Biaxin BLues

Submitted by mrhodes40 on Sat, 2008-08-09 21:27

Hello!
I have blogged several times lately about my current situation, recap: 3 years of CAP doxy/azi/tini with MS progression obvious last winter. Earlier this summer I spoke to Dr S on the phone to revamp my protocol, I am now on Biaxin twice a day with doxy and will do flagyl pulses as soon as I can.

Here is the interesting thing, after 2.75 years of doxy/azi, with little reaction to the starting of those drugs and 3 months of contiunous tini last summer, I expected nothing from adding Biaxin (clarithromycin), but boy was I wrong!

I STILL can't take a full pill twice a day. The two times I tried it I was literally in bed with a heacache no energy at all and feeling so weak and ill I was almost too weak to get out of bed. Bed feels so welcome, I flop into it like it is magnetic and instantly feel better. There is a sense that if I could just rest for a half an hour I would be better, but if I stay in bed many hours I might feel OK for one trip to the store. In this baby step fashion I am living my life right now. This is really different, and in part it feels like a long bad exacerbation of MS, but I know my MRI's are clean cause the last one was last week.

I am just now up to half a pill twice a day along with my doxy. There is no way for me to consider doing flagyl pulses along with biaxin, I am no where close to being "tolerating" the regular daily regimen. I am completely shocked by this.

Over top of this I have had an absolute flurry of activity to assess my situation, I dragged myself to town to get MRI's and a bunch of new consults input from everyone about the possibiliites and what might be good thing to do at this point. Was I missing anything? Have any new treatments for MS been found to be consistently helpful since I last looked 3 years ago?

Well, no. As a result of the recent diagnositics, I have now been officially diagnosed with SPMS, the purported cause of my inflammation free, stable looking MRI with obvious clinical progression. I was told this is like post polio and the "active phase of the MS" is over but the degeneration is now going on anyway. I do not believe this is correct, and debate of that can be seen in the thisims thread "postpolio ms similarities", a thread I started to discuss it.

In addition to all that, I am also
1. building a new accessible house--phone rings constantly and more to do and arrange all the time
2. still going going thither and yon because my RA is so active and bad that I have a bunch of x-rays and bone scans to do now too, and a new rheumatologist who has all kinds of things he feels have been overlooked and ignored (I've not had a rheumy for 8 years)
3. I looked into revimmune and sent JH my MRI's but was denied because I have no inflammation and inflammation is needed for any success, because that is what it impacts (but I hoped getting rid of mono's macrophages and b cells as revimmune would, would result in a much smaller CPn pool-my theory anyway that justified my asking about it)
4. Over all of this stuff I feel dreadful from the reaction(so weak almost faint) to the biaxin and at the same time worried in general about whether or not the prgressions will stop, and hopefully reverse

So here's the scoop/reality of my life right now: Everything I do, I do poorly because my strength and stamina are so poor. I am also worried about when/ if I can get the progression to stop.

A good thing that has happened, in spite of the new diagnosis, is that I have had an opportunity to investigate some other possibilities and have found there is nothing I qualify for and have nothing that I'm "missing" in the regular MS world. There is some comfort in that.

In addition to that, I want to apoligise to everyone for not being more attentive and helpful to everyone, I am just plain overwhelmed so tend not to get here.
Thanks for listening!
Blessings every one!
marie

Marie, I'm only a couple of paragraphs into reading and you will forgive me for responding before even finishing, but I am blown away. First, that the biaxin has slammed you, which, perversely, I figure is a good thing. Second, that your MRI is stable. With all you've had to deal with, that has to be a huge relief. More later, but I can certainly relate to the 'magnetic bed'.  Image removed.

 

Okay, plowed through it.  Wow, do you have a lot on your plate.  Your new-build is like my huge restoration project; one issue leads to three more and the whole thing mushrooms on you before you know it. 

