Alternative to acyclovir (bad reaction)

[Zahr82]

I get the impression Bansal is a really lovely doctor but really isn't very sure of what he's doing. Now I could be wrong but based on the supplements he tells patients to take I don't think I am.

His doses are a bit low and I know he's getting patients to inject sub q hydrox b12. Which is an utter waste of time. I tried telling someone this on twitter and they got annoyed with me...so much for trying to help. Anyway it bothers me greatly that he's doing this. Because hydrox is a total waste of time and it irks me!! Also I don't think he tells you to take methyl folate as well right? Patients might get away without it but they may not. We have massive threads on this on PR forum if you want more info those would be ideal to read. Fredds b12 protocol thread is prob 50 pages long.

Sadly I can't remember what else he gets people to take. But I remember feeling it wasn't that great. The ldn is a good idea but in my personal case I had a awful reaction to ldn. Apart from immune effects I wonder if it's simply calming the hpa axis down more than anything.

As for antivirals he won't prescribe valtrex or famvir becuase he's worried about the effects and prob doesn't want to be struck off the medical register. You have to remember that the medical establishment in the UK doesn't really permit doctors to really help patients even privately. So he'd be kind of screwed if he used (in my opinion) the correct drugs like valtrex, tenofovir, valcyte or famvir. To hit different viruses. But he can't because he'll loose his license.

Dr Weir I know no longer prescribes tenofovir but that's because he couldn't figure out which patients to give it to.

Acloyvir is a very sub prime antiviral. We've got no record of anyone ever going into remission on it and I'm not even sure they got much better on it? @Hip can correct me if I'm out of line here.

Bansal is as I say a lovely doctor. He's taken my emails and given me advise without taking a dime. I'm just not sure he either understands or is actually able to (UK problem) do what is most up to date for the patient.

Comprehensive immune cd4/8/56 etc, igg and viral and bacterial pathogenic panel testing would be a good starting point to understand what issues the patient actually has. So the patient gets the right diagnosis and/or treatment.

I know I'm ranting a bit but it irks me massively that this is the best we have in the UK.

No , I totally understand. I think he's given me a pretty good supplement regiment as it seems to be giving me some more energy already. But yeah, I don't know about the reactivations thing. I remember even before I got ill, I would have sporadic "" ill feelings ,which would coke and go"" im totally cool with ordering stuff offline if they won't prescribe it. I'm on a b12 patch once a week. Not sure what type. Pqq, q10, nac, cystesein, and enada nadh plus

 

[godlovesatrier]

Ok so here's what I take. I'll try and explain what they all do and include costs. Hopefully you'll find some of the info useful:

Probiotics - solaray 24 strain and Dr mercola complete probiotics - repopulates lacto baccilus which is poorly lacking in most ME patients - £60 a month - also helps to control histamine levels and it increases energy for me by a large measure. Prevents all my IBS symptoms if I take one of each in the AM

Liposomal glutathione - pure health brand only + £50 a month - lowers oxidative stress, calms neuro inflamation, enhances cognition due to the tiny bit of phosphydyl choline, supplements lactoferrin for iron absorption and moldenyum. Binds mercury and other heavy metals. 1ml per day.

Omega 3 - calms microglial activation, enhances lipid profiles, usually stops me crashing too. 3000mg fish oil per day.

Then this lot in the am:
400uq vitamin E (lowers prolactin, lowers oxidative stress levels, scientifically shown to be very low in ME patients)

Magnesium malate 1 capsule. Sickness depletes malic acid - so replenishing it each day is a good idea. 120mg elemental magnesium per cap. Vital this stuff. Buy it from iherb.

Magnesium ascorbate - lowers oxidative stress, enhances ATP production, reduced muscular fatigue. 1 X 1g capsule is 800mg vitamin c and 80mg magnesium.

NAC 600 to 1200mg - raises immune cell function nk cells I think but only when taking 3g per day in 3 split doses. Blocks some entereoviral infections from easily replicating. Enhances red blood cells (I forget how sorry) and blood/clotting status. Supposedly vital for mitochondrial cells. Cort Johnson has a huge article on it. Enhanced delivery of oxygen to blood cells. I notice a big impact from this stuff now when I take it and I'm not feeling quite right.

Lysine - mainly to keep hsv at bay. 1g 3 x a day.

Reishi extract - mitochondrial protective - stops me from crashing brutally. On the 4th day of taking this you might crash but persevere as the crash won't last long. A week or two at most. Kicks the immune system into gear. 1300mg (3 caps) 3 x a day. Cost is about £100 a month. Only buy life extension reishi extract. All the other brands are primarily counterfeight. This will help your immune system as has been shown to enhance apoptosis of ebv cells.

