Looking for doctor/clinic recommendation in Europe (im from the UK)

[Guwop2]

Hello, ive recently had a very nasty relapse and need some support. I tried LDN and it basically shorted any progress id ever made. I'm on some tradiditional chinese medicine which makes some of the pain go away, but I walk around in a daze all the time and im sinking into a depression and am scared to come of this powerful TCM stuff.

I read this recovery article here from Healthrising on 'Adam' who went into remission by taking the BCG vaccination, and he mentions a CFS clinic in Brussels. In the UK I saw CFS doctor Amolak Bansal some years ago, who was very limited in the help he could offer, and am now thinking of trying someone who will be more involved with the treatments, thinking outside the box etc (the fact the chinese medicine works in some aspect, but not other, could be a starting point).

Are there any doctors or treatment centers that might consider in the EU?

 

[crussher]

If you are interested in HELP apheresis, here is a list of all EU clinics
https://lcacommunity.org/clinics-list

 

[Guwop2]

If you are interested in HELP apheresis, here is a list of all EU clinics
https://lcacommunity.org/clinics-list

thank you.

 

[Guwop2]

If you are interested in HELP apheresis, here is a list of all EU clinics
https://lcacommunity.org/clinics-list

Have you personally tried this 'H.E.L.P apheresis'? - it's a lot of money to spend and I wonder if anyone with ME/CFS has been through this already

 

[crussher]

I am actually in Germany right now for it! I am in Bayreuth. I had my 2nd treatment last week. My body feels lighter and I can get around the town more easily and up stairs. My breathlessness is greatly reduced and I feel like my lungs have been relieved of a lot of pressure. The doctor tells me most need 4-5 sessions to remove all the microclots and return the blood to normal circulation. I hope to do a bigger write-up once I am all done (I plan to have 2-4 more sessions) but feel free to ask me any other questions. There is the 'Long Covid Apheresis Association' on FB where you can find other testimonials.

 

[Guwop2]

I am actually in Germany right now for it! I am in Bayreuth. I had my 2nd treatment last week. My body feels lighter and I can get around the town more easily and up stairs. My breathlessness is greatly reduced and I feel like my lungs have been relieved of a lot of pressure. The doctor tells me most need 4-5 sessions to remove all the microclots and return the blood to normal circulation. I hope to do a bigger write-up once I am all done (I plan to have 2-4 more sessions) but feel free to ask me any other questions. There is the 'Long Covid Apheresis Association' on FB where you can find other testimonials.

Ah thank you for this, it;s great that it seems to be working for you. I take you have long-covid and were healthy prior to getting it? Also, were you ok receiving the vaccines?

 

[crussher]

Ah thank you for this, it;s great that it seems to be working for you. I take you have long-covid and were healthy prior to getting it? Also, were you ok receiving the vaccines?

You are very wecome. Have had ME for 5 years. I did not get the vaccines.

 

[Guwop2]

hi @crussher , I just had a telephone introductory call with the Cyprus branch. An odd guy called me (a former patient who was now working for them pro-bono, or something) and gave me the info. I asked if I could speak to a doctor to get a bit more information about the processes and specific treatments, but he said that was out of the question as the doctors are too busy (more or less his exact words). Perhaps these apheresis machines work for some people, but without getting a feel for the services they offer from an actual doctor it all feels a bit wild west. The main doctor overseeing the work is anti-aging specialist Dr Irina Pavlik Marangos. How was your consulatation with them, did you ever get to speak to a doctor prior the treatment?

 

[crussher]

hi @crussher , I just had a telephone introductory call with the Cyprus branch. An odd guy called me (a former patient who was now working for them pro-bono, or something) and gave me the info. I asked if I could speak to a doctor to get a bit more information about the processes and specific treatments, but he said that was out of the question as the doctors are too busy (more or less his exact words). Perhaps these apheresis machines work for some people, but without getting a feel for the services they offer from an actual doctor it all feels a bit wild west. The main doctor overseeing the work is anti-aging specialist Dr Irina Pavlik Marangos. How was your consulatation with them, did you ever get to speak to a doctor prior the treatment?

