I'm going to an Infectious Disease doctor tomorrow for a follow-up visit. Our 1st visit was really more of a referral from my neuro-GI doctor to see if this ID doctor can help me.
My HHV-6 has gone way up since stopping my abx Labor day weekend (due to way too many side effects, especially weight loss.) The 10 day course of Xifaxan helped tremendously, as well as putting me on a better probiotic (VSL#3.) I love this probiotic.
I know that in the past few years, my CMV, EBV, Cpn, Myco, etc. have gone up and down ---- however, they were never really addressed. Maybe there's not much you can do for them, I don't know. Don't know if it's time for anti-virals or what?
At the present time, it seems as though the focus has suddenly become "we've GOT to get your 'destroyed' immune system healthy." The whole thing is just so frustrating.
I've got this cervical thing going on as well --- the neurosurgeon is strongly recommending surgery, along with my FORMER neurologist. I WON'T be seeing her EVER again. Long story.
I just off the phone with the nurse at the NEW, highly recommended neurologist that I'll be seeing Jan. 5th, if not sooner. My sister's friend, who is an oncologist at MD Anderson, basically hand-picked this neurologist for me.
She has clinical & research interests in the areas that are appropriate for me. Anyway, I need to concentrate on my Infectious Disease visit that I have tomorrow.........so, any specific things I should ask him? What tests should I ask about, etc.?
Any suggestions would be much appreciated!
Thanks so much, terri3boys
Posted by timaca (Member # 6911) on :
Hi terri3boys~
Here's my suggestion from a viral/bacterial standpoint. Do some reading at this link (you will likely need to become a member to read the posts):
This is a thread that I started at the HHV-6 forum about how to get tested at Focus Labs, and what tests to ask for. Ask the ID doctor that you will be seeing that you are concerned that various pathogens could be causing your symptoms. Explain that certain doctors, for example Dr. Montoya at Stanford (ID doctor), Dr. Chia in Torrence (an ID doctor), Dr Baseman at Univ of Texas San Antonia (mycoplasma expert) and Dr. Stratton at Vanderbilt (Cpn specialist) all think that pathogens can cause chronic illnesses in people.
Ask that you be tested for various pathogens, including, but not limited to: HHV-6 Enterovirus EBV Mycoplasma Pneumonia Chlamydia Pneumonia CMV Parvo
You can look at the list on the HHV-6 website that I posted...there are lots of tests.
You can refer the ID doctor to: www.hhv-6foundation.org He can view Dr. Montoya's and Dr. Chia's talks, among other physicians that spoke at the HHV-6 conference.
What is your HHV-6 antibody titer? You mentioned it had gone way up....
Good luck....I hope the ID doctor is open to what you have to say. If he is not familiar with this, (and few are) give him some space. Suggest he do some reading at the HHV-6 website, and view some of the videos and get back with you.
Best wishes, Timaca
Posted by terri3boys (Member # 12993) on :
Thank you so much, Timaca! Sorry I misspelled your name earlier.......
I read as much as a could on the links you provided in your response ----- whew, my eyes are tired and my brain is fried!
I printed out a lot of info to take to the ID doc tomorrow. I have no idea if he's going to order any blood work, or shoo me off to another doctor!
I'll keep all of this info with me regardless. I know ONE of my doctors will be testing me more!
I really appreciate your help and I hope you are doing better.
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