Trying to get through another reaction, I think.

Submitted by 4dogday on Tue, 2008-11-04 02:01

I'm blogging to try to calm myself because I'm feeling so bad it is making me nervous.  I still have not taken flagyl, and have not started pyruvate again (after about a week of it, I felt like I do now, and threw up.)  The only thing I can think of is that I started some Vit D, and perhaps that is ramping up my reactions.  I also took some Valtrex after my immune system went down after taking pyruvate, and now I wonder if Valtrex might cause any ramping up of reactions.  It seems to me though that, regardless of how, I'm killing (or at least aggravating) some bugs, or at least ramping up my immune system more and more, even without flagyl.

I'm thinking I may be the only person, or one of the few people, who have taken doxy and a macrolide for over a year without taking something like flagyl to actually kill these bugs.   I don't know if anyone knows what actually happens to people who stay on the first two abx for a long time without starting the third.  If I am a guinea pig for doing so, I think I can say that doing so will not give one a reprieve from getting stronger reactions.  I seem to be going into another phase altogether, even without flagyl, and it is scaring me, because I feel very bad, and I don't like the unkown. 

I started aching a bit a few days ago, and it kept getting worse.  I think I may have a UTI, but it is hard to tell because I ache so badly in so many places.  I feel like I felt when I had a bad flu in college and my muscles ached terribly.  Also, my sinus area hurts, my eyes hurt, I'm sick to my stomach some, and I'm so uncomfortable I can't sleep.  I keep feeling cold and damp, but if I put the heater on me I get hot too fast.  I feel like I'm going to have diarrhea, and I hope so, because the last time I got sick, perhaps because of the pyruvate?, the only thing that seemed to help was vomiting and having diarrhea. 

And it makes me have nervous problems, and then I start worrying about just about anything, like what if this is caused by me taking too many vitamins, will it get so bad I can't stand it (which is almost how I feel now), am I becoming overly toxic, etc....just anything that my mind can conjure up to  scare myself, even though I don't want to do so.  That's the problem with being predisposed to becoming nervous, because these reactions just kick it in, so it is one more problem one has to deal with in addition to the main reaction. 

So, I'm blogging to make myself feel like I am doing something to help myself, since otherwise I feel pretty helpless.  And I hope that by blogging, perhaps someone else who goes through this later can read it and say, hey this is normal.  I hope that it does not scare them away from doing it, because I have gotten better.  Other's blogs about nasty reactions have helped me, because I can keep telling myself that this is probably normal, and I will probably live.Laughing

Since I have fibromyalgia, or did anyway before I started this, aching badly should not be too freaky for me, because according to everyone it should be the most likely way I will react.  However, now it is more surprising, because I will have almost NO fibromyalgia (because of getting better) and then will crash over a few days into more pain than I used to have.  Kind of the one step forward, two backward thing that many say happens before they get better.  However, I am already better, energy-wise, inflammation- wise, so when I crash and burn worse, I am shocked and it is hard for my mind to understand going from being better to being entirely more miserable then I can almost stand.  In so many ways I am better, but these "reaction phases", as I call them, are starting to become a high price to pay.  Not too high, of course, but high. I used to feel like I had a cold or a stomach flu, but now I feel like I have influenza.  I wish I could just be knocked out until it was over.

I guess I'm just going to have to assume that, flagyl or not, I am going to have continuous strong reactions, and this is not going to be easy for me, and I'm going to have to use a LOT more charcoal and other mopping up agents than I have been using in the past.  I can't start flagyl until I can get through pyruvate, I guess, and I can't get back on that until I can get past being sick now.   Sigh....I really was wanting to be on flagyl to get this ball rolling..   

The good news, not that I really care right now, but for those of you who might appreciate looking toward the brighter side, is that I can run around the block or do jumping jacks without being out of breath.  I could do it now if it didn't hurt my terribly sore muscles or make me vomit.  On the otherhand, I might try it now anyway, as exercise has seemed to help me relieve some of my symptoms with reactions.  What a weird thing to do, feeling like I have influenza and running around the block.  Oh, I should mention, I have the pain and nausea of the flu, but I am not weak.  Isn't that amazing?   

I sure hope this passes like the earlier, less painful reactions.  Those earlier reactions I could have lived with longer, but this nasty feeling couldn't be gone fast enough if it was gone yesterday.

No more Vit D, Valtrex, or pyruvate until this passes.  For just this moment I've had enough.  I really hope this IS a reaction.  If it is, it means it will pass, I think, I hope.  If it is something else, well, I don't want it to be anything else.  I don't want anymore unknowns.

Now I'm going to read some old posts written by people who had bad reactions.  I remember some that were so funny, although I don't remember why something bad would be funny, but they were written humorously, and  I could use a little levity. 


Sounds to be as though it might be.   Vitamin D is essential of course, but you might have to treat it in the same way as you are doing the antibiotics, adding it in slowly and waiting until you get accustomed to them before increasing the dosage to what is needed.

From what you say there has been some marked improvement and that is encouraging even if you do not feel like it is at the moment.

