Testing by specialist doctors ?

[Hoffgrad]

Wow... I thought my knowledge of ME/CFS was good, but there are some of you here, who clearly have much more experience.

Like most of us, I am an intelligent woman and was given the diagnosis of ME and fibromyalgia about 4 years ago when my GP referred me to the Bath Rheumatology Hospital. Typically, I saw a fairly inexperienced student doctor who asked me a series of questions. Pretty standard stuff. There was no interest in my medical history whatsoever. I felt I wasn’t consulted as an individual, and the answers to the questions, could have covered many illnesses, they were so vague.

As we know, there is no cure for CFS, but there again, how can you cure a list of symptoms, where there is no mention of ‘cause’?

I’m no doctor but I have a strong interest in health, and I know my own body.

The NHS tests that my GP, reluctantly agreed to, were pretty general. FBC, LIver function, thyroid, Vit D, B12... all came back normal, but there have been no further investigations for anything else.

I am now so poorly, that I want to see someone privately. I’m raising the money, as I feel there must be someone, with some kind of treatment ....immunology even.... other than the appalling patronising GET and CBT (?), on offer in the U.K.

I have booked a private appointment with Dr Bansal for end May. It’s quite a long journey to see him, which I’m prepared for, as I’ve heard great things about him. However, I have read a few people say that he only offers the management advice. I had hoped he would investigate my history and do more invasive testing.

I’m now wondering if he is the right person to see. As I say, I have money set aside to pay privately but I can’t afford to waste it on the wrong person, and I really want to try a new kind of treatment.

If anyone has any experience of a private consult with a science based doctor, who is progressive and integrative, then I’d be most grateful to hear from you. If I have to travel further afield, then I will. I am determined not to give up on this.

 

[andyguitar]

Glad you have found somethings of interest here. Take the ideas about causation and treatment with a pinch of salt though. Suggest you have a look at Encephalitis.

 

[Hoffgrad]

Hi. Thank you for your comment.

I may be new to the forum, but I’m very knowledgeable as far as health and health his condition is concerned.

Encephalitis (swelling of the brain) is a very serious, and quite rare condition, usually caused by a virus. Whereas with ME, inflammation of the brain is a symptom that waxed and wanes.

As I have mentioned in one of my public posts, we are all different in terms of symptoms...and the causes will also differ.

Forums are always a mix of thousands of people, all different personalities, and belief systems.

I tend to dip in and out of them, but not obsess.

Thank you again.

 

[Hip]

I have booked a private appointment with Dr Bansal for end May.

There is almost no doctor in the UK who will offer you a treatment that can make a difference to your ME/CFS symptoms. For that, you'd need some of the treatments offered by doctors in the US, who use things like oxymatrine, Valtrex, Valcyte, low-dose naltrexone and others. There's no guarantees that any of these will work, but they do help some patients.

In some cases you can try these treatments yourself. You might find this roadmap document useful.

 

[Hoffgrad]

You can be prescribed Valtrex antivirals here in the U.K. I was prescribed it years ago (prior to ME diagnosis), for shingles.

It was ME Association who gave me the name of Dr Bansal as someone who has a vast amount of knowledge of this complex illness. It is him, I am going to meet with in May. I am aware that there is no cure, but I need to speak to a science based specialist, rather than Dr Google.

At least a lengthy consultation will be of use, where we can discuss my personal experiences and medical history.

I’ve read some of his research and I respect his empirical background.

It can do no harm and whilst I’m aware of the situation, it’s important to be forward thinking and positive.

 

[Hip]

You can be prescribed Valtrex antivirals here in the U.K. I was prescribed it years ago (prior to ME diagnosis), for shingles.

For shingles yes, but it can be tricky to get a Valtrex prescription for ME/CFS; Dr Sarah Myhill in Wales was prescribing Valtrex to her ME/CFS patients, following the same antiviral ME/CFS protocols used by Dr Martin Lerner in his published studies, but the General Medical Council ordered Dr Myhill to stop using it (even though Myhill is a private GP). There is not the same clinical freedom in the UK that you get in the US.

Though a quick search of these forums reveals that Dr Bansal has prescribed acyclovir for ME/CFS; whether he is still doing this I am not sure. If you Google search him on these forums, he is well regarded by patients with a good reputation.

You can buy you own Valtrex from the prescription-free pharmacies that many ME/CFS patients are forced to use.

Of course Valtrex / acyclovir is only useful for ME/CFS linked to Epstein-Barr virus; it does not work for ME/CFS associated with HHV-6 or cytomegalovirus; for that you need Valcyte. And neither of these drugs will help in the case of enterovirus-associated ME/CFS; for that Dr Chia uses oxymatrine and Epivir.

Unfortunately in the UK we do not even have the means to test for the chronic enterovirus infections found in ME/CFS. It requires a sensitive antibody neutralization test, which is available at ARUP Lab in the US.

 

[Wishful]

As we know, there is no cure for CFS, but there again, how can you cure a list of symptoms, where there is no mention of ‘cause’?.

It is possible to treat some of the symptoms to some degree, but there's no 'one treatment works for everyone'. If you check the forums, especially the Treatment sub-forums, you'll find suggestions. One problem is that many of the treatments work really well...for a short period, then stop working every after. After 17 years, I've found only two treatments that continue to work reliably for me, and neither are treatments that anyone else has suggested here, and neither was suggested by a doctor. Neither are prescription drugs either; only two prescription drugs worked for me, and then only for a limited time. Since you'll probably ask, the two that work for me are cumin (Cuminum cyminum: blocks my PEM) and T2 (or iodine) that reduces my baseline ME symptoms.

