Procrit to treat Mold Illness

Discussion in 'Fibromyalgia Main Forum' started by colburnhom, Jan 27, 2010.

  1. colburnhom

    colburnhom New Member

    Hi I have a biotoxic illness and have been told by a mold specialist that I shoudl use Procrit shots every 4 days, and that this new treatment will help protect me from reexposure to mold, and help me get better now by decreasing the number and severeity of my symptoms.

    Has anyone else heard of this or is anyone else using this.

    I used it for a 3 week trial with my mold specialist (Dr. Ritchie Shoemaker) at his office in Maryland and it really helped me, but I can't get a Doctor where I live (Southern California) to prescribe it to me since it is usually used for Anemia.

    Any info would be great!

    Thanks and God Bless!
  2. conlyn

    conlyn New Member

    Hi Colburnhom,

    I have a mold/biotoxin illness and am a patient of Dr. Ritchie Shoemaker, as well. I've used the procrit protocol for a while, it has helped due to the neuroprotective properties and can possibly reduce inflammatory markers, everyone's response is individual. Plus, it may be also be important for the success of other protocols to help people like us.

    Not to be negative; but you probably will not find a doctor that will manage the protocol...biotoxin illness is complicated and uncomprehendable to most doctors...and it may not be a good idea to continue with another for your own safety. It is "black box" labeled for use as prescribed... our use of the drug is "off label". Many doctors may try to scare you out of the treatment and not want to get involved. I had a hard time finding medical support in my local area as well, not only for the procrit, but the illness in general, you are not alone there.

    I would suggest you stick with Dr. Shoemaker to prescribe it and monitor your related labs. You can monitor your hemoglobin locally and folllow the protocol with whatever other treatments you can do.

    Dr. Shoemaker is brilliant and the best doctor for biotoxin illness, he does significant research to find treatments and help improve our quality of life and has a great team behind him.

    Unfortunately, I have been at fighting mold/biotoxin illness for quite some time with the "dreaded" genotype. If you have questions, feel free to let me know.

    Best..
    conlyn
  3. GoWest

    GoWest New Member

    Were you tow anemic before starting Procrit? If you had high iron levels would that be a reason to not take Procrit?

    Did Questran help you?

    Are you able to avoid mold and thus lower your symptoms?

    Paula Carnes
  4. conlyn

    conlyn New Member

    Hi Paula,

    Berfore I started Procrit I was not anemic, I do have a low WBC, normal RBC and am not anemic now either, normal iron though sometimes does fall low on labs.

    If you have normal hematocrit, I would think your iron would be normal, as you raise hematocrit with with procrit, your iron may be increase. While monitoring, you will stop it around 15.5 hematocrit to avoid polycythemia symptoms...that can make you feel quite ill.

    I have used Questran, Cholestrymine and Welcol. They do help on exposures detoxify the mold toxin, depending on your genotype, if you are sick with mold you probably have one of the mold HLA-DQ3 genotypes. It has not cured my condition, but helps on re-exposure...seems it helps others more than myself in talking to others. Does it help you?

    Avoiding mold after high level exposures for long durations and a unrecoverable HLA-DQ3 make it hard for not get symptoms on re-exposure...after that priming it is impossible not to get symptoms on re-exposures, there are so many moldy places...I usually have problems when I venture out to unfamiliar places. Within 5 minutes my immune system will start reacting and I will get quite sick on re-exposures even getting out right then. It is hard with the chronic illness in of itself and then getting re-exposed. I have never feel well as I did before mold, but I get sicker quicker on re-exposures still. I don't get out too much because I have literally no energy most days, if I am okay or not and go out and mold usually finds me. How do you do with avoiding mold and symptoms? Are you doing the procrit treatment? I have to say, it does help with neuroprotection and helps to not worsen the illness, however it is not a "cure." I would do it again. I am not currently using it, though I may need to get back on it per doctor. I am using VIP now as much as I can, as $$$, not sure if you are familar with that?

    Struggling with mold illness/chronic fatigue is incredibly difficult for me, constantly up and down while staying as positive as I can, hoping time is on our side and our healthcare teams will find better solutions to restore our health/lives.

    I hear people do better with this in Arizona and out West. Not sure. I would like to get out there, for now I am stuck in the Midwest.

    conlyn
  5. floyd000

    floyd000 New Member

    Hi Conlyn,

    I am also a patient of Dr. Shoemaker's. I may be reaching the end of what Dr. Shoemaker has in his bag of tricks with the exception of VIP (his words). I have not heard ANY positive stories about improvement with VIP. Please, please keep us up to date on your experience with VIP.

