Looking for a good CFS doc in New Jersey/New York City

[Scotty81]

Hi,

My 18 year old was diagnosed with CFS a few months ago. We are trying a few things through our local doctor, but I wanted to get a more expert opinion from a doc that sees CFS patients as their focus. It's not that I don't believe the diagnosis. I definitely do. But, I would like to hear from more of an expert on what more we can try vs. things we should avoid. There are so many treatment potential options, and I am looking to wade through them to determine what might be more applicable for our particular case.

I have heard of Dr. Benjamin Natelson and am considering going to see him. Has anyone done so, and does anyone have any experience to share?

Alternately, are there any other docs in NYC or NJ that might be suitable? My 18 year old's chief symptoms are being very fatigued, getting unrefreshed sleep and brain fog.

Thanks in advance for any advice you may have.

Scotty81

 

[ukxmrv]

Scotty81,

I have seen Dr Enlander and he's both a great doctor and a lovely man.

http://www.enlander.com/

 

[BEG]

Thanks, ukxmrv. Always good to know these things.

 

[Nielk]

I second the motion with Dr. Derek Enlander.

 

[medfeb]

Scotty81

Dr Erlander held a conference in November on his ME/CFS program at Mt. Sinai which I thought was very good. A summary of the conference and videos of the speakers are posted on the CFS Patient Advocate blog if you are interested.

http://cfspatientadvocate.blogspot.com/2011/12/mt-sinai-mecfs-conference-dr-enlander.html
http://cfspatientadvocate.blogspot.com/2011/11/mt-sinai-mecfs-conference-de-meirleir.html
http://cfspatientadvocate.blogspot.com/2011/11/mt-sinai-mecfs-conference-dr-eric.html

Dr Susan Levine is also in New York City. Dr. Levine is a member of the CFS advisory council (CFSAC)

 

[heapsreal]

You might find the cfs ROAD MAP helpful and something your local doctor can work through with you.
https://docs.google.com/document/pub?id=1QEmWar_CwKfWaHhpzamSWgEAjd2S44CTUTiJk9QIeY0

cheers!!!

 

[vli]

medfeb are you an Enlander patient?

Scotty my main symptoms are the same as your son's/daughter's except I have migraines as well. I am going to see Dr Enlander in NYC around middle of January for the first time. I'm coming all the way from Hong kong so it's no small matter for me (I've been sick for 11 years).

I think if you're looking at NYC there's no "more famous" doctor or doctor more familiar with CFS than Enlander (correct me people if I'm wrong).

 

[Scotty81]

Thank you to all the above who have replied to my question about a good CFS doc in the NYC area. I was especially impressed with the Google doc that heapsreal posted. I have been trying to read about all the possible tests that one should do to rule out other illnesses or abnormalities. This list was the most comprehensive (and orderly!) list I have come across.

Regarding Dr. Enlander, I have seen other people that have recommended him as well. It did look like he was heavily promoting IV or IM injections though. And, although I wouldn't rule this form of treatment out, I was also looking for a doctor that would be able to recommend traditional as well as some complementary medicine techniques. From reading Dr. Natelson's book (Your Symptoms Are Real...), it looks like he would be open to that sort of thing.

vli,

Good luck with your appointment with Dr. Enlander. I hope he is able to help you. Please post a reply as to your experience.

Thanks,
Scotty81

 

[Nielk]

Thank you to all the above who have replied to my question about a good CFS doc in the NYC area. I was especially impressed with the Google doc that heapsreal posted. I have been trying to read about all the possible tests that one should do to rule out other illnesses or abnormalities. This list was the most comprehensive (and orderly!) list I have come across.

Regarding Dr. Enlander, I have seen other people that have recommended him as well. It did look like he was heavily promoting IV or IM injections though. And, although I wouldn't rule this form of treatment out, I was also looking for a doctor that would be able to recommend traditional as well as some complementary medicine techniques. From reading Dr. Natelson's book (Your Symptoms Are Real...), it looks like he would be open to that sort of thing.

vli,

Good luck with your appointment with Dr. Enlander. I hope he is able to help you. Please post a reply as to your experience.

