I did a 2 day Tindamax pulse Mon/Tues this week. This is the last pulse I plan to do for awhile as I'm going to begin taking Valcyte and will create a new blog for that. I think I may try using the pyruvate protocol once I get stable on the Valcyte and maybe after the initial herx/die off from it rather than the tinii pulses during the next few months.
I have been feeling rather horrid lately, for me, which means I'm pretty much housebound and have moved bed hugging up the list for one my top "favorite" daytime activities lately. I can do one activity every few days out but then have to return home quickly for a nap. This started before the tini pulse but I think it's increased some now.
I've been negligent on using the IR Sauna and am heating it up to use as I write this. I find it helps me along with charcoal and the whey/greens drink mix when I remember to use it. It's hard work to fit all of these measures in but I feel better when I do them and try to remind myself that I don't have to do it forever, just for as long as it takes. I'm sure some of these measures (supplementsi, etc) will be required for maintenance but not nearly as much as they are required now during CAPi treatment. 
I've had so much added family stress for the past several months that I feel it's affecting my health. I'm working on reducing them as much as possible although it's difficult at times.
I've been adding a little more Vit D to see if it will help with psoriasis which is concentrated now mainly on my scalp, small amount on elbows and mostly on my knees and legs below the knees now. A gravity thing maybe? I'm trying to use Dovonex more too, which is a topical rx Vit D cream.
I've been spending less time outdoors since I'm bed hugging alot more lately so I think it's a good time to increase the D rather than waiting for the end of summer. I was retested yesterday along with the baseline CBC and CMP tests for the start of the Valcyte treatment which I plan on starting on Monday. 
NEW ENTRY - Sept 1, 2008
I posted HERE with more questions regarding starting the Valcyte or not. I held off on starting Valcyte today because I'm afraid I might make myself sicker than tolerable. Also I'm questioning whether I need to go after these viruses or will getting rid of the bacterial infection alone help beat down the viruses.
My viral titers are much higher now than the mycoplasma or CPni was at the start of CAP. What to do, what to do...
I don't want to stop CAP as I know I'm getting plenty of reaction from it.
I think today, I'm finally feeling a little bit better from this latest pulse I did last Mon & Tues. I'm using the sauna more frequently, more Emegen-C, charcoal; stopped pyruvate and quercetin which I think is all helping too.
Thanks all and Happy Labor Day.
NEW ENTRY - Sept 3, 2008
I thought I was beginning to feel better but I'm not. I'm going back to bed. 
I just wanted to say that feeling this puny after a 2 day tini pulse only seems to confirm that:
1. Vitamin Di is NOT preventing me from reacting to CAP (not immuno-suppressive)
2. I may have more cryptic formi than EBs and this is the first I'm actually getting to them
3. This has GOT to get better/easier again for me eventually??? hopefully...
I have to say I really underestimated the power of CAP. I think I felt with what I had previously completed, (nearly 4 yrs on another protocol) I didn't think I would get much reaction on CAP but I am clearly mistaken.
The good news is I feel puny; the bad news is I feel puny. 
NEW ENTRY - Sept 7, 2008
It's 12 days past my 2nd tini pulse. I had NO idea this would have been so rough but I think most of it's over now. As I read thru the forums and blogs and reread, I'm slowly absorbing all of what's happening to me now, I think.
I don't want to discourage anyone that this is so difficult because I think alot of it is that I hadn't anticipated much reaction at all to any of this treatment after being on the MP for nearly 4 yrs. I think that's the hardest for me to swallow... more than taking all of these pills or remedies or even feeling poorly.
There's definitely depression that comes with the die off and porphyriai and I think for me, I may have more cryptic forms than other phases due to the antibiotics I've used and by the reaction I've had from this short pulse of tini.
I'm going to experiment more with pyruvate as I think regardless of the time of day I took it in regards to the abxi, I think I may have had more die off of RBs. I'll try this again as I get more familiar with how I react and as I get further along.
From reading thru Jim K's blogs tonight I've learned alot. Thanks Jim, for keeping such detailed info.
