Submitted by Nessabear on Wed, 2006-05-31 18:44

I intend to start a blog here so that I can look back on it with an objective eye in the future. I find it is easy to forget exactly what was going on with the ms at the same time last month, let alone last year, so I am hoping that the blog can pick up the slack from my memory. I am going to add blog entries with a history of my symptoms and significant events, then add day-to-day entries with details of treatments and how I am feeling. I think this will be especially important once I start the antibiotics.I thought I'd put my blog on cpnhelp in case it is of any use to others, though I suspect it will be excruciatingly boring! I want to include a description of some of my day-to-day activities so I can look back and see what I was physically able to do. Here's hoping that I will be able to do more rather than less in the future.Thursday 1 June 2006Well, today is the first day of my blog, so I'll start with a few things to give a baseline of where I am at the moment.Current MedicationCopaxone (daily subcutaneous injection)Ditropan (oxybutynin) 2.5mg twice a dayCurrent SupplementsAloe Vera Juice (Bioglan brand 40ml)Cranberry tablet (10g)Fish Oil (3g)Evening Primrose Oil (3g)Cod Liver Oil (275mg)Vit C (1g powder)Vit E (500IU)MultivitaminGlucosamineMetamucil (1.5 tsp daily)Current Mobility AidsWheelie-walker (for use in the house)Walking Stick (for small distances, for example, when walking from front door to the car)"Little Red" Scooter (Pride, 4-wheel Go-Go for taking in the car for shopping trips etc)"Black Betty" Scooter (Shoprider for outside around home, in the garden, to the local park etc)How I'm Feeling TodayNot bad, considering Kai came into our room at about 3am and couldn't stop coughing. He comes into our room every night, but usually just climbs into bed and goes to sleep, but he can't seem to shake this cold. Gave him some Panadol and that seemed to help everyone get some rest. Up at 6.30am. Did the usual morning stuff, got Kai's breakfast, had mine with the supplements (which I've only just re-started in the last week or so -- I go through phases!). Had shower, got Kai dressed, stacked dishwasher, tidied up a bit. Right leg no different from yesterday. Still able to get around with the wheelie-walker and do things. No preschool today, which means I won't get a sleep, so will have to go to bed very early tonight!Friday 2 June 2006Kai awake at 5am as usual. I managed to convince him to stay in bed with me, have a cuddle and watch Nick Jr until about 6.40am. Annie and Vic came to stay last night so they can take Tig in to hospital for colonoscopy today. Kai very excited to have his Nonna and Poppee here, especially as he hasn't seem them for a couple of months.Annie amused Kai a bit this morning so I could do my Zen/Chi massage machine in peace and I even squeezed in a yoga session, which I haven't done for ages. Legs a bit wobbly, right one much heavier and weaker than the left (as usual) but generally not too bad. Leg actually felt a little less heavy than yesterday.Got Kai dressed and packed for preschool, put on a load of washing, stacked the dishwasher, dropped Kai at preschool (Vic drove - can't wait to get on with my driving lessons and hand controls for the car!). Right leg already starting to get heavier and dragging a bit more, so will have a sleep soon.Did my injection (forgot for a couple of days - oops). Had all my supplementsii. Ordered NACi and CoQ10 from the U.S. two days ago in preparation for starting Dr Wheldon's protocol. Due to see neurologist in a couple of weeks and will see G.P. after that. Hope they both decide to support me!Annie and Vic have taken Tig to the hospital and will be back later to pick up Kai and then pick up Tig. I seriously contemplated going out the front and unblocking the drain in front of the garage (it's been raining non-stop for about four days and it's overflowing) but by the time I did that, I probably wouldn't be able to walk back inside, so it's probably not the wisest thing to attempt when I am home alone (though of course it's the being alone that makes it tempting - I wouldn't even get out the front door if anyone else was here). Maybe I'll see how I'm feeling after a sleep and see if the rain has eased off at all. Grrrrrrrrrrr! I am trying hard not to feel resentful about the msi, but there are so many instances each day where I am reminded of how easy that sort of chore used to be and how I actually enjoyed being useful doing that type of thing. Will stop rambling now and maybe start another blog topic soon about changing perspective.Saturday 3 June 2006Today was the seventeeth anniversary of my first date with Tig! We have now been together for half my life! We had a huge day car shopping, so no rest for me. We had already organised to go out to Nikki's Old Fire Station Restaurant and Annie and Vic babysat Kai for us. We had a great dinner (as usual there) and Tig suggested we start the night by each talking about three things/events that we hadn't talked about or thought about for a long time. Of course, once we started we couldn't stop and we were often in hysterics remembering some of our experiences. I was very tired by the time we got home at 9pm, so straight to bed.Sunday 4 June 2006Another big day with no sleep and I forgot my injection again. Will have to set an alarm or something. My right leg was pretty heavy and dragging this morning, so it didn't perform well on the LIK (Leg Into Knickers) Disability Scale. We went out to Greenwell Point Chinese Restaurant for lunch, then on to Aldi and Woolworths for the dreaded grocery shopping. In amongst all that, the car yard was on the phone all day to Tig to try to get the sale (after I'd told the guy this morning that we had decided to stick with our car!). As it stands, they haven't rung back and their sale finished so it looks like that's not happening yet. It's the end of the financial year this month so I am anticipating that they might start dealing again in a couple of weeks. We'll see.I am pretty tired after such a big day, so will be off to bed early.Monday 5 June 2006Kai awake at about 5.30am. He had a bad night coughing, tossing and turning. He lasted only ten minutes in his own bed, so was with us all night. Cough still there this morning, but he is in good spirits, so not sure if we need to visit the doctor yet.Annie kept him company while he played Voodoo Vince so I could do my massage machine for ten minutes and do my yoga. I felt my legs were a bit more stable today, though of course the right one still very weak and uncoordinated. Couldn't do the stretching up onto my toes as I couldn't balance, had to use a chair. Had all my supplements and will get my injection out of the fridge NOW so I don't forget again. Annie and Vic to go home today. Kai and I off to playgroup - it is STILL raining, so playgroup will be very noisy in the hall as the kids won't be able to go outside. Michelle to give us a lift there and back. Tig will of course be on the phone all day, but I think the new world-wide role will be finalised very soon so his workload should finally start to ease a little.P.S. Forgot my injection again! Very tired after playgroup. Tig took Kai out for an hour and a half so I could have a sleep. Kai wouldn't settle in his own bed because the cough kept waking him up.Tuesday 6 June 2006Sleep-in