diagnosed by exclusion at beth israel/boston, scared with no direction..what now?

[Goimurph]

I have been through the ringer. my health has been spiraling downward for the past 3 years. There was a period of a few months when things started to even out and even improve slightly. I actually went to Target. Now since this summer, I'm on a steady decline. Been through all the tests, tons of specialists at BIDMC in boston. Finally, I am diagnosed with CFS by exclusion. Ok,now what?

How do I know this is real? I fit every symptom. But I have on a lot of everything else, that turned out to be negative.

All my doctor said was try to get in with Felsenstein at MGH or go to Mayo Clinic. other than that, get a massage or acupuncture?? I'm still waiting on Felsenstein to review my records. From what I have read here, it can take a while for an appointment. I fear I don't have a while. My "good" days are being devoured by my bad ones. Today I can speak a little stronger than yesterday, but I can't move off the couch without assistance.

I need someone to help me understand what and why this has happened to me. I need someone to help me stop this from getting any worse, before I loose anymore of myself. I am so scared that there is a point of no return and that I am knocking on its door.

should I seek another ID dr while waiting for Felsenstein? I have looked at the dr. databases, and researched the doctors there. They seem to get trashed in the patient reviews online. I am tired of seeing drs that make me feel like I am wasting their time. I have lost faith in the medical profession b/c they make me feel worthless. That I should just stay home and suffer in silence.

Can someone direct me?

 

[minkeygirl]

First I would stop freaking and start googling for integrative doctors or naturopaths. Put in your city and cfs or ME or methylation. Anything. The more I feel in control the less freaked I get.

What I can tell you is don't go to the Mayo Clinic. They are sadly from what people say, clueless about ME/ Cfs.

Check out co-cure good doc list and there is a thread here with doctors.

Infectious disease docs may or may not be the way to go depending on how knowledgeable they are

Sorry if this isn't coherent. Bad day. No one can tell you why. Just move forward. At least you have a dx no matter
How much it sucks.

 

[SOC]

I suggest you look into seeing one of the top ME/CFS specialists, even if you have to travel. All the others will waste years of your life.

There is thinking that aggressive treatment within the first 5 years is the best chance for a large improvement or remission. If I had it to do over, I wouldn't waste that opportunity by not seeing the top docs.

ETA: My opinion is that Mayo would be a very bad choice for ME treatment.

Read here at PR about Klimas and her associates, Kogelnik, Enlander, Chia, Petersen ... I'm sure others here can make a few more suggestions ... And try to get in with one who seems to suit you.

 

[*GG*]

I saw Dr. Felsenstein, 33 vials of blood and not much to offer me. FYI

GG

 

[minkeygirl]

SOC is right but many of these people have long waiting lists.

Get on a list and if you cant get in to see someone soon t hen find someone local who can get you started.

Gail Kansky is in Boston. Maybe she knows someone.

 

[Hip]

There are a lot of supplements and drugs that you can take that may help arrest the downward spiral, stabilize your condition, and even make improvements. You can find these supplements detailed in depth on this forum, and the following lists of ME/CFS supplements are useful:

ME/CFS SUPPLEMENTS AND DRUGS

ME/CFS medication medicine
Chronic Fatigue / Fibromyalgia Syndrome - Symptoms, Diagnosis, Treatment and Information
Lassesen.com
Treatment for Chronic Fatigue Syndrome
Anecdotal evidence of different CFS/ME treatments
Chronic Fatigue Syndrome
ME Treatments
Pharmacotherapy for CFS


In terms of finding a proper ME/CFS, doctor, see the following list of world-class doctor/researchers of ME/CFS:

ME/CFS DOCTORS AND CLINICS - USA

Dr John Chia (Torrance, California) Article on Dr Chia
Dr Chia is an infectious disease specialist with special interest in enteroviruses (which include coxsackievirus B and echoviruses), and is the leading researcher in enterovirus-associated ME/CFS. He uses the immunomodulator oxymatrine to treat ME/CFS patients.

Dr A Martin Lerner (Oakland, Michigan) Article on Dr Lerner
Dr Lerner is a leading researcher in ME/CFS associated with herpesvirus and uses antivirals (Valtrex and Valcyte) to treat these infections. He also has particular interest in the cardiac problems and cardiac insufficiency often found in ME/CFS.

