KK2's Protocol Update

Submitted by kitkat2 on Tue, 2006-01-17 22:34

Just a quick update with a bit of a nuisance.  It is nearly 3 mos. since beginning the Wheldon protocol[in which the ms sx have shown steady improvement].  Nothing different in my meds or supplements, yet I have noticed a striking increase in the spasticity of only my left[the weak one] leg--actually it is a weird buzzing in my left great toe coupled with a grabbing sort of spasm in the left leg.My left quads and hamstrings are unusually sensitive/touchy.  Kind of like it would feel good to stretch them, but when I do they recoil in spasm.  Nothing more than a nuisance I suppose, but it is quite annoying. Anyone else experience this? KK2   Oh, and I have not even done a Tinidazole pulse yet!  Surprised

last night

Submitted by lee on Tue, 2006-01-17 07:38

The symptoms always hit on the 4th day of increasing my abx. I had disturbed sleep and night sweat with increased symptoms. I found a new juice v8 splash which is very good . It is high in c e and a. I drink a huge glass with extra c at 2 am and woke up not too bad. I am on minocin everyday now with 4 days to up the last 100 and will go to my gp for blood pcr testing to get a starting point before zithromax .I hope to add it by the end of the month.lee 

Maybe not Olympic material

Submitted by katman on Mon, 2006-01-16 14:42

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.RicaIgnorance is voluntary bad luck.   Lauritz S.  A True VikingIf you come to a fork in the road, take it.  Yogi Barra 

Baby steps

Submitted by mswillow on Sun, 2006-01-15 20:04

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 Flagyl 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 CPn 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.

Submitted by LivingOnTheFence on Sat, 2006-01-14 20:30

Had been lurking on This is MS 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 Doxy 200 daily and Azithromax 3x/wk, along with the supplements.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 Sx was never that severe during my first MS attack.  It is very distressing. 

MRI coming

Submitted by katman on Fri, 2006-01-13 10:18

There will be a new kid on the block soon.  I asked my usual question- "Do you have any friends, relatives, or enemies with MS"?  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 cpn 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

Submitted by lee on Fri, 2006-01-13 07:36

My story started in feb 2003. I was healthy or so I thought until then. I did have little signs, IBS 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 antibiotics. 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 pcr and tested positve for m. pneumonia and m. hominis (low titres) and cpn igg 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 ,nac 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 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

Submitted by mrhodes40 on Wed, 2006-01-11 23:54

Inquiring minds want to know, thank you for asking so here's the scoop:
Flagyl 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 supplements. 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

Submitted by mswillow on Wed, 2006-01-11 23:17

My all-body aches seem to be subsiding. Looks like the NAC really has been helping make the EBs of CPn burst prematurely. I may be able to re-start taking Flagyl 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

Submitted by Sojourner on Sat, 2006-01-07 13:56

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 MS 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 abx 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.