I'm still titrating the Iodoral and using the rest of the supplementsi and plan to increase Vit D too before the weather turns colder/darker here in the sunny desert but that's about 6 weeks away at least.

___________________________________________________________

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

Louise,

I'm sure he meant me.   

Interesting you say your viruses test negative.  I believe my titers were worse this time testing than when I first became ill a decade ago and I believe it came from the relapse I experienced while doing the MPi although they won't even acknowledge me at that site along with many others sicker than before they began.  So sad.  

But alas, I'm here now and I believe I'll get better in time.  At least I'm not in that weakened state I was a few months ago when I was looking for answers and explanations and found this site.

___________________________________________________________

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

Reenie- (yes, I am in a pulse, but "mostly" asymptomatic)- I stand corrected. He quotes Montoya as saying "He found that all patients who improved initially flared their symptoms from about the second to the fourth weeks of treatment-" and this is what Dr. Powell heard talking to Montoya directly as well.

So, you are being shunned for going against the state religion there? I'm glad you found us, and glad you are pursuing the polymicrobial aspects of your particular picture.

If people aren't being helped by a CAPi I certainly want them posting. Otherwise how can we know what's what? We have so little data that every bit of it, positive or negative, is helpful.

___________________________________________________________

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

Reenie~   As someone who has been on valcyte for viruses, let me give you some thoughts.

I assume your doctor will be running the recommended lab tests for you while on valcyte.   Make sure your CBC, CMP and UA are done regularly.  

 I also assume that you doctor has thought carefully about what body parts are used to process the various drugs you are on.   For instance, I was recently restarted on an antiviral drug, for my viral titers went up again after valcyte.   Since I'm on doxyi (processed in the liver), my doctor put me on acyclovir (processed in the kidneys) as he did not want my liver processing another medication.   

I got hit with a herx like reaction around day 13 after starting valcyte.   I felt remarkably better at the 16 week mark.   Not well, just lots better.

 A friend of mine (Brita on the HHV-6 forum) took 11 months of valcyte while on minoi and did fine.   Of course, her labs were monitored closely.

Good for you to find a doctor willing to treat the viruses and Cpni!

Hope this help. 

Best,    Timaca 

___________________________________________________________

Diagnosed with lyme disease 3/05. Diagnosed with chronic HHV-6, EBVi, VZV, and HSV1 6/07. Diagnosed with CPni 5/08. On antibioticsi for 2+ years, Valcyte (antiviral drug) for 9 months. Currently on 100 mg doxyi bid for Cpn and acyclovir for viruses.

Timaca,

I read the link you provided to your posts on the HHV-6 board in its entirety, to the 9 page thread TWICE and a few other threads too.

I've been on another type of CAPi called the Marshall Protocol, where you restrict D and light along with TINY doses of abxi along with taking an ARB medication which is theoretically supposed to CURE you. Well, that's the theory but it didn't work for me and many others I might add, although they don't really want to hear from us over there anymore nor do they want to hear the word relapse although it often happens with many of these treatments and as Jim says, of course the researchers typically WANT to know what's happening so they can figure out why!

My Dr and I have agreed for me to do the Valcyte as well as CAP. We have agreed to use the treatment plan for Valcyte along with lab testingi schedule as laid out on Dr T's site; link in my previous post in this thread.

You've reminded me of past treatment I've been on using numerous toxic meds for psoriaisis and so I understand the rotation strategy, ie; one med cleared thru the liver (methotrexate) rotated with one cleared thru the kidneys (cyclosporine) with careful monitoring.

The one main issue I'm trying to prevent is doing only one of the therapies (viral vs. bacterial) and not giving my immunei system enough oompf to get me over the hurdle so I really want to do them simultaneously to see if I can get "weller." (a shotgun approach I use and advocated by some like Dr Teitelbaum) Sure, it would be great to actually have a cure, but I'll take "weller."

One specialist I saw that was unwilling to write me a script for the CAP said I might feel better if I took antibiotics for a year or two but would only relapse when I stopped so that was his rationale for not starting them. Apparently, he's not chronically ill.