until 6.15am! Took all supplements. Did injection. Tig took Kai to preschool. Leg still not good on the LIK scale - I can lift it up, bend it and rest it over my left knee, then man-handle it into my knickers. I remember this was happening around Christmas and definitely improved after the oral prednisone. No massage machine or yoga as yet today. Off for a sleep, Kai home from preschool at 2.30pm.Friday 16 June 2006Saw my neurologist today and talked about starting an antibiotic protocol. He was respectful of my decision and said he will be interested to see how I go. Talked about having more oral prednisone (which has helped in the past) and he is happy to provide scripts and says I could safely have a course about four times a year. Will leave that alone for now and give the antibiotics a go, hopefully for 12 months. I will see my GP next Tuesday to discuss with her.Tuesday 20 June 2006Saw my GP today. She is prepared to write the antibiotics scripts for me but they won't be covered by the PBS, so I have to call the chemist tomorrow and see how much it's going to cost. The GP suggested that if it is too expensive through the chemist, I could try Pharmacy Direct. The GP has noted in my file that I am aware of the risks of long-term antibiotic use and that this is my decision, rather than her suggestion. So, now I am just waiting for the NAC to arrive from the States so I can get started!Thursday 29 June 2006NAC arrived today from the States! Will take the first one tonight with dinner or wait until tomorrow morning with breakfast. Overnight may be best to deal with potential 'NAC flu' that many people have experienced. I have also been looking into cost of antibiotics. Could be quite expensive as 30 tabs of the azithromycin is going to be about $250. Some will be covered by health fund, but will have to check with chemist on quantities and whether she can fill the scripts so I can get the maximum back from my health fund or whether I will have to go back to the doctor to get the script re-written with different quantities. Don't intend to start until I have worked up to 1200mg NAC anyway, so I am guessing I will have a little time up my sleeve.I've been getting nervous about starting the antibiotics as I have been reading other blogs and stories about getting much worse before getting better. I am worried about upsetting the status quo I guess. We have managed to organise our lives fairly well around my current abilities and I am just a little worried about losing any of the functions I currently have, even for a short time. Tig suggested I just take it very slowly, building up to the recommended dosages in the protocol. I think this is the right thing to do, though I will have to consider whether or not this is the right time to start if I experience too great a setback I think. We'll see...Saturday 1 July 2006I started taking the NAC yesterday (600mg twice a day). I seemed to have a bit of a runny nose, but everyone here is coming down with colds, so I can't tell if it's actually the NAC or a cold on the way. Nothing much else to report. I spoke to the chemist again and she has told me the most cost-effective way to get the azithromycin is in lots of three (cost about $75) which means I will pay the first $30 and get $45 back from the health fund. I will have to go back to the doctor to get the script re-written though. I may ask her about roxi instead...Also added the following supplements (which arrived from the US with the NAC):CO-Q-10 200mg one tablet dailyAcetyl L-Carnitine 400mg with Alpha Lipoic Acid 200mg one tablet dailyTuesday 4 July 2006Rotten cold! Tig, Kai and I all have it in differing degrees. My throat (as usual) seems to be the main target of attack. Kai's cough is bad again and Tig's stuffed up and very achey - not good for a trip to Dublin this Friday. Still taking the NAC (though actually forgot last night). Will continue taking it for a full week before upping the dose to 1200mg twice a day. Although in some ways I should probably do it now -- if I have a cold anyway I won't notice a bit of NAC flu if it happens!Am expecting all the ms symptoms to get worse as they often do when I get a cold. My legs are pretty stiff this morning and a little heavier than usual I think. I'm leaning on the wheelie walker more and dragging my right foot a little more too.Friday 7 July 2006One week on 600mg of NAC twice a day. Cold still pretty bad. Tig to Dublin today. Annie to stay and babysit me and Kai.Saturday 8 July 2006Upped NAC to 1200mg twice a day.Sunday 9 July 2006Cold slightly better, but still stuffed up. Feel pretty good "underneath" though, which is a good sign. Will keep steaming my head to get rid of the stuffiness and hopefully will be rid of the cough soon. Will see the doctor this week to get Azithromycin script re-written for lots of 9 tablets, which cost $75 (most economical way to go as I will get $45 back for each script from health fund).Saturday 15 July 2006What a horrible week! Kai and I were coughing and sneezing, not sleeping much. We started to feel better by about Thursday, but we kept our appointments with the doctor just to check that all was OK. Kai has a bit of congestion, but no sign of it on his lungs, which is what I was worried about. I also got my Azithromycin script re-written and a script for Doxycycline too. Both are with the chemist and they should arrive Monday.Poor Annie has had a pretty long stay looking after two sickies. Tig is home tomorrow. Hooray!! We have missed him like crazy, as usual.Monday 17 July 2006Started Azithromycin today. Took 250mg (cut 500mg tab in half) after lunch.Tuesday 18 July 2006Woke up to empty bladder about midnight and felt a bit nauseaous for about 15 minutes. Could have been the Azithromycin or maybe just got up too quickly, which has happened before. Felt pretty good in the morning, though leg dragging slightly more than usual and the burning sensation in my feet a little more pronounced. Could be antibiotics I suppose, but just as likely the result of a big day with no rest yesterday.Wednesday 19 July 2006Added "Inner Health" acidopholus tablets (one per day) to regimen.Friday 21 July 2006Woke up with some itchy patches of small, red, rash-like dots, mostly around my waist and lower back where the band of my pyjamas touched my skin. Azithromycin?? Tig thought it was unlikely to be an allergic reaction so long after taking the last tablet. Posted a forum question to ask others about it. Slightly worse after a shower, though seemed to get better as the day wore on. Had the Azithromycin 250mg tablet at about 4pm.11am: had my regular remedial massage and mentioned the skin itchiness to my massage therapist, but she didn't think it looked too bad on my lower back (she knows my back very well now after massaging me fortnightly since January 2005!).My right leg was heavier and I had more severe foot-drop than usual all day. After the massage we tried a new noodle place and I had to walk a fair way from the car (for me anyway, probably about 100 metres) and the going was very slow. Walking stick on one side, Tig's arm on the other. Unfortunately it was raining so couldn't use the scooter.I think it's time to add some more boring descriptions to my catalogue of symptoms! There are a few things I don't think I've mentioned before and I suspect they are flaring up a bit due to the Azithromycin.

