I thought I better put a note on to say that this is my journal from October to November 2012.  I am putting it on here as a blog in bits and pieces.  I did not find this site until January 2013.

Day 17 Monday 29/10/12

Feel good lots of energy. Knee is a nightmare still.  Don’t feel sick any more.  Still have very slight runny nose.  Seeing doctor tomorrow.  Legs keep getting hot then cool then normal. It moves around and into feet.  Arthritics playing up a bit.  Back of neck still stiff, can’t see Cain (chiropractor) until Friday. 

Day 19 Wednesday 31/10/12

Almost one month of taking doxycycline monohydrate 100 mg and azithromycin 250 mg.  And 600 mg of NACⁱ.

On the positive progress side, I seem to move easier and not have as much pain - back - legs - neck when tired.  And I seem to be tired rather than exhausted. Realize that it is early on in a long term process.  But very encouraging to have less pain and move better. One of my friends has a very low car and getting in and out has been very difficult.  This week it was much easier.

I know this is rather a pathetic preoccuption in the scheme of things - sitting in the sun is about all I can do as walkimg mu dogs is out thanks to the msⁱ.  I am on day 4 of my 9th pulse now - was a sick earlier after Kefir - looking forward to the end of this!

My walklng and balance are still pretty rubbish, I can feel that the protocol is changing that situ - not for the better as yet, but my Parkinsons symptoms are changing, which is certainly giving me hope.

A little history:

I grew up in a small village with 2 older brothers and a younger sister. Healthy and happy, running around from sun up to sundown. With the exception of the chicken pox and a few colds over the years, I was rarely sick. Even when friends had strep throat or mono, I remained healthy.

Then came 2002 and a terrible cold in early December. My MSⁱ presented itself a few weeks later with cold feet, tingling legs and a roaming numbness about my face and spine. Dxⁱ was in May 2003. I was shocked.. couldn't it be Lyme Disease, since I live in an area with a high incidence of infection? The test came back negative, so I started the FDA-approved treatments for MS.

I have felt off most of this week, very tired, nauseous, balance is way off again, sniffles and sore throat, aches and pains.  I feel as if i have done a pulse but i haven't.  i should be pulsing this weekend.  Last week i felt so good almost as if i had nothing wrong with me, so much energy.  I am wondering why this has happened.  I have done 4 pulses and this was to be my 5th.  could it be because 2 days last week, for one reason or another, I only took 600mg NACⁱ a day?  the rest of the time i have been taking 1200 per day. Or could it be because I have been so busy doing things that I have not been drinking as much water as previously?  It is starting to become cold here, winter is on its way, and so I have not been as thirsty.

This is very frustrating. Once a week for the past 3 weeks I puked after dinner. I take 1200mg of NACⁱ at the beginning of dinner and 200mg of Doxyⁱ at the end of dinner. I have been on the protocal for 7 months. What am I doing wrong? the night I get sick I don't try to take it again. I feel defeated on those nights. Any advice will be much appreciated. Many blessings to everyone.

Rachel

For the last 6 years I have been trying to find something that would give me some energy. I finally found Effexor, an SNRI that is used, not as an an antidepressant, but as a neural stimulator for CFSⁱ.

However,it has side effects. On the 4th day after beginning to take it I woke up, stood up, and raised my left foot to take a step. I trembled and I lost my balance and fell -- hard. I went to the emregency room where the doctor decided, through examination, that I had muscle strains. She put me on an NSAID pain killer, Relafen, and sent me home. 

After 2 weeks, the pain was worse rather than better. As we prepared to go to the doctor we noticed that I had a severe rash on my torso.

Hi there,

I'm still just doing NACⁱ at 2400.  It isn't getting any easier.  I am very fatigued.  I haven't gone to physiotherapy for a few weeks now.  I am wondering if I should stick this out a little longer -- or should I drop back?  Maybe I should drop back on the NAC so that I have enough strength to try the antibioticsⁱ?

My doctor suggested that I slow down on the NAC -- but I am stubborn!

I guess my question is:  Can I drop down to NAC1200 and start the antibiotics OR do I wait until my body can handle NAC 2400 and then start the antibiotics?

I am very tired and I'm not thinking too clearly.....

Any advice would be appreciated.

Thanks!

This is the next 7 days.  I only did 4 entries as I was very busy because I felt so well!!!

Day 8 Saturday 20/10/12

Slept well.  still have sore throat but not this morning.  Still feel nauseous but not until this afternoon. Still stiff at back of neck but not as much.  Not as tired as yesterday and legs not as heavy. Slight headache around right eye.

Day 10 Monday 22/10/12

Stronger again. Still runny nose and sore throat.  Had more use of my right foot.

Day 11 Tuesday 23/10/12

Thought I would explain my condition so my questions make more sense. I am a 55 year old gent that lives by himself in a 2 story house that got MS 6 years ago. It has gotten worse over time. I have aquired a number of handicap aids to help in the bathroom, the bedroom, and stairs. I have a stair lift installed in the stairs to get me up/down. I don't drive. I have a cleaning guy come in every 2 weeks to clean, but that's it. At present I take showers by myself but have been looking for help. It is some what dangerious for me to do that. I am diebetic and need to check my blood sugar and take insulin every day. My diebetic supplies, other pills, and food are down stairs.

Today I introduced the roxyⁱ dose of 300mg (150mg morning and 150mg night). I took doxyⁱ 100mg for 3 weeks prior to introducing the roxy. No increase in MSⁱ symptoms and no decrease either...except for my emotions, they are all over the place! Have others experienced this with CAPⁱ? Sometimes it's hard to know if the emotional imbalance I'm feeling is from the CAP, MS, life in general OR all three!

Thanks for reading,

Felicity :)

I see there was a user named Scratch who used CAPⁱ and had real good results, so good that she requested that her blog get deleted so it wouldn't show up on Google searches. Now that sounds like results I would like to hear about. Can any body tell her story?  

We were doing some intense spring cleaning this weekend and found a bag of Diatomaceous Earth (DE). We had gotten it last year to get rid of some very persistent ants and forgot about it. It's food-grade and I remembered that there are health benefits linked to ingesting DE. One of those being that it's a good mopper for endotoxinsⁱ.  Lately, I've been having more downs than ups post-pulse. I still can't get in the car and the flaring, while persistent, is not producing the characteristic night sweats which I believe have helped flush the toxins from my system after previous pulses. Charcoal and chlorella never worked for me....perhaps DE will. I started slow with 1 teaspoon this afternoon. I'll report on my progress.

I realized I have not updated this in almost a year. I have continued to deal with back pain but not convinced it is MSⁱ related. MRI showed no new lesions and the one that is there is not active. Regarding abxⁱ therapy I restarted the rifampin and azithromycin as instructed by Dr. S at Vanderbilt. I don't see any reactions to either at this time. I will be seeing Dr. S for my yearly follow up in July. I will update this blog at that time.

Today I start doxyⁱ and roxyⁱ at the full recommended dosage of 200mg and 300mg, so 2 pills a day of each, the schedule is one pill each at 9am and 9pm. I got my fingers crossed.

Has any one doubled down on this recommedation? Since the pills taken are based on one's tolerances, has any one decided to go for 400(4pills) doxy and 600(4 pills) roxy per day? My thinking is that the faster I can starve the celluar c.pn the faster I can break it's grip on my body.