SPMS, CAP - and progress
Hello All - we are new here and rather trepidatious...
Wife (L) has SPMSi and we just started CAPi (on advice from the fabulous Dr Wheldon) 2 days ago (16th April).
I'm almost disappointed not to have seen any adverse reactions yet(!!).
However - does anyone know of a good liquid form of probiotics? L has a PEG tube fitted and while I can crush her pills if her swallowing gets bad, as it can, the probiotics I have are a bit 'gooey' and don't crush enough to get through the tube.
Any ideas?
Many thanks.
- Login or register to post comments
- Email this page
- Printer-friendly version
Water Kefir. It's an awesome source of probiotics and will keep the yeast in her system in check. The antibioticsi can upset the balance, promoting a yeast overgrowth called Candida. Candida is an added complication you do not want to have. The water kefir is the only thing that has helped me with Candida.
Water Kefir is cheap to make, but you do have to make it. It's not complicated. I've got more info in my blog about it: http://defeatingms.wordpress.com/water-kefir/
I wish I had started drinking/making it years ago.
M.S., Dxi 1/2006, CAPi 6/2010. Currently: 200 mg Doxyi, 1 g Amoxi, 250 mg Azithro (MWF), 1 g Tinii (5 d pulse), 2400 mg NACi, 3.5 mg LDNi, 10 g Vit D, 800 mg Vit E, 1 g Vit C, 400 mg ALA, 800 mg ALC, 1 g EPO, 30,000 mcg B-12
Kefir is good but as Jen says, you do have to make it, and this after you have obtained some grains. What you could also use is plain, live yoghurt, remembering to take it two hours apart from antibioticsi if used as a probiotic, although I often used to eat some extra with doxycycline since it was very soothing on the stomach.....................Sarah
A Journey through Light and Shadow
Thanks Jen and Sarah.
It looks like I have a bit of homework to do - never heard of water kefir. Jen, I shall read your blog avidly.
I've just read it briefly - and I think even I should be able to cope with it! I'll dig out the cauldron...
Great advice, generously given. Huge thanks to both of you!
Wife (spmsi) pre abxi problems;
Balance, speech, tremors, swallowing, walking, 'cogfog', fatigue. LDNi 3mg 3 years, PEG tube 2 years.
Currently on 200mg Doxyi, Azithromycin, a bucketful of supplementsi and just starting third metroi pulse
LOL. I was just telling my husband yesterday that our kitchen is starting to resemble an apothecary shop :o)
If you have any questions, feel free to ask.
M.S., Dxi 1/2006, CAPi 6/2010. Currently: 200 mg Doxyi, 1 g Amoxi, 250 mg Azithro (MWF), 1 g Tinii (5 d pulse), 2400 mg NACi, 3.5 mg LDNi, 10 g Vit D, 800 mg Vit E, 1 g Vit C, 400 mg ALA, 800 mg ALC, 1 g EPO, 30,000 mcg B-12
Two weeks into treatment. There have been some noteable changes.
A few days into treatment, L's hands and fingers started to tingle. This has since subsided a little and she has regained feeling in her fingertips. Also, she can wiggle her toes for the first time in 2-3 years. Not particularly useful, you might think - but it seems to have made her more stable in chair-to-chair transfers.
L is also mentally brighter than the top of her range over the past 2 years. She is ordering me about again (this is a good thing)! Along with this, her speech is noticably better.
The only adverse reactions we have noted is a slight worsening in her swallowing problem, which means feeding via her peg tube. I am probably paranoid about this but after two bad cases of aspiration pneumonia, it is better to be safe than sorry. All the abxs and supplementsi can be ground down to go through her peg tube apart from the probiotic pills - but we have just received some water kefir grains (thanks for the advice, Jen), which are brewing as I speak, so we should be OK.
Also, she is re-experiencing some unusual phenomena that haven't occured for two years - namely 'white lights' in the periphery of her vision, which used to be a precusor for a bad session - but apparently not this time. Anyone else get these?
