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Dr Enlander, treatment costs?? + Scandinavian/European patients?

Discussion in 'ME/CFS Doctors' started by Moaluv, Jan 25, 2011.

  1. Moaluv

    Moaluv

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    Hi!

    This is my first post here. I have had cfs for 5 years, or I've been sick for longer than that, but I've had the diagnose for around 5 years. I'm 28 and live in Sweden. Lately I've been looking at alternatives for treating my cfs outside of Sweden as there is no proper treatment being offered in Sweden at present.

    I found dr Enlander in NY and got a good impression of him and the treatment he offers.. His option seems like one of the most affordable too I think.. I'm not sure if I would be able to travel to the US considering how sick I am. I found out a couple of days ago that he has a consierge practice though which is something I've never heard of before but which apperently means that you could get help from him without having to travel to the US. It costs 5000 dollars for the first year though, not including medicines.. and 3000/year for year two and subsequent years.

    On the other hand it seems like if the medicine cost is lower than in a lot of other treatment options.. I havent yet been able to figure out how much treatment would cost approxamitely per month or so though.

    Anyone here who has been seing doctor enlander and that could give me an estimate on how much the "average" patient would spend on medicine/injections/supplements a month? Does the cost go down after a year or so or does it stay on the same level cost-wise for years?

    Also; I'm looking for scandinavian patients who is seeing or has been seeing dr Enlander. Or other patients who lives outside of the US who has been to see him and could share your experience with me on how everything works.. Anyone here?


    I really appreciate any info you could share with me!


    Thank you!
     
  2. maryb

    maryb iherb code TAK122

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    Moaluv - one of the problems I could see is how would you get the necessary regular blood checks to make sure kidney, liver function etc are not being affected by the drugs/supplements? Would your GP be prepared to work with him on these. One of the problems we have in the UK is our GP's are not supportive in general if we receive treatment from another doctor, in fact mine are very abrupt, so much for respect and working together with others in the same profession.
    In the UK many NHS GP's seem to have a god like ego.
     
  3. paddygirl

    paddygirl Senior Member

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    Dr Enlander

    Maryb, Plenty of egos here in Ireland too.

    Moaluv, a friend at work has been considering going to Dr Enlander in NY, but I have heard he does travel sometimes to Belfast in Northern Ireland, where he comes from.
    Might be cheaper to see him there.

    There has been a lot happening recently in Sweden and Norway in ME research, maybe you have seen it?

    I think its Invest in ME and the Irish ME Trust that have part-funded work by Dr Jonas Blumberg. There is also a doctor in Lillehammer (?) in Norway, which I was told is just outside Oslo, her clinic has been co-operating with the WPI on recent research and have been successful in finding XMRV in their patients, who knows, maybe you could get into a research program.

    On re-reading I think I may have got that Norwegian town wrong, could it be Lillestrom? I could be inventing places for all I know. :D

    Good luck to you, we are all chasing the same dream.

    Paddy x
     
  4. ukxmrv

    ukxmrv Senior Member

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    Dr Enlander also visits the UK. He came to London earlier this year and I think he was also off to Ireland and Germany. Email his office and ask about new dates.

    I can't give you any prices sorry. Depends on what infections you have. He gives new patients some Hepapressin to inject and some of the other supplements he uses. That would give you the basics of his simple treatment. Email his office and ask what the monthly charges are for

    LECTROLYTE
    IMMUNOPROP
    IMMUNOPlus
    Hepapressin

    Valtrex and Valctye can be very expensive bit some people are using generics bought from abroad.

    http://www.enlander.com/treatment.html
     
  5. Moaluv

    Moaluv

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    Maryb; Thank you for your reply! Yes to be able to go through concierge treatment I need to have a doctor here in Sweden that oversees the treatment. Dr Enlander would then be in contact with both me and my Swedish doctor constantly (according to his medical assistant). I have an appointment with my family-doctor in two weeks so Im planning to talk to him about this then. He seems to be open-minded when it comes to CFS (and in general) so I think that he would at least consider it, given that theres no rules that prevents it.. Yea, the god-complex-syndrome goes for quite a few doctors here too and even though CFS is classified as a physical illness nowdays a lot of doctors still believe it to be a psychiatric condition.. So Im happy that Ive found this doctor even though he hasnt been able to help me that much so far.. There are quite a lot of regulations here and it takes a long time for treatments to become available, supposedly for safety reasons. (This can be a good thing at times but it can also make it difficult to get help in cases like these).