There are times I feel guilt.  You and I started at the same time and it was kind of an 'I'll take the plunge if you take the plunge' thing.  You dove in when you were SO hesitant and I admired that.  Over these three years, you've had improvement (cognitive and stamina) and then not so much.  I want you to be well.  I want you to know what the difference is between the two of us, that I lucked out and you are still fighting and I want you to be able to fix it.

Since the MRI is good, then the infection is no longer active in your brain.  That's good, that's great!  So what is still happening inside you???  SOMEone has got to be able to figure this one out.  Meanwhile, do NOT let a label get you down.  Nothing is different from who and what you were the day before someone said SPMS to you.  Doctors love labels; it gives them a sense of security to be able to name something.  It's what we human beings are  more comfy with than saying, "Um, I don't know."

Lastly, you have given all of us so much of your time, patience and knowledge!  You have no reason at all to apologize for putting your time and energy into what YOU need right now.  We're all behind you and I think most of us still have 'an ear to the ground' for you, always looking for some small bit of info that might be your last puzzle piece.  Be well, friend.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

hi marie. wow yes it sucks to feel crappy. Hey I was less stiff and walked better before i started. But my mri keeps getting clearer too. Are your lesions going or just no enhancement.? hey i wish i knew why sarah and mac are better and you aren't yet. I keep hoping i will start seeing some lessoning of tightness geez i hope so.You are right there is nothing else better out there. Hmm iget huge reaction from doxy, batrim ds more than roxi or rifamp.I am thinking that we need to switch up antibiotics to get the bug in remaining hidden areas. I do think we need to figure how the differences effect each of our recoveries. notice how daisy gets different reactions and improvements changing up abx. on good note i have discovered that nystatin and i am sure diflucon i just had nystatin really reduces the urge to pee for again probably a little yeastie from which most of us suffer. oh  well i will keep on eating the pills flagyl coming soon. good luck. i guess no  enhancement means no inflammation but i'll  tell you i know i have super inflammation all over or i wouldn't be so darn tight. Barbara oh do you take ldn?

NAC and glutathione push for years all supplements in protocol)IV vitamins b1-12,F10/29/07 roxy300,doxy200,rifampin300aziyh mwfMS flagyl 1day 500x2 11/23/20074th pulse 2.8.081500mg 8days 7/08 finished 10th pulse on 300 rifamp bid, doxybid 7/2008

Hi Barbara, I have not tried difucan thanks for the reminder. Some years ago I tried nysatin but it did not help back then. I imagine it could now, many seem to go for that treatment as an adjunct and find it helpful. I use three lac and other supplemental types of assist there. Yes I do notice there are many people changing many things on this journey, I look forward to every person's documentation of what's going on with them. My MRI is inflammation free but not lesion free I have 6 one 3cm across. They are unchanged from 3 years ago when I started. The neuro says this is the hallmark of SPMS and it simply means the degeneration becomes ongoing with no changes in MRI. I have a black hole in the largest lesion.

On CAP since Sept '05 for MS, RA, Asthma, sciatica. EDSS at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxy 200, Azith 3x week, Tini cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithro

hi marie. wow yes it sucks to feel crappy. Hey I was less stiff and walked better before i started. But my mri keeps getting clearer too. Are your lesions going or just no enhancement.? hey i wish i knew why sarah and mac are better and you aren't yet. I keep hoping i will start seeing some lessoning of tightness geez i hope so.You are right there is nothing else better out there. Hmm iget huge reaction from doxy, batrim ds more than roxi or rifamp.I am thinking that we need to switch up antibiotics to get the bug in remaining hidden areas. I do think we need to figure how the differences effect each of our recoveries. notice how daisy gets different reactions and improvements changing up abx. on good note i have discovered that nystatin and i am sure diflucon i just had nystatin really reduces the urge to pee for again probably a little yeastie from which most of us suffer. oh  well i will keep on eating the pills flagyl coming soon. good luck. i guess no  enhancement means no inflammation but i'll  tell you i know i have super inflammation all over or i wouldn't be so darn tight. Barbara oh do you take ldn?

