THE VOICE OF MANY!

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Postby OddDuck » Sat Oct 09, 2004 3:58 am

Well said, Finn.

Hence that is probably why Dr. Sriram himself isn't prescribing antibiotics off-label for his own patients to try. (As I wondered about aloud earlier.)

Deb
User avatar
OddDuck
Contributing Author
 
Posts: 1040
Joined: Sat Jun 19, 2004 3:00 pm
Location: Tennessee

Advertisement

Postby Byron » Sat Oct 09, 2004 10:23 am

Finn, I find this to be a fascinating summary of my beliefs about antibiotics. Pretty much everything that you have said about what the attitudes I have to antibiotics is completely false. Specifically, I am very concerned about taking even a medicine as safe as Minocycline. I suggest you actually read what I have said; I see no reason to repeat it for now. I do not know you; for now I will assume that you are just mistaken about what I have said, hence my recommendation to re-read. It is quite possible that you are deliberately lying. I don't know yet and will not know till you respond, so I am perhaps more polite than I should be with you.

When my girlfriend first started taking Minocycline, it was my hope that it would serve to be neuroprotective. The results were both surprising and delightful. Some people in the medical industry, and some people who also claim to suffer from MS find the fact that she seems to be cured to be an insulting. I cannot help that. Whether you find this rude, or whether you find this good doesn't matter.

The bottom line is, my life is now fine. I now have a healthy girlfriend who is doing quite well. My only reason for still being on this board is that I want to give something back. I benefitted personally, and I am trying to pay back so that others can also be helped.

If you are willing to work with me to figure out how this is useful and can be of benefit to other people, that's excellent. If you can't or won't that's OK. If you want to be obstructive to my goals, I won't care: my only response to you will be to correct your lies. You mean nothing to me.

Unfortunately, your scientific points are also incorrect:

You initially quoted Dr. Sriram's study as an example of how antibiotics don't help. Actually, the antibiotics did help. The results of his study that were quoted were better than Avonex in a significant measure: that of parenchymal brain fraction. When this was pointed out to you, you decided to be insulted.

You are also incorrect in your statement that antibiotics cannot be used as a standard therapy for MS. They do work in many cases and therefore they should be tried as standard therapy. If you want to argue that they don't work in all cases, then basically that argument can be used against any medicine: no medicine works in all cases. What you have basically said is that people should not take medicines.

There are specific risks associated with taking antibiotics as a therapy for MS, and I keep asking people who have tried antibiotics to share their experience because we need a much better understanding of what those risks are. We have a small amount of very promising data. We need much more data. Hopefully, it will continue to be as promising.
User avatar
Byron
Family Member
 
Posts: 26
Joined: Tue Jul 06, 2004 3:00 pm

Postby Byron » Sat Oct 09, 2004 10:31 am

Deb, I suggest you take a look at the following page:

http://www.davidwheldon.co.uk/ms_treatment.html

It's contains a description of a doctor who did prescribe antibiotics for MS and where it did work.

Good luck!
User avatar
Byron
Family Member
 
Posts: 26
Joined: Tue Jul 06, 2004 3:00 pm

Postby finn » Sat Oct 09, 2004 10:44 am

Sorry, time to leave the board.

-finn
Last edited by finn on Sun Aug 28, 2005 1:49 pm, edited 2 times in total.
User avatar
finn
Contributing Author
 
Posts: 289
Joined: Wed Mar 17, 2004 4:00 pm
Location: Finland

Postby mscaregiver » Sat Oct 09, 2004 10:58 am

Image
User avatar
mscaregiver
Volunteer Moderator
 
Posts: 148
Joined: Sat Jun 05, 2004 3:00 pm

Postby OddDuck » Sat Oct 09, 2004 11:31 am

Hi, Byron,

Yea..........I really can't say personally one way or the other whether antibiotics work for MS or not. My position is usually one of just being questioning. Hey........I'm all for anybody taking whatever works for them, ya know? The only personal opinion you may see me take in a more decisive manner is that MS itself may actually encompass more than one "type" of disease (I refer a lot to Dr. Claudia Lucchinetti's ongoing research.) Hence, also why it may be entirely possible that antibiotic treatment may indeed work for many! I myself have a drug treatment option that I would love to see investigated and put into clinical trial, too.

