Doctor in NY who does comprehensive testing

[loayachil]

Good afternoon,

I live in th greater NY area, and am interested in going to one of the known doctors, Dr. Levine, Dr. Natelson, Dr. Enlander.
This has been asked in the past, although wihtout many responses, on which one to go to. And I am re-asking it.
My main concern is as follows: I have had CFS for 17+ years and started by going to eye doctors, general practitioners, nuerologists, sleap doctors, etc and then to a CFS doctor who was a follower of the Dr. Tietlbaum approach. The regular doctors just checked their basic lists and told me I was fine (sounds familiar). The CFS doctor tested only for that which fit his protocol. Until I bumped into this site recently (which is by by far the most comprehensive) I never heard of Leaky Gut, OI and Tilt Tests, endochronogy, etc. I know that Dr Levine and Dr. Enlander are immunologists and Dr. Natelson is a nuerologist. However, I am looking for a doctor that will test for everything, not just what is on their expertise. I am not angry at the CFS doctor I had seen earlier (for a few years) just disappointed that he only looked for what he knew of (vitamin deficiancy, etc) and never even mentioned that there may be other causes. I have been for the most part in the dark (because of no energy and no support) and I would like a doctor who is more comprehensive. When I have more energy I would like to write more to introduce myself and my symptoms, but a few years ago I wrote some of them in a forum here which didn't enlighten me much.

Thanks everyone,
Lo

 

[rlc]

Hi loayachil, RE

I live in th greater NY area, and am interested in going to one of the known doctors,

If you want to go to a doctor who will test you for everything that could have been missed there is a doctor in New York called Dr Shirwan A Mirza, he is not a CFS doctor however, he is a Endocrinologist, and a Clinical assistant professor at Auburn memorial hospital, but he has seen hundreds of patients who other doctors have diagnosed with CFS and claims that by testing them for things that other doctors don’t and by using new up to date reference ranges for a lot of tests that almost all other doctors are not using, he is able to find the true cause of their illness and cure them. He has written a couple of articles about this here http://www.bmj.com/rapid-response/2011/11/01/myth-chronic-fatgue-syndrome and here http://www.bmj.com/rapid-response/2011/11/01/chronic-fatigue-syndrome-nice-and-cdc-miss-boat and there are other articles by him which show his very up to date knowledge of many medical subjects on these pages http://www.bmj.com/search/shirwan%20a%20mirza

It sounds like you have never had a doctor who has tested you properly to look for all other possible causes of your symptoms, so Dr Mirza would be a good doctor to see to do this.

His contact details are

Endocrinology Diabetes Metabolism

399 Grant Avenue Rd Suite 1

Auburn, NY 13021

(315) 253-2669 (office)

Hope this helps

All the best

 

[justy]

Hi Lo, and welcome! I dont live in the US so dont have advice about doctors (although i would go and see Dr Enlander if i was there)

rlc makes a good point about misdiagnosis and finding other causes - if i had plenty of money i would also go this route first.

I read your symptom list from the link you gave and it looks very very similar to other people i know with M.E - including myself when i was more ill. The sleeping you describe with the conciouss dreaming and the breathing/chest problems are very common in M.E - I also used to have such a heavy head i felt i couldnt hold it up, and when i laid on the pillow my head would feel so heavy at the base that it hurt even more than holding it up.

Eye problems are very very common in M.E - no optician or eye doctor that i know of understands the eye issues we have. It is thought that the eyes have a high need for energy from the mitochondria to work - and one aspect of M.E seems to be a problem with mitochondrial energy so blurred vsison not corrected by glasses, eye pain, etc are again common. M.e is also a neurological disorder so could be affecting the eyes this way. My eye problems have at times mimicked optic neuritis - but i cant get a doctor inerested in this.
I have also been ill off and on for 17 years. I do hope you find a good doctor and some relief soon.
Justy x

 