NAC and glutathione push for years all supplements in protocol)IV vitamins b1-12,F10/29/07 roxy300,doxy200,rifampin300aziyh mwfMS flagyl 1day 500x2 11/23/20074th pulse 2.8.081500mg 8days 7/08 finished 10th pulse on 300 rifamp bid, doxybid 7/2008

Hi Mack, Yes, building is an interesting project mostly because budgets go out the window when the work really starts becasue Problems-capital P- come up that "no one" expected. Don't you dare feel guilt, I am grateful for every person who succeeds because it means it can be done! But Mac really you were still in the invisible phase of MS and I was long down the path when I came to treatment already using a cane. That is NOT the same thing. OTOH, RIca was progressive and Sarah had the dread SPMS diagnosis as well so it is not that it can't be done by one in that boat, butmy guess is that it will usually be more complex. I notice Daisy is really posting a unbelievably aggressive and complicated regimen, the diagnosis justifies it, but maybe someone like me needs that too. The differences between us are unknown and I believe with time it will be clear what makes these differences and we will forge a data base that tells people what to do and how to proceed best. It may be with time it becomes clear how to tell early on or before hand who will succeed....that'd be good. I do wish now I'd tried Biaxin the first year. I'd be in a different place maybe by now, but I was sort of thinkingI was lucky to be so "tolerant" of the regimen. I want to mention again that I did continuous tini last summer and it was not too bad..... thanks Mac!

On CAP since Sept '05 for MS, RA, Asthma, sciatica. EDSS at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxy 200, Azith 3x week, Tini cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithro

Marie,

No apologies necessary here.  We are all behind you.

Biaxin has not been my friend either.  I am still recovering lost independence since my stint on Biaxin/ Pyruvate this past May.  Ugh.  To think I was able to stand in the shower in March...*sigh*...  Now I need help arising from the shower chair.  Grrrrr.

 

Interesting to note, Marie:  Back at my rrms diagnosis in 2002, I treated empirically for Lyme with Biaxin 500mg twice daily for about three months.  I was very independent then, drove myself to a LLMD in southern MN, still did the grocery shopping, went to the kids' school conferences, etc.  It immediately helped me with energy and cognition, but I still had my limp, so the doc refused to renew the Rx.  It haunts me....the if only's and the what if's....and the why me's....??

Boy, what I'd give to be able to limp like that again!

I cannot even take Biaxin today without it knocking me sideways.  What has happened?  What changed?  What gives? 

It's just not fair. Image removed.

Wheldon Protocol for rrms since Oct '05.  Added LDN 4.5mg qhs Oct '07.  All supp's.  Positive IGG's for Lyme Disease,Babesia, & Erlichiosis Sept. 2008.  Currently:  Mepron 750mg bid and Azithromycin 250mg qd for Babesia.

Hi KK2, Yes we are experienceing similar courses it seems. I found the biaxin very depressing as well and have thought of you and wondered if you noted that the drug made that worse as well? I am sorry for the regretful loss of the LLMD treatment those years ago becasue of a dumb thing like the limp did not go away. Dang! regret is tough to endure the "if only" and "what if" can drive you bats. In a way this was one good thing about me recent thing is that I did a good thorough investigation of the other possibilities I might use starting right now. The revimmune message board on thisisms was so upbeat, I thought it might be the thing. Turns out the people posting on there were largely wishful thinkers, some do seem to have a good result but only about 50% according to the published findings JH is putting out, and those are the people who were early in the disease with clear RRMS, not people like me. Furthermore they've treated very few people with MS and have followed them not for a long time, so it is early to tell what the long term result will be. It is entirely possible that all of the people will eventually become progressive. In the end I went ahead and applied to the university thinking if they said Yes I'ddecide then if I would go for it, and they said no,no inflammation so we would not expect it to help you. This is good because now I can stop worrying I will regret it later that I did not do it. If revimmune turns out to work great and I progress more I will not have "chosen wrong", I just know that I was not a candidate. I hope it turns out we both do well with stronger/different antibiotics. I hope you can soon tolerate treatment. I also hope they get stem cells figured out soon for repair! Let's hang on to everything we can KK2!

