CFS is getting on my....

[yabeeb]

Mine was about 3,500 euros I think. But you can make it clear that you have a budget that you need to stay within, and just get the testing you can afford.

Cool thanks. Did it help you ?

 

[Valentijn]

Cool thanks. Did it help you ?

Yeah, I got diagnosed with active Lyme and Yersinia infections. There were also some markers indicating a lot of inflammation as well, and a CPET documenting definite disability.

I've been taking 4ME and B12 injections, plus probiotics and digestive enzymes for about 5 weeks. In a few weeks I should be starting multiple IV antibiotics, which will last at least 3 months, depending on how I respond to them.

 

[yabeeb]

Yeah, I got diagnosed with active Lyme and Yersinia infections. There were also some markers indicating a lot of inflammation as well, and a CPET documenting definite disability.

I've been taking 4ME and B12 injections, plus probiotics and digestive enzymes for about 5 weeks. In a few weeks I should be starting multiple IV antibiotics, which will last at least 3 months, depending on how I respond to them.

That sounds good.... I wonder why i hate resting so much?!

 

[Valentijn]

That sounds good.... I wonder why i hate resting so much?!

Because we're taught throughout our lives to feel guilty for being inactive, and that good and health-conscious people don't get sick.

 

[yabeeb]

Because we're taught throughout our lives to feel guilty for being inactive, and that good and health-conscious people don't get sick.

Yeah you're right Valentjin. i'm also scared of getting fat!!

 

[WillowJ]

That sounds good.... I wonder why i hate resting so much?!

also it can be boring, if we are unable to find something interesting to do that's within our physical and mental capabilities

 

[SOC]

That sounds good.... I wonder why i hate resting so much?!

I really hate resting, too, but I've becomed resigned to the necessity.

I used to be one of those always on the go, never sit down people. I miss that so much. I cope by not thinking about what was, but what is. I try to make the most of the life I have now.

 

[Sushi]

Thank you Taniaaust1. This is helpful. I need to review things. I have tried to email KDM but no response yet. Do you have any idea on the cost involved? Would it be more than 2-3k?

I also see KDM. The main cost is tests and they go over the suggested ones, explain them and help you prioritize according to your budget. My costs were a bit less than Valentijn's--maybe cause I had done quite a bit of testing before my visit and brought those with me.

I have been seeing him for about 3 years and have improved in many ways. New and better lab tests recently found an intracellular infection and I am now treating that with antibiotics and herbals.

Welcome to the forum and best wishes!
Sushi

 

[yabeeb]

I also see KDM. The main cost is tests and they go over the suggested ones, explain them and help you prioritize according to your budget. My costs were a bit less than Valentijn's--maybe cause I had done quite a bit of testing before my visit and brought those with me.

I have been seeing him for about 3 years and have improved in many ways. New and better lab tests recently found an intracellular infection and I am now treating that with antibiotics and herbals.

Welcome to the forum and best wishes!
Sushi

Thank you Sushi. This is promising. I will go to my banker for a loan... I mean my parents

 

[yabeeb]

I also see KDM. The main cost is tests and they go over the suggested ones, explain them and help you prioritize according to your budget. My costs were a bit less than Valentijn's--maybe cause I had done quite a bit of testing before my visit and brought those with me.

I have been seeing him for about 3 years and have improved in many ways. New and better lab tests recently found an intracellular infection and I am now treating that with antibiotics and herbals.

Welcome to the forum and best wishes!
Sushi

I forgot to ask, after the initial cost of the tests, what are the ongoing costs? Is it just follow-up consultations and prescriptions? Also does he do an exercise test?

 

[Valentijn]

I forgot to ask, after the initial cost of the tests, what are the ongoing costs? Is it just follow-up consultations and prescriptions? Also does he do an exercise test?

I take 4ME (european Nexavir) for about 270 euros per month, which is a nice bit cheaper than Nexavir at least. I also pay for probiotics and imported high-dose B12 to inject, but those are pretty reasonable. I get digestive enzymes, which insurance does cover. I don't know if the IV antibiotics will be covered by insurance ... I'll find out how all of that is handled on May 6th.

I did a single CPET at the clinic, which was pretty cheap. Under 100 euros I think? Otherwise, there's no ongoing costs except periodic clinic visits (typically every 3 months at first?)), and any additional testing to check on progress. No clinic subscription fee or anything silly like that.

 

[yabeeb]

Eeek that sounds quite expensive! If i needed Nexavir it would be £220 a month because i don't think its approved by the UK NHS. Plus cost of travel, hotel etc for visits. It will literally cost thousands of pounds! Is there any evidence of his success rates anywhere?

