@Countrygirl it's fantastic you have made this set up where people can be seen in your home. Whereabouts do you live?
I went to see Dr Bansal this week. I am waiting on my friend who came with me to send me her notes before I publish a blogpost on here about the appointment.
The short version is that he had a handout with lots of supplements on it, and picked out a few that would likely work for me based on the assessment he took. He also prescribed me Acyclovir. I have to find the medicine and supplements myself through a variety of sources, he said to shop around for the best price.
He said that testing isn't worth it because the tests will probably come back normal anyway; it's worth just trying medication and seeing if it works. (I read this kind of thing in the Dr Myhill book too.) So I have not paid for any extra tests.
I shall see him again in 4-5 months to try some more medications.
@Seadragon you sound a lot more clued up than I am, so you have an advantage there when you meet Dr Bansal. I wish you all the luck in getting something that works for you. I didn't go in asking for anti-virals, he suggested it and I jumped at the chance.
I have noticed a definite improvement in my symptoms, but I don't know if it's the acyclovir, the supplements, or something else. Whatever it is, it's highly likely that it's thanks to Dr Bansal that I have made this improvement.
Not experiencing any long term side effects, though I did have a fortnight where I got flashes of vertigo easily, a lump on my armpit that's now gone away, and a single occurrence of a visual disturbance - nothing enough even worth going to the GP about.
So glad to hear you have had some improvements in your ME @lior and good to know you feel seeing Dr Bansal was worth it and that he has helped you.
He has had mixed reviews here so I was uncertain about going but think I will give it a go based on yours and a few other's positive experiences!
His clinic is only around half an hour from where I live so less difficult for me to get to than Dr Chaudhuri in Essex who was my first choice (I had to cancel that appointment a couple of years back after waiting 6 months on the NHS because I wasn't well enough to get there at the time).
Really enjoy reading your posts (and the positive way you manage your health) in the community/emotional support threads BTW.
Thank you so much for saying that, it made me glow. I really want to make some kind of positive difference in the world, even if it's a small one, so if someone enjoys what I write, that's something
I hope you'll get a lot out of whatever Dr Bansal gives you. He's probably going to retire in a few years, so it's good you're taking the chance to see him while you still can. Hope to hear an update from you in a few months, whether the results are positive or not.
@Seadragon I reckon it would likely still be worth your while. I reckon I have typical ME symptoms aside from a couple of things. You are a different case from me, so he may treat you differently. He does know his stuff and he'd be up for a conversation about science-y stuff that I don't understand but you might. I think it would work in your favour if you can talk to him on that level.
I am guessing that at the first visit he'd give a kind of 'starter pack' of stuff that works for a lot of people, and then once some of that works or doesn't, he would move on to the next stage of things with side effects. He says that next time we can talk about trying low dose thyroxine and b12 injections (I'm just trying the patches for now). The thyroxine may have side effects for me given my case.
The supplements he recommended me were personalised to my case.
He didn't ask for a list of tests, and I didn't bring one, but I might do next time. I was diagnosed at the NHS clinic where he used to work, so he signed off on my diagnosis even though he'd never met me. So he trusts the testing I've had does confirm my diagnosis.
I did want more testing but he said that the tests would likely come back in the normal ranges, so it's better to just try the meds and save my money on the test costs. For thyroid stuff that makes sense to me as an approach.
So you see, my case is probably a lot different from yours, if you have a lot of unusual symptoms I would guess it's more likely that testing would be worth it. I think if I had absolutely insisted on testing he might have gone along with it.
@Sarah94 as I said, it might have side effects in my case. I have PCOS, I think that was the reason he said that. I can't remember if he detailed the possible side effects for me.
He wouldn't have prescribed you something without telling you about likely side effects.
I'm guessing it wouldn't affect you if you don't have PCOS.
@lior I've seen 4 ME/CFS consultants, so lots to share!
I also would recommend Dr Weir. (I am his patient seeing him at his Harley Street clinic for a little over a year). He has the most practical recommendations regarding ME/CFS.. He also keeps up to date on research, understand the situation in the UK and listens to his patients. He has been willing to try different medications, some at my request.
I am also at the same time under KDM's care, for about the same length of time.
I find that between the 2 of them, there is commonality in treatment each with different focus. Dr Weir has practical advice and is generous with his knowledge and KDM is focusing on gut, supporting immune system and feeding the mitochondria.
I am not on antibiotics with KDM.
Not mentioned here is Dr Jenkins, London Endocrine Clinic. I was under his care for a while but I would NOT recommend him. He does not listen to you as a patient, was arrogant, and had little to offer in terms of practical help.
I saw Dr. Bansal once when I was trying out different consultants. He prescribed anti virals and directed me to the NHS website -where GET and CBT are recommended. (I skipped the antivirals) Given that, I'd avoid him at this point personally as we know GET and CBT are unhelpful if not dangerous.
If you are looking to source B12, after discussing with your consultant, I get mine from Oxford Biosciences and have learned to self inject https://oxfordbiosciences.com/ Happy to share more info on getting things in place if interested