Vitamins

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Vitamins

Continuing Vitamin D Discussion

The importance of Vitamin Di has been presented elsewhere on this site in the Research section, and in material put forward by David Wheldoni both on his site and at Cpnhelp. I wanted to give an appropriate place for further questions and emerging information about it as it's quite the rage here lately: hence this forum.

vitamin d question again

I have not been taking vitamin di. I have decided to add it since finding a ton of articles related to vitamin d and sjogren's. My question is since it acts as an antibiotic... can you herx from it? I have started it slowly 400 daily and plan to increase.

will eight be enough?

...only time will tell as I get set to embark on my eighth pulse. It was a bit harrowing to get prepared for this pulse as my initial six month prescription for things had run out and I had to get them renewed. Either the pharmacy or the doctor's office messed up and it took a day longer to get them all renewed. I was a little worried there but it was for naught and I was quite relieved to pick up my prescriptions in time to start tomorrow.

Too many battles, not enough troops

"Veterans" also take "falls", or the plodding two steps ahead and one back , sometimes a big one.  Last weekend both Richard and I got whatever was sweeping through the populace.  He, being a pediatrician, has been exposed to virtually everything and consequently gets almost nothing.  So, when something gets through his defences, it is a good one, and he had already shared it this time.   We both spent two days and more flat.  He is now up and running while I am kind of shuffling along behind.   I debated putting this  "on paper" but felt it should be noted:  in a matter of hours - about one month per hour - I regressed in my abilities, walking, energy, thinking.   It was as though my body had too many battles going on simultaneously and couldn't cope.  So we coddled ourselves, eating exceptionally well, sleeping lots (fortunately Dr. R. was not on call that weekend) and got better, which probably would have happened in any case.  BUT - my walking came back as fast as it left, reaching the point by Tuesday night that we could begin flagyli (just can't get enough torment).   I still have a really bad cough but this has not descended into my chest, which has always happened since I was a kid, certainly with a cold comparable to this.  However, right on schedule, a day or so after the first flagyl, my right hip and knee  began  a giant ache.  This has been the main focus for the last three pulses, having pretty well cleaned up my neck, right shoulder (not QUITE finished there), my lower back and other various lesser targets.  Amazing, all this. 

Pulse #4 - I made it!

Hi Everyone!

I've made it past 3 days on pulse #4!  It's all very exciting!  I haven't gone crazy nor have I freaked out.  I am going to go for day 4 and day 5.

I am however only taking about 300mg. of Flagyli per day.  A little over half of a 500 mg. tablet.

Last night, my neck, throat, ear and groin throbbed.  All of the areas where I have enlarged lymph nodes. I am a teeny bit twitchy but I'm working through it.  I also had some aches again in my right lung and ribcage.  I'm having a little bit of a hard time falling asleep, and I sleep a little crazy (move a lot).  I still have a ton of mucus coming from my lungs, sinuses and even my eustachian tubes.

This morning I awoke at 7 a.m. (after going to bed at about midnight), I had enough energy to clean the kitchen (my own kitchen test - haha), wake my children up and make chocolate chip pancakes for them before we started our schoolwork.  My husband didn't wake up until about 10 a.m. and he was just thrilled to see that I'd been up and happy. (he hasn't started his pulses yet, he's still dealing with the Zithi and T3 and he works the late shift because he can't get up in the a.m.).

Antibodies Finally

Well today was my doctor's appointment.  I saw Michael at Dr. Powell's office.

Now, apparently, I have thyroid antibodies all over the place.  Michael is pretty sure I have Hashimotos with an elevated TPO at 412 (normal is <30).  However, I also had very slightly elevated Graves antibodies.  I have a thyroid ultrasound tomorrow (because it is still quite large and painful) and I have a referral to see an endocrinologist.  While I thought I had the perfect dose of propranolol, Michael wrote me a new prescription nearly doubling my dosage.  He said he wants my heartrate under 100 at all times and preferably around 80 bpm.