BTW, I also believe taking all of the adjuncts will also aid and heal the immune system. I guess the amount time it'll take and how much "weller" I'll get falls under the heading, "TBD." (to be determined)

___________________________________________________________

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

> I suspect the concentrations of abxi in the blood are often barely enough to get into more difficult tissues

I have to agree with this totally. My experiences have consistently along these lines, e.g. I took my 2 doses of tinii at the same time yesterday, and I had (what I perceive to be) major bone-marrow action. Can't remember the last time I felt that. In general I do better with higher doses of antibiotics, and to get a decent kill effect I really have to ramp things up. There certainly seems to be a super-linear effect whereby twice as much antibiotic kills more than twice as much bacteria. Like Jim says, I suspect its to do with tissue penetration. The low and slow approach just doesn't work for me.

___________________________________________________________
Hunter: Don't think - experiment

Reenie,

 I too have HHV6 and Mycoplasmas.  I started the CAPi protocl but became very concerned with adding Rifampin because the last thing I need is to weaken my already weak immunei system.  My concern is that once I do this the HHV6 is going to have a field day.  My doc wants to start me on Valcyte after I hve treated the Mycoplasmas for awhile.  I looked on the HHV6 site and I am not finding many people getting well on Valcyte either. 

 Your post interested me because I was debating the Marshall protocol because their site has ALOT more people getting well than this site or the HHV6 site.  How long did you try it????  

I go back to the doc today and we are going to make some kind of a decision.  My doc did say that if you do the antibioticsi and the anti virals at once it would be too much on the system.  Either way the immune system gets trashed and all of us have trashed immune systems already.

Wish I could find an answer that makes sense and gives me hope.

Reenie~

Glad I could provide you with some reading material! 

I personally know 2 people who have gotten well with valcyte.  They have both followed up with another antiviral (valtrex, I believe) to keep the viruses at bay.  Both were ill only with viruses.

I can speak for myself and a friend.  We saw significant improvement with valcyte...and we are glad we took it.  It definitely improved our quality of life.  However, we did not get well.  We are both fighting additional pathogens.  Cpni for me, as well as possibly enterovirus, and enterovirus for my friend.   We both started our illnesses with tick borne pathogens.

Best....Timaca 

___________________________________________________________

Diagnosed with lyme disease 3/05. Diagnosed with chronic HHV-6, EBVi, VZV, and HSV1 6/07. Diagnosed with CPni 5/08. On antibioticsi for 2+ years, Valcyte (antiviral drug) for 9 months. Currently on 100 mg doxyi bid for Cpn and acyclovir for viruses.

Ellehcim,

I was on the MPi for nearly 4 yrs. I was a volunteer and part of the staff for awhile too. If you get the Conference DVDs Trevor created from both MP Conferences you'll find me on them unless he's edited me out which would be fine with me. I'm still trying to help folks answer their questions when things begin to go terribly wrong while on the MP. We have our theories which fit science but go against the MP ideology.

The info can be misleading there because once you say you're not "healing" you are removed from that site and unable to post, like myself. (I am listed there as inactive member now and can't access the threads to post or read in some of the forums)

I learned alot on that site though about chronic illnesses. I would suggest reading "The Potbelly Syndrome" which makes a whole lot more sense to me now. Oh, and don't stay out of the sun unless you have secondary porphyriai and if you do, then by all means take some Vit D! (and all of the other helpful supplementsi listed HERE) I do believe something that isn't addressed at the HHV-6 site from reading there too are the secondary porphyria issues. I would think the SP measures addressed HERE would help over there too and many folks suffering needlessly, IMHOi on the MP due to SP which is not addressed.

I'm not sure it matter which way you go but I think ultimately from what I've learned about these infectionsi is the bacterial infections cause more harm on the innate immunei system than the viruses so I think the way to go is definitely to do something about the CPni as in CAPi with or without the viral treatment. I don't think I would only do an antiviral as it does appear one would only relapse after treatment which is what I am reading.