Thanks,
Scotty81

Hi Scotty,

I am a patient of Dr. Enlander's. He does use supplements a lot. His weekly kutapressin shots contain Magnesium Sulphate
Folic Acid
B12
Calphosan
Glutathione
Trace elements
He also recommends:

IMMUNOPROPl and its substitutes ( Immunocal) is an amino acid food additive, it is an oral capsule taken twice daily. It contains glutathione , l-cystine, picamilon and trace Selenium. It is thought to be involved in the immune system and may diminish fatigue and "brain fog", and assist in concentration and short term memory.

and

IMMUNOPlus Immunoplus is a supplement to Immunoprop in that it contains Follinic acid, folic acid, methyl B12, TMG and other components in the methylation cycle. Dr Enlander believes that the methylation cycle is part of the CFS/ ME dysfunction


These are all supplements. He also recommends accupuncture and Chinese herbal medicine.

 

[vli]

vli,

Good luck with your appointment with Dr. Enlander. I hope he is able to help you. Please post a reply as to your experience.

Thanks,
Scotty81

Scotty,

I have to be honest here. The reason I'm going to see Enlander is because he gives Ampligen which I consulted him about back in August when he went to London and gave a talk. I would not move all the way to the States otherwise... that is a drug and not "complementary medicine" I would argue. Also I don't think any use of IV/IM injections is a particular indication of whether a doc's "complementary". You can have IV antivirals and that's not complementary. B12 shots are not "complementary" medicine! I'll write you about my patient experience when I get there.

vli

 

[Sushi]

Regarding Dr. Enlander, I have seen other people that have recommended him as well. It did look like he was heavily promoting IV or IM injections though. And, although I wouldn't rule this form of treatment out, I was also looking for a doctor that would be able to recommend traditional as well as some complementary medicine techniques. From reading Dr. Natelson's book (Your Symptoms Are Real...), it looks like he would be open to that sort of thing.

Thanks,
Scotty81

Scotty,

How one defines complementary or "traditional" medical techniques in regard to ME/CFS is not at all clear. First there are no traditional of complementary protocols that have worked for everyone because we all present with a very different set of symptoms or pathogens.

I think what most of us are looking for is a doctor who knows what tests to give to discover abnormalities (in whatever system) and has experience in working out a protocol (traditional or complementary, but usually a mix) that best addresses the pathogens and abnormalities in each individual patient. So far, it seems that a mixed protocol that both supports the body and goes after pathogens is giving the best results.

It would depend very much on who you asked how this type of protocol is defined. But certainly Enlander has experience with a wide range of approaches and is a good bet in the NYC area.

Best wishes,
Sushi

 

[rlc]

Hi Scotty81, theres a endocrinologist in Auburn New York called Doctor Shirwan A Mirza, who has found by being up to date on modern research and properly investigating his patients, that up to 90% of them hes seen diagnosed with CFS are misdiagnosed, and he has been able to find and treat what is real wrong with them.

He has written a couple of articles that explain his methods and the faults in the guidelines to rule out other diseases in the CDC criteria for CFS, they are The myth of chronic fatigue syndrome, which can be found at the bottom of this page http://www.bmj.com/content/334/7605/1221?tab=responses

And NICE and CDC miss the boat which can be found on this page http://www.bmj.com/content/335/7617/446?page=2&tab=responses

Have a read and if you havent been investigated as extensively by your doctor as Dr Mirza recommends it might be well worth your while going to see him.

His contact details are on this site http://www.insiderpages.com/doctors/Shirwan-A-Mirza-MD-Auburn

All the best

 

[rk1966]

Dr. Natelson

I too am considering Dr. Natelson. I saw him speak at the NJ CFS conference in October of this year.