So if I have this right, the continued feelings I've been getting from the tini pulse are prob due to the ongoing killing that my immunei cells may have been doing or it may mean I've had alot of very infected cells that were dying off and causing porphyria even after the pulse. Anyway, this is alot more complicated than I thought but alot easier to get now that I'm experiencing it.
I'm soooo glad I delayed the Valcyte. I plan to take it because of my high viral titers but at a later date, not sure when, yet.
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NACi 2.4g, Zithii 250mg/MWF, minoi 200mg, Tinii 5day/1g/5 pulses, Valcyte
Iodoral 12.5mg, Supps, CFIDSii/FMSii, Hashimoto's, Psoriasis, PA, IBSii, Sec Addisons
Hey Reenie ... as usual
Hey Reenie ... as usual you seem thorough and have things well thought out it seems to me. But I am not experienced in all this as you know. However, I wholeheartedly agree that you should cut down on situations that cause you stress thus overloading your already struggling immunei system. In my experience ... if you don't do it yourself in time your body won't give you a choice. SLAM BAM Thank You M'AM will take charge.
LOL Great example of that I am.
I am sorry you are feeling horrid. It is not something you say often. So I know you really aren't feeling well. That concerns me. I hope the big V will turn that around for you. You won't know until you do it though. I trust you have done/will do everything possible to be ready for it.
It seems although.... the meds sound scary .... it takes something strong to kill what ails us. I just wish you had someone there to monitor you gf. You must stay in touch so we all know you are OK.
You already know that detoxing will be key to success. But can you stay on top of it so you don't submerge into brainfog & lose track? I remember keeping charts and back up notes to check off to make sure I did not dose twice or forget dose back on the MP. My fav word was "Stupified" at that time. I am going to start making notes again cause my brain fog is increasing ... my head gets so numbish from the Bactrim. Hard to focus. I stood in front of the microwave for a good 30 seconds trying to figure out what usually takes less than 5 seconds. <shaking my head>
Affectionately my new nickname must be "numbskull" Reminds me of my teen days when my neighbor affectionately called me "knucklehead". He told us that teenagers didn't get their brains back until they got out of high school. LOL Some don't even then if you ask me.
How many days until the Tindamax decays? Minoi is 2 days if I recall and Azith is 2-3 week? Did you choose Mon. for the big V cause Tinii has less than a 5 day decay? Take care and keep good thoughts. MM
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FM dx 2002. Started 2008: NACi 4/19 (2400 mg daily 7/21) Start list supplementsi + Iodoral 12.5 mg. daily: 6/19 FIRi sauna, 9/4 100 mg Minoi, 11/3 Azith - 12/1 MWF - 1/5 100 mg Mino
Reenie- Hang in there.
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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
MM, I just "picked" Monday
MM,
I just "picked" Monday because I'm waiting for the results from my baseline labs and I had to schedule lab appts 2x/weekly for the next 3 weeks during the first part of the Valcyte treatment. Then labs go to 1x/weekly and so forth, over time during the treatment.
Also, even if there's some overlap, if the tinii is still clearing from my body, everything I've read about reactions to Valcyte take most folks into the second week or later of treatment before they really feel anything.
Jim,
Thanks. I think the sauna did help me some today even though I had to cut the time short to 20 mins when I usually try to do 30. I'm going to TRY to be more diligent with this simple part of the detoxing. I REALLY does make a difference if I do it more often and it's simple enough to do. Maybe if I sat in there with a laptop or on the phone. (just kidding, well, sorta)
I totally agree that the more toxic one becomes, the less motivated and it becomes a vicious downward spiral.
I do keep a log as well as reporting on my blog so maybe if I figure out a schedule even if I don't stick exactly to it, that might help for Sauna days, C Flush days, etc. All of these items DO help, but you have to DO them for them to help!!!
