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Thanks lr! Not brave just desperate.

You've given up on the other treatment options you were considering? I hope things go well with your rituxan. Maybe if it takes a while for you to get things together, I'll have some useful data on the iv/it results. I'll probably get spinal fluid tested in April. Maybe a few of my o bands will have disappeared by then. MAYBE. Lol

Good luck!

Nothing exciting to report. I've been knocked on my butt since last infusion. There was a lot of noise (nerves riled up because of immune response to rtx, I think) that was easily hushed with Benadryl. I feel like I'm really sick but not sick at the same time. I guess the reaction to rituxan is hogging all resources. Who knows? I seem to be recovering some sensation in the meantime, including sensation I didn't know I had lost. Strange, that. I'm still down but at least it's frustrating me to be down now...hint of recovery.

I'll be starting 500mg/day valtrex tomorrow. Will add supplements later...

Hi Anonymoose,

Very glad to hear you're ok. It's a harsh form of treatment. Not surprised you're feeling sick. Hopefully it's all good news from here.

Thanks Cali. I just wrangled and started a load of laundry (forgot to mention night sweats are an issue in previous post) and lived to tell about it. Things are looking up already.

Well that was no good. I took 500mg valtrex at around 5pm and by midnight I was experiencing the same painful buzzing in my hands feet and legs that I did when I relapsed on 1500mg valtrex. Too much going on in there to start the valtrex. I will retry Jan 1 when things should be settled down.

Started supplements this am. A multi, 200mg mag, 22mg zinc, 100mcg selenium, and 4000 iu d3. The multi has low levels of everything but mag too. Will take another 200mg mag in the evening, jimmylegs style.

Cinnamon tea and coconut oil "buttered" sprouted grain toast being added to the menu. Yummy snack. I need to get out to buy carrots for juice.

Oh! My formerly pale (but not geographic mapped) tongue is now pink!

The supplements are stirring things up too, though not nearly as badly as the valtrex. Sigh. I'll take a break for the weekend and restart with just a multi and 200mg mag. Even if the stirring is for good, I need to get off my bum and back to normal before poor hubbers dies from dishpan hands or something.

The good news is when all is quiet, I have improved sensation everywhere.

Occasionally I get little localized headaches and sometimes my head feels a bit sore when I touch it/lean on hand. It hasn't blown up yet so I suppose it's no big deal.

I'll try to go sky diving or something so next update is more exciting. Even I am bored to tears by this.

Quoted below!

LR1234 wrote:It seems that you are quite sensitive to valtrex (and supps) but your body has been through a lot so you don't need to push it xx
I hope the increase in sensation sticks around, hope you feel some benefits from your ordeal (and I say ordeal as lumber punches are horrid!!!). Xx

Hi LR,
My neuro uses a smaller needle for the LPs. I suspect that makes things a lot less painful. It's really just uncomfortable and gross feeling with brief moments of minor pain. Nothing to cause you nightmares.

Didn't go skydiving but did manage to undo a month's worth of man kitchen damage/neglect. Baby steps.

I don't feel sick at all anymore. I can't nap but do have to rest a couple times a day when I start feeling weakish (?). Still have strange sensory stuff going on but it isn't like the stuff I experienced earlier and Benadryl doesn't make it go away anymore. The heat thing traveled up and down my spine for a while and came and went. Now it is haunting the sides of my upper ribcage, inner upper arms, and a bit in lumbar section. Some things feel improved. Some things feel worse or different. I can't tell! Night sweats are mostly gone. If anyone else ventures to do this, please do tell if increased libido is an unexpected side effect. If that's a placebo effect, I don't mind.

I didn't start the multi on Monday...will try tomorrow.

Lovely, heat traveling down my arms towards my hands now. Someday this will make sense...but it sure doesn't today.

Mmmmmm time will tell if it's positive or negative in the overall picture.
Enjoy increased libido:) lol

No problems with the multi and magnesium (extra 5000 b12 too...seems to help with sensory issues but I am a master of placebocity so take that with a grain of salt). On the 15th I started 500mg valtrex again...so far so good with that too. I'm thinking of doubling in a month.

Some days are pretty normal. Some days aren't. Neuro symptoms are light but energy comes and goes. (I know, scott1...CQ10 soon!). The best news is I can hand quilt for as long as I like with no pain. I'm actually going to finish that darn quilt!

LR, you jinxed me! I lost that extra mojo.

I still react badly to coq10. It makes me feel strange within about 20 minutes of taking it. Floaty, dizzyish, and on the verge of not good things. So weird. It's also not recommended to be taken with anything that might challenge the liver like valtrex. So, it's out for good.

B12 continues to cause improvements (I think). It makes everything feel better relative to pre-rituxan (as opposed to some things better, some things worse or different). It never had that effect before and I've taken a lot of b12. It really doesn't make sense because i shouldn't have to keep taking 5000/day. But if I skip it, things go back to some good, some bad (ish). Within 2 hours of taking it, it goes back to all good. Coincidence? Could I just be taking it at the magic hour of my circadian rhythm? Need to pay more attention to detail. Anyway, I'm adding fatty acids in case myelin building components are suddenly useful.

Can't wait for the magic 2 month mark!

Anonymoose wrote:I still react badly to coq10. It makes me feel strange within about 20 minutes of taking it. Floaty, dizzyish, and on the verge of not good things. So weird. It's also not recommended to be taken with anything that might challenge the liver like valtrex. So, it's out for good.

What kind of CoQ10 are you taking, ubiquinone or ubiquinol and how much? With absorption enhancers or without? If with, what kind, e.g., phytosome or piperine?

NHE wrote:

Anonymoose wrote:I still react badly to coq10. It makes me feel strange within about 20 minutes of taking it. Floaty, dizzyish, and on the verge of not good things. So weird. It's also not recommended to be taken with anything that might challenge the liver like valtrex. So, it's out for good.

What kind of CoQ10 are you taking, ubiquinone or ubiquinol and how much? With absorption enhancers or without? If with, what kind, e.g., phytosome or piperine?

Ooo! Good question. It's ubiquinone with no enhancers. I had taken coq10 when I was doing CAP and didn't have any issues with it. The bottle is long gone so I don't know what form it was. I bet it was different. I took bioperine for Curcumin absorption during CAP too.

Is there a better form to take? I still worry about the liver warning...

Update: since adding coq10 and fatty acids (flaxseed oil, dha-epa) this am the icy hot has returned...new region, has me wide eyed and laughing. Could life get more ridiculous?

Anonymoose wrote:

CaliReader wrote: If an hsp90 inhibitor ever hits the market, that might be a safer alternative.

I will definitely share results though it will be hard to separate the ebv/immunosuppression impacts for a long time, if its ever possible.

I hope the gilenya works for you too!

You are aware that 17-AGG as well as other hsp90 inhibitors can be readily purchased online for like $145/mg? Too bad it requires lifelong dosage, which leads me to how I found this thread by accident. I was trying to see if combining the incredibly effective hsp90 inhibitors with an ebv antiviral if there is one would work better.