Because I'm having quite a bit of endotoxic reactions (I shivered and fevered all week), we lowered my daily Valtrex to 500mg instead of 1000 mg.  I'm to keep up everything else and apparently I've been managing my pulses quite well.  I'm just about ready to start another one.  I'm also going to begin taking Ursodial for my liver.

Twenty-eight months - a marker

In the 28th month of relentless, daily treatment, I feel that I have earned the right to stand at the vantage point of a second or third tier trailblazer.  I stand as Pancho to Don Quixote or Tonto to the Lone Ranger.  There are a couple of operatic characters nibbling at my sub-conscious but you get the point.  My first piece of  loud vocalization is as Guner said:  "You may get discouraged, but don't give up".  Jim wished for each of us in his discourse for the new year the stubbornness and long, long vision (and I modestly add: courage) it takes to  do this.  I have a very real problem with sharing MY body with all the freeloaders who are doing just that.  I am indignant - I have worked very hard for my place in life and the workplace and when I found that these nasty little devious creatures were stealing my life, I had to fight back.   After spending much too much time in their immediate presence and on their level, I am leaving them behind.

The Final Chapter - it Never Ends

It was the opinion of our esteemed resident pharmacist who made that remark, which I have incorporated, that this is a life sentence.  We can accept that.  We have learned  to adjust, to be grateful for the chence to do the battle, and to sing the praises of  getting better, which were not chapters in the volume before this someday best seller.

My 36th pulse will begin soon.  I think it won't be the emormous investment of courage and sacrifice of time that it was in the first 25 or so.  My battle will be one of defense, of patrolling the perimeter, so to speak, within a year if I am correct.  My question has become my mantra -  why don't all MSi patients give this "a try" for a year?  There is so much to be regained.

Rica 

Update -- Chain Ganger Chris

Hi CPNers -- It’s been 29 days since I began treatment for CPN – Biaxin 500 mg every other day.   6 days ago I began Doxycycline 100 mg every day and I continue to take Biaxin.  I’ve been treated for fibromyalgiai with injections of Gamma Globulin – nothing much else but a heating pad and lots of Flexall – I felt like fumes were arising from me…I could almost see them.  At this point I’m really feeling pretty good.  I don’t have that sick feeling with CPN and fibro that I had for weeks, not as much brain fog, not nearly as much exhaustion – that only happens when I get up at 4 a.m. and work on the computer all day without a break, and of course then I’m asleep by 8 p.m.  The fibro has pretty well let up, especially my painful mid back which was killing me.  It’s my lucky day that I don’t smell of Flexall anymore.  I still have pain in my left upper arm, but that’s not much, comparatively.  I’ve been drinking lots of liquids – zero calorie artificially sweetened clear soda.  I guess if I don’t drink water, it’s better than nothing.  I’ve been taking prescribed supplementsi.  Been a good girl.  So, things are looking up. Do you think I’m being too hopeful?  

Glutathione injections (if not taking NAC)

Hi Guys,

I was just wondering if anyone here has had glutathione injections, or had it suggested by their doc, as a way of dealing with CFSi, decreasing viral load, improving immunei system, etc.

Years ago the Enviro Doc I am seeing now, suggested glutathione injections and then changed his mind when he Vega-tested me for it and said it "wasn't right" for me.

I wonder now had he just done it anyway, if I would not have fallen into the pits of CFS over the following years.

This is the same doctor who advised me against using NACi unless I knew my heavy metal status (see the thread "NAC and Mercury"). 

If one were concerned about their heavy metal status, and hasn't been tested yet.  And is taking the abxi and having a hard enough time with them (without adding in NAC - despite all its apparent benefits), would glutathione injections be at all helpful in the meantime in terms of decreasing EBVi viral load (I am especially thinking), amongst other things?

Hope, Disbelief and Reality

Having finished 26 months of this sometimes hellish protocol, I have been through the months based only on hope.  Then came the months of disbelief and "I couldn't do that before", about  twenty-three of the two together.  I am now in the reality phase and I love it.

