• 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, 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.

Success on Valacyclovir at 3.5 Months!! - Plus some Questions...

J

Janice Hargreaves

Messages
72
Location
UK
It is good to hear about progress and changes. Thank you Stephano75 and 2Cor.12:9.
I guess I am concerned that for sample sizes of 1 or 2 then statistical power and hence value maybe v low? My maths is not my strong part.

So for what it's worth........ I'm recovering from flu. In a weird way I think this was good.
I haven't had flu for over 15 yrs.?
In my unprofessional tin pot way I felt that the green gunk I coughed up was a good sign that my body was producing the needed immune response. From wiki it mentioned greeness is from the peroxidases produced by the white cells.

So although I am not recovered from ME I do feel some improvement in different ways, eg much reduced armpit throbs, much reduced heart palpitations although this still returns in minor way if I try too hard. And much reduced bone pain.

I haven't felt much energy return as yet but I'm trying very hard not to keep ignoring what my body trying to tell me.
I'm an optimist and feel that if I stop the crashes as much as possible my body has the best chance to get its self back in balance?

I'm working at slotting in two more 10 - 20 min horizontal sessions in the day since I really feel benefit of being vertical in about 4 hrs stretches, then topping up my battery by going horizontal in shut down mode with deep abdominal calm breathing and relaxing all muscles.

I'm wishing you all the very best of luck.
 
Binkie4

Binkie4

Senior Member
Messages
644
How long have you been on the antiviral@Janice Hargreaves? And which one? If you don't mind saying. Maybe acyclovir? My memory not good enough to be sure.



EDIT: I see you posted this info earlier. Apologies. I am curious because the heart issues I have are worsening and need surgery soon so it is hard to assess effects of acyclovir. I am very breathless and that is not improving but I think it is the heart. Good wishes anyway.
 
Last edited:
J

Janice Hargreaves

Messages
72
Location
UK
Binkie4 said:
How long have you been on the antiviral@Janice Hargreaves? And which one? If you don't mind saying. Maybe acyclovir? My memory not good enough to be sure.



EDIT: I see you posted this info earlier. Apologies. I am curious because the heart issues I have are worsening and need surgery soon so it is hard to assess effects of acyclovir. I am very breathless and that is not improving but I think it is the heart. Good wishes anyway.
Click to expand...


Thanks @Binkie4

All the best to you too.
 
S

stephano75

Messages
39
Hi @2Cor.12:9 - no, am not taking anything else. Re dosage - I was on the 1000mg for a couple of months and noticed benefits. I do think they (benefits) increased somewhat when I increased the dose. My doctor's experience is certainly that 2000mg sees people getting best results. Cheers, S.
 
el_squared

el_squared

Senior Member
Messages
127
Great news! I wanted to ask about what you said about "a brand" of generic Valtrex. Did you mean you switched to Valtrex, and not a generic? Or did you switch to a generic that worked better? I have recently begun taking generic Valtex made by Aurobindo.
Thanks!
 
Binkie4

Binkie4

Senior Member
Messages
644
Hi @Janice Hargreaves
Just to say that 9 months in, I have all my fingers crossed, but despite the heart, I believe there is some improvement. There would be more if I could get my sleep sorted out but pem seems less, breathlessness less, a bit less OI. I have put make up on twice in the last week so energy is a bit more. Cognitive function not yet improved. Am still lying flat most of the day but have tolerated two hospital admissions and emerged intact although I did have saline both times. Am afraid to be too hopeful but there seems to be a small group here who are responding. Good wishes all.
 
shannah

shannah

Senior Member
Messages
1,429
Binkie4 said:
Hi @Janice Hargreaves
Just to say that 9 months in, I have all my fingers crossed, but despite the heart, I believe there is some improvement. There would be more if I could get my sleep sorted out but pem seems less, breathlessness less, a bit less OI. I have put make up on twice in the last week so energy is a bit more. Cognitive function not yet improved. Am still lying flat most of the day but have tolerated two hospital admissions and emerged intact although I did have saline both times. Am afraid to be too hopeful but there seems to be a small group here who are responding. Good wishes all.
Click to expand...

Great signs @Binkie4
I so hope it continues for you.
I too have had to really search for those tiny improvements, barely noticeable, but still there!
 
B

bread.

Senior Member
Messages
499
hi,

and congratulations to your success!

Did you "just" tried it or did you have any bloodwork that has driven to in the direction of Valtrex? If so, which ones?

Thank you!

Christoph
 
J

Janice Hargreaves

Messages
72
Location
UK
I've been on Aciclovir since beginning of August 2017. I take 400mg 3 times a day. I also take daily ~ 250mg Beta hydroxybutyrate, vit D and B12 injection self administered every two weeks.
I feel that recurrent armpit throbs, shin bone aches, sore throats, and pains at sites of old injuries have all pretty much gone.
So the quality of my life has definitely improved although I haven't seen much energy increase .....yet.

I am an eternal optimist and feel that I am coming alive again however slowly. I can't help but feel excited....