I should stress that the positive effects are extremely unusual. L hasn't lost any symptoms for three years. It just doesn't happen. Could this actually mean that the CAPi will work, for us? Time will tell. In the meantime, we are very happy with progress so far.
Wife (spmsi) pre abxi problems;
Balance, speech, tremors, swallowing, walking, 'cogfog', fatigue. LDNi 3mg 3 years, PEG tube 2 years.
Currently on 200mg Doxyi, Azithromycin, a bucketful of supplementsi and just starting third metroi pulse
Great news!
M.S., Dxi 1/2006, CAPi 6/2010. Currently: 200 mg Doxyi, 1 g Amoxi, 250 mg Azithro (MWF), 1 g Tinii (5 d pulse), 2400 mg NACi, 3.5 mg LDNi, 10 g Vit D, 800 mg Vit E, 1 g Vit C, 400 mg ALA, 800 mg ALC, 1 g EPO, 30,000 mcg B-12
Events like L's are what we love here. Yes, tingling toes and fingers are a start and a wonder. I hope that she gets more and more feeling back. I had iritis for over twenty years - lots of bright lights and no straight lines. All gone.
You are in the best possible hands.
Rica
3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan In for the duration.
Yes, you sound like you're on the right track. Don't be afraid of 'revisiting' old sites of infection (which seems like an exacerbation, but isn't). Wherever the bacteria is being attacked, there will be inflammationi, which will kick up old symptoms a bit. Keep working at flushing the gunk out of her system and lessening the inflammation.
Getting mental clarity back is a wonder, isn't it? That was one of the first things for me and I was SO grateful.
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
I can't tell you how wonderful it is to have everyone's support and encouragement - the kind of thing that one might hope for - but rarely get - from 'mainstream' professionals. Thank you all.
The mental clarity thing is probably the most important for us. We can cope with all the rest as long as the personality is intact. The only downside is that L becomes more aware of her other symptoms!
Wife (spmsi) pre abxi problems;
Balance, speech, tremors, swallowing, walking, 'cogfog', fatigue. LDNi 3mg 3 years, PEG tube 2 years.
Currently on 200mg Doxyi, Azithromycin, a bucketful of supplementsi and just starting third metroi pulse
White lights in the periphery of her vision. I had something similar, i would get visual disturbances, like white snowflakes falling down in front of my eyes, even when i closed my eyes i think. I had them before capi and i had them after. I suspect it has something to do with die-off in brain area or inflammationi. Beeing on cap i think its a good thing, a sign that something is happening, if your off cap and the episodes get longer and longer probably a bad thing,..
How things can change in one week!
One of the difficult questions about this treatment is whether 'bad patches' can be attributed to the treatment or the normal course of the disease.
Over the last week, L became increasingly sleepy and then very congested. I was concerned that the congestion may have been a new problem but I think it was a combination of excess saliva and poor swallowing. Anyway, that seems to have been largely cleared by sitting L upright in bed.
This has been followed by L becoming disconnected and unresponsive - almost like there is 'no-one home'. In itself, this is nothing new. She has had several of these kinds of episodes in the past and they generally peak in 2-3 days of unconsciousness and then gradual recovery. If there is a difference to the norm, I would have to say that it her level of mobility has been better for longer and she seems to be more aware of the issue - she is historically fairly oblivious to it. So this may be a new issue.
So, the question for me is; Is this down to normal desease process or the treatment? If it is down to the treatment, perhaps I should go a little easier and leave off the azithromycin for a few weeks. If it is the normal pattern, there may be little to be gained from delaying things.
Or am I just 'bottling' it?
Wife (spmsi) pre abxi problems;
Balance, speech, tremors, swallowing, walking, 'cogfog', fatigue. LDNi 3mg 3 years, PEG tube 2 years.
Currently on 200mg Doxyi, Azithromycin, a bucketful of supplementsi and just starting third metroi pulse
One way to hazard a guess is to think how her progression has been over the last year: was everything gradual or were there big leaps which didn’t resolve? On the whole, though, it is probably best not to think too much about it but just to see what happens: I started with the intenton of keeping a journal but rapidly got so annoyed that I deleted the lot.