    Thanks for reminding me of Procrit. I am not sure why Dr. Shoemaker hasn't prescribed this to me.

    Floyd
  6. krock

    krock Member

    I have been on CSM for a year. My C4a and tgf have come down from their super sky high numbers, but are still quite high. When I first saw Dr Shoemaker, he indicated that once he saw me in my first visit in the office, he could continue to treat my by phone. But the last time I called the office, they told me he would not treat me by phone anymore and that I had to come back in. But I cannot afford to travel again to see him. So I don't know what I'll do once my current CSM prescription runs out.
  7. Forebearance

    Forebearance Member

    Thank you for sharing your experiences, colburnhom. I'm always interested to hear what Dr. Shoemaker's patients are taking or doing. Procrit sounds interesting.

    I've tried VIP but it makes my mold sensitivity go way up. I've already increased my mold sensitivity and reactivity a lot by practicing mold avoidance. I have more energy living this lifestyle, but it is much harder for me to find safe buildings I can stand to be in.

    Otherwise, I got the feeling that the VIP would help me if I were able to tolerate it. Perhaps if I were sleeping outdoors in a place with "good air", I could handle it.

    Forebearance
  8. pmalowe

    pmalowe New Member

    Hi,

    I just read Dr. Ritchie Shoemaker's book and want to go see him. I've had CFS/Fibromyalgia/MCS for over 20 years. I've been exposed to mold and think it's almost impossible to avoid it in most buildings. Do his methods really work? I am traveling from LA county and want to make sure it's worth it and that I can truly do follow up appointments with him by phone. Someone closer maybe Dr. Nathan Neil in Santa Rosa. Anyone know if he follows Shoemaker's protocal?

  9. pmalowe

    pmalowe New Member

    Has Dr. Shoemaker helped you at this point?

    I just read Dr. Ritchie Shoemaker's book and want to go see him. I've had CFS/Fibromyalgia/MCS for over 20 years. I've been exposed to mold and think it's almost impossible to avoid it in most buildings. Do his methods really work? I am traveling from LA county and want to make sure it's worth it and that I can truly do follow up appointments with him by phone. Someone closer maybe Dr. Nathan Neil in Santa Rosa. Anyone know if he follows Shoemaker's protocal?
  10. pmalowe

    pmalowe New Member

    Hi,

    I just read Dr. Ritchie Shoemaker's book and want to go see him. I've had CFS/Fibromyalgia/MCS for over 20 years. I've been exposed to mold and think it's almost impossible to avoid it in most buildings. Do his methods really work? I am traveling from LA county and want to make sure it's worth it and that I can truly do follow up appointments with him by phone. Someone closer maybe Dr. Nathan Neil in Santa Rosa. Anyone know if he follows Shoemaker's protocal?
  11. pmalowe

    pmalowe New Member

    Have you been able to do follow up appointments by phone? Are you feeling better?

    I am thinking of seeing him. I'll have to travel from LA.

  12. Forebearance

    Forebearance Member

    Hi pmalowe,

    You know, I would recommend Dr. Gordon in Santa Rosa. He knows all the theories Dr. Shoemaker has developed. As far as I know, he can prescribe everything Dr. Shoemaker can.

    He would be a lot closer to you. And he is a really nice person. And since he is not the one who invented the protocol Dr. Shoemaker uses, he is able to be more flexible with it and to personalize it to you.

    I really like him.
    Good luck!

    Forebearance
  13. pmalowe

    pmalowe New Member

    Forebearance,

    Thanks for your reply. Dr. Gordon's name came up when I did a web search. It appears that he and Dr. Nathan hosted a conference about biotoxins w/Dr. Shoemaker. Unfortunately, he isn't taking new patients. And Dr. Nathan is booked until July 30. Other doctors in the office (Dr. Large and Dr. Anderson) supposedly know the mold protocal. I can see one of then in the next week or so. It's hard to tell how good they are just from the website. I'll just have to pick one. I don't want to wait 6 weeks to see Dr. Nathan cause they tell me it will take 4-6 weeks to get the test results.
  14. Forebearance

    Forebearance Member

    Hi pmalowe,

    I think I would trust anybody at that practice. I have only "met" Dr. Gordon over the phone, but the office staff I have talked to have been very nice and I bet all the other doctors there are good.

    Good luck on getting the help you seek!
  15. mcovey

    mcovey New Member

    Pmalowe, check Dr Chitra Bhakta in Santa Ana or Dr Michael Powell in Sacramento.