Still Fighting to Take 3rd Abx. Stopping Biaxin for 1 month.

Well, it's been so long since I've posted, I'll be surprised if anyone even remembers me.  I've been fighting to get to take Flagyli (or similar) and my doc wanted me to take pyruvate and then take rifampin off and on (but not take flagyl).  I wasn't up for the rifampin off and on; still terribly confused by his desire to avoid flagyl and pulse rifampin, but went ahead and took the pyruvate. 

I  vomited like I had food poisoning and had some other strong reaction on day 9 (or got the stomach flu?) and stopped taking pyruvate temporarily.  I got a similar reaction about a week later even though I hadn't started taking pyruvate again.  My gut instinct is that it was a delayed reaction, but I have no real idea.  I felt really sick and weird for a few days. 

 I gave in to my desire for a nice Holiday experience and did not take pyruvate during the holidays (but kept taking doxyi and Biaxin, which now keep me feeling good, I think).  Then I started Pyruvate a couple weeks ago.  On day 9 or 10 I started feeling a little nauseated, but then I started really feeling muscle twitches all over my body all the time.  And finally, my heart area started thumping like it was throwing pvcs. I felt like I was in a weird fog, couldn't think, and was very emotional, very depressed and had bad anxiety.  I hardly slept for two nights.  My brain stayed in a fog.  I almost felt like I was having a bad psychological reaction. 

My doc did an ekg and determined that my QT (I think) is too long (some sort of length of time in between my heart beats) and it may be normal for me or may be caused by Biaxin.  Now I have to wait a month (stopped taking Biaxin last Thursday) to find out.  If it reverses, he probably will not want me to take Biaxin again for fear of getting screwed up heart beats.  If it stays the same, I just have a weird heart, and maybe he'll let me start again.  Doc thinks the Biaxin would have made it beat weird, if it did, and not the pyruvate, but I think the pyruvate may be the culprit.  I do not think of pyruvate as a harmless supplement.  It scared me with all the muscle jerking, and I think it may have had to do with the jerking feeling around, or at, my heart also.  My doc said that he has had other patients have muscle jerking with pyruvate.  He just didn't think it would cause the heart to do anything.  Again, I'm not so sure about that. 

Since I became very anxious, I started panicking about the muscle spasms and obsessing about having parkinsons or something.  There's nothing less useful than scaring yourself silly with even more imaginary things when you're already fighting a real CPni, lol.  But that's what happens when your emotional overload button gets pressed, very much perhaps from the whole illness/reaction thing screwing with my brain chemistry.   Now I'm trying to get over a sudden surprising problem with depression and anxiety, and I wish I knew if it was caused by a good (killed CPn) reaction to pyruvate, or a bad (just a weird side effect) reaction to pyruvate, or if it is totally unrelated and I'm just falling apart. 

I am also concerned about being off Biaxin for a month, as my symptoms usually come back when not taking abxi, and within 3 days I got pelvic pain and now I'm getting a UTIi again.  I doubt not taking Biaxin all of a sudden will be a simple  or well tolerated change for my body which has grown used to Biaxin for over a year.  I'm really very tired of not ever being able to take flagyl yet, due to my docs dislike of it, and now I'm afraid of not being able to take Biaxin, or perhaps any macrolide.  Then what will I do. 

My hope is that my heart beats weird on its own, as I do have mitral valve prolapse, and that I can start Biaxin or Azith again and convince my doc to let me take one dose of flagyl. 

My fear is that my reaction to pyruvate is just a prelude to a much worse reaction to flagyl.  My only solution to that would be to go very very slowly.

ON an interesting side notd, the odd red areas on my skin at my temples, that only occurred after having been on abx for quite some time, have almost gone away again after stopping Biaxin.  They did that when I didn't take Biaxin for a couple days once before.  Doesn't that sound like heat shock proteini inflammationi to you?  It certainly IS connected to CPn or to Biaxin. 

On day 8 or 9 of pyruvate this time, just before I really got messed up, if I did, indead, get messed up from pyruvate, I must have already been emotionally a little off, and I became upset enough over a minor discussion that I threw a plate on the floor and broke it.  I should then have known that something was just not right.  Later, I thought about all the other stories (fortunately funny ones) that many of you have told about losing it during reactions and wondering what in the world had gotten into you.  I'm not in much of a humorous mood now, so sorry I can't tell my story in a more funny light.  But I still see the humor in it. 

