Maybe not Olympic material

Sarah can move these around from ThisisMS to here but I have to do it the old-fashioned way so here goes.  This is an unplanned update.  Walking in from the barn I decided to go for a walk and thought about my dream of running so I tried it.  It was not quite like my dream but I did it!  I actually RAN.  It was exactly like a toddlers first attempts but it sure counts with me.  As usual, I had to try it three times cause I have a wild imagination but yep, I did it again.....and again.


Ignorance is voluntary bad luck.   Lauritz S.  A True Viking

If you come to a fork in the road, take it.  Yogi Barra 

Baby steps

It seems my all-body aches have gone away, and even my achey right arm is calming down. I'm now able to wash my face and brush my teeth by myself. I can stand, for a while, and transfer into and out of my power chair on my own, tho it takes some time. My typing is vastly improved over last August, and I'm on track to get back to cutting gems again by April. I'll keep on improving from there.

I'll re-start Flagyli in February. I'll also switch to azithromyecin then, too. Flagyl wasn't too bad for me, but it might get bad now that I'm really hammering at CPni in all stages of life.

Just thought I'd post about the progress I'm seeing, for those who only see the bad side of the treatment. It works. Slowly, but it works.

Getting off the fence.

Had been lurking on This is MSi for a while.  I finally made the commitment to myself to try the Wheldon Protocol.  My GP was very interested.

I was placed on the basic Doxyi 200 daily and Azithromax 3x/wk, along with the supplementsi.

3 days into the protocol I experienced my first J-H reaction.

Severe L leg spasms which makes walking and standing painful and distrubs my sleep.  This particular Sxi was never that severe during my first MS attack.  It is very distressing.


MRI coming

There will be a new kid on the block soon.  I asked my usual question- "Do you have any friends, relatives, or enemies with MSi"?  The answer was affirmative.  He should be here shortly under the  name "Skymaster" or "Skyman".  As soon as he posts with the "submit" button we can communicate with him!

 On to the serious matters.  My B-12 was actually high at my visit to my PCP Wed.   He suggested cutting my dosage down from the 10000 mcg. to 5000  I had increased it recently and it must have worked really well.  Dr. Stratton said in my semi-annual email that I seem to have the cpni under control and "in the near future" could stop Rifampin.   I  never thought I would hear such a thing.  Problem was, how was I to know when the near future arrived?  "When I no longer have reaction to the drugs."  Well, I certainly have LESS than I used to so I'm partway there.  He suggested 1 to 3 years more on a regimen to be certain. 

My blog

My story started in feb 2003. I was healthy or so I thought until then. I did have little signs, IBSi and some heart palpataions. These were easy to dismiss because they came and went. I did have pneumonia when I was 25 . After that I suddenly became allergic to most antibioticsi. The allergy always happened on the 4th day.In May of 2001 my son and I got a wierd virus that left me with a cough every spring and fall that would last for a month. Then in Feb 03 my gland swelled in my neck. I was put on zithromax and nothing helped . Levaquin next that I had to stop on the 4th day because of heart palpataions. After this it was all down hill. Symptoms progressed to severe swallowing difficulty,dry mouth end eyes,fatigue,panic,numbess,tingly,insomina,night sweats, brain fog, and the list could go on. My blood work is all negative for rheumatic disease all that shows is an elevated white blood cell count.I found a website that treated rheumatic illness with minocin.I had my blood tested by pcri and tested positve for m. pneumonia and m. hominis (low titres) and cpni iggi and igm positive. I started minocin in feb 04 . The first week my eyes swelled shut. At four months I started feeling much better. I held steady with improvements until aug.05 and then a big relaspe. I found this site and have convinced my gp go call Dr.S and get me started. I have upped my b12 to 6 a day ,added b100 and folic acid">i ,naci and a couple of other things.What I have noticed since upping is that my nails have grown hard and fast. I am currently upping my minocin(dr. s) told me to stay on that. I do notice on the 4th day after the increase my face and neck go numb, then painful and then they calm down. I go to my gp on tuesday 1/17/06 to start zithromax. I will be testing  blood again at that point to see where I am. Thanks to this site I really feel I can get well again. As a side note my husband has ra (in remission) and the dog was diagnosed with lupus because of dry and inflamed eyes he was put on 1500mg of tetracycline and niacin">i and is symptom free. Lucky dog. It did take him 5 months and he slept the whole first month. He also limped alittle in the first month of treatment.

