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Posted 4/14/2017 12:29 PM (GMT 0)
Has anyone here dealt with Lyme and HIV coinfection? I have tested positive for both including Bartonella and was wondering the course of action for such things. Thank you.
Posted 4/14/2017 1:05 PM (GMT 0)
I appreciate the response.
Posted 4/14/2017 2:42 PM (GMT 0)
You will need a doctor that is well versed with both of these things. It's going to be tricky to deal with both, but a good doctor will be able to help you through this.

And, I"m so sorry!
Posted 4/14/2017 4:11 PM (GMT 0)
M Lowe - have you been treating lyme disease since your diagnosis?

Have you discussed this with your LLMD?
Posted 4/14/2017 8:28 PM (GMT 0)
I was diagnosed a week ago after a risk factor day. I'm literally already having flared symptoms. Can't take this, just started making progress on my lyme and I have this to deal with now. Have never heard of anyone having coinfections of these things.
Posted 4/14/2017 8:30 PM (GMT 0)
No, I had my first talk with my LLMD two weeks ago. I've just now gotten this. Not happy with myself for sure.
Posted 4/14/2017 8:41 PM (GMT 0)
The truth is that for some, these infections will damage their immune system to this level. You will need to be careful to not overload your body with anything, if the one person that I do talk with that has this same issue is 'typical' of this situation. This is why you either need one really good LLMD or a good LLMD and a good HIV doctor that will both work closely together to help you. I would encourage you to start with addressing this with your LLMD though.
Posted 4/14/2017 8:48 PM (GMT 0)
You know somebody else with this same issue? If so could I talk to him/her?
Posted 4/14/2017 8:52 PM (GMT 0)
M Lowe, you might want to adjust your user name if that is your real name. The forum is public, and can sometimes draw strange people out of the woodwork. First name and first last name initial would be enough.

Post Edited By Moderator (Girlie) : 4/14/2017 4:15:08 PM (GMT-6)

Posted 4/14/2017 8:53 PM (GMT 0)
For sure. How do I do that?
Posted 4/14/2017 8:54 PM (GMT 0)
Click on 'My Profile' then "Edit Profile" and go down to 'display name' and you can change it there.
Posted 4/14/2017 8:59 PM (GMT 0)
Thank you, changed it, should come into effect soon. Any other guidance would be apreciated. I was very disappointed when this happened and realized it may exacerbate my symptoms... week 2 and it definitely has. Definitely not enjoyable. Appreciate any responses.
Posted 4/14/2017 9:03 PM (GMT 0)
Maybe if you log off and log back in - the name will change?

Sorry you're having to deal with this on top of Lyme disease.

There is a LLMD who is also an Infectious Disease Dr. and used to treat patients with HIV/Aids.
Now he treats lyme disease.

His clinic is in Washington, DC. - don't know if that's an option for you.
Posted 4/14/2017 9:03 PM (GMT 0)
Yes your name change worked...
Posted 4/14/2017 9:14 PM (GMT 0)
Here is Dr. J's website:

jemsekspecialty.com/drjemsek/

You can read about his background.
Posted 4/14/2017 10:03 PM (GMT 0)
Not surprisingly, HIV and Lyme patients both have antibodies the a substance called "pam3cys". Its a triacylated lipoprotein and that's why we have immune suppression. HIV patients have a T cell disease, and Lyme patients have a B cell disease. pam3cys is on the lipid end of OspA. It's always been known to cause irreversible immune suppression.
Posted 4/14/2017 10:16 PM (GMT 0)
I edited any posts that still had his name...and changed to M. Lowe.
Posted 4/14/2017 10:20 PM (GMT 0)
M. Lowe -

I second the recommendation for Jemsek. Probably isn't another specialist quite like him. Maybe your LLMD can reach out to him too.

Hang in there. Help is on the way..

Ask any questions you may have - hope we can help.

-p
Posted 4/15/2017 12:06 AM (GMT 0)
I live in WA state unfortunately.
Posted 4/15/2017 12:08 AM (GMT 0)

M. Lowe said...
I live in WA state unfortunately.

This may not even be doable for you (is that a word?) - but Dr. Jemsek sees patients from all over the world.
You fly there and see him for an initial consult...and then you don't need to go back for several months. He will send you away with a protocol...and I believe at the 3 or 4 month mark you have a phone consultation...

just wanted you to know that it most likely wouldn't be monthly visits.
But, I do realize flying across the country is a big expense.
Posted 4/15/2017 12:17 AM (GMT 0)
Consider rife and bvt ...antiretrovirals can be had on all day chemist ...
www.huffingtonpost.com/2013/03/09/bee-venom-kills-hiv-cells_n_2843743.html
Posted 4/15/2017 12:21 AM (GMT 0)
The other possibility would be to find a more local doc to work with whoever you choose to see.

By the way, IHL is the other person that I said about knew with immune destruction happening. I asked her to read this thread. She's so wonderful to try to help those she can, even though she's incredibly ill herself.
Posted 4/15/2017 11:56 PM (GMT 0)
If I treat the HIV soon enough will my immune system be fine?
Posted 4/16/2017 12:12 AM (GMT 0)
M.Lowe - I don't know enough about HIV to comment. I think treatment for HIV has come a long way, though - but if you can possibly find a way to see Dr. J. who knows both HIV treatment and Lyme treatment that would be best.

..if not...then seek out another LLMD and discuss your concerns.
Posted 4/16/2017 12:19 AM (GMT 0)
M. Lowe -
MANY, many people are living perfectly normally with HIV. And as G mentioned, treatment has evolved significantly in the past 10 yrs. Th key is to partner with a good specialist. And take very good care of yourself.

-p
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