And that's the problem that tends to show itself time and again. There may be, and probably ARE, many different MS therapy options, such as LDN, minocycline, etc., that are basically being ignored and/or patients have a lot of trouble getting prescriptions for. That principle, to me, is unfair in and of itself (i.e. denying someone the option of trying something simply because it may not be popular or backed by the pharma companies).

The thing is, though, too..........and again, this is one of my "wondering aloud" things............Chlamydia pneumoniae and minocycline seem to be lumped together quite often, which I'm not certain that they should be.

If Chlamydia is found to be an aggravation in MS, the treatment may not always need to be antibiotic treatment. If you can stop the overload influx of CA2 (calcium) into a neuron, that also helps to prevent disability and damage to myelin in MS. The chlamydia pathogen is coincidentally also stopped from causing further damage, if you can control the influx of CA2. There are other drugs besides antibiotics that can do that.

Now, as far as minocycline goes, I found that one of the major things minocycline does that helps MS is not one of stopping bacterial infection, but is its ability for decreasing the activation of caspase 3. Caspase 3 is part of the physiological chain reaction that activates apoptosis, i.e. cell death (and is not directly connected to its antibiotic efficacy). If you can regulate the activation of caspase 3, it helps to control cell death (which as we all know, in MS, it is desirable to stop, slow down, or at least regulate apoptosis).

So....the one does not always need to be linked with the other, but it can be and often is.

Dr. Sriram's research is mainly regarding chlamydia as a possible cause of MS, not regarding the efficacy of minocycline necessarily. Minocycline as a drug therapy is also being looked at by itself, not necessarily connected with the fact of whether you have the chlamydia pathogen.

Bottom line? Is it possible then that minocycline (and/or other antibiotics) might be effective adjuncts for MS therapy? Certainly! And as we all know, especially the folks who are supportive of LDN, how difficult it is to get it proven, so patients can at least have the option of trying it!?

I support the freedom of patients to try viable alternative options of treatment, especially when it is being done in an informed manner, and is under the supervision of medical personnel. Now to get the medical doctors to get on board with us! :wink:

Deb

EDIT: Wait a minute! I said above that the "only" decisive personal opinion you may see me take, blah blah!!! Geez, who am I kidding!? (Especially for those of you who know me. hehehe.......... :lol: )

SECOND EDIT: Sorry, I changed the word "virus" to "pathogen". I misspoke by using the term virus. Apologies.
Last edited by OddDuck on Sat Oct 09, 2004 12:43 pm, edited 2 times in total.
User avatar
OddDuck
Contributing Author
 
Posts: 1040
Joined: Sat Jun 19, 2004 3:00 pm
Location: Tennessee

Postby Felly » Sat Oct 09, 2004 11:32 am

[quote="Byron"]

Some people in the medical industry, and some people who also claim to suffer from MS find the fact that she seems to be cured to be an insulting. I cannot help that. Whether you find this rude, or whether you find this good doesn't matter. [/qoute]

I really didn't have much intention of coming back on to this board because of you but really this last comment is just going too far. What the hell do you mean 'people who also claim to suffer from MS'.

For the record I agree completely with Finn and as far as I can see he has got your quite perfectly summarised. Your comments to Karrie were bullying and obnoxious. You don't want people to express any opinion that differs from your own and I am disgusted that the comments you have made to Karrie and Finn have been tolerated.

Oh yes, I will add I have been taking minocycline for 13 days now and guess what NO SIDE AFFECTS WHATSOEVER. Nothing. Nothing has changed, nothing has got worse, nothing has got better. If it had got worse I would put this down to an allergic reaction, if it had got better I would put it down to placebo not some divine intervention, which sorry to say minocycline is NOT going to do. What I wouldn't immediatly assume is that I was so chock full bacteria and this was causing my MS that I was cured. GET REAL.

I hope for your girlfiends sake you are right because being with you must be bad enough never mind having MS.

