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Doctors in and around London, UK

Seadragon

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@PracticingAcceptance, Not sure if this is the place to ask (moderators - feel free to move this to another thread if necessary) but how are you going with Dr Bansal's treatment ideas?

I haven't tried the Acyclovir (not convinced about reactivated viruses being the issue in my case) but I introduced B12/Carnitine and Luteolin one by one over the past few weeks.

Not sure if it's just placebo or coincidence but I definitely feel a positive difference and have had a few much better days. Too early to tell yet if it will be sustained or if is just some kind of temporary effect/temporary "boost" to my system.

I also will be introducing CoQ10 and PQQ over the next couple of weeks.

The NAC he recommended seemed to make me feel more fatigued overall and heavy headed so I will ask him about that at my follow up appointment next year - leaving it out for now.

Did he tell you what Luteolin is supposed to do? I forgot what he explained about that particular supplement.

PS Re your liver test, it might be worth reading the leaflet in the Acyclovir pack to see if high liver enzymes could be a side effect. It could also just be a blip as you say - good that you are getting re-tested and further tests though just in case.
 
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@Seadragon I've had sustained improvement but I think it's levelled off in a plateau now. Or maybe I've been doing too much which is stopping me from progressing... in any case, I can do more than I could do a few months ago before seeing Dr Bansal. I'm sure it's down to the acyclovir or supplements or both. I haven't been able to figure out which supplements are having the positive effect - I only staggered starting them by a week each, which isn't enough to see the difference with some of them.

I'm really really glad that you're seeing some positive differences - I really hope that continues :D
Not a waste of time to see him then in the end, right? :)

I don't know about luteolin, I remember that it's in celery, that's it. I remember that he wrote it down rather than it being on the sheet already, so that gave me the impression he recommended it based on a specific symptom I mentioned, but honestly I didn't understand a lot of what happened in that appointment, he communicates in a style that isn't familiar to me.

3 doctors have said that high liver enzymes are not a likely side effect of Acyclovir including Dr Bansal. ....gosh darn it, I had a look, and it IS a side effect listed in the leaflet - 1 in a 1000 people have that as a side effect. Hmm. Well, got blood tests booked this week, shall see a dr the week after that, and if there's still no clarity maybe I'll have to try coming off the acyclovir :( really sad, I hope that it's mainly the supplements that have been helping rather than the acyclovir.
 

andyguitar

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I hope that it's mainly the supplements that have been helping rather than the acyclovir.
If I remember correctly you have been taking Melatonin. If so then I would say it's the most likely thing to have helped.
3 doctors have said that high liver enzymes are not a likely side effect of Acyclovir
The word 'likely' should be taken with a pinch of salt. 1 in a 1000 chance of it being the cause sound quite high to me.
 

Binkie4

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I see Dr Bansal and take acyclovir prescribed by GP on Dr B’s recommendation. Have been taking luteolin for several months - I think it’s to help with cognitive function - but I haven’t noticed any improvement. I also take CoQ10/PQQ and acetylL carnitine and D ribose. I think these may be supporting energy.
I find Dr Bansal approachable and knowledgeable. He was very supportive in writing letters to recommend saline when I needed GA. He works empirically not via lots of testing. He has never recommended CBT or GET.
 

Seadragon

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I see Dr Bansal and take acyclovir prescribed by GP on Dr B’s recommendation. Have been taking luteolin for several months - I think it’s to help with cognitive function - but I haven’t noticed any improvement. I also take CoQ10/PQQ and acetylL carnitine and D ribose. I think these may be supporting energy.
I find Dr Bansal approachable and knowledgeable. He was very supportive in writing letters to recommend saline when I needed GA. He works empirically not via lots of testing. He has never recommended CBT or GET.
@Binkie4

Do you feel that Acyclovir has helped you? Any side effects?
 
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I saw Dr Bansal Sep'17 and he prescribed Acyclovir which I have been taking ever since via my GP. I think there has been some marginal benefit in managing my symptoms which did also worsen when I decided to stop taking it for a few days. I haven't noticed any side effects. Like @PracticingAcceptance I've had some abnormal liver function tests but these started before I comenced acyclovir and after 2 years how now returned to just within normal limits. My understanding is that he prescribed acyclovir because my symptoms were mostly related to constant immune activation, a possible EBV reactivation or some unknown virus (he said there are 1000's) so an antiviral might help.
 

