In Belgium to see KDM

[snowathlete]

how are you now snow?

Struggling at the moment, I've been on Prednisolone for about a week and a half to try and treat the ulcerative colitis. It is working - not sure if it will be enough to get rid of it, but my stomach is definately more calm and I have almost stopped losing weight for the first time in 6 months which is good cause I dont have much more to lose.

I haven't had to go back to bed in the day since I started either, which i was doing before because i was so ill in general. Not too much in terms of side-effects so far. A bit moody and inpatient, and my legs are significantly weaker. I'm a bit worried about the weak legs, getting quite hard to walk - going to contact the gastro on Monday about that. But hopfully I can continue with it and get the colitis into remission. Then I'll have a better idea where I am with all the other stuff and the treatment from KDM.
Oh, and I had a brain MRI the other day, so waiting for the results of that.

 

[LisaGoddard]

Hi Joel, Sorry to hear it's been such a rough time. I hope the MRI is fine, andthe predinisolone keeps working.

 

[maryb]

@snowathlete
are you still taking the a/biotics from Kdm whilst on the steroids?

 

[serg1942]

Hi Daffodil, It's funny... thanks to GcMAF KDM prescribed, I enrolled into medical school 2 and a half years ago, and I have been focusing on my studies ever since, so I barely read forums as I did before, including this one where I learned so much and knew so many incredible people...

I say it's funny b/c I am passing through a terrible herx due to an herbal protocol he's prescribing for Lyme (similar to Cowden's), and because after a couple of years this is my first week in bed again, and I am reading the forum after a looong time, an have found your post by chance...

Yes, I agree... GcMAF for me was a miracle... from a 5-10% to a 50-70% I am at the moment... We'll see how finally Lyme relates to CFS and how treating it works for the whole entity we call CFS...

Any how, I'm really glad to read successful stories like mine, and just hope this is not the end, but just the beginning!

Best!
Sergio

 

[Katherine]

Some guy said you can only trust a doc if you know he has cured at least 3 people. I don't know 3 people he has cured ..only people who he is treating.
This is why we should keep threads open so we and others can check progress of treatments by our doc and pass on the good or bad news

I agree. In fact it would be interesting if CFS docs could list how many patients they are currently treating, what they have been diagnosed with (test results), how they are treating the diseases and who has been cured. Obviously not naming patients but just producing data on what the clinic is doing with its patients.

 

[SOC]

I agree. In fact it would be interesting if CFS docs could list how many patients they are currently treating, what they have been diagnosed with (test results), how they are treating the diseases and who has been cured. Obviously not naming patients but just producing data on what the clinic is doing with its patients.

And if there is no cure? What if all we have at the moment is improvements in quality of life? We can hardly blame doctors for not curing patients when there is no cure for the illness at the moment.

I know of a number of people who have experienced significant improvements up being able to lead relatively normal lives -- work, socialize, exercise. I wouldn't go so far as to say they're cured.

I cannot be considered cured, by any stretch of the imagination (okay, maybe by PACE standards ), but I'm very pleased to have improved from bedbound and unable to care for myself to largely housebound and tutoring part-time. It's made a huge difference to me. My doctors get most of the credit for my getting some of my life back. I don't think they should be considered inadequate because they didn't "cure" me.

 

[Katherine]

And if there is no cure? What if all we have at the moment is improvements in quality of life? We can hardly blame doctors for not curing patients when there is no cure for the illness at the moment.

Cure is dependent on what the patient has been diagnosed with and whether the problem has been correctly identified and then treated. My post did not talk about blaming doctors. I was interested in what people are being diagnosed with who are visiting CFS clinics and how that is being treated. Nothing extraordinary about that.

I cannot be considered cured, by any stretch of the imagination (okay, maybe by PACE standards ), but I'm very pleased to have improved from bedbound and unable to care for myself to largely housebound and tutoring part-time. It's made a huge difference to me. My doctors get most of the credit for my getting some of my life back.

Sure, some illnesses are incurable, but it will be fairly evident what the expectations are for the patient when they receive their diagnosis.

