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Dr Bansal consultation

godlovesatrier

Senior Member
Messages
2,568
Location
United Kingdom
Hey all,

So I saw dr bansal tonight, I had to wait six months. Got some interesting news to report. He IS prescribing valtrex to UK patients, not just me but someone else as well. I didn't even have to ask he just asked whether I'd taken it, I decided to be honest because I just wanted to finally speak to a competent doctor (this was my first time chatting to an ME specialist!).

After giving him my medical history and onset he said entereoviral infection straight away. Obviously he couldn't be certain and yet he was confident in what he said. So that was really interesting.

He's prescribed me Valtrex 1g per day (I didn't ask for a higher dose but that's because I have been taking this dose already and been doing really well with it, I've even been tolerating 2g a day and if I so chose I could always go a bit higher on my own). Valtrex I find helps brainfog, not immediatley takes a little while to work, but it does work. Also helped me recover from a bad bout of physical fatigue recently, and as of right now I haven't got any physical fatigue. But my PEM and PENE are still there and I still have only left the house twice in 8 weeks.

He's also giving me low dose doxycyclone, which I am really fascinated by. I am expecting I won't tolerate it very well, but with his guidance happy to persevere. Excited about this because it's an immune modulator + I might get a lot further if I am to take this + valtrex together. Natural immune modulators work but aren't perfect by a long shot.

He then recommended some natural supplements which I either hadn't tried before or had tried before and simply wanted to try again in a new form.

Nice to finally have a doctor!

I found out recently that the kidney pain I was experiencing on valtrex was due to taking vitamin c and magnesium 3x a day, so I was quite relieved to have this figured out. How do I know it's a kidney stone? Showed up on a CT sscan when I was having a particularly bad experience with the drug and as it turns out magnesium.

I've been taking valtrex for about 6 to 12 months, took it like candy when I moved house, max 1 to 2g per day. Really helped a lot in the summer months.

Hope this gives someone in the UK some hope!
 

hapl808

Senior Member
Messages
2,178
£250 for consultation
£150 for follow up.

That sounds very reasonable. Most of the docs I've talked to in the USA require at least US$600 for the first appointment plus a lot of expensive tests (some maybe covered by insurance) and then a few hundred for each follow up.

I've often wondered about trying Doxy again at low dosages. It helped me a lot in the past, but then not so much when I took it recently. But I was taking higher dosages. It's inhibition of collagenase and potential improvement in collagen production seems like it could be useful beyond being an immune modulator. What 'low dose' will you be taking?
 

godlovesatrier

Senior Member
Messages
2,568
Location
United Kingdom
Yep I agree. He's not expensive by comparison.

Also I might be able to get my insurance to cover half we will see, I forgot I had it and forgot to ring them...DOH!

As for the doxy I think he thought it would help microglial activation, probably based on a study he saw recently maybe. But we also discussed inflamation and I discussed how anti inflamatories appear to be settling my symptoms (in a protracted crash) very fast vs not taking them. These aren't standard anti inflamatories, they are more akin to celebrex.

Bansal is putting me on 50mg a day, not got a clue if that's split doses or all at once. But that's definitely the right dose. I am hopeful it will calm my immune response down a tad, which by all measure it is meant to do as it reduces cytokine expression for tnf-a, and IL6/il8 I think....
 

godlovesatrier

Senior Member
Messages
2,568
Location
United Kingdom
Hi all,

An update: prescription for valtrex 500mg a day would be the normal but I knew I tolerated more than that so 1g for 4 weeks then 500mg a day thereafter. After seeing Prusty's tweet I am not sure how efficacious higher doses really are, although would still love to see Valcyte used at lerners concentrations in a proper trial.

Doxycycline 50mg every other day, I guess 25mg a day would also be equivalent dosing...I may even go for that actually.

Then the usual suspects:
  1. q10 at 30 to 50mg a day which is far too low in my opinion, although we are all unique! I found out last year that mega dosing q10 by Solgar (no other brand works) buffers PEM and lasts for up to 8 hours in the summer. Mega dosing means 1 to 2g in a single dose with a fatty meal.
  2. l-carnitine 500mg a day
  3. PQQ 10mg a day with q10
  4. ENADA 5mg three times a day
  5. and magnesium 400mg a day (based oN joshua's research this is probably too much and will cause magnesium dumping)
  6. Beta-hydroxybutrate 1g per day up to 5 (I think this is for POTS tho....if I have researched it correctly)
(No mention of BCAA's which is a crying shame if you ask me).