    Paddygirl; Thank you for your reply and the info! Yes Jonas Blomberg is a virologist who is studying the XMRV-virus at Uppsala University. I dont think that any treatment is available through him though. The last thing I heard from him, in an interview, was that he thought that a vaccine could be available in Sweden within 5-10 years.. But now that you mention him,,I might try to get hold of his email so that I could ask him about it and maybe get his opinion on dr Enlander too. There was a professor here, prof Gottfries, that came up with a vaccine some years ago that many patients benefited from but it was forbidden due to safety-reasons..

    Yes, Lillestrm is the name of the town in Norway!:DIm pretty sure the clinic youre referring to is "Lillestrm Helseklinikk -Center for treatment of chronic diseases". My mum was in contact with them a couple of weeks ago and the doctor she spoke too said that they had actually been visiting dr Enlanders office in NY to learn from him, she also said that the methods being used at dr Enlanders clinic were similar to the ones they used at Lillestrms (the norweigan clinic). But when I emailed dr Enlanders office his medical assistant said that she did not think that Lillestrms had enough experience in treating patients. She also said that their methods were not similar to dr Enlanders for an ex because the norweigan clinic used preservatives in their injections that a lot of patients had side effects to according to her. So that made me a bit unsure. Maybe Lillestrms is in a more experimental phase than I thought..

    If I am going to try a treatment option, collect money for it and etc, I feel that I want to go to the doctor with the most experience/knowledge and who has developed and perfected his/her methods over time.. But I ofcourse want him/her to be openminded when it comes to trying new treatment options as well.. Im not sure yet. Ill probably investigate the norweigan clinic a bit more. I feel that I want to go there to get checked for xmrv in any case, but thats a financial question.

    In Enlanders option I could do all of the bloodwork and examinations here in Sweden, if my family-doctor agrees or I find someone else who does, and then all of that would be for free (-which it wouldnt be in Norway as the clinic is private and Im not a citizen-) so Im not sure of if it would be more expensive to go via dr Enlander.. The cost might be about the same in both options at least the first year. Yea, I heard that dr Enlander goes back to Irland to treat patients sometimes..Im not sure if I would be able to travel to Ireland either considering how sick I am though..But I might look in to it a bit more..

    Whats your opinion on dr Enlanders treatment?


    Ukxmrv; I have been in contact with dr Enlanders office and I have asked how much treatment would cost approximately for the "average patient" but I havent had any answers to that specific question. But I will ask for the monthly costs of the supplements and etc that you listed here..Thank you for that! Would the supplements/medications that you listed here be what the average patient would need to take each month you think? Would I take both immunoprop and immunoplus or is it one or the other?
     
  6. ukxmrv

    ukxmrv Senior Member

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    Sounds like a good plan to me. The UK patient I know that saw him recently is taking all the supplements that I wrote down above at the same time. Too soon to know the result for her.
     
  7. paddygirl

    paddygirl Senior Member

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    Treatment

    Hi Moaluv,

    You have certainly done your research and seem nearer to making a decision than I am. I know that WPI have been putting their medical team together and its my hope that I'll be heading to Reno at some point.

    I asked Dr Mikovits at the NJ conference about the new clinic. She did say that they might use Skype to stay in touch with distant patients. I am lucky in that I can get to the U.S. for free, but my wage is at survival level and raising money will be the problem.

    I have pretty much given up doing the rounds of doctors as their minds are closed here and have been down that road with nothing to show for it.

    I haven't seen much mention of costs at WPI but I know that medical costs in the U.S. are staggering. My sister in NJ cut her finger with gardening shears and the 5 stitches she needed cost $2000 plus! It would have been cheaper to fly to Ireland to an ER, that cost is 100 eur.

    I have also asked the WPI about insurance, which I have in my workplace. Problem is, if the treatment is deemed 'experimental' that might not pass with the Insurance company.

    The issue too is whether the costs will be ongoing or will a lump sum payment be enough. I'm at an age where I have equity in my house and could release some, but then again I'm reaching the point where work is almost impossible and I'm just hanging on by a thread. Chicken or egg. :confused:

    The bottom line for me is that I trust the WPI implicitly, I know there are many excellent ME doctors out there but I want to go to the source. I read yesterday that WPI will have a neurologist on the team and I assume will cover other specialities too.

