Thanks for the feedback. Regarding stopping after a month or two: the Irish group may not be representative of everyone - they might not have known the costs or put much thought into it before attending. The main motivation for some of them might simply have been to be seen by a specialist.
Dr Enlander, treatment costs?? + Scandinavian/European patients?
- Thread starter Moaluv
- Start date
hello Moaluv
I am also in sweden with CFS, (27 Uppsala) most swedish doctors are so far behind that it is a struggle to get a diagnosis and now that i have one they simply suggest someone to talk to or some physical therapy, well well, i am going to go to the norwegian clinic and get tested for XRMV, just to see,
I have also heard of the clinic in malm ( gottfies?) but i am not sure if they can do anything more that set a dignosis or give b12 injections, both not so exciting...
where in sweden are you?
I am also in sweden with CFS, (27 Uppsala) most swedish doctors are so far behind that it is a struggle to get a diagnosis and now that i have one they simply suggest someone to talk to or some physical therapy, well well, i am going to go to the norwegian clinic and get tested for XRMV, just to see,
I have also heard of the clinic in malm ( gottfies?) but i am not sure if they can do anything more that set a dignosis or give b12 injections, both not so exciting...
where in sweden are you?
Dolphin; Aha I understand..Thats how I was thinking when I contacted the first cfs-expert I went to see. I knew that he didnt have any treatment options to offer but I needed to get diagnosed and hadnt found anyone who had enough knowledge about this illness (-or I hadnt found anyone else that knew anything about it really-) up till then..
I might add here that I take hydrocortisone and levaxin (the equivalent to synthroid) since 1,5 years and 6 months back, respectively. It seems like if I have an underfunctioning thyroid as well. I know that this is common for people with CFS.. To either have hypothyroidism + CFS or to be misdiagnosed with CFS when they in fact have hypothyroidism and nothing else Ive heard of quite a few cases of like that.. Im a little bit better , very small difference but still distinct, since I started this medication program but Im going to increase the levaxin (eq to synthroid) dosage during these next few months so hoping I will see more effects from it in a bit..
Alexa; h, hello! Youre the first Swedish person Ive come across in one of these american/english forums
For how long have you had cfs? Yea I know, the medical community is very much behind in general when it comes to this,, Its absurd how concervative and closeminded some doctors are..Lots of room for improvement to put it mildly
Im in Lund. And I think the clinic youre reffering to is Gottfries kliniken which is in Mlndal close to Gothenborg (Gteborg) so its not in Malmoe (Malm).. Ive emailed prof. Gottfries and maybe youve heard of the vaccine he used to give to patients before? Anyhow thats forbidden now so yea it seems like if all theyre allowed to do is to give b-12 injections and sleepmedicine and that sort of things. There are some other possibilities with kutapressin that the norweigan clinic offers, Lillestrms- I suppose thats the one youre planning to go to?, but prof Gottfries feel that there is not enough scientific evidence for the usage of this so theyre not interested in using it the way it is now..
I quite recently started taking thyroid medication (skldkrtelmedicin) so I think I need to wait for a while and evaluate the effect of this before I embark on something new..We have been planning to go to the Norweigan clinic this summer too.. but then I emailed a doctor in NY (dr Enlander that I write about in my earlier messages here) and asked about this norweigan clinic as the staff from this clinic had been visiting dr Enlander in New York to learn from him. And dr Enlanders medical assistant answered that she did not think that the staff at the norweigan clinic had enough experience to treat CFS patients. She also said that the kutapressin-injections they use in Norway had a preservative in it that a lot of patients cannot tolerate.. So that made me a bit unsure. But I talked to my mum yesterday and as the norweigan clinic seems open towards cooperating with international doctors and they seem very openminded in general if I tell them that I want to try some treatments that are not yet available at their clinic maybe that can be fixed anyway.. And I of course cant just listen to what the medical assistan at dr Enlanders office has to say about the norweigan clinic, theres obviously usually two (or more) sides to a story.. I will investigate it all a bit more..
When are you planning to go to Norway? Do you know anything about how much treatment would cost for the average patient at Lillestrms (if that is the clinic youre planning to go to)?
I might add here that I take hydrocortisone and levaxin (the equivalent to synthroid) since 1,5 years and 6 months back, respectively. It seems like if I have an underfunctioning thyroid as well. I know that this is common for people with CFS.. To either have hypothyroidism + CFS or to be misdiagnosed with CFS when they in fact have hypothyroidism and nothing else Ive heard of quite a few cases of like that.. Im a little bit better , very small difference but still distinct, since I started this medication program but Im going to increase the levaxin (eq to synthroid) dosage during these next few months so hoping I will see more effects from it in a bit..
Alexa; h, hello! Youre the first Swedish person Ive come across in one of these american/english forums
For how long have you had cfs? Yea I know, the medical community is very much behind in general when it comes to this,, Its absurd how concervative and closeminded some doctors are..Lots of room for improvement to put it mildlyIm in Lund. And I think the clinic youre reffering to is Gottfries kliniken which is in Mlndal close to Gothenborg (Gteborg) so its not in Malmoe (Malm).. Ive emailed prof. Gottfries and maybe youve heard of the vaccine he used to give to patients before? Anyhow thats forbidden now so yea it seems like if all theyre allowed to do is to give b-12 injections and sleepmedicine and that sort of things. There are some other possibilities with kutapressin that the norweigan clinic offers, Lillestrms- I suppose thats the one youre planning to go to?, but prof Gottfries feel that there is not enough scientific evidence for the usage of this so theyre not interested in using it the way it is now..