Dr Jose Montoya (Stanford University, California) Article of Dr Montoya
Dr Montoya is a leading researcher in ME/CFS associated with herpesvirus such as HHV-6, EBV, cytomegalovirus, and uses the powerful antiviral drug Valcyte to treat these herpesviruses where appropriate.

Dr Daniel Peterson (Sierra Internal Medicine, Nevada) Article on Dr Peterson
Dr Peterson is a very experienced ME/CFS doctor and researcher, and has a special interest in natural killer cell functioning in ME/CFS. Dr. Peterson uses the antiviral Vistide (cidofovir) in patients with HHV6 and cytomegalovirus infections.

Dr Paul Cheney (Asheville, North Carolina) Article on Dr Cheney
Dr Cheney is an innovative doctor and researcher using leading edge medicine to treat ME/CFS.

Dr Nancy Klimas (Miami, Florida) Article on Dr Klimas
Dr Klimas is a ME/CFS doctor and researcher who runs a ME/CFS clinic. She has significant experience in using immune modulators for treating ME/CFS.

Dr Charles W. Lapp (Charlotte, North Carolina) Article on Dr Lapp
Dr Lapp runs clinical trials for drugs for ME/CFS and fibromyalgia, and has been using the immunomodulator drug Ampligen for ME/CFS.

Dr Derek Enlander (New York)
Dr Derek Enlander uses immune modulators for treating ME/CFS, and the antiviral drug Valcyte.

Dr Garth Nicolson (Huntington Beach, California)
Dr Nicolson works with ME/CFS, autoimmune diseases, Gulf War illness, and the infectious causes of autism and neurodegenerative diseases.

Dr Daniel Dantini (Ormond Beach, Florida) Article on Dr Dantini
Dr Dantini uses the antiviral drugs Valtrex (valacyclovir) and Famvir (famciclovir) for herpesviruses in his treatment of ME/CFS where appropriate.

Dr Andreas M. Kogelnik (Mountain View, California)
Dr Andreas M. Kogelnik is an infectious disease doctor, and an ME/CFS specialist and researcher.


ME/CFS DOCTORS AND CLINICS - UK / EUROPE

Dr Sarah Myhill (Powys, Wales, UK)
Dr Myhill is GP with significant experience of CFS, and has a website from which various lab tests can be ordered and interpreted by Dr Myhill.

Breakspear Medical Group (Hertfordshire, UK)
Breakspear focuses on allergy and environmental illness. For ME/CFS treatment they use antivirals, gammaglobulins for parvovirus, and test and treat rickettsial and bacterial co-infections.

Dr Kenny De Meirleir / Red Labs (Belgium)
Dr Kenny De Meirleir is a leading ME/CFS doctor and researcher who runs a ME/CFS clinic in Brussels. Dr De Meirleir has a particular interest in the intestinal dysfunction and intestinal dysbiosis of ME/CFS.

 

[Goimurph]

First I would stop freaking and start googling for integrative doctors or naturopaths. Put in your city and cfs or ME or methylation. Anything. The more I feel in control the less freaked I get.

What I can tell you is don't go to the Mayo Clinic. They are sadly from what people say, clueless about ME/ Cfs.

Check out co-cure good doc list and there is a thread here with doctors.

Infectious disease docs may or may not be the way to go depending on how knowledgeable they are

Sorry if this isn't coherent. Bad day. No one can tell you why. Just move forward. At least you have a dx no matter
How much it sucks.

Thanks for the reality check. I feel like my world is spinning out of control. I will take control of this though. Thank you. I did look into the Mayo, and from everything I have heard, I was very suspicious. I don't need another doctor to make me feel like I'm depressed or psychosomatic half a country away.

 

[Goimurph]

I suggest you look into seeing one of the top ME/CFS specialists, even if you have to travel. All the others will waste years of your life.

There is thinking that aggressive treatment within the first 5 years is the best chance for a large improvement or remission. If I had it to do over, I wouldn't waste that opportunity by not seeing the top docs.

ETA: My opinion is that Mayo would be a very bad choice for ME treatment.

