Stopping minocyclin (maybe temporarily?)

A forum for the discussion of antibiotics as a potential therapy for MS

Stopping minocyclin (maybe temporarily?)

Postby Loriyas » Wed Aug 29, 2007 8:37 am

I don't know whether to be disappointed or not-I had a follow-up visit with my neuro who prescribed minocycline for me last month. He wants me to finish what I have then stop and see how I feel. I am to continue with the other supplements he gave me, including NAC. He said he has several patients on minocycline long term so we can go back to it later if we want. But it doesn't appear he is suggesting the antibiotic protocol. I didn't press him about it this time as he wants me to come back in 6 weeks to see how I am doing. I can see about it then.

I told him I wanted to give LDN a try and he was very agreeable to that and wrote a prescription for it. So now I'll be going down that path.

But I definitely feel better on the minocycline and am thinking there is something to this antibiotic theory. At least I will be continuing the NAC for the time being.

Any thoughts?

Lori
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Postby SarahLonglands » Wed Aug 29, 2007 9:57 am

Well, obviously *I* think there is something in "this antibiotic theory" because why otherwise would my disease have started to recede so soon after starting and never returned? In my case you can't say that MS is a relapsing remitting disease: it was inexorably progressive.

Your neuro, though, sounds as though he is just dabbling with the neuroprotective qualities of minocycline. At least he is agreeable to LDN: that's something!

I should just go along with him for now, but give him copies of the papers I sent you.

Sarah
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 Loriyas » Wed Aug 29, 2007 10:20 am

Hi Sarah,
I think that anitbiotics show a lot of promise. I can tell just by the way I feel, in addition to how yourself and others have shown such improvement.

I think I will just go along with his plan for now and then push harder when I go back for a follow up. I will give him the papers you sent me then. I didn't give them to him yesterday because he definitely wants me to see how I feel after going off the minocycline. So I think it will be better to give the papers to him when I go back and tell him I want to go back on them. He did, however, want me to stay on the NAC. That's a good thing isn't it?

Thank you for your help,
Lori
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Postby SarahLonglands » Thu Aug 30, 2007 2:22 am

I think NAC is always a good thing. I take it every day!
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 Minai » Fri Aug 31, 2007 3:27 pm

Hi Lori,

How much LDN is your neuro starting you out on?

Just curious :wink:

--Minai
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Postby Loriyas » Thu Sep 13, 2007 10:17 am

Minai,
I am so sorry for not replying to you earlier. I just saw your post. I don't know how I missed it!

My neuro started me on LDN at the recommended dose of 4 mg. I am having very little difficulty tolerating it. Some night sweats once in a while (but don't know if I can actually attribute those to the LDN!) I am happy thus far although I can't say what it is doing for me. I do know it isn't doing anything bad to me!


I'd like to also update since having to stop minocycline due to neuro's request..

-Dizzyness/brain fog is returning-slowly but still happening.
-tremor in hand has returned. It was gone while on the minocycline.


Everything else remains the same at this point. Balance, walking is good.
I see the neuro in a couple more weeks so we'll see what else occurs before then!

Lori
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Postby daisy » Thu Sep 13, 2007 11:08 am

Lori - I'd call your neuro and tell him about the sudden onset brain fog and the hand right away! I'd tell him you don't want to wait weeks before restarting mino. You just might get a quick refill. Doctors usually respond quickly to declining and complaining patients. Just a thought...
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Postby Loriyas » Thu Sep 13, 2007 12:57 pm

Thanks Daisy
I'm planning to do just that very soon. I want to be able to see if anything else crops up (of course without delaying too long!) so that it will be more convincing. Although I don't think he will need much convincing, he's been very receptive thus far, at least to the minocycline. But I want to convince him to prescribe the entire protocol for me. So I feel I can wait just a little longer. If not, I'll call him if it becomes a bigger problem.

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Postby SarahLonglands » Thu Sep 13, 2007 1:40 pm

Lori, I agree with Daisy - try to get the new script as soon as possible. Its your life that is being played with.

Sarah :?
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 Dovechick » Thu Sep 13, 2007 11:41 pm

Lori, I agree with Sarah and Daisy, don't delay, the longer you leave it the bigger the bacterial load. What have you got to loose... The ABX protocol may make you feel a bit worse in the short term, which is why you must play it carefully in the beginning, but in the end it will make the difference between an active life and a difficult one.
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Postby Loriyas » Fri Sep 14, 2007 6:06 am

I've got a call into the doctor's office. He's out of town so when he calls in the nurse will get back to me. I developed a UTI and started Levoquin this morning. I don't know if that particular antibiotic will help with symptons other than the UTI but it is an antibiotic that has been started. It has always worked well for UTIs in the past. It would be a bonus for it to work for other symptoms!
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Postby Dovechick » Fri Sep 14, 2007 6:50 am

Ella took antibiotics at the beginning of a relapse for UTI. During that time her symptoms abated slightly which is what alerted me the the use of antibiotics as a possible treatment for MS.
As soon as she stopped the ABX the relapse proceeded unabated.
So in hindsight I saw the UTI as a trigger for the immune system and the antibiotics removed the need for the immune system to be so gun ho, also the antibiotics might have had an immuno-modulatory effect. However once the abx stopped the immune system continued its destructive course trying to clear up the Cpn(?) or other pathogens.
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Postby Loriyas » Fri Sep 14, 2007 7:47 am

Good to know-this will give me time on antibiotics while waiting for the dr to call.

I had a similar epiphany with anitibiotics and MS. When I had my surgeries last year I was put on antibiotics. At the time that I was going through the surgeries I was grateful that my MS "behaved" itself and didn't give me any flares, exacerbations etc. Later, I experienced my first relaspse in 5 years and had difficulty getting it under control (nystagmus, optical issues of focusing and double vision). I can trace back now the beginning of this relapse with the ending of the antibiotics. I didn't realize it then but in hindsight it is perfectly clear that there was a correlation. Once I started minocycline the exacerbation resolved, for the most part. Now without the minocycline I think it may be starting again-ever so slowly like the last time. So I need no more convincing that this is the way to go. I guess I should be glad for this UTI!!!

Lori
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Postby Dovechick » Fri Sep 14, 2007 8:32 am

It comes to something does it not when we can be glad of a UTI... :?
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Postby Minai » Sat Sep 15, 2007 6:45 pm

Hi Lori,

Loriyas wrote:I am so sorry for not replying to you earlier. I just saw your post. I don't know how I missed it!


Well, no wonder you didn't see it, given all you've been dealing with! I just did the same with your reply, dealing with my shingles :?

You may be glad for the UTI, but it is certainly scary, nonetheless. I hope the Levoquin is working for you! What you and Michele have both noted about your relapses and previous UTIs, treated with ABX, are most remarkable observations!

Loriyas wrote:My neuro started me on LDN at the recommended dose of 4 mg. I am having very little difficulty tolerating it. Some night sweats once in a while (but don't know if I can actually attribute those to the LDN!) I am happy thus far although I can't say what it is doing for me. I do know it isn't doing anything bad to me!


Am glad that you seem to be tolerating the LDN so well, While not a cure, it is an immuno-enhancer. While ABX are immuno-modulators. I started LDN back in April at 3mg. While it has helped much of my back and shoulder pain, it increased spasticity. So, have never tried increasing it. And, am convinced that it is the reason that I was finally able to tolerate the ABX, after severe pseudo-relapse. Maybe it will help you, too. I hope so!


--Minai

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