I quite recently started taking thyroid medication (skldkrtelmedicin) so I think I need to wait for a while and evaluate the effect of this before I embark on something new..We have been planning to go to the Norweigan clinic this summer too.. but then I emailed a doctor in NY (dr Enlander that I write about in my earlier messages here) and asked about this norweigan clinic as the staff from this clinic had been visiting dr Enlander in New York to learn from him. And dr Enlanders medical assistant answered that she did not think that the staff at the norweigan clinic had enough experience to treat CFS patients. She also said that the kutapressin-injections they use in Norway had a preservative in it that a lot of patients cannot tolerate.. So that made me a bit unsure. But I talked to my mum yesterday and as the norweigan clinic seems open towards cooperating with international doctors and they seem very openminded in general if I tell them that I want to try some treatments that are not yet available at their clinic maybe that can be fixed anyway.. And I of course cant just listen to what the medical assistan at dr Enlanders office has to say about the norweigan clinic, theres obviously usually two (or more) sides to a story.. I will investigate it all a bit more..
When are you planning to go to Norway? Do you know anything about how much treatment would cost for the average patient at Lillestrms (if that is the clinic youre planning to go to)?
Chris
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Hi; just looked up the list of things that are used. Don't know a great deal about Hepopressin (similar to Kutapressin, I gather), but the other things look as if one could use more familiar substitutes for oneself.
Immunoprop has Immunocal listed as as substitute, and is basically similar to a good high-alpha whey--with a bit of selenium and vit. C added, as well as glutathione, which may or may not be useful. One can raise glutathione by taking N acetyl-cysteine, a good whey, and curcumin.
Immunoplus looks like a version of our now old friend the B vits that start methylation going again (we hope...); check out the huge threads on that on this forum and elsewhere, or look up Rich van Konynenburg, who has done most to spread this therapy.
Antivirals are of course another story--they need a good doctor to consult with and do the necessary checks on a regular basis.
Best, Chris
Immunoprop has Immunocal listed as as substitute, and is basically similar to a good high-alpha whey--with a bit of selenium and vit. C added, as well as glutathione, which may or may not be useful. One can raise glutathione by taking N acetyl-cysteine, a good whey, and curcumin.
Immunoplus looks like a version of our now old friend the B vits that start methylation going again (we hope...); check out the huge threads on that on this forum and elsewhere, or look up Rich van Konynenburg, who has done most to spread this therapy.
Antivirals are of course another story--they need a good doctor to consult with and do the necessary checks on a regular basis.
Best, Chris
Chris; Hi! Heprassin is a generic form of kutapressin (, meaning that its a copy of kutapressin as I understood it,) which makes it much cheaper. And according to dr Enlanders medical assistant he has developed these injections for several years trying to make them as effective as possible and without side-effects. She didnt seem that positive to kutapressin in general. On the website dr Enlander writes that kutapressin by itself is rarely effective, its the specific mixture in the injections he has developed that makes it effective according to him.
Thank u for the input! I will look into it. I feel that I dont want to be in charge of this myself anymore though..I feel that it would be best to have an experienced doctor in charge who knows which tests to take and base medication and etc on testresults, plus symptoms, and the experience she/he has had instead of me trying to figure out what is going to work, what I should try, what works together and how much of each substance etc.. Especially considering that each patient can be quite different from the other... I feel that I want to try a full protocol as I have been trying to help myself for too long and Im too sick to continue like this.. Im not quite sure now after talking to my mum which clinic I should choose though, Lillestrm or Enlanders..
Thank u for the input! I will look into it. I feel that I dont want to be in charge of this myself anymore though..I feel that it would be best to have an experienced doctor in charge who knows which tests to take and base medication and etc on testresults, plus symptoms, and the experience she/he has had instead of me trying to figure out what is going to work, what I should try, what works together and how much of each substance etc.. Especially considering that each patient can be quite different from the other... I feel that I want to try a full protocol as I have been trying to help myself for too long and Im too sick to continue like this.. Im not quite sure now after talking to my mum which clinic I should choose though, Lillestrm or Enlanders..
Chris
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- Victoria, BC
Hi, Moaluv; I agree that it would be much better to be under the care of a doc who knew what s/he was doing--I wish you luck. I just don't have that option at the moment, but trying to take care of oneself does become tiring and frustrating. Let us know how you do! Best, Chris
Hi Chris! I understand..Hope youll find something that really works for you soon! I dont have the money myself for treatment but my mum can borrow from a relative that we have good relationship to. We have decided that this is the best way to go, now that we have this option, considering how sick I am. (Would have done it earlier if I had been aware of that these types of treatment existed..). Hopefully we can all get proper affordable treatment soon considering the xmrv-studies and etc..Yes, I will make sure to post here when Ive started some form of treatment! All the best, M