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NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 5day/1g/5 pulses, Valcyte
Don't believe everything you think!Iodoral 12.5mg, Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons
Hi, sorry you arent feeling
Hi, sorry you arent feeling so great, but remember things always change and eventually things will get better , with time. Stress is so bad for the body
I just noticed your signature line btw, it says " dont believe everything you think. .. so true, I like it.
I hope you feel better soon.
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CPNi pcri and antibody positive , treating MSi,
CFSi, TMJ, trigeminal neuralgia,IBSineutropenia, pus found in facial bone,Doxyi 100x2,Doxy 200x2 zithro 250x1 alternate days. Metroi pulses each month.I just had an interesting
I just had an interesting epiphany which I posted after reading in THIS thread about pyruvate and Sunni's experiences.
Suppose pyruvate isn't as controllable in that taking it anytime throughout the day would make one's abxi more effective in killing off more of the RBs.
It sounds like Sunni might be getting more reaction from her antibiotics even though she took 3 grams of pyruvate spread out throughout the day.
So, if that's the case, it might be that the reason I'm feeling puny lately is that I've been taking 4 grams of pyruvate (after abxi) which I thought was supposed to help with symptoms. I'm going to stop the pyruvate for a couple of days to see if that makes any difference.
I got a call from Dr's office for baseline lab results and all was good so I've got a green light on starting Valcyte. (mixed emotions on this) I also got my 25D test back and as I suspected, my level dropped some since May when I was sunbathing (49 down to 34) so I've already increased my supplementation and will stick with it.
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NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 5day/1g/5 pulses, Valcyte
Don't believe everything you think!Iodoral 12.5mg, Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons
Adding here... I'm
Adding here...
I'm reconsidering beginning the Valcyte because of the way I'm feeling.
I'm nearly housebound, barely able to do much and definitely not leaving home much more than absolutely necessary for the past couple of weeks or more. If I got any worse than this I don't think I could bare it. I'm very lethargic mainly, just very blah. I think this would indicate that the CAPi is working as it ought to and adding anything more may cause me too much porphyriai and overload.
I think I may be getting enough reaction (die off, secondary porphyriai) in symptoms and think maybe I ought to forget about adding anything else to the mix at the moment like Valcyte. I would still like to add it, maybe in a few more months? Maybe if/when I don't get much reaction to the CAP and pulses?
What do you all think? All thoughts and suggestions are welcomed. I'm going back to bed now but will check for any comments periodically. TIA
PS Baseline labs (CBC, CMP) were normal and 25D is 34 down from 49 in May. (I've increased Vit D due to less sun exposure now)
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NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 5day/1g/5 pulses, Valcyte
Don't believe everything you think!Iodoral 12.5mg, Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons
Reenie, considering the
Reenie, considering the fact you are so incapacitated now, and you have just started pulsing, and that you started this protocol after being on the MPi and have been "rebuilding" your body (in addition to trying to kill the CPNi) I would personally NOT add the Valcyte just yet. Why risk making yourself so much sicker (at least now). I know it it's easy to think "well I am already homebound and in bed.. yada yada" but with this process it's "expect the unexpected".
I have postponed treating my EBVi and HHV-6 because of the reactions I've gone through with the CAP. If I were you, I would wait....... just MHO!
I hope you start feeling a bit better :)
JeanneRoz
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JeanneRoz~CPNi diagnosed & started protocol 4/2007, also HHV6, EBVi. CFIDSi/FM diagnosed: 6/07; 100mg/doxyi/BID ~ 250 mg AZITH M/W/F ~
1st Tinii pulse 4/17/08- 1 250 mg. tab for 2 days. Pulse 5: 9/28/08, 250 mg TINI BID, 3 days. SupReenie, no words of wisdom,
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SPMSi< Supplementsi & NACi, Doxyi 200 mg, Azith 250 mg 3X/wk, most suppliments, currently Flagyli 1500 mg x 4 days once per month
Reenie, take this time to
Reenie, take this time to rest and renew your body for the next boxing round. I can relate to being bed bound and very sick from starting Valtrex about two weeks ago. Today,I forced myself to improve my mood by sitting outdoors with my cat and dog by myside. They are the best companions when you feel so bad. I'm not even pulsing at this point and still have daily pit falls. The Valtrex is very important to lower the viral side but please give yourself more time to recover. It will be worth it. Take care... Bonnie
Don't forget Speedy
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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.Vit.B12 injections daily, cholest. prn. Start Tinii. in Jan. if all goes well.