    Trying to figure this stuff out with my two remaining brain cells is a challenge, made worse by the fact that very few people around me know what I'm talking about.

    Wishing you the best.

    Paddy x
     
  8. Dolphin

    Dolphin Senior Member

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    A couple of years back the cost was US$320/month for the injections and various supplements.
     
  9. Nielk

    Nielk

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    I Have been a patient of Dr. Enlander's for seven years.
    I obviously hold him in great regard but, you should realize before embarking on this that not the biggest CFS specialist can cure anyone
    as of this date.
    Dr. Enlander claims a 60% rate of improvement with his protocol but, there are some patients who are not helped by it at all.
    This is no different then any of the other experts in the field.
    I would be weary to shell out a yearly fee in advance.
    Maybe you can do it on a monthly fee and see how you progress.
    As far as the fees, my insurance covered it so I can't help you with that.

    I wish you the best of luck in making the right decision for you.
     
  10. Moaluv

    Moaluv

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    Ukxmrv; Ok, thanks! I understand.. I’ve written to dr Enlanders office and the monthly cost for all of the supplements on your list (LECTROLYTE, IMMUNOPROP, IMMUNOPlus, Hepapressin) would be around 190 dollars a month. So if that’s what I have to expect in costs it definitely seems like one of the most affordable treatment options I’ve read about..


    Paddygirl; Yes, I’ve understood that healthcare can be very expensive in the US and that the insurance system can lead to a lot of work for the individual in trying to get their treatments and etc approved – 2000 dollars for 5 stitches seems really extreme! Everyone I’ve ever spoken to over here, probably because we’re used to something else, think that the system in the US with insurance and etc seems really odd. Free healthcare is seen as something very basic in general in Sweden. So yea it’s a completely different system here. All health-care is subsidized so it doesn’t cost anything for the individual to get stitches, surgery or whatever it is. You pay a small fee when you go to see a doctor but there’s a roof so you never have to pay more than 140 dollars a year no matter how many times you go see a doctor. After that all visits to any doctor/hospital or whatever is for free. For medication/medicines there’s also a roof so you never have to pay more than 320 dollars a year no matter how much medicine you need. But the treatment I need does not exist here and like I wrote in my earlier message the rules are quite strict in Sweden when it comes to certain areas, supposedly for safety reasons, so it a lot of times takes much longer for treatments to be approved here and a lot of the more controversial treatment options that are available outside of Sweden are not legal here. Meaning that I will have to pay for this myself anyway. The fact that a lot of doctors has seen this as a psychiatric condition has of course slowed things down quite a bit too.. I’m going to try to apply for money from private donors/organizations though..

    If my familydoctor agrees, or I find another doctor who does, I could get the bloodwork and examinations for free here though. That is if there’s no rules preventing him from doing this - based on the fact that they’re prescribed by a doctor who performs treatment that might not be legal here.. I’m going to see my familydoctor on the 8th of feb so I’ll talk to him about it then..

    Yea, I know..It’s really a bit of a catch 22-situation – it would be so much easier to investigate all of this if we would have had more energy/longer concentration spans.. Hope you’ll find something good and affordable soon!

    I haven’t heard of any treatment offered via WPI. You wrote that you were hoping to head towards Reno soon, is there a clinic there? I understand how you feel about “going to the source”. If they had accepted international patients and had a concierge-practice, were affordable and had worked out a program that had helped a lot of patients then I would look into it too.. I haven’t heard of any treatment options connected to them before..I have signed up to get there newsletter though! Anyhow, what I’m thinking in regards to this is that if for an ex WPI come up with something that helps a lot of patients dr Enlander and other experienced and openminded doctors would probably want to try those options too.. It seems like if he has a lot of contact with other researchers.
    Best of luck to you too!


    Dolphin; Ok, thank u! That’s a bit more than what I estimated based on one of the posts above. But I realize its different for each patient.. I was just trying to get an estimate. But maybe somewhere in the span from 150-400 is what an “average” patient would spend.. ( I have understood that it would be more expensive if I would need Valcyte or something like that).