Burning skin

The "burning" sensation in my hands and feet is more noticeable than usual and it has spread up my shins and thighs. Unlike Mum, this has never been a big problem for me and it has always felt like a cross between the tightness of sunburn and the stinging you get when you touch a stinging nettle. It is most obvious when I wake up in the morning, but mild enough to settle back into the white noise during the day.

Skin sensitivity and spasms

For some time now, I have been getting spasms that seem to be triggered by sensitive skin, mostly on my legs. For example, when I pull on my track suit pants, sometimes as they go over my skin, my legs will spasm a bit. This seems to be more pronounced in the last week and I am even getting a few spasms when the water in the shower lands on my back. I don't usually compare myself to a dog, but it reminds me of when you scratch a dog behind the ear and his leg involuntarily twitches!Tuesday 25 July 2006The itchy patches around my waist and lower back are nowhere near as 'angry' today. They definitely get worse with heat, for example with hot water in the shower or if I am too hot in bed, but apart from that, they are ok. My right leg is still quite heavy and dragging, but then it's also been three days with no proper rest during the day. Kai is back at preschool today so after a few more 'life maintenance' bits and pieces and a bit of paperwork, I'll try to have a long sleep before we pick him up at 2.30pm.My previous neurologist is interested in the abx treatment so I have just printed out a copy of David Wheldon's pdf file and I'll write a letter for him too. Maybe I'll suggest he get himself online!I was thinking about the increased skin sensitivity and burning in my legs and feet and looking back, I have realised that these are old symptoms, perhaps recurring due to die-off now that I've started the abx. I can't remember exactly when it was, (sometime during 2001) but I do remember that we went camping and I couldn't go walking because my feet were too sensitive to stand having my shoes and socks on for long. I need a relational database to keep track of my symptoms! Maybe I can convince Microsoft to develop one. Of course, it would have to be called MS Symptoms! Hahahahaha.I intend to start the doxycycline next week. I will have been on the Azithromycin for two weeks then and as long as there haven't been any major problems, I think I'll be fine to go ahead. I did ask my GP if she wanted me to see her again before I started on the doxy, but she didn't feel there was any need and gave me both scripts when I last saw her. At the risk of starting another heated debate, if I do experience any problems, I will post another forum question!Thursday 27 July 2006Just wanted to mention while I think of it that the tingling in my spine when I drop my head forward seems to have stopped since I started the azithromycin (I know this tingling has a specific name, but I can't think of it at the moment). I am very aware of this symptom as I usually experience it every time I pass urine (as I have to look down while using the catheter). It seems to be gone!I also wanted to make note of my skin reactions. I have been breaking out in pimples on my back and a little on my face too. Not squeezable, teenage-type pimples, just red blemishes really. I always get this type of reaction whenever I have prednisone too. I will be interested to see how this responds to the introduction of doxycycline next week.Tuesday 1 August 2006I started the doxycycline yesterday (100mg) and felt OK, but after the tablet this morning, I felt a bit nauseous and I have a metallic taste in my mouth, which is also a bit dry. My right leg was more heavy than usual, especially getting out of the shower, so it did very poorly on the LIK disability scale! I lay down for a while after my shower to recover a bit. Now that the grocer has been, I'll have some water and sleep for a while (thank goodness Kai is at preschool today). Everything else will just have to wait.Thursday 3 August 2006Yesterday much the same as the day before. Kai was at preschool so slept most of the day until Tig picked him up at 2.30pm. Feeling a fair bit better today. Forgot to mention the visit from the candida beast. Took a Diflucan tablet yesterday and feel a little better in that respect today. It's the first time I've tried the tablet rather than the cream, which is just not feasible with the catheter -- way too messy! I should also note that I passed a little urine twice today without the catheter, which hasn't happened for a long time. Maybe a small step forward, maybe just a very full bladder, who can tell Neal? Hate writing about all that stuff, but I know I should because in the future I will want to look back and see how the bladder was behaving.I have had a lot more energy today. I took Kai and Scout for a long walk (me on Black Betty of course!) to the play park and to the Bog of Eternal Stench. I can get the scooter along a bush path and up to a beach look-out thanks to some very thoughtful planner who added some boardwalks. It would be nice to descend the steps onto the beach...maybe again one day. I thought Scout had hurt his leg, so we dropped the scooter speed right down on the way home. He is crashed out on his lounge now, so at least we know he had a good bit of exercise. Had some lunch and emptied the top layer of the worm farm and added some potting mix to a big pot that has been waiting for a plant since Christmas! In amongst all that, unstacked/restacked the dishwasher, cleaned the kitchen and tidied up a bit so the cleaner could get around (unfortunately she couldn't make it today). Still don't feel too wrecked either.I am still getting a metallic taste in my mouth from the doxy and my tongue feels a bit thick. Have definitely been more thirsty than usual, which is good because I know I don't drink enough water.The Copaxone nurse called to today to check how I was going and I told her about the hard spots and shadow bruising at all the injection sites and about the hollows that seem to be forming on my thighs. She said that I should stop injecting into the thighs as the hollows indicate that all the subcutaneous fat is gone and the Copaxone may not even be going in anymore. She is sending a 'body map' of injection sites so that Tig can do a fat search on me for more appropriate spots to jab myself! How romantic.Monday 7 August 2006A few things to note while I think of them. I have a patch of sensitivity on the right side of my back that runs from the bottom of my shoulder blade to about my waist. Sometimes it feels cold and sometimes just 'sensitive'. I haven't had this there since I was first diagnosed when it covered most of the right side of my torso (front and back) and then spread down my leg.The itchy patches across my lower back and around my waist that looked like a rash are slowly