Doctors in and around London, UK

[Countrygirl]

any more info on the patient who did well on Biktarvy? Is that the guy in Paris whose twitter handle is Layke?

He is doing extremely well and is 95+% well. He has also found a newer ARV which is even more effective.

 

[Jenny]

@PracticingAcceptance I was referred to Dr Chee, an immunologist at the Royal Free in London, by Gabrielle Murphy at the so- called Fatigue Clinic. He did a lot of non-standard tests, and we tried all sorts of treatments including B12 injections, and long-term Valtrex. He was also prepared to look at papers I brought him and discuss the field.

All this was on the NHS.

This was about 10 years ago though and I don’t know if he’s still there.

BTW nothing made any difference.

 

[Countrygirl]

what's the newer ARV? @Countrygirl
is this person posting anywhere?
where is he getting the drugs..who is prescribing..who is paying.

He was banned from here under the 'old' regime, but we have been in close contact for nine years as we had our blood tested flown out to Dr Ruscetti at the same time for RV testing. (you no doubt know the lurid story of the shenanigans and the cruel and unjust actions that silenced the work.)

To be honest, I am not sure I should say who or where is supplying the medications as there has been some unpleasant opposition towards patients being treated. Doctors need to be protected.

I don't have the latest med to hand, but, hopefully, it is still in my email. When I have time, I will take a look for you. I know there was an article on it very recently on the internet on a NHS website as I think it is only quite recently available.

 

[PracticingAcceptance]

@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.

 

[Countrygirl]

@Countrygirl it's fantastic you have made this set up where people can be seen in your home. Whereabouts do you live?

.

Yer us be @PracticingAcceptance The SW clinic for ME

(This is how we speak. )

Yer us be again.

 

[andyguitar]

Cake therapy. I like it.

 

[Moof]

@PracticingAcceptance, if you're not needle phobic and want to try B12 injections, they're very easy to do yourself. I need them because I can't absorb it from food; I can't get them as often as I need them on the NHS, so I got a friend with T1 diabetes to train me up. I do subcutaneous injections into tummy fat, and it's so easy that it doesn't really need any training, just an understanding of good aseptic practice. Another friend found some really helpful videos on YouTube when she started.

If you want, I can signpost you to a reliable supplier of injectable B12 in Germany, and you can buy everything else you need very cheaply from Medisave in the UK. I've got a list of the bits and bobs that I put together for my friend. As @Hip says, there are transdermal oils that work for some people – I just stuck with the injections because that way I know I'll definitely get enough of the vitamin. (Symptoms of severe B12 deficiency are hideous and some are irreversible, so I never want to risk going back there again!)

 

[Seadragon]

Thanks @Countrygirl I am currently living in the South East, though originally from Devon and I miss all those things you talk about! I'm hoping to move back down that way within the next few years or so when finances allow!

I am going to try to see either Dr Weir or Dr Bansal in London.

I just need to be well enough to physically attend an appointment and come across coherently first!

Dr Weir sounds really kind though. People all seem to speak highly of him and even just the support of a knowledgeable doctor would be helpful, as my GP is not very interested in me and does not believe I am very ill.

 

[Seadragon]

@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.

@PracticingAcceptance Your GP should be able to prescribe Acyclovir if Dr Bansal has recommended it.

My GP was willing to prescribe me Acyclovir once when I asked her about it at a time when others here were discussing anti-virals a few years ago.

I never tried it in the end as I am very sensitive to new meds and was too nervous of potential side effects as well as not having expert guidance on dosages recommended for ME!

Will be interested in your detailed version of your appt with Dr Bansal when you get round to it.

 

[PracticingAcceptance]

@Seadragon here it is:
https://forums.phoenixrising.me/blogs/initial-appointment-with-dr-bansal.2571/
Any questions I can help with, let me know.

@Moof please do tell me where you get your stuff. Dr Bansal recommended b12 patches for now, but I'm guessing I might graduate to injections at some point. I have a spreadsheet where I log all the recommendations people give me.

@Countrygirl that is HILARIOUS. Is she for real? I feel like she must have inspired Derry Girls and Catherine Tate. Omg that story CANNOT be true about the eggs!!
Devonshire is pretty far away from me, but I am really glad you've got a clinic going there. There are not enough specialists to go round.

 

[Moof]

Here you go, @PracticingAcceptance]:

Hydroxocobalamin
Vitamin B12 in injectable form. Until Brexit, no customs charges for UK buyers.