Read here at PR about Klimas and her associates, Kogelnik, Enlander, Chia, Petersen ... I'm sure others here can make a few more suggestions ... And try to get in with one who seems to suit you.

I had looked into Enlander I think that I will give his office a call. I know that all of these appointments will take time. I just need to find someone local to start me off on the the right path while waiting for more direction.

 

[SOC]

I had looked into Enlander I think that I will give his office a call. I know that all of these appointments will take time. I just need to find someone local to start me off on the the right path while waiting for more direction.

Virtually no local docs can start you off on the right path. Most know next to nothing about the illness and what they do "know" is very wrong. The most common belief is that me/CFS is a psychiatric disorder. The next most common is that there is no treatment except antidepressants.

 

[*GG*]

Virtually no local docs can start you off on the right path. Most know next to nothing about the illness and what they do "know" is very wrong. The most common belief is that me/CFS is a psychiatric disorder. The next most common is that there is no treatment except antidepressants.

Like you say "virtually no local docs can start you off on the right path." But I gave her my Drs info, he's not a big name, but he has helped me a lot! Kept me working for years that I doubt I otherwise could have made it through! The problem with my Dr is that he takes very little for insurance, he took mine, because I upgraded mine at work, once I realized that I was going to be dealing with issues for years! And I had started off with an HMO, which was very frustrating, because by the time I got into the Drs office, my referral had expired, just didn't need that to deal with on top of everything else!

My Dr has "parkinsons" shakes brought on by mold exposure, so he knows how to think outside the box!

GG

 

[JT1024]

Finally, I am diagnosed with CFS by exclusion. Ok,now what?

MY RESPONSES WILL BE IN CAPS ONLY TO DISTINGUISH FROM YOUR QUESTIONS!

#1.. LEARN EVERYTHING YOU CAN ABOUT YOUR OWN HEALTH.
#2... GET COPIES OF ALL YOUR HEALTH RECORDS.
#3 LEARN AS MUCH AS YOU CAN ABOUT EVERY TEST YOU'VE HAD SO FAR
#4 JOIN MORE THAN ONE ONLINE PATIENT COMMUNITY - THEY ARE NOT ALL THE SAME. SOME ARE MORE SCIENTIFIC THAN OTHERS. SOME ARE MORE SUPPORT GROUPS. YOU CAN LEARN SOMETHING FROM MOST OF THEM.

How do I know this is real? I fit every symptom. But I have on a lot of everything else, that turned out to be negative.

#5 DOCTORS DO NOT KNOW EVERYTHING. UNFORTUNATELY, MANY PEOPLE ARE BEING DIAGNOSED WITH "NEURO-IMMUNE" ILLNESSES AND THERE IS A LOT OF OVERLAP. YOU MAY HAVE CFS OR YOU MAY HAVE LYME, MS, OR SOMETHING ELSE.

All my doctor said was try to get in with Felsenstein at MGH or go to Mayo Clinic. other than that, get a massage or acupuncture?? I'm still waiting on Felsenstein to review my records. From what I have read here, it can take a while for an appointment. I fear I don't have a while.

#6 I HAVE AN APPOINTMENT WITH DR. FELSENSTEIN BUT IT IS MANY MANY MONTHS AWAY. IT DOES TAKE TIME TO GET AN APPOINTMENT. ONE GOOD THING.. SHE IS AWARE OF THE LIMITATIONS OF LYME TESTING AND LYME CO-INFECTIONS. SHE HAS TREATED ONE YOUNG DOCTOR AT MASSACHUSETTS GENERAL WHO HAD NEURO-LYME. DR. FELSENSTEIN WORKED WITH OTHER LYME LITERATE DOCTORS. THIS IS A POSSIBLY A TURNING POINT FOR MGH. HOWEVER, DR. FELSENSTEIN IS SOMEHOW CONNECTED TO THE CHRONIC FATIGE INITIATIVE RESEARCH IN NEW YORK (WITH DR. LIPKIN). SOME PEOPLE ARE LEARY OF WHO IS WORKING WITH DR. LIPKIN. BOSTON DOCS HAVE HISTORICALLY BEEN HORRIFIC FOR PATIENTS WITH ME/CFS OR FIBRO. ALL OF A SUDDEN ,THEY SEEM TO BE JUMPING ON BOARD. PERHAPS IT IS MEDICAL COMPETITION SINCE STANFORD'S JOSE MONTOYA IS WORKING WITH LIPKIN ALSO.