Ok, I don't care what you want to say in reply because I'm not going to respond again. Because of people like you I am not going to be involved with this board, which is a real shame because Byron - I do have MS, I also have a medical background and I also care about discussion.

Felly
User avatar
Felly
Family Member
 
Posts: 84
Joined: Mon May 10, 2004 3:00 pm
Location: UK

Postby OddDuck » Sat Oct 09, 2004 11:51 am

(Ok.....imagine this: An OddDuck is chaining a runaway Felly to this website, all the while begging "You aren't going anywhere, Felly!! Right?")

:cry: :?:

Deb

P.S. We know what an Odd Duck may look like, but what the heck is a Felly? :wink:
User avatar
OddDuck
Contributing Author
 
Posts: 1040
Joined: Sat Jun 19, 2004 3:00 pm
Location: Tennessee

Postby Arron » Sat Oct 09, 2004 12:17 pm

People,

This rudeness and anger is absolutely unacceptable on this board, but I cannot police each of your personalities. If you disagree, that is fine, but do so in a respectful manner. There is a clear post called "Rules of the Board" that explains the policy of what we do in these situations-- (for those of you old-timers, you remember we had a similar issue before...). This board, unlike most others, actually has a democratic component in terms of moderating it-- take advantage of it!

I can't be all things to all people, but I will say this-- Byron, you've managed to upset not one, but three of our members (two of them our longest standing), so change your tone immediately or I will have to ask you to leave.

And thank you Philip-- You are absolutely right, this issue is a neat one but it is certainly not worth making it a crucible.

The summary on antibiotics thus far is one line: It shows promise, it's readily available, it has potentially serious side effects, and it requires TESTING. Unlike most other experimental therapies, whether that testing is done by you or by a clinic is your choice, and choices are what we are all about here. However, with that easy accessibility comes greater responsibility and no one can claim this is a cure or safe for all MS'ers because

a) it is clearly not all things to all people
b) impressionable people may run with that idea and get themselves disappointed
c) worse, people might get themselvese seriously hurt. Not being able to breathe is not a symptom of a Herxheimer reaction

A lot of great information is being shared; let's get back to it in a civilized manner. And if you still have issues, refer to the Rules of the Board and follow procedures there.
User avatar
Arron
Volunteer Moderator
 
Posts: 892
Joined: Sun Feb 01, 2004 4:00 pm
Location: California, USA

Postby wilson » Sun Oct 10, 2004 6:24 am

This post is buried deep within a pile of angry replies but I am going ahead anyway.

It has been six weeks since I have been on Minocycline. As I have said before, I had a slight reaction the first week. I suffered from chills and flu like symptoms. Plus, I felt slightly light headed. All these reactions dissipated after the second/third week.

For the last three weeks, I have been dealing with some sort of allergic reaction. I don't know if it is seasonal allergies or the Minocycline. The side effects have been trouble breathing/sleeping at night to severe nasal congestion. (it is interesting to note that Aaron stated that "worse, people might get themselves seriously hurt. Not being able to breathe is not a symptom of a Herxheimer reaction ")
I have trouble breathing!

I talked to my GP about this and he stated it is not because of the antibiotic. He ordered a Sleep Apnea test. (I am still waiting for the results of that.) My GP is a good guy but I think all this is over his head.

I cannot function on 2-3 hours a sleep a night. Sometimes, I wake up gasping for air, as though I am being smothered. It is VERY unnerving. I also have, at times, very bad nasal congestion. Like I said, I don't know if its allergies, antibiotic reaction, or a combination of both.

What to do, what to do.
User avatar
wilson
Family Member
 
Posts: 67
Joined: Sat Mar 20, 2004 4:00 pm

Postby Felly » Sun Oct 10, 2004 7:30 am

Hi Wilson,

Trouble breathing could be an allergic reaction to minocycline, it is down as a potential allergic reaction in my formulary. But who knows unless you get it checked out.

Even if it turns out not to be, if I were you I would discontinue until I know for definite that it is not the minocycline. Recognition of an early reaction is extremely important. Please don't ignore it.

