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A Quicky

I didn't think I would update this treatment blog so quickly--but I am excited to be able to! On Jan. 6th Jim started the doxyi and had minor reactions (quick fatigue, sinuses more congested-really minor). He also noticed strange effects from upping his NACi-Joint pain, movement in sinuses, etc.

By the end of his first two weeks he said "I feel pretty good". That's a big stretch for my worst case scenerio, don't count your chickens until they're hatched kind a guy. On Jan 20th he took one zithro-Wow.

He had reactions that I honestly did not expect. Brain fog, he cried for no reason, he felt as if someone was trying to shut his eye lids. He had stabbing like eye pain in both eyes, severe neck pain--felt like heck in general. Gluttens for punishment, on Sunday, Jan.22 he took his second zithro. Even worse reaction---all the same symptoms and more. Today he woke with achiness in his shoulders,neck,chest and elbow and knees. These are complaints from someone who does not know specifically what reactions to expext (I've not shared all of the knowledge that you all have shared with me).

update

My hand is weak and clumsy thing today so this will be short. It's been 10 days of no spasticity meds for me. Last night I slept better than I can remember having slept with no spasms at all. None. Mind you, I have had some kind of spasticity med for most of my 15 years of MSi. Starting in 99 I have taken requip at bedtime and for the last 2 years I have tried to get off the stuff but the spasms were so bad I've not been able to. I CAN'T TELL YOU HOW SIGNIFICANT IT IS TO NOT NEED THIS. IT IS A BIG BIG DEAL.
I am doing this for the newbies so they can see someone can have something after 4 months of not being sure. I also wanted to update so people can see I am still doing well, it was not a flash in the pan and a fluke of a day or two that went away and I quietly disappeared not saying about how I went back on the med. Nope. I do not need it and I feel better now two weeks after finishing flagyl 2 than I have in a long time.

The INH "Pink's"

Since I posted on the first couple days of herx from INHi, I have to say that today, only 6 days of 1/2 tablet, I had more energy and less brain fog than I've had for a while! I'm hesitant to say too much, since I know these spurts of energy can be short lived, but I actually found myself singing in the shower, with energy after shopping, eagerly reading and posting on the site here, having an intelligent conversation with my son. It's da bomb!

Stay tuned, I may crash tomorrow, but this day was sweet! 

Backsliding?

I ended up on the floor twice in the last 3 days, because my legs gave out quickly. Had to have the paramedics pick me up and put me back in my chair. Being disabled really sucks.

I've been seeing some backsliding on my recovery, not just in my legs but my hand too, so I'm back on the Flagyli again. Some good news is that the azithromycin I'll be using to replace the roxithromycin is now available as a generic, further cutting my med bills. That'll help quite a bit.

My power chair, Elspeth, is in the shop, getting a cool new seat. I'll get her back on Monday - till then, I'm driving a really cheesy loaner chair. It's nasty, uncomfortable, jerky, and has VERY limited battery capacity. I want Elspeth back.

The INH Blues

I haven't posted for a bit, and had a report all prepared of how I felt I'd turned a corner in the last couple months. Tonight, though, I'm "singin' the INHi blues..." having just hit day 3 of adding a half of a 300mg tab each day. I'm amazed that after a year on the protocol and 7 or 8 tinidazole pulses, I have such big inflammatory reactions to adding this more potent med. But it also makes it clear that there are tissues which have not been reached as well by my continuing doxyi/zithi/naci/tini combo, hence why my progress has been gradual, although steady.

 Some good news too. I just got back from a business trip overseas which I had also done in September '05. I clearly was doing better now than in September: less fatigue, less brain fog, more resiliency from travel, quicker adjustment to jet lag and time change. This prior to starting the INH, so I know it was the accumulated result of the doxy/zith/nac/tini combo.

Starting Stratton Protocol

I am going to pick up Azithromycin, which I am to take 3x week for the next month. If the results are in any way remarkable, I'll remark about them.

I hope this works -- even a high titre for IgGi doesn't prove I have a chronic CPni infection, and I'd love to know. Even better, I'd like to get better.

Ron 

KK2's Protocol Update

Just a quick update with a bit of a nuisance.  It is nearly 3 mos. since beginning the Wheldon protocol[in which the msi sxi have shown steady improvement].  Nothing different in my meds or supplementsi, 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


The symptoms always hit on the 4th day of increasing my abxi. 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 pcri testing to get a starting point before zithromax .I hope to add it by the end of the month.

lee

 

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.

Rica

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.

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