Echniecia and ginseng every other day to boost NK cells and t cells. I take 5g reishi extract from life extension instead as I found a study showing that does exactly the same thing without over stimulation. But in the very early days I took ginseng every day and got huge benefit. Now it just gives me a raging sore throat.

B12 and luteolin 50mg a day.

Phenergan (for sleep?!) never heard of this but 10mg at night. I am sure someone here has tried it.
  1. NAC 600mg per day (I take 3.6g a day)
  2. Tocotrienol 30 to 50mg a day for 2 monts and then stop. Sounds like it improves ROS clearance.
  3. Dark chocolate (90%)
  4. Then he mentions DHEA which I have found to be absolutely vial to recover from certain activites and eradicate tonsilar swelling (tonsilitis onset) at the very start and even if it comes on acutely with ebv reactivation.
Interestingly he says DHEA stimulates the release of neuropeptides which I didn't know. Sadly if I take it every day I tend to feel a bit nauseous and my DHEA levels are fine which may explain it.

As I am a milder patient I believe that the above is put together with that in mind, so please take this into account!!

From the above list I will be trying luteolin (this might be my second time on that I cannot remember), he said it should improve my memory, which would be fantastic as it's just terrible, I regularly struggle to remember things and pre ME I didn't have it nearly this bad, so I know it's likely due to the ME. He did recommend a b12 nasal spray online, I really want to try this as an alternative way to get into my body. I need to research ENADA and see if it's NADH....not sure.

I'll let you know how I get on with the doxy.
 

godlovesatrier

Senior Member
Messages
2,568
Location
United Kingdom
Hi all,

I tried the doxy and it made me feel much much worse, even though I really do think it was having an anti inflamatory effect based on other anti inflamatories I've taken. But it basically made my cold symptoms that I had ten times worse and almost all of my old ME symptoms, dry mouth, breathlessness, fatigue, joint pain, joint stiffness and brainfog re-appeared. I doubt it was a herx as the dose is just so low.

I then found two papers showing doxy disrupts the ability of activated b cells to produce ig (m but also others like g) which could mean an already compromised immune system with lower than normal igg/igm would struggle even more. I might try it again though in the future.

As for the valtrex doing ok on that, I feel like it helps my thirst symptoms, as I don't seem to get as thirsty in the night and I am sure that's due to valtrex.

I seem to be in a december flare, with multiple viruses and colds, so my symptoms are worse than usual right now, but no different to 12 months ago. Although sore thraots and tonsillitis are now symptoms that I can treat and have under control. My tonsils swelled up with a virus four weeks ago - I took 50mg dhea and it reduced, another 25mg in the evening and it disappeared and never came back. This is rapid and marked reduction of tonsillar inflamation. Also I could feel famvir working deep in my tonsilar tissues back in March 2022 as I had very deep tonsillar pain. I think this was more due to immune modulation than anything else.

So that's my update!
 

godlovesatrier

Senior Member
Messages
2,568
Location
United Kingdom
Hi all,

Have been focussed on my microbiome since my last update. Managed to get it to healthy for the first time in feb 2023 (very bottom of healthy). If you read this study here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8761622/#B12 it explains a lot of abnormalities in ME patients vs controls, and the NIH correlated one of those with fatigue severity, most studies have been reproduced numerous times so these biomarkers are pretty reliable I think:

Higher levels of Enterococcus spp (16), Streptococcus spp (16, 163), lower levels of the beneficial Bifidobacteria (13, 154) and decreased anti-inflammatory Firmicutes (13, 14) have been detected. Enterobacteriaceae were increased in several studies (13, 16, 22). According to the metagenomic analysis by Nagy-Szakal and co-workers, specific bacterial taxa such as the Firmicutes phylum, and the Faecalibacterium, Roseburia and Clostridium genera were associated with ME/CFS. In particular an increase of Alistipes and a decrease of butyrate-producer Faecalibacterium were considered as top biomarkers with potential diagnostic value (12). Their finding of a higher abundance of the Clostridium genus contradicts the opposite results reported by Giloteaux and co-workers (12, 13). The lower abundance of Faecalibacterium was also replicated (13). A case report published by the same author compared ME/CFS-discordant monozygotic twins and also identified abundance of Bifidobacterium and Faecalibacterium to be reduced in the affected twin compared to the non-affected one in addition to lower gut alpha diversity (164). Interestingly, a reduction of Faecalibacterium was also found in IBD patients with fatigue (compared to IBD patients without fatigue) (165), cancer-related fatigue (compared to cancer patients with low fatigue) (166) and other autoimmune diseases such as MS (167, 168) and diabetes type 1 (169).

