ABX -- not really working for me

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

ABX -- not really working for me

Postby ljm » Thu Aug 31, 2006 8:12 pm

I’ve been on ABX regimen for sixteen months. And I’ve got to say, with a lot of regret, that its benefits for me appear to have been limited.

I had a single neurological episode (with no prior symptoms) in January 05 which left me pretty weak and screwed up. Within a few weeks I started taking ABX according to a regimen provided through correspondence with by Dr. C Stratton (minocycline, azithromycine, metronidazole).

In the first six months I had a lot of improvement, followed by another few months of pretty encouraging stability. Then in March I started to have increasing problems with vision and a feeling that I was going downhill. I continued the regimen and then, at a long awaited appointment at the UCSF clinic a month ago I was told I was told that my optic nerves were showing atrophy. That hadn’t been present before and it proved that I was experiencing a real decline, not something subjective.

It was kind of a shock. I've had to re evaluate the ABX theory, at least as it applies to me.

My guess is that that part of my improvement after the initial episode was inevitable, just the typical remitting part of the disease. And I’m pretty sure part of the improvement was due to a supplements and exercise, which I've been pretty fanatical about.

I think that the ABX contributed as well, but I’d put down money that, at least in my case, its because of the neuro-protective and anti-inflammatory action of the tetracyclines – and has nothing to do with CpN. I think that’s why, in my case, the ABX regimen may have helped slow things down but was unable to address the root cause//and halt the disease process.

Its pretty well established that tetracyclines (including, specifically, the minocycline I'd been taking) decrease the production of substances causing inflammation, such as prostaglandins and leukotrienes, while increasing production of interleukin-10, which reduces inflammation.
That’s why they’re fairly routinely prescribed for RA.

And there is growing evidence that tetracyclines (including, specifically, minocycline) protect against neurotoxicity in animal studies and appear to reduce MS lesions according to research being conducted by University of Calgary. I don’t think its being prescribed widely for this capability, but I think that’s going to come soon (or pharmas will develop non-antibiotic versions of tetracyclines).

So, I think that what I was experiencing with ABX was a neuroprotection/anti inflammation action. I realize CpN is, according to the theory, really resilient and cryptic and hard to erradicate etc but I have trouble believing that the $3000+ worth of ABX I have conscientiously taken couldn't even contain its damage, that I started to have optic degeneration despite it all.

While I’m off the CpN theory, in my case, because I actually got worse during its treatment, I’m going to conitinue taking minocyline. From the very beginning, it seemed like my body “liked” the stuff, and that it was making me feel better in a fairly immediate way. I don't think thats imaginary, I think its consistent with a neuro-protective/anti-inflammatory explanation. And as far as I know, minocycline has no significant risk in long term use.

But clearly I’ve got to do more to recover some of the time and ground I’ve lost. And so I've started to take lipitor, which is really what I should have stressed first in this post, since it was more the thing I wanted to comment on.

I’ve been more and more interested in statins, based on research, and based on some posts on this site. And something has definitely happened even with the very small daily dosage I've been on for the last two weeks --- I just hope its not temporary.

Last weekend, for the first time in a couple of months, I went on a long, hard, competitive cycle and I actually saw clearly - without double vision -- through the entire thing, including a long grinding climb up to the coit tower. That is, actually, unfuckingbelievable. That is something I haven't experienced since my initial episode.

My guess is that lipitor had an immediate anti-inflammatory impact like the minocyline....but x10. I realize that controlling inflammation isn’t a cure for MS, but maybe it can keep things steady until I can figure out something else.

I’m thinking that as long as I feel good I should keep at the lowest dose and keep a step=up in reserve in case I get the flu or something. From what I’ve read, the effectiveness of statins seems to continue over long term use (with the usual risks of kidney/liver damage, muscle damage).
User avatar
ljm
Family Elder
 
Posts: 153
Joined: Wed Mar 30, 2005 3:00 pm

Advertisement

optic news

Postby jimmylegs » Thu Aug 31, 2006 8:43 pm

bummer lj. good that you took away some benefit from the antiinflammatory bit. i dont know about eye stuff because as bad as my nutrition was i never had any problem with my optic nerves. what do you take for blood flow to the optic nerve?
jimmylegs
Volunteer Moderator
 
Posts: 9003
Joined: Sat Mar 11, 2006 4:00 pm

Postby dignan » Thu Aug 31, 2006 9:18 pm

ljm, you might just be ahead of your time. I think a lot of us are eager to hear some results from both the lipitor and minocycline trials that are going on right now. Who knows, a year from now, that combo could be getting a lot of attention. I hope your good experiences continue.
User avatar
dignan
Family Elder
 
