posted
Hi- I am getting worse again just when I thought I was finally getting better in mid-Nov.
I am on tons of immunosuppressant drugs for my ITP ( low platelets)..on 60 mg Prednisone, weekly Rituxan treatments ( these kill B cells I believe) and Winrho every 2 weeks or so. My counts are worse than ever lately..even the Prednisone seems to be not working well anymore.
So I was thinking that because my immune system is being so suppressed, the lyme acts up and I get sicker. I just feel caught in a vicious cycle here and I don't know how to get out!
I'm thinking about just stopping everything for awhile..the abx and all the ITP treatments and just see what happens..maybe my body needs to "reboot itself" somehow?
Any opinions/suggestions..knowledge of immunosuppression and lyme? Thanks much, Natalie
Posts: 87 | From Clarksburg, NJ, Monmouth | Registered: Aug 2005
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Well Natalie,
You're quite right about the prednisone causeing you're lyme to get worse...
I have experienced the same....
I do not know why your doctor is prescribing immunosuppresant drugs for someone with an active infection....
It's totally contrdictory...
I can agree with you about stopping everything for awhile... But it's not an opinion of a doctor or anything... Just someone who has had immunosuppressant drugs prescribed to him and gotten worse....instead of better...
I personally will never NEVER touch steroids or NSAIDS again.....
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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posted
Thanks Zman- it's not my LLMD that's prescribing, it's my hematologist..But I guess I have to try something when my platelet count is as 5000(that's dangerously low).
But I think the lyme tries to fight the depressed immune system and in turn, drops my platelets even more (along with all other stuff that goes low-rbc,hgb,mpv,etc. The only thing staying high most constant is my wbc --I imagine to try to fight off the bacteria.
Anyone else out there with opinions?Help- getting desperate..these weekly, sometimes 3 times a week hospital visits are getting old! Natalie
Posts: 87 | From Clarksburg, NJ, Monmouth | Registered: Aug 2005
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Natalie, What has your llmd determined ?
Does your hematologist know you have an active infection?
The WBC should have told him that!?
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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posted
Yes- he knows about the lyme but I guess he thinks when my platelet count is at 5k I don't have many alternatives. He also wants me to take my spleen out NOW but I am still against it-so is my lyme doc.
Now I just read about this big FDA warning about the Rituxan treatments I get for the ITP- I just had my 6th one yesterday. Apparantly, there is some fatal virus thing that can occur months after treatment. It's scary. I just want to get off all these drugs..I've had enough!
I still think I may have had LD at the time I got dx with ITP- I think there is a connection,but who knows? I jsut want both to go away! Thanks Natalie
Posts: 87 | From Clarksburg, NJ, Monmouth | Registered: Aug 2005
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