OTOH, I think it's possible to get better if you only do CAP because your immune system may fight off the viral "henchmen" as David Wheldoni calls them, HERE.

___________________________________________________________

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

Garcia,

Just some food for thought regarding tissue penetration/concentration of antibioticsi and their effectiveness...

I think that personally the antibiotics only do a small portion of the work anyway. I learned alot over the years about how they slow the bacteria's RNA/DNA from replicating (sorry I'm not very good at microbiology) so the immunei system really has to do most of the work except with the bactricidals like tinii and Flagyli.

I think folks begin to lose sight of the fact that your own body will actually be more likely to get you well as you stick to the CAPi. What I mean is that I think (my own viewpoint based on reading) it's more the length of time you stay on CAP and take all of the adjuncts to aid your own body to slowly kill off the infected cells and slow down the bacteria from replicating.

Just like Dr Powell finds that patients do well using supplementsi to aid cell aptosis of infected cells such as with Vit D and IR sauna treatments that help with detox and infection along with the other adjuncts like iodine.

I wonder if anyone would get well using only the antibiotics without any of the supplementsi. I think it would be interesting to know if foks that have difficulty healing and/or relapse if they don't use the adjuncts to aid the immune system to work properly. I think this might be why the MPi becomes a failure over time. (no supplements at all are recommended while on the MP, not even a multi vite) OTOH, most of us that only did the adjuncts for years never got well either, so I think WE NEED TO DO BOTH in order to get well and maybe even to stay well. (CAP and adjuncts)

BTW, I found this site when I was in a weakened state of health post MP looking for supplements to help me reverse what was happening to me. I wasn't looking to find another CAP or antibiotic protocol. NACi was what I found when I was searching for info on liver support, detox and gluatathione.

My point... I think the antibiotics only do a small portion of the actually eradicating of the infection, just like I think the antivirals like Valcyte or Valtrex might be an aid in the arsenals used but that it's the whole approach which causes the greatest success to help your own body heal itself really.

___________________________________________________________

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

Reenie,

I am a new member here and have only been lurking (reading and learning) so far. I have taken an interest in your comments about the MPi because I think you misrepresent the MP in some of your statements. For instance, to say that people who "do not get well" on the MP are banned or dropped from membership is not true. It is an entirely different kind of board than this one. There are requirements to be a member of the MP study site (which is an approved FDA phase 2 study) which are not expected here. The MP is moderated by RNs and other medical professionals (doctors, PAs  etc.) whereas the CPNi is not. The CPN site is a testimonial, evidence based, experimental chat board where participants advise each other. The MP board is much different with round the clock medical professional supervision.  

Because the staff at the MP is limited and overworked, people who do not follow the reporting criteria on the MP board, for everyone's safety and to keep the integrity of the study, have been inactivated so that others who desire to do the MP and agree to its restrictions may do so.  

When joining this site (CPN) I read the disclaimers. Including:

THe administrators of www.cpnhelp.org have sole discretion to make decisions as to membership, appropriateness of postings and comments, and modifications to the website or any postings on it. 

I think that is reasonable. I also think it's reasonable that the MP board can use the same kind of discretion. Especially since it is under the careful watch of the FDA. 

There could be lots of reasons for not 'doing well' on the MP. The moderators sometimes have to eventually discontinue prolonged attempts to help those who are having trouble and do not follow their advice. I think that's reasonable too.

The MP and CPN are completely different in their approach to finding answers to chronic disease. But sincere, caring people can be found in both efforts.

I hope you do find the health that you are seeking. 

Peace,

Cherry 

Dear "Cherry Hill,"

Who are you? At the MPi site, as staff, we always used our real names. I don't see how I could be misrepresenting anyone or anything when I am only sharing my personal experiences on another protocol while I'm asking here for help. Where are you getting these quotes you claim I made? Would you please provide me a link?

As far as an FDA study, has that status been granted to Trevor and his volunteers? I think the last post I tried to write there was March 1st and was deleted along with my full thread in the alumni forum.  I would think someone would want to know the good AND bad effects of a "study participant." 

