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How to treat a chronic infection while being treated for AIH??

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Posted 1/15/2010 8:40 PM (GMT 0)
I'm very concerned because I recently tested positive for Lyme disease and will be seeing a Lyme disease specialist tomorrow. I'm really worried that they will tell me I have to get off of ALL immunosuppressant drugs: prednisone, Imuran, plaquenil, etc in order to effectively fight Lyme!!

I saw my hepatologist this morning and discussed it with him; he says that he would prefer that I stay on either prednisone (at 5 mg, half of my current dose) or Imuran (at 50 mg, half of my current dose). He wants the Lyme doc to call him to discuss my situation.

Also, I know that they put you on TONS of antibiotics for months on end....some antibiotics can be very dangerous and harmful to the liver! So I'm worried. shakehead

Has anyone else gone through this? Not necessarily Lyme disease but having to deal taking strong antibiotics and having to wean off immunosuppressants to fight an illness?

JoAnn
Posted 1/15/2010 8:49 PM (GMT 0)

JoAnn, I'm sorry to hear you have Lyme disease.  I think the two doctors should hash it out.  I'm sure your hepatologist will voice his concerns to the doctor who will treat your Lyme disease.  You should also express your concerns to both doctors.  Hopefully, they will come up with something that will treat the Lyme while also treating the AIH, with the goal of putting as little stress on your liver as possible.

Hugs,

Connie

Posted 1/15/2010 10:22 PM (GMT 0)
Thanks Connie! I'm hopeful of a good outcome, but still a bit scared because of the mortality rates I've seen for "untreated" autoimmune hep. Mine might end up being untreated for a while.

I'll try to let go and trust the doctors.... :)

(((hugs)))
JoAnn
Posted 1/17/2010 10:32 PM (GMT 0)
Quick update: saw the hepatologist on Friday and the Lyme disease specialist on Saturday. The hepatologist says that he is OK with reducing/eliminating either the pred OR the Imuran, but not both. He would prefer that I stay on either 5 mg pred or 50 mg Imuran (right now I'm on 10mg pred and 100 mg Imuran). He wants to talk to the Lyme doctor about treating me simultaneously for Lyme and AIH.

The Lyme doc says yes, I do have Lyme disease. :(

Also, that the goal is to eventually get me completely off the immunosuppressants (I think that the hepatologist would agree with that), but for the moment I can continue taking the pred and Imuran as prescribed. The plaquenil I take (another immunosuppressant prescribed for my lupus) is actually good for someone with Lyme disease, because one of the possible co-infections I might have contracted is Babesia, which is similar to malaria, and plaquenil was originally developed as an anti-malarial drug. They're testing me now for co-infections.

I'm now on Doxycycline for the Lyme....keeping my fingers crossed that all goes well!
Posted 1/17/2010 11:23 PM (GMT 0)

JoAnn, it is just truly awful that you have one more disease to add to your list and one more med.  I hope you can get the Lyme out of your body fast!

Healing thoughts and hugs,

Connie

Posted 1/17/2010 11:41 PM (GMT 0)
I have had Lyme Disease twice and Babesiosis in conjunction with the second time I had Lyme. The antibiotics for Lyme usually don't need to be taken for months at a time unless it's been festering for a while. The Babeosis drugs take a week to work, so that's not too bad. Make sure you go see a doctor who's experienced in tick borne diseases, such as those at Yale. I live in an area where ticks are omnipresent and almost everyone I know has had one, or all of the three diseases (#3 is Erlichiosis). My PCP has been treating patients with these diseases for over 20 years and I feel fortunate to have him. He's also been a gem helping me through Hep C treatment and then a liver transplant 6 months ago. **David**
Posted 1/17/2010 11:58 PM (GMT 0)
Thanks for the replies, Connie and David!

Connie, I hope that once I've been treated for Lyme that some of my autoimmune disorders will go into remission....that would be wonderful!

David, I'm seeing a LLMD (Lyme-Literate MD) who is affiliated with Igenex labs, one of the top Lyme testing labs in the country, so I'm confident he knows what he's doing. There aren't very many LLMDs on the West Coast, but he's one of the best.

It must have been tough having Lyme twice.....in addition to Hep C and a liver transplant! You've really been through a lot!

(((hugs)))
JoAnn
Posted 1/21/2010 11:38 PM (GMT 0)

Hi JoAnn,

Sorry to hear about the Lyme disease.  I'm in SD and we've actually been having weather so I''ll say, when it rains, it sure does pour, doesn't it?  I hope the treatment works out and you treat the Lyme and don't have a flare.  My fingers and toes are crossed!!tongue 

Let us know how you're feeling and doing!

Posted 1/21/2010 11:46 PM (GMT 0)

DGinSD said...
Hi JoAnn,

Sorry to hear about the Lyme disease. I'm in SD and we've actually been having weather so I''ll say, when it rains, it sure does pour, doesn't it? I hope the treatment works out and you treat the Lyme and don't have a flare. My fingers and toes are crossed!! tongue

Let us know how you're feeling and doing!

Hi Dany...thanks for your good wishes and support!

Yes, I'm in Northern LA County (foothills of the San Gabriel mountains) and it's pouring rain here too! It's so cold the snow line isn't far above us so you can feel the snow in the air, even though it won't actually snow this low.

I'm on 400 mg of doxycycline per day for the Lyme now....here's hoping my liver can handle it! :)

Take care,
JoAnn
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