On CAP since Sept '05 for MS, RA, Asthma, sciatica. EDSS at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxy 200, Azith 3x week, Tini cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithro

Marie, I agree with Mac... Your SPMS label is not significant, your MRI results are.   Your reaction to Biaxin shows that something else is indeed going on and that at least is a step in the right direction.  

Regarding labels: let me tell you a story... I was refered to my very kind and caring doctor by the practice nurse who does a review of the health over 50's every year.   He examined me and looked at my blood tests and pronounced with a broad smile on his face that he could give me not one but two diagnosis.   He seemed to be delighted that he could tell me I was suffering from hypertension and asthma.  Now I know that he would prefer that I should be healthy but the delight he expressed was down to the fact that he had identified two complaints I was suffering from.   For him it was a double hit... Two successes.   They need these labels our medical practitioners.   We don't.

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

Michele, thanks for that story. I am trying to let go of the idea is means something significan't jsut cause he said it. We are culturally trained to accept any suggestion from an MD!

On CAP since Sept '05 for MS, RA, Asthma, sciatica. EDSS at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxy 200, Azith 3x week, Tini cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithro

 

Marie, being officially labeled SPMS rather than you figuring it out yourself matters not one jot.  First take Michèle's doctors glee when he told her with a broad grin that h could diagnose her with both hypertension and asthma, both of which she knew she had already.  Then think that most neurologists are reluctant to diagnose until they really have to just in case there is something that might work, not that there really is from their options. 

As for the biaxin, your reactions must show that you are still fighting some sort of infection, so although now might not be the best time to be experiencing it, what with all the building work and so on, something positive is happening and I am very pleased for you. 

For everyone else, here is a picture of the work in progress!......................Sarah

 

                                   Image removed.

 

An Itinerary in Light and Shadow

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Hi Sarah, Well, that's a fancy portrait there is it not? ANd I agree that the reactions are a positive, I can see them no other way even though you reacted hardly at all in treatment. I was a little worried becasue I had taken biaxin for a UTI prior to abx and I could NOT wait to get done with it, I felt terrible on it. It was that that made me think I might "react" to CAP but I didn't, and that was kind of odd but now we see a reaciton all this time later. It fascinates me. thanks

On CAP since Sept '05 for MS, RA, Asthma, sciatica. EDSS at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxy 200, Azith 3x week, Tini cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithro

Wow. Am I glad you are feeling so crappy from the Biaxin! This may not make sense to others here, but you know, Marie, how I've been puzzling out your decline despite the CAP. I can't tell you how relieved I am that you have some new data to work with, and a new protocol.

Your reaction to Biaxin is so telling: there is major infection going on that the regular CAP meds were not hitting. I have some hypotheses about this, but personal reactions are my first wave. As Mac said, you really do have a lot on your plate and I know from my own treatment that stress and work load have a big effect on my overall condition, and on my response to antibiotics. I truly think that stress increases bacterial load, and there is ample suggestive evidence of this in terms of cortisol production and suppression of tnf-alpha and such. I don't at all think this is the cause of your decline, but certainly contributes.

You and I have had these discussion, but your report makes me think this through a little differently. So I'll think out loud for heuristic purposes. On the Biaxin reactions, some hypotheses:

There are strains of Cpn, and we tend to talk here as if "Cpn" is a monolithic category. Different strains of a bacterium can differentially respond to antibiotics. It's quite possible to have more than one strain of Cpn in one's body as well. This could be one reason why partial improvement on the standard CAP (azith, doxy, flagyl) might occur: we knock down one strain of Cpn and then only minimally effect another strain. We have no way of doing susceptibility testing for this until the Vanderbilt lab gets going.