I don't think they should be considered inadequate because they didn't "cure" me.

They would only be considered inadequate if they didn't correctly identify your problem or they didn't apply the correct treatment for your condition. I can't really see the objection (from a patient's point of view) to publicising data from clinics.

 

[SOC]

Cure is dependent on what the patient has been diagnosed with and whether the problem has been correctly identified and then treated. My post did not talk about blaming doctors. I was interested in what people are being diagnosed with who are visiting CFS clinics and how that is being treated. Nothing extraordinary about that.

Sure, some illnesses are incurable, but it will be fairly evident what the expectations are for the patient when they receive their diagnosis.

They would only be considered inadequate if they didn't correctly identify your problem or they didn't apply the correct treatment for your condition. I can't really see the objection (from a patient's point of view) to publicising data from clinics.

Sorry, I thought we were talking about ME/CFS, for which there is definitely no cure at present. What other diagnoses are you referring to? Are you talking about secondary conditions such as hypothyroid or POTS, or specific infections like Lyme Disease or EBV?

I'm finding your posts a little confusing, but maybe we are miscommunicating because I am thinking about what treatments doctors use in the US and you are thinking about what's available at "CFS Clinics" in the UK.

 

[snowathlete]

@snowathlete
are you still taking the a/biotics from Kdm whilst on the steroids?

Yes, continuing the treatment prescribed by KDM as before, no change while I'm on the steriods, but he knows I am on them too.

 

[SOC]

@Katherine

Maybe you would like to start a new thread in an appropriate forum asking patients who are willing to list what infections they've been diagnosed with and how much benefit they're received from treatment for those infections. I doubt you'll see a lot of 100% cures of ME/CFS, but there might be some interesting information on what's helping people and what's not.

 

[maryb]

I know someone who recovered enough to go back to work full-time after seeing KdM for 12 months. Her treatment was mainly based on antibiotics, she was in her twenties. Dr My-hill thinks if you can get the body to 51% recovered it can cope with viruses etc itself, so dealing with all the bacterial co-infections successfully?
maybe that's what happens when his treatment is successful.

 

[serg1942]

I would like to give my opinion on this. I don't think most doctors, especially those who are having "success" in treating CFS, will report on their statistics, and even more, I think it would be a mistake. They need and most try to lay low, in order to not put at risk their license...A pity, of course, but a sad reality...

Sergio

 

[heapsreal]

I would like to give my opinion on this. I don't think most doctors, especially those who are having "success" in treating CFS, will report on their statistics, and even more, I think it would be a mistake. They need and most try to lay low, in order to not put at risk their license...A pity, of course, but a sad reality...

Sergio

I think your right. My doc just does the basics of helping people with symptoms or maybe if something obvious like any other doc would treat. But i have found if i approach him about a certain treatment etc then he is generally on the ball with it and will explain the pros and cons. I have heard other docs more or less say he is abit of a crack pot as he treats cfs but then these are doctors that say cfs is depression and are in the prozac/cbt/get crap that hasnt shown to help anyone very much.

 

[Katherine]

@Katherine

Maybe you would like to start a new thread in an appropriate forum asking patients who are willing to list what infections they've been diagnosed with and how much benefit they're received from treatment for those infections. I doubt you'll see a lot of 100% cures of ME/CFS, but there might be some interesting information on what's helping people and what's not.

Sure, people already do that here on this forum....those members who don't mind posting their results publicly. My point is that if people are good enough to write about their experiences on here for the benefit of others, we should at least expect them to write honestly, otherwise what is the point? It's healthy to remain objective and cautious, this does not equate to doctor bashing (which usually has no substance). My original post was not actually intended to undermine the work of any CFS doctor. It's also unlikely that anything said on this forum would put a doctor's job in jeopardy...we don't make those decisions. Thanks for your reply in PM btw.