disappearing and are not so itchy now. I am still getting generalised itchiness on my arms, back and side of my face, mostly due to heat, especially hot water in the shower.On the up side, I am now able to lift my right leg with the knee bent so that my thigh is parallel to the floor and hold it there for about 10-20 seconds before it starts to descend of its own accord. This is strange for two reasons: firstly, I haven't been able to do this since I had a course of oral prednisone at Christmas; secondly, it doesn't seem to have helped my walking much at all. My leg behaves a bit better on my LIK disability scale though, which is good news when I get out of the shower. Generally speaking, the weary heaviness that usually assails the lower half of my body after being up and about for while doesn't seem quite so bad.Today was the worst day so far for nausea. I felt too ill to take Kai to playgroup so Tig took him while I stayed home. I broke my Swank diet to eat some plain biscuits, but I had to have something in my stomach other than the fruit I'd eaten for breakfast. May have to look into the charcoal to help with that. I feel a lot better tonight and tomorrow is a doxy day without the azithromycin, so it shouldn't be so bad.Monday 14 August 2006Seem to have sorted out the nausea issue, just by not overdoing the liquids in the morning and eating enough at breakfast. My right leg is overall worse though, which is a little annoying. It has gradually been getting heavier and the right foot-drop is worse so I am slower than ever getting around the place. I can still lift the leg up with the knee bent, but my walking is not improving and my stamina seems to be worse too. I am getting tired more quickly than I was.Tomorrow I get my wisdom teeth out; not looking forward to that! I noticed that the patient info here on doxycycline warns about combining it with anaesthetic so I will make sure I mention it to the anaesthetist (have already spoken to his nurse and the nurse at the hospital!). The oral surgeon wrote to my neurologist to ask about the best way to remove the teeth and he suggested that all four at once under general anaesthetic would be preferable to one at a time under local as there is no evidence to suggest that it will impact on the ms. Let's hope he's right!Saturday 19 August 2006Still here, minus four pesky teeth. My mouth is quite sore and I am still taking the painkillers every four hours. I missed my antibiotics and all supplements Tuesday, Wednesday and Thursday but started them again Friday. Just for the record, the anaesthetist said that they haven't used the contra-warned anaesthetic (Methoxyflurane) for 30 years in Australia, so there was no need to worry about conflict with doxycycline.With regard to overall health, I feel very tired and my right leg generally feels worse (heavier, stiffer and dragging more) but of course probably not a relapse as such but a response to the dental surgery. The pins and needles/burning sensation is a bit worse in both legs from the knees down and the cold/sensitive patch on my back has spread a bit down my side and waist and a little onto the right side of my stomach. The itchy patches from the abx are not really itchy any more and they are fading a lot but the skin is a bit flakey, like I've had some random little patches of sunburn that are peeling.I think that's it for now. I am never having my wisdom teeth out again. Ha ha.Thursday 24 August 2006Upped doxycycline to 200mg per day.Friday 1 September 2006Feeling like I am back to 'normal' after the wisdom teeth. Had one of those random stints of being able to walk around the house completely unaided for a little while (about 20 minutes?) yesterday. Heartening and disheartening at the same time. Why does it happen? Why won't it keep happening? Oh well, I guess I just have to live in the moment and enjoy those few steps of freedom. And now, it's back to the wheelie walker...Today was without a doubt the most glorious first day of Spring that I can remember. Tig and Kai went out on the boat (they are still there at 5.45pm) and I took Scout for a walk (me on Black Betty of course!). I picked some wild freesias (my favourites) and watched the Bay for a while; it was like a lake! What a beautiful day and evening...Monday 4 September 2006Saw my GP to get script for flagyl and for medical form for travel insurance.Thursday 7 September 2006Travel insurance won't cover the ms. Just have to hope that I don't have any ms-related issues that will stop us travelling next April!Monday 25 September 2006Still haven't started my first flagyl pulse as I haven't had a suitable day. We've had lots going on and I haven't been able to risk sudden 'down time'. Maybe this Wednesday...A general update: the original excema-type patches on my skin are still there, but fading, while I have a few new patches, mostly still around my waist and lower back, and one on my left shin. Overall, my balance has gradually been improving. I can do short bursts of walking around the house without my wheelie walker (though I tend to keep using it as it is quicker than wall- and furniture-surfing and it is easy on my legs and back, but it's nice to know I can go a short distance without it if necessary). On the negative side, my left arm has been sore and weak for a week or so. This seems like a new symptom, which always makes me a bit nervous.On a more exciting note, we went up to join the sailing club for Tig and Kai on Saturday and discovered that there is a Sailability group there, so I will be able to learn too. They have a special boat that pretty much can't capsize and a sling-type seat, so the comfort and balance issues that I assumed would stop me from joining in are both taken care of! We are so very lucky to live where we do!Wednesday 27 September 2006First Flagyl PulseTook my first flagyl tablet after breakfast about 45 minutes ago. Feeling a bit off on the stomach and a bit spacey in the head and quite tired, but I was already feeling manky today, so maybe just a continuation of that! I've been so nervous about taking the flagyl becaues I really don't want to feel rotten and lose any of the functionality I do have, but I know it has to be done! I've read other blogs and forums and that has given me confidence to know what to expect and that it should all be worth it in the end. I will take another tablet after lunch and one after dinner, but that will be it for the first pulse. Tig has taken Kai to preschool so I will resist the urge to 'do' and go straight back to bed I think.Thursday 28 September 2006The second and third flagyl tablets yesterday went pretty smoothly. I woke up at about 1.30pm yesterday and felt a lot better, so whether it was the flagyl making me feel off or just regular fatigue, I don't really know. I managed to function 'normally' for the rest of the day.Unfortunately Kai woke during the night with an ear ache, so I didn't get a lot of sleep last night. As a result, I was more tired than usual today and my back was quite sore. My left arm and now hand are sore too. Not to the point of stopping me from doing things, but my arm feels very heavy when I lift it above my shoulder, for example, when washing and brushing my hair.I am glad that the first flagyl pulse (small as it was!) is over and nothing drastic occurred. I feel much more confident and positive about the next one.Sunday 1 October 2006Three months into the protocolIt's been three months since I started taking the NAC and I feel as though I have had some improvements already, especially after the first flagyl pulse on Wednesday this week. I had a great day on Friday with my balance and walking definitely a little better and walking from the front door to the car yesterday was the first time for ages that I didn't need to lean really heavily on my walking stick.  