When I started I took just doxycycline for I think about three weeks mainly because it took that long to get roxithromycin. (I never took azithromycin except for one day when I ran out of roxi and was already on intermittent protocol. It gave me a blinding headache so I never repeated it.) David’s idea is that people should really start antibioticsi one at a time, in order to get used to them, so it might well be worthwhile to leave off the azithromycin for a while.
You are right when you say that regaining mental clarity is the most important thing: I never realised that I was losing it until I got it back: David did though, and he was distraught. I must say that when I did get my clear thinking back, though, I suddenly realised how bad I really was. I still sometimes find it hard that I can no longer cycle the length and breadth of Europe. (Maybe a slight exaggeration: when I went through southern France and northern Italy I sent my bike on ahead to Avignon!) But really I am glad that I can attack the front garden once more and use a stepladder to clean out the tall front porch..............Sarah
A Journey through Light and Shadow
Thanks for this, Sarah.
I think there are enough differences from the normal pattern of things to suggest that it is indeed a reaction to the treatment, so I am inclined to think it will be a good idea to take L off the azithromycin and stick with the doxyi for a few more weeks.
These events are always so frightening. With severe pneumonia in her history from similar symptoms, it is easy to expect the worst. L cannot communicate anything and I can only get rudimentary responses from her. Everything is a step into the unknown.
L also loved cycling. I almost daren't hope that she might be able to cycle again...
Wife (spmsi) pre abxi problems;
Balance, speech, tremors, swallowing, walking, 'cogfog', fatigue. LDNi 3mg 3 years, PEG tube 2 years.
Currently on 200mg Doxyi, Azithromycin, a bucketful of supplementsi and just starting third metroi pulse
I think many of us slept through the beginnings of treatment, so I doubt this is a downslide. It seems likely the body just shuts down and does what it needs to do, eliminating any extra demands for energy and just concentrating on the abxi battling the cpni. Once you've changed the internal climate, there's sure to be a period of adjustment to the 'new normal'.
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
I hope I'm not over-posting but I thought a quick update was in order. MacKintosh, your comments about energy are probably spot on. L has spent the last few days in what appears to be total exhaustion. Not properly sleeping, eyes watery, salivating for England, just looking straight through me and unable to communicate in any way. She hasn't entered the usual phase of unconsciousness (yet, anyway) and there are some signs of improvement despite a new bout of diarrhoea. Yesterday, I got a few of her heartwarming smiles and this morning she is able to make herself understood a little. She is presently properly asleep in a more comfortable way than recently, which I think bodes well.
All this makes me hopeful - that it is indeed a reaction to CAPi and that useful things are happening.
It also gives me the feeling that the treatment is going to be as harrowing as ridding L of possesion by an extremely tenacious evil spirit!
BTW, does anyone know if Immodium is safe to take with CAP?
Wife (spmsi) pre abxi problems;
Balance, speech, tremors, swallowing, walking, 'cogfog', fatigue. LDNi 3mg 3 years, PEG tube 2 years.
Currently on 200mg Doxyi, Azithromycin, a bucketful of supplementsi and just starting third metroi pulse
I've just noticed that L has developed quite a rash over the back of her legs. They are dark purple spots, like tiny bruises. I really need to know if they are significant. Can anyone cast any light on this? Thanks.
Wife (spmsi) pre abxi problems;
Balance, speech, tremors, swallowing, walking, 'cogfog', fatigue. LDNi 3mg 3 years, PEG tube 2 years.
Currently on 200mg Doxyi, Azithromycin, a bucketful of supplementsi and just starting third metroi pulse
Skin is the largest organ. Makes sense that it's infected, too. Loads of us had itching, spots, tiny red dots... you name it. ;-)
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
Thanks Mackintosh. I guess I'm finding this a bit more nerve-wracking than I thought. I'll try and calm down a bit.
Wife (spmsi) pre abxi problems;
Balance, speech, tremors, swallowing, walking, 'cogfog', fatigue. LDNi 3mg 3 years, PEG tube 2 years.
