Search found 1140 matches

by Anonymoose
Tue Oct 23, 2018 7:01 pm
Forum: Mavenclad (Cladribine)
Topic: cladribine / leustatin / mavenclad
Replies: 25
Views: 1820

Re: cladribine / leustatin / mavenclad

@jimmy

Fair enough and yeah, I feel that. Good thing we’ve got ourselves. ;)

Be well
by Anonymoose
Tue Oct 23, 2018 1:49 pm
Forum: Mavenclad (Cladribine)
Topic: cladribine / leustatin / mavenclad
Replies: 25
Views: 1820

Re: cladribine / leustatin / mavenclad

@Scott1 I guess my original intent was to reduce ebv load and I probably did that. But...ebv can hang out in non-b-cells so I doubt I totally killed it off. Part of the reason I did the beuhner protocol and worked w an out-there integrated medicine doctor was to maximize my immune system’s potentia...
by Anonymoose
Mon Oct 22, 2018 6:11 am
Forum: Mavenclad (Cladribine)
Topic: cladribine / leustatin / mavenclad
Replies: 25
Views: 1820

Re: cladribine / leustatin / mavenclad

Hi Scott, I can’t do the valtrex this time. It makes me too sick and I need my wits about me atm. On the bright side, no valtrex means I can take 2000iu d3/day which should help the Rituxan do its work and seems to be needed as it was the only thing that cleared the long lingering cloud out of my he...
by Anonymoose
Sun Oct 21, 2018 2:04 pm
Forum: Mavenclad (Cladribine)
Topic: cladribine / leustatin / mavenclad
Replies: 25
Views: 1820

Re: cladribine / leustatin / mavenclad

Cladribine would be significantly riskier than heavy duty iv/it Rituxan every 4-5 years. It’s impact on the immune system is stronger and lasts significantly longer. That said, I’m not sure my rituxan regimen is working...mri was okay but my increase in OCBs not pleasing in the least. Cladribine tre...
by Anonymoose
Fri Oct 19, 2018 6:12 pm
Forum: Mavenclad (Cladribine)
Topic: cladribine / leustatin / mavenclad
Replies: 25
Views: 1820

Re: cladribine / leustatin / mavenclad

Hey jimmy, I was considering going with Cladribine but wimped out and stuck with Rituxan. It’s still next on my list for now. I suppose it goes w/o saying that I would be psyched to read of someone else trying it before I try it. You go first and I’ll follow in a few years? :D Good luck w your resea...
by Anonymoose
Fri Oct 19, 2018 5:59 pm
Forum: General Discussion
Topic: erectile disfunction
Replies: 4
Views: 688

Re: erectile disfunction

Hi Maxim, While I, being female, am ill-equipped to relate to your exact circumstance, I can relate to unexpected short-lived improvements. For me, they are always always always caused by something I ate. When you experience those 2-3 extraordinary days, take note of what you’ve been eating. If ther...
by Anonymoose
Wed Sep 26, 2018 4:09 pm
Forum: Rituxan (Rituximab)
Topic: Rituximab iv and intrathecal with valtrex
Replies: 130
Views: 25671

Re: Rituximab iv and intrathecal with valtrex

CSF results are in...high IgG, normal albumin, high IgG/albumin ratio, >12 ocbs unique to CSF (last test was 9 and I think the lab dudes should be able to count higher than 12), and high mbp according to a yet to be proven test (the normal range for it allows for 1.2ng/ml mbp. It’s normal to have mb...
by Anonymoose
Thu Sep 13, 2018 6:01 pm
Forum: Rituxan (Rituximab)
Topic: Rituximab iv and intrathecal with valtrex
Replies: 130
Views: 25671

Re: Rituximab iv and intrathecal with valtrex

Updating this for those still or newly interested in Rituxan... I had first post Rituxan MRI (no gadolinium) in August. I’ve still not seen the film but read the MRI report yesterday during my first infusion of rituxan round II. The radiology report said “very mildly progressing disease over interva...
by Anonymoose
Tue Sep 11, 2018 12:51 pm
Forum: General Discussion
Topic: Progressive MS symptoms leading up to not being able to walk
Replies: 11
Views: 1080

Re: Progressive MS symptoms leading up to not being able to

d3 50,000 IU per week, i believe. potential/likely secondary mag depletion in the picture. Maybe some of the other Rituxan-related things apply? I’ve a list w/o linked sources. Magnesium and potassium for sure. Taurine, copper, and iron prolly. Also, Rituxan is now flagged for possible hep b reacti...
by Anonymoose
Tue Sep 11, 2018 10:18 am
Forum: Ocrevus (Ocrelizumab)
Topic: After first infusion no change in progression
Replies: 4
Views: 868

Re: After first infusion no change in progression

Hey guys, I posted a link in a response to vender’s other current post re:walking. Don’t have time to dig up that link again but it lists some micronutrients essential to Rituxan’s (cd20 mab like ocrevus) effectiveness. Rituxan seems to have done well by me. Should be starting round two tomorrow but...
by Anonymoose
Tue Sep 11, 2018 10:06 am
Forum: General Discussion
Topic: Progressive MS symptoms leading up to not being able to walk
Replies: 11
Views: 1080

Re: Progressive MS symptoms leading up to not being able to

I have always been able to push through and keep going. This is a new form of fatigue that literally takes me out. I had thought that my legs couldn't get any worse I was wrong. The pain is truly unbearable and I have a very high tolerance for pain. I take no pain medications and this is getting to...
by Anonymoose
Sun Mar 18, 2018 10:12 am
Forum: Undiagnosed
Topic: Odd symptoms -- am I just a wimp?
Replies: 13
Views: 1810

Re: Odd symptoms -- am I just a wimp?

Hi Katejo, Sorry you’re having problems. It’s a pain when docs can’t figure things out. A little advice from my “what works for me” files. Try a thiamine supplement for the tingling, energy, and lactic acid buildup. If symptoms respond and you keep taking thiamine, add b complex too. For muscle cram...
by Anonymoose
Tue Feb 20, 2018 2:36 pm
Forum: General Medications
Topic: PAIN
Replies: 2
Views: 3328

Re: PAIN

What kind of pain? I had burning hands, feet, and legs fairly often for about 7 years. Thiamine (about 300mg throughout day for first few weeks then 100-200mg/day as preventative/maintenance) made it go away, like Alieve makes a headache go away. It also helps with energy and it seems like my requir...
by Anonymoose
Sun Feb 04, 2018 3:35 pm
Forum: General Discussion
Topic: 20 year old treatment
Replies: 16
Views: 1647

Re: 20 year old treatment

If your neuro is offering Rituxan as first line med, YOU ARE LUCKY! Most people have to fight and muddle through less effective and/or riskier dmds before their neuros will prescribe rituxan. Insurance is also an issue. You want to take the safest, most powerful treatment you can early on in your di...
by Anonymoose
Wed Jan 17, 2018 7:55 pm
Forum: Biotin (Qizenday, Cerenday, MD1003)
Topic: No more positive effect from biotin after a long period
Replies: 7
Views: 2042

Re: No more positive effect from biotin after a long period

I wouldn’t give up so easily. The only possible/obvious explanation (I can think of) for a nutrient to stop rendering once experienced benefit is depleted co-factors, not all of which are documented in studies or known by experts. I’d start by lowering biotin dose to allow for recovery of cofactors ...