My first appointment with Dr Susan Levine

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@nryanh94
My experience with Dr Levine was basically the same as yours.
Some diferences:
-She wants me to start Valcyte because I have high IgG CMV titers
- She didn´t recommend me any specific diet, I´ve been on a gluten free, low carb diet for more than a year.

Did she ask you to do a breath test for disbiosis?
She asked had I completed a breath test and I told her no, but never ordered one. I did have pretty extensive lab work from my gut though.

I may very well end up on valcyte depending on how my lab results come back/ but right now Valtrex is kicking my butt.

As for the diet, she only made those suggestions because I asked her was there any specific diets she reccomended
 

Learner1

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Her recommendations look really good, im being seem by Dr. Kaufman in California and a naturopath in Seattle.

Did she do anything to measure oxidative or nitrosative stress, i.e. looking at levels of NO, nitrotyrosine, glutathione, alpha lipoic acid or vitamins, A, C, and E? At the March Clinician's Summit, huge oxidative stress was something all the clinicians agreed on...

Taking glutathione and BCAAs pre-and post-exertion has helped my PEM considerably, and I take higher doses of all the antioxidants as they are usually depleted.

And, as she recommended lysine, citrulline and the BCAAs, did she do a full amino panel to see whst yoir status of tyrosine, tryptophan, methionine, glycine, glutamine, cysteine, taurine, and histidine are? Thry may all play roles.

Sounds like you've got a great initial plan and good luck with your treatment!
 
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Her recommendations look really good, im being seem by Dr. Kaufman in California and a naturopath in Seattle.

Did she do anything to measure oxidative or nitrosative stress, i.e. looking at levels of NO, nitrotyrosine, glutathione, alpha lipoic acid or vitamins, A, C, and E? At the March Clinician's Summit, huge oxidative stress was something all the clinicians agreed on...

Taking glutathione and BCAAs pre-and post-exertion has helped my PEM considerably, and I take higher doses of all the antioxidants as they are usually depleted.

And, as she recommended lysine, citrulline and the BCAAs, did she do a full amino panel to see whst yoir status of tyrosine, tryptophan, methionine, glycine, glutamine, cysteine, taurine, and histidine are? Thry may all play roles.

Sounds like you've got a great initial plan and good luck with your treatment!
I’m not certain what labs she ordered i’ll have all of those Monday. The BCAA levels I already had completed on a nutreval test, as well as all of the vitamins/ other cofactors you mentioned. She did want to check glutathione again and reccomended that depending on results we use a prescription nasal spray.

The lysine reccomendarion, at least for me I believe was less to do with my blood work and more to do with my EBV titres and lysines effect in them.
 

Learner1

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Great! The NutrEval should cover all but the NO and nitrotyrosine, which would indicate peroxynitrite production which can damage mitochondrial membranes and impair complex I. I asked as she was recommending some mitichondrial support, and I wish I'd had mine checked a lot earlier on.

Sounds like you're on a great path!
 
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Had a call today with Dr. Levine to discuss some of my blood work. I have elevated HHV - 6 as well as elevated histamine along with some other things. I will most likely have to switch from Valtrex to valcyte, although she is leery in my case, and will be starting treatment for Mast Cell Activation Syndrome. Which I know nothing about.

So we will be attempting to treat EBV, HHV 6 and MCAS. I fortunately do not have POTS
 
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@nryanh94 youve sad youve had pretty extensive Gut lab work. Could you share what test did you do and what results did you have? If you found them useful for you? My case is heavily rooted in the gut but latesttests barely able to identify something.
 
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Hi @nryanh94, I have an upcoming appointment with Dr. Levine. The appointment is $450. Did you have to pay out of pocket for anything else (aside from the supplements she recommended)? You mentioned that she charges the blood work to your insurance (even if she doesn't take it) so the insurance covers that, correct? I'm trying to prepare cost-wise. Thanks and happy new year!
 
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Hi @nryanh94, I have an upcoming appointment with Dr. Levine. The appointment is $450. Did you have to pay out of pocket for anything else (aside from the supplements she recommended)? You mentioned that she charges the blood work to your insurance (even if she doesn't take it) so the insurance covers that, correct? I'm trying to prepare cost-wise. Thanks and happy new year!

