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Worth possible crash to travel for specialists?

Discussion in 'ME/CFS Doctors' started by Ocean, Feb 10, 2012.

  1. LHCTom

    LHCTom

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    Hi - I hope this doesn't sound too simplistic but does this make any sense? There are a number of hypothesis about exactly what is going on in any particular CFS/ME patient. Its not clear if there are a couple of mechanisms or one with multiple appearances. Plus there are other conditions with very similar symptoms. I would say it would help to be more specific about your exact family of symptoms and what tests you have had that point in on direction or another to get the best direction. I bet the people here combined can synthesize better than just building the list. A list would be nice but it a big project depending on the definition of a CFS/ME specialist. Where are you coming from? What stage of diagnosis are you at? Has almost everything else been ruled out or do you need to finish the "rule out" list. Your specific situation and stage is I believe critical to finding the best specialist or best set and in which order.

    The reason I say this is that I've encountered CFS/ME self proclaimed specialists many of which seem to come from the Alternative Medicine world and at the other end of the spectrum are the more mainstream doctors/PHDs from the research world and everything in between. Some are into very broad more alternative therapies, some more metabolic oriented, immune system focused, viral/infectious focused and immune/viral/infectious focused.

    The Immune/viral/infectious seem to lean toward anti-virals like Valcyte and or the new Valomaciclovir, the B cell agents like rituximab or immune modulators like Rintatolimod/Ampligen trying to address the root cause. These tend to be heavy duty and expensive but are supposedly trying to tackle the problem at the state of the art and near the root cause. There are only a handful of clinics working in this area so if your symptoms, testing and desire are too follow this road, there are maybe 10 people.

    The alternative doctors are not typically so deep at the research and theory level but often will prescribe some of these drugs but also all sorts of supportive type treatments that rarely address the underlying cause. They are however many more in this category but they may not really understand the latest immunological testing for example. Many double as Lyme disease specialists and CFS/ME which share many symptoms but are very different.

    If you were to provide some idea as too what you knew about based on tests like NK cell function etc.. what conditions have been ruled out... where you are coming from.... what your expectations are...... do you need symptom relief like pain, sleep etc.. There are those that focus on areas like the Methylation cycle blocks and other metabolic areas that look similar but are completely different conditions with overlapping symptoms.

    My sense is every doctor is unique at what the believe in and whether they are the alternative supportive with supplements etc...but lean away from most drugs and the type or heavy into anti-virals and immune modulators but shy away from helping with specific symptoms and then some I haven't found that can do it all.

    It goes on and one but can you see what I'm saying and how it might help you get more focused since its not going to be easy to travel and the more homework and specific you can get plus the more phone conversations or email exchanges the better before making the plunge to go see say Dr Klimas in Florida or Dr Peterson in Incline or Montoya at Stanford or Dr Kogelnik in Mountain View etc.. etc... Then many of these doctors and or clinics have long waiting lists.

    If you were to write up your situation, you could try and send it to some of these people and see if you can get their opinion on who to see if they are not too busy. Even though they are somewhat competitive on some level, they do know one another along with strengths and weaknesses from a different viewpoint than patients.
    ahimsa likes this.
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Ocean,

    While this is a good idea in theory, some of the best specialists have asked their patients not to report on the treatments they give on the web as they are being persecuted by their local medical authorities. So you would not be able to get all the information you need with an open thread.

    Sad, but many governments are harassing M.D.'s who treat ME/CFS medically rather than psychologically or who use experimental treatments.

    Best wishes,
    Sushi
  3. Ocean

    Ocean Senior Member

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    Thanks for your thoughts LHCTom. I don't like to give too much info that is identifying on public forums so unfortunately I can't go into great detail into my specific situation. But overall:

    I've been diagnosed by two rheumatologists as having CFS. I meet the definition of ME with the new criteria that came out recently. I also have some other health conditions that complicate the situation as well and may perhaps have some underlying relation to my CFS.

    Overall I think I have the typical symptoms. Most troubling probably are nearly constant low grade fever, very bad and long PEM, fatigue, flulike symptoms, inability to tolerate almost any med or supplement, including ones I could previously tolerate, sleep issues, and more. I feel terrible with flares and they come easily from activity, poor sleep, medication side effects, and complications from other chronic or acute illness. The flares can last quite long and it doesn't seem to take much to set them off, so that is a very troubling symptom as it causes me to be very low functioning. I believe I have OI and have been referred for testing.