There could be other bacterium infecting which respond better to meds other than the standard CAP. You could have a non-Cpn bacteria that is sensitive to Biaxin.

It could also be that Biaxin simply penetrates the tissues where your particular load is better than anything else. The only info we really have on tissue penetration is from very general studies and from standard measures that measure what is measurable, such as when antibiotic is detected in the skin. The assumption that this equals penetration everywhere is obviously a big leap.

To my mind all of this argues a strategic treatment: if you are not responding to the standard Wheldon CAP, or have reactions to the CAP that decline over time, but either plateau or decline in the original condition, it's time to rotate in different antibiotics and/or higher doses.

Currently, I'm doing a run of 300mg roxithromycin with the pyruvate twice a day. The higher dose is clearly getting places it doesn't at a lower dose. Daisy has commented on the strategy of rotating different abx through, commonly used in Lyme's treatment, and I think as we see the wider variety of treatment responses over time to the CAP's that this is an important strategy to have in our war-chest.

 

CAP for Cpn 11/04. Dx: 25+yrs CFS & FMS. Currently: 250 aithromycin mwf, doxycycline 100mg BID, restarted Tini pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

Hi Jim THanks for the thoughts and I am glad to help out by being a troubling member! Honestly, I have been clar from day one that this is experimental and that in part we may find that with time the eventual protocol does not look like the thing it is now. quote "To my mind all of this argues a strategic treatment: if you are not responding to the standard Wheldon CAP, or have reactions to the CAP that decline over time, but either plateau or decline in the original condition, it's time to rotate in different antibiotics and/or higher doses. " end quote Yes!! I wish I had known to do that sooner. In my case I was complacent about being able to "tolerate" the CAP so well, and it took a really long time 2 full years to be aware I was truly progressing. Since MS impacts nerves in a permanent way that can't recover in some cases, and I have a black hole I thought my leg was not getting better because it just was not going to. I seemed to have stopped progressing, but eventually as mentioned I did have that progression that was notable. I mention this because I guess the early marker of not "responding" was tolerating treatment so well with so little reaction. Or maybe the key would be to change it up simply after a year rather than waiting to see "if" you need to. I did not realize I needed to that's the heck of it. I guess as Dr S says in his outline we need to go as fast as possible if we have MS. I tried continuous tini as my first "ramp up" and tolerated it really pretty well for 3 months. It was a month after that ended the slide started, so wierd. You'd think I could have held the line for the next thing. But I too find the reaction to Biaxin reassuring. I can't wait to try flagyl on biaxin and see how that is. I may even try tini just to see and compare the old tini tolerance to tini tolerance on biaxin If you make an assumption my particular strain of bug is somehow resistant to azi, then they would not have been held in the abherrent anaerobic form when tini came along, voila, tolerate it easy. Now if Biaxin is somehow better/stronger for me then perhaps the bugs are all converted and thus now I will have a whopper reaction rather than the mild tolerable ones before. I enjoy Jim your ongoing documentation of your own journey and reactions. You too do seem to "enjoy" lots of different tolerances. It is so interesting to read about everyone's stuff! I find it continually fascinating that people go up and down rather than healing in a linear path marie It seems possible.

On CAP since Sept '05 for MS, RA, Asthma, sciatica. EDSS at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxy 200, Azith 3x week, Tini cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithro

I was getting on line to ask if it common to have porphoryia with Biaxin 500gm twice a day. I was on doxy/azith/nac/8tini pulses for 1 year, and after reading that rotating the abx, is a good idea, i decided to change from azith to biaxin. I thought since I was on the protocol for 1 year, that i would breeze through the change. boy was I wrong. I had some of the worst porphoyria i've ever had.

Mphs, TN. CFS, hypoT (Hashi), adrenal fatigue, hormonal inbalance. right arm neuropathy-getting better. cpn, myco, EBV, CMV, HHV-6. Cap began in 6/07. NAC 2400mg, mino 100mg bid, biaxin 500mg bid. cytomel, flagyl bid continuously.