Currently on 200mg Doxyi, Azithromycin, a bucketful of supplementsi and just starting third metroi pulse
No, it's understandable that you're a wreck. Her future and well-being are in your hands and you're trying to be as responsible as possible. Ask DW how that felt. ;-)
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
I'm finding it increasingly traumatic to subject L to this - I keep wondering whether I am doing her permanent harm, particularly as the dosage drop hasn't changed anything. Everyone has been so kind and reassuring but I didn't a reaction of this severity. For anyone else considering this treatment, I'm sure this is not the norm - don't let this put you off. But for us, I'm not sure we can do it much longer without some signs of improvement. Maybe it would be best to stop the treatment, leave it a couple of weeks and start again on a very small dose maybe 50mg.
Does anyone know how long doxy takes to clear the system so I can isolate the effects from anything else that may be happening?
Or would it be better to press on at 100 or 50mg and start the azithromycin to protect against chest infection?
Wife (spmsi) pre abxi problems;
Balance, speech, tremors, swallowing, walking, 'cogfog', fatigue. LDNi 3mg 3 years, PEG tube 2 years.
Currently on 200mg Doxyi, Azithromycin, a bucketful of supplementsi and just starting third metroi pulse
50 mg a day is too little: resistance might develop. Have you tried using steam to clear L’s throat? Try covering her headwith a towel while she breaths it in.................Sarah
A Journey through Light and Shadow
True to form, literally minutes after I last posted, L spoke to me!
Very croaky and quite confused but she spoke - and coughed. So, all being well tomorrow, we will continue with the 100mg rate.
My nerves are totally shot.
Wife (spmsi) pre abxi problems;
Balance, speech, tremors, swallowing, walking, 'cogfog', fatigue. LDNi 3mg 3 years, PEG tube 2 years.
Currently on 200mg Doxyi, Azithromycin, a bucketful of supplementsi and just starting third metroi pulse
You can do this. You can do this. You can do this. It is an adventure that has so many mind-bending turns and frights that you will go through and next time you will probably be rescued at the last second again.
Having said that, not everyone has such a hard time as your dear wife. My first year was apparently much like it, but my cough or fifty years is gone and my consciousness was never as profoundly mired as your wife's. But the awful fog of those early abxi years is also gone and I can think again. I say over and over at this point that it was worth every bit.
Rica
3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan In for the duration.
Hi there,
I don't know if this will helps you but I can let you know from a very weak patient's experience 3 months in. I could walk/talk etc ok before I started this, but my problems are severe nonetheless and very debilitating for someone who's been ill since turning 20.
When you mentioned, "...the last few days in what appears to be total exhaustion. Not properly sleeping, eyes watery, salivating for England, just looking straight through me and unable to communicate in any way." - Now this is pretty much what has been happening to me for the last week or so, to the point of collapsing and circling unconsciousness for hours at a time. I end up contorting my limbs and chewing my tongue it seems, quite freaky and very unsettling stuff. Terrified me. I have dropped my doxyi down to one 100mg/day and the normal Azithro. I am still itching like fury, still haven't regained the side of my body that dfisappeared, and am still fluctuating between disconnected zombie and determined to remain chirpy - BUT I am just about coping with it (at the moment) rather than makng my poor mother worry about whether to call an ambulance.
Obviously I am not yet over it but just to let you know it sounds oh so familiar, and this week I am having a liver test done to see if my liver is ok or causing the itching by going haywire (because I have scratched my head and neck raw!)
All my love to you and L, this is so very tough at this stage but by the power of the wonderful people here, we might just win the fight for our lives and mobility. But as many here say, it's a real war and the longer someone has been ill, the stronger the opponent. Take heart, I think you have seen some heartening things happen to L - and I can only hope I might see some chinks of light soon too :)
M.S/CFSi '00, CAPi 02/12. Doxyi, Azith, Metroi, Naprox, NACi + every supp under the sun + Myhill methyl'
This morning, in a moment reminiscent of the Singing Detective, L whispered something I couldn't get. She beckoned me closer but instead of the expletive in the Singing Detective, she whispered "F1". She wanted to know what the result of the F1 Grand Prix was. She drifted back off to sleep when I went just a bit too far with my excitable rendition of the event - but I'm afraid that probably says more about me than L's current state! She is on the mend again. I had been babbling on to her about the race yesterday when I thought she was unconscious but obviously, she had taken it in.
