• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Initial appointment with Dr Bansal

How, where, when
- Dr Bansal is working at St Anthony's hospital in Surrey. It's private. You have to ring up Spires Healthcare for an appointment
- I found Spires Healthcare a bit difficult to get through to, it took about 4 phone calls over 3 weeks to get someone on the phone who could answer my questions about Dr Bansal. But if you don't have questions and just want to book it's easier.
- I waited a couple of months for an appointment. He works on Thursdays
- I was told it would be £250 but I have only been billed £200 so the lady on the phone may have made a mistake. He sends a bill after the appointment. Blood tests would be extra but I didn't have any.
- It's a 45 min initial appointment. Follow ups are shorter and cheaper.

Assessment
- Checked for EDS/hyper mobility and fibromyalgia.
- I brought a succinct print out that I could refer to, because I forget. It included supplements and meds I'm taking, significant medical history, and my symptoms. He kept it.
- I also brought my diagnosis letter from the Sutton CFS clinic, where he used to work (though I never met him) and he wanted a copy of that.
- He asked the questions you'd expect about unrefreshing sleep, but also some curveball ones eg 'do you have stretch marks?'

Treatments
- Recommended specific supplements from a handout of long list of supplements which he probably gives to everyone. On the sheet it recommends ballpark places to get the supplements eg 'body building websites' or 'chemists'.
- The recommendations he gave me based on my history, and what I was already taking:
L-carnitine 500mg once daily (From body building website)
PQQ-10mg / CoQ10-100mg combination (From body building website)
Vitamin B12 patches, 1mg alternate days or 5mg per week (From Amazon)
Luteolin 50mg daily
Phenergan 10mg (or less) liquid form (from chemist)
Melatonin 3 to 5mg (from internet)
N-acetylcysteine/NAC 600mg per day

- Said to come back in a few months, and we could think about trying low dose thyroxine which may possibly help, but may have side effects
- Wrote prescription for Aciclovir 400mg tds for 3 months
- Approved of probiotics and suggested to cut wheat from diet

Approach
- Said it wasn't worth doing more thyroid tests - better to just try the medication and see whether it works
- Emphasised that there is hope because of the new research about the test for CFS. This research is promising because of a statistical reason which I didn't understand, more promising than other research. He said that if the research is replicated and it works, then research will probably speed up about ME/CFS treatments.
- Didn't ask GP to prescribe B12 injections because my GPs don't sound co-operative. I have asked for an injection in the past and they turned me down. He didn't want to get on the wrong side of my GP.

On Dr Bansal
- He said he's probably going to retire completely in 5-6 years.
- Talked a lot of science detail which completely passed me by about energy. I know a lot of people on PR are 'expert patients', au fait with lots of technical info and the latest research and the politics. I got the impression he's used to talking to 'expert patients'. I am not one of them so it was very overwhelming for me, I couldn't take it in, and I didn't ask questions that I could have asked because I was overwhelmed. But he's proved he knows his stuff.
- The friend who came with me was impressed by him as a doctor, said he was an academic. My friend works in the NHS
- He shows awareness of the costs of things. He poo-poohed the Perrin technique and made faces about how much osteopaths charge. He said there's nothing out there that has more than a 10% rate of success (the Perrin technique claims a 40% chance of success).

Next steps
- I got a copy of his letter to my GP 2 working days after the appointment.
- My friend is researching for me exactly where I can get the supplements and meds, and where's cheapest.
- I shall go back in 5-6 months

I was pretty moody when I went because of lack of sleep and problems with taxis on the way there. So I felt a bit negative about the experience but I don't think it's Dr Bansal's fault. My friend didn't take notes (we miscommunicated about that beforehand) so there's a lot of detail he said that's been lost. If you can take in new concepts, Dr Bansal will be able to tell you things. Time will tell if the stuff he's recommended works for me.

Comments

It's nice to hear your news @lior I hadn't seen you post on the board for some time and was hoping you were OK. I thought of sending you a message yesterday to see how you were doing....but got overloaded with so many jobs to do!

Dr Bansal certainly doesn't overcharge for a very decent consultation. That is not much more than I would be paying for treatment at the dentist....which is very good.

But of course all the supplements are extra cost for you.

I really hope this helps. He does sound as if his approach to ME/CFS is very positive. Did he mention anything about success rates with patients?

I understand how you must have felt re: getting to the appointment and the journey. Things like that are incredibly stressful, and often involve having to go without some sleep. I know...I've "been there".

Wishing you well. My kind thoughts :hug::tulip:
Wolfcub
 
Thanks @Wolfcub :) I'm normally on the gratitude thread and that's pretty much it. What threads are you normally posting on?

You're right, it's pretty decent.

