Hi all,
I was wondering if I could get some feedback/comments/suggestions before I make a choice. The Valcyte has been put on hold due to pharmacy needing more info before filling the order so that's not in the mix, yet. I'll be adding Valcyte, later, if/when I can get my script filled.
But I was wondering on whether I ought to try improving how I feel first (w/calcium pyruvate) or start the tinii pulse first. 
I feel I'm stable on Z+M or as stable as I'm going to be. I have good days and bad days but all still tolerable. I think I'm experiencing some die off and the waxing and waning of symptoms is indicative of how my body is dealing with the die off, IMOi. This seems to be stable now after a month on full doses of M+Z and all of the CAPi supplementsi so I do believe it's time to begin pulsing tini soon but wanted to know if maybe adding pyruvate first might make life a little easier and the pulsing more bearable.
I would actually prefer to try to feel better rather than worse so that's why I'm thinking maybe to add pyruvate before pulsing now rather than pulsing first.
I do believe I have to begin pulsing eventually because I doubt much else will improve without it and may stay locked in this cycle of up and down w/o pulsing, but I'm wondering from reading others' comments on this board about maybe getting less toxins in my body from the actions of the pyruvate may be a better plan and then adding the tini pulse to that.
I read where Lori's Dr suggested 2-3 grams on MWF I think, an hr before the abxi, while others are using more. Would this be enough to experiment with?
So, my question is...
Do I add tini pulses now and see how much further my cycles change of the good/bad or do I add pyruvate to the mix to try to use this for improvement first?
What do you all think? TIA
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NACi 2.4g, Zithii 250mg/MWF, minoi 200mg, Tinii 1g/day pulses, Iodoral 25mg, Supps, CFIDSii/FMSii, Hashimoto's, Psoriasis, PA, IBSii, Secondary Addisons
Don't believe everything you think!
Reenie, as someone who has
An Itinerary in Light and Shadow
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i found this in
i found this in handbook:
From Dr. Charles Strattonii, 4/24/08
My thoughts on the current Stratton Protocol is that this is a work in
progress, but given what we know now, it would be the following:
NACi 600 mg one a day to test "Chlamydial Load."
If no reaction, go to 1,200 mg twice a day.
If a severe reaction ("Flu-Like" reaction), use low dose prednisone (5 mg per day) for the first few weeks of therapy.
The next step would be two weeks of a macrolide (clarithromycin preferred because of higher levels obtained, roxithromycin, or azithromycin) with 6 grams of pyruvate given 1 hour prior to the antibiotic dose. In addition, 400 mg of Ibuprofen should be taken twice a day along with 1,200 mg of NAC twice a day. For those with severe reaction, low dose prednisone 5 mg per day. For those who get a severe reaction with the pyruvate/macrolide, 3-4 days of low dose prednisone could be tried. Also, using additional pyruvate (3-6 grams) for reaction should be tried.
For those that have a major side effect on the pyruvate/macrolide alone, I'd continue to treat with the macrolide alone until the side effects are manageable. For those that don't, I'd add doxycycline 100 mg twice a day with 6 grams of pyruvate 1 hour before. Continue the NAC and Ibuprofen.
After two weeks of doxycycline if all went well, I'd add metronidazoleii 500mg twice a day with 6 grams of pyruvate before that. If a reaction is seen.
To the metronidazole, I'd then pulse it until the reactions were manageable.
If minimal reactions, I'd continue therapy for at least 1 year and then recheck titers. If titers were low, I'd add rifampin or rifabutin (preferably), using the rifamycin with pyruvate taken 1 hour before the rifamycin. If no reactions to this, I'd consider the therapy to be complete.
I would continue to monitor titers every several years. If the titers increased, I'd retreat with 6 months of clarithromycin or roxithromycin plus rifabutin plus pyruvate and ibuprofen. I'd continue the NAC for life.
