Beyond Avonex and Valtrex

Tell us what you are using to treat your MS-- and how you are doing.

Re: Beyond Avonex and Valtrex

Postby Scott1 » Thu Aug 20, 2015 4:04 am

Hi,

Actually, I lie. There is a significant change in my soleus in two days which makes left calf feel completely different. It's a sense of stretch when I walk and it's particularly noticeable going downstairs. Walking has already taken on a different gait and the process of altering my stride is making me acutely aware how much I had favoured my right leg.
The advice was to use the left leg a lot to encourage the muscles to stretch and its more work than I thought it would be.
At the end of the day I feel like I have been in a rugged football game. Not wrecked but definitely sore as muscles begin to respond differently. I'm sure this is transitory and necessary to regain a more normal leg action all round.
I found the leg stretches in Pilates much easier with better range but it's a learning curve to improve the technique. The Baclofen influence on muscles will also be altered as the neurons keep dying off over the week. Both treatments will influence the amount of calcium released by the sarcoplasmic reticulum; The baclofen as a Potassium channel blocker will impede sodium entry into the cell which in turn will slow calcium release and the neuron die off prevents the release of acetylcholine, which triggers the calcium release.
Its very clear that this temporary solution can be a long term answer provide I take the opportunity to lengthen the contracted muscles.
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Re: Beyond Avonex and Valtrex

Postby Scott1 » Thu Aug 20, 2015 8:46 pm

Hi,

Just did my first rehab since the Botox. The difference is apparent to them. They stress I must use the window to stretch the muscles. In particular I need to do a lot of heel raises with bent legs so that the stretch goes into the soleus and not the upper part of the calf.
The stretch of the hamstrings was achieved by putting my leg on the shoulder of the physio with it quite straight. Then I pushed the leg down into his shoulder and then relaxed. As I relaxed he would push the leg further back to increase the range. Every muscle is behaving differently as change occurs. Some hurt, some feel fine.
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Re: Beyond Avonex and Valtrex

Postby Scott1 » Thu Sep 10, 2015 3:44 pm

Hi,

Sometimes you ask yourself how does it all fit together. What is a unifying theme? It may be a better understanding of Nitric Oxide. This video is a very good summary that is worth an hour of your time. There are little things that may generate debate but as a whole presentation it is excellent. It makes sense of many of the things we discuss by highlighting the role of Nitric Oxide.

https://www.youtube.com/watch?v=1YOAq2NhIrw

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Re: Beyond Avonex and Valtrex

Postby Scott1 » Wed Dec 02, 2015 8:36 pm

Hi,

Its now the end of my six month trial of botox. It does help and it makes sense only if you exercise and stretch the muscle that has been injected. That is easier said than done. The calf is simple but the hamstrings are more hit and miss. I have much more range in the leg than has been done than the so called good leg now. At the half way mark I was retested for mobility and speed and was slightly worse than at the start (still good though). The reason was the change in the pattern of my gait triggered bursitis in the opposite hip and that slowed me down. Eventually that needed a shot of cortisone but it didn't do much. The improvement in the hip came from series of Pilates exercises that were designed warm up the glutes and hip flexor and then I exercised to open the joint by stretching as opposed to the normal approach which is work the leg bone back into the socket. I now move like Nureyev when I exercise.
The lesson is when your hip is tight don't look at it. Look at how the opposite hip is working, how the glutes and hip flexors and psoas are moving and try to open the hip. It worked for me. In two weeks they will assess me again to see if I need more. I may approach it like a princess and just point to one spot on my right leg and day "there please". That might give me the range to practically do the splits. It's so far away from where I was I do recommend it if its offered. If your plan is to sit in a chair and do nothing then it wont work. You must exercise to overcome spasticity.
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Re: Beyond Avonex and Valtrex

Postby Scott1 » Wed Dec 02, 2015 9:57 pm

This is a note to myself so I remember when I started a new experiment. I have noted the interest in Biotin, specifically the open trial that was conducted mentioned here -
http://www.msard-journal.com/article/S2 ... 1/fulltext

As stated, Biotin is a vitamin acting as a coenzyme for carboxylases. It activates acetyl CoA carboxylase which is potentially a rate limiting enzyme in myelin synthesis.

Whilst their study focussed on chronic progressive MS patients I find the distinction into different categories unhelpful. I am old enough to have a progressive form and had an attack last year which made me wonder but I feel I am firmly back in the RR camp. Possibly I am just in remission and hope to stay that way. Nonetheless I did demyelinate on my cervical spine and experienced some spasticity which I am overcoming quite well.