[maryb]

lo I completely understand where you are coming from, all those years and nowhere, think there's good advice in ric's post. Re the eye thing justy is spot on - dr M-hill put it in terms of the eye is a muscle too and needs the energy to work which we don't have.I have had so much testing from opthalmics who can find nothing, not surprising, they are looking at the wrong things.
ric I think I read about Dr Mirza in a link you kindly posted regarding my test results . It sounds like he does do some conprehensive testing of the type it makes sense to do before going to a ME specialist. Given my TSH levels and the fact that 2 ME docs have prescribed thyroxine previously points me in the direction of a thyroid problem which hasn't been addressed properly. I am prepared to make one last trip so might consider Dr Mirza, and then if no better go on to see Dr Enlander. I've got to look at the possibility of spending a few months in the US in order to do this, which would be daunting but I can't do long distance doctoring, I've tried.

 

[Nielk]

Thanks Ric for the link for Dr. Mirza. Unfortunately, Auburn, NY is a 4 1/2 hour drive from the city NY.

In addition, I just took a look at the links in your post and I can say that Dr. Enlander tests for all these same things and a lot more.

 

[rlc]

Hi Nielk, sorry I don’t live in the US so my knowledge of the geography of NY isn’t too good.

The tests that Dr Mirza mentions in these articles are not the only tests he does just the ones that pick up the highest numbers of misdiagnosed patients, the main reason for his success is that he doesn’t use the out of date reference ranges for so many tests, that despite the fact it is completely illogical, all the labs of in the world keep using even though the reference ranges have been proven wrong by science, often decades ago, he talks a bit more about this here http://www.amazon.com/review/R28ZY8OYSWP0R So it’s not so much about what tests doctors do its about whether the correct reference ranges for all the tests are being used.

I can’t comment on whether any of these specialist CFS doctors are aware of these issues on reference ranges, all I can say is I have never seen any of them comment on this issue and I would have thought that if they were finding many misdiagnosed patients because of knowing about the wrong reference ranges they would have said something about it.

So we just don’t know if these CFS doctors know about all these wrong reference ranges, but it’s possible due to the fact they have never said anything about it that they are not. Unfortunately almost all doctors in the world are unaware of the problems with all these reference ranges.

The other factor to consider is cost I’m not aware of what the costs for all these CFS doctors are but I know a lot of CFS doctors are very expensive, maybe if there are patients of these doctors on the forum they could advise on this.

I don’t know what Dr Mirza charges, but I would imagine that because he isn’t a CFS specialist (who tend to be exceedingly expensive,) he just charges what a normal specialist would charge for a 75 minute appointment, a call to his office will find this out.

I know that there are quite a few patients who have or are being seen by the various CFS specialists such as Peterson, Klimas, and Hyde etc on this forum. I think it would be very helpful if some of the patients of these doctors set up a tread in this section were they listed all the tests with reference ranges that these various doctors do and what they charge and contact details, although I appreciate this would take a bit of work, It would make it very easy for the patients considering seeing them, a lot of whom are going to spend a lot of money and often travel vast distances to be able to compare them and see what they are going to be getting for their money.

All the best

 

[rlc]

Hi maryb, I too am concerned about your thyroid results, yes I did post a link to you in which Dr Mirza states that by his use of new reference ranges he would certainly not be saying that your Thyroid is healthy, and that it should be treated very differently. I must say that I feel very sorry for you UK patients, the reality is that unless you have private insurance the NHS is not testing any of you to make sure that all the other illnesses have been ruled out properly, in fact it is written into the NICE guidelines not to. I have seen many UK patients on this forum with test results that should have lead to further investigation to find the cause and the NHS is refusing to do it.

What I can say about Dr Mirza because I never take any doctor or specialists statements on face value, is that I have looked up what he is saying about the wrong reference ranges and sure enough the scientific papers to back up what he is saying are there, it is true what he is saying.

If you do decide on one last trip then I think it would be a good idea to see Dr Mirza first, he will be able to sort out your thyroid and test for any other problems you may have, if you are lucky he may find all the problems very quickly and you wouldn’t have to stay in the US to long, and I would imagine he is less expensive, I have read somewhere? That Dr Enlander charges $5000 for the first year and this doesn’t include any treatments, His treatment consists of injecting patients full of vitamins and minerals and certain supplements, using drugs to treat sleep, pain and depression and putting the patients on healthier diets. Which he explains here http://www.prohealth.com/library/showarticle.cfm?libid=12319 personally I wouldn’t pay that kind of money for that, when you can get most of these things cheaper elsewhere.