    I've not had tests like NK cell function, specific viruses that may relate to CFS, that I'm aware of at least. That is exactly why I want to see a specialist. It is too much for me to gather all the info on what tests I should get and all that. If I could figure out all this stuff, I'd have been a doctor myself! The main testing I've had are the basic tests any rheumatologist would do that rule out other conditions in order to diagnose you with CFS. I've also been to an endocrinologist and am continuing to go so hopefully if there is anything wrong there he would find it.

    In order to know which doctors to contact, I will have to 1) find the names of doctors, I know some of the main ones but probably not all 2) find out which ones take insurance, what their costs are and all that 3) find out about waiting lists. 4) Get any additional info that might let me know if I would be a good fit for that particular doctor. For example I know I don't want to go to that chains of fatigue clinics (Teitelbaum). I just don't feel it's right for me. But I'm not able to find, and more importantly, understand information as easily on some other doctors. So I hoped to gather this info here and have help interpreting it but it seems it maybe is harder than I thought.

    Would the specialists actually look at my info and make recommendations? I never would have expected they would take or have the time to do that. But if that's happened in your experience, then I'll certainly consider doing that.
  4. Ocean

    Ocean Senior Member

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    Thanks Sushi. I would have though that in general info about what approaches they take (immune, viral, etc.) or what their theories they have would not be "secret" but maybe I am wrong there and that even that ties in to the issue you described above.

    I know many of the doctors do have some info on their sites and many patients discuss treatments openly online, for example I've seen that to be true of Dr. Enlander, Klimas, Peterson, or Montoya from what I can tell. Maybe they keep some things secret I have no idea, but I've seen lots of treatments they use mentioned publicly as well. So I think there would still be plenty of info I could theoretically gather that way. I'm not sure how many fall into the category of keeping info out of the public eye, but I'm guessing there are also plenty who aren't in that category, at least completely? Or am I wrong? I don't know enough about it, but just based on what I've encountered online that's the impression I've gotten.

    I invite anyone who feels comfortable sharing about their doctor but doesn't want it to be public to PM me and I would keep the info only for my own personal research purposes in decided what doctors I may want to try to see. Beyond that I'm not sure how else I can get info about the doctors if they choose to not reveal that info in any public way (web site, published material, patient accounts, etc.). I know I don't intend to go to any doctors and risk a huge crash and spend a lot of money and time if I don't know in advance basic things about how they work.
  5. Sasha

    Sasha Fine, thank you

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    Hi Ocean - I don't know if I'm missing something, but my impression is that there are very, very few US ME specialists so you maybe only have a short list to work through! I'm thinking people like Drs Klimas, Peterson, Bell, Cheney, Enlander... can't think of any more off the top of my head.

    If you do an advanced search on PR using each of their names in turn and specifying that the search should restrict itself to thread titles (rather than the content of individual posts), you'll get quite a bit of info that people have posted about their treatments. Some doctors do have info about their approaches on their websites.

    If that doesn't get you what you need, I would email or phone them and simply ask them your questions. It's entirely reasonable that a patient who is going to be paying loads of money should know what's on offer and expect to have some preliminary questions answered.

    Travel is a huge problem for you. I wonder if it's worth partly prioritising your choice by how close the doctor is to your home (or ease of journey, not the same thing, I suppose).

    Is there a thread just listing docs who specialise in ME in the US? Maybe it would be worth starting such a thread, including locations, if not. I don't recall such a thread and I'm sure a lot of people would find it useful.
  6. Ocean

    Ocean Senior Member

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    Thanks Sasha, I tried to start such a thread the other day but no biters! Just one comment so far.

    Yes I think there aren't too many doctors although just in the comment I got there were a name or two I wasn't familiar with so there may be a few more than just the "big" ones I've heard of?

    I think ease of travel will be a big factor for me, but if I'm going to travel I may as well look into them all because maybe a bigger trip, if I'm already going to take a trip anyway, would be worth it if the doctor seems a better fit?