The authors divided MS into an inflammatory component and a degenerative component. The progressive phase they considered may be a virtual hypoxia caused by a mismatch between energy demanded by demylinated axons and decreased energy production due to damaged mitochrondria. Their study is therefore looking for a therapeutic option rather than a cure. Having experienced a big inflammatory attack last year and realising the benefit of Q10 and acetyl-l-carnitine an hypoxic event make perfect sense to me.

As I have demyelination then I should look at the therapy. It worries me slightly it may interact with the other things I use but neither the doctor or the pharmacist have a clue. High doses of Biotin have therapeutic value in other circumstances.

What I am hoping is if I promote remylination that I will notice it in my hands and be able to reduce the dose if I can remain out of an inflammatory state. I do not think this is a cure but just a tool to help remyelinate.

Aceytl CoA is synthesised from fatty acids by enzymes, oxidation, and hydration over and over until it is ready to enter the citric acid cycle. It can also be synthesised from pyruvate which is the product of glucose metabolism. So we have plenty of CoA what we need is an enzyme to drive the tricarboxylic acid (citric) cycle. The authors hypothesised that the synthesis of malonyl CoA (derived from ACC1and ACC2) is a rate limiting step in fatty chain biosynthesis and ACC (acetyl-CoA carboxylase) may also be a rate limiting step in myelin synthesis. Biotin increases synthesis of the carboxylase group.

Although not discussed, we know glyceraldehyde-3-phospahte dehydrogenase is disabled by peroxynitrite so it may be that a similar thing happens with various carboxylase. That may be a source for degradation of myelin (a guess).

300mg a day is a massive dose. It is 10,000 times the normal level. It is completely absorbed and excreted. If it works then I see no reason to continue when I see a benefit as the other things I do should keep me well and I am not in an inflammatory state. This is about reversing the damage from hypoxia.

I’ve taken my first tablet and noticed a bit of a headache. It’s nothing for an Avonex survivor!

It’s so expensive. My compounding pharmacist charged AUD990 for 90 tablets. That’s a three month supply but they are the real 300mg doses of the stuff.
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Re: Beyond Avonex and Valtrex

Postby Scott1 » Thu Dec 03, 2015 3:03 pm

Hi,

The Biotin experiment is over. I developed a booming headache, my thinking became unclear, my hands felt worse and I slept for 12 hours and now feel washed out. Before I took it I was fine and really doing well.
As I have no idea why it happened I am stopping and returning to my original routine. One tablet was enough. A really expensive experiment.

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Re: Beyond Avonex and Valtrex

Postby NHE » Fri Dec 04, 2015 12:59 am

Scott1 wrote:300mg a day is a massive dose. It is 10,000 times the normal level. It is completely absorbed and excreted. If it works then I see no reason to continue when I see a benefit as the other things I do should keep me well and I am not in an inflammatory state. This is about reversing the damage from hypoxia.

I’ve taken my first tablet and noticed a bit of a headache. It’s nothing for an Avonex survivor!

It’s so expensive. My compounding pharmacist charged AUD990 for 90 tablets. That’s a three month supply but they are the real 300mg doses of the stuff.

Didn't MedDay's study use 100 mg 3x/day? Maybe 300 mg all at once is too much?
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Re: Beyond Avonex and Valtrex

Postby Scott1 » Fri Dec 04, 2015 2:22 am

Hi,

I noticed that. The pharmacy is treating others with the bigger dose and had no complaints. I need to work out why me before I try again.
A number of people who tried Valtrex struggled till they stepped back on supplements (eg D3) but I need to think a lot more about whats happening. Fortunately it has worn off.
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Re: Beyond Avonex and Valtrex

Postby Scott1 » Fri Dec 18, 2015 4:18 pm

Hi,
It’s probably time to update what I have been successfully doing. The one failure I had was Biotin. Maybe it was the dose, maybe it was a previously unreported interaction but whatever it was the stuff just does not agree with me at all. It’s for sale cheap if you live in Melbourne as I won’t touch it again.