 

[maryb]

Personally I think PM's are the way to go if you want a opinion about a ME/CFS doctor and specific treatments, unfortunately we know how the internet can be used against doctors who try to help us patients. We don't need to name them
We are all very individual in our responses to ME, Lyme, we may share symptoms a lot of the time but what may help one may not another, different co- infections etc. I would never want to put someone off trying a doctor/treatment just because that particular doctor's recommendations didn't work for me.

 

[Katherine]

Personally I think PM's are the way to go if you want a opinion about a ME/CFS doctor and specific treatments, unfortunately we know how the internet can be used against doctors who try to help us patients. We don't need to name them
We are all very individual in our responses to ME, Lyme, we may share symptoms a lot of the time but what may help one may not another, different co- infections etc. I would never want to put someone off trying a doctor/treatment just because that particular doctor's recommendations didn't work for me.

I read many accounts on here, good and bad, before I went to see a CFS doc for testing. Ultimately it was my personal decision. I think it would be very detrimental to all members if they could only talk about treatments and doctors via PM. You can learn something by reading about other people's lab tests and treatments. Why such caution? It seems unnecessary to me.

 

[maryb]

@Katherine
lab tests and treatments are not personal opinions.

 

[Katherine]

@Katherine
lab tests and treatments are not personal opinions.

Without wanting to derail an interesting thread, I think people can post anything they want in a free world. Including opinions, dare I say Everyone makes their own choice. If people talk honestly I can't see the concern.

 

[maryb]

@Katherine
you see my view is - say a newly diagnosed person (ND) comes on here and sees a post being really derogatory about an ME doctor who they were thinking of contacting, now I'm only talking about a treatment not working in general for instance, if that was to put ND off seeing that doctor I would be unhappy about that, who knows, maybe they would miss out on the chance of a successful treatment.
A lot of people come onto these forums and haven't a clue about a lot of stuff, they are the ones I worry about. Others more savvy will do a heck of a lot of research and make their decisions based on that.

And yes of course I feel we do have to protect the reputation of good ME docs wherever we can, there are far too few as it is.

I was just reading about a doctor in the USA who stood up to the authorities (FDA) over the issue of MCS (which I have severely) they wanted to strip him off his license over his treatment of patients, petro chemical affected etc. they failed and he won his case but had to pay massive costs. he now has to advertise his treatment as non FDA approved. one word for them ba.......ds

 

[Katherine]

@Katherine
you see my view is - say a newly diagnosed person (ND) comes on here and sees a post being really derogatory about an ME doctor who they were thinking of contacting, now I'm only talking about a treatment not working in general for instance, if that was to put ND off seeing that doctor I would be unhappy about that, who knows, maybe they would miss out on the chance of a successful treatment.
A lot of people come onto these forums and haven't a clue about a lot of stuff, they are the ones I worry about. Others more savvy will do a heck of a lot of research and make their decisions based on that.

Sure, I do see that point, but really can you put a ban on people posting about their experiences/opinions of doctors and the testing and treatment they administer? It's not practical. In life people often rely on the recommendations of other people...but that is a choice. Whatever you do, you will not know what that doctor is like until you visit him.

And yes of course I feel we do have to protect the reputation of good ME docs wherever we can, there are far too few as it is.

True, if a doc really does live up to expectations then people will talk about this, but should we lower our scrutiny of CFS docs just because there are so few of them to consult with? What do you mean by 'protect the reputation of good ME docs'? Allow positive comments and eliminate negative ones? Surely that is more likely to arouse suspicion of bias. If a doctor is genuinely good he won't need patients to manicure his image. Fair scrutiny, which is important in the medical profession, means accepting all comments.

I was just reading about a doctor in the USA who stood up to the authorities (FDA) over the issue of MCS (which I have severely) they wanted to strip him off his license over his treatment of patients, petro chemical affected etc. they failed and he won his case but had to pay massive costs. he now has to advertise his treatment as non FDA approved. one word for them ba.......ds

Yeah, Garth Nicolson had problems too with the authorities even though he helped a lot of patients with GWS....but that is another story. Patients can't really protect doctors from the authorities....it's usually a legal matter.