• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Has anyone ever seen Dr. Bateman?

Messages
35
Has anyone ever seen Dr. Lucinda Bateman? I'd love to hear your experiences, especially if you've had to travel for the appointment. I'd like to know if you felt that the travel was worth it. Is she well-rounded and focuses on all aspects of the disease, or is she more focused on one thing (such enteroviruses, or rituxan, etc).

Thanks!
 
Messages
56
Location
Brisbane
I thought you meant Patrick Bateman

American_Psycho_04.jpg
 

LaurelW

Senior Member
Messages
643
Location
Utah
I'm Dr. Bateman's patient. She doesn't focus on one particular treatment. I didn't have to travel to see her since I live in the same city.
 
Messages
35
Boost Hahaha thanks for the much needed laugh!

LaurelW Can you tell me more about your experience with her? What do you like and dislike about her? Does she also help take care of autonomic and sleep disorders, and all the other stuff that comes with ME? Has she helped you? What kind of treatments does she do? Has she done extensive testing for you? I would like to know more about her and she doesn't seem to be mentioned much here on these forums, other than her advocacy and research. If you prefer to tell me in PM, that would be fine too. thanks!
 

Gingergrrl

Senior Member
Messages
16,171
I was wondering if anyone knows if Dr. Bateman prescribes anti-virals (for patients with high viral titers) or if she takes a different approach? I did a site search and couldn't find anything. I am not going to be seeing her but am very curious from a discussion in another thread and from reading a talk that she gave. If she does not do anti-virals, what is her treatment? Thanks for any info.
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
Here is the statement from OFFER Utah's site explaining her policy on infections:

While subject to debate, the idea of secondary infections or viral reactivation in the setting of CFS/FM remains important to many providers, perhaps because empiric treatments sometimes seem to help.

As long as antibiotics are used chronically for acne and long term prophylaxis for herpes is acceptable, it is probably within the bounds of reasonable medicine for an individual physician to empirically prescribe an antimicrobial for their patient with CFS or FM.

If such a decision is made, it should be done with caution, monitoring both for positive effects and for potential adverse effects.

Potential situations include the use of antivirals or atypical antibiotics when a specific organism is suspected such as mycoplasma, Chlamydia, Lyme, herpes viruses, etc.

(I reformatted.)
 

Gingergrrl

Senior Member
Messages
16,171
@WillowJ Thank you for all the info and is "Offer Utah" Dr. Bateman's own site? I do agree with her that anti-biotics and anti-virals should not be given out lightly (especially if the person has not actually been tested and shown to have specific infections first.) I also agree that they should be monitored carefully for both positive and adverse effects. It sounds like she does prescribe them (or at least approves of them) in specific cases.
 

SOC

Senior Member
Messages
7,849
@WillowJ Thank you for all the info and is "Offer Utah" Dr. Bateman's own site? I do agree with her that anti-biotics and anti-virals should not be given out lightly (especially if the person has not actually been tested and shown to have specific infections first.) I also agree that they should be monitored carefully for both positive and adverse effects. It sounds like she does prescribe them (or at least approves of them) in specific cases.
My question for Dr B would be what she considers to be test results that indicate a need for antivirals. Many of us have seen doctors who go by the standard rule-of-thumb that if you have a low IgM and high IgG, that only means you had an infection in the past. They do not believe that chronic EBV, CMV, or HHV6 exist. They will only give AVs with a high IgM, indicating a new infection. If Dr B is one of those doctors (and yes, some ME/CFS specialists still think that way), then it will be the rare case where she will use AVs.

ME/CFS specialists who are experienced using AVs in PWME understand that that rule of thumb assumes a healthy immune system -- which most PWME do not have. Those specialists have more fine-tuned interpretation of pathogen tests and when AVs are needed in PWME. If Dr B works by those principles, then she will use AVs in many, but certainly not all, PWME.

To be clear -- I am completely opposed to using AVs just because someone has a CFS diagnosis. It's important to verify that there is a chronic infection. The issue that's in question is what criteria are used to verify a chronic infection.
 

Gingergrrl

Senior Member
Messages
16,171
@SOC Very well said and you summarized exactly what I was trying to ask (but did a better job LOL.) When my ND tested me for EBV, I had high titers of IgG, IgM, and early antigen (but it is well over two years since I had mono.) She said this was proof of either a chronic or re-activated infection of EBV and started me on the natural anti-virals as she does not prescribe the prescription av's. She did not test me for other viruses but now I've been tested for everything by Dr. K and waiting for results.

My confusion came when I assumed that all the true CFS experts prescribe av's (when appropriate) and then it seemed like Dr. Bateman does not (although I could be wrong about this.) I believe she is one of the true experts so I started to get confused and second guess myself. Thank you for the reassurance!
 

Gingergrrl

Senior Member
Messages
16,171
Is there much harm in trying antivirals without test results just to see what effect they have?

@knackers323 That is a very good question and I am afraid I do not know the answer but am going to post it in my other (long!) thread from yesterday to see if anyone knows. My gut instinct is with the av testing, you know which viruses you have and the Dr can choose wisely which av to prescribe (vs. doing it blindly.) Although if av testing is not available but av's are, I guess it couldn't hurt to try?