My visit to my doctor was a few weeks ago.  For his benefit and to prove once again to myself that all this was indeed true, I insisted on doing the shin test, the stork test, the feet-together-eyes closed-arms outstretched for 30 seconds (we really need to name that because we are going to need it more and more).  Just as "normal" people could do, I did all with an A+.  I still have trouble getting past 5 seconds standing on my "bad foot" alone, but never did I think I could even stand on that foot at one time, since I couldn't stand on both at the same time without a cane or walker. 

CHAIN GANGER -- DIAGNOSED NOV. 7, 2006

Hi CPNers,  My basic disorder is fibromyalgiai which many doctors think carries the autoimmune factor.  I've had sporadic bouts with it since 1989.  Fibro symptoms are heavy muscular pain, fatigue, brain fog and itchiness.  The present acute attack began in 10/06, brought on by mega stress factors in my life.  When I failed to respond to gamma globulin injections and home treatment, and instead worsened, my doctor ordered a CPN test which came back positive on 11/7/06.  The test further indicated that I'd had CPN for years, but I never felt CPN symptoms before this.  I've praised my doctor for being so knowledgeable on CPN.  He visits CPNHELP.ORG frequently.

This year I had a 5-month bout of severe exhaustion, undiagnosed; coulcn't do anything nor go anywhere.  In 2004 I had 7 weeks of even more severe exhaustion, undiagnosed.  I wonder if the strange exhaustion was caused by CPN.

The Water Less Murky

Hoping to postpone this pulse for a month, I was enjoying my newly resumed "winter schedule" of many fewer hours in the barn and my measured walks.  Well, my body, particularly my legs, said  "No you don't, not yet!".  Yesterday, I took charcoal for the first time in a couple of months (!) but to no avail.  My legs quietly spoke, though did not clamor as in the past, that I would ignore their demands at my peril, or at least my inconvenience.  So, this morning I began pulse number 34, this time pure flagyli.  I can't say I don't have anything against tinii, but being of sounder mind than body at this time, I need what flagyl gives me - physical recovery. 

Pulses 32 and 33 were:

#32 - 5 full days of tini which by day 5 had me rubber-legged though energetic.  My back felt and sounded  like a bag of wooden balls, well-oiled and rattling around as though their job were to make as much noise as possible.    Not at all unpleasant, this was also a curiously clean feeling.  My walking continued to deteriorate in the next week.

flagyl and tini - the ongoing discussion

This was my 33rd pulse  (29 flagyli and 4 tinii)    On Sept 27 Dr R and I began 5 days of tini, each taking 500 mg 2xd.  Dr R has no observable physical changes so I will limit this to my own.  I was able to work all day every day in preparation for the show where we met Ken and Kelly,   All exhibitors must be on site because that is when the youth show is, so we had time to visit.  The next day we arose from our cots by the doe pens at 7am, showed all day, Richard packed up most of our "stuff" (of which there is an astonishing amount), and I drove us home the 200 miles, arriving about 1 am, when we milked and fed  By way of bragging, we went Junior Grand Champion, Senior Grand Champion,  Best Dairy Herd in Show and Premier Breeder.   As expected, my reaction to tini had me increasingly rubber-legged but full of energy.  Folliowing up on my suspicions of previous tini pulses, I began flagyl 8 days after ending tini with amazing results.  Since the State Fair is this coming week-end I abbreviated the flagyl to 3 days, because on the heels of tini I was afraid I would descend too far down the road of weirdness to return  and be able to walk well by then.

Tetracycline & B Vitamins

I have not read this before.

Antibioticsi, Tetracycline
Niacin">i should not be taken at the same time as the antibiotic tetracycline because it interferes with the absorption and effectiveness of this medication. Niacin either alone or in combination with other B vitamins should be taken at different times from tetracycline. (All vitamin B complex supplementsi act in this way and should therefore be taken at different times from tetracycline.)

http://www.umm.edu/altmed/ConsSupplements/VitaminB3Niacincs.html<

Is it true we should be avoiding B Vitamins around the same time?

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