Then at 12 and 5pm

Reishi, nac, lysine, mag ascorbate. In the aforementioned doses.

Finally
5g glycine, 200mg actyle choline, 250mg panthenic acid. To assist your adrenal glands. To enhance glycosis so that the dysfunctional glycosis can be augmented. Basically your muscles when fatigued recover quicker from exercise with this. Glycine is also very good for your kidneys and liver as is the NAC. And Dr Goldstein recommended glycine back in the 80s for all his ME patients. 3 x a day.

I think that's it. It costs a small fortune but I did notice benefits within about 3 weeks. All the way up to 3 months. I still get the benefit now it's just I can't get anymore out of it.

It increased my level of function by 15%. Which is a lot really.

Hope the info is useful. Oxidative stress levels are very high in ME patients. Hence why taking lots of OS scavengers is useful.

 

[Zahr82]

Ok so here's what I take. I'll try and explain what they all do and include costs. Hopefully you'll find some of the info useful:

Probiotics - solaray 24 strain and Dr mercola complete probiotics - repopulates lacto baccilus which is poorly lacking in most ME patients - £60 a month - also helps to control histamine levels and it increases energy for me by a large measure. Prevents all my IBS symptoms if I take one of each in the AM

Liposomal glutathione - pure health brand only + £50 a month - lowers oxidative stress, calms neuro inflamation, enhances cognition due to the tiny bit of phosphydyl choline, supplements lactoferrin for iron absorption and moldenyum. Binds mercury and other heavy metals. 1ml per day.

Omega 3 - calms microglial activation, enhances lipid profiles, usually stops me crashing too. 3000mg fish oil per day.

Then this lot in the am:
400uq vitamin E (lowers prolactin, lowers oxidative stress levels, scientifically shown to be very low in ME patients)

Magnesium malate 1 capsule. Sickness depletes malic acid - so replenishing it each day is a good idea. 120mg elemental magnesium per cap. Vital this stuff. Buy it from iherb.

Magnesium ascorbate - lowers oxidative stress, enhances ATP production, reduced muscular fatigue. 1 X 1g capsule is 800mg vitamin c and 80mg magnesium.

NAC 600 to 1200mg - raises immune cell function nk cells I think but only when taking 3g per day in 3 split doses. Blocks some entereoviral infections from easily replicating. Enhances red blood cells (I forget how sorry) and blood/clotting status. Supposedly vital for mitochondrial cells. Cort Johnson has a huge article on it. Enhanced delivery of oxygen to blood cells. I notice a big impact from this stuff now when I take it and I'm not feeling quite right.

Lysine - mainly to keep hsv at bay. 1g 3 x a day.

Reishi extract - mitochondrial protective - stops me from crashing brutally. On the 4th day of taking this you might crash but persevere as the crash won't last long. A week or two at most. Kicks the immune system into gear. 1300mg (3 caps) 3 x a day. Cost is about £100 a month. Only buy life extension reishi extract. All the other brands are primarily counterfeight. This will help your immune system as has been shown to enhance apoptosis of ebv cells.

Then at 12 and 5pm

Reishi, nac, lysine, mag ascorbate. In the aforementioned doses.

Finally
5g glycine, 200mg actyle choline, 250mg panthenic acid. To assist your adrenal glands. To enhance glycosis so that the dysfunctional glycosis can be augmented. Basically your muscles when fatigued recover quicker from exercise with this. Glycine is also very good for your kidneys and liver as is the NAC. And Dr Goldstein recommended glycine back in the 80s for all his ME patients. 3 x a day.

I think that's it. It costs a small fortune but I did notice benefits within about 3 weeks. All the way up to 3 months. I still get the benefit now it's just I can't get anymore out of it.

It increased my level of function by 15%. Which is a lot really.

Hope the info is useful. Oxidative stress levels are very high in ME patients. Hence why taking lots of OS scavengers is useful.

Thats a really good stack. He said he's targeting my hypothalamus and thymus, nerve damage. So I think he chose mine to help with that. Il pm you anyway

 

[Zahr82]

Thats a really good stack. He said he's targeting my hypothalamus and thymus, nerve damage. So I think he chose mine to help with that. Il pm you anyway

Thanks for that. Theres allot I want to buy from there, bit I've just spent 120 quid on supps lol

 

[godlovesatrier]

If you can afford even half I highly recommend it. Please bare in mind you're not going to feel better straight away. I'd suggest a 3 week sickness period with improve in week 3 before ditching stuff

Everyone is different though, in an ideal world you'd try one supp first for reactions and then move on, it really depends how reactive you are to stuff, most of us are (maybe 70%) but some are not.