    Nielk; Thank u for that! That’s a good point. I’ll ask if it would be possible to pay on a monthly basis instead. Yes, I’m aware of that there is no cure as of this date.. But I really feel that I need to try something proper now, as soon as I possibly can, as I’ve been inactive for so long now that my muscles and everything could be permanently affected and I’m still young enough to do something about that. There is no real medical treatment available in Sweden and I just heard about these options that dr Enlander and others provide 6 months ago.. I’m so sick that I haven’t been able to work or study for 5 years and can’t take care of myself or my home so just to get 50% better would be amazing – even though I of course hope that I will be able to recover fully at some point.
    I feel that a 65% succesrate, 65 is the number I got from his medical assistant, means that I have a good chance. How much have you improved since you started going to dr Enlander? How does the injection-part work? Is it easy to learn and do at home? Does patients usually have to take those injections for life (or til something better comes up) or can they be substituted after a while?
     
  11. Dolphin

    Dolphin Senior Member

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    US$320/month was for:
    plus sublingual B12
    as I recall.
     
  12. Nielk

    Nielk

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    Moaluv,

    I believe that Dr. Enlander has done whatever he can to improve my condition. To be fair, the first time I came to him, he told me that my chances are slim for improvement. The reason being that by the time I got to him I was already sick for a very long time and also because of my age. My improvement has been
    very small and erratic but you shouldn't really judge by me. Your situation is different. You are young and that's a big advantage for you. I always see other
    patients in his waiting room and they say that they have been helped a lot. The procedure of giving yourself shots is easy. (it was easy for me and I gave it to myself twice weekly) If you can't do it yourself than maybe a family member can help. Your question about for long you would need to take it is a good question which you might want to ask them. My observation would be that if it helps you, you would need to continue until a real cure becomes available but, I might be wrong.
    Best of luck,
    Nielk
     
  13. Recovery Soon

    Recovery Soon Senior Member

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    This price range sounds about right. Depending on your insurance the Hepappressin shots could be cheaper which would bring that figure down.

    I've been a patient of Dr. Enlander for 4 plus years. I think he is a fantastic Doctor and a great human being, but I have not seen any noticeable improvement on his protocol- so I would personally NOT recommend spending $5000 for some sort of treatment program.

    I think until there is some sort of scientific breakthrough (with consensus) that the best path is
    -1) finding a Doctor to rule out all other possibilities until you are confident in your CFS diagnosis.
    2) Research all supplements that are helpful for CFS and begin your own protocol.
    3) Modify your lifestyle to lower stress as much as possible and increase happiness (my personal suggestion is mindfulness meditation).

    Even great Doctors like Dr. Enlander can't really significantly change your condition yet- certainly not to the tune of $5K. While it is sad and frustrating, the best short term plan is probably to be practical and economic.

    If he was curing people I'd say go for it. But I'm in that office A LOT- and that isn't happening.

    Good luck.
     
  14. undcvr

    undcvr Senior Member

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    Hi Moaluv, I am in NYC and Enlander is one of the 2 higher profile doctors that treat cfs in the NYC area. The other is Susan Levine. Btw the 2 of them Levine is cheaper. Both of them have been treating PWC for many years. You might want to look into Susan Levine as well.
    The problem with cfs and doctors that treat them is that while you pay them money to see them, you have to educate them as to your specific case as well. It can be frustrating and time consuming.

    Can you even get a basic battery of viral tests while you are still there in Sweden ? That will help you out alot.
     
  15. Moaluv

    Moaluv

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    Nielk; That sounds good. I thought it sounded like quite a big project when I first heard that I needed to take injections myself. But maybe it’s a bit similar to what diabetes patients do, and that seems to work well for most people. I’m happy to hear the good things you have to say about dr Enlander and what you’ve heard from other patients. I really hope you will find something that works for you soon!


    Dolphin; Ah, ok! When I asked dr Enlanders medical assistant about the montly cost for LECTROLYTE, IMMUNOPROP, IMMUNOPlus and Hepapressin that was 190 dollars a month. Maybe the sublingual b-12 is quite expensive – or maybe some patients need to take larger amounts of each supplement than others..


    Recovery Soon; Thank you! As I’m Swedish and we don’t have the insurance system here (- all healthcare is basically free but there is no real medical treatment option available for CFS here-) I would have to pay full price for supplements/medicines and etc.

