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Best Doc to see?

Discussion in 'ME/CFS Doctors' started by Scavo86, Mar 21, 2012.

  1. Scavo86

    Scavo86 Senior Member

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    Hi All

    Just looking for a brief bit of advice here...I have an inheritance which will see me able to travel to the States from England for a proper(!) consultation with a Dr who actually knows about ME/CFS, how exciting. Just wondering who would be your choice, providing I can get an appointment, should I be going for Klimas, Peterson, Enlander, Cheney or some other? I am a 26 year old lad who is not too worried about being 'aggressive' in a treatment approach as I have a great set of family and friends who look after me well and I have never (thank god) been in a bedbound or even housebound condition. However, now I am nearing the end of my degree at university I know now is the time to get sorted with my illness as much I can do if I want to have any kind of a career.

    So, in short, with all your experience, who do you believe would be the best Dr to go see?

    Many thanks in anticipation of the assistance, and I hope you are all as well as can be :)

    Rob x
  2. chili

    chili

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    I decided on Peterson-he put CFS on the map, has the most experience with Ampligen of anyone in the world, and isn't afraid to use other treatments, including cidofovir and valcyte. He is compassionate and aggressive. Book early though, because his waiting list is huge.
  3. Esther12

    Esther12 Senior Member

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    Hi Rob.

    There was another thread similar to this recently, and I explained that I didn't think there were treatments/doctors worth making really significant sacrifices for. If you have aristocratic style inheritance, and money is really not a concern, it could be worth making speculative trips to see people, but if you have limited funds which will be rapidly depleted by trips to the States and the cost of the doctors there, then I'm personally doubtful that the benefits will outweigh the costs.

    I'm really sympathetic, and wish I had more hopeful suggestions to make.

    The best thing doctors can do for CFS is to find an exclusionary diagnosis... the trouble being that so many different conditions can cause the symptoms of CFS that this is difficult to do. It could also be a wild goose chase, as there are lots of people for whom the cause of symptoms is unknown, and we do not have effective treatments - this can easily lead to quackery.

    If you have support from others, is there any way that you could move in to part-time employment? Or part-time post-grad work? Looking back, I think that I could have managed to continue my academic work part-time, as I was lucky enough to get on with my professors, etc. Instead I decided to commit myself to following the advice from the NHS, after being reassured that this would lead to me recovering, and that did not go well. Often positivity is worse than realism, and unfortunately there is still a great deal of tolerance for psychosocial manipulation within the way the NHS treat patients diagnosed with CFS.

    Hopefully you will improve naturally, or find an alternative diagnosis... or maybe research in to CFS will move forward in a way that's helpful to all of us.

    While things around CFS are so uncertain, I'd advise trying to think 'How can I have the nicest time possible, even if I don't improve?'

    I know that this is not what any 26 year old lad who is just approaching graduation wants to think though. Good luck with everything.
  4. lnester7

    lnester7 Seven

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    Well In my case. I am not sorry I put in the money into it.

    I went to see Dr Rey (At Klimas) and I went from a 4 to a 7 in the activity scale in 2 weeks. I am still at beginning of treatment (imunovir+ equillibrant) but EVERYBODY comments in the difference in me. Is still early and I will keep you posted but I am living proof of trying to figure out by myself Vs specialist. At the end I am spending less money in supplements and less relapses trying stuff that shouldn't have tried to begin w.
  5. lnester7

    lnester7 Seven

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    Waiting lists

    By the way I went to See Klimas clinic but I got into everybody's waiting lists and got in line w all the mayor players (still am) so what time are you willing to wait is also a factor.
  6. SOC

    SOC Moderator and Senior Member

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    I'm not sorry I put money into aggressive treatment, either.

    Dr Lerner helped my college-age daughter go from barely able to stay in college to full remission in 2 years. She was significantly improved within 2 months. However, Dr Lerner wants to see patients on Valcyte (what my daughter was taking) every 6 weeks, which I doubt is realistic if you're coming overseas. Still, my point is that aggressive treatment can be well worth the expense.

    Which doctor would be best to see probably depends on your symptom subset. The doctors who seem most versatile (to me) are Drs Petersen, Enlander, and Klimas/Rey, so if you want the most testing and most options for treatment, they might be the ones for you

    While Dr Petersen would be wonderful to see, he has a long waiting list and doesn't see everyone (or so I hear). You can get an appointment with Dr Rey fairly quickly. I think the same is true for Dr Enlander.