Posts: 1608
Joined: Wed Aug 11, 2004 3:00 pm

Postby bromley » Fri Sep 01, 2006 3:38 am

ljm,

Many thanks for your honesty about your experience with the abx protocol. The abx thread seems to have gone very quiet and I wonder if others have not had the reported dramatic results of a few. Two on the regime - one PP and one SP - reported improvements in EDSS of 7 to 2. In all honesty I don't believe this and previously questioned whether a neurologist had undertaken the assessment. There must be quite a number on the abx protocol, like yourself, for substantial amounts of time - so I'm surprised that others aren't reporting dramatic results.

I think the minocycline route is sensible and has shown benefits in the small trial that was reported in 2004. It is also being studied for possible neuro-protective benfits. Maybe a statin and minocycline could be a future combo.

I am very short-sighted and had an eye-test the week before last. I mentioned that I had MS and the optician did some additional checks looking for inflammation. He said he couldn't see any and noted that he was looking for signs that neurons were dying off. Thankfully, he couldn't see any such sign but you do have to wonder what this bastard disease is all about. The list of symptoms is a horror show on its own but the thought of loosing your eyesight pushes it to a different level. I did see a presentation about the optic nerve and the good news is that it has some spare capacityif it is damaged.l

All the best

Ian
User avatar
bromley
Family Elder
 
Posts: 1887
Joined: Fri Sep 10, 2004 3:00 pm

Re: ABX -- not really working for me

Postby CureOrBust » Fri Sep 01, 2006 3:43 am

ljm wrote:I’ve been on ABX regimen for sixteen months. And I’ve got to say, with a lot of regret, that its benefits for me appear to have been limited.

Sorry to hear they havnt worked for you. I am still in the "take and see" stage. Have you discussed your progress/regression with Dr Stratton? What did he say?

If I could also ask, while on the regimine, what were your reactions to the metronidazole?

ljm wrote:I’m thinking that as long as I feel good I should keep at the lowest dose and keep a step=up in reserve in case I get the flu or something.

I was on the highest dose of simvastatin (ie 80mg) for quite a while (say 9 months), and when i switched to lipitor, i noticed an immediate difference. So not only do they appear to work in the long term, it may even be possible, that the different statins work slightly differently, or give an option if you become less reactive to one (no research yet). what dose are you on? I have a script for 80mg, but take 60mg as i cant say i notice any less effect; as compared to 80mg. I did take the 80mg for a while, before i cut back, for similar reasons as yours.

I dont know about other people, but I have NOT had the statins stop a relapse after a flu. I take prednisone to stop a relapse. However, i think the statins help me recover / heal much faster. Maybe they reduce the severity, its hard to know with this condition what is "normal". (And also when i am on ABX's, LDN as well as the statins...)

ljm wrote:From what I’ve read, the effectiveness of statins seems to continue over long term use

I have been on them for over 12 mnths, and i still notice a reduction in foot tingling an hour after taking a dose (i split my dose in 2 to 3 over the day). Its encouraging to know that research is finding that not only do they reduce inflamation, but also may reduce BBB permeability.
Gilenya, 80mg Lipitor, Inosine, Minocycline, Suppliments galore.
3 CCSVI treatments, no major noteable benefits thus far.
User avatar
CureOrBust
Family Elder
 
Posts: 2910
Joined: Wed Jul 27, 2005 3:00 pm
Location: Sydney, Australia

Postby SarahLonglands » Fri Sep 01, 2006 4:13 am

Bromley, really! I wasn't going to respond to this but just write to Lizz privately, which I will still do this evening, but have you not thought that maybe the Antibiotics people have gone a bit quiet lately because they have other things to occupy their time, like my painting or Katman's goat rearing, since we are the two people about whom you are commenting. I won't even comment upon your inaccurate remarks about our EDSS scores. Jim's CPn Help site is still very busy, in fact, getting busier by the day.

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.
SarahLonglands
Family Elder
 
Posts: 2107
Joined: Thu Jun 17, 2004 3:00 pm
Location: Bedfordshire UK

Postby bromley » Fri Sep 01, 2006 5:23 am

Sarah,

Just my opinion. But I think it important for those who haven't seen good results from the abx protocol to be heard so that those considering it as a treatment option can have a fuller picture. It might be than Cpn is the cause of MS in a sub-set of sufferers. If that was the case, then those with MS not caused by Cpn will see no benefit.