 

[ukxmrv]

Something else to consider would maybe seeing Dr Enlander when he comes to the UK or the Breakspear or Dr Myhill. All treatment by private doctors are expensive and experimental. There is very little research into outcomes.

It's a choice we have to make in the UK. Travel abroad for treatment, see the few doctors we have here or who visit or treat ourselves.

The NHS clinics are in some cases worth then useless as are the alternatives - the snake oil merchants like the Lightning Process only exist because in the UK we don't have NHS access to proper tests and treatment.

 

[Sushi]

Eeek that sounds quite expensive! If i needed Nexavir it would be £220 a month because i don't think its approved by the UK NHS. Plus cost of travel, hotel etc for visits. It will literally cost thousands of pounds! Is there any evidence of his success rates anywhere?

Word on the street has it that, in Europe, Nexavir (4ME) will not be available much longer, so that would lower the cost. He says that about 65% get better. That is what I would guess too from the many patients of his that I know. Some get dramatically better (remission) and some get considerably more functional. It is not a "quick fix" though as so much has gone wrong with us over the years.

It didn't cost me thousands of pounds,even though I came from the US. But there will be more lab tests about once a year to help keep your treatment on track. The followup labs are much less expensive. This year is was about $1200 for me.

Best,
Sushi

 

[Valentijn]

Word on the street has it that, in Europe, Nexavir (4ME) will not be available much longer, so that would lower the cost.

I don't understand ... is it Nexavir or 4ME that won't be available? I thought Nexavir currently wasn't sellable in Europe due to it not being packaged in single-dose ampules. And how would it not being available lower the cost?

 

[yabeeb]

Something else to consider would maybe seeing Dr Enlander when he comes to the UK or the Breakspear or Dr Myhill. All treatment by private doctors are expensive and experimental. There is very little research into outcomes.

It's a choice we have to make in the UK. Travel abroad for treatment, see the few doctors we have here or who visit or treat ourselves.

The NHS clinics are in some cases worth then useless as are the alternatives - the snake oil merchants like the Lightning Process only exist because in the UK we don't have NHS access to proper tests and treatment.

Thank you UKXMRV. I never knew all this because i put a lot of faith in the NHS (had to really cos i used to work for them!). The odd thing about the lightning process for me was that it worked like a miracle. I literally was symptom free for a couple of months but then i had a re occurrence of an old psychotic episode and it created such trauma in me again (adrenalin/anxiety etc etc) that my symptoms went bezurk again. Since then i have never been able to 'apply' the process in the same way which is a lot to do with visualisation - which i am sh*t at. Have you done it?

 

[yabeeb]

Word on the street has it that, in Europe, Nexavir (4ME) will not be available much longer, so that would lower the cost. He says that about 65% get better. That is what I would guess too from the many patients of his that I know. Some get dramatically better (remission) and some get considerably more functional. It is not a "quick fix" though as so much has gone wrong with us over the years.

It didn't cost me thousands of pounds,even though I came from the US. But there will be more lab tests about once a year to help keep your treatment on track. The followup labs are much less expensive. This year is was about $1200 for me.

Best,
Sushi

Cool thanks Sushi. I'm so sick of it i am willing to try anything. Does he help / recommend around pacing etc or is that still all up to you to manage / figure out?

 

[Sushi]

Cool thanks Sushi. I'm so sick of it i am willing to try anything. Does he help / recommend around pacing etc or is that still all up to you to manage / figure out?

If you ask him, yes, he will comment. But in Brussels appointments are very short (not so in Reno) so, since the information on pacing is readily available (we have some experts here! ) I wouldn't use consult time for something you can learn about without his help.

If, on the otherhand, you want exercise, VO2 max, testing, he will do that. @Valentijn has had that done there.

Best,
Sushi

 

[yabeeb]

If you ask him, yes, he will comment. But in Brussels appointments are very short (not so in Reno) so, since the information on pacing is readily available (we have some experts here! ) I wouldn't use consult time for something you can learn about without his help.

If, on the otherhand, you want exercise, VO2 max, testing, he will do that. @Valentijn has had that done there.

Best,
Sushi

Cool thanks Sushi. That's useful to know.

 

[ukxmrv]

No, I haven't done the Lighning Process because in the early days they didn't exist, and way back then I did equally stupid things like NLP and similar things to the LP. All of which the sellers of claimed would cure me. Learned my lesson that this was a waste of my limited time and money. Didn't help in any way what-so-ever with my sore throat, glands and flu-type illnesses and all the infections. I don't have anxiety or adrenaline problems.

Maybe that is something others will be able to help you with. If the LP can clear up your symptoms for months then maybe there are other similar things that could help with this? Must have been awful to lose the improvement you made with LP.