Glossary of Clinical Trials Terms

clinical trials

FDA Good Clinical Practice Program

Please don't hijack my thread here at the CPni site when I'm asking folks for help and suggestions on how to use the CAPi and adjuncts. I don't see the relevence for such a public display.

___________________________________________________________

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

Dear "Reenie"

Who am I? Hmmm, I take it you don't like my name? (I'm not "staff" at the MPi btw) Everyone talks about how friendly and open it is here. I don't feel very welcome after only trying to clarify the differences between the two studies. I'm not (and I quote you from above) "hijack[ing] your thread." I am just challenging what seem to be misstatements about the MP.

My comments were in response to 3 of your above posts as follows: 

Louise, I'm sure he meant

Submitted by Reenie on Thu, 2008-08-21 20:27.

I believe my titers were worse this time testing than when I first became ill a decade ago and I believe it came from the relapse I experienced while doing the MPⁱ although they won't even acknowledge me at that site along with many others sicker than before they began.  So sad.  

Timaca, I read the link you

Submitted by Reenie on Fri, 2008-08-22 00:45.

I've been on another type of CAPiⁱ called the Marshall Protocol, where you restrict D and light along with TINY doses of abxiⁱ along with taking an ARB medication which is theoretically supposed to CURE you.  Well, that's the theory but it didn't work for me and many others I might add, although they don't really want to hear from us over there anymore nor do they want to hear the word relapse although it often happens with many of these treatments and as Jim says, of course the researchers typically WANT to know what's happening so they can figure out why! 

Ellehcim, I was on the MPi

Submitted by Reenie on Fri, 2008-08-22 11:40.

The info can be misleading there because once you say you're not "healing" you are removed from that site and unable to post, like myself. (I am listed there as inactive member now and can't access the threads to post or read in some of the forums)

I really don't mean to be combative. You are listed as an "inactive member" on the MP site. Your posts are still readable. The moderators read all the posts made but only those participating in the study may post their progress. People post honestly about their experiences both positive and negative. Unbridled "flaming" is definitely not aloud to continue, however. It is not a "public board." It is different than the CPNi board. That was all I was trying to say. There is enough room in the world for both, don't you think?

Cherry  (Who in jest asks, - who is "Reenie?")

The Marshall Protocol is "an Adaptive, Open Label, Observational, Phase 2 Study in accordance with the FDA" and is monitored by the FDA closely.

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

Hi Cherry,

Not wanting to butt in generally, but I will here... I found the MPi site before this site and was BEYOND excited about it. Then I did research, one of the most telling links I found was this. It started me on the hunt for more...and it was very discouraging, to put it mildly. Then I learned about CPNhelp and my life has changed for the better.

I have read everything that Reenie has posted and I find that she has been restrained in her comments regarding her previous treatment and the MP site. To introduce yourself this way, by calling a member out for postings which you don't agree with, is combative and shows a personal agenda not related to CPnhelp.org. IMOi.

If you are interested in CPn, you have come to the BEST place. If you're coming in to be adversarial, I think you should keep moving -- this is not that kind of place. Again, JMHO.

Corinna

PS. Not sure why you like the BIG typeface, maybe your eyes are bad? I have used the same so you could read this.

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

Cherry,

Uh, who am I? Let me see if I can find you some links of who I am from a search...

You can find me noted in these links:

From my volunteer work of gathering data:

Early Results from Ongoing Phase Two Trial

I was noted as a speaker:

Autoimmunity Research Foundation Conference: Recovering From Chronic Disease

Sorry this link is broken as I had Amy pull my interview when I began to relapse in October:
Interview with Reenie (CFS, fibromyalgia, psoriasis)

Ok, now your turn Cherry. (btw, you can also look at my profile, pic and read my sig line)

Now as far as my posts being "readable" by others but not by me... don't you think that's biased? I mean, how do I know they haven't been edited by the moderators there? Why am I not allowed to comment to folks about how I'm doing or why I'm not there any longer? It's ok though... folks seem to find me anyway, like you did.

Oh, and thanks for correcting your "FDA approved" comment about the "study site." I would surely like to know what being "monitored by the FDA closely" means.

