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California 2014: IACFS/ME Day Three: Translating Science into Clinical Care: 22 March 2014
Day Three, and Searcher continued to deliver the goods. We hear about the PANDORA national survey results, a very big familial case study from Spain, results from the Canadian Community Health Survey, more results from epidemiological studies (and a look at treatments and...
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Update!

Discussion in 'Rituximab: News and Research' started by Jacque, Nov 14, 2012.

  1. Jacque

    Jacque Senior Member

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    Sorry I haven't had much to report... Week 18 - after 3 infusions of Rituxan. No change in pain level :( still an 7-9 most days - maybe even worse). Flu like symptoms may have improved slightly but those would come and go prior to taking Rituxan. My energy levels are no better or worse. Cognitive seems WORSE... been pretty scarey lately, really feel like I am slipping. OI symtoms the same.

    The only REAL change I can report is I have GAINED nearly 10 UNWANTED POUNDS!!! :aghhh: After my first infusion I reported INTENSE sugar cravings - and I am still having them. The Rituxan is obviously doing something to my glucose levels. I have never been much of a "sugar" type...and when the cravings did come - I could resist - knowing full well how it "feeds" all of my infections! These sugar cravings are out of my control at times... I have literally gone to the store to buy frozen yogurt, Starburst, or Peanut MnM's! That is unheard of for ME! Not an every day occurance but enuf to pack on 10 lbs I guess... sigh

    Doin some serious "soul searchin"...as I am becoming a very impatient.. patient!!! I knew going in that this was all experimental but after 4 1/2 months I am exploring my options. At nearly 52 I guess I am getting a little "anxious"...

    I got a 2 FULL MONTH REMISSION ... years ago with a multiwave Oscillator called a Bio Charger. www.biocharger.com I cannot get that 2 months of NO PAIN, NO FATIGUE, BLISSFUL SLEEP ... OUT OF MY HEAD! I contacted the owner of the company and we suspect we know why I lost my results. I was using the machine in my apt with a wood floor ... and was feeling so fantastic that all my friends told all of their sick friends and I had a zoo at my apt before you knew it. For sanity purposes I moved the machine down to my girlfriends wellness center and gradually lost all of my results... It was beyond DEPRESSING... At the time no one knew why...but Jim suspects it was because I moved it to a concrete floor and lost charge. Kind of a confusing story I know...but I HAVE TO GIVE IT ONE MORE TRY! I felt so great in that two months that I was ready to snow ski and maybe run for President! It was Pure BLISS! Maybe it was the floor? What If?? Or maybe my brain just became entrained with the energies. Either way I have to know. So my Bio Charger will be here in a few weeks.

    When you read about multiwave oscillators they address all of our issues: BRAIN, IMMUNE, LYMPH, Mitochondrial function!!

    I am not being a compliant patient waiting the 22 weeks...but I am damn close...and if the BC works again I will have a nice Christmas....... for once!

    The other thing I remember VERY CLEARLY was that I started to feel a HUGE difference within 4 days with the Bio Charger and then it got better EVERY DAY!! No herxing, feeling horrid etc... Is there a CLUE here for all of us...or was that 2 months of BLISS a chance occurance?

    Well ... I intend to find out and I will keep you posted!!

    Hugs to all - Jac
    Hanna likes this.
  2. Tammy

    Tammy Senior Member

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    Hi Jacque, I have forgotten...........how long are you supposed to stay with this therapy? If you decide to quit before the suggested time..............I wouldn't blame you one bit...............your body..........your choice. Sending hugs...........thanks for the update.
  3. taniaaust1

    taniaaust1 Senior Member

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    Does Rituxmab usually work before 18 week point? If it commonly starts to help after that.. it may make it hard to tell what's helping if you start something new.

    best luck with whatever u try to do.
  4. Jacque

    Jacque Senior Member

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    The jury is still out on that!! Usually around week 22 soooo it is said!! That is another month out of my life... If I start to miraculously feel better after getting the Bio Charger...then I will just be that patient who got better with a Bio Charger and 3 Rituxan infusions.... I am so the waiting and waiting and seeing what does what... I will leave the lab rat stuff up to everyone else if by chance the BC works as it did before. 35 years of this illness has worn out my last day of patience!!! ugh Possibly one month less on the couch is a risk I need to take as my life is spent month after month on the stinkin COUCH...
  5. Jacque

    Jacque Senior Member

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    A WHOLE STINKIN YEAR in total!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
  6. Jacque

    Jacque Senior Member

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    I also figured that when I get the Bio Charger and if I start feelin great again...and wondering if it is the BC or the Rituxan I will just stop using the BC for a few weeks and see what happens... that will probably tell me what I need to know I guess... I am just desperate to have a nice Christmas with my wonderful Grandsons!! So damn tired of clawing my way through them and not enjoying them really... Guess I will try anything to have a nice Christmas for once. sigh
  7. justy

    justy Senior Member

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    Jacque - i hear what you are saying and i understand. I managed to gain about two points over the last year from a 3 to a 5 on the scale. Now its all sliding back again. I dont know whay this is happening. I thought that if i carried on at this rate i could be working again next year and maybe almost fully better within another two. It really stinks to have improvement only to lose it again.
    I guess i am lucky that i had a near remission for about 8 years - but being back down so low is depressing - especially with christmas coming up and my grandaughter coming for the first christmas with us.