I'm am basing most of my reasoning for choosing him on the fact that he does a lot of research on CFS and his patient intake form is very thorough. He also suggests labwork to have your primary care physician order before you even have your first appointment with him. I like that he gathers this background information BEFORE he ever sees the patient. I also appreciate that his initial consult is 90 minutes; it's very rare to see an MD spend that amount of time with a patient (yes, you have to pay for his time, but still, most aren't willing to give you their time, even when you or your insurance company is paying for it).

I believe he only accepts medicare, but I'm lucky enough that my husband's insurance will reimburse us out-of-network.

Unless I see clear evidence that he's not as good as I think, I'm going to pursue an appointment with him.

I pray that your son gets the correct diagnosis and is treated by the right doc.

I'd love to know how your appointment with Dr. Natelson goes.

 

[justinreilly]

I started seeing Dr. Enlander a few weeks ago. I am happy so far, but it hasn't been long. From what I can gather, he seems to be the most well-regarded of the 'big three' in the NY area (Levine, Natelson and Enlander). I like that he offers a range of the cutting edge and effective tx- Ampligen, GcMAF, kutapressin, methylation supplements, and I have heard he want to do a Rituxin trial. I have read some things by Natelson that I really disagreed with (don't remember exactly, but I think it was something about ME not being an immune disease, but don't quote me!). Good luck!

 

[justine]

Hi all -

I know this is a little bit of an older thread but I am also in the New York area and was looking for a new doctor. I was wondering if anyone has any more opinions on Dr.'s Enlander and Natelson now that a little time has passed?

Also, that CFS roadmap from heapsreal is amazing - thank you for posting that! - and rlc, Dr. Mirza sounds like a really good alternative to a CFS doc (that may take my insurance more easily). Have you ever seen him?

I hope everyone is doing well and thank you very much in advance for any insight anyone may have-
Justine

 

[rlc]

Hi Justine, sorry I haven’t seen Dr Mirza because I live in New Zealand, but if I could he is certainly a doctor that I would want to see. Because the symptoms of ME overlap with so many different conditions, the most important thing is to make sure that the diagnosis you have is actually the right one! Because it has been found that doctors very frequently wrongly diagnose people with ME when they actually have other known and often treatable conditions.
Dr Mirza is a very up to date doctor who is aware of things like wrong reference ranges for certain conditions, like thyroid and B12 etc, are leading to people being misdiagnosed as having ME, he is the only doctor I have ever heard of that is aware of these facts, I have never seen any of the CFS specialists mention it. I’m not certain of all the ins and outs of the US insurance system, but I can see no reason why going to see him wouldn’t be covered by insurance, it is no different than being referred to any other specialist, so you should be able to get him to rule out all other conditions and have it covered by insurance.
Personally if I was you, I would start with Dr Mirza because it should be covered by insurance and because he finds that most cases of CFS that he sees are wrongly diagnosed and actually have other illnesses he will do everything he can to find the right diagnosis for you. If he does find an alternative diagnosis for you then he will treat it and you will be fine and it will be covered by insurance. And it will save you having to pay to see a CFS specialist.
Amongst the specialist ME doctors there is a great difference in the amount of attention they pay to and testing they do to ruling out other diseases and the misdiagnosis rate that they find! Dr Hyde finds that about 80% of his patients have other missed illnesses and has even written a book about it and some other CFS doctors never even mention finding any missed illnesses, which makes me wonder how extensively they are looking, I’m not aware of the New York based CFS specialist ever saying anything about high misdiagnosis rates.
If after seeing doctor Mirza it turns out that you do have ME then you could try one of the CFS specialists and see if any of their treatments help you, there are people here who have seen these doctors and can give you information on them.
All the best

 

[justine]

Hi rlc-

Thank you so much for responding! I have been searching like crazy for info on Dr. Mirza but haven't been able to find much. I would be so interested in hearing how you know so much about him and where I can read more about him. Have you been given a diagnosis that you were able to get help with? I hope so. It's nice to hear of people feeling better!