    I don't know if it's from brain fog, ADHD issues, cognitive side effects from medication I'm on, or just not feeling well or all of those, but the looking through a lot of threads has been hard for me so I was hoping to gather the info in one thread in a clear, concise format. But I may have to try again to do what you suggest. For some reason I've just had a hard time gathering info and a lot of times I can't understand what people are talking about on this site, it's just is too technical for me. So I was hoping for some really basic and simplistic info on each doctor, rather than wading through a lot of threads I have trouble understanding. I've tried doing that with various tests or treatments I want to ask my local doctor about and just have never had any success understanding any of it. I never felt I had trouble understanding things, but this site has really made me feel that way. I guess I just don't do well with technical info and lots of scientific lingo that I'm not familiar with and most people on this site seem to be very comfortable in that area. Maybe I just need to pick one nearest to me, do a bit of research on that doctor and try to talk to a few patients if possible and if that doctor seems good, aim for seeing them. Maybe that would be a lot less overwhelming than researching 5-10 doctors.

    I guess the main ones I've heard of are Montoya, Kolgenik, Klimas, Enlander, Cheney, Peterson, Lapp. Maybe a few more. I have heard of Bell but don't really know anything specific about him. Of those I've heard of most often, I think I'm mostly interested in Drs. Enlander, Peterson, and Klimas but don't really know the differences among them, maybe they're somewhat similar in their approaches? I'm interested in Monotya too but I know he has a very long wait and I'm not sure how comprehensive he is, or if he is just limited to virus stuff.
  7. Sasha

    Sasha Fine, thank you

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    Hi Ocean - such a lot to weigh up! I don't think you should feel that you're somehow underperforming by not understanding all of what people say on the forum about their treatments. I don't, for sure - it's not part of my background or training to know about biological or medical stuff and I really have no idea how people know all this stuff! I find I don't know enough to judge its merits. Also, what works for one person might just be to do with their genetic make-up. So I share with your thinking that it's important to get a doctor, rather than rely on individual patients' recommendations (though I'm grateful to people for posting their experiences).

    Given what a killer travel is for you, I wonder if it's worth maybe choosing a doctor who would be a good enough match to what you want that you'd be fairly confident of getting some improvement within six months under their care, say, and who is relatively near to you. Then if you get that improvement, you could reassess whether you want to stay with them or go with another doctor who you think might be even better but who is further away. I'm assuming that a big trip would do you in for longer and worse than a small trip!

    Dr Enlander has a treatment page where he lists what he does and his office is in New York. I haven't checked out the others - might be worth a google.

    A pity you only got one reply to your thread!
  8. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I think this is much more of an issue in other countries where the government health agencies only consider psychological care for ME as appropriate. I mentioned this because I travel overseas to go to a specialist who doesn't even have a website for these reasons.

    Overseas travel is of course much harder, but one reason I chose to do so was financial. Perhaps unbelievably, it is less expensive for me to pay the plane fare and pay out of pocket for care, than to travel to a US specialist who takes insurance. Partly because much of the critical testing will not be paid by insurance anyway, and I have found the overseas labs used to be less expensive.

    I hope you find just the right doc!

    Best wishes,
    Sushi
  9. LHCTom

    LHCTom

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    Let me try another approach that I have used. I understand not wanting to share all your symptoms online. I've had a slow road leading me to finding CFS/ME specialists because it was obvious to me that although I meet the CFS/ME criteria, I became immediately aware that there are a number of other conditions that share symptoms and that the "real" CFS/ME may actually have multiple underlying causes and mechanisms. I have the advantage that I can afford to go outside my insurance. I am unfortunate that I had Kaiser insurance for my 30 year career and being quite healthy never considered their "issues". s far as I can tell, Kaiser doesn't seem to recognize CFS/ME in a serious way and its very hard to find a competent Kaiser Doctor who will take the symptoms seriously and even try to develop a differential diagnosis. That left me ill for years and since I had no outside Kaiser experience, I tried to drive my own differential diagnosis. I first got as much testing and evaluation as they would provide and then began seeing outside doctors. I eventually had a pretty good differentials list ( list of possible causes with overlapping symptoms). The better research hospital websites like Montoya's at Stanford among others proved a good start with the list of conditions they would like eliminated before seeing you. It seems the top people would like you to have had most of the differentials eliminated before seeing you since they do not want to do your doctors work. That makes sense until you realize many doctors and HMOs' like Kaiser can't be bothered with a spending the time and effort to work through the list. Here is Montoya's list from Stanford which was one of the ones I used to develop my own list:

    http://chronicfatigue.stanford.edu/overview/diagnosis.html

    Since I knew my history and symptoms plus what I'd been tested for, I was immediately able to eliminate many on the list. Then I systematically asked my Kaiser GP for help and got some things eliminated until he burned out and began to think its "in my head". I switched GPs but I suspect I've been labeled since other Kaiser specialists have made "telling" comments. So I did my best to get Kaiser to run tests and then found some local doctors mostly of the mixed western/alternative category to help me work through the rest of my list. I did this because I had both been told and read that some of the top specialists won't even see you unless you've done lots of testing and its looking more and more like real CFS/ME which until recently had very few solid bio-markers.

    As I worked my way through the list, I did make 3 discoveries which I hoped were the "answer". First I found I was deficient in Testosterone and began shots. Didn't help but the fact my HPG axis was broken was a a key lead. Then I was diagnosed with mild to moderate Sleep Apnea which varied in severity from night to night. Again I thought I had it. I had surgery by one of the best at Stanford and my Apnea events stopped but again, it didn't help most of my symptoms. I currently use a Pulse Oximeter which connects to me PC via USB so I can monitor my O2 saturation all night and I'm still ok.

    Then I began more testing and was diagnosed with IBS. IBS is partly a diagnosis of convenience sine it says nothing about the underlying cause. Since I also had weird allergy, high IgE and regular hives, that hinted I might have a parasite causing the IBS and potentially all my symptoms. My GI specialists laughed but I insisted on Flagyl ( albeit the worst anti-parasitic) and I had a near magical collapse in all my GI symptoms and some others. Then after 2 weeks, it came back. I tried Flagyl again and the process repeated. I now knew the Flagyl was doing "something" important since the impact was so pronounced. Even the GI specialist had to admit it was meaningful reluctantly. I went to my outside doctor who had some stool tests done and a DNA/PCR test found Blastocystis Hominis ( or Blastocystsis SP ). He gave me 30 days of Alinia and I had a third stoppage of the same set of symptoms. Alinia is about the best single anti-parasitic treatment for BH. I'm still free of the GI problems and my weird body pains in my joints and muscles are much better. I retested and its still there so I'm still pursuing that.

    About this time, my differentials list was getting pretty short and I decided it was time to find a research caliber CFS/ME doctor to get the immune system testing since most doctors don't have a clue about NK cell activity and B cell problems. I did arrange a IgG subclass test myself via an online service and found I was very low in 2 of my IgG subclasses. I also found on my own I had high HHV-6 and HSV-2 titers, Mycoplasma and Toxoplasmosis. That led me to to go see a specialist in the viral/immunology to have my immune system tested and possible try the anti-virals or immune modulators depending on what is discovered. That is where I stand right now. I'm still trying to rid myself of the BH and have seen a specialist in viral/immune CFS here in the SF Bay Area.

    So why did I tell that story. Its because I found it almost impossible to even find a doctor capable of doing a proper differential diagnosis. So I ended up creating my own using the best info I could find and then using my Kaiser doctors, outside doctors and online blood test services to work my way through almost everything. I know this is difficult when we have no energy and if you can't afford some of the outside insurance elimination but I found I had no other choice. Feel free to message me if you want any pointers on how to get some of the most relevant testing done before you go see one of the top specialists. If you don't, they may will be reluctant to test for all the possibilities and will want you to come with a referral and test results showing "real" CFS/ME is likely.

    Hope that helps
  10. WillowJ

    WillowJ Senior Member

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    There's also Dr. Lerner, who takes an antiviral approach, and will evaluate the heart of every ME/CFS patient who comes to him.
  11. taniaaust1

    taniaaust1 Senior Member

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    Sounds like you are on the right track with what you are doing.

    After having ME for 14 years and seeing at least 3 different CFS specialists, I still havent had those tests done. The ones Ive seen thou arent like the world class specialists which very few of us ever get to see

    . It too, the tests they do, would all depend on the individual things "they" themselves think is important in this illness. So thou you here of all these tests at this site.. be aware that not many of us have had all those.