    Hang in there, and good luck with whatever you decide.
    Justy x
  8. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Jacque

    If the Biocharger works, prepare for guests! :cool:

    Sushi
    snowathlete, Hanna, minerva and 2 others like this.
  9. minerva

    minerva

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    It is good to hear this honest appraisal. I am on Valcyte right now and preparing to going on Rituximab as well. Except I am flaring SO BAD in my first three weeks of Valcyte treatment that adding another harsh treatment sounds just impossible to me. Frightening even. I am actually seeing cognitive improvements with Valcyte and improvements in endurance on the days when I am not fluish and sleeping. These are desperate times! This week when I got cupping acupuncture treatment I too felt like I could run for president. It is possibly the best I have ever felt. I was so pain free I was high! But I'm really unsure about Rituximab. Thanks for posting. The biocharger sounds interesting, possibly as a treatment for my cat's back problems too --- I have really long wool carpet, so I'm not sure it would ever work for us, though.
  10. Jacque

    Jacque Senior Member

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    Oh then I really hope it works cuz I want to meet you!!!! ;) Should have it in a week or two.

    Been completely BAD sick for the last week. The Rituxan is really messin with my blood sugar I think. UGH
  11. Jacque

    Jacque Senior Member

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    I don't think your wool carpet would be an issue...you just can't be standing on concrete or you lose the "charge" into the ground... He said to stand on a milk crate or something... I will learn a lot more when I get it.

    Ok...now about you and the Valcyte... hmmmm if I were you .... I would just proceed with the Valcyte as it sounds like it is really making some progress with you... The Flare is a sign it is stirrin something up and the better mental focus sounds VERY exciting. If it had it to do all over again I would have started with the Valcyte or Famvir and if no results then I would have gone the Rituxan route. But I was told I stood a better chance with the Rituxan. It is $$ expensive even tho the drug is covered ($1,050) per infusion... and with the way I am feeling lately over 4 months into it...I am not sure if I wen to continue. It is really messin with my glucose and I hope and pray I have not gotten organ damage or something... I am gonna ask for some testing here sooon as this sugar binging I am doing is not normal for me... it is BAD in so many ways. Yesterday I got very weak and clammy and ate a bowl of Sherbert (my new addiction) and I was fine within 10 min! Not a good sign. You didn't ask for my opinion - but it sounds to me like you are on a good track already!!

    Please let me know how the cupping results last with you. Very interesting!!!

    I think there is a lot to be said for "energy" medicine. Makes a lot of sense to cure yourself with energy instead of poision... since we are made of pure energy and not medicines... ugh But finding something that really works is the trick!!

    Keep us posted on the Valcyte and the Cupping please...
  12. minerva

    minerva

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    I am doing the cupping one to three times a week and, with Valcyte, it makes me feel amazing. I have incredible cognitive clearness, like pre-illness. Still have a lot of physical problems and spasticity in my legs is not gone. But this is a marathon, not a sprint. The cupping helps so much -- at first the marks where the suction was pulling toxins out of my skin were so dark and now they are really light. It seems like a really powerful modality. I'm able to sleep for ten and eleven hours at a time, too, which is unheard of. I'm also no longer flaring on the Valcyte, at the end of week three. I'm thinking about keeping going with the Valcyte and seeing if I keep progressing. I can reach for Rituxan if I plateu or if I stop tolerating Valcyte. It seems like adding something else right now would confound things!
  13. Daffodil

    Daffodil Senior Member

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    what is cupping?????
  14. Sushi

    Sushi Moderator and Senior Member Albuquerque

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  15. Daffodil

    Daffodil Senior Member

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    thanks sushi. wonder if it hurts.
  16. RUkiddingME

    RUkiddingME Senior Member

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    Hi Minerva: I'm glad to see someone else trying Valcyte, sorry you are having a bad three weeks so far. I am starting after Christmas and can't wait. Would you say your symptoms are a worsening of your ME/CFS symptoms or just Valcyte side effects (as you know the list is huge!! lol) I will post my adventure as well and hopefully we both benefit and can tolerate the stuff ::thumbsup:
  17. ukxmrv

    ukxmrv Senior Member

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    I've got a cupping device that a chinese friend has given to me. Yes, it does hurt if you have painful spots on your body but otherwise OK. I've not noticed any dramatic help. Tried it before Valtrex though. Gave up. The Valtrex helps me.

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