As ljm noted it has also cost her a lot of money. At least with Tysabri we know what the reduction of annualised relapses were in the trial and the risk of death. With abx, there has been no trial and I do not know if 100 or 1000 patients are on it and what the results are. There will always be a tendency for those who have done well to report, but those who have not done well or have withdrawn from the regime to not report. I imagine that enough people have been on this regime for enough time for some sort of view to be formed on its effectiveness. I would guess that most neurologists would see reductions in EDSS reported by Katman and yourself as near miraculous given that atrophy (loss of axons and neurons etc) is the cause of disability. While abx may be good at killing Cpn, I have never worked out how atrophy can be reversed through abx.

Ian
User avatar
bromley
Family Elder
 
Posts: 1887
Joined: Fri Sep 10, 2004 3:00 pm

Postby ljm » Fri Sep 01, 2006 9:06 am

Look, I really hesitated over the post. I’m grateful to those who are pursuing ABX, I think their experiences are pushing us consider new theories, and its entirely possible that CpN is involved in a subset of MS cases. I’d give a lot to be one of those cases but… my disease progressed while on ABX.

CureO wrote

If I could also ask, while on the regimine, what were your reactions to the metronidazole?


During my first five or six flagyl pulses I had zero reaction except for sleepiness. A couple of people had posted that they didn't experience much with flagyl so I wasn't suprised. Then, unexpectedly, my reactions became intense, distinct and unmistakable. In fact, I would have been a text book case for the ABX theory except…my optic nerves started to die.

CureO wrote

Have you discussed your progress/regression with Dr Stratton? What did he say?


I'll send him a note, he'll likely be on holiday but I can report back on his response.
User avatar
ljm
Family Elder
 
Posts: 153
Joined: Wed Mar 30, 2005 3:00 pm

Postby gibbledygook » Fri Sep 01, 2006 9:20 am

Hi all,

I must admit to sharing doubts about the antibiotics but as there isn't much else I'm going to carry on for the full 3 years. At least the nasty foot burn has gone and my walking is stable but still pretty terrible (as it was before I started the antibiotics). The night spasms have made a bit of a return over the last few months whilst everything else is pretty much unchanged. So on the whole the improvements are not dramatic and I am very envious of those who've had dramatic improvements. I actually about a year ago got a script for Lipitor and the packs are enticingly stacked in the cupboard. I think I might well started taking them now as well although I will need regular liver function tests as it's been having quite a heavy year what with hepatitis and general overindulgence. In fact I'll start taking Lipitor if a new symptom occurs like ljm.

:?
User avatar
gibbledygook
Family Elder
 
Posts: 1414
Joined: Mon Feb 14, 2005 4:00 pm
Location: London

Postby SarahLonglands » Fri Sep 01, 2006 11:26 am

Lizz, do report back about what Stratton says. He might be away for the weekend but he was there earlier this week. As you said, your reactions to flagyl were so copybook for the infection that it must have really thrown you to find you had atrophy of the optic nerves. I would have been devastated, because I rely totally on good eyesight for my painting. When UCSF said your optic nerves were showing atrophy was this active or could it have been old, from before you moved to SF? Anyway, your cycling abilities aft just two weeks on the lowest dose of lipitor were quite spectacular: I tried it for 28 days and saw no improvement whatsoever, so I stopped. For anyone like you who does see improvement, though, it is certainly worth it, so long as you have regular tests to protect your liver and so on.

I said above that I would write to you, but I decided to post again, because I don't like insinuations from certain quarters that Rica and I have been telling untruths about our EDSS numbers. I wish I could have done what you did last weekend, but at the moment I have to be content with a few laps on my bike round the park, but then since I could hardly walk three years ago, this is a vast improvement. I have to rely on David, who did train as a neuropathologist before he changed to microbiology, or my GP to do any assessments because my Cambridge based neurologist has disowned me.

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.
SarahLonglands
Family Elder
 
Posts: 2107
Joined: Thu Jun 17, 2004 3:00 pm
Location: Bedfordshire UK

Postby Lyon » Fri Sep 01, 2006 4:31 pm

oo
Last edited by Lyon on Sat May 07, 2011 8:42 am, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Postby ljm » Fri Sep 01, 2006 6:30 pm

In response to previous. I think the fact that Sarah and others reported improvement on ABX is important data. The puzzle to me is only why their improvement occured -- ie. whether the ABX regimen wiped out a CpN infection or whether it provided neuro-protection/anti-inflammation that allowed recovery. Either method of action could have provided real benefit and the results could indeed have been quite dramatic.

Sarah asked
When UCSF said your optic nerves were showing atrophy was this active or could it have been old, from before you moved to SF?