Hi again. In my opinion, the cyprus clinic is wild west, for sure. Firstly, Cyprus itself tends to allow all kinds of medical treatments without much legal oversight. Secondly, there have been variable reports of patient care from the Cyprus clinc, some shocking. That's not to say others are not being helped by their treatment, but you want to be in good hands if things go wrong. That's why I wanted to come to a German clinic myself where the professional standards are as you would expect. My treating doctor here in Bayreuth, Dr Satanovskij, answered many questions via email prior to my coming and also I had a pre-consultation meeting with him. He also offered to zoom with me prior to coming.
NB> The LCA FB group has a strong bias towards the Cyprus clinic. It may even be run by that clinic, I'm not sure.
Regarding efficacy and longer-term results, I believe a proper paper is coming. At the moment, one relies on anecdotes. My doctor here tells me that, from 2 years of overseeing treatments, 80% of patients experience improvement, but I don't know to what degree. I have read a similar stat online but which divided into: 20% big improvemet/recovery, 60% improvement to varying degrees, 20% no improvement (of which a small amount worsened).
Here is a reputable paper on the procedure for Long Covid https://pubmed.ncbi.nlm.nih.gov/36304538/
The good thing about the treatment is that you know if you need it or not and when to stop. This is because you see the microclots in the filter post-treatment. If you have loads of them, then the treatment should help. Also, when full of microclots, the blood turns black (essentially). The natural end point of the treatment is red blood and no clots post-treatment. THen the circulation has been 'reset'.
Any other questions, let me know.

 

[Guwop2]

Hi again. In my opinion, the cyprus clinic is wild west, for sure. Firstly, Cyprus itself tends to allow all kinds of medical treatments without much legal oversight. Secondly, there have been variable reports of patient care from the Cyprus clinc, some shocking. That's not to say others are not being helped by their treatment, but you want to be in good hands if things go wrong. That's why I wanted to come to a German clinic myself where the professional standards are as you would expect. My treating doctor here in Bayreuth, Dr Satanovskij, answered many questions via email prior to my coming and also I had a pre-consultation meeting with him. He also offered to zoom with me prior to coming.
NB> The LCA FB group has a strong bias towards the Cyprus clinic. It may even be run by that clinic, I'm not sure.
Regarding efficacy and longer-term results, I believe a proper paper is coming. At the moment, one relies on anecdotes. My doctor here tells me that, from 2 years of overseeing treatments, 80% of patients experience improvement, but I don't know to what degree. I have read a similar stat online but which divided into: 20% big improvemet/recovery, 60% improvement to varying degrees, 20% no improvement (of which a small amount worsened).
Here is a reputable paper on the procedure for Long Covid https://pubmed.ncbi.nlm.nih.gov/36304538/
The good thing about the treatment is that you know if you need it or not and when to stop. This is because you see the microclots in the filter post-treatment. If you have loads of them, then the treatment should help. Also, when full of microclots, the blood turns black (essentially). The natural end point of the treatment is red blood and no clots post-treatment. THen the circulation has been 'reset'.
Any other questions, let me know.

I dont expect luxury, but as this illness progresses patient care and professional competance is just so important. I did the cowboy thing alone with LDN and have done some serious damage.

I would try these blood cleaning machines, but im also after a doctor who can guide me a little in future treatments. These clinics emphasise long-covid and the cyprus clinic just felt like a gaggle of people who pivotted to LC, and who would be prepared to take on ME patients because 'it's basically the same illness', or something to that effect; did Dr Satanovskij seem to have good experience in dealing with M.E? I ask, because they advertise 'combination therapy', which I gather means treatment with anti-virals and other measures, which many with M.E have benefited from. A competant M.E doc could support attempts at using them.

 

[crussher]

PS: If your ESR rate is very low, it can also be a sign of microclots at high level.
Also, Dr. Asad Khan, a LC patient himself, had apheresis. Loads of things on YouTube and in the podcast sphere by him, worth checking out

 

[Guwop2]

PS: If your ESR rate is very low, it can also be a sign of microclots at high level.
Also, Dr. Asad Khan, a LC patient himself, had apheresis. Loads of things on YouTube and in the podcast sphere by him, worth checking out

what is a good test to measure ESR rate?

 

[crussher]

I dont expect luxury, but as this illness progresses patient care and professional competance is just so important. I did the cowboy thing alone with LDN and have done some serious damage.

I would try these blood cleaning machines, but im also after a doctor who can guide me a little in future treatments. These clinics emphasise long-covid and the cyprus clinic just felt like a gaggle of people who pivotted to LC, and who would be prepared to take on ME patients because 'it's basically the same illness', or something to that effect; did Dr Satanovskij seem to have good experience in dealing with M.E? I ask, because they advertise 'combination therapy', which I gather means treatment with anti-virals and other measures, which many with M.E have benefited from. A competant M.E doc could support attempts at using them.

You are very welcome. I wouldn't say that Dr. Satanovskij is your man, or likely any of the HELP apheresis doctors, for a range of other ME related treatments. He is a kidney specialist. Him and others offering HELP are generally people with other specialisms who happen to have learnt how to use HELP for LC/ME patients and who are up to speed on the microclots idea.

They may also know about autoimmune markers, such as Beta 2 adrenergic autoantibodies, and offer immunoadsorption for this. That is the case here in Bayreuth - they can test for them and offer the treatment. These autoantibodies have featured a lot in the work of Prof Scheibenbogen and may be impacting the heart and vascular systems in ME. Immunoadsorption costs an arm and a leg though - 4 sessions are recommended to the tune of 10,000 Euro altogether.