I didn't start the day with the awful heaviness from my waist down, which was a welcome result. I'm also taking more short walks around the house without the wheelie walker (still hanging onto walls here and there of course!). I am trying not to get too excited but my hopes are threatening to bubble up and out of me all the time. Could these antibiotics really work for me as they have worked for others? I am just so wary of expecting too much in case for some reason it doesn't work. I'm keeping my fingers crossed in any case!Tuesday 3 October 2006Very nauseous and dry-retching this morning after breakfast of fruit. The antibiotics and/or supplements really don't seem to mix well with a whole meal of fruit! I will stick to my usual Weet-Bix from now on.I am still getting around a little better, but I am expecting too much too soon and have had a few trips as a result. I haven't actually fallen over, but would have if I didn't happen to have a bench or wall to grab onto. I think I will stop testing out my walking for a while.Big day today as school holidays are on so there is no preschool on Tuesday and Wednesday this week or next. Kai went to play at a friends house for a few hours, then I picked him up on the scooter and went to another friend's place for a few hours. Well and truly ready for bed tonight!Wednesday 4 October 2006Another big day with no preschool and therefore no sleep for me. We did a few things at home then went grocery shopping in the afternoon.Thursday 5 October 2006Kai and I went up to the shops on the scooter then hung around at home while Tig had a sleep (he has lots of meetings until around 2 or 3am most mornings at the moment). After lunch, Tig took Kai around to Michelle and Graydon's for a swim so I could have a sleep. Had a lovely rest until about 5.30pm, then up for dinner and some T.V. Was considering starting another flagyl pulse tomorrow, but have decided to wait the three weeks.Friday 6 October 2006Nanna's liver has started to fail so she was admitted to hospital last night and she will likely go into the palliative care hospice when her condition has stabilised. We will go to Sydney to see her as soon we can. I will speak to Mum in a couple of hours to get an update.Friday 13 October 2006Wow, so much can happen in a week. Nanna is so much better, thank goodness. The doctor was surprised she made it through last week but now the prognosis is far more positive. It wasn't actually the cancer that was making her so sick, it was a gall stone. She has had an operation for this and is recovering so well that she may be able to go home in a few days. The palliative care doctor feels that she probably has at least a year and maybe more; it all depends on how rapidly the cancer grows and where. I have my fingers crossed for a miracle that will see the damned thing disappear altogether. We will be going up to see her for her birthday in two weeks and I am really looking forward to it.I have been very tired and my legs have been a little worse over the past week. Lots of factors at play here: we are at the end of the second week of school holidays, which means Kai is in preschool only one day per week instead of three, so few daily naps for me; it is really starting to warm up (over 30 degrees yesterday and the same predicted for today and tomorrow); I have been very worried about Nanna; Tig is preparing for a trip to New York on Sunday. So much going on and I guess it all takes its toll. My left arm is still weak and sore, although certainly not to the point where I can't use it. I just can't rely on the strength to be there when I need it and it becomes painful in certain positions. Nothing else of note I don't think. I am undecided as to whether or not I should start my second flagyl pulse while Tig is away next week. I think I will play it safe and wait until he is home.Sunday 15 October 2006My neighbour just saw me taking the rubbish bin out for collection and he came over to say that he hasn't seen me getting about so well for a while. His wife has ms so he knows what he's talking about! Just thought I'd note it here as it is always good to get a perspective from a third party. I am still not feeling as good as two days after the first flagyl pulse, but a little stronger than the past few days anyway. My left arm feels a little stronger, but more generally sore, if that makes sense. Thankfully the 36 degrees we had yesterday have disappeared and we are back to a far more comfortable 21 degrees today. Tig left for the U.S. early this morning, so it's just me and Kaidee for the week. It's our first time going solo for a whole week so I hope everything runs smoothly!Wednesday 25 October 2006A sad day today. Nanna passed away before dawn this morning. She was determined to make it to her 78th birthday yesterday and she did it. My dear sister-in-law Kaz at 8 months pregnant with our little 2-year-old nephew Lucas in tow went above and beyond the call of duty and drove down here to pick up me and Kai last Thursday (Tig was still in New York) so that I could see Nanna before she slipped into a coma. My brother Nic and I visited her last Friday and though she was fading, she opened her eyes enough to know we were there. On Sunday, Tig, Kai and I saw her and said goodbye for the last time. We told her we loved her and she managed to communicate her love back to us. I know she is in peace now, up there with Pa listening to jazz music and painting away but that still doesn't stop the tears.Friday 27 October 2006Second Flagyl PulseI started my second flagyl pulse on Monday this week, though with all that has been going on I only ended up taking one tablet but on Tuesday, Wednesday and Thursday I managed three tablets each day. Felt a little queasy but nothing too horrible. I rested a lot while Kai was at preschool on Tuesday and Wednesday. I really needed it after the physical and emotional drain over the weekend.Symptom-wise I seem to be holding fairly steady. I