Regarding the length of time on only the two antibiotics: I know of one person who never did take Flagyl and reports being much better, there are many people here who have not taken Flagyl until they have been many months into the protocol and when they do start they take very small amounts to start with. You have chosen a different approach with the pyruvate and the valtrex, putting your body through a hard time by trying to address bacteria and viruses at the same time, rather than putting it through a hard time by killing Cpn and suffering from the toxic after effects; so it is not surprising that it is complaining....

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

Thanks, Michele,

I definitely appreciate any positive thoughts right now.  I am still sitting up at 4:37 am US Central Time simply because lying down and trying to sleep is not working.  I am watching funny dvds and trying to take my mind off how I feel and trying to flush some of this out of me, if possible.  As I was sitting here, I was realizing that this may be hurting more because it seems to be pain in my skin instead of/ or as well as in my muscles, as well as my intestines, my ears, well, just about everywhere I ever hurt before.  And my stomach keeps aching. 

I just keep telling myself that I killed a bunch of bugs somehow and this is toxic overload, I can flush it out, and it will pass.  I really don't know if I'm right, but whatever sounds good is the best thing for me to think now.  I also remind myself that I have the strength to stay up, which is definite improvement.  Obviously staying awake isn't going to do much to contribute to my health, but right now I can't sleep as I either hurt or burn somewhere. 

I do not do mopping regulary, as Jim warned me to do in a post.  I still need to figure it all out, but I think I'm getting more motivated.  It is such a confusing thing.  I took charcoal, but started to eat blueberries, then figured I couldn't do that yet, but not sure when I can.  Now I'm wondering how many times one can take EmergenC, or should I just take Vit C pills.  I don't want to take too much of some vitamin or supplement, but don't think there are too many of them that don't flush back out.  Still, I hesitate.  It's hard for me as I've always avoided unnecessary pills, and evidently I probably should be taking an opposite approach here.  Obviously need to do more research.  Brain fog does not help, as I sometimes forget what I read, so I have to write it all down.

Thanks for your encouragement.  Maybe you are right about the Valtrex being part of this.  This is another thing I have to decide.  What thing to concentrate on next.  Pyruvate, Valtrex, flagyl, or perhaps just Vit D.   It's tricky because you don't really know how it will affect you or how much it will affect you until it happens.   By then, well, you just have to learn the hard way, figure it out as you go and strategize for the next time. 

Memphis,TN - FMS, IBS, rhinitis, depres (~20 yrs) CFS, intestine, bladder, pelvic inflam., red itchy skin, anxiety (~5 yrs). CPn titer 1:256.  CAP 6-07 Current NAC 2400mg; doxy 100mg x2, Biaxin 500mg x2, supplements, 1st pulse Flagy

hello reve, its tough to be sure.  but it will pass.  taking it easy (when i can), going to bed and feeling sorry for myself for a while always helps me......

i agree about the Vitamin D.  When I had a very bad reaction in June and had just started taking high doses of vitamin D - I stopped them stone-dead.  Then a few weeks later I just started from 1,000 mcg and built slowly up over a month to 4,000 mcg and have been absoutely fine since.

P.S.  my opinion: always the antibiotics come first.  also, when I feel my post-pulse reaction is getting worse and 'stuck' despite charcoal, etc, I do a Vitamin C flush.  If I am having a bad pulse I do this just once.  Instructions in Michelle's notes in Getting Started.  That sometimes helps turn things round.




M.E./CFS 20 years, intermittent.  Wheldon Protocol - Started NAC and supplements Sept 2007. Doxy and Roxy full dose by Dec '07.  First Flagyl pulse January 2008.  Changed to Tini in December 2008.  Stopped CAP in February 2009 at pulse 16.


you really need to get those moppers on track!  This is a vitally important role in your treatment protocol & should not be taken lightly.  They help your organs & get rid of toxins that mess with your brain among many other things.  If you do this, I dare say you won't be having the troubles you are noted above.

Get out the Emergen C & down some, when I have a crisis I take 2 packets & swoosh it down.  It helps if your reactions are toxin based.  I also take about 8 gms of C a day.

as Nike as coined 'JUST DO IT'




CFIDS/ME, FMS, MCS, IBS, EBV, CMV, Cpn, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplements+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyl/day-5 days<

Reve, Review this list and check of which of these syptoms you seem to have.  Porphyria has no special time, it can creep in anytime.   Also with the use of long term antirepicants there is eventual die off of the cells and turn over occurs and porphyrins can be released.

I use cholestyramine for my porphyria events.

Really this will pass and it is not much fun.


  • CAP(TiniOnly): 06/07-02/09 for CFS
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDN 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support

Reve, how long have you been on CAP?  I'm having an equally tough time, and the 'moppers' confuse me too... 

Diagnosed FMS Feb '07.  2x/day: 600 mg NAC, 100 mg Doxy, 500 mg Amoxicillin, 2000 iu Vit. D.  450 mg Valcyte.  250 mg Azi M/W/F.  500 mg 375 mg Flagyl pulses every 3-4 weeks.  Started CAP June '07.