I need someone to help me understand what and why this has happened to me. I need someone to help me stop this from getting any worse, before I loose anymore of myself. I am so scared that there is a point of no return and that I am knocking on its door.

#7 I USED A FUNCTIONAL MEDICAL PHYSICIAN TO OBTAIN TREATMENTS AND TESTING THAT MOST DOCS ARE NOT AWARE OF. IN THE BOSTON AREA, THERE ARE NUMBER OF FUNCTIONAL MEDICINE DOCS. IT SEEMS MANY OF THE BEST DOCS ARE OPTING OUT OF INSURANCE. I HAD AN APPOINTMENT WITH A LYME LITERATE MD IN BOSTON BUT MY BROTHER WAS VERY ILL AND DIED UNEXPECTEDLY. I CANCELLED THE APPOINTMENT. HOWEVER, I LEARNED OF A FEW DOCTORS TO CONSIDER AFTER ATTENTING A LYME SYMPOSIUM AT MGH IN NOVEMBER. IF YOU DO NOT HAVE TO RELY ON INSURANCE, YOU CAN GET APPOINTMENTS VERY QUICKLY. CHECK OUT DR. ALEX BINGHAM, DR. KATHERINE LANTSMAN, TO START.

should I seek another ID dr while waiting for Felsenstein? I have looked at the dr. databases, and researched the doctors there. They seem to get trashed in the patient reviews online. I am tired of seeing drs that make me feel like I am wasting their time. I have lost faith in the medical profession b/c they make me feel worthless. That I should just stay home and suffer in silence.

#8.. I AM RIGHT THERE WITH YOU. I LOST CONFIDENCE IN MOST DOCTORS MANY YEARS AGO AND I WORK IN A HOSPITAL 40+ HOURS A WEEK. UNFORTUNATELY, MY HEALTH GOT MUCH WORSE AND I'VE HAD TO START OVER WITH NEW PHYSICIANS. I HAVE LITTLE PATIENCE SINCE I'VE BEEN ILL FOR A LONG TIME AND I AM DONE WITH ANY PHYSICIAN ARROGANCE OR PATRONIZING BEHAVIOR. I WEN'T TO A FUNCTIONAL MEDICINE DOC TO OBTAIN A PRESCRIPTION FOR LOW DOSE NALTREXONE. AFTER LEARNING VIA PATIENT FORUMS THAT MANY FIBROMYALGIA/ME/CFS PATIENTS ALSO TEST POSITIVE FOR LYME, I HAD LYME TESTING PERFORMED. I WAS SHOCKED TO LEARN I WAS POSITIVE FOR LYME, BABESIA, AND ANAPLASMOSIS. MY IMMUNE SYSTEM WAS ALSO NOT WORKING WELL. PRESENTING THE TEST RESULTS TO MY PRIMARY CARE DOC SHOCKED BOTH HIM AND HIS NURSE.

Can someone direct me?

#9 SINCE YOU'RE AT THE BEGINNING OF YOUR QUEST, PERHAPS YOU SHOULD APPLY FOR FMLA IF YOU ARE WORKING. I HAVE BEEN WORKING BUT HAVE DECLINED SUBSTANTIALLY. LIKE YOU, I NEVER KNOW IF I WILL WAKE UP IN THE MORNING OR COLLAPSE AT ANY TIME. BEING PREPARED WITH SHORT/LONG TERM DISABILITY AND FLMA DOCUMENTATION IS EXTREMELY IMPORTANT. I'VE NOT BEEN GOOD AT TAKING CARE OF MYSELF.

GOOD LUCK WITH HOW YOU PROCEED. PERSONALLY, IF I COULD AFFORD IT (AND I MAY STILL MOVE FORWARD), I WOULD CONSIDER DR. KATHERINE LANTSMAN. SHE HAS THE AVAILABILITY FOR FASTER APPOINTMENTS BUT INSURANCE MAY NOT COVER IT.