have been a little stiffer than usual in the mornings and both feet and lower legs have been burning more. My left arm is still weak and sore in some positions, but a little better than it was. I am hoping for a post-pulse burst of goodness to get me through the next few days though. We are going to head up to Mum's as she is not coping too well with Nanna's passing, or rather, with the lack of closure. We found out from Aunty B that Nanna didn't want a funeral or even anyone to attend the crematorium. I think Mum has gone into a relapse as she told me her walking was quite bad yesterday.Friday 24 November 2006Third Flagyl PulseI started my third flagyl pulse this Monday (20 November 2006). One 400mg tablet three times a day (just two today as I forgot my lunchtime one). I've been a bit queasy like last time but it's not preventing me from doing things. My arms and hands are still a bit sore, but better than they were I think (the increments are so small I sometimes have trouble telling). I am still having difficulties opening lids on jars and bottles and sometimes get pain in my left elbow when lifting items out of the fridge or pantry. I can still lift Kai up onto my lap on the scooter (he weighs about 16.3kg now) but I wouldn't want to be doing too many reps!My massage therapist said today that she thought my right leg looked a little freer when I walked in (using the stick) and the muscles were not as tight as usual. We got a spa and I think that has helped as I can stretch better in the hot water (I can barely walk when I get out thanks to the heat, but once I've cooled down again my walking does seem a bit easier).Sometime over the last month the vision in my right eye was a bit blurry, and again today (though I think that was a result of lying face down on the massage table as it seems to have resolved now). Just wanted to mention it for future reference.Wednesday 6 December 2006I just read a blog post by Rica which has really helped strengthen my hope. For some reason I didn't sleep well last night and I started to be assailed by doubts about whether or not the protocol can work for me. I have no doubt it has worked for others, but a nasty little gremlin of negativity crept in and started to make me wonder if there is something in me that will prevent it from having the same wonderful effect. My neurologist said he wouldn't be surprised if one day soon the research shows that ms is actually a combination of a number of different diseases. What if the particular combination in my body contains a 'something' resistant to the antibiotics? What if it just doesn't work? When I started the protocol I said "I hope it helps, but I'm not expecting it to" but I think I was just trying to convince myself not to get my hopes up. Being a 'glass half full' type of person it's hard not to hope and expect the best, which is probably one of the most difficult things about having ms, particularly in the relapsing/remitting phase. I never really expected that my disability would progress as I truly believed that after each relapse I would go into remission. Even now the fear of one day waking up with an instant degradation in function is tempered with the hope of one day waking up and suddenly getting it all back. It's all overshadowed now with the 'secondary progressive' label that the medical establishment has painted on my sandwich board, but I am determined that my positivity will win out. I have no intention of giving up the protocol and I intend to send that nasty negative gremlin packing. Rant over.Friday 8 December 2006I forgot to mention that yesterday I really noticed an improvement in my hands. My fingers didn't feel as sore (better in the left hand than the right) although my left pointer is a bit sore again this morning. I would definitely describe the pain and weakness in my hands and arms over the past few weeks as a relapse and it now seems to be easing, which is positive. I will certainly mention it when I see the neurologist next Friday. He has said that even after being diagnosed as secondary progressive, patients can still experience relapses and remissions. I will also ask him about Tysabri as he thought it might be available on the PBS around Christmas and I should be able to switch to it from Copaxone if I want to.Emotionally I'm a bit worried about Tardy as she is off to Germany to pack up her things and has decided to spend Christmas alone in New York. I wish I could go with her as the break-up has hit hard, but she is a big girl now (21 this New Year's Eve!) and she feels this is something she has to do alone. Practically there's no way I could go with her, but it doesn't stop my protective big sister instincts kicking in. I'll just have to rest these fingers so I can chat and email the whole time she is away!Tuesday 12 December 2006Hands quite sore again today. Not much sleep last night as chatting to Tals for a long time. I'm really worried about her. I so wish I could be there with her to help her through this, pack her up and bring her home. I have a terrible feeling she is going to try to stay and I feel so helpless being so far away.I think the skin on my right foot is feeling a bit less sensitive than usual, though no real change in the heaviness of the leg and foot in general. It was very hot yesterday, but much cooler today, so that might help.Friday 15 December 2006Saw neurologist today. He feels I am fairly stable, compared with this time last year. He thinks I would be a good candidate for starting on Tysabri (switching from Copaxone) but the Federal Government in its wisdom has rejected the application to have Tysabri added to the PBS. This means if I want to try Tysabri at this time, it will cost me $40,000 per year. The neuro encouraged me to write letters to my local MP. It's on my admin list of things to do and pursue...Also had an ultrasound to check the lump (more like a ridge) in my right breast and the small lump in my armpit that become a little sore when I'm pre-menstrual. All OK according to the doctor at the radiology place.Monday 18 December 2006Fourth Flagyl Pulse Big weekend. Went to Sydney for Tig's work Christmas party for staff kids. Was held at Luna Park, so Kai had lots of fun. Stayed overnight in the city, did a little shopping, headed home on Sunday and stopped at the Nan Tien temple for lunch (great!).Playgroup Christmas party today and started my fourth flagyl pulse. Pretty tired by the end of the day! Hands a little sore, but not too bad.Tuesday 19 December 2006Finally, a day time sleep after three days without one. I'm not looking forward to the six weeks without preschool coming up over Christmas!!Wednesday 20 December 2006No sleep today unfortunately. Off to the Beach preschool Christmas party. The kids are performing a song on the stage, so Kai is pretty excited.Hands not too bad today. Still not 100%, but better than they have been.