Sharon that's two of us, and KK2 also it seems!

On CAP since Sept '05 for MS, RA, Asthma, sciatica. EDSS at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxy 200, Azith 3x week, Tini cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithro

Marie -

Seems you keep coming back full circle as I frequently do every time I look at what else I might do to help my husband.  I know you have thoroughly researched the options as I have followed your posts on at least one other board.  I too have and keep coming back to a pathogenic cause to my husband's illness.  Initially at least figured most of the cocktail would be reasonably immunomodulatory if nothing else...

Re the Biaxin reaction - like Jim, I am happy for you.  Gives hope as this is certainly not a normal reaction to clarithromycin.

I find that every time my husband's doctor changes up his antibiotic cocktail and pushes the doses higher - he has a reaction - clear and often remarkable reaction - to each and every one - even within the same class of agents. 

When I look at Sarah's remarkable progress, even she switched antibiotics - Flagyl to Tindamax and to Rifampin.  Rica too - used at least one year of Rifampin.

Perhaps we need a good discussion here of at what point in a CAp for MS do you change things up if you haven't seen response?  6 months, 9 months, 12 months, etc...  How many different cocktails should you use until you have scoured your body?  What of patients who have CPN and borrelia or other tick pathogens, should they treat more aggressively at least some point in the CAP?

Marie - Having struggled with aggressive RA, I can't imagine what it's like to battle these two monsters.  Sending you many good vibes. 

PS - If you ever want to know some of the things I did to put my RA into "remission" - feel free to PM me.  Have no idea if any of them might help you but will be glad to share.

 

 

 

Daisy - Husband on CAP 5/07.  Husband died from Acute Myelogenous Leukemia Secondary to the Infusion of Novantrone.  Ie - the treatment with the conventional MS drugs killed him.

Daisy on her own CAP 11/2012. 

Daisy, I think you are on to something, it is hard to know what to do when to change so discussion makes sense. Unlike your husband my MS was pretty stable and longstanding with dropfoot on the right so longstanding that the leg might not come back. I wanted progression to stop, but considering my course, that was always going to take time to see if it was working. I think a discussion of when to alter things is a good idea, we have a lot of people with different courses here now to add to that in one thread. I'll PM whenI get more strength. I'd all done for now see everyone soone and thanks to all! marie

On CAP since Sept '05 for MS, RA, Asthma, sciatica. EDSS at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxy 200, Azith 3x week, Tini cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithro

As always so much sage wisdom from everyone. I have seen this over and over with Jim. Same class of abx but such a different reaction. 200mgs of Mino floored Jim where 400mgs of doxy did little. Tetra at high doses has caused some very noticable backsliding over several months. Someone correct me but doesn't biaxin have better entry to the brain than zith? Marie, I think you are like the "Onion" mentioned by our doc. There are many layers to your disease and the layers only come off one at a time. The biaxin might just be peeling one more layer. If you were under the care of our doc, he would do the kind of switcharoo with the abx that you are doing right now. Keep at it.
--------------- "Chance favors the prepared mind." --Louis Pasteur Husband treating MS with CAP
Red

Marie,

I find myself kind of speechless since your continued struggles seem so completely unfair.  Let's hope your reaction to Biaxin is a telling sign and that you will soon start receiving noticable improvement...

Treatment for Rosacea

  • CAP:  01/06-07/07
  • High-Dose Vit D3, NAC:  07/07-11/08
  • Intermtnt CAP, HDose Vit D3:  11/08-01/09
  • HDose Vit D3, Mg, Zn: 01/09-

Marie,

Thanks so much for posting.  We all need to know what's happening so we can learn from one anothers' experiences, both positively and negatively.  Image removed.

I so feel for you as I've been suffering myself these days and think it's due to stress and my first tini pulse over 2 weeks ago now.  I had just logged in to post my experience HERE, since I felt it important so others could read and I found your post.   