For people on the existing CAPi who are being switched:
For those on the current Doxycycline, Azithromycin, Metronidazole, and NAC protocol, my thoughts are that they should first switch from Azithromycin 250 MWF to Clarithromycin 500 mg twice a day (or Roxithromycin) and then add pyruvate
Dr. Stratton adds that Levaquin may be used instead of Clarithromycin for a short period (one month) as it has excellent activity for a short period of time. Clarithromycin = higher levels. Levoquin Both when combined with pyruvate theoretically will provide better killing.___________________________________________________________
Mphs, TN. CFSi, hypoT (Hashi), adrenal fatigue, 37 w/hormones of 80, right arm neuropathy. + cpni, myco, EBVi, CMV. Capi began in 6/07. NACi 2400mg, doxyi 100-bid, biaxin 500mg bid since 7/08, progesterone, synthroid, flagyli pulses
I'd like to reinforce the
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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
Just so you should have
Just so you should have opinions echoing every option (ask a question around here and you'll get every answer):
I'd say you have a good chance of alleviating symptoms by starting with 4-6grams pyruvate an hour or so after your antibioticsi. In other words, try it for the side effects first rather than prior to the antibiotics, and see if it helps. I'd say do 6 grams so that you have enough to know if it helps or not. Since your aim is to find what alleviates symptoms of die-off and porphyriai doing it this way risks little. It will either help or not. If it helps then you have resourse for the Tinii pulse. If not, you can either try it before and after your antibiotics, or just do the pulse. My experience is that the lower doses don't do much that's clear, so that better to do 6 grams and know you have enough in your system to make a difference.
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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
Thank you all for your
Thank you all for your comments. Yes, when you ask a question here you either get an overwhelming one sided response or you get every possible option to think about. Either way, I think it's helpful to sort out what to do in one's own mind.
I'm simply not sure what I'll try yet, but will post when I do.
For now I'm going to give myself a little more time of trying to feel some improvement before taking tinii although today was my marked day to add it. I want/need to feel better first so I'll wait a few more days to see how I feel before adding anything else to the mix. I may try Jim's idea of taking the pyruvate after abxi dosing to see if it helps with symptoms. That would be the best strategy right now, if nothing else changes how I feel in a few days' time.
My personal thoughts are there's always so much going on with me (as most of you also have) so I'm not sure if it's the added stressors of my life causing symptom increase, adjustment of thyroid, the weather, (thunderstorms right now off and on) die off (I'm experiencing some for sure) or a combination of these.
I've always thought, "when in doubt, don't" is a good practice to follow.
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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'm adding to this blog
I'm adding to this blog because I have more questions now. I'm basically feeling very puny these days and have put the pulsing on hold until I can sort this out. I thought I was getting ready to start with my first one day pulse of tinii but now I'm confused with how I'm feeling.
My symptoms are extreme fatigue, achiness mainly in joints and feet, fluishness, some emotional distubances, sore throat, IBSi type symptoms. These symptoms are all very transient. The fatigue and achiness is the worst of them lasting the longest and affecting me the most as usual since it interferes with everything.
Here are some of my thoughts as to what might be happening. Now I feel I'm in limbo and not sure if I need to just ride this puppy out before adding a pulse or would you all think I ought to try to do something to boost my energy again, back out of bed more before beginning to pulse the tini. I won't pulse in this state as I believe it would only make things worse, unless anyone thinks I ought to but I don't see that advice being given anywhere on this site.
1. I may be getting more die off now from the M+Z which may have taken a few weeks to really affect me. Since these two meds are bacteriostatic and I've only been on the full doses of each now for a month, this very well could be causing the added symptoms.
2. My endo lowered my Synthroid dose about a month ago as well, based on my labs. I felt the Iodoral was improving thyroid function and so it made sense but this could be adding to the fatigue. I just went today for a retest and will see what the lab tests say.
3. I've had alot of family stress. (mom broke her hip, daughter was in ICU and is now staying with me and I'm helping to provide for her and give her rides and help her get treatment and care) This is always a tough one as I feel overwhelmed these days but it's hard to say which came first, the overwhelmed feeling or the feeling puny. I don't feel well emotionally when I feel puny and vice versa. I know this is part of the illness but it's also a part of the treatment... ?
It's also making me doubt the treatment. I mean, would I just "do better" if I did nothing vs the CAPi? I think this is part of the mental disturbance I get when I'm not feeling well. (seeing the glass half empty these days vs half full)
4. I had been working this past month on a vacant house with new paint and lots of cleaning chemicals combined with the heat of the weather here now. I appeared to be toxic while working on the house so am wondering if this could have triggered the symptoms as well.