This place is full of incredible people. I hope I can pay back the compliment one day.
Sarah - now that L is regaining her cough reflex, I will try to give her the steam treatment, thank you.
Rica - you are quite right. This is an adventure in the true sense of the word - along with apparently real dangers. We do have those early improvements to motivate us and I think things might be a little easier now that we have had a bad spell with subsequent improvement (fingers crossed!). Your encouragement is wonderful.
Interrupted - I don't believe you are 'weak' for one moment. To be able to help in this way while emerging from a similar scenario shows a strength that puts me to shame. The limb contortion is spot on - L's hands are very twisted and her back is arched. I wouldn't have believed she had the physical strength she is showing at the moment. Everything is rigid. Then occasionally, everything relaxes and she is back wiith me. L was only diagnosed with MSi in 2004 but we do suspect she may have had indications back in the early '80s. The biggest contribution to her current level of disability seems to have occured in the first 3 or 4 years, when she was RR, and on Copaxone. In recent years, her Liver Function Tests have been persistantly derranged (high) but interestingly, during the first few benign days of CAPi, she had a routine test and they were much better - still highish, but better. The itching sounds very difficult - if I could knit, I'd do a pair of mittens for you! In a way, we have been lucky in that some light was shone on L's situation before the bad patch started. I'm sure it will come to you, too. All our love back to you and it's my turn to say "hang on in there".
Wife (spmsi) pre abxi problems;
Balance, speech, tremors, swallowing, walking, 'cogfog', fatigue. LDNi 3mg 3 years, PEG tube 2 years.
Currently on 200mg Doxyi, Azithromycin, a bucketful of supplementsi and just starting third metroi pulse
It's all very odd and interesting. The last two days since 'F1 day' had been about slow progress. L had been talking - in a whispering gargle - sometimes lucid and sometimes confused, still tense and dribbly but certainly improving. I got her out of bed and onto the sofa yesterday afternoon but she became so sleepy by 6pm that I decided to get her back to bed before she got so limp that I couldn't move her. She slept through the evening but I'm afraid I disturbed her when I went to bed. She opened her eyes and said, in a clear and steady voice;
"Where have you been?"
"er... Pardon?"
"Where have you been?"
"Watching Jools Holland. I put you to bed at 6. Don't you remember?"
"No! Why is the light on?"
"It's been on every night since we started the treatment - so I can keep an eye on you. You do know you've been 'out of it' for the best part of two weeks?"
"You're joking!!"
It was like someone had flipped a switch. She was completely back with me. She can remember some details of what happened but not the 'overview'.
She now has a completely different demenour. Breathing more deeply, coughing better and masses of smiles. Not quite back to her base level but nearly. And of course we have useful fingers and toes now. Did I sleep well. From the most stressful day of my life and almost giving up the ghost on Sunday - encouraged to carry on by the wonderful people on this site - to the intense high of knowing for sure that L was mending and hopefully improving her base level. It's even sunny today...
This certainly is a war. We have provoked the enemy and despite a viscious onslaught, have seen that he is vulnerable. We seem to be winning the first small skirmish. Without the help of you lot I might have stopped! Thank you. In times of conflict, we need allies for support and intellegence.
We are almost ready for the next battle now! - but it would be more sensible to review and consolidate our position. Know your enemy. We do now. It's definitely CPni and now we have the strategy and armourment (thanks DW), support and intellegence to deal with him.
Rica, you said this was an adventure and with these sorts of highs and lows it certainly is. But after 8 years of occupation and oppression, we could use a little adventure!
Wife (spmsi) pre abxi problems;
Balance, speech, tremors, swallowing, walking, 'cogfog', fatigue. LDNi 3mg 3 years, PEG tube 2 years.