I have been going to a non-CFS doctor for the past few years to see if anything else could be found but no luck, which is why I was thinking about going to Dr. Enlander. When I called and spoke to their office for information, they said there would be quite a bit of testing to make sure nothing has been missed - which is just what I need and what I am really looking for. Someone that will test the heck out of me and maybe see some patterns in my "normal" labs that maybe show some abnormalities that can be worked on...which, sounds like Dr. Mirza, too. I have a few strategies mapped out, just have to pick one! Hardest part.

I liked what you had to say so much that I looked into your other posts on different threads(hope that's not weird? my social skills have taken a beating over these last years in isolation and I have no idea what's normal anymore! lol) and I really like where you're coming from. I thought you had great posts in some really great threads. I have read about Byron Hyde many times before and until then, had thought I had a gradual onset-type of CFS because I did not have any sort of a flu before hand and had struggled with hypoglycemic-type symptoms with no positive test. I now wonder because I had experienced episodes of vertigo shortly before hitting the wall and was never the same again. It was kind of like now you see it (life, normalcy) and now you don't. Poof. Gone. So strange. I was standing in line with a friend from work at lunch when a wave went over me, very distinctly from head to toe and back up again - it was as if I was unplugged. Totally fine one minute, all gone the next. I've never been able to find anyone else who had that same experience and so far no doctor has heard of it either.

I'm just trying to gather as much information as possible right now and have been spending as much time as possible with my laptop reading through posts. I had been doing pretty well this past year but took some astaxanthin a few weeks ago and within twenty minutes or so completely reverted to where I was a year ago. I have no idea why it affected me so terribly (although someone said it might be a liver thing) and it's a little creepy when each day is as bad as the last and all of a sudden three weeks go by when things had just previously looked a little promising. I'm just trying to not let three weeks turn into months and then it's easily another year. Need to get some blood work done. So sorry for babbling! This is much too long, I am sure. Hope you have a good day in beautiful New Zealand

Thanks again-
Justine

 

[rlc]