    You may feel way behind with things due to having a doctor which dont know much.. but you arent really all that behind. It sounds too that you have already developed a good awareness of some of the top doctors around even if you havent managed yet to understand what kind of protocols they do.

    You are right that we do need a post listing all the world ME experts with something like a paragraph describing their treatment focus. That would be very helpful to many. (maybe a group of us could put something like that together some time).
    ....

    The ME/CFS Australia does have a reasonable ME/CFS website with info on it which could be helpful to you or your doctor and stuff on it which is written for doctors.

    http://sacfs.asn.au/medical/index.htm (if you scroll down the page you may see some links which could be useful.. the info for doctors there is fairly understandable for lay person too and can give you ideas of some tests etc).
  12. Ocean

    Ocean Senior Member

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    Thank you so much for that encouragement, Sasha. There really are no doctors too close to me so I think I'll take a few main ones that I know of and just look a bit into those and check out their costs and waiting lists. And then, make the decision of if I'm actually well enough to travel.
  13. Ocean

    Ocean Senior Member

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    Wow thank you ALL so much for the encouragement and the information. I feel more confident and less stressed about the whole process.

    LCTH Tom, I will definitely look at that list you provided and share it with my doctor to see if I've had all the testing or not. Thank you.
  14. LHCTom

    LHCTom

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    You are quite welcome. I'm happy to share what I've learned as I almost always end up learning even more. Its really sad that so many people are suffering and struggling with a medical system that is badly broken. CFS/ME is a perfect example of a disease that shows how the GP->Specialist model simply doesn't work. CFS/ME and many other conditions cross so many specialty boundaries that most typical GPs I've encountered just send you upstream to whoever fits some of your symptoms, often without much thought. Then the specialist wonders why someone with neurological, pain, headaches, sleep etc.. problem was sent to him. He gets mad and does a few tests and you are back to square one except the GP is now tired of dealing with you and doesn't want to embarrass himself with the specialists. This happens a few times until the GP asks the psychiatry question to get rid of you. It would be entertaining to create a flow chart of how the current medical system functions for cases like CFS/ME. A first year Computer Science or Math student could detect and probably fix the problem in 5 minutes by redesigning the system. I know I could. Its frustrating and sad and here we sit trying to diagnose ourselves on forums. That alone should be a hint to the brilliant medical minds that something is broken and its not US! :)
    SOC, ahimsa and WillowJ like this.
  15. Ocean

    Ocean Senior Member

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    You've captured it perfectly Tom. I'd love to see that flow chart. ;) This is what I'm hoping I might be able to escape by possibly seeing a CFS specialists. It would be great to have someone look at the whole picture. And the truth is I have other conditions going on too and I feel everything that's going on is inter-related, it would be great to have a doctor look at all of that, not even just the whole CFS picture, but the entire health picture altogether. Doctors always ask about a wide variety of things in their forms but then look only at a very narrow window in testing and treatment. It's tough.
  16. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Where/how did you get Pulse oximeter?

    Gg
  17. hurtingallthetimet

    hurtingallthetimet Senior Member

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    just wanted to say that whatever your decision may be your supported and i hope that it goes great...myself i go about an hour or longer depends on traffic but hubby has to take off and drive..i have to take anxiety and pain medication because my nervers cant take the traffic and crowds and overwhelming of everything....thank God for my hubby driving me i dont think he knows how much it means..but i have crash from that..so a very long trip seems so hard...i use to travel so very much...youd never know it now but i did....and id drive thousands of miles on my own...now i can only go where i feel safe...i feel like ive lost so much...my extended family doesnt live near me and i miss them so much at times...i need them so much at times...but cant afford plane ticket and flying is crashing also...the drive is soooooooooo far its out of question....i cry so much i miss them...i hate these illness...

    maybe you couold get all the info you mentioned...and then if you feel like it or have someone to help you break down the trip..the pros and cons and make stops if possible if driving etc. to make more comfortable..take medications etc...whatever you decide i hope it turns out how you want and that you dont crash...i crash just picking up prescriptions...crazy...

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