Be mindful that nac chelates zinc and I think (based on blood tests Iron levels). So if you're a woman that could be very problematic. I've noticed taking lactoferrin will get my iron levels back to normal. I'm a man so they had been rock solid for decades, but yes - not anymore! So one to be careful of.

 

[Zahr82]

If you can afford even half I highly recommend it. Please bare in mind you're not going to feel better straight away. I'd suggest a 3 week sickness period with improve in week 3 before ditching stuff

Everyone is different though, in an ideal world you'd try one supp first for reactions and then move on, it really depends how reactive you are to stuff, most of us are (maybe 70%) but some are not.

Be mindful that nac chelates zinc and I think (based on blood tests Iron levels). So if you're a woman that could be very problematic. I've noticed taking lactoferrin will get my iron levels back to normal. I'm a man so they had been rock solid for decades, but yes - not anymore! So one to be careful of.

Yes, have they improved youre functionality in general? I've basically started mine all at once. But early signs are good. I've been using the cumin someone else was talking about here. I had a busier day than the average healthy person yesterday. No problems, except for slightly numb legs, which always creeps me out tbh

 

[godlovesatrier]

Yep 15% to 25% improvement in function.

But I was taking oat bran 1 tablespoon in the AM and that's generally what gets me to 25%. Howevefr due to neutropenia and incredibly high prolactin secretion and possibly effects on 5-ar and other male hormones, I don't think it's worthit anymore. So 15% is more accurate these days.

But 12 months between 15 and 25% is amazing if you ask me.

Everything has improved a different symptom. But I couldn't look up at the sky without difficulty, severe dizziness and terrible neck ache. Now I can look up and the only symptom I have to deal with is light sensitivity.

It's changed my life to be honest, I was moderate to mild, housebound going out once a fortnight beforehand. Breathless all the time, terrible swelling at the base of my skull and occipital lymph nodes. Also all my joints hurt and I had to move slowly all the time. That's all a thing of the past. Also chronic ulcers every 3 weeks are gone. Gums are much healthier too. Chronic sore throat is gone, it did come back in February due to stress, valtrex got rid of it within 6 days. I still take valtrex occasionally as it's the only drug that seems to really have a big impact on some of my more acute viral symptoms.

I haven't written a thread about it quite yet, mainly because many people ahve tried what I've tried and got nowhere, but we're all unique. We have to figure out what is wrong with us. There are many many mis diagnoses. I think I suffer mainly with EBV and HPA hormone dysfunction (the latter since I was a teenager).

 

[Zahr82]

Yep 15% to 25% improvement in function.

But I was taking oat bran 1 tablespoon in the AM and that's generally what gets me to 25%. Howevefr due to neutropenia and incredibly high prolactin secretion and possibly effects on 5-ar and other male hormones, I don't think it's worthit anymore. So 15% is more accurate these days.

But 12 months between 15 and 25% is amazing if you ask me.

Everything has improved a different symptom. But I couldn't look up at the sky without difficulty, severe dizziness and terrible neck ache. Now I can look up and the only symptom I have to deal with is light sensitivity.

It's changed my life to be honest, I was moderate to mild, housebound going out once a fortnight beforehand. Breathless all the time, terrible swelling at the base of my skull and occipital lymph nodes. Also all my joints hurt and I had to move slowly all the time. That's all a thing of the past. Also chronic ulcers every 3 weeks are gone. Gums are much healthier too. Chronic sore throat is gone, it did come back in February due to stress, valtrex got rid of it within 6 days. I still take valtrex occasionally as it's the only drug that seems to really have a big impact on some of my more acute viral symptoms.

I haven't written a thread about it quite yet, mainly because many people ahve tried what I've tried and got nowhere, but we're all unique. We have to figure out what is wrong with us. There are many many mis diagnoses. I think I suffer mainly with EBV and HPA hormone dysfunction (the latter since I was a teenager).

Thats brilliant to hear such an improvement. I'm sure o suffering hpa dysfunction before this,as I always felt numb and slightly depressed, aswell as susceptible to picking bugs up, and sporadic sire throats, probably reactivations tbh

 

[godlovesatrier]

The improvement wasn't from the antivirals either. It's just that due to neutropenia and my sore thraot coming back, I needed something heavy hitting for the ebv. Valtrex worked. But my kidneys hate it, I'm sat here now with kidney ache, currently moving house and starting a new job combined together has caused an acute reactivation. Got it under control now. Wrote another thread about that. I'd be lost without valtrex for these acute episodes, that's really the only time I take it now. I never take famvir unless it's to keep me awake when I am doing long distance drives. As it works very well for this!