I have had a further series of Botox injections in my left leg. I gained some benefit from the dose six months ago but it only worked in the calf and not the hamstring. I felt at the time that the hamstring shot was selected in a “pin the tail on the donkey” manner. To avoid that this time I went to my massage people and told them draw on my legs where they thought the tight spots were. Everyone had a lot of fun doing it! The next day, as I stood clothed in front of a Professor and six physiotherapists they confidently told me I had wasted my time as they were interested in motor neuron connections not muscles. When I removed my trousers they just stood there until the Professor said “did they do it on the back of the legs?” They could see the concentration of tightness in the hips and which hamstrings were affected and discussed the lines for 10 minutes. Then they did their normal examination for flexibility.

Normally the physios do the site selection and injections. When I lay down on my stomach, the Professor got down on his knees and took charge. He changed the needle size and did the shots himself constantly telling the others why he was doing it a certain way. I ended up with 200ml of Botox across six sites. My impression was it was a direct hit each time and I noticed the hamstring action changed as I resumed exercise. So, stupid as it sounds, if you are having botox find a good masseur and get scribbled on. The doctors won’t acknowledge that it helps them but I think it does.

The other big issue I have had for most of this year is elevated blood pressure. When I was really quite impacted back in February it recorded a high of 197/110 but mostly it was 160ish/90plus. This morning I had it down to 133/71.

My cardiologist knew the MS attack has coincided with my AF and felt he wanted more time before suggesting something to lower the blood pressure but had suggested a calcium channel blocker could be introduced this March.

The blood pressure issue really aggravated me. I had occasional arrythmyia and that can be indicative of elevated blood pressure.

My first task was to understand what was driving it so I read “Nitric Oxide,pathology and parapathology” edited by Louis Ignarro and a range University text books.

My conclusion was that I needed to introduce beetroot juice as a vasodilator and Hawthorn berry for the same purpose. In Australia, there is a chain of juice shops called Boost Juice. I went there and got the girls to make me a mixed juice of beetroot, carrot, ginger and Kale. I went to a compounding pharmacy and got Hawthorn Berry juice and took 2ml 3 times a day. The blood pressure fell but not by as much as I expected and I still had arrhythmia.

After researching I came to the conclusion that I needed to add magnesium. This is also one of Stephen Sinatras big four for congestive heart failure.

After a quick check with JimmyLegs I bought something close to what she suggested as a horse size tablet rather than a powder (see - http://www.ethicalnutrients.com.au/Prod ... vQodl5EM3A ) It was straight off the shelf and I took one on rising and one at midday.

In the evening I still take 5mg of Baclofen. It slightly lowers my blood pressure.

The point is I am trying to regulate the flow of calcium. It is calcium that floods from the sarcoplasmic reticulum that triggers muscles to tighten. Baclofen slows that because it is a potassium channel blocker but I can’t handle too big a dose of it.

So my day now looks like this

Morning
2x 1000mg acetyl-l-carnitine
1 tablet curcumin
1 x500mg Valtrex
1 horse tablet of magnesium as described above
1x glass of diluted Pomegranate concentrate
1 or 2 pieces of fresh fruit in season
3x boiled eggs (almost a religious undertaking)

Mid morning
Black coffee and newspapers
1 mixed juice beetroot, carrot, ginger and Kale (heavy on the beetroot)

Lunch
1x Magnesium horse tablet
Something simple, salady and small
Mid afternoon
I mixed juice Watermelon, Blueberry and raspberry

Dinner
Whatever hits the tablet – I have no choice
Before bed
750mg Q10 (oil base, preferably VitE related)
1x Valtrex
2x 1000mg acetyl-l-carnitine
1 curcumin tablet
5mg Baclofen

As you can see I don’t obsess about dosages and I don’t do endless tests of where I am. It’s more based on how I feel these days. I do monitor my blood pressure throughout the day because I am conducting a test but I won’t do it for the rest of my life.

I do 3x 1 hours of Pilates each week and would do more except a small class is expensive (and that is what you need). I walk two 9 year old Jack Russell dogs several times a day and threaten to put them in a curry. I always choose the stairs if I have a choice and go to bed at 10pm each night whether I am tired or not. All those things train my body about what to expect.

In addition I take regular, sometimes painful, massages. I endeavor to unlock knotted muscles, open the shoulder blades and release the hamstrings and adductors. Happy to go into detail if required.

I am still recovering but I am so much better. I don’t look or act like I have MS but I know my limitations. Work is not an option as it wrecks that pattern of behaviour. My working day was very intense and I can’t go back to that.