I've started to use a heart rate monitor to stop me unknowingly tip into aerobic metabolism for too long........not too sure about this?
Problem is the cheap £30 monitor is not very reliable so am looking at getting maybe a Garmin. ?
I do tend to want to take the monitor off since it depressed me terrribly when I tried a few years ago, so I'm very aware of that problem.

I hope that may help?
Very good luck and warm wishes to all.
 
godlovesatrier

godlovesatrier

Senior Member
Messages
2,554
Location
United Kingdom
Hello there,

Does anyone know the full name of Dr Bansal in the UK? I have recently got positive test results for hhv1, coxsackie a7 and cmv. I also have lyme borrelia burg active infection - but I want to give the valtrex a try if I can find someone able to prescribe it.

I can see lots of Bansal's in the UK so I am unsure which one is the right one :) Unless it is Dr Amolak Bansal?

If anyone knows of any other private doctors who would prescribe and do bloods in the UK that would be great to know too.

Thanks in advance,
 
Binkie4

Binkie4

Senior Member
Messages
644
It is Dr Amolak Bansal. He sees his ME patients at St Anthony’s hospital, Cheam.
I understand that Dr Bansal is unwell at present: expected to return in Nov or Dec.
 
godlovesatrier

godlovesatrier

Senior Member
Messages
2,554
Location
United Kingdom
Ah Binkie. Yes he was off work. He came back last week but has not yet replied to my email. Oh well. My anti viral herbal treatment is in full swing anyway. I'm not herxing as much. But we will see if it works.

Not sure about the energy surge. I do know people that take pharma anti virals don't feel any different for 3 to 5 months after starting treatment.

Thank you for your links Hip. I had no idea.
 
Tella

Tella

Senior Member
Messages
397
hopeandsparkles said:
Hi Binkie4, Markie and Sb4, sorry for slow response. I actually found Phoenix Rising a little overwhelming to start with- so much to say, so much to read!

:)

Okay as to the monolaurin I really quite honestly have no clue. The only papers I have read have been the ones about antiviral suppression- Dr Lerner's papers and any bits and bobs that are lying around about how Dr Montoya's team are treating people. So... your guess is as good as mine- however, I imagine someone on here would be able to tell you, @sb4, if you started a thread about it or something...?

Shannah- I totally forget to mention that I am not on an anti-inflammatory- is that commonplace? It wasn't suggested in any of the literature so it never occurred to me.

@Binkie4 I simply followed the papers that are online by Dr Lerner- the man who pioneered this treatment. 4g daily was what he believed to be important. However, having read a few more threads on different parts of Phoenix Rising it seems that other people followed similar protocols- but many found it too, too much. Which is something I really relate to- I couldn't cope on 4g but 3g does seem to be working.

I honestly don't know whether your acyclovir was a generic or not- I guess if there is the name of a brand on the box then that would suggest it's not- generics generally don't have brands on the box. But in terms of other people working out which brand would give them fewer side effects- there are, again, a few different threads on this site that talk about antivirals- some of them mention some of the brands that Lerner/ Montoya favour which are meant to have fewer side effects but you'd have to scroll through yourselves.

The real truth is: we're all built so differently, you will only know by finding out. I was in a lot of discomfort on the generics which is why we decided to try a different one. In my case, I tried Ranbaxy and all the horrible side-effects stopped almost immediately and then all the miraculous gains I'd made by being on them revealed themselves- it was like a curtain being drawn- I could finally see the light!!

Yes- very, very true from all I've read that too many people give up too soon. However, whilst I can't say which brands will work for others- if you ARE able to start on one of the branded versions that are being talked about as 'kinder', or simply doing the acyclovir which sounds to have fewer side-effects, then it strikes me that most people will be less likely to quit. The difference for me personally between the generics and the Ranbaxy was huge- on the latter I couldn't cope, felt disgusting and miserable and on the latter feel human and whole and happy- barely as if I'm even on any drugs.

Hmm... I feel there was something else worth saying here, what was it? Oh yes! It was this: it seems that these tablets are proving quite the miracle cure for many, many people. However- the main disclaimer is this: however much you tell yourself at the beginning that you are prepared to grit your teeth and get through anything- after all the pain you've been in for so many years, etc. There's a HUGE difference between psyching yourself up to and actually being in the midst of nausea/ migraine/ cramps/ drowsiness/ etc. for months on end. I was full of how I could get through anything, having been through ME all these years and multiple severely demoralising, months-long viral crashes. They were horrendous in themselves. But having gone through this now I can truly understand why people quit too soon.

I also believe that if you're on a version of these tablets that doesn't suit you- it is likely to be entirely MASKING any improvements you may well be making.

I don't know if I've been much help here. I sort of feel it would be super great if those of us who've done these protocols could somehow put together a thread about the subtleties of it. Maybe I will do that next time? Do you think that would be good? There is no road map exactly as we are all going to react differently, but certain things I think definitely hold true about it. I might draft a bullet point list of tips and post it in a separate thread- what do you guys think?
Click to expand...
Hey how r u now??
 
You must log in or register to reply here.