He didn't mention a success rate, but I asked around a lot before I chose to go to him. People say mostly positive things about him, anecdotally I've heard of people getting modest results through him.
 
I have been following Howard's thread, and a few others, but have to catch up on some which I use to post on a lot. I've had more work to do, that's why, I think.

I hope this works out for you. It is definitely worth a shot, and it is refreshing to find a doctor who has some good understanding of ME/CFS in UK.
 
I was wondering too, about the stretch marks. I have some faint silvery white ones over hips and very top of thighs, but they have been there since I was a teenager, never went purple, and never appeared anywhere else or got worse.

My skin is quite white so they don't even show much unless I get a tan.

I always thought that was a collagen deposit thing?
 
"He asked the questions you'd expect about unrefreshing sleep, but also some curveball ones eg 'do you have stretch marks?' "

It may have sounded an odd question but stretch marks can be symptoms of various things or indicate something is less likely eg I think in some connective tissue disorders they may be less likely to have and I once had a doctor ask me the same question re stretch marks as she was considering if I could have babsia?? (I'm not sure if Im spelling it right, its something which ticks can give people) can cause marks like these in certain spots.
 
@Tella I made progress with my health, enough to notice. I can see friends a little more regularly and normally I have a little time in the day that I can be productive - before, it was normal to not be able to be productive at all.
I feel I have plateaued now, and I'm going back to see Dr Bansal in December.
Last week I pushed it too hard and I've had a bad week, like I used to be. This shows how much better I've been in the last few months.
 
@Tella I made progress with my health, enough to notice. I can see friends a little more regularly and normally I have a little time in the day that I can be productive - before, it was normal to not be able to be productive at all.
I feel I have plateaued now, and I'm going back to see Dr Bansal in December.
Last week I pushed it too hard and I've had a bad week, like I used to be. This shows how much better I've been in the last few months.
Are u still on antivirals? Have u markedly get worse with them at first before improving? Is that to treat a virus that u definitely identified? How long will u keep taking it? Glad u are feeling better
 
@Tella I didn't get worse on the antivirals, I only improved.
I had EBV.
I don't know how long I will take it for, but I've been on them 4-5 months so far.
That’s great. Do u know if the Dr can see me by Skype? Does he prescribe other antivirals? How much improvement did u get on some scale so I can visualize and do u think it’s all down to antivirals?
 
@Tella I'm not an expert on Dr Bansal, but if you call up St Anthony's hospital where he works, you can find out.

I think my improvement is down to a combination of the antivirals and the extra supplements he suggested. Even if it's just one of the supplements (I wouldn't know which one), it's definitely his suggestions that have made some improvement for me. I don't know how to quantify the change - I've already said:
I can see friends a little more regularly and normally I have a little time in the day that I can be productive - before, it was normal to not be able to be productive at all.
 
@Tella I'm not an expert on Dr Bansal, but if you call up St Anthony's hospital where he works, you can find out.

I think my improvement is down to a combination of the antivirals and the extra supplements he suggested. Even if it's just one of the supplements (I wouldn't know which one), it's definitely his suggestions that have made some improvement for me. I don't know how to quantify the change - I've already said:
Thank u for sharing and all the best to u! :)
 
Hey @PracticingAcceptance

I've just contacted basnal again to get an appointment. He's told me who to ring, problem is I see you've mentioned Acloyvir. I can't understand why he'd prescribe this - it's bioavailability is very low compared to Valtrex. Although ACV does block ebv viral shedding, so it has some effect on ebv if taken every single day.

Did you get any long term relief from his help and taking hte acloyvir?
 
Did you get any long term relief from his help and taking hte acloyvir?
You sound like you know more about this than I do. You'd have to ask him about that. I do find that it keeps my viral symptoms more under control - not perfect but certainly less sneezing and sore throats than I used to have. I used to have a blocked nose at night so much of the time so it's helped improve my sleep. It's hard to say if it helps with the fatigue, I think it might do a little. I am also taking antihistamines which I think also help with the viral symptoms.
 
Sounds like you do make some progress with it, suspect it probably stops any further deterioration which in itself is really key.

Sorry you're struggling so much still, but glad you've seen some improvements.

I don't really know much about the effects of this drug on people to be honest, just that valcyte seems to be the best drug for ME/CFS, possibly followed my famvir.

Thanks for the info :)
 

Blog entry information

Author
PracticingAcceptance
Read time
3 min read
Views
4,436
Comments
19
Last update

More entries in User Blogs

  • Daily doodal dandy
    Just testing this out
  • Covid day 75
    Well since my last few updates I started to suffer from exhaustion and...
  • Pray
    If you pray, will you pray for me please? I have covid pneumonia and...

More entries from PracticingAcceptance