Hi Justine, don’t worry nothing weird about reading back through my posts, glad it’s been helpful. I came across Dr Mirza by accident when I stumbled across his article The Myth of Chronic Fatigue Syndrome http://www.bmj.com/rapid-response/2011/11/01/myth-chronic-fatgue-syndrome I found what he was saying about CFS not being real, fitted in with what I had read about how the CDC had invented CFS out of thin air, deliberately ignoring all previous research on ME and findings such as failed MRIs in ME patients, and with what Dr Hyde says that CFS isn’t ME and isn’t a real illness it is a vast collection of misdiagnosed patients, who really have other known diseases. I looked into what Dr Mirza was saying about how the reference ranges for so many conditions are wrong, leading to so many people getting missed diagnosed with CFS, and sure enough the research say’s he is right, but nobody has changed the reference ranges! So people keep getting misdiagnosed.
These are other articles that I have found by him where he shows himself to have a very impressive knowledge of different conditions and is often telling other doctors that they have got it totally wrong and are completely out of date.
NICE and CDC Miss the boat http://www.bmj.com/rapid-response/2011/11/01/chronic-fatigue-syndrome-nice-and-cdc-miss-boat
A judicious Evaluation of unexplained symptoms http://www.bmj.com/rapid-response/2011/11/02/judicious-evaluation-unexplained-symptoms
Coeliac Disease: The great imitator http://www.bmj.com/rapid-response/2011/11/02/celiac-disease-great-imitator
Coeliac Disease The great imitator http://www.bmj.com/rapid-response/2011/11/01/celiac-disease-great-imitator
Vitamin D deficiency http://www.bmj.com/rapid-response/2011/11/02/vitamin-d-deficiency
Unveiling the mysteries of the Thyroid http://www.bmj.com/rapid-response/2011/11/02/unveiling-mysteries-thyroid
Diagnostic and prognostic utility of Autoantibodies in Thyrotoxicosis http://www.bmj.com/rapid-response/2011/10/31/diagnostic-and-prognostic-utilty-autoantibodies-thyrotoxicosis
Postpartum period: When the thyroid might bring the blues http://www.bmj.com/rapid-response/2011/11/02/postpartum-period-when-thyroid-might-bring-blues
Evaluation of Milk Alkali Syndrome http://www.bmj.com/rapid-response/2011/11/01/evaluation-milk-alkali-syndrome
Don’t take away my parachute http://www.bmj.com/rapid-response/2011/11/01/dont-take-my-parachute-away
eGFR: MDRD Formula has its limitations http://www.bmj.com/rapid-response/2011/11/01/egfr-mdrd-formula-has-its-limitations
Corticosteroids cause hypokalemia, not hyperkalemia http://www.bmj.com/rapid-response/2011/11/01/corticosteroids-cause-hypokalemia-not-hyperkalemia
Unexplained infertility: Think of Undiagnosed Celiac disease http://www.bmj.com/rapid-response/2011/11/01/unexplained-infertility-think-undiagnosed-celiac-disease
As far as I know I have ME, I had the acute infectious type onset and fit all the criteria for it, but I still have doubts that something else has been missed, unfortunately the NZ medical system isn’t very good and it is very hard to get everything tested. However just by reading Dr Mirza articles it lead me to finding that I also had Vitamin D deficiency, which getting treated has helped me immensely and that I’m a carrier for the genetic disease Hemochromatosis, all of which twenty other doctors including several that claimed to be experts in CFS had missed. If I was able to I would certainly be going to see Dr Mirza to see if he could find anything else.
It can be hard to tell, but what you’re describing doesn’t sound like the normal onset of ME where patients have a sudden infectious type illness that then leads to ME. Lots of other diseases can have sudden starts so unfortunately it’s not easy to know what your onset symptoms mean.
One of the problems with people getting diagnosed with CFS without having all other illnesses ruled out first, is that people then tend to try lots of different kinds of supplements, under the assumption that this is safe, however some of these supplements can react very badly in patients with certain diseases and if the patient has one of these diseases and they haven’t been diagnosed it can make the patient a lot worse, Astaxanthin is one of these supplements, The contraindication for Astaxanthin are listed here http://www.complete-pharma.com/warnings_astaxanthin.html There a whole lot of medications that it says you should not take Astaxanthin with, so see if you are taking any of these, it also says that it should not be taken by patients who are hypertensive, have osteoporosis, Parathyroid disorders, hormone sensitive conditions and immune disorders. Although taking it has been a very unpleasant experience for you, it may provide a vital clue to finding out what is wrong with you, Parathyroid disorders often get misdiagnosed as CFS as do a lot of Hormone sensitive conditions, Dr Mirza is an endocrinologist so he would be a good person to see to investigate these.
I don’t know if it make any difference regarding insurance where you see doctors in the states, but Dr Mirza is also an Assistant Professor of Internal Medicine at Auburn Memorial Hospital http://www.auburnhospital.org/
I would imagine that Dr Enlander has very long waiting lists so maybe you could put yourself on the waiting list, and go and see Dr Mirza while you’re waiting, if he finds the cause then you can cancel the appointment with Dr Enlander if not you can then go and see him as well.
Whichever way you decide to proceed, how much you prepare before going to see a doctor can make a big difference to the outcome of the appointment, on this page and the links at the bottom of it, it explains a whole lot of things you can do that will increase your chances of success http://www.rightdiagnosis.com/diagnosis/steps-doctors-visit.htm
Hope this helps
All the best

 

[justine]

Wow, rlc...thank you so much for all this great information!! I can't tell you how much I appreciate it. This had to have taken you a bit of time to put together - thank you, thank you, thank you! I sincerely hope you are able to find a doctor someday that can put your own wondering to rest. It is no fun being so sick and it is no fun knowing that there are so many other people in the same boat.

Best regards,
Justine

 

[rlc]

Hi Justine, glad to help, lets us know how you get on. Hopefully you will get some good help soon!!!!
All the best