Great start. Waiting to read more. Nice to have you presenting your story! 

Combined Antibiotic Protocol for Chlamydia pneumonia in Chronic Fatigue Syndrome & Fibromyalgia- Currently: 150mg INH, Doxycycline/Zithromycin, Tinidazole pulses. Northern Ohio, USA

Hey, not fair!  I was settling into my chair, ready to read beyond the move and someone neglected to finish the story! Image removed. More, please?

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

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 Jim and MacKintosh,

I really didn't expect anyone to start reading yet! I am experimenting with where to put what, so I will be editing a bit until I get it right. I'm going to move my history to a separate entry and add chronological stuff as I go so that I will be able to track it easily in the future. I guess I should also add an entry with my personal details so that everyone knows who I am!

Thanks for the support and I am sure I will see you around soon (and as soon as I get some more uninterrupted time, I will finish my history. At the moment, my three and half year old son is playing Crash Bandicoot on the x-box, but he is already trying to recruit my help, so that might be it for 'me time' for today!).

Vanessa :o)

Vanessa :o) On Wheldon protocol since July 2006 for SPMS (EDSS=6 to 6.5).

Welcome Vanessa,

Delighted to have you join us.  You have probably read some of our chapters and I hope you enjoy us as much as we enjoy an intelligent, hopeful contributor as you have already shown you are.  May your horizons expand daily!

Rica        EDSS 6.7 at beginning - now 2
Ignorance is voluntary bad luck.  Lauritz S.   A true Viking
If you come to a fork in the road, take it. Yogi Berra

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

We're like crows, Vanessa.  We swoop in on anything sparkly and your post was just that.  Welcome.  We'll still be here when you find time to add to your story!

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

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

Vanessa, Welcome to our community, one of the best things about it is that it is a truly global site, while most members are in the States, there are quite a few in Europe and Australia too.   I found the thought that I was not isolated gerographically quite comforting when I first became a member.

What a good idea to provide yourself and the rest of us with a baseline.   Maybe when you have more experiences to record Jim can put it into the patient's story section.

So you are going to give the Abx protocol a go.   Good for you.   My daughter Ella started a couple of months ago, and I started a month later.   She has RRMS and I have too many non critical ailments to list here.   We have both felt some benefits from the treatment, but it has been a rough ride for Ella in particular.   What has kept us going is the knowledge that nothing else will reverse the damage that has occured. 

It may be a good idea for you to have a look at Dr. David Wheldon's supplement's list and consider starting some of these before you even start the Abx protocol.   Ella found that N acetyl Cysteine, Vit D and Vit B12 were particularly effective.

We all joined this community as ugly (lame) ducklings, but we are now all on our way to becoming swans. 

Michele:  on Wheldon protocol since 1st May 2006 for a variety of long standing ailments, also spokesperson for Ella started Wheldon protocol 17th March 2006 for RRMS

Sussex, UK

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

Hi Vanessa,

My husband and I recently found this site and it has been a lifeline for us.  We are glad you found it too, and we look foreward to reading your story as your treatment progresses.  My husband is diagnosed with "early MS".  He will start the supplements David Wheldon recommends today, and he will begin the abx treatment soon.  

Alyson A.

 

 Hi Vanessa,

Welcome, glad you found the site.  I am new here too, been on protocol since 4/1 and was very happy to find this site.

