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

[Goimurph]

I spent 5 hours in Enlanders office. 2 hours until I spoke to him, 3 hours later my exam...they sent the tech home and couldn't do the nerve test....It was a nightmare.

I felt the same way, that he is just treating the masses with the same bandaid. Which I think that a lot of dr's do, and that may work fine. But....it just seemed very cookie cutter, and assembly line.

I am supposed to have a phone consult next. I haven't made the appointment yet. but I will do that and see what he comes back with.

I saw a functional md that I liked very much. He seemed much more comprehensive on the testing he did.

I am just so lost and have been in a MAJOR crash for the past 4 weeks.

I want someone to tell me how to get out of it and how to make sure it doesn't happen again and I'm just not finding that.

I read a lot on line when I can but it is exhausting.

 

[tinek]

I had to go back for that extra test too.
I would go see that functional md if you have a good feel abouth him, they are more educated in the alternative approaches and testing and the traditional medicine does not have much to offer us anyway.
Try also doing some small dietary changes, like going gluten free for a few weeks, it is an easy experiment you can do yourself.
If I had one book to recommend myself try finding in your library The Practical Paleo.

There is hope, keep trying, you will find more info at this forum than from any MD.

 

[Goimurph]

Oh I forgot to add, I have celiac disease and have been 100% gluten free! skin care, makeup hair products as well.

Am really mostly paleo bc tried taking the other grains out as well. They thought I was having problems with trace glutens so they took me off all processed foods.

Oddly, every time I take something out of my diet I get worse. Symptoms get worse.

I guess maybe that's a crash too? I can't figure this whole thing out.

 

[SOC]

I spent 5 hours in Enlanders office. 2 hours until I spoke to him, 3 hours later my exam...they sent the tech home and couldn't do the nerve test....It was a nightmare.

I felt the same way, that he is just treating the masses with the same bandaid. Which I think that a lot of dr's do, and that may work fine. But....it just seemed very cookie cutter, and assembly line.

I am supposed to have a phone consult next. I haven't made the appointment yet. but I will do that and see what he comes back with.

I saw a functional md that I liked very much. He seemed much more comprehensive on the testing he did.

I am just so lost and have been in a MAJOR crash for the past 4 weeks.

I want someone to tell me how to get out of it and how to make sure it doesn't happen again and I'm just not finding that.

I read a lot on line when I can but it is exhausting.

No ME/CFS specialist can do an individualized treatment plan at the first visit. They need to run a lot of tests to see exactly what needs to be treated. It's fairly common to get a basic "cookie cutter" treatment plan the first day. It's just stuff that works for most people and is relatively safe for all. It's simply a starting point.

It can easily be 6-8 weeks before all your labs are back and your specialized treatment plan is in place. That's the way it is with all kinds of complex illnesses. You're not going to find someone with a quick fix. It just doesn't work that way.

 

[Sushi]

...


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.

NOTE: Dr. Kenny De Meirleir is also seeing patients in the US now. He has a US license and travels to Reno about every 10 weeks to see patients.

Sushi

 

[Goimurph]

No ME/CFS specialist can do an individualized treatment plan at the first visit. They need to run a lot of tests to see exactly what needs to be treated. It's fairly common to get a basic "cookie cutter" treatment plan the first day. It's just stuff that works for most people and is relatively safe for all. It's simply a starting point.

It can easily be 6-8 weeks before all your labs are back and your specialized treatment plan is in place. That's the way it is with all kinds of complex illnesses. You're not going to find someone with a quick fix. It just doesn't work that way.

Thank you...I am learning this. It is just so hard when I feel like I have lost so much valuable time over the past 3 yrs being passed from dr. to dr.

I am looking forward to some sort of guidance and direction. Where my pcp could offer none.

 

[SOC]

Thank you...I am learning this. It is just so hard when I feel like I have lost so much valuable time over the past 3 yrs being passed from dr. to dr.

I am looking forward to some sort of guidance and direction. Where my pcp could offer none.

ME/CFS is an extremely complicated disease with no established treatment for the cause because we don't even know the cause. Effective treatment (not a cure) is basically symptomatic treatment. Since not everyone has the same symptom set, not everyone gets the same symptomatic treatments.

The first step is usually to get started on things that help most patients. Most commonly that would be some OTC supplements -- B12, vit C, fish oil, CoQ10, things like that -- and guidance on pacing. Possibly you'll get some pain or sleep treatments early on.

The second step is to deal with some things that are common but need to be tested for, like low vit D, thyroid problems, and such. You'll probably also be tested for common pathogens and get treatment for those as needed. Maybe you'll get some immune treatments if you got immune testing in the first round.