Binkie4

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Initially I had awful side effects from acyclovir, namely 5-6 weeks of severe nausea, exhaustion. That cleared. It’s hard to say whether there is an improvement because I have developed comorbidities eg heart problems and it’s hard to disentangle. I will continue a while longer because there may be. My GP is prescribing it.
I had serological evidence of past EBV infection.
 
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I also had past EBV infection.

Interesting to hear other people on a parallel journey to me with Dr Bansal and acyclovir :)

If I remember correctly you have been taking Melatonin. If so then I would say it's the most likely thing to have helped.
Only taken it about 6 times in 5 months... so it's probably not that, haha. But impressed you remember that sort of detail.

1 in 1000 is not 'likely' but it's possible... I'm keeping this in mind.

I've had some abnormal liver function tests but these started before I comenced acyclovir and after 2 years how now returned to just within normal limits.
Did you ever find out the cause of the abnormal liver tests? Did they just get back to normal on their own?
 
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@PracticingAcceptance The jury is still out on the cause of the liver tests. I had a liver biopsy which revealed some granuloma. They have tested for sarcoidosis as that is a common cause of these but no evidence of it elsewhere. Probably just a consequence of an constant overactive-immune response. I started drinking black coffee instead of tea in the mornings and that could be a factor in the improvement as I read its kind to the liver and also anti-infammatory. I don't have sleep issues so the caffiene's not a problem. Does your liver often feel swollen/sore? If it's particularly uncomfortable I found that milk thistle helped.
 
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@Mtb1966 I had to look up some of those words. Sarcoidosis sounds scary. I have to avoid caffeine, sleep is only a problem when I do consume caffeine plus a couple of other factors.

I can't feel my liver... I don't have any pain symptoms for my liver. But I've heard about milk thistle, I shall keep it in mind, thank you.

Very mysterious, our bodies, aren't they? In any case I'm so glad the results are good now for you :)
 

Seadragon

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Thanks @PracticingAcceptance and @Binkie4 for sharing your experiences with Dr Bansal and his approach.

I'm sticking to the supplements for now - introducing PQQ and CoQ10 next week.

Too early to tell but I have definitely has a few very slightly better days recently - not sure if this will be sustained or is just a lucky blip. Time will tell I guess. :)
 

Tella

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Initially I had awful side effects from acyclovir, namely 5-6 weeks of severe nausea, exhaustion. That cleared. It’s hard to say whether there is an improvement because I have developed comorbidities eg heart problems and it’s hard to disentangle. I will continue a while longer because there may be. My GP is prescribing it.
I had serological evidence of past EBV infection.
Are u in the UK? I’m surprised any GP would follow the recommendation as their guideline says don’t prescribe it for ME. Is that the diagnosis he wrote to the GP in the letter? Also I wonder why he doesn’t prescribe Valacyclovir as it’s more potent and helpful it seems from the studies of dr Lerner etc
 
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I’m interested to know if Dr Bansal still recommends CBT/ GET, now that he is no longer operating under the auspices of the NHS.

I had similar experiences with Dr Bansal except this it was on the NHS and I was on the phone. He very much has a CBT approach and was directing me to the info on their nhs website.
 
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I’m sorry to hear Dr Bansal is planning to retire completely in a few years time, even from his private practice. Is this something he said or your reading between the lines?

I had a few appointments with Dr Bansal on the NHS, and his letters to my GP were always very helpful and informative. Left to his own devices I fear my GP would have taken me for a ride into the MUS wilderness.


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.
 

Sarah94

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I’m interested to know if Dr Bansal still recommends CBT/ GET, now that he is no longer operating under the auspices of the NHS.
He's a bit unpredictable. Sometimes he gives advice which is sort of a bit like GET and/or CBT. But also recommends biomedical stuff and will prescribe some things.
 
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I’m sorry to hear Dr Bansal is planning to retire completely in a few years time, even from his private practice. Is this something he said or your reading between the lines?
I asked, he said it would be a few years til he retires from his private practice. He said it in a vague way but that was the meaning I got from it. I found it difficult to understand his communication style, he and I are from different planets. I'm not a scientist.