    It’s 5000 dollars the first year and then 3000 dollars for the subsequent years. It is a lot of money but if I would get better then it would of course be more than worth it. According to dr Enlanders medical assistant, and the articles I’ve read, 65% of dr Enlanders patients have been able to recover through his protocol (mainly through the injections as I understood it). So I realize that there is a 35% risk, or it could be a bit lower considering that I’m quite young (28), that I would not be helped by it. But I think that these numbers means that I have a good chance. I have heard from patients that have become much better through his protocol/treatment as well. I think that it’s easier to find people that have not been helped in cfs-chatrooms and etc though as people that have become well/much better don’t at all have the same tendency to be active in this type of forums.

    I feel that I want to try a full protocol with an experienced doctor, who has had good results, as I have not tried that option before.( The few cfs-doctors we have here are not allowed to do much the way it is now). There are so many supplements that people recommend and I went to an alternative therapist that prescribed lots of different ones for 2 years without me getting any better so I feel that I need to try something else, a fully worked out program in which there is possibilities to try stronger medicines as well. I eat very healthy and has taken care of all those basic, I’m also very positive as a person even though it’s of course hard to be this sick and not being able to take care of myself.

    I will ask if I can pay per month (instead of 5000 up front) in case I feel after a while that it’s not the right treatment option for me. I understand how you feel and I appreciate your advice. I think it’s important to be critical before embarking something like this and I’m trying to get hold of as many opinions (from other doctors as well) as I can about this but I feel that I need to start something soon with a doctor who really understands this condition. I’m too sick to take responsibility for all of this myself. I have done that for too long and I really feel that I need to do something a bit more drastic now and feel optimistic about this option.. I will investigate it a bit more though..

    Yes I agree,ruling out other conditions is really important. I feel that I want to have more tests done. It seems like if that’s one of the purposes with dr Enlanders list of examinations/bloodtest - to rule out other possible conditions..


    Undcvr; Thank’s! Yes, I’ve heard of dr Levine too. As I understood it she doesn’t have a worked out program for international patients though.. Hmm, I think that a basic viral battery test is part of the tests on dr Enlanders list – meaning the tests that needs to be taken before I can start treatment via him. I will ask my familydoctor when I see him next if I could do all of those tests through him.. What does a basic battery viraltest mean? Which bloodtests are included in that?
     
  16. paddygirl

    paddygirl Senior Member

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    WPI Clinic

    Hi Moaluv,

    I had a skip in my step yesterday when I read the latest blogs from Dr jaime Deckoff-Jones. I can't remember the exact web address but it's called treating xmrv I believe. You can find them on the xmrv.org facebook page. You may have to scroll down a bit.

    Dr Deckoff-Jones is a patient as is her young daughter and has been taking anti retrovirals for a few months with some success. She has been made clinical Director of WPI. Her two latest blogs talk about this, and WPI's plans for the clinic in some detail. There are many letters from readers which address, as you can imagine, peoples wishes and fears about treatment. The principal fear for most people is money or lack of it and which kind of insurance will be accepted.

    Many people are in Medicare or similar programs which are, I believe, for retired or people on benefits or low wages. I might be wrong here but that is how it was explained by an American friend. For the moment WPI cannot accept these programs.

    Some discussion about foreign or housebound patients is in the blog too if you have a look. WPI are very aware of peoples desperation and that many patients have been left struggling financially by this illness. Dr Deckoff-Jones says that treatment will not be exorbitant.

    As I mentioned earlier, I have workplace insurance but don't know if they will cover any treatment, I will certainly try to get them to though, as treatment is less than zero here, with the only options being stupifying painkillers and anti-depressants.:eek: The details of the small print will be the decider, but basically I have been told that if treatment is not available for me in this country then I have a right to seek it elsewhere.

    I had a look at the WPI site but there is nothing there about these developments.

    Anyway, I'm still skipping, I don't think there has been one day in the many years of being ill where I accepted that this is for life. Despite the sage words of my Rheumotologist, 'You won't die of it, but you will have it for life' How I would like to prove him wrong!

    Paddy x
     
  17. Dolphin

    Dolphin Senior Member

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    Thanks for message.
    Spray is $20.

    Apart from Hepapressin, they are all for sale at:
    http://www.immunoprop.com/
    Immunoprop $36
    ImmunoPlus $36
    Lectrolyle $7
    BetaMax Spray $20.