    Have you thought about KDM in Brussels, Belgium? It might be a cheaper trip which would leave you more money for treatment.
  7. Ocean

    Ocean Senior Member

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    Inester, that's wonderful to hear. I'm the one who started the thread on whether the cost of seeing a specialist would be worth it and it's great to hear how well you are doing especially so quickly. I guess part of the decision has to be "how will I feel and what will my situation be if I spend this money and get no better or even get worse." If the answer is something that is acceptable enough that it makes the chance of possibly improving worth it, then trying a specialist it would be a good decision. In the end, unless the cost is inconsequential financially to someone, there is always the element of risk. It seems some have great improvement as you did and some don't. I think how much money it costs relative to what one has would be a big factor, as it would be very hard to spend everything only to find that you're no better and have lost what savings and cushion you did have. From what Scavo wrote, it sounds like money is not an issue, so Scavo seems to be in a good situation for trying a specialist. I love hearing both the positive and negative stories because it really helps me in my decision making process. I'm so glad you've improved so much. I can only imagine how great that must feel.
  8. Scavo86

    Scavo86 Senior Member

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    Early days already on this thread and some great responses, lots of food for thought, and I urge you all to keep the replies flowing, lol. I like hearing the positives and negatives and was particularly interested by Esther's response which certainly struck a chord, however I fear I am too stubborn and headstrong not to carry through with this plan and head Stateside for some questions answered, if not some treatment. I should say at this point that we aren't talking millions when it comes to the money (I wish), but I reckon that if I am going to do this trip then I am going to do it properly. I feel as if I am at a crossroads in my life what with graduation and now is the time to either sit back and accept my limitations, which whilst that isn't my natural inclination I would actual do it if this plan fails, or grab the ME by the balls as it were and shake it up a bit and see what occurs. I am fortunate in that I feel I am just on the edge of being able to have a fully 'normal' working life but in saying that I have seen a deterioration of my condition upon having a busy final term at uni and worry that this would be replicated, and perhaps made worse, when I enter the 'real world'. I am rambling now, haha, and whilst I enjoy talking about myself this thread is all about you guys & gals and your experiences/expertise so let the knowledge carry on flowing :) xx
  9. Ocean

    Ocean Senior Member

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    Scavo, whatever you decide I hope you will follow up with us and let us know how it goes. I'm not sure if one doctor may be better than another depending on your particular symptoms too. I guess the main ones are fairly comprehensive. Enlander in particular seems to offer quite a few approaches. I really don't know much about each specialist though, I wish I did. I hope this really goes well for you.

    ETA: I have the same thoughts as SOC regarding which docs may be best for someone overseas. Both Enlander and Klimas seem like they may be fairly to work with from afar once you've seen them. And I wonder if you'd considered going to Brussels also.
  10. Esther12

    Esther12 Senior Member

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    Best of luck with whatever you decide.

    I really understand your urge to find a way to recover. When I look back at my own experiences, I feel as if I was led astray by that urge, so want to encourage caution... being on the edge of a 'normal' working life could be worse, and all medical treatments bring risks with them, not just the time and resources involved.

    Saying all that, you seem keen to take a gamble on it, so I certainly hope that you find something helpful. Good luck!
  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I am very happy seeing De Meirleir--he has helped me a lot and total expenses are less for me (even with travel from the States) than seeing a US specialist. He will also work with you by phone once you have seen him.

    Ocean, for me, I decided to sell a home and rent in order to have money for treatment. I am glad I did as I have benefited so much.

    Best to all,
    Sushi
  12. Ocean

    Ocean Senior Member

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    Wow, Sushi you took a big risk. I'm so glad it paid off. I'm guessing when you took that chance you knew you could handle the possibility of possibly losing that money and not getting better but weighed the costs and decided it was worth it.

    The money we have we use to pad our income for expenses we would not be able to afford otherwise, some of the basic things we need like some healthcare costs, etc. so I worry about losing that money since in a way it's not really extra extra, it helps pad out our finances to compensate a bit for my loss of income and to be available in case of emergencies. We have no other cushion or support. But I don't want to get off on too much of a tangent on Scavo's thread talking about me ;) I too thought of De Meirleir for Scavo since I know you and others have had success with him and he's in Europe anyway.
  13. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Ocean,

    It was a risk but I knew the odds were in my favor as about 60% have gotten better on the treatment I wanted to try. But the risk of getting worse with no treatment was worse. Some doctors think that we will usually get about 5% worse each year we are not treated. Of course that isn't true for everyone. Some get better with just aggressive rest. But I felt I wanted to address root causes as even if you get better resting, you are always at risk of relapse till you address the underlying causes.

    I have been sick too long not to take some risks, but I research them carefully and knew I matched the sort of patient that did well on this treatment.