After that the doc will start picking away at more symptoms as your treatments resolve some symptoms but not others. Pain and sleep usually need to be dealt with if they weren't handled earlier. Various kinds of OI-related problems (NMH, POTS, low blood volume) might be addressed. Gut problems may be investigated. More pathogens might be investigated if you're still symptomatic.

There is nothing fast about the process. Many of us are years into good treatment and our docs are still finding ways to tweak treatment to improve our quality of life. Few, if any, of the treatments give overnight big improvements. Some of the most effective treatments can take months to years to get the full effect.

This is a reality of the illness. There are no easy answers, nor are there any fast solutions. We don't get better quickly. The people who seem to have the most luck in improving their health are those who can stick with long-term treatments (including pacing) and who have the persistence to keep picking away at continuing symptoms. Patience and determination are necessary to make progress.

Most of us empathize with your frustration with losing so much during the years our doctors failed to diagnose and treat us. I think the current average time to diagnosis is something like 4-5 years, so you're ahead of the game if that's any consolation. The good news for you is that it seems that people who get aggressive treatment within 5 years have a much better chance at remission than those who don't get aggressive treatment until later in the illness (or not at all). Dr E is one of those doctors who can get you that aggressive treatment. You just need to be patient with the process and not expect overnight miracles.

 

[Goimurph]

ME/CFS is an extremely complicated disease with no established treatment for the cause because we don't even know the cause. Effective treatment (not a cure) is basically symptomatic treatment. Since not everyone has the same symptom set, not everyone gets the same symptomatic treatments.

The first step is usually to get started on things that help most patients. Most commonly that would be some OTC supplements -- B12, vit C, fish oil, CoQ10, things like that -- and guidance on pacing. Possibly you'll get some pain or sleep treatments early on.

The second step is to deal with some things that are common but need to be tested for, like low vit D, thyroid problems, and such. You'll probably also be tested for common pathogens and get treatment for those as needed. Maybe you'll get some immune treatments if you got immune testing in the first round.

After that the doc will start picking away at more symptoms as your treatments resolve some symptoms but not others. Pain and sleep usually need to be dealt with if they weren't handled earlier. Various kinds of OI-related problems (NMH, POTS, low blood volume) might be addressed. Gut problems may be investigated. More pathogens might be investigated if you're still symptomatic.

There is nothing fast about the process. Many of us are years into good treatment and our docs are still finding ways to tweak treatment to improve our quality of life. Few, if any, of the treatments give overnight big improvements. Some of the most effective treatments can take months to years to get the full effect.

This is a reality of the illness. There are no easy answers, nor are there any fast solutions. We don't get better quickly. The people who seem to have the most luck in improving their health are those who can stick with long-term treatments (including pacing) and who have the persistence to keep picking away at continuing symptoms. Patience and determination are necessary to make progress.

Most of us empathize with your frustration with losing so much during the years our doctors failed to diagnose and treat us. I think the current average time to diagnosis is something like 4-5 years, so you're ahead of the game if that's any consolation. The good news for you is that it seems that people who get aggressive treatment within 5 years have a much better chance at remission than those who don't get aggressive treatment until later in the illness (or not at all). Dr E is one of those doctors who can get you that aggressive treatment. You just need to be patient with the process and not expect overnight miracles.

Thank you for that. You have no idea how helpful that information was to me.

 

[heapsreal]

Its hard to remain positive when we feel desperate, feel like crap etc etc. It does play tricks on your mind for sure. I found it hard to rest at first as i felt i needed to do something now to get better. It takes time but u have to learn to just go with it even the crappiest days but try not to get in knots about it because it just doesnt help. Pointless worrying about something we have no control of which makes it hard.

Go after some of your worst symptoms maybe sleep and pain?? and this can help improve things some and as the good (improved anyway) days come maybe do some of your own research on this illness.

Its something to talk over with your doctor but we can feel depressed with this illness but its just a symptom that anyone would feel in our shoes. Theres some good natural treatments u can try like 5htp but also talk with your doc maybe about antidepressants, not only can they help your mood but they can also help pain and sleep so its a triple whammy. The issue with them is that many of us are sensitive to them and need to start on much smaller doses then a normal person maybe a 1/4 or an 1/8 of a normal dose. These things arent a cure but can help one to cope better, i say help u feel better about feeling like crap.

We all have days when we are fed up, but now u know this site, im sure u will make friends who u can chat with and vent, people who understand what u are going through, but also good to talk sometimes about something totally different too.

 

[SOC]

Thank you for that. You have no idea how helpful that information was to me.