 

On Wheldon protocol for MS since April, 2006.  LDN 2004

5oo mgs Ceftin 2 x/day, 500 mgs Zithromax, 500 mgs 2 x tini pulses,100 mg diflucan, 4.5 ldn; Wheldon protocol for MS April, 2006 to May 2008. 2008 MRI shows NO NEW DISEASE ACTIVITY, 2012 MRI no new disease activity.

Michele, Alyson, Wiggy: hello, hello, and hello! I was just thinking about my blog this morning and planning an entry about positive things that I have gained from ms so that when I am feeling low, I can read over it. When I write it, I will certainly be including a section about all of you wonderful people here. Thank you for your warm welcome and words of support. And thanks Michele for mentioning Dr Wheldon's supplements. I ordered my N-Acetyl Cysteine etc from the U.S. two days ago so I am very glad to hear that Ella found them useful.

Vanessa :o)

Vanessa :o) On Wheldon protocol since July 2006 for SPMS (EDSS=6 to 6.5).

Hi Vanessa, the tingling when you bend your head forward is called L'Hermittes syndrome and is an indication of spinal lesions.  I was starting to get it before  I started treatment, but it did clear up within a month or so, so although I am still working round what damage I had there, it hasn't got any worse.  You have done very well if it really has stopped that quickly, but at this stage, not even having started on doxy, don't be perturbed if it comes back for a while........Sarah, as at 31/07/06

 

Started the Wheldon regime in August 2003, due to very aggressive SPMS.  Moved to intermittent therapy after one year.  In May 2006 still take this, two weeks every two months.  EDSS was about 7, now less than 2.

An Itinerary in Light and Shadow  Berger.

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,

Thanks for that! It was driving me crazy that I couldn't rememer "L'Hermittes" -- I was searching on "lehrmit" and I just kept getting German web sites. Ah, the all-important apostrophe and a little transposing! I will hope that the tingling doesn't return, but I am feeling a little worse for wear in other aspects now that I have started the doxy, so I'll be prepared for anything.

Vanessa

Vanessa :o) On Wheldon protocol since July 2006 for SPMS (EDSS=6 to 6.5).

So good to read your progress, Vanessa!  How far you've already come! Keep it up!

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

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

Hope your extraction went well!

Ron

On Stratton protocol for CFS starting 01/06 (NE Ohio, USA).

RonOn CAP for CFS starting 01/06 (NE Ohio, USA)Began rifampin trial 1/14/09Currently: on intermittent

Happy Thursday, Vanessa!  You've passed the first post......Sarah Image removed.

An Itinerary in Light and Shadow  Berger.Started the Wheldon regime in August 2003, due to very aggressive SPMS.  Moved to intermittent therapy after one year.  In 2006 still take this, two weeks every two months.  EDSS was about 7, now less than 2

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.

Way to go Vanessa!

 

 

n Wheldon protocol for MS since April, 2006.  doxy 200 mgs daily, zithromax 250 mgs 3x/ week , LDN 2004

5oo mgs Ceftin 2 x/day, 500 mgs Zithromax, 500 mgs 2 x tini pulses,100 mg diflucan, 4.5 ldn; Wheldon protocol for MS April, 2006 to May 2008. 2008 MRI shows NO NEW DISEASE ACTIVITY, 2012 MRI no new disease activity.

SUCH good news!  And, perhaps, travel insurance won't even be an issue by the time you travel next year.  One can hope...

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

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

Ron, Sarah, Wiggy, Mackintosh: Thanks for the encouragement and support!
Vanessa :o)

On Wheldon protocol since July 2006 for SPMS (EDSS=6 to 6.5).

Vanessa :o) On Wheldon protocol since July 2006 for SPMS (EDSS=6 to 6.5).

Vanessa, the trouble is you are hidden away here and so have nobody to give you personal encouragement and reassurance, so it was lucky that Rica and her blog came along today.  I had only improved as much as I had at the six month mark because I way suddenly deteriorating so rapidly shortly before starting on the antibiotics, people who are as badly afforested as I was but who got there by a more gradual path will take longer to pull back, you must please remember that.  I had my spurt at first but now I have really slowed down.  I am still improving, but you can't measure it on a regular, week to week basis.  Now I have to suddenly realise that I am doing something I had difficulty with six months ago, but most of the time if I get a bit down, I have to remember that, well, I am not getting worse, which according to my neurologist I should be doing, if I was still around to get worse.  Rant way though, it does you good sometimes, but rant in public sometimes...............Sarah (Dec. 5th)

An Itinerary in Light and ShadowWheldon regime since August 2003, for very aggressive SPMS.  Intermittent therapy after one year. 2006 still take this, now two weeks every three months.  EDSS was about 7, now 2. United Kingdom.

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.

Thanks Sarah. I really appreciate your input and as you say, I should have a rant in public every now and then. I don't mind being hidden away here as I do like to use the blog mostly for 'talking' to myself (is that a sign of insanity? I ask myself...haha) and to keep a record of my progress for the future. Of course, if my ramblings can help someone else, that would be great too. If I had more time, I'd probably be ranting away in public areas of the site constantly! (Maybe when my little boy goes to school in 2008 I can spend heaps of time here telling everyone just how much better I am and offering others support in the same way you do now).

Thanks again.

Vanessa :o) 

On Wheldon protocol since July 2006 for SPMS (EDSS=6 to 6.5).

Vanessa :o) On Wheldon protocol since July 2006 for SPMS (EDSS=6 to 6.5).