Another new adventure - Natgas's antibiotic log

Tell us what you are using to treat your MS-- and how you are doing.

Another new adventure - Natgas's antibiotic log

Postby natgas » Sun Aug 21, 2005 1:49 pm

I've been taking Lipitor since August 4th. It has definitely helped, as my mind is not as clouding as it has been lately. I actually can remember what happened a hour or two ago, that's a plus.

I finally got all the antibiotics together. Couple of them was no problem but the Roithromycin is not FDA approved as of yet in the states. So I went though a friend of a friend in Europe to acquire it. It arrived on Tuesday and I started on the ABX treatment this past Wednesday, August 17th.

So far so good w/ the ABX, no SX's so far, things are pretty much as usual. It will be a couple weeks yet before I start w/ the flagg (Metronidazole). One thing this morning, it seems that that the spasticity has returned. It's been some what mild for the past 2 weeks or so . Hope this is a change for the better but I don't believe it has anything to do with getting better or the ABX, just the MS acting up.

The treatment that I'm followind is the same one as Anecdote's or her husband's David Wheldon's which can be found @ http://www.davidwheldon.co.uk/ms-treatment.html

I'll keep you updated.
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Postby LifeontheIce » Sun Aug 21, 2005 3:49 pm

Roy, take 100 mg of vitamin B1 twice a day. It eliminated painful spasms when I was taking Lipitor. What the dose of Lipitor?
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Postby natgas » Sun Aug 21, 2005 8:11 pm

Hello Ice

I have been taking 80 mg of Lipitor. I will be talking w/ my local Nero tomorrow about getting my liver enzyme tested.

I've been taking b-12 which seems to help some with the fatigue.

Roy
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Postby LifeontheIce » Mon Aug 22, 2005 6:09 am

Roy, I experienced the same thing with my mind after about two and a half weeks on Lipitor. I actually was able to think a bit. Before I only knew who I was and understood that great injustice happened to me.

Remember to take all the supplements Dr Wheldon recommends. In addition take vitamin B complex 100-200 mg a day (which includes vit B1 I mentioned before).

I believe it is pretty remarkable that your thinking improved.
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Postby natgas » Mon Aug 22, 2005 9:55 am

Hello Ice

It's very unscientific but I have nothing else to contribute it to. I had noticed a clearing of the fog before I started the ABX. This is the clearest that my head has been since January 05.

Now just need the abx to do it's thing.

It's a bit early to break open the champagne but it's on ice.

Roy
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Postby LifeontheIce » Mon Aug 22, 2005 6:37 pm

I am very happy for you, Roy. After such a long time of getting worse it is a welcome difference. I hope you see more impovement soon.

Open a bottle of the root beer, indulge yourself. We wil have champagne later. We will blow up the planet.
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Checking in

Postby natgas » Fri Sep 09, 2005 5:12 pm

Hello folks,

I've been away from the site for the last week or so, trying to get some family members out of Pass Christian, MS. That area was in the center of Kitrina, and was very hard hit. They live about 5 miles from the coast and the storm surge came within 1 mile of thier home. They were very lucky, a lot of folks were not as fortunate.

Not much new to report as far as the treatment goes. I go to Vandy on Tuesday for a LP @ which time we/they are going to take some extra fluid to chk for cpn. I'll post the results when I get them.
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Offically out.

Postby natgas » Tue Sep 13, 2005 9:37 pm

Hello folks

Back from Vandy and dropped out of the Rituxan drug trial today, offically. Had the LP done for the trial and pulled extra fluid and a blood sample to test for cpn to see if its positive or not. I will post when I find out.

Dr. Moses was down w/ food poisoning and we didn't have much time to speak and Dr. Sriram was doing double duty.

Roy
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For what its worth!!

Postby natgas » Wed Sep 14, 2005 5:32 am

Morning folks,

For what its worth. Gave up playing poker around 2 this am and turned in. Got this feeling that was kinda weird and a little bit aggravating.

Laid down after a long day @ Vandy and was about to doze off, got pin and needles in my toes more on one foot then the other. This lasted for a while, thou aggravating it was a welcome sign that things may be moving in the right direction, as I've not had much feeling in that foot for a while.