Several studies reported a reduction of a butyrate-producing Bacteroides species in ME/CFS (19). High-throughput 16S rRNA sequencing from stool samples revealed gut microbiome alterations that were consistent with an increased inflammation of the gut, namely significantly increased Lactonifactor and Alistipes (14).

One study with 48 patients and 52 controls identified 26 markers including bacterial taxa that were distinct for ME/CFS and healthy controls, respectively (170). Gut abundances of Coprobacillus, of Eggerthella and Blautia were best able to distinguish patients from controls. Decreases in Faecalibacterium (12) and increases in Coprobacillus were found and also seen in other previous studies, as discussed above (13). To evaluate the diagnostic potential of the markers, THE researchers separated patients into short-term and long-term duration of ME/CFS. They found that microbiome changes were much more prevalent during the short disease duration (≤ 3 years) compared to a long disease duration (> 3 years). The authors suggest that these microbial markers mirror temporary changes in the early disease stage and hence show potential for future biomarker application (170). Furthermore, a study comparing the microbiome composition of ME/CFS patients to acute Q-fever patients suffering from fatigue as well as healthy controls, found the microbial signature of ME/CFS and Q-fever to be quite similar, while both groups differed profoundly from healthy controls. ME/CFS and Q-fever fatigue syndrome patients further shared the same set of pro-inflammatory markers with which a differentiation of each patient group from healthy controls was possible. The abundance of Firmicutes and Actinobacteria was increase in ME/CF
I felt really good once I had reversed a lot of these biomarkers, I guess my fatigue was primarily the main symptom that got a lot better. (I had 50% statistically significant shifts in the major strains and phylums discussed above and those directly correlated with less inflammation, less fatigue and higher energy envelooe). But I did go through a period of 90% mental function as well, where I was able to do mentally intensive tasks at the weekend and after work, which is not something I can normally do. But even at work I was very stable and able to concentrate all day and didn't start crashing by the time I got to thursday (which is how I felt post covid and how I felt after my ebv crashes in 2022).

So I still think the valtrex is helping and convinced the life extension reishi works (works better if you take 12g per day I've noticed), I'm still taking 1g a day valtrex, but due to various set backs and the fact that I am extremely allergic to birch tree pollen I've had a bit of a set back I think in viral load. I found a study from 2020 that shows herpes viruses react in patients who are very allergic to birch tree pollen. I've had blood tests for this, also had it diagnosed by a doctor: https://onlinelibrary.wiley.com/doi/10.1111/all.14587

"Pollen induces reactivation of latent herpesvirus and differentially affects infected and uninfected murine macrophages"​

I also have asthma which apparently makes for a perfect trifector of diseases. Therefore I am convinced the reason I feel terrible in late March into the end of May is birch tree pollen.

Dr Bansal already told me to take clarityn twice a day for the doxy issues and I've been doing that, it helps with symptoms of hay fever but it doesn't do a thing for the fatigue. So I started taking q10 in the day and noticed my fatigue was much better controlled, normally q10 has no effect unless I take 1.5g, but this time I took 400mg and noticed a huge effect on both working memory and short term memory (these two have been bad for awhile and drive me mad) but I didn't have that issue taking q10.

At any rate my viral load must be high right now and I am still experiencing strange fatigue 60 minutes after eating food in my biceps and shoulders which I cannot explain at all, it also produces some brainfog. If anyone has any idea what is causing that I'd love to hear them. However my current theory my only theory really is that it's all due to birch tree pollen and the immune system is confused so resources are going to that instead of viral load + effecting energy production. It's a lot better if I take q10.

My next plan is to try and get the bcg vaccine to try and get into remission, I'll keep you posted, story here: I spoke to Adam who said that he did feel worse for 3 to 6 months after starting the vaccine, but then improved into a remission state: https://www.healthrising.org/blog/2023/03/30/adam-bcg-chronic-fatigue-syndrome-recovery/
 

godlovesatrier

Senior Member
Messages
2,568
Location
United Kingdom
Just another update to say that I got kidney stones repeatedly over the last 12 months but it was brief, lasting almost no time at all. Two weeks ago I had a bad bout and it's still not fully gone. I know they are kidney stones because I had a CT Scan which showed the stones. They are however very small, maybe only a milimeter, but enough to cause a lot of pressure and swelling in my back.