    Best wishes to everyone struggling with these very real issues.
    Sushi
  14. Ocean

    Ocean Senior Member

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    Sushi, was it through test results that you knew you'd be a good for for his protocol or something else? I think that type of approach, finding a specialist that may best fit one's particular case, is the ideal way to go about it, but how exactly is that figured out? I've read a ton on here as well as followed many links out and yet still have no idea how that determination would be made. Is it done based on symptoms, lab results, a combination of those, something else? And once you know your own profile, how do you know what type of patient best fits with each doctor's approach? What specific type of research is giving you that info?
  15. Jenny

    Jenny Senior Member

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    Like Esther, I would encourage caution. Some treatments are risky, for example I took a long time to recover from a course of low dose naltrexone. Also, as far as I am aware, there are no treatments that will give us a cure.

    If you are on the verge of a normal life, you may well recover to a large extent without any treatment. I know many who have. Also when I was 95% well, I had periods of relapse for a few months after which I was back to near normal again for years without any treatment.

    Good luck.

    Jenny
  16. Scavo86

    Scavo86 Senior Member

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    Thanks all...to flesh out my case a bit further, I had a Glandular Fever/EBV onset back in 2008, and these days my most significant symptoms are neurological in terms of brain fog. I feel I am a textbook case of viral onset in the sense that I suffer from hot flushes, concentration difficulties etc but nothing at all in the way of pain and those kind of associated issues. I don't know whether that makes a difference in terms of seeing a particular Dr. Thanks for throwing Dr de Meirleir (sp?) into the mix as well, will get googling, what kind of treatments does he favour?
  17. Jenny

    Jenny Senior Member

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    Another possibility is trying a course of Perrin lymphatic drainage massage treatments first. He doesn't have long waiting list.

    In an ME Association survey,this treatment had good ratings.

    http://theperrinclinic.com/
  18. Jarod

    Jarod Senior Member

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    Here is a webpage that will give you an idea of infections you should check for. Find a doctor that can test for these, that seems like a good starting point.

    http://chronicfatigue.stanford.edu/infections/

    I would start with learning vitamins and diet with a doctor skilled in those areas. Learning about methylation, vitamin D, folates, b12, magnesium, and just the basics should help you stabilize at least. Get more agressive if those things do not work. Start easy and safe first.

    You can blow a pile of money if you get a doctor who wants to try all the latest and greatest stuff on you, but that is not necessarily the best way to get better.
  19. Jarod

    Jarod Senior Member

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    interesting! maybe that is why Yoga helps me some.
  20. justy

    justy Senior Member

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    Hi, i have often fantasised about which specialist i would see if i won the lottery and could travel. My thinking goes a bit like this - Dr Byhron Hyde in Canada - he ruthlessly roots out misdiagnosis and in a very high percentage of his patients he finds and alternative diagnosis - that may be treatable. The downsides is the expense of all that testing - MRI's the works, also not sure if he actually has a good treatment for those he does find to have M.E. Next i would consider Dr Klimas - i hear such good things about her and she has done a lot of work with the immune system. Dr Enlander could be good - i think hes in New york. so not so far to travel - almost a hop over the pond, plus he's up on latest treatments - GCMAF and Ampligen (which might swing it for me as id like to have a go at that) also he comes over to ireland and london and you can sometimes see him there - keeping costs down - although of course if you where having soemthing like Amligen youd either have to stay a long time in the states or travel a lot.
    Dr Peterson would also be on my list, because hes been there since the beginning and knows so much.

    I currently am a patient of Dr Myhills, but due to money constraints i cant have more than minimum testing - and that years apart as i save for each test and try out a usually natural treatment for it. I also cant afford to see her or have phone consults more than once a year. I have though had some gains using her approach and if i had the money she could arrange more testing and more aggresive treqtments - perhaps antivirals. so my lack of more improvement could just be from a lack of funds - most everyhting she has helped me with has been more or less right though.
    I would caution you against thinking that you can get this thing permamnently licked. I first had aM.E in my 20's and wasnt that sick for very long - i was probably at the level of functioning you are at now. Eventually over afew years i thought i had fully recovered and went back to a full on hectic life with kids, part time work, voluntary work etc. I now realise that was a big mistake and i would have been better off learning to slightly downgrade my expecatations and continue pacing my life. I had a good many years in near remission - almost as well as other people, but 4 years ago i caught measles and i have had a horrible 3 years very very very ill - severe at times and only now through extreme rest and suppelements am i getting my fucntion back - even then i am stilol more or less housebound - onyl able to go out for 2 short trips a week, or one long one, anyhting more and i crash right down again. On the other hand you are young and it would be best to hit it hard now. If i were you i would attack the immune system approach - testing for infections and ant virals as well as looking at the gut for bacteria, infections and parasites and treating them aggresively.

    Please do keep us up to date with what you decide, and with your treatments? it is so helpful for all of us to hear how treatments and doctors are.
    Take care, Justy.
    Ocean likes this.

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