There's always so much going on making it hard to assess, isn't there. I feel like this is a never ending cycle of this illness and am feeling disappointed as I was doing so much better before this all began to send me feeling so puny lately, again.
Any thoughts are welcomed. I feel like I'm stuck in limbo right now, not feeling extremely bedridden but definitely worse than I did a few weeks ago.
TIA
PS I forgot to mention my daughter was tested for TB today and she's showing some redness and raising this evening! I'm now beginning to wonder if there is a possibility of TB exposure for both of us adding to the mix. I'll see how her test looks tomorrow and also call my Dr's office to see about a test. Geez... so much going on.
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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!fYou know it. Too much
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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.
Reenie, There is often an
Reenie, There is often an extremely challenging period, that seems to me from observaton of the postings on this site over the past year for folks with CFSi type presentations. Somewhere around the 8 week to 12 mark in treatment the infected cells which have been held in suspended limbo by the superpowers of the CPni begin to be allowed as a consequence of the abxi antireplicant effect, to die off releasing increasing amounts of porphorins and endotoxinsi. This is a simplistic explaination but it is part of the reason that some folks get scared and tired and emotionally distressed and discouraged and some give up not seeing the event as temporary overwhelm from the biochemistry of it all. For some folks the charcoal, VitC, taken librally does the job. For me cholestyramine is more effective some others have found it helpful too.
Sorry to hear about your mom and daughter that does not help yet my opinion is that you would have been in this space anyway without all the added overwhem and environmental challenges. I was there and had none of those other challenges. The first half a year for me was more down than up then I turned the corner now I am up and sometimes a little challenged with pulses. For me post pulse clearing can take up to 2 weeks. You have time to start the Flagyli/tinii later. We all want to get on with it and then some of us find out what it is personally is like for us. I did not have the early reprieve from exhaustion that you did, I was instantly down and out on the couch or in the bed or sitting at the computer was all that I could do.
Apply the moppers, and the energy enhancing neutraceuticals, d-ribose, S.O.D., pyruvate between not before abxi, B12 sublingual and the supplement list to support the cells to heal and replace themselves.
This is a powerful protocol, it is worth working it through, and it is work at times to keep at it. That is why this community has helped many maintain the treatment and come out weller and stronger, there is no easy way out IMHOi. Alternatives are few from my point of view. These bugs are brilliant and it takes continued persistently applied CAPi to evict them.
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 25mg, {S.O.D.3/QD[KAL Brand], Pyruvate 3.75G, SAM-e For Energy Support
Louise, This is exactly the
Louise,
This is exactly the kind of input and encouragement I needed to read. Thank you!
I was feeling much like MM posted that I was suffering from too much stress which would mean that the CAPi is really doing nothing and I was just having another flare of my illness; not what I was hoping for.
I can get more aggressive with the moppers (which I'm already using) just knowing I'm getting something out of the CAP. The toughest part was the good feeling I got at the very start for myself but I think it had more to do with how sick my immunei system had become from D deprivation along with lack of other supplementation I had done for nearly 4 yrs before finding this site.
I'm with you (as most of us would agree) that there is little else we can do for this illness and I was never one to take things lying down! (pun intended)
I have a suffering gf that is in bed mostly and way too sick to even think of starting CAP at the moment which I try to help on the phone mainly. She feels she suffers from depression and takes anti-depressants for it, but me thinks it's more of her illness causing symptoms and secondary porphyriai. I wish I could convince her to try using due diligence and apply the moppers but she feels so poorly she has a hard time thinking something "so simple" would be of much benefit.
I'm no Dr but the Drs have studied the toxins and how to treat them and it does really seem to be a big help. I think understanding that the supplementsi don't cure you but they can make life more bearable along the way is the key.
I felt better with the C-flush although it doesn't last very long and the last time I did it I think I overdid it. I upset my bowels for the rest of the day and it wasn't worth doing because of that so if I do it again I won't go quite so far with it. I might try using some of the other cleansers such as IR Sauna, (which I slacked on lately) more epsom salt baths and maybe even a coffee enema in addition to the moppers you've recommended.