I too am having the "bed magnet" experience which I call "bed hugging."  It's the only place I feel really ok but then I find after I rest for a time my mood and fatigue improve and I can get up and handle quite alot for someone that was so sick, as you also mention but only for a short time and then back to bed hugging for me.  Image removed.

BTW, the comments Jim made about stress seem to fit my experiences too, not only now but in the past and as I've conversed with others it does them in too.  We have to find every way we can to eliminate stressors from our lives that stimulate cortisol production and when we can't, like building a new home or something life throws on us (I've had alot of those issues over the past few months) we suffer miserably, for a time.  

Whether the hormone changes weaken the immune system and allow the infection to proliferate or that somehow the antibiotics work better, it definitely seems to cause a tipping point to happen for me as well.   

Again, thanks for posting your experiences so we can all learn and encourage one another.  Image removed.

NAC 2.4g, Zith 250mg/MWF, mino 200mg, Tini 5day/1g/5 pulses, Valcyte
Supplements, CFIDS/FMS, Hashimoto's, Psoriasis, PA, IBS, Sec Addisons

Don't believe everything you think!  

Marie, it really isn't fair that when we both had a definite SPMS diagnosis, we should have reacted so differently.  Two things spring to mind, the first being your attack by probably lyme infested insects years before, just before both your MS and rheumatoid arthritis started, if I remember correctly, the second being the fact that I seemed to have very few, if any, coinfections but my MS had recently become very aggressive just before I started treatment and in David's experience the people with the most actively aggressive disease when starting CAP seem to respond the quickest.

Daisy is correct when she says that I did switch antibiotics at two points: the first was when I changed doxycycline for rifampicin, keeping up the roxithromycin, then metronidazole for tinidazole.  The second swap was after I had changed to intermittent therapy, though and I saw people having a much easier, less depressive pulse with tini.  It also tastes a lot better, as you know.  I can't say that either of those two are preferable but rifampicin maybe did make a difference although I seemed to have got over the worst reactions to abx before I started it.

Are you hoping to get the house finished before winter sets in?  Its come on leaps and bounds already, but perhaps then you will be able to relax and really concentrate on getting better.  The fancy portrait just shows how hard you have been working and how high up you seem to be, looking down on the photographer!..................Sarah

An Itinerary in Light and Shadow

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Reenie, I agree stress reduction is very important and hard if you have some big thing going on as we sometimes do! Sarah, it should be done by winter I would think. ANd yes the angle is unflattering but isn't it funny with the roof off like that? Yes your course was very different but then again you had the clear pneumonia trigger so near to your start of aggressive MS and my lyme-ish possibility is now 17 years gone by. Who on earth would know how to correlate that to treatment regimen?

On CAP since Sept '05 for MS, RA, Asthma, sciatica. EDSS at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxy 200, Azith 3x week, Tini cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithro

Marie said, "The differences between us are unknown and I believe with time it will be clear what makes these differences and we will forge a data base that tells people what to do and how to proceed best. It may be with time it becomes clear how to tell early on or before hand who will succeed....that'd be good."

I would argue the point.  Image removed. She should have said, "It may be with time it becomes clear how to tell early on or beforehand HOW TO SUCCEED."

I truly believe this is the answer, for ALL of us.  I just think it needs individual tweaking.  Unfortunately, we (here) need our salvation now, not once the treatment has been refined for dna, co-infections and whatever else one can imagine.  Therefore, we struggle and rail at the imperfections of the treatment, and somehow we find our way in the darkness.

You're going to get your answer, Marie.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Sarah, You may have answered the 'why the difference' question for me and Marie. She commented on how she'd been ill for quite a while and I hadn't. But the other piece of the pie was when you commented David has great success with those who are progressing rapidly.