Currently on 200mg Doxyi, Azithromycin, a bucketful of supplementsi and just starting third metroi pulse
This is so familiar - right down to the unspoken "When am I?" I am still missing about a year and a half of memory that I suspect I will never clearly remember - if I find it at all. To which I say - so what and who cares! I am walking around breathing. L is fighting off the alternative now.
My diagnosis also came in '04, but I, too, can now see that my beginnings were in the early 80s. Your posts are fascinating. L will one day absolutely love reading about herself, I think. And thank you for doing this for her. I speak from the position of one who has been there. It is probably better that we don't remember everything.
Rica
3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan In for the duration.
Your tenacity is amazing, NC.
There are similarities with Sarah’s treatment. Sarah had the ‘insouciance’ and mental disturbance seen in very aggressive MSi. On starting doxycycline this became worse; I was afraid — it took some nerve to continue with antibioticsi. For the first fortnight Sarah fell into a muttering delirium, asleep much of the time. And then she suddenly woke up in her right mind, if weak in body. And that was the end of the progression of her MS. There were a few worrying times when she felt strange feelings in her limbs, but these were not relapses, rather new neural pathways finding their routes. I say this with some confidence because they were always followed by big improvements. It wasn’t long before Sarah calmly reached over, took back the reins of the household and started telling me what to do. . .
I wrote to a Cambridge neurologist to tell him of improvement with antibiotics. He is the editor of the Journal Brain. He wrote a polite letter in reply, but I heard no more. But then his research is funded by the makers of alemtuzumab.
Interestingly, alemtuzumab was found to reduce the relapse rate in RRMSi. However, in SPMSi progression continued unchecked with unrelenting cerebral atrophy. The authors of this paper speculate that there is a window of therapeutic opportunity. [The window of therapeutic opportunity in multiple sclerosis: evidence from monoclonal antibody therapy. Coles AJ, Cox A, et al. J Neurol. 2006 Jan;253(1):98-108.] Actually, a chronic infection with a commonly encountered micro-organism would account for this scenario much more fully.DW - I heard from our gp today - he had written to L's neurologist enclosing some of the science behind CAPi. The response was that he had never come across abxi therapy for MSi and wouldn't be recommending it. What do these people do in their spare time? They obviously have no interest in their work. Our gp said there was no evidence - anecdotes were not evidence. My response was that all of us (even scientists) believe who we choose to, unless we have our own personal experience to guide us. Deaf ears, I'm afraid. Science is often not very logical.
If we could get half of the benefits that Sarah has achieved, we would be thrilled. I would - I hate housework!
You mention my tenacity. I can't begin to appreciate what you went through with no support system - just your own conviction. I would have failed.
Wife (spmsi) pre abxi problems;
Balance, speech, tremors, swallowing, walking, 'cogfog', fatigue. LDNi 3mg 3 years, PEG tube 2 years.
Currently on 200mg Doxyi, Azithromycin, a bucketful of supplementsi and just starting third metroi pulse
Ah! An Anecdote!
I wonder how many doctors who use this word know what it means? Well, it’s from the Late Greek and means unpublished.
There are many publications linking MSi and C. pneumoniae infection, as I list on my web-page: they are also collated in the peer-reviewed scientific literature. Evidence comes from different directions and is thus triangulated; the strongest kind of evidence.
The problem seems to be that the ethos of medicine is changing. Until recently you had a certain clinical freedom — provided you could justify your approach. This is vanishing. The attitude is more that you should practise medicine according to national guidelines, typically those laid down by N.I.C.E. in the UK. And the trouble is that once people are hooked on guidelines they feel exposed if they don’t get them. Thinking for yourself is not encouraged.
One of the posters on this site refers to such a mentality as “cookie-cutter medicine”. It’s a pity; I guess it’s all part of the micro-management culture which seems to rule these days: and that is due to IT getting into the hands of those who don’t know how to use it.
With Sarah I wasn’t going to wait for the results of the thousand-patient double-blind multicentre trials and subsequent meta-analyses and the resulting debates and subsequent recommendations by that elephants’ graveyard of medical therapeutics, N.I.C.E.
NC, I hope all goes well for you and L.