She did bill it through my insurance though I’d double check if she still does as those things change. I will say that while the appointment and recommendations were great my follow ups with her were not. I think a lot of this is due to her being overworked but I had to constantly remind her of things she said we should try, and constantly ask for refills. She’ll request that you do a phone consultation (this can last 5 minutes or 30) but she’ll charge you $100 no matter the outcome, in addition if you email her and ask for refills she’ll bill you $75. She’s a good Dr I just think she has to many patients to work with on top of her research. I’d talk over with your GP beforehand and see if they will continue to prescribe you the meds that she recommends during the appointment as to avoid the continued fees.

Also note that she kind of just stops communicating with you after awhile if you don’t live in NY
 
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She did bill it through my insurance though I’d double check if she still does as those things change. I will say that while the appointment and recommendations were great my follow ups with her were not. I think a lot of this is due to her being overworked but I had to constantly remind her of things she said we should try, and constantly ask for refills. She’ll request that you do a phone consultation (this can last 5 minutes or 30) but she’ll charge you $100 no matter the outcome, in addition if you email her and ask for refills she’ll bill you $75. She’s a good Dr I just think she has to many patients to work with on top of her research. I’d talk over with your GP beforehand and see if they will continue to prescribe you the meds that she recommends during the appointment as to avoid the continued fees.

Also note that she kind of just stops communicating with you after awhile if you don’t live in NY
thanks @nryanh94 for the detailed and quick reply! Fortunately I do live in NYC. How long after the appointment does she request you have the phone consultation?

How have you been feeling since starting the meds/supplements? Is there a great improvement in your symptoms?
 

debored13

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She did bill it through my insurance though I’d double check if she still does as those things change. I will say that while the appointment and recommendations were great my follow ups with her were not. I think a lot of this is due to her being overworked but I had to constantly remind her of things she said we should try, and constantly ask for refills. She’ll request that you do a phone consultation (this can last 5 minutes or 30) but she’ll charge you $100 no matter the outcome, in addition if you email her and ask for refills she’ll bill you $75. She’s a good Dr I just think she has to many patients to work with on top of her research. I’d talk over with your GP beforehand and see if they will continue to prescribe you the meds that she recommends during the appointment as to avoid the continued fees.

Also note that she kind of just stops communicating with you after awhile if you don’t live in NY
Ahh, so it’s not just me!! Yes I think she takes on too many patients and has a small and overworked office staff. She’s a good researcher and was better than my pcp but I need to find a doctor who can actually spend time on my case. Although I’ve wondered if she would be more helpful if I was in nyc.
 

debored13

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I posted about this in other thread but basically it seems like if you want to try something that would require a fight with insurance to get it covered, she just changes her mind and doesn’t want to do it. This has happened with a couple things for me. She did do a lot of labs and was helpful with some things. The most helpful thing she prescribed was iv saline. In fact you can get iv saline in the back room of her office
 
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Levine originally recommended IVIG for me based on low overall IgG/etc but then she changed her mind, i'm not sure why... good doctor but maybe overworked/stretched thin, so communication is very tricky with her
I have found her communication to be deplorable. She is scattered sending me multiply emails asking for the same info over and over. She could not finish my appointment -- that I traveled to see her form very far away -- because she had to be somewhere else. She wanted to follow up by phone and she missed that appointment. She never called in my script. In her emails she was short, rude, and had extremely poor sentence structure and grammar. It was beyond the pale. My emails with Dr. Lapp, who was not even my doctor, where far superior. Of course he is retired so perhaps he is not as over-allocated like Levine is. After speaking to a number of patients who had similarly bad experiences with her, I decided I was not going to put up with all of this nonsense. I left her practice and refused to pay my bill as we never did have a proper appointment. I do not need this anxiety! Dr. Lapp welcomed me to come to Hunter Hopkins.

@Alenka if you still want to see her, you can try emailing her for an appointment.
 
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@I am Phoenix Sorry to hear about your experience :/ that sounds super frustrating. We are paying out of pocket for this and many travel from far away. It's good you found another doctor. I hope my appointment with Dr. Levine is not the same. Dr. Lapp is retired but is he still seeing patients as you said?