Another important thing you can do is to find out if there's anything in your diet or lifestyle that makes your symptoms worse. Maybe there's something you eat every day that is bad for your ME/CFS. Keeping a daily journal of food/activity/symptoms (timed to the minute) is very useful, since it's so easy to forget or misremember what we ate, did, or felt days previous, and the mental lethargy of ME/CFS doesn't help.

It is possible to reduce your symptoms, even when we don't understand the cause. Doctors who aren't ME/CFS experts are unlikely to be able to suggest treatments that will work for you. You have a better chance of finding something that works for you (or things that you need to avoid) by just trying different things and being aware of any changes in your symptoms. As you said, you know your body, and know it far better than a GP can.

Good luck. I hope to read a future post about how 'whatever' worked for you.

 

[Daffodil]

@Hoffgrad i tried to send you a private message but it wouldnt let me. I wanted to suggest Dr. Kenny DeMeirleir in Brussels. In my opinion, he is the best of all. I have seen many, having been sick 25 yrs.

Best of luck

 

[Hoffgrad]

@Hoffgrad i tried to send you a private message but it wouldnt let me. I wanted to suggest Dr. Kenny DeMeirleir in Brussels. In my opinion, he is the best of all. I have seen many, having been sick 25 yrs.

Best of luck

Thank you for this name. I will research him. All information is very useful and of course, as we all know, we all have similar symptoms, but to a greater or lesser degree. I am seeing Dr Amolak Bansal here in the UK at the end of May. He has such a great reputation, and I'm looking forward to it. But, I will read about Dr DeMeirleir's work, too. I think many doctors will consult by Skype now, if you live overseas.

 

[Daffodil]

@Hoffgrad i have never heard of dr. bansal. demeirleir's team is the only one to have done sequencing on tissue of CFS patients.

demeirleir doesnt use skype but will do phone. you have to see him at least once a year though for legal reasons

 

[Hoffgrad]

It’s interesting that there is little mention of Dr Bansal on here. He has devoted his career to immunology and allergies... he’s not a fan of GET, even though in the U.K., the NHS offer that, as well as CBT. He is retiring from NHS work in November, and concentrating on his private patients. Apparently he cares a great deal about the patients, but I can imagine that he was frustrated workingbwithin the NHS framework and budget constraints. Oh and the limited time he would have per patient consultation (ten minutes).

Anyway, not sure if you are UK or US, but is one of the good guys, who knows his stuff. A quick search on YouTube will lead to a seminar he gave... think it was in Sweden. I found it very interesting as was more science based.

I’m now also exploring B12 deficiency. Controversial I know, as in the U.K., if your blood results come back from the lab as ‘normal’, you are refused further investigation. All of my so called ME symptoms are exact fits for B12 deficiency.

Dr Bansal believes that B12 shots should be given to see if symptoms improve. Must certainly I have had neuropathy, and still have awful cognitive problems, memory, dizziness, vitiligo appearing as white patch at the top of my arm... tingling in fingers.

I presented all of this symptoms to my GP (who I refuse to see again), and she just said it was ME! Crazy. She refuses to accept that I could have pernicious anaemia.

That’s why I’m now paying for this. Mistakes are happening all too frequently over here now, and I feel I’m losing my best years, with an illness that may be a simple case of treating a deficiency.

 

[Ljcha1892]

Wow... I thought my knowledge of ME/CFS was good, but there are some of you here, who clearly have much more experience.

Like most of us, I am an intelligent woman and was given the diagnosis of ME and fibromyalgia about 4 years ago when my GP referred me to the Bath Rheumatology Hospital. Typically, I saw a fairly inexperienced student doctor who asked me a series of questions. Pretty standard stuff. There was no interest in my medical history whatsoever. I felt I wasn’t consulted as an individual, and the answers to the questions, could have covered many illnesses, they were so vague.

As we know, there is no cure for CFS, but there again, how can you cure a list of symptoms, where there is no mention of ‘cause’?

I’m no doctor but I have a strong interest in health, and I know my own body.

The NHS tests that my GP, reluctantly agreed to, were pretty general. FBC, LIver function, thyroid, Vit D, B12... all came back normal, but there have been no further investigations for anything else.

I am now so poorly, that I want to see someone privately. I’m raising the money, as I feel there must be someone, with some kind of treatment ....immunology even.... other than the appalling patronising GET and CBT (?), on offer in the U.K.

I have booked a private appointment with Dr Bansal for end May. It’s quite a long journey to see him, which I’m prepared for, as I’ve heard great things about him. However, I have read a few people say that he only offers the management advice. I had hoped he would investigate my history and do more invasive testing.

I’m now wondering if he is the right person to see. As I say, I have money set aside to pay privately but I can’t afford to waste it on the wrong person, and I really want to try a new kind of treatment.

If anyone has any experience of a private consult with a science based doctor, who is progressive and integrative, then I’d be most grateful to hear from you. If I have to travel further afield, then I will. I am determined not to give up on this.

I was wondering how your appointment with Dr Bansal went?

A little late I know but I’m just researching him at the moment.

 

[rainbowbluebells]

Hi just a quick note. I saw Dr Bansal over the phone on the nhs back in early 2017 and he literally said my symptoms were caused/exacerbated by lack of sleep and anxiety. I have severe m.e.

And recommended some supplements which I’m taking already, B12, and said I need to feel in “charge” of my health. Maybe private appt is different I don’t know.

Oh, and then discharged me as I’m too ill to travel to their clinic.