I can usually tell how much issue I'm having with toxicity due to my bowels. (fat soluble porphyrins) They let me know and it's intermittently happening so I think bumping up some of the moppers might be in order and a good reminder to do.
I'll bump up my twice monthly B-12 injections to once/week too. Also, I used to take a whey and green foods shake drink a few times a week which contains chlorella even before I knew what it was good for so I think I'll discipline myself to do this again even though it's awful tasting.
I think it's prob time to add pyruvate (my original question) but not in the way I was thinking originally but AFTER for energy boosting to see if it helps. I cringe when I intake more refined carbs like glucose and d-ribose knowing I have hypoglycemia, but again, this has been studied by the experts and it does work. As long as I'm careful not to overdo a sugar dump, I'm fine and it also helps prevent increase in secondary porphyria rather than having to mop more of the after effects of it up.
Yes, it's alot of work to do all of this and as long as I feel it's making some difference in my life, I don't mind the effort.
BTW, someone reading had sent me this link and I think it makes good sense not to expect too much from just one segment of treatment as Dr Powell suggests in this link,
Comments on CAP variations from Dr. Michael Powell
I'm not really expecting a cure but a way to manage my illness better. If I get more than that GREAT but I think my expectations are more realistic, for me anyway than thinking after being so sick I'll miraculously be cured.
This site really does come in handy for encouragement and education.
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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- can't respond to
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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, Yes, I agree and the
Jim,
Yes, I agree and the delay of time from the cleaning and painting would also indicate some detoxing/clearing of chemicals from my body IMOi.
However, I've increased glucose intake today and added pyruvate (after abxi, not before) and I feel somewhat better already. I'll keep you posted on as I move along. I really want to feel well enough to begin a one day tinii pulse soon.
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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!Hi Jim- now is it 6gm of
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NACi and glutathione push for years all supplementsi in protocol)IV vitaminsi b1-12,F10/29/07 roxy300,doxy200,rifampin300aziyh mwfMS flagyli 1day 500x2 11/23/20074th pulse 2.8.081500mg 8days 7/08 finished 10th pulse on 300 rifamp bid, doxybid 7/2008
Barbara, The calcium
Barbara,
The calcium pyruvate before abxi helps to potentiate their effects by its ability to stir up or provide increase in cellular energy which will also increase energy available to the bacteria so you may feel worse from CAPi (as I understand this) but the pyruvate taken after and away from the abxi will help promote cellular energy and you will feel better. This is the theory anyway. You can read the links below where one Dr comments that pyruvate still needs to be studied and that's what is happening by Dr Stratton et al.
Calcium Pyruvate by Nutricology
Calcium pyruvate is involved in ATP production, increased protein uptake, increased glucogen storage, and cellular respiration, potentially Enhanceing the body utilize fat for energy, spare lean body mass and increase endurance during exercise.
and
Ray Sahelian, M.D. Information on Calcium Pyruvate supplementPyruvate is a three-carbon ketoacid produced in the end stages of glycolysis (breakdown of sugar). It can be reduced to lactate in the cytoplasm of a cell or changed to acetyl CoA in the mitochondrioni. Simply, pyruvate is a product of sugar metabolism.
There have been claims that calcium pyruvate supplementsi help with weight loss or enhance physical endurance, however there is not enough research to confirm these claims. A rodent study indicates that pyruvate supplementation may help with the stress response. Much more research is needed with pyruvate before we know in which situations or medical condition this supplement could be useful. Pyruvate is normally sold as a supplement in the form of calcium pyruvate.
I was being advised by JimK to only try the pyruvate AFTER and away from abx as to FEEL BETTER which it does seem to be helping with, so far. This way I'll feel well enough along with the rest of the arsenal of supplementsi used to treat secondary porphyriai and endoxins due to the pulsing part of the CAP which I'm gearing up to add to my treatment soon and can use pyruvate to help alleviate pulse induced symptoms in addition to the other toxin moppers.
I'm taking 3 gms 2x/day of calcium pyruvate for starters.
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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!