Now don't break open the champagne, but it’s worth a burger and a beer!!


later
Roy
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Postby Anecdote » Wed Sep 14, 2005 6:56 am

But not at that time of night! I'm surprised you were awake again at 12.32 our time. :wink:
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby natgas » Wed Sep 14, 2005 7:37 am

My wife gets up @ 5:30 and I try to get up w/ her. I'll be taking a nap shortly.
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Postby natgas » Fri Sep 30, 2005 5:36 pm

Hello folks,

Not much new to report. Have slowed down with the Lipitor to 3 times a week instead of daily. Head is not crisp as it once was but its much better than it has been. I can see the daylight at the end of the tunnel.

The fatigue has gotten much better though. I can make it all day now without take several naps throughout the day, that’s a plus in the right direction.

I was trading E-mails w/ kitkat2/Kathy earlier this week and she had mentioned that before she had been DX that her knees use to ache like she had arthritis. For about 2 years before I was DX mine did too, thought this was interesting. Does anybody remember a similar ailment? If so post it here if you would like to share your experience, as we're all our own research team or it seems like it anyway.

One other thing, my wife has allot of the symptoms of MS but the Doc's at Vandy tells us that it’s not MS and that’s she is a mystery. She has decided that she would like to try the abx. Should I start her out w/ half the dose and work her up to the full dose, as always your comments are welcome.


Roy
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Encouragement

Postby kitkat2 » Fri Sep 30, 2005 6:42 pm

Well, Roy, I find that sometimes in this racket, no news is good news!
Every obscure tidbit of info in these blog entries is so very helpful.

Thanks for mentioning the knee thing. I just wanted to specify a bit more about that. About two yrs before my ms dx, I took a short trip to Rome with my sister--wonderful place-

Anyway, I had been experiencing sudden severe knee swelling and pain for a few months on and off. I never had issues before that.
I developed one of my frequent sinus infections and got a Rx for Ceftin just before heading to Rome.

We did much walking, knees were painful, also noticed painful, swollen feet(!?) I was fairly fit back then, it was not weight related. I noticed about 5 days into the Ceftin that the knee pain was gone for the most part, and the swelling gradually subsided.

Of course, over time it returned again and again--each time a bit less severe. I am sort of loose jointed and used to enjoy sitting on bent knees while I reading, etc, but could no longer do that without severe pain.

I should have been more diligent with my doc back then, but I resorted to treating it to several 10-day courses of various antibiotics[for sinus] over that following year. Probably never in the amount of time/dose required.

We detectives rarely get to rest. I still am always trying to piece this whole crazy thing together.

Cheers to all the gum-shoes!

Kitkat2 8)
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Postby pinda » Sat Oct 01, 2005 11:26 am

I also started with one swollen knee, burning pain, and difficulty walking with that leg. Checked for blood clot etc. and no explanation. Whole leg and foot became swollen. No explanation from Dr. Checked for stonosis with CT scan. Luckily not, that specialist sent me to Neuro. Both legs eventually had the same thing and now swelling around knees mostly gone, feet still swell a little sometimes, burning only occasionally but not as bad, walking still not good, and balance off plus other things. Neuro says swelling not part of MS. Says in central nervous system but not conclusive for MS. MRI's do not show enough and spinal clear. I'm slowly progressing and he does not think this will just take off and totally disable me. Some times I feel it is taking off then things get a little better. What I call my NEW NORMAL. See him next week for 6 month check. Will try to get some answers, been over 2 years now. Have not seen many others with this swelling and burning knee and leg symptom. Seems to be part of the parcel :) Linda
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Postby mrhodes40 » Sat Oct 01, 2005 12:07 pm

Hi I had knee swelling also. It was decided I had "seronegative arthritis" which means I have arthritis but rather than a positive blood test, it looks negative. I stayed seronegative for 7 years. I then converted to regualr rheumatoid, with all the expected blood work. All my joints hurt, not just knees, though my knees were worst in the beginning. Now my feet hurt and my shoulders, hands...pretty much everything.
Interestingly, RA is well establised as helped by minocycline. IT's easy to get mino prescribed for that, though not other abx along with. The theory is that mino is antiinflammatory and that is it's mode of action.

I'm on doxy 100 twice a day, and starting yesterday azith 250 3 times a week . We plan to have me start flagyl in one or two months depending on how I do with the current regimen. SO far, my joints hurt worse, but it is not unbearable.

BLessings
Marie
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