___________________________________________________________

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

I am tempted to say that it is time to throw a blanket over the fire here, the thread has drifted away from its original subject which is OK since it's Reenie's blog, but for us others who are trying to help people with a limited amount of time available to us, it is a bit of a waste of time.  

We have had several discussions on the Marshall Protocol versus the CAPi, and although it is healthy to debate this it is not always what we want to get involved in; so please if you want to have a debate about the Marshall protocol can you start a blog or forum post headed as such so that others know what they are heading into.

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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 5.5 Wheldon CAP 16th March 2006

Hi Reenie,
I totally agree with you on the supps/supportive-therapies. They are crucial.

I also agree that antibiotics are only part of the picture. But once you have all the supportive stuff in place (Vit D, Sauna, Iodine, Melatonini etc. etc.) it comes down to choosing your antibiotics and dosages to maximize chances of recovery. 

There is a lot of evidence so suggest that higher dosages are better in cpni treatment. My philosophy is to fix the level of die-off and then to choose the appropriate level/combination of abxi to give me that die-off.  You need enough momentum to not grind to a halt in this treatment. But at the same time you don't want runaway inflammationi and inordinate collateral tissue damage. Its really a balancing act. I know some people only have to look at an abxi or a supplement and get die-off, but unfortunately I'm not one of those people. I can't remember if it was Dr Stratton who said "Go as fast as you can, but no faster".

But I do think you are right about the importance of supporting the immunei system, which as you say is what ultimately does the killing. Its easy to forget this.

___________________________________________________________
Hunter: Don't think - experiment

Reenie- I think you are getting the answers you needed from your original post. If you want, I can easily move the MPi comments to their own thread and any discussion can continue there. It's hard to not respond to challenging comments even though they are not with the original intent, and I suspect Cherry got hooked the same way. Still, if there is anyone who has information about that it is you, and the MP site has a history of being suppressive of questions and discussion way before it started claiming it was a "study" site. So PM me if you wish these comments, including mine, to be moved to their own forum thread.

Cherry- You should look back on Reenie's first posts here. She was quite challenging and questioning about the information here, and her questions were welcomed and responded to, albeit at times spiritedly. Your comments are legitimate here, but we have a habit of posting comments that take the original thread off topic too much in their own forum threads. This is a culture thing, as all sites have their own culture and habits, and you aren't the only one to get heated up and get carried in this direction as even I do it from time to time, and I'm the site's founder! 

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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

Jim and Michele, I'm fine with the thread as it stands but I do appreciate your kind and respectful offer to move the off topic posts. I know I'm guilty of continuing with my off topic replies but didn't want those posts to stand without a response as they would be misleading to the folks questioning how and why and what happened to me and others that left "that other site."

Hopefully, there was enough exchange in this thread for folks reading here to be able to sort this out for themselves in an OBJECTIVE way. That's very important as a sick patient. These roads are long and bumpy and once you take the wrong fork it's difficult to turn back after journeying miles in the wrong direction.

Garcia, thanks for not giving up on this thread! I know it's a little cumbersome to get thru the debate on the MP but your comments are very helpful as usual.

One point you made me think of is that even the bateriostatic abxi used in CAPi can be batricidal in larger doses so that may be another way to tweak things if one needs to aid the immunei system temporarily.

I am going to hope that my liver functions and other labs will be normal enough during Valcyte treatment w/o any added pulsing after I start and sticking with all of the adjuncts which mainly help w/detoxing and to aid the immune function.  I will continue to report once I begin the Valcyte. (in a new blog for clarity) 

The minoi and Zithi is prob immunomodulatory enough that it may even help with the Valcyte symptoms of die off but at the same time I think it will be helpful to be going as fast as I can keeping the CAP in place so as not lose the ground I believe I have already covered.

I believe I've taken the correct fork this time.

___________________________________________________________

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

I just got an automated phone call from the mail order pharmacy that the Valcyte is being shipped today, finally!  I have mixed feelings as I never thought this day would actually happen with the red tape I've struggled with to get this to happen! 

