Vitamins

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Vitamins

B12 nasal spray I find better than injections/sublingual

Hello Everyone,
Several months ago my doctor recommended B12 nasal spray for me for chemical allergies.  However, I have read since then it is also being used for CFSi.  It also makes a great alternative to injections (ouch!) or sublinguals (which I find ineffective). 

Basically there is no blood-brain barrieri between the tissues of the nose and the brain....so voila a very nice direct route for B12 to get into your brain tissues.  Something I reckon much needed for CFS and MSi.

I have found it also helps tone down my rosaceai redness a wee bit.  Likely the NO (nitric oxide) scavenging having the B12 so saturated in those tissues close to my rosacea">i.

I get it on RX and one spray bottle has a one month shelf life and costs $45 Cdn.  But it is worth it!  You have to keep it in the fridge at all times.  My doc prescribed methylcobalamin but I understand that hydroxycobalamin is the more common form used by compounding pharmacies in filling this prescription nasal spray.

4 days on...

Saw David Wheldoni on 15th September 2006. A truly heart-warming experience. 

4 days on the CAPi now. For RR-MSi<

 After 2 days on doxycycline, I noticed I could stand with less stiffness, which I am imagining could be due to the anti-inflammatory effect of the antibiotic. Pins and needles are already reduced!

 This morning, I was somewhat foolish and tried the doxycycline and NACi on an empty stomach. Not a good idea. Quite nauseous. Won't do that again in a hurry.

 No real die-off symptoms yet. I have a feeling I may have kept my bacterial loadi down over the years with constant vit c and other antioxidantsi. I can't help but feel my MS would be worse than it is if I hadn't supplemented so furiously over the last 3 years.

 Anyway, I am going to try and keep this journal ongoing. Probably in weekly installments.

Kryptonite

Recently there was a discussion of NACi and I went back and read the updated page on it.  I doubled my intake of NAC, from 2 to 4 per day, over several days and am thrilled at my reaction!  My energy level has been improving for months, but this was like skipping a floor or two while climbing the stairs (which I can do now, too, without even holding on)   It is not only my energy level, but some reconnections which make no sense yet.   I can feel and control muscle movements that I have not been able to do for literally years.  I am not talking day and night but a very definite giant step toward normality and confidence of ability.  I hope I can persuade Richard to double his this weekend.

All this brings Dr. R into the picture.  He is in the very center of pulse #4.  His bp is literally all over the place - mostly sky-high.  It spiked lately to 160/91!  Before that, for the last few months, it had mostly ranged around 120 - 135/60 - 85.  As needed, he has been back on 1/2 Norvasc - no sense pushing our luck.  His main reaction - nausea - has been replaced by slight zombieness and overall ennui.  Optimist that I am, I am struck once again at the battle this very nasty bug puts up.  If all this well-planned strategy had no effect, I would have to believe that there was no hope for winning.  Now, if only I can talk him into taking more Kryptonite....

An addendum of optimism

This is only an addendum to my blog of 3 days ago.  This is now the 5th day of my 30th pulse.  Everything we have said about being long,  hard, getting worse before we get better, having strength and determination to do what we have to every day just to get to the next day so that we can get to the next day and take more pills,  following a tiresome routine, exercising when we would rather not, eating well when the junk food is so tempting, etc., etc,......is true.  BUT, yesterday I did many goat pedicures, as Joyce calls them, and today, when Dr. R was called away for an emergency c-section (that is, after all, his job) in the middle of milking, I did it.  Then I did my own side of morning jobs, which has shrunk down to a minimum the last few years.   Even as I write this, I am in disbelief that I can do these not easy jobs and still be on flagyli - days 4 and 5!   A few months ago I was still being flattened by the end of day 2 and  staggery after 2 pills. 

Pulse number 30

Yesterday was a REALLY bad day, but today  I have risen to a new level.   This is the 3rd day of my 30th pulse, 3 of tinidazole, but a primary "diet" of 27 of flagyli, which I have learned does not have to be capitalized because it will get you whether of not you pay it obeisance.

After  a seemingly endless series of months (23) of this tortured protocol, I survived yesterday,  even though at times I doubted I would, something ended and I came to the light at the end of a very long  tunnel, and there was no train, but only  sunshine and peace. 

A few months ago I took tini for the first time and after 3 pulses of that my sleep very suddenly became normal, after many months, maybe years, of insomnia, helped by melatonin">i. It may have been coincidental.  I had not needed melatonin for weeks and weeks until night before last when I began this pulse and revisited the land of insomniacs.  There were a bunch of us there.  Today I took my 1st flagyl of the day, 3rd day of my usual 5, and 40 minutes later I was not staggering or even very "weird", as I have always been.  Now, three hours later, fortified by my peanut butter and jelly sandwich on double-fiber whole wheat bread, I am writing this and planning the rest of my day which includes "doing feet", something that never gets finished in a herd of livestock.  The amazing part is that I can think of doing it during a pulse and alone.  It is becoming more and more apparent that there are very sudden shifts (there's that word again) in our progress,  even after 2 years.  Many of us have had them - "Oh, I couldn't do that before!" but I did not expect to have one now.   