Glad to hear it!

 

[Hope123]

If you already know this, excuse me, I'm not on here that much anymore but one the first things you need to know is DON"T PUSH YOURSELF mentally or physically. Balance that with rest - "pacing". Push and some have ended up worst than they were. Many docs will tell you you need to exercise or push yourself to get better.

Read about "crashing" - post-exertional malaise - here:

http://solvecfs.org/wp-content/uploads/2013/10/pem-series.pdf

Then read about "pacing"
http://solvecfs.org/wp-content/uploads/2013/06/080505.pdf

You can also read and take to an open-minded doc the IACFS/ME Primer. Many of the top doctors named above wrote or helped review this:

http://www.iacfsme.org/Portals/0/PDF/PrimerFinal3.pdf

 

[Soundthealarm21]

@Goimurph

Of all the tests they ran was toxic mold one of them? (Aflatoxins, Trichothecene, ochratoxin A)?

 

[Goimurph]

@Goimurph

Of all the tests they ran was toxic mold one of them? (Aflatoxins, Trichothecene, ochratoxin A)?

No, no toxic mold, I don't think...though the allergy tests all came back fine

 

[end]

No, no toxic mold, I don't think...though the allergy tests all came back fine

KDM seems to think Mold exposure raises your TH2 so there may have been an indirect test for Mold they may have done?

 

[end]

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.

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.

Exactly. And even if they say they treat Fatigue illness - there not always being honest

My last consult consisted of "raising your testosterone level will make you feel lots better" like come on, have soooo been there done that decades ago...

 

[taniaaust1]

Exactly. And even if they say they treat Fatigue illness - there not always being honest

My last consult consisted of "raising your testosterone level will make you feel lots better" like come on, have soooo been there done that decades ago...

The testosterone thing.. I got hit with that one by a specialist too. I did go along with that treatment and had a testosterone implant then put in cause I did have an actual deficiency of it showing up on my tests. Unfortunately at that point I didnt know that most ME people (well females anyway) react poorly to testosterone and usually get side affects. I was wanting to get the implant removed within days of getting it put there due to the bad affects it had on me (and it didnt help my fatigue either!)

 

[taniaaust1]

No ME/CFS specialist can do an individualized treatment plan at the first visit. They need to run a lot of tests to see exactly what needs to be treated. It's fairly common to get a basic "cookie cutter" treatment plan the first day. It's just stuff that works for most people and is relatively safe for all. It's simply a starting point.

It can easily be 6-8 weeks before all your labs are back and your specialized treatment plan is in place. That's the way it is with all kinds of complex illnesses. You're not going to find someone with a quick fix. It just doesn't work that way.

Well said SOC.

No one can do an individualized plan till all the tests come back, any ME/CFS specialist of real value will form your treatment plan based on that. First visits with any ME/CFS specialist are usually focused on getting ones medical history and running various tests.

 

[end]

The testosterone thing.. I got hit with that one by a specialist too. I did go along with that treatment and had a testosterone implant then put in cause I did have an actual deficiency of it showing up on my tests. Unfortunately at that point I didnt know that most ME people (well females anyway) react poorly to testosterone and usually get side affects. I was wanting to get the implant removed within days of getting it put there due to the bad affects it had on me (and it didnt help my fatigue either!)

Same. All I felt was more aggression and disturbed sleep. Meh

 

[Goimurph]

to update....

I saw dr. Elson, and stayed with him. I didn't really agree with Dr. Enlander. He told me I was classic CFS/Fibro. I have pain, but it does not seem to be consistant with Fibro.

I followed my gut. He ran igenex labs for lyme, I came back poss igm wb, but neg igg. Which makes sense, since he also dx CVID. As well as finding klebsiella pneumonae in my gutt.

though he is now questioning if it is really lyme, though none of the other viruses it could've been came back positive.

I was started on abx in the end of Feb/ I am slowly improving. I am still housebound but can get out in a wheel chair for short periods of time.

I am still waiting to see Felsenstein on July 30. I can't believe all that time has passed. I am hoping that she will be able to help as well. I am a little apprehensive though.

 

[Gingergrrl]

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.

@Hip, This is the first time I have heard of Dr. Garth Nicholson and he is only about 1.5 hrs from me. Does he treat CFS patients clinically or only do research? I have an appt with another specialist next week but was just curious re: Dr. Nicholson. Has anyone here ever seen him? I looked at his website and it was unclear.

@Goimurph I wanted to add, please do not give up and it takes a long time to find the right specialist and treatment. It seems like there is a lot of trial and error involved and I admire your effort and persistence and it gives me hope.