Finally, for any of you fearing for your heart taking Biaxin, my doc, who had originally scared me about the dangers of taking abx, did tell me that the changes that may have occurred to my heart while taking Biaxin are reversible.  Something about the Biaxin changing the channels in the heart's exterior walls that regulate calcium , etc.  They change back after stopping Biaxin, but you don't want to let the changes that may occur while taking Biaxin to cause your heart to start beating way out of wack. 

Anyway, I still think it was the pyruvate making my mitral valve prolapse go wacko.  Well, we'll see.  In the meantime, wish me luck because I'm a bit stalled in the progression business.  I was quite happy with how I was progressing with doxy and Biaxin, and I absolutely don't want to loose ground. I almost could forget I had CPn. 

Have any of you had any bad or weird experiences with Pyruvate?  I'd like to know how others do with it.  Are many of you taking it yet?  Last thing I read was just about Jim taking it, but I've been out of the loop for awhile.

Reve' 

 

Comments

Reve, sorry I haven't

Reve, sorry I haven't called you back.  Things have been crazy for us lately.  started feeling better after my 2nd pulse then have so much pain in my shoulders and neck.  I think the infection is in those areas and also my lower back.  I've been in so much pain, can't sleep but 2-4 hours a night, etc.  I use roll on biofreeze like crazy.  I've been making myself do activities. It's been something almost every night at church, 2 bible studies and a dinner every week, plus projects for other people, plus we are having our sunday school group over tonight for a valentine party and I only got 3 hours of sleep! 

 

To your question, Doc gave me flagyli because I've been sick for so long.  Since 1989.  Plus I asked for it.  He wants me to take the 2 antibioticsi and the Flagyl continuously but there's no way I cn do it so I've worked out a system, Doxyi every day, azith MWF,Flagyl when I can plan some degree of down time (which hasn't been possible)  I'm going start another pulse Sunday and see if I can go to 4 days this time.  As to why doc gave me Flagyl, he started me on biaxin and it gave me a rash so he swithed me to doxy and added the azith, then flayl about 3 months later.  Maybe he's afraid it will make you too sick?  I have sticky blood so maybe I'm sicker than you?  I don't really know.  I promise I will red your entire email next week when I can take a breather.  I've been trying to get back to cpni to answer you.  Sorry I couldn't be much help.  Take care of yoursel.  Answer me back.

FMSi/CFS 1995. tinnitus">i, ibsi, sinusitis, EBVi, NACi 2400mg, valtrex, cortef, armour, doxy, biaxin, tinii, vita c 5 - 10,000 daily 

Hi Reve, Good to see you

Hi Reve,

Good to see you here again.  

Something a little odd comes to mind from your Dr's comments re; pyruvate.  You said, My doc said that he has had other patients have muscle jerking with pyruvate.  He just didn't think it would cause the heart to do anything. 

Well, isn't the heart a muscle?  I would think if others had jerky muscles, your heart could "jerk" too!  So I'm thinking (like the other comments here) that you may have had lots more die off using pyruvate (which it's supposed to do) causing more symptoms of porphyriai and/or the pyruvate itself affected your heart muscle.

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

Don't believe everything you think!  

good to hear from you

good to hear from you Reve!

So, you have had a visit from my little friend the Troll Queen - or King if that applies! When these episodes happen, there is some seriousness of course.  Humour though, helps us get through to the other side.

for toxins I take lots of C, EmergenC, glucose & I think I may be the first here to suggest Chitosan - instead of Charcoal - too hard for me to fit it in.  I take about 5 gms of Chitosan before food 3X a day; it works for me. 

Also, as I have trouble with depression caused by my CFIDSi, I take Inositol to even things out. 

I just try to stay ahead of the toxins as much as possible.

Keep us posted & keep on keeping on.

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

I've been on a Doxyi/Biaxin

I've been on a Doxyi/Biaxin combo now for about three months and have not experienced the heart issues (I guess I'm lucky). I have been on Aciclovir for the past month as I was having what I can only describe as mono like symptoms (all the moppers weren't helping) which my doctor thought may be the result of us attacking CPNi which irritated EBVi & HHV6. When they need energy -  inflammationi is the result. I have to say, I'm feeling much better. Have had high dose Vit C IVs once a week for the last three and was on Rifampin for three days after the last IV. He also increased D to 6000 units a day.

Doc has not put me on pyruvate because of IBSi issues - it can be rather harsh and I've finally gotten that under control.

Like Louise stated "ups and downs in the course of this treatment". I really have learned to appreciate the ups, expect there will be downs from time to time, but luckily have a great family support system and doctor who understands treatment.

 

 

CPNi, EBVi, HHV-6, CMV - Biaxin 500mg/Doxyi 100mg twice a day, NACi 600 mg, Acyclovir, all supplementsi, natural hormones and BP meds.