Bonnie, It sounds to me
Bonnie,
It sounds to me like you're vote would be for me to start the Valcyte once I feel a little better? I just wish I really knew if I need to do it or am I setting myself up to feel worse than I do unnecessarily?
I spent a long time reading online last night trying to sort this thing out but I can't find any good answer still. It looks like David Wheldoni's view on his site is that the CPni will eventually knock down the viral load. I will I had some sound medical advice right now but my Dr wouldn't have an answer for me. He's only rx'ing me the meds because I did the research here online.
I can't do a darned thing really and have spent the last week in the house. There's so much to do and I can't get it done. I'm finding it very stressful to feel this way.
Yesterday I barely got out to make an atm bank deposit which I had to do and it exhausted me and I got frightened realizing my cognitive function wasn't very good driving home. I'm not able to spend much time talking on the phone either as I begin to feel anxious.
I know this all sounds like porphyriai and I'm doing all I can to help treat it.
Tody,
Yes, I do feel horrid and get bored with TV and I thank God for my two fur kids.I think the worst part is that I feel so cheated by the last protocol I did... after 4 yrs being in such a sick state AGAIN. I think this is causing me to feel more depressed than I would normally feel from just feeling sick.
Jeanner,
Thanks for your reply. I just came across it as I was writing this reply. I couldn't stand feeling any worse but you're absolutely right. My daughter's logic (well meaning of course) was something like, 'well, you're already feeling so crappy, why not just tough it out' but I know it would be too difficult for me at the moment.
I really needed to read that!
Here's Speedy... I'll post him moving forward, because I am moving forward, I guess...
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NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 5day/1g/5 pulses, Valcyte
Don't believe everything you think!Iodoral 12.5mg, Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons
Reenie~ I'll respond
Reenie~ I'll respond here...although I first read your questions about antivirals and CAPi in another thread.
Just do one thing at a time. Adding too many drugs at once would be too hard on your body.
Depending too on what your HHV-6 levels are...would indicate if you need valcyte or if valtrex would do (or acyclovir). Either way, when I started valcyte and when I started acyclovir (and when I started doxyi for that matter) I got quite ill.
I waited a couple of months after starting the doxy before I started the acyclovir.
You are correct in that you may need both antiviral and antibioticsi. Only you and your doctor can assess that by looking at your lab values.
I wish you the best as you travel through these murky waters.
Timaca
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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, Thanks for the
Timaca,
Thanks for the reply. My labs indicate a much higher viral load than bacterial infection if we use the tests for past infection titers as the experts say, for indication of chronic or reactivated past infectionsi. (IgGi antibodies)
But, as I mentioned in THIS THREAD, it may be enough to know I'm responding to the CAPi and that once my titers actually become more elevated for CPni due to a better functioning immunei system, as has happened to mycoplasma titers, then my better working immune system HOPEFULLY will beat down the viruses as well.
I guess we won't know for awhile yet, will we? Patience is not one of my strong points.
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NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 5day/1g/5 pulses, Valcyte
Don't believe everything you think!Iodoral 12.5mg, Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons
Reenie, Sorry to hear of
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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, Thanks for the
Louise,
Thanks for the encouragement, however, I feel I've already BEEN HERE on a different protocol. I was where many folks are after 3 yrs on THIS protocol at about 70-80% maybe better last year. I have to remind myself I didn't quit the other protocol... it quit me.
So how do I really know this is the RIGHT thing to do this time? Will this protocol work? I hope so and I have my fingers crossed but it's confusing here too, seeing what folks are doing and responding to here. Some keep pummeling themselves with more and new abxi. Is that what I'm in for over the next several years??? OTOH, Sarah pulsed abxi after the first year and still continued to improve. I LIKE that idea.