Triple therapy actually refers to the use of anticoagulants to clear the body's production of microclots and not to antivirals. Here is a paper on that: https://europepmc.org/article/PPR/PPR436609

Great results there but requires a constant supervision because of bleeding risk. I don't know if Satanovskij offers this - it is not really his area. He has only discussed HELP, immuno-adsorption and Rituximab with me.

So really, the HELP-related centres will know about a few aspects of ME/CFS but they won't know much about the illness in general.

 

[crussher]

what is a good test to measure ESR rate?

The test is simply called 'ESR rate' (Erythrocyte Sedimentation Rate) and should be part of regular blood work with a GP or easily ordered via a GP. The more microclotted the blood, the thicker it is, the more resistant it is to settling down. The lower the ESR rate, the longer the blood takes to settle down. Mine was 1, the lowest possible. I wrote to Prof Kell abou this (he studies microlots) and he confimed that low ESR rate = loads of microclots. But your GP won't think there is anything unusual or concerning in a low ESR rate.

 

[Guwop2]

The test is simply called 'ESR rate' (Erythrocyte Sedimentation Rate) and should be part of regular blood work with a GP or easily ordered via a GP. The more microclotted the blood, the thicker it is, the more resistant it is to settling down. The lower the ESR rate, the longer the blood takes to settle down. Mine was 1, the lowest possible. I wrote to Prof Kell abou this (he studies microlots) and he confimed that low ESR rate = loads of microclots. But your GP won't think there is anything unusual or concerning in a low ESR rate.

Im speaking to my GP here in the UK tomorrow, i hope I can convince them to give me this test and ive been looking up various health conditions where taking this test is required..still not sure whether I should lie or explain what I need the test for. thanks again, i will keep an eye out for your write up on this, I hope you continue to improve!

 

[crussher]

Im speaking to my GP here in the UK tomorrow, i hope I can convince them to give me this test and ive been looking up various health conditions where taking this test is required..still not sure whether I should lie or explain what I need the test for. thanks again, i will keep an eye out for your write up on this, I hope you continue to improve!

Ah sure, I know! It's hard to know when to tell the truth, lies or white lies when dealing with the medical profession. If you want to go down the truth route, Cort Johnson has a helpful write-up of some ESR related ME/CFS research here: https://www.healthrising.org/blog/2019/11/06/clumper-slider-esr-chronic-fatigue-fibromyalgia-poll/
Thanks for the kind wishes for my health. FIngers crossed it continues to go well for me.

 

[Guwop2]

Hello again, I'm considering getting in touch with Dr. Satanovskij. In curious how you came to select him over the other places that offer apheresis. Was the price competitive? The cyprus treatment center seems the cheapest, but I'm not going there for the reasons we've discussed.. basically just trying to work out which would be the least expensive, but decent, mainland western Europe apheresis centre

 

[crussher]

Hi again, that’s great to hear!

Basically, I wrote to all the German clinics asking them if they see ME as well as LC patients. I didn’t hear back from most. A couple wrote saying they only see LC patients (totally silly situation). But Dr. S wrote saying that he sees both as the illnesses appear to be essentially the same. As he had availability shortly, that made the decision for me. (As you will see on the list, it says Dr S is at Lorrach, but actually he has moved to Bayreuth since the beginning of the year).

I should mention that here in Bayreuth (and all German clinics that offer HELP apheresis bar one, as I shall describe shortly) the clinic is primarily a dialysis centre. It only has one apheresis machine and therefore they have only around 6-8 available slots per week.

The head apheresis nurse here speaks decent enough English – sometimes we have had to use google translate but basically it is fine. Dr S speaks near impeccable English. He defines the protocol for each treatment but may or may not be present for it as he travels around other dialysis centres in the region. But there is always a doctor on site familiar with HELP apheresis. I’d also say Dr. S is highly courteous and has a nice manner.

As I mentioned, there is one exception to the general situation in Germany. Dr Jaeger, who used to have a clinic in Mulheim which recently closed, is opening a new one in Bad Aibling which, if I understand correctly, will have very high apheresis capacities and be basically fully dedicated to LC/ME. However, her Mulheim clinic had closed their waiting list at 8,000 patients and one assumes they will be carried over.

The cost here in Bayreuth is as cheap as possible – 1400 Euro per treatment. The filter costs the clinic 1000 Euro and so when you factor in the nursing and doctor costs, it is as low as possible.

3-5 treatments is the norm, according to the nurse, but if someone is wheelchair-bound she says 8 treatments is more typical.



There is also the Swiss clinic in Zurich which I think is more geared towards being an apheresis clinic but I believe the treatments there are the most expensive of all.



Any other questions, let me know. If you get here before mid-July, we could meet for a tea! Patrick

PS: I may take 24 hours to respond at the moment.