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Extremely Low Platelets - No Drugs

I have read that many natural herbs and/or mushrooms are historically known for their anti-viral properties, some of which have an effect on the Hepatitis C virus.  I have also found that specifically, the Reishi mushroom has had this anti-viral effect on HCV by boosting the body's own natural production of interferon.

HCV patients with extremely low platelet counts (in my case below 19,000) are denied traditional Interferon/Ribavarin treatment for fear that the Interferon will destroy the few remaining platlets I have, which I'm told could be fatal.

Question:  Could the "natural" increase of "natural" interferon in the body through Reishi or other anti-viral herb have the same destructive efffect on the platelets?  Should people with low platelet counts avoid these interferon boosting natural remedies?

If so, what hope do I have?  Doctor says he doesn't even know how I am walking around alive.  

Scared,

John
10 Responses
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Avatar universal
I don't know a lot about mushrooms but I do know we should be extremely careful with the so called natural remedies. Some of them are not liver friendly and some can interfere with other medications you may be taking. Mostof us here have come to the conclusion that unfortunately interferon and ribavirin is the only real approachto eradicating this virus. Some of us take milk thistle which many people believe protects against inflamation and can be of benefit. Others are not so sure about it, but of all the natural remedies this is probably the only one that has any support among informed people. Good luck. Mike
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Avatar universal
This seems to happen to others around the 24-week mark if you are continuing on to do 48 weeks or beyond. Maybe not this exact same thing, but similar situations with insurance companies and getting prescriptions refilled and approved. My 24-week pcr test shows clear and all of my blood levels are either within the normal range or very close to it.  I've been on Procrit since week 7 when my rbc count fell rapidly and drastically low.  I was put on Procrit.  I've continued to give myself the Procrit injection up to my 24-week point.  My prescription had to be refilled and sent back into my pharmacy, per my doctor.
The insurance company requested a copy of all my blood test results for the 24th week in order to approve my Pegasys and riba for another 6 months. My rbc level shows in a normal range on the 24 week testing so the insurance company doesn't want to approve another 6 months for my Procrit.  My GI, my pharmacy and myself have gone around and around with the insurance company for the past 2 weeks. Seems as though they will only approve and instruct the pharmacy to fill another prescription for the Procrit when my rbc level drops again, in a dangerous low level. I'm starting to feel out of breath, can't get my energy level in check and basically starting to feel like I did around week 7, before I started on Procrit. I had blood work done on Monday, and results came back that yes, my rbc level is dropping again. My GI called me yesterday with the results of the rbc and instructed me to go to the ER. He will order an injection of Procrit for me. My insurance will pay extra, higher $'s for me to go to the ER.
I was on this uphill climb and have been feeling pretty decent with treatment for a couple of months now.

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Avatar universal
Like this tx ain't hard enough - then you have to put up with the hurdles of insurance. Hang in there and good luck. Mike
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Speaking of insurance coverage I saw on the news today the new pre loaded needles that were just approved by FDA. Do you know if pegasys has it and is it covered? Britgirl said yesterday that is all they have there.
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Avatar universal
I don't know about that. I just had my script refilled and I got vials w/syringes like always. I seem to remember the pharmacist saying something about prefilled syringes and asking me if I wanted them. I really didn't care that much about it since I'm used to filling my own but I said it would be fine with me. Evidently I didn't get them this time, if they are even available. Mike
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Avatar universal
I posted the news story last week that Schering-Plough
got approval for a pre-filled pen it will be available in 2004. I use pegasys and it comes from "curascript" via FedEx, the last time they called to send refill the rep asked if I wanted pre-filled syringes, I said sure go ahead and send them. When I received them yesterday they were not pre-filled but the usual. After further discussion with " cura script" they told me "prefilled" are not available direct from manufacturer and they would have to prefill the syringes in their facility of which only the one in FL is equipped to do this and guarantee a sterile and stable product. Mine come out of NE so I can't get them, they also said the syringes are only good for 30 days and highly recommend staying with the original method.

Here is link to story on REDIPEN

http://biz.yahoo.com/bw/031013/135779_1.html
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Avatar universal
I really do not know anything about these anti-viral herbs you are asking about but we are dealing with low platelet counts (21,00 last blood letting) also. Hubby has had to skip 3 shots so far because of them. We are actively looking and praying for some advice or meds or anything that may possibly boost the count but that doesn't seem to be forthcoming. Our hep advocate told us of a woman with a 2,000 count so I don't think your doctor was very professional with his "don't know how you're walking around alive" statement. Shebee seems to be the only other person on this site that has platelet problems, I have asked mayn questions but she is the only one who assisted me, guess we are alone in this. Good luck to you
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Avatar universal
I am sorry to hear about your platelets being so low, and your inability to go on the standard Interferon/ribavirin treatment for your hep c. But your doctor saying he doesnt know how you are walking around alive, and not giving you any other advice or options???  Go find another doc! who can HELP you for REAL and not send you out of the office with no hope. If then after several searches of other doctors, and modern medicine cant help you then try alternatives, good luck to you in any case, as some have said they were helped by other methods.
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Avatar universal
Thanks.
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Avatar universal
RE: prefilled syringes. That's how mine came (Pegasys). I opened the package (I get them by FedEx) and had a moment of panic--where's the vial?
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