    Then the Hepapression injections were $50 each, 4 for $200. Which brings to $319 (maybe Lectrolyte was $8 before?).

    Anyone know what the breakdown in the prices might be now to make it $190. Maybe he is offering them now at a reduced price or telling people to take less?

    I didn't see any recovery stories here. Although an awful lot of people seemed to stop pretty quick e.g. within a month or two (mainly due to money I think).
     
  18. Moaluv

    Moaluv

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    Paddygirl; Hi paddy! I will look at that webpage. Sounds interesting. Thank’s! It sounds good that dr decoff-jones says the cost will not be exorbitant (-that was a new word for me, just looked it up, I’m learning a lot of new words here:)-). Ah, ok..It does sound like if it would be possible for you to get treatment through your insurance then..If it says that you can seek treatment outside of the UK if it’s not available within. It doesn’t seem to work like that here if the treatment is not approved within Sweden, it might not be considered “scientific” enough…

    I have never accepted this to be for life either,,Whatever age I’m in I have always been thinking that I will get better within these next few years.. I still think like that, that I will find something pretty soon that will work. I haven’t been very sick for more than 5 years either, not that that’s a short amount of time but it’s not too long ago that I was able to both work and study and I still feel like if I’m just in this situation on a temporary basis..Are you well enough to work? X



    Dolphin; Hi Dolphin! When I emailed dr Enlanders medical assistant she told me that the cost of the heprassin injections were 25 dollars each so they’re apperently much cheaper now..! Then hopefully my costs would be closer to 200 than 350/month..

    I have read about people getting much better through this treatment at some pages that I’ve looked at before. Some short stories at prohealth message board and a couple on a “grade your doctor”-page. But if dr Enlanders numbers (65% succesrate) is accurate, and I think it would have been discovered if these numbers weren’t accurate (– or what do you think?), it seems like if a lot of stories doesn’t reach these messageboards/forums.. I think that those of us that haven’t been helped by the treatments we’ve tried are much more likely to join forums and be active online, in our search for something helpful... If I get better I’m gonna keep that in mind and remember to write about what have helped me in a couple of different forums – I wasn’t really aware of that these forums existed until a couple of months ago..

    I also found (when I looked at another page), just like you said, that quite a lot of people that haven’t been helped seem to have stopped their treatment after just a couple of months – a lot of times due to lack of money. And it seems like if it takes quite a lot of time, after starting treatment, before the improvement starts to occur in some cases..

    Hmm, one thing that I find hard to understand is why these treatments haven’t spread more if they are safe and have generated quite good results..

    I’ve been trying to find scandinavian patients that is seeing dr Enlander but haven’t found anyone so far. Maybe I could get hold of someone through his medical assistant..I’m thinking that she could email some of their scandinavian patients, give them my email address and ask them to write to me if they want to…. Maybe that would be the best way to get hold of someone...

    Did you use to go to dr Enlander? Thank’s!
     
  19. Dolphin

    Dolphin Senior Member

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    V. interesting about the price.

    We tried to do a survey of people who had tried the treatment in the Rep. of Ireland but only a few replied. But I think I would most likely have heard about good success stories in the Rep. of Ireland. But sample size would be small of people who didn't stop after a month or two.
     
  20. Moaluv

    Moaluv

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    Dolphin; Yes, it is interesting and of course really good news that its so much cheaper now. I emailed dr Enlanders assistant before I had seen your message in which you wrote that the heprassin shots were 50 dollar each, and asked her if I could estimate treatment costs to 200-400 a month and she replied that that estimate was exagerated. The standard protocol is 190 dollar a month.. All the prices you wrote down is the same except for the heprassin. If the patient needs valcyte or something like that it would be 2000 dollars a month but as I understood it this is more of a last resort..and is something that I hope I wont need and would give a lot of thought before trying..

    That is interesting that so many people seem to stop treatment after 1-2 months.. Because I suppose that doctors inform their patients before they start treatment that it a lot of times, for most patients?, takes longer than that to get effects from it.. Some people might start treatments that they cant really afford hoping that they will be one of those patients that will get effects from it immidiately and then when they dont get that they feel they cant take the risk of putting more money in to something that might not work.. I dont know..
     

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