Steroid pulse on SPMS (no relapse), reason for improvements?

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Re: Steroid pulse on SPMS (no relapse), reason for improveme

Postby CureOrBust » Tue Apr 12, 2016 3:46 pm

Scott1 wrote:Please don't get gout. I had it once and it's not just a sore toe. The whole body doesn't feel great. Maybe back it off a little. More is not always better. If you do get gout remember that Valacyclovir is a purine nucleotide analogue so if they give allopurinol you will be taking a purine and an antipurine. Hard to exert yourself when that battle is happening.
Too late, I think I have given myself gout (a few times, very mildly) However, luckily, I just back off and it resolves itself in a few days. The weird thing is that even though I have been on this dose of Inosine for a number of years, it never happened until after i started taking the raltegravir.

Scott1 wrote:What happens if I said climb a couple of flights of actual stairs? Where would you feel it?
I virtually always take the stairs if its an option! I don't feel it anywhere specifically, just generally in all my legs. The more the flights, and I start to lift my right leg less and risk kicking the next step and tripping if I don't pay extra attention.

Scott1 wrote:Is your gait normal or do you lift one hip and move your leg in an arc?
Not too sure, I think its generally normal, except my right leg is worse, so I tend to not lift it high enough, or if I am tired, drag/kick my right toe on the ground. As it gets worse, it almost feels like its a controlled falling forwards.

Scott1 wrote:If you lie on your back and pull one leg back so the knee is above the hip and the lower part of the leg make the leg into a L shape which way do your toes want to point then?
Havent tried, I'll give it a go later and let you know. I do know that historically, my babinski reflex has come and gone.

EDIT: just got off exercise 30min ago, but when I try it, my toes don't appear to be going anywhere. ie the toes simply follow the angle of my foot.

Scott1 wrote:It's interesting what you said about ABX. A lot of bacteria have pumps built into their walls, particularly the ones with thicker peptidoglycan layers. When an antibiotic attacks them, they sort of shut down and go into hibernation and devote all their energy to pumping the antibiotic out. When the antibiotic ceases they resume normal activity virtually unscathed. This is how resistance has developed. While you are on the antibiotic you think there's an improvement and as soon as you cease using it the bacteria hit back hard. You may have experienced that problem or you may have had a herximer response. In either case the course may not have done its job.
People who use ABX's for MS address your points. There is a specific forum on TIMS regarding it, and it has been developed by a microbiologist and a university research team.

Scott1 wrote:On the Q10, I was thinking about what sort of oil the gel capsule has in it rather than what oil you take along with it.
I understand you were asking whats specifically in the capsules, but there is non specified, which is why I told you what I took them with. My brand uses bioperine to boost their absorption. And I take the fish oil with them myself.

Scott1 wrote:You do take a lot of the brand you use. It would be interesting to see if the type I take makes a difference. They cost more but you wouldn't take a dose as high.
When you factor in how many I take, the cost probably works out the same. I may give your brand a go, but I would not expect any difference, so am in no rush. I have used other brands historically.
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Re: Steroid pulse on SPMS (no relapse), reason for improveme

Postby Scott1 » Tue Apr 12, 2016 8:25 pm

Hi,

I'm not sure I understand why you tried Raltegravir but you're the boss. If it ultimately lowered peroxynitrite then it would have meant less glceraldehyde-3-phosphate dehydrogenase would have been disabled so you would be making more ATP hence the purine level rises and so does the uric acid. There's a difference between scratching and tearing it to ribbons. You may need to back the doses down.
What you describe about going up flights of stairs suggests to me that the psoas needs a good stretch and strengthen. That's the bit that controls how high you lift your leg. That's not the leg muscles themselves which the machine is helping. Fixing the psoas is not easy. It's supposed to be perfect and it's hard to reach. I can only suggest pilates or yoga. The door jumps sound a good idea but it depends on technique.
It might be your body recruits the most available muscles rather than the ones you need. You might need an instructor to pick on you. the give away would be how you manage going downstairs hanging on to nothing or how you walk backwards up the stairs, again, hanging on to nothing.

Taking your time about choosing to try a different brand is perfect. Why on Earth should you ever take somebody else's word for it? I'm not you. Nonetheless, it would be interesting. I'm struggling to understand how bioperine works in this context. It seems like it's a macromolecule that acts as a transporter to take other molecules to high affinity sites. I'm probably more focused on how viable the Q10 is when you ingest it as it is a large molecule.
Q10 molecules continuously goes through an oxidation–reduction cycle. It's an acceptor and donor of electrons. In it's reduced form it regenerates vitamin E from the a-tocopheroxyl radical. That improves the antioxidant potential of Vitamin E. We need all the antioxidant help we can get to control inflammation.
My preference would be to have that happening that just deliver the Q10 to the electron transport chain.

Maybe we just forget about the toes. I'd have to see them to understand adequately. Too easy to talk at cross purposes.

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Re: Steroid pulse on SPMS (no relapse), reason for improveme

Postby CureOrBust » Tue Apr 12, 2016 9:06 pm

Scott1 wrote:I'm not sure I understand why you tried Raltegravir but you're the boss.
Charcot project (which failed to meet its end points https://clinicaltrials.gov/ct2/show/NCT01767701) and there was also the case of a nurse wth MS who took a dose as a safety precaution after coming into risky contact with an aids patient, that responded very well.
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Re: Steroid pulse on SPMS (no relapse), reason for improveme

Postby NHE » Tue Apr 12, 2016 10:25 pm

Scott1 wrote:I'm struggling to understand how bioperine works in this context. It seems like it's a macromolecule that acts as a transporter to take other molecules to high affinity sites.

Piperine inhibits several of the cytochrome P family of detox enzymes. It's been discussed a few times.
natural-approach-f27/topic18613.html#p181912 I also recall some discussion that piperine may interfere with vitamin D3, but I can't find it right now.
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Re: Steroid pulse on SPMS (no relapse), reason for improveme

Postby Scott1 » Wed Apr 13, 2016 5:47 am

Hi,

Thanks. I had a look around and my guess wasn't bad but you're right. Either way I'm unsure it is able to achieve the same antioxidant benefit in the way the form I take does. Happy to be corrected.

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