There are no studies that I

There are no studies that I am aware of regarding High Density Chitosan being effective for fat soluable porphorins, however unless you are frankly allergic to Shell fish it may fall  into the catigory of over the counter available options, likely not to do harm and relatively inexpensive.   Here is where I order it and also several other supplementsi, their service is dependable and expedient.

 http://www.wholehealth.com/index.cfm?fuseaction=category.display&category_id=150< 

I have had is sitting in my supplement cabinet since November (yes the stock of supplementsi and Rxs are large now that it has taken over a kitchen cabinet for ease of inventory control etc.).   I have taken it the past two nights and have no untoward effect.  

I also have three bottles of charcoal (sitting there since I really determined in Oct. of 2007 that I just could not get enough of it into me to make a difference given my set of complaints taking it just was to much for me and my tender stomach. 

I currently have packets of cholestyramine which I use periodically when porphoria gets the best of me, I have settled that once I determined that I need it  (I do take it several days into pulsing and take it for 7 days at that time too as most people take the charcoal) and for those other times that I just get it that I am not mentally clear, emotionally settled and becoming generally overtly fatigued again, this is what I do.

I use two packets of Cholestyramine in a 10 oz glass of waterat bedtime taken through a straw, ( I use two packet for the first 3 nights and 1 packet per night for the next 4-5 nights)this is taken about half an hour after my Rest and Restore supplement (I order from www.fibroandfatigue.com< ), my phosphatidyl Serine and Choline (previously part of a combo supplement given to me by my MD) for cortisol stabilization, and my Sublingual VitB12 5000mcg.  While waiting to take the Sleep supplements, I do something quiet, read, meditate in upright position, occasionally watch PBSTV channel.  I am all prepared with a small fat stimulating snack which I eat prior to taking the cholestyramine.   I have the cholestyramine packet(s)  ripped and ready to mix at the bedside.  I have an additional glass of water to chase it down with, I sit up for maybe another 5 minutes to make sure it all gets down well into the stomach.  Then I pop off to sleep for 6 - 7 hours.   It seems to me that as long as I keep ahead of the porphorins, moving them out of my system, my porphoria list-like complaints are not evident to me and I can tolerate a lot more without getting out of balance etc.  

I am hoping that ChitosanHD which is reported to be more concentrated that the older Chitosan formulation and should not be confused with it,  can if added intermittently during the month, keep me "porphorin-effect free" (non-standard term here, but it says a lot with few words).   I still will continue to use Cholestyramine with pulses as I have for the past 15 months, and after a week of ChitosanHD , LipSan Ultrabrand available from Wholehealth.com if I still feel porphrin-effects, particularly to my affect!

I realize that personally for me with my system, fat soluble porphrins may have been associated with my complaint list over the years even prior to CAPi tx.  ChitosanHD is certainly a lot more economical that my other effective option.

Reve, I hope that gives you some food for thought.  I started with the cholestyramine because I had much the same presentation of symptoms as you in many regards.    Of course I remember you, as a fellow CFSer we started this journey around the same point in time.  

I am sorry to say that there are periods of ups and downs in the course of this treatment.  Sorry that you are at a down point now.    Louise

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

I'll reiterate the warning

I'll reiterate the warning about rifampin. I'm about to pick up a prescription for it (just got it yesterday) and I've been warned several times about not using it short-term and not starting-stopping. Also, liver enzyme testing is recommended while on it.  Be very diligent about taking your NACi while taking rifampin, too.

I vote for die-off as the cause of your distresses. You need to work at getting that junk out of your body as quickly as possible. Much charcoal, water, antioxidantsi, are in order.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Reve- Of course we remember

Reve- Of course we remember you here! Good to hear your report, even if it's about a rough time. I'm with Norman on the charcoal. Your episode of severe nausea, rapid heart rate, brain fog, anxiety and depression all sound like a severe porphyriai episode. I'm not sure why there would be a delayed reaction with pyruvate. Any potentiation of the antibiotic that I had from it was more immediate, but it could be that the tissue levels of porphyrins build up over the 9 or 10 days when are on a more potent mix of agents. I'm sorry to hear it's been so difficult to get a regular treatment. Rifampin on and off is not supposed to be how it is used as resistance to it can build up rapidly this way.

 

CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

The reason doctors care

The reason doctors care about abnormal QT intervals is that they are associated with ventricular fibrillation (which from the patient's point of view means dropping dead on the spot). Take care. As for anxiety, that is often from porphyriai -- and for that, activated charcoal helps a lot.