I was developing a new symptom every day or two, for several weeks (it was fascinating, in a perverse way), without relief. Uncontrollable muscle spasms, foot drag, loss of balance, spongey feet, exhaustion, short term memory loss, brain fog, loss of hand/eye coordination, numbness in fingers, feet, Bell's palsy, eye twitches, phantom sensations on my skin, flushing, ever-lower body temps, irregular heartbeat, that oxygen starvation people here talk about (which I couldn't describe until I saw it here)...

I was a mess from the onset of optic neuritis in August of 2005 and was contemplating disability at my job by the time I started abx in October of '05. I'm probably one of the rapidly declining patients David speaks of, but I was fortunate enough to get treatment quickly, as you did. Hopefully, a vaccine will be found and fewer people will have to experience what we've all been through.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Lexy, Thanks, I wish I did have an opportunity to see a more interested creative doctor. Mine is kind and caring but married to the MP and thus really dismissive of our approach and unintreested in the research and theories because in her mind the all important "vitamin d steroid hampering of the immune system" has been ignored, therefore we will "never" have success. She will prescribe for me as I request with Dr S guidance so everyone's input means that is where I will get to go. Red, thank you! I appreciate your consideration. Thanks Mack, yes I am and always was sort of slow moving in the progression department, with the single exception of the inital illness which was white hot fast and bad-If I could have been treated then..... And yes I will work toward a resolution with this approach. Here's a thought: there may be a need for people who've been ill a long time to aggressively consider more adjunctive treatments for co infection. I mean look at it this way, the person with 17 years of illness has had a crummy immune system for many years and many oppotunities for re-exposure to EBV, or secondary infections with other agents. I always loved to hike, and did so as long as poss after diagnosis. What if a person had CPn then got a lyme or babesia type co infection? what resources would the body have to fight that? Wouldn;t you reach a tipping point where in there was no recovery and no repair? I can tell you the triggering event for the initial presentation of MS/RA in me was an acute infection with cold sores-I never had them as a kid, then got them from my husband accidentally. After the inital infection I got them maybe once in 3 years, then yearly, then almost quarterly. This is a marker for an immune system failing slowly. I suppose it is plausible to assume that other things I contacted in that time frame were likewise not well contained by the immune system, thus a higher and more out of control co infection population is likely. I bet it is not even necessarily related to time, but may be highly individual. marie

On CAP since Sept '05 for MS, RA, Asthma, sciatica. EDSS at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxy 200, Azith 3x week, Tini cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithro

Marie,

Finally, a reaction! What you describe is what I felt 3 1/2 years ago. From my own experiences, the length of time from the beginning of symptoms may have much to do with recovery period, but we don't know yet. You may surprise yourself and delight all of us. Look at Daisy's husband - his improvement is the most blatent example of something that should not happen. The rest of us are adding to the mountain of evidence that these bugs are creating havoc.

It is time for me, also, to do something - I have been mulling a Rifimpin "test", but you are uning Biaxin. We have some and I may join you. Richard suggested I wait til I stop flagyl. I am on my 12th day of flagyl, albeit at a reduced dose of 375mg at bedtime, which I continued after my regular pulse; that would not have been possible even 2 years ago.

3/9 Symptoms returning. Began 5 abx protocol 5/9 Rifampin 600, Amox 1000, Doxy 200, MWF Azith 250, flagyl 1000 daily. Began Sept 04 PPMS EDSS 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

Marie,  I'm with kk2.  Please discard that concept of a tipping point beyond which there is "no recovery and no repair."  You are at the cusp of a promising new phase in your journey, time to shake-up your protocol.  Now, how's that hyper-coagulation issue coming along?  As you know from my PM a while back, I'm waging battle with Steve's biofilm problem, and the information you provided is appearing to be quite helpful.  Who is winning your fight with fibrinogen?

Joyce~caregiver-advocate in Dallas for Steve J (SPMS).  CAP since August 06, Cpn, Mpn, B. burgdorferi, systemic candidiasis, EBV, CMV & other herpes family viral infections, elevated heavy metals, gluten+casein sensitivity.