So here's the plan:

1.  Do my 2nd pulse of Tindamax for 2 days starting on Monday as planned.

2.  Make appt for baseline labs with Dr's office.

3.  Wait at least a week or more to see if there's any reaction from the tinii pulse and get results of the lab tests.

4.  Begin a new blog on starting Valcyte, continue with follow up labs, CAPi w/o pulses for the next several months while on Valcyte and continue on adjuncts. 

Thank you all for your suggestions!   If anyone has any more thoughts or ideas please post.

___________________________________________________________

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

Looking forward to reading how you do with the Valcyte, Reenie.

Best wishes,
Corinna

___________________________________________________________

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

Hi Reenie,

 Not to bring up a "sore subject" but I am partly responsible for that MPi protocol battle.  I was having a very difficult time making a decision and for the last 2 weeks was lost in research land to the point of getting very depressed.  I had got a response to an email I sent to Amy from MP and she was such a doll.  I made my mind up to do the MP.  I thought it would address everything without hurting my body with the Cpni drugs and the Valcyte.  Your blog made me think about it and I was back in limbo land again.  The idea of staying out of the sun and the glasses and all kept me awake at night it seemed so depressing!!!  I also read a few other posts on this and the HHV6 foundation site on the MP along with yours and they all mentioned anythng negative is taken off the site.

 Yesterday I went to my doc.  He had seen me originally and ran my tests.  It was his nurse practitioner that did my follow up and said "eanie meanie what do you want to treat first, the HHV6 or the Mycoplasma?"  I was scared of Valcyte so I picked the Mycoplasma.  I only started the Mycoplasma for about 2 months.  This visit I got the doctor who said I had a fever every time I came in, swollen lymph nodes and one of the highest HHV6 counts he had ever seen.  He recomended I start the Valcyte.  He doesnt want me using anything but NACi from the Cpn protocol as he sais it would be too much die off for my liver and immunei system.

So, no sunglasses for me and I started Valcyte at 450mg every other day for the first 3 weeks.  My first pill was yesterday.  I also ordered immune stimulants and liver support I found on other websites that clinics who use Valcyte recomend.  Today I feel awful but I doubt it is due to my 1 dose of Valcyte.

 Long story short, thanks for your info.  It helped me make a decision and opened my eyes and some how, as scary as this medicine is, I think it is the right one.  I will keep you posted.

 Thanks for your help!

Michelle

Michelle,

NO worries... glad to hear back from you again! Let me just say I personally have met most of the moderators at the MPi site along with many advocates there. Many are very nice but that won't get us well unfortunately.

I'm curious... why are you taking such a small amount of Valcyte??? I'm planning on using the dosing schedule I've read on the HHV-6 foundation site and that Dr T has reprinted, HERE.

It seems the dosage used to treat chronic viral infection is listed in that link as:

1. Valcyte 900 mg 2x day is given for 3 weeks, then
2. Valcyte 900 mg 1x day is given for 23 weeks.

Can you tell me why your Dr is dosing you with so much less or are you just starting slowly? I'd like to know before I start mine.  I was given enough Valcyte to do the above dosing. Also, do you know what your HHV-6 titers were?  

My elevated viral titers were:

EBVi VCA IgGi - 1:1280 
EBV  EBNA Ab - >=1:640
EBV EARLY Ag IgG - >=1:640
CMV  IgG  IFA  -  14.98 H
HHV6 Ab IgG - 1:320 H

Coxsackie B Ab Panel

Type 1 - 1:8 H
Type 2 -  1:16 H
Type 3 - 1:8 H
Type 5 - 1:8 H

Thanks in advance!

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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

My doctor has actually been using Valcyte for awhile now.  He knew one of the main researchers before the Montoya study.  He really doesnt think it as dangerous as they say and it gets a bad wrap because it is usually used with AIDS and transplant patients that already are on a ton of toxic meds. 