10 ampoules:
https://www.versandapo.de/vitamin-b12-depot-rotexmedica-injektionsloesung-10x1ml-pzn-03862297

100 ampoules:
https://www.versandapo.de/vitamin-b12-depot-rotexmedica-injektionsloesung-100x1ml-pzn-03862305

Alcohol swabs
To clean glass ampoule before breaking, and to clean injection site prior to jab (use a fresh swab for each).
https://www.medisave.co.uk/robinsons-ipa-alcohol-preinjection-swabs-pack-100-p-100930.html

2ml sterile syringe
To use with 1ml ampoules (less fiddly than 1ml syringes, though it’s fine to use these too)
https://www.medisave.co.uk/bd-discardit-2ml-concentric-tip-syringe-2-piece-box-of-100.html

Blunt fill needles
For drawing up injection (insulin needles are too short to reach the bottom of the ampoule)
https://www.medisave.co.uk/sol-m-blunt-fill-needle-18g-x11-2-box-100.html

Extra-fine short insulin needles
For injecting B12 subcutaneously; longer needles are needed for intramuscular injections
https://www.medisave.co.uk/terumo-agani-needle-30g-yellow-x-1-5-x-100.html

Spot plasters
To cover skin after injection (not essential)
https://www.medisave.co.uk/dependaplast-washproof-spot-plasters-22cm-box-of-100-p-102090.html

Sharps bins
For disposal of contaminated needles and swabs; see the various sizes to fit available storage space (check with your local authority for disposal of filled bins)
https://www.medisave.co.uk/search/?q=sharps+bin

 

[PracticingAcceptance]

Wow @Moof , that's so useful! Thank you so so much

 

[Seadragon]

@PracticingAcceptance Was wondering if you felt disappointed that Dr Bansal didn't feel more thorough tests were necessary seeing as his background is Immunology.

Have you had all the basic necessary tests done by your GP including Autoimmunity screen to include ANA, Full blood counts, Liver and Kidney function etc? Did Dr Bansal check what tests you have had done already?

I have an appt scheduled with him for September but was hoping for more in depth tests. My ME, if it is even ME, is quite a complex case with a lot of symptoms that don't seem to fit the picture or that of any other illness for that matter. Not sure it is worth the effort of going now

Having read that he offered you a list of supplements and a trial of Acyclovir only, I find that a bit discouraging.
Did he have any other ideas up his sleeve (treatment wise) if Acyclovir does not have any helpful effect?

 

[PracticingAcceptance]

@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.

 

[crypt0cu1t]

Does anyone know of an MECFS specialist near Birmingham? My girlfriend is having the hardest time finding a doctor to take her seriously.

 

[rainbowbluebells]

Hi @Seadragon

He is not at the moment using ARVS although I know some who are continuing with them, but everyone's needs are different, of course. What I can say is that Dr Weir tailors his treatment and recommendations according to your individual need and is excellent at providing support., especially if you do not have an educated doctor, and they are as rare as hen's teeth.

He is running his SW clinic from my house again in less than two weeks to be closely followed by Dr Speight who will be here after I have had two-weeks crash time.)

If you would like to see either doctor please contact me as the plan is that these clinics will be held a few times a year.

Dr Weir charges half-price if you see him at my house. And, of course, you will see part of the most beautiful part of England. Good food, cream teas, (jam on top, naturally, ...the Cornish still get it wrong )beautiful scenery, moorland, sand, sea and blue skies (well, blue skies may be a bit of an exaggeration at times) and scrumpy ( I am reliably informed it is the dead rodents left to float in the vat that gives it that certain je ne sais quoi........you must try it if you come here........it is an unforgettable experience) with two of the best doctors in the UK thrown in What more could you want?

Hi, I would like to see Dr Weir please. I’ll PM you.

 

[rainbowbluebells]

Does anyone know of an MECFS specialist near Birmingham? My girlfriend is having the hardest time finding a doctor to take her seriously.

Please contact the ME trust.

They have been helping me and are so wonderful and kind and have bursaries if you are unable to pay the costs as well (eg for home visits as they are pricier).



https://www.metrust.org.uk/

 

[Jenc]

@PracticingAcceptance 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

 

[Sarah94]

@PracticingAcceptance
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.

How long ago was this?

 

[Jenc]

@Sarah94 - I saw Bansal in april 2018. Not sure if his approach has changed since