WHO KNOWS.. WE BOTH MAY BE IN AN EMERGENCY ROOM IF WE DON'T TAKE CARE OF OURSELVES NOW!

 

[xchocoholic]

I second going to see an integrative doctor.

Also tho the first thing they're going to tell you is to look at your environment, diet and living space, for toxins. Many, if not most now, are recommending a whole foods or paleo type diet MINUS whatever your intolerances are. For instance, I don't eat much poultry because it makes me sleepy.

You can Google common food intolerances for a complete list.

Dr Wahls has some great info on this but other functional doctors do too. I just found her info easy to understand.

tc .. x

ps. Also agree with relaxing about this especially when it comes to dietary changes. Go slow but steady and stay within your comfort zone. No need to add additional stress to your body.

 

[Goimurph]

Thank you all so much. It's nice not to feel so alone. JT, I can't tell you how much those caps help. I am starting to recover from a really bad few weeks. I had another endoscopy on Tues. I've been incapacitated since then. Yesterday I could speak more. Today I can walk better. Still tied to the couch. Starting to understand that certain medications take me from bad, to rock bottom. The last time it was this bad was when the neurologist tried me on keppra for possible seizures. This time I think it came from the sedative. I think.

Xchocoholic, my diet has been rock solid. 2 yrs ago I was dx with celiac disease. I went 100% gf...no gluten allowed in my house...I was very sensitive to it. then they took me off ALL grains except rice to see if that helped. No processed foods, 100% fresh fruits/veg etc. then they took me off rice...didn't make a difference. They figured it wasn't the food...except the gluten. Everytime they took something out, I seemed to get worse. 2 yrs ago I reacted to almost every food I ate.

I am going to start making appointments today. I like the idea of the specialists. I will go to NY. I know that realisticly it will take a long time and I need to help myself now. So I am going to start locally as well. Thank you for all the names. GG's dr. is close to me, and has excellent reviews but doesn't take my insurance.

today is a bit brighter. thank you

 

[Hip]

@Goimurph
If your gut is a major problem area (mine certainly is), then consider taking some probiotics and prebiotics. Some info on prebiotics here. These can make a big difference to overall health, as I discovered myself.

 

[xchocoholic]

Interesting. I was reacting to all foods when I was finally told about the elimination diet. My weight was in the 106? range. Down from the 120? range.

It took me about 6 months to he able to eat without feeling like I'd eaten glass.

I wound up on the paleo low oxalate diet after 2-3 years. Low oxalate due to kidney stones.


I just started experimenting with eating more gf processed foods and can tell I don't react as bad as I did at first but they're still causing insomnia myoclonus and 1-2 spots that are probably DH.

It's definitely a long haul for some celiacs to recover. I wasn't given any guidance from my doctors at the time o ther than the gf diet. My integrative doctor helped tremendously.

Everything else I learned was from Googling ....

Hopefully you've been tested for nutritional deficiencies, glucose problems and Hashimoto's. There's a long list of possible auto immune diseases associated with celiac disease tho.

good luck. x

 

[minkeygirl]

@Hip FYI as far as I know Garth Nicolson doesn't see patients, unless he's changed that.

 

[Goimurph]

what is the general consensus between Klimas and Enlander?

 

[SOC]

what is the general consensus between Klimas and Enlander?

I don't believe Klimas is taking new patients at this time. I see her associate Dr Rey, who is excellent.

 

[Goimurph]

I made some calls today. Left a lot of messages all over the state of MA. But more important I have an appointment with Dr. Enlander on Jan 28th

 

[tinek]

Hi,
Good luck with Enlander, I was there last year, unfortunately it did not work form me..
Please go prepared, check their website and know what they offer, he was very brief with me and it felt like he is giving a standard protocol to anybody who qualifies. They did a lot of testing, most of which I already had before, did not do some which I thought were important, ie IGG food sensitivities, they did the IGE though. If you have insurance check off they cover his visits, they paid mor mine.

The most important thing you can do right now is to get educated and keep trying things while listening to your body, it will let you know if you are going the right direction.

I did the most improvement since hitting bottom Last year and going on paleo diet since, if you have any digestive symptoms please check the thepaleomom.com blog or the Practical Paleo book. It helped me a lot, still way to go...