The Dr Mirza article I posted to you before is this one http://www.bmj.com/rapid-response/2011/11/02/unveiling-mysteries-thyroid in which he says that

" Recent studies have shown that the true biological normal range of TSH is 0.4– 2.5 mIU/L.

This means that the currently used reference range of TSH between 0.5-5 mU/L is skewed by including samples of the population by subjects with unidentified Hashimoto's thyroiditis, undetected goiter or subjects with a positive family history of Hashimoto's thyroiditis and hypothyroidism. If you remove these subjects from the samples from which the current reference range is derived, the true TSH range will be between 0.4- 2.5 mU/L"

From memory your TSH was 3.6? Well above the true biological normal reference range for TSH 0.4-2.5 mlU/L

He also says that

"In our experience, a levothyroxine dose of 12.5 mcg a day would reduce TSH by 2 digits. This simple math will allow you to have a rough estimate of levothyroxine dose. The goal is to reach a TSH of 1-1.5 mU/L."

If you could get a doctor to in the UK to treat your high TSH as Dr Mirza recommends and get your TSH down to between 1-1.5 then you may see big improvements and not need to travel, also read the two articles of his I posted to Lo above and make sure that everything else he mentions has been done, and if you have things that haven’t been done see, if you can get them done.

If that doesn’t work then you can see him in the states he tests for lots of other things as well like subtle Pituitary and Hormone problems and should be able to find the cause of your problems.

Like I say I’m well aware that the NHS is crap and you may not be able to get your doctor to do any of these things, in which case your only option will be to get on a plane. But the scientific evidence does say that the TSH reference range should be a lot lower than the one all the labs are using, and your TSH is above the new recommended levels, which shows that you very likely have a treatable thyroid problem it’s just a matter of getting to someone who will accept that the TSH range is wrong and treat it properly. Unfortunately you may have to go to the states to get this done, but there is hope that you have a treatable problem.

Hope this helps

All the best

 

[maryb]

ric thank you so much for taking the time to post your detailed reply, I honestly wish I could see Dr Mirza right now, but at the moment I'm not up to the travelling.
I will try to get to a endocrinologist here for the time being. This is the difficult bit as
my GP has said everything normal no need to see me again So definitely the expensive private route. I'll let you know how it goes.

 

[rlc]

Hi maryb, I to wish I could see Dr Mirza right now but it’s just not possible for travel and financial reasons, if you decide to go privately to an Endo I recommend that you first call the endo and see if they will tell you their views on the TSH reference range, if they think the upper limit is five then don’t bother with them and find a different one, unfortunately the medical community is still fighting over what the TSH reference range should be which is explained in this article http://jeffreydach.com/2011/08/31/the-tsh-reference-range-wars-by-jeffrey-dach-md.aspx

Hope you can find an endo that will help you soon

All the best

 

[loayachil]

I am going to go to Dr. Levine tomorow. From other sites she seems to be the one in this area who gives the most individual attention. I am going to ask for all tests, including the full Lyme and co-infection tests from Igenex and print out the symptoms list from this site as well as the post about tests.
I will let people know what tests she gave and how it went in case anyone else wants to follow. (or if I am not satisfied)
A special thanks to Mr. Chase Freedom for his generous loan for these tests and appointments

 

[Nielk]

I am going to go to Dr. Levine tomorow. From other sites she seems to be the one in this area who gives the most individual attention. I am going to ask for all tests, including the full Lyme and co-infection tests from Igenex and print out the symptoms list from this site as well as the post about tests.
I will let people know what tests she gave and how it went in case anyone else wants to follow. (or if I am not satisfied)
A special thanks to Mr. Chase Freedom for his generous loan for these tests and appointments

Hi Lo,

Good luck with your appointment. I am eagerly awaiting to hear how it went.