With that said, he told me about the Montoya dosing and some of the others that are higher like you stated.  He knows I work three days a week and cannot give that up.  He sais the die off is very bad and if you look at he HHV6 foundation site you will surely see that people are "flat out" for awhile.  I just couldnt do that.  My doctor said many of his patients cant do it either so he prefers to start them slowly so they dont feel as awful and because it is easier on the body in general.  He plans to work me up to the higher doses as I can handle it.  Infact, he said to back of completely for a week if I get really sick and let the die off get out of my system.

So, that is why I am starting slow.  I cannot afford to quit work and it is all I can do to work the three days a week I am working now.  I cant imagine feeling even worse than I do now either.  A person can only take so much!  As far as staying on the CAPi (I confuse that with Cpni, but you know what  mean) he wont keep me on any of it with the Valcyte until I have been on it for a few months and we know how it affects me.  I agree with him on that one!!  

Keep in touch!

I wanted to add...

From reading the Valcyte Product Information sheet it appears that this drug is used to treat CMV and so I feel it's a good choice given my lab results, for sure. BTW, these viral titers are much worse now than they were when I was first tested 10 yr ago so maybe the relapse and D deprivation had some impact, IMOi.

I also test positive for mycoplasma and CPni now although I only posted the viral titers here and hadn't had those tests done back then.

I also see it metabolizes in the liver but clears thru the kidneys so important to check both pathways.

I can see your point with your working. I'm already too sick to work and barely able to leave home much on many days so I think for me, as long as I don't overload myself and will be carefully monitoring.

Dr Teitelbaum's page also confirms what you say that these drugs aren't too bad in folks with CFIDSi. When I first began methotrexate years ago and then Enbrel later on, I recall reading the drug packaging info and recall a black box warning on one of them. "Death" was not a good option for me for a side effect! Well, I'm still alive and kicking...

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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

Interesting thread to say the least Reenie. Lots of info to contemplate.

Knowing you ... you have all your ducks in a row.... the house well stocked with food and moppers. At least we have done battle before and have an idea what it means. I am cheering for you and saying my prayers. May the Valcyte experience give life back to you.

I am glad to know that you have thoroughly studied the V and will keep your attention on the liver and kidneys. That is a big concern for me. Along with keeping those bowels in order. Too much going, dehydration; too little going, toxic as you well know.

The other thing is the brain fog. If your thinking processes get muddled... be careful. Easy to take meds twice, etc. Keep a chart or whatever works for you. I know that you know this stuff. But awareness is so important I felt I needed to say it. Been hit with a new bloom of brain fog myself so maybe I am speaking to myself here. LOL

Will be looking for your posts to see how you are doing. Hoping it will be easier & with better end results than you imagined. I want you back on your Harley riding the highways of AZ celebrating how good life can be again.

OK. I can't think no more. Time out.

Truth wins in the end. MM

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FM dx 2002 (sinusitis-rhinitis, dry eyes, bronchitis, cardiac, shoulder, liver, gallbladder issues) Started NACi: 4/19 (2400 mg daily 7/21) Start list supplementsi + Iodoral 12.5 mg. daily: 6/19  FIRi sauna, 100 mg Minoi 9/4.

Hi Reenie, in comment to the beginning or additional comment requests made by you during this very interesting blog post, regarding tinii pulses and reaction time afterwards.

Here it is my second tiniazole pulse was a full pulse ( first was the one tablet concervative approach.) on day 12 of the the cycle I developed fever 102.0 F. Oral reading. Held about 12 hours as I recall then began to fall steadily to 98 within another 24 hours.  The though at the time was it was a response to cystic Bb.  And people can have Bb and be unknowing, even testing is not certain way to find out.   So my point is that once I am past day 15 I am sure there is no lingering after effects or challenges, IMHOi of course!

Louise

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Louise  CFSi, CPN+/Bb+,Wheldon CAPi 6/07, Cholestyramine 1-2 pks @ HS for Porphyriai & Endotoxinsi PRN, Doxyi 200daily, Roxi 300BID, Tini500BIDx14day pulses,VitD3-10,000IU, Iodoral 12.5mg, {S.O.D.3/QD[KAL Brand], Pyruvate 3.75G, SAM-e For Energy Support