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Re: BloodWell supplements 11 years 8 months ago #13727

  • wildflower
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My platelet count was 22,000 last month. My hematologist would like to treat me with Rituxan, but I am not ready to try it. I started the bloodwell products on the first of this month. I just had another cbc done today and was contacted by the oncall doctor that my platelets were at a critical level of 17,000. So far, the herbal remedy is not working, but I understand from their website that the amount of time for results varies for each person. I'm not giving up yet.

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Re: BloodWell supplements 11 years 8 months ago #13728

  • patti
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I'm not into the bloodwell products (did look into them though) but was actually more surprised he called 17K critical? Seems odd.

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Re: BloodWell supplements 11 years 8 months ago #13732

  • eklein
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What is it about the Rituxan that concerns you, and what is it about the Bloodwell that makes you comfortable trying it?
Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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Re: BloodWell supplements 11 years 8 months ago #13733

  • JazzenJanzen
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It seems BloodWell is a real hit and miss... maybe even more miss than hit? But it's worked for some. *shrug* Never know until you try, is what I always say. Good luck to you!
There was a time 17,000 was high for me. :D I don't consider that critical...... but that's just me. Know thy self.... don't get too caught up in what the labs say.

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Re:BloodWell supplements 11 years 8 months ago #13745

  • LPousada
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I'm a physician with pregnancy-induced ITP which has waxed & waned for about 25 years. My counts run about 75,000-90,000 in low stress periods but drop to to 30,000 quickly during infections, stress, etc. I've been on & off prednisone for the past 10 years.

Your question caught my eye because I'm generally a strong advocate of tetanus boosters (tetany is "the disease of neglect" by doctors who don't keep adult immunizations up to date. I finally got off prednisone entirely this year but I'm due for my 10 year tetanus booster, which should include pertussis as well this year for the first time. That addition by the CDC is due to the 2010 epidemic of pertussis in the mid-West. IIn previous years, Boostrix, which is a brand name combo of tetanus toxoid with reduced diphtheria toxoids plus acellular pertussis vaccine, has only been used in pediatrics.

I just checked to see if tetanus toxoid alone causes low platelets. My medical database ePocrates states only that it should be given with caution to immune suppressed people. Boostrix, also sold as Daptacel by Sanofi, similarly doesn't list ITP as an adverse reaction. Of note, Tripedia also by Sanofi, which is stated to have the exact same composition, DOES list ITP as a serious adverse reaction. This leads me to believe that pure tetanus booster is best for people with ITP. So that's what I'll take this year.

Thanks for the heads up! I'll let my hematologist colleagues know about this. I'll get back to you if there are other cases like yours.

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Re:BloodWell supplements 11 years 8 months ago #13749

  • eklein
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Wow this is really good information lpousada, thanks - I'm not sure what you were addressing in this thread, but I recently had started a different thread about the tetanus booster.
Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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Re:BloodWell supplements 11 years 8 months ago #13750

  • Melinda
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And I'm one who had a crash thanks to a tetanus booster in 2002 - the booster in 1992 did not bother my count at all and that is why I thought that something was different about the one given to me in 2002. My thought is the one in 1992 was just a tetanus booster and the one in 2002 had more in it. Both those were due to a rusty wire - now I assume I would be due for a booster next year but to be honest I really don't want one and will have to think long and hard about getting on.

Tetany is tetanus?

Thanks for the information LPousada - very much appreciated!

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Re:BloodWell supplements 11 years 8 months ago #13751

  • wildflower
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I've read all the possible adverse side effects of Rituxan, and because of that I'm very reluctant to try it. My hematologist said it should raise the platelets up for at least a year. He has an excellent reputation in this area, but he did admit he has only done the infusion for a couple of patients with ITP (another reason I'm reluctant, even though he said they had good results). Right now, I don't think the risk is worth the outcome. On the other hand, I was impressed by the testimonials I read on the Bloodwell website. As for the level of 17,000, it may not seem low to some, but it is the lowest I've ever been. It was the PCP who ordered the cbc for me; hence the lab's red flag and an alarmed on-call doctor who frantically tried to reach me that night to determine if I needed to go to the ER. She even called the on-call hemagologist to confer with and they both decided I only needed to go to the hospital if I started bleeding. Thankfully, I'm pretty much asymptomatic, except for random bruises and the occasional minor bloody nose, not to mention fatigue. I was diagnosed a little over two years ago. The platelet count has fluctuated slightly, but for the most part they have steadily, if not somewhat slowly, dropped since then. The steroids had no effect. If they keep going down, and the pattern indicates they will, I may have to resort to Rituxan. I've read comments on this site and others, I know many people have experienced much lower levels and have gone through different treatments. Some seem to work and some don't. By the way, I appreciate the comment not to get too caught up in the labs, since we are all different and what is a low count for some, may not be for others.

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Re:BloodWell supplements 11 years 8 months ago #13756

  • eklein
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I can totally understand your concern about possible adverse side effects of Rituxan. It's a choice and a risk you have to make. But what are the possible adverse side effects of Bloodwell? It scares me now to know, I like to have the information on both sides.

As to testimonials, you'll find many positive testimonials about Rituxan on this board. Me for example. Remission for over 3 years now. A few negative experiences too - but then on this board we wouldn't put only the positive experiences whereas on the Bloodwell website that is advertising and they only put the positive testimonials.

I think you might want to look at the same types of information for all your decision options.

Good luck and many platelets - Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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Re:BloodWell supplements 11 years 8 months ago #13782

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Wildflower:

The side effects for Rituxan on the Genentech website look horrible; agreed. I've read them. I can honestly say though, that very few people ever get any of them. Most side effects occur during the infusion and can be stopped quickly. Very few side effects occur after the infusion. I was one of the rare ones who did have a reaction three weeks after the first infusion - serum sickness. It was an awful thing to go through, but I've been in remission for 6 years.

As for Bloodwell: I've been on this site nearly every day for about 14 years and have seen many people try it. I think only one or two people have claimed that it worked. If it is working great for a lot of people, they must only tell their great experience on the Bloodwell site because they surely don't mention it here.

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Re:BloodWell supplements 11 years 8 months ago #13861

  • wildflower
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Thanks for your input and well wishes. I am leaning more toward Rituxan, but I feel I should at least give Bloodwell a chance to work. I'm planning to give it two more months. If I don't see any improvement, I feel the choice will be obvious as to what I need to do. You're right about their testimonials, they are all positive. I called the representative at Bloodwell and was given the stats of 70% seeing positive results. I don't recall seeing that on their website. I also asked if there was any trend, and was told there was not. So, it is "hit and miss" apparently. I wish rituxan came in a pill instead of an infusion. Thanks again. I'm glad you are both in remission. That gives me hope.

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BloodWell supplements 8 years 6 months ago #41685

  • lazarus
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Hi I used blood well/restore immune about 7 years ago and i believe it helped definitely. I was stagnant at 20 for years and I started taking them and i was up to 50. A big jump for me. From there I have other theories about my eventual improvements and success into remission which occured 4 years ago :). That's why I am back on the forum to give some people ideas and express opinions in hindsight

I think if you take them properly and consistently for about 6 months you will notice improvements definitely.

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BloodWell supplements 7 years 1 month ago #51581

  • pamliu
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I just joined PDSA. Did anyone tried BloodWell supplement recently? Thanks. Pam

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