 

[mtnbibliophile]

I've never seen Enlander or Natelson. I have seen Levine. If I had a choice now (it's not a good time for me to switch), I would very definitely see one of the others.

 

[cph13]

Hi mtnbibliophile,
Dr.Natelson has not been avail. for the past 8 weeks. My Nov. appt got cancelled. I believe he is having surgery and won't be around til the end of the year (MAYBE). They still have not rescheduled my Nov. appt.
He has a VERY LIMITED appt. schedule. Originally, it was 2 days a week. Now I'm hearing only 1 day a week. He is VERY MUCH into RESEARCH. xo C

 

[vli]

I've never seen Enlander or Natelson. I have seen Levine. If I had a choice now (it's not a good time for me to switch), I would very definitely see one of the others.

to clarify: you mean your experience with levine was not good?

 

[mtnbibliophile]

to clarify: you mean your experience with levine was not good?

That's correct. I felt she did not pay adequate attention to me, including but not limited to telling me she had no time to discuss my test results with me.

 

[vli]

That's correct. I felt she did not pay adequate attention to me, including but not limited to telling me she had no time to discuss my test results with me.

ugh. typical and terrible.

 

[loayachil]

Good afternoon Vli and Nielk,
Sorry, I haven't been here for a while. After my initial visit with Dr. Levine, I decided to hold my reservations until my second visit. Overall I would recommend her, and here is why.

She came across as caring and knowledgeable, although you have to initiate the discussion. My first visit I gave her my medical records and expected her to start asking me questions, which she did not. When I came in the middle to pick up some blood work she just gave them to me. The second visit I started asked her about various tests and procedures, and she discussed them with me. As long as I was the one asking she seemed to give me as much time as I needed. She discussed protocols that she felt strongly on, and was willing to listen and even help me try out if I wanted (at a later date) protocols that she was not in favor of.

When I went the first time, I went with a bunch of labs (hundreds of pages), which she flipped through and actually surprised me when I mentioned one and she told me she noticed that. She also surprised me when I mentioned one of my symptoms and she told me of another NYC doctor that had a specific approach to that (most cfs doctors dont mention the others, as their way is the most absolute). She did a poor man's tilt table test and wrote me scripts for a Tilt Test and a spect scan, and took some blood work, mostly for various viral titters.

It bothered me that the visit was short, and I ended up still having a major pain getting the tests which took months.

She comes down more as a human than a doctor which is a double edge. If you want someone who seems caring and will listen to you and answer the questions you ask (only if you ask) then that is a plus. If you want someone who will come in confident, and start off telling you that this and that is what is broken and you need to fix, then she isn't the doctor for you.

As I mentioned, the second visit was longer as I discussed various options with her. I'll get more into it in another post, but one nice thing is that she started me with a specific antibacterial and then an antiviral, and told me to try the first, and then the second, and to email her to save me an appointment.

I've noticed based on my own trials as well as those mentioned here, that there is an inverse correlation between the amount that the doctor charges and the amount they actually help. The average "expert"'s initial 2 visits when you add all the expenses together are $1500, and I think her charging less is because she isn't taking as much advantage as others are.

Good luck all,
Lo

 

[mtnbibliophile]

Please be careful about the antiviral. She put me on Valcyte several years ago, which at least sometimes is not effective if the patient has more than one underlying virus, such as EBV plus HHV-6. Yeah, it cut down my HHV-6 but sent my EBV through the roof, and I have never gotten back to the level of health before I took the Valcyte. I see that she picked up something in your report as she quickly flipped through it, but didn't mention it to you until you asked about it specifically. That has been a problem for me; a few times; test results showed an abnormality that she never mentioned to me, and frankly, if I'm having an exacerbation, I don't look at my test results thoroughly. That's what I'm paying her to do.

 

[vli]

can anyone help me and mtnbibliophile understand how her ebv cld've gone thru the roof with Val?? Thanx

 

[mtnbibliophile]

Oh, I understand the reason now. I should have been taking Valtrex for my EBV as well as the Valcyte for my HHV-6. Suppressing only the one allowed the other to flourish.