I talk with lots of folks that relapsed like me on the other protocol and many are just too sick now to try anything else while some are now trying the CAPi. It's so very sad and disappointing and that's the good news!
Well, folks, thanks for letting me vent. As many of you know, I have a large bottle of Valcyte in my cabinet because I simply don't know what the best approach is anymore. I'm sick and tired of well, you know...
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NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 5day/1g/5 pulses, Valcyte
Don't believe everything you think!Iodoral 12.5mg, Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons
Reenie- one thing that's an
Reenie- one thing that's an absolute for me: don't make decisions while "under the influence" of a pulse. If you talk to the old-timers here, there are some "stories" of times I tried to do things requiring higher capacities while in a pulse. This also applies to after-pulse porphyriai. One time a couple of years ago, I was obsessed with solving a problem here and CRASHED THE WHOLE WEBSITE! It took professional help to get it working again. I probably could have used professional help too. It became a joke because I would perseverate on trying to figure things out when the reality was my judgement was trashed. That's the porphyria in action.
So, give it a rest. Stop web searching. Stop trying to decide. Stop, stop. Take it from me, if you were worried enough about your cognitive fogging to worry about driving home, then why do you think you have the cognitive capacity to make a good decision. Obsessive perseveration isn't the same as problem solving, it only feels like it.
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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, I only have one
Jim,
I only have one comment that comes to mind... "When in doubt, don't"
I think I was ranting more for future benefit, so I can go back and reread this and realize what exactly was happening. (If that's somehow possible)
Of course nothing makes much sense right now and I thank you for pointing that out.
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NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 5day/1g/5 pulses, Valcyte
Don't believe everything you think!Iodoral 12.5mg, Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons
Reenie, Sorry about tough
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On Wheldon protocol for MSi since April, 2006. doxyi 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli Pulses start end Sept., LDNi 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30. Ma
Wiggy, Thanks, I'm doing
Wiggy,
Thanks, I'm doing much better today. I'm going to finish reading Jim K's blog entries (almost done now) and will create a new one of my own with some observations and updates for future reference.
I see how important it is to keep a blog going so we can all figure out how to get the most out of CAPi.
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NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 5day/1g/5 pulses, Valcyte
Don't believe everything you think!Iodoral 12.5mg, Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons
YAY Reenie! I am so glad
YAY Reenie! I am so glad & relieved to know you are feeling a bit better. That was a tough one, huh?
I am curious to know ... now that you know more ... the first hand effects of Tinii pulses. Do you think a person should do them as soon as possible? I am trying to understand how to gauge it in my future treatment. Your view on it would be most helpful. MM
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FM dx 2002. Started 2008: NACi 4/19 (2400 mg daily 7/21) Start list supplementsi + Iodoral 12.5 mg. daily: 6/19 FIRi sauna, 9/4 100 mg Minoi, 11/3 Azith - 12/1 MWF - 1/5 100 mg Mino
Hi MM, I think we have to
Hi MM,
I think we have to look at this on an individual basis. But I think the CAPi is alot harder in some ways than the MPi ever was. I think it might be because the effects might be more realistic. I mean this seems to be real science and seems to be reproduced over and over in the same ways and many Drs and researchers come up with the same logical explanations.
Someone here suggested I read thru all of Jim K's blogs from the very start since he posted his experiences quite regularly and also because he has CFIDSi/FMSi. I'm so very glad I spent the time last night reading thru. I learned much. Thank you Jim and thank you to the person that suggested I read it.
I'm going to go back over some key points made in there and will prob resurface some of those blogs with my questions on Vit D and apoptosisi for example.
MM, I posted in your blog and I think until you experience the effects of pulsing, you won't understand it. I know I didn't!!! But I also now understand a little more of the necessity of it from Jim's blogs and why it's absolutely necessary to do. I'm actually looking forward to my next pulse... NOT!
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NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 5day/1g/5 pulses, Valcyte
Don't believe everything you think!Iodoral 12.5mg, Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons