posted
Hi-is anyone here spleenless and dealing with lyme?
Just wondering because my hematologist is pushing for a splenectomy because my ITP (low platelet count) is not responding to any treatments, and this is one of the "last" options.
I am concerned because I am not totally convinced that I don't have any co-infections-specifically the babesiosis and it is risky for spenectomized people. ( I did have my doc run more tests yesterday thru Igenex, so I am waiting for those).
So just wondering if anyone out there has no spleen and chronic lyme? Thanks Natalie
Posts: 87 | From Clarksburg, NJ, Monmouth | Registered: Aug 2005
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posted
I would get treated for babesia first. Surgery as a last resort. Don't rely on tests to determine if you have it.
Just the fact that you are having trouble with it may point to babesia.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi Natalie. It's good to hear from you again!
If there was even a miniscule chance of having babesia, I would not part with my spleen. And because only two kinds are able to be detected even by IGeneX, a negative wouldn't give me the assurance I needed. Having tickborne diseases confers too high a risk, in my opinion.
Do you have an LLMD? If so, I think his/her opinion is sorely needed.
What meds have you been on other than doxy and biaxin? What other coinfection tests have you done?
I'm not a doctor, of course. It's just that babesia fatalities are almost always associated with asplenic patients. And babesia can hide under layers of lyme infection -- i.e., people sometimes test negative, then later test positive.
I'd work on rehabilitating, not removing, the spleen.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
Thanks everyone for your replies. It seems that most people I've talked to- here and on my ITP site-are against it with everything I have going on.
Yes I have a wonderful llmd and she is hesistant at this point. Like I said I am awaiting the test results, although I still don't know what I'll do.
The only thing is my platelet count is critically low right now- I'm at 5000 ( normal is 150,00-450,000). I have terrible bruising. The worst part is my hematologist now has me on 60mg of Prednisone, which I DON'T want to be on with the lyme, but I don't have much choice right now. I also think he is just "done" trying to treat me, and wants me meeting with surgeons.
And just when I thought I was finally getting some relief from lyme with this new drug combo (Plaquenil & Doxy)that seems to be working. I feel better now than I have in a long time (I had 8 "good" days in a row)which is a record since last Feb. I am doing better now I think than when I was on the IV, and other abx so for me that's wonderful!
I still think my lyme and ITP are related somehow and once I get the lyme under control, I will stabilize. Although I can't help but wonder as well if maybe these new abx ( mainly the plaquenil) can be contributing to my really low counts?
It's just so frustrating-dealing with both- I just gotta find a way to get these both under control. Thanks everyone, Natalie
Posts: 87 | From Clarksburg, NJ, Monmouth | Registered: Aug 2005
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
Plaquenil will definitely hit babs and help the doxy penetrate further. If there's anyway to keep doing babs treatment without jeopordizing your life, that would be the ticket.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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charlie
Frequent Contributor (1K+ posts)
Member # 25
posted
I think 'happlycarlessdave' is without his spleen and has lyme and babs...I don't know his member#...but you might contact him although I bet he'll see this thread...he doesn't miss much, nor do I.
Charlie Posts: 2804 | From Texas | Registered: Oct 2000
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