I realised anyway that as I have been improving my diet I have started adding more and more oxalates without realising it. Some days I was pushing 100mg, average was prob 75. So I've now rearranged my diet, sadly taking out tons of fibre, to get it back down to around 30mg.

On a side not oxalabacter formigenes that eats oxalate has been slowly going extinct in my gut over the last 3 years.

I've stopped valtrex and it makes the stones significantly worse, I tried 500mg again today but it didn'ta gree with me. It looks like my valtrex experiement has come to an end. Valtrex via a few pathways can increase uric acid which can cause uric acid stones, these are easy to try you just take 400 to 800mg potassium citrate twice a day your ph goes from say 6.2 to 7.5 and then the stones gradually dissolve. My urine PH is a bit acidic around 6.2 to 6.5 - not sure if this means anything - if anyone knows please let me know.

I've sadly had two appointments in a row cancelled with Bansal, but as I am a mild patient I have not been too upset. They have tried to send me new appointments but often they've been far in the future. Dr Bansal is swamped with patients, has no secretary and is no doubt snowed under. He may even be close to retirement so I am not really surprsied. He also doesn't charge much at all. He's helped me with work massively, so I am very grateful.

So that's my latest update, prob 60% recovered from my pfizer vaccine, but not fully better yet.
 

Mary

Moderator Resource
Messages
17,507
Location
Texas Hill Country
I found out last year that mega dosing q10 by Solgar (no other brand works) buffers PEM and lasts for up to 8 hours in the summer. Mega dosing means 1 to 2g in a single dose with a fatty meal.
@godlovesatrier - I bought some Solgar CoQ10 based on these two sentences and I think it is very good! Generally CoQ10 does next to nothing for me but this morning I have energy I have not had in several weeks, I think actually some months - can't remember how long it's been. I'm only taking 200 mg, not the dose to avoid PEM which I think would give me bad insomnia, though I'll keep that in mind for some time when I really want to do a lot - anyways something is making a real difference for me! I've also had a glass of grapefruit juice a couple of days in a row and that might be a factor too - someone posted on PR a few years ago that it enhances the effect of CoQ10, though I also learned that grapefruit juice can interfere somehow with B12, so one might need to up their B12 if drinking grapefruit juice.

How did you learn that only Solgar brand would buffer PEM? Just trial and error?

One other thing that might be helping with my energy is that I resumed taking Optimum Nutrition brand BCAAs. I had switched to a cheaper brand as ON had raised their price by over 50% - but unfortunately I started to backslide on the cheaper brand - crashes went up to 2 days when they'd been at 1 day for several years and in general did not feel as well.
 

godlovesatrier

Senior Member
Messages
2,568
Location
United Kingdom
We are so alike Mary it is weird. I almost feel like we're teh same subset.

Jaime got me onto Solgar mega dosing, she has no idea why it works and hte others do not. I take 1.8g if I am going to have a very demanding day.

you could try lake avenue from iherb, from memory that still worked ok for me. But yes on very demanding days I take bcaas. Sadly my kidneys have now started to form stones regularly and I haven't a clue why so I am struggling to take bcaas as they make the stones worse - doesn't matter how much I drink.
 

godlovesatrier

Senior Member
Messages
2,568
Location
United Kingdom
So there are about 4 to 6 types of stones @Judee

Calcium oxalate

Calcium Phosphate

Uric acid stones

cystine stones

and I believe the crystals from valtrex also promote stone formation over a long period of time, prob why I have got them. I am going for a scan on saturday so I'll keep you posted.
 

Mary

Moderator Resource
Messages
17,507
Location
Texas Hill Country
I almost feel like we're teh same subset.
I noticed in the past that we often had similar reactions to things!

Sorry to hear about the kidney stones - that's one thing I've never had to deal with . . . and if BCAAs caused kidney stones for me, I'd be in trouble! Because I have to take them to keep my crashes shorter and also I think they help with energy. Good luck with your scan, I hope you get some good information - :nerd:
 

godlovesatrier

Senior Member
Messages
2,568
Location
United Kingdom
When I say cause they just tax the kidneys and all that is an issue. Fairly sure I haven't damaged them as my egfr has only been in the seventies once in the last 3 years and that was due to Joshua's high protein diet.

I am off on holiday soon so I need my kidneys to be stone free! Think I passed one last night fingers crossed.
 
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