Letter to Medical

Since my first attempt at this is floating with the astronauts I will jump right in:   Dr J has watched this mis-adventure from before day 1 and was therefore in a very good position to suggest that he write a letter to either the Med Journal or the board - I really don't remember and it really doesn't matter -  about "us".  He suggested I gather information about "a hundred" of us with MSi about our progress on a scale, length of time,  and maybe meds.  I said "How about 10"?  He said ok.  He suggested not "diluting" it and confining it to MS because that is what he has seen and if we spread it out to other diseasesi it will lose some of its strength.  So anyone who is interested in furthering this attention-getting outcry, please "sign up".

Buying Vitamins

Could i get help on where people are buying there vitamins from. The amino acids and some of the vitaminsi< here in austrailia are very expensive and i was woundering if anyone could reccommend a company in the US where i could bulk buy.So i can see if it works out cheaper buying them from there.

Thank you

Taking many supplements vs. just taking a multi-vitamin

Anyone on the capi that just takes a multi-vitamin a couple times a day instead of taking all supplementsi separately?

Would there be much difference?

NAC Question

An NACi question:  One of my friends is about to start the regimen and he is planning to 'test' with NAC first.  He is currently taking
Arthrotec and allupurinal,  along with a routine of Claritin.  My impression is N-Acetyl Cysteine doesn't interfere with any meds, but I kind of like him (as do his wife and kids) and don't want to kill him, so can anyone reassure me about interactions?

astaxanthin

Is anyone taking astaxanthin?

See http://www.astafactor.com/description.htm<

It's supposed to be a whopper of an antixodidant...? 

 

 

Dr R and the Ghost Blog

If I were the real thing I would not be a ghost writer but this story must be told and will be as accurately as possible.  

Dr R has now been off of 1 of his 3 bp meds for a week and today his bp was 112/59 - pulse 59.   Even in his deepest sleep and 3 meds I bet it was never close to the highest of the past month or more.    The usual was at about 149/89 - last January, before beginning abxi.  Now it has ranged from 144/84 to 136/75 to 116/69 to 107/65 with the lower range being much more usual.  Today both of us are less tired than in the past week.  I asked him if he knew what that meant, and of couse he said no.  I said "You are following the pattern of the rest of us - this is the third week of the cycle and you are sick, too".  Then I stopped him and looking him straight in the eye, said "Even the most skeptical of you guys will have to think something is happening"    So, we leave in 1 week for the Nationals and I think will "do" tinidazole  instead of flagyli.  This will be #3 pulse for Dr R. Doing flagyl at the Nationals  might be kind of like the astronauts going outside the ship without a tether.

Finding surprises

It finally happened.  After 23 flagyli followed by 3 tinidazole and another flagyl pulse without a break there was no change at all that I could tell.  So the 3 weeks went by and I began my next flagyl and the 3rd day my walking was close to where it had been months ago.  I did not know if I had lost precious ground from switching to tini or it was working silently.  I may have been looking in the wrong place:  my sleep is deep and delicious with no melatonin">i  for a month.    I am now in the midst of my 27th flagyl and barely notice it - incredible.    So probably tini was doing behind the scenes work but the physical side was unchanged with no improvement at all for me.  Maybe the neurological  problems will respond to it for some or beginning with tini is gentler.  Certainly flagyl was brutal for me at times but also for me that time seems to be OVER!  My time for shouting that from the tops of tall buildings and trees may be here.  I hope that my walking will  continue to get better but my energy level is pretty good and the Nationals are looming.

CPn Tx and my recent labs...(Attn: Bio nerds and CFIDS folks...)

I would love any help, suggestions or advice regarding the following:

1. My most recent labs show Vitamin Di way under normal (despite supplementation with cholecalciferol). My result was 15 where 20-200 is normal. Does CPni treatment *deplete* Vitamin D or increase the need for Vitamin D in some way I don't understand?

2. I also compared my most recent labs to some from pre-CPn treatment. The counts of neutrophils and monocytes have dropped significantly, they went from normal to very low normal.  My absolute monocyte count has dropped in half and my absolute neutrophil count has dropped by about 60%.

I'm not getting any colds, flus, or immune-related problems as of yet; in fact I have had a reduction in such since beginning the CAPi, but these labs are distressing- if they are meaningful in any way, which I am certainly not sure of.

Flagyl and antioxidants

Regarding Flagyli and antioxidants,

Given the way that Flagyl kills the cryptic formi of CPni, does it make sense to withdraw antioxidants for the length of the Flagyl pulse?

Just a theoretical inquiry- the reasoning is very likely to be over my head but I would appreciate any response!

Thanks. 

 

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