Pulse one over

Inquiring minds want to know, thank you for asking so here's the scoop:
Flagyli pulse one is done as of last weekend. I finished it on saturday, so Sunday I had a glass of wine. Here's what I have noticed:
to review, I had one pill of flagyl on about the 12 dec then two days of it about 20-21 then a full pulse jan 3-8.
All through dec I was seeming weak. I fell down several times. I fell on two occassions twice in one day. the day after the flagyl pulse, sunday, I went to the grocery and had I not had the cart would have fallen three times I kept tripping badly on my weak floppy leg. I was DEFINITELY not walking well. It feelslike I have had an exacerbation and unlike others I am not noticing a clear going down and then improvement. It's more like I'm just worse over all, but then I trickled alto of flagyl in over the month too. I'm going to wait a full month before doing any more. Since the end of my pulse then I've been taking a hot epsom salt bath every day just to try to detox (plus it's so fun I have bubbles in there too) as well as making sure of the supplementsi. Jim points out the vitamin c flush is good and it is. It clears up that dull headache and unwell feeling. I am not having any good things happen yet as a result of the pulse. I am still kind of weak but day 5 post flare is tomorrow so maybe then we'll see. I'm going to the gym.

More good news

My all-body aches seem to be subsiding. Looks like the NACi really has been helping make the EBs of CPni burst prematurely. I may be able to re-start taking Flagyli again next week, after I feel better, and really get moving on killing ALL the CPn off.

Meanwhile, I see small incremental improvements constantly. Just today, my caregiver Vikki spotted major improvement in the spasticity of my right hand while trimming my nails. Even typing this JE is going easier than before. Baby steps, every day, add up pretty fast. Heck, last night I got into bed with minimal assistance ;)

I'll soon be switching from roxithromycin to azithromycin. I'll have my doctor write the script for 60 pills, "Take as directed." One prescription of 60 azithro pills will last 4 months, and cost me the same as a 1-month prescription of roxi. I can really appreciate the savings.

Our Journey Begins

I want to begin this blog by thanking everyone who has helped my family to gather the information that we felt was necessary to begin this process. You are truly some amazing people, trailblazing and courageous!

A bit of background. It is my husband who has MSi and he was diagnosed in May 2004 at the age of 40. Prior to his diagnosis and only with hindsight, we agreed that he had minor symtoms for about 10 years prior. They were the usual ones-occassional color changes in one eye, floating black spots when we jogged and minor numbness in one side of one hand. Again, all were transient and events that did not grab our attention at the time.

After a sinus infection that would not quit and a course of abxi and oral steroids, my husband was referred to an ENT. By this time he had developed a strange feeling in his face which was accompanied by a euphoric feeling that came and went rather regularly. This prompted the ENT to comment that this sounded neurological and referred Jim for an MRI. The rest is history, the MRI showed multiple lesions consistent with MS, a spinal tap was performed (we still don't know what it revealed because the neuro said it was "negative" which meant Jim must have MS) and we were given a choice of CRABS.

Taking a break for a bit

After several months on the David Wheldoni protocolsi for CPni, I can tell that it's working. I keep improving, yes, but I ache all over. As I can't take most pain pills due to my messed-up esophagus, I've tried to just tough it out.

As Ann Raynd suggested, even Atlas shrugged. I need a break. I'm *temporarily* stopping doxycycline, roxithromycin, Flagyli and NACi. I'll re-start them in a few weeks, after I've had a chance to sleep a full night without writhing in agony. I'll still take the Zocor, as this helps me rebuild and it's done a stellar job on my cholesteroli, and the antibioticsi for a UTIi, and of course the estradiol and Prevacid, but that'll be all till later this month. I'm also dropping the DHEAi, becase I'm seeing re-growth of body hair and a renewed interest in sex, neither of which appeal to me.

New Years resolution to post progress.

Hi all, I have been  a member of this site since it first began but I haven't  posted to the blog. I am on Stratton protocol and am a patient of Dr. Powell.