I phoned my previous MS clinic and got the reports from my earlier opthamologic exams, it didn't appear to have been there before.
User avatar
ljm
Family Elder
 
Posts: 153
Joined: Wed Mar 30, 2005 3:00 pm

Postby gibbledygook » Sat Sep 02, 2006 2:43 am

Could I ask how long ago your opthalmologist examined your optic nerve and declared it fine or rather how far into the abx treatment? Interestingly I developed movement induced phosphenes or damage to the optic nerve AFTER starting the abx but it was in the first six months. From the sounds of things your old opthalmologist declared your optic nerve sound quite far into the abx protocol.

On a different point I still get distinct flares when I'm on metronidazole. What's that about? I get movement induced phosphenes and foot burn when pulsing and it always clears up after stopping. Maybe the flagyl just irritates damaged nerves. Ho hum. Ho hum. Jury still out.
User avatar
gibbledygook
Family Elder
 
Posts: 1414
Joined: Mon Feb 14, 2005 4:00 pm
Location: London

Postby CureOrBust » Sat Sep 02, 2006 4:26 am

I have read that HIGH (as in much more than the protocol uses) doses of flagyl can cause neuropathy.
User avatar
CureOrBust
Family Elder
 
Posts: 2910
Joined: Wed Jul 27, 2005 3:00 pm
Location: Sydney, Australia

Postby Houdini » Sat Sep 02, 2006 9:46 am

I read the postings on this site, but rarely post myself. This thread, however, addresses a number of things I've been thinking about for a long time. About me: Dx's 2.5 years ago. On Copaxone, miocycline and Zocor for 2 years and doing well.

I believe it is up to each person with this dreaded disease to do what ever they can to staunch its ugly effects. We can't wait for neouros or the FDA to decide what's best for us -- we have the disease now, and every day we forego a possible cure or mitigating agent, we run the risk of decline. The rule I apply to myself is that, if there is even a little medical evidence that something might help (e.g., minocycline and zocor) and no great risk of harm, I have a duty to myself to pursue that remedy.

What puzzles me about a large number of posts on this site is the tendency to put tremendous faith in things that are unproven, while showing utter disdain for things that are proven (albeit with less than stunning efficacy, i.e. CRABS). Part of this, I think, is human nature. It, indeed, feels better to put your hopes into what you think is the "cure" (and not being able to have anyone prove otherwise, becuase the trials and data are lacking), than to put your hopes onto something that is in fact proven, but with only 30% efficacy.

Provided that someone can afford them (and I know this is a big proviso), I don't understand why someone willing to venture into unproven treatment wouldn't simultaneoously pursue something proven (i.e. CRABS). I know about the limited efficacy and the side effects, and quite frankly, I don't know whether I could tolerate the flu-like symptoms, which is why I opted for Copaxone, but if I'm going to put faith in empiracal evidence regarding something like minocycline (as I am), I'm sure as hell going to take advantage of the 30% edge Copaxone is likely to give me.

I am no fan of large pharmaceutical companies, but the conspiracy theory approach taken by many here lacks all logic. Yes, big pharma makes a lot of money from the CRABS, but think about how much money the company that finds the cure will make in the 13 years of its patent life -- tens of billions, to be sure. Each pharmaceutical company in the MS game is looking for paydirt in the form of a cure; accordingly, the results they seek (but surely not their motives) are the same as that of every MS sufferer. Again, human nature is such that there is something more comforting about saying, "the cure is there, but those profit-driven bastards aren't motivated to find it," than saying, "with the best minds and technology available, we still can't beat this thing." Finally, while it may be distateful to have the future of our health linked to the profit motives of large companies, we have certainly benefitted more from the results of those profit motives, than if the entire system was based on pure altruism (I own no pharma stock!).

My last point, with respect to the varying results of what I will call "alternative therapies", has been made on this site many times before. I think everyone has a sneaking suspicion that "MS" is acutally a panoply of different, and possibly related, diseases that get lumped under he "MS" category. If this is true, it is possible and highly probably that one therapy (ABX, for instance) will help sufferers of one MS-disease and not others who have another version of MS-disease. Since we don't know which of these diseases we have, we try everything that anyone has reported to be effective, with exactly the mixed resuts one would expectm treating one disease with a treatment meant for another.

Apologies for the long post, but I had to get this off my chest.
User avatar
Houdini
Family Member
 
Posts: 26
Joined: Sun Oct 10, 2004 3:00 pm

Next

Return to General Discussion

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: victoriagrace1


Contact us | Terms of Service