If the breathing gets better after a few days of stopping the minocycline then you may have your answer. You could then try again at a lower dose. But only after you have received some good medical attention. Hope people are remembering that after 6 months on minocycline you ought to be checked every three months in case of hepatotoxicity, autoimmune induced hepatitis, SLE* etc etc.

I titrated from 100mg x 1 a day for the first four days to 100 mg x 2 a day and haven't had any problems thus far.

Hope it gets better soon.

Felly

*I forgot to add that I have also been checked for SLE - lupus erythematosus, prior to taking minocycline and would advise anyone considering treatment to do the same as this is one condition that can be triggered by minocycline usually a month or so in to treatment. Antibiotics are not harmless
User avatar
Felly
Family Member
 
Posts: 84
Joined: Mon May 10, 2004 3:00 pm
Location: UK

Postby SarahLonglands » Sun Oct 10, 2004 11:14 am

This is my last posting apart from regular updates on my thread in the 'Regimens' section, mainly due to pressure of work and the need to spend 'quality time' with one's husband in the evening!

I have spoken today to a clinical microbiologist of some twenty five years standing who has never seen an allergic reaction to a tetracycline, although it must be said, he has never prescribed minocycline, preferring the rather gentler doxycycline.

Which is not to say, my words now, that there has been no allergic reaction to minocycline, of course, but it is unlikely after three or more weeks. Wilson's own GP also appears to think the antibiotics are not the cause.

It is worth remembering Philip's signature here: "All substances are poisons; there are none which is not a poison. The right dose differentiates a poison from the remedy."

Sarah
SarahLonglands
Family Elder
 
Posts: 2111
Joined: Thu Jun 17, 2004 3:00 pm
Location: Bedfordshire UK

Postby Felly » Sun Oct 10, 2004 12:26 pm

Antedote,

You don't know and I don't know what is causing the breathing difficulties.

Wilson's GP is in the best position to know but that doesn't mean he does know. I would excercise caution until the test results come back.

I do know that minocycline can cause reactions LONG after it is first taken. It is not as unlikely as you beleive that three weeks after taking it you can have a reaction. And if we want to qoute medical sources then this one is from my brother who is a GP.

If any one wants to see what the potential affects of minocycline (as in allergic reactions) can be in term of breathing problems have a look at these http://archinte.ama-assn.org/cgi/search ... submit.y=9

Excuse English - I'm writing this in a hurry

Felly
User avatar
Felly
Family Member
 
Posts: 84
Joined: Mon May 10, 2004 3:00 pm
Location: UK

Postby wilson » Sun Oct 10, 2004 5:36 pm

Thank you Felly, thank you Sarah!

Your feedback has been incredible.

I have decided to stop taking Minocycline. I am temporarily postponing taking the antibiotic until I see an MD about allergies.(Allergist?) I am going to take these postings on my visit.

As soon as I find out the what and why I am having "allergy" reactions, I will post the results here.
User avatar
wilson
Family Member
 
Posts: 67
Joined: Sat Mar 20, 2004 4:00 pm

Postby Byron » Mon Oct 11, 2004 8:29 am

Arron,

I have nothing to lose by leaving. I was misquoted, and deliberately. I suggest you read all my cautions about taking Minocycline and antibiotics and then tell me if it is anywhere close to proper to claim that I think that "they can be like popping candy." This is not an academic exercise. Don't ignore this. I really think you need to do it. I am the one who has been unfairly maligned and misquoted, and I have been trying to work through it.

If a bunch of nutcases decide to get upset over an attempt to share scentific information and call it "bullying", then that isn't my problem. It is not your place to suggest that I change my attitude. It is certainly your place to decide whether or not I can post on this board. I will check back here in a few days; if my account is deleted, that removes me from any further obligation. If not, I shall continue posting as I think is proper. Either works for me. Life is too pleasant for me at this point to really be bothered by people of ill-people.

I do have one request: if you decide to terminate my account, I also request that you delete every posting I have made on your board. All of them. You have no right to any information that I put out if you decide I am not worth listening to.

Best Regards,
Byron.
User avatar
Byron
Family Member
 
Posts: 26
Joined: Tue Jul 06, 2004 3:00 pm

PreviousNext

Return to General Discussion

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service