I am still sick but have seen some remarkable progress on the antibiotic protocol. I wish I had kept a journal but I was often just too sick when I was having significant herx reactions. It is my New Years resolution to began a blog here I want to keep track of progress on the antibiotic therapy and I am going to try to go back and present some of my history. It is a long history as I have been ill for about 20 years. I hope I can help others with my story.

Marie AKA Gail 

KK2's Protocol Update

Happy New Year everyone!  Great news!!

Just a quick update:  My Azithromycin arrived, so am back on the Doxyi/Azith regime.  Azith. days are always more energetic for me.  Also started with an anti-oxidant preparation called "emergen-c" last week, once daily.  It has C, B1, B2, B3, B6, Folic acid">i, B12,etc..and 6 minerals, plus Alpha-Lipoic acid.  Also began taking Vit. D3, and Kyolic garlic.  Wow!  I feel great!

Improvement in diet and following the abxi protocol has become easier than ever to stick with. 

Good things:  Spasticity has improved dramatically!  Last night I did not need my 25mg Trazadone for sleep!  I am playing the piano more often-fingers more flexible/pliable.  The unreal feeling has decreased.  Have successfully tapered Zoloft down to 100 mg/day--for over 2 months now!  I have more stamina now to stand/cook in the kitchen.  As the spasticity decreases, my gait gradually improves.  Never quite got to the cane stage, but I lurch a bit, especially after sitting for too long.

Best of Health in 2006

May each of you have some sense of improvement in your well being may it be even ever so slight..One's health is truly one's life and breath .. struggling may not be good yet to get to where you want to be in life does have it's difficult moments of time for each and every human being..Take care all and thank you for all that you have given of yourselfs here to help others..


I have been on INHi for three weeks now the beginning I felt TERRIBLE with a capital T.  Then I started the third week and started to get a lot of neurological stuff going on.  SO NOT FUN!!!  Anxiety, foggy brain, coordination problems, concentration problems, not sleeping well, etc... So I called Dr. Powell and he said that I needed to back off the INH and "clean up" the endotoxini load.  Well the last three days I have laid off the INH and I thought I was going to die yesterday.  Okay maybe that is a little dramatic, but no really I felt like I was going to die.  I feel better on the antibiotcs than off, but feel terrible on the antibioticsi as well.  I have done everything under the sun and to be honest I don't think there is anything I can do, but suffer it out.  Does anyone know if getting on anxiety medication will help me with the anxiety????  I think for the most part I could tough this out, but the neuro stuff is WAY TOO MUCH!!!  It's funny I am also finding that old wound sites that I have had beforehand are starting to hurt.   Years and years ago I worked for Albertson's and I used to work in the "milk box" a lot and I got a mild case of carpal tunnel in my left hand it hasn't hurt in years and all of a sudden it's been hurting like crazy.  I also have been getting really sick to my stomache everytime I eat it's like I feel worse.  Does this ever lessen or get better because I don't know if I can do this much anymore if it's this severe (neuro stuff)?  I keep trying to look forward and remember that eventually I am going to get better, but I feel like I am drowning.  You know you try to prepare yourself for the worst case scenario and I definitely was not prepared for feeling this bad.  Anyone have any encouragement it would be GLADLY accepted and appreciated!!  God bless...

Pulsing Flagyl

After almost two months on Flagyli, I'm finally going to take a break for two weeks, per the protocol. Hopefully, this will let me feel a bit better for a while. It's been mostly aches and sniffles here, but that's getting old :(

Meanwhile, I'm still improving daily, a little at a time. My typing ability is much better than even a week ago. Also, I'm now taking NACi twice daily, for those keeping track.

Now it begins . . . perhaps!

My CFSi Dr. is starting me with a serologyi test for CPni -- IgGi and IgM -- and will be getting backup from Dr. Stratton as needed. I really appreciate the two Drs. stepping up like this -- what I've read here and experienced over the past 18 mos tells me they're unusual.

 Dr. S suggested starting with serologyi. I suppose if it comes back elevated, then it's an easy sell to start the protocol. So, if it does come back elevated, it (treatment) begins. I kind of hope that CPn serology comes back positive. Hopefully the beginning of the end for this bug and its sequelae.

 If not, well, I'll just take the next step, which will be deciding on a next step, I suppose. My story with CFS (at least that's what I think it is) has only been a year and a half -- nothing to most of you, but plenty for me!

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