Hope this helps someone.
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Re: Beyond Avonex and Valtrex

Postby jimmylegs » Sat Dec 19, 2015 8:15 am

glad it helped so much and so quickly :D
for other readers - clarification: the recommendation was for mag glycinate powder CAPSULE (as opposed to the straight mag citrate powder i have also enjoyed as a hot drink but consider somewhat less effective absorption-wise)
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: Beyond Avonex and Valtrex

Postby Scott1 » Sun Dec 20, 2015 10:13 pm

Hi,

The arrhythmia cleared up on two tablets but I just didn't feel right and thought I needed more. I got brave (after hunting around) and took another tablet when I took my 5mg of Baclofen. I know they work differently but they both influence calcium so I didn't know what would happen. I ended up having the deepest sleep and feel great after it. When I first took Baclofen I also had really deep sleeps but it wore off, unfortunately.
Blood pressure is very steady around 136/80 and a pulse of 64. I think it needs Jimmylegs to explain why that form of magnesium is better. If you have elevated blood pressure or even a fluctuating heartbeat this is probably worth looking at.

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Re: Beyond Avonex and Valtrex

Postby Scott1 » Mon Dec 21, 2015 12:05 pm

Whoops!

The wise man said there is a difference between scratching yourself and tearing it to ribbons.
At 7 am my BP is 130/77 and the pulse is 69. Sounds good now but I think I went for a deep dive during the night. When it drops too fast it doesn't feel so good. I couldn't get out of bed to measure it. There is too much synergy between Baclofen and magnesium. I will need to work out how to manage this.
The first step is to back away then retest. The magnesium works but right now its too well.
Happy to hear any educated perspectives as the arrhythmia is controlled but now its too much.

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Re: Beyond Avonex and Valtrex

Postby Scott1 » Mon Dec 21, 2015 6:09 pm

Hi,

It's 1pm here and now I'm back to 140/76 with a pulse of 63. Arrhythmia is not apparent and I feel ok. As I went through the morning I did feel distinctly odd. I wasn't sure if my blood pressure was up or down but it was an odd feeling.
It clearly tells me that where your calcium is can play havoc with how you feel. Just have to find the happy medium now.

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Re: Beyond Avonex and Valtrex

Postby Scott1 » Tue Dec 22, 2015 1:46 am

Hi again,

Now I am not sure what to do. My BP is 138/75 with a pulse of 78 at 8.30pm. The diastolic measure is just so low compared to the 90 I'm used to producing. The sub 140 on the systolic is also well below where I normally am. Yet, I have had nothing since I got up this morning. I just didn't expect this.
Should I take anything at all tonight? Probably not is my guess.
The question is why such a shift? Did one (hard to tolerate) Biotin tablet do something, did the magnesium over a week make the difference, did combining Baclofen and magnesium do this, was it going to happen anyway since I introduced changes to my diet? I haven't got a clue. I think Baclofen and magnesium is too much but did it work like a kick to an old fashioned TV set?
I'll guess I just stay off everything and monitor it. The change in the diastolic is the one that has really surprised me.

Ideas are welcome.

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Re: Beyond Avonex and Valtrex

Postby jimmylegs » Tue Dec 22, 2015 6:47 am

hi :) i recall suggesting starting with 100mg per day, then 200mg per day, and a caution re the possibility of too much, noting that old recommendations along the lines of 600-800mg per day pre-date the availability of the more absorbable magnesium glycinate.

can you share your horse pill composition, and how many have been taken per day? (i see two per day above but that was just for the 18th; any variation on the days between then and now?)

also, how has the timing gone, re when you take baclofen and when you take mag? i see one mention about you taking them simultaneously. what has been the full daily baclofen/mag routine so far?

re diastolic, here are the top 2 results of a scholar search on mag vasodilation:

Mechanisms responsible for vasodilation upon magnesium infusion in vivo: clinical evidence
http://www.ncbi.nlm.nih.gov/pubmed/12635879
"The vasodilatory effect of Mg is incompletely understood. On one hand, Mg can act as a physiologic calcium-antagonist, but in addition interest recently has been focused on whether endothelium-derived nitric oxide is involved in Mg-induced vasodilation... studies suggest that Mg chloride influences vasculature more than Mg sulphate... The present review includes evidence concerning mechanisms of the vasodilatory effect of Mg including endothelium-derived nitric oxide, as well as the possible differences between different Mg salts."

Magnesium causes nitric oxide independent coronary artery vasodilation in humans
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1729866/
"Magnesium dilates both the epicardial and resistance coronary arteries in humans. Furthermore, the coronary arterial response to magnesium is dose dependent and independent of EDNO."
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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