 

[Zahr82]

The improvement wasn't from the antivirals either. It's just that due to neutropenia and my sore thraot coming back, I needed something heavy hitting for the ebv. Valtrex worked. But my kidneys hate it, I'm sat here now with kidney ache, currently moving house and starting a new job combined together has caused an acute reactivation. Got it under control now. Wrote another thread about that. I'd be lost without valtrex for these acute episodes, that's really the only time I take it now. I never take famvir unless it's to keep me awake when I am doing long distance drives. As it works very well for this!

I had left kidney ache just one day of acyclovir

 

[godlovesatrier]

Lucky I ended up in A&E because it got so bad I was really very concerned about damage or infection. i think it's renal calculi tbh, Bansal said he's never seen it, but now you're telling me this I am wondering if that's not completely true. Back ache in the flank could be thought of as a back issue and you're GP will tell you that, so maybe he's never heard a patient say anything.

 

[Zahr82]

Lucky I ended up in A&E because it got so bad I was really very concerned about damage or infection. i think it's renal calculi tbh, Bansal said he's never seen it, but now you're telling me this I am wondering if that's not completely true. Back ache in the flank could be thought of as a back issue and you're GP will tell you that, so maybe he's never heard a patient say anything.

Jeez, if you went to A and E . So if those pains go away, do you think any damage is left?. I mean I think the reason he uses aclicovir, is because its safer than the others

 

[godlovesatrier]

Assuming my blood tests this month are fine. No I don't think it causes damage if you catch it early enough and b stop the offending medication. Ache is probably fine. Pain not so much.

And I'm convinced in my case that it's renal calculi in the kidney. Becuase the a&e doctor found calculi in the left kidney. It was tiny but if it was lodged higher up in the kidney it could cause aching. I take a lot of supplements and I think that means if there is an issue I'm extra sensitive.

Also I've tried taking valtrex without supps. Doesn't make any difference.

 

[Zahr82]

Assuming my blood tests this month are fine. No I don't think it causes damage if you catch it early enough and b stop the offending medication. Ache is probably fine. Pain not so much.

And I'm convinced in my case that it's renal calculi in the kidney. Becuase the a&e doctor found calculi in the left kidney. It was tiny but if it was lodged higher up in the kidney it could cause aching. I take a lot of supplements and I think that means if there is an issue I'm extra sensitive.

Also I've tried taking valtrex without supps. Doesn't make any difference.

Yeah, messing with the kidneys is a risky business.. Dr Bansal has told me to start with half a pill and work my way up. Il see how that goes. And yes, it was a pain I was feeling id say

 

[godlovesatrier]

Acylovir deposits crystals inside the kidney. Dr Bansal SHOULD be telling you to drink an 8oz glass of water with the medication. If he isn't that isn't great news.

Anyway drink lots with it. But the pain could be from the kidney swelling due to the crystals blocking the small pipes in the kidney. This can cause the outer kidney to swell up. But kidney pain is a tricky one to get right. Just be careful and yes take it slow.

I've no idea why my kidneys do this. Maybe it's an anatomical problem. Where the tubes in my kidneys are a bit narrow (narrower than the average) I expect nobody's ever looked .

 

[godlovesatrier]

Booked with Bansal. 6 month waiting time.

 

[Zahr82]

Booked with Bansal. 6 month waiting time.

Good move, mine was four months, but it was worth it. I actually think more than dr weir. Not that dr weir doesn't know his shit, far from it.

 

[godlovesatrier]

Dr Weir is probably verhy good for someone who knows their shit as you said.

Dr Bansal probably better for getting prescriptions for things maybe, and tests. As I understand it Dr Weir doesn't do much of this. But also I can't really travel so it's much easier to see Bansal. Dr Weir is amazing for his help with employers and disability benefit as well.

 

[Zahr82]

Dr Weir is probably verhy good for someone who knows their shit as you said.

Dr Bansal probably better for getting prescriptions for things maybe, and tests. As I understand it Dr Weir doesn't do much of this. But also I can't really travel so it's much easier to see Bansal. Dr Weir is amazing for his help with employers and disability benefit as well.

Yeah, I definitely agree with that.

 

[vision blue]

Acylovir deposits crystals inside the kidney.

due to the crystals blocking the small pipes in the kidney.

.

I was about to waste everyone's time by stating point for point why nearly every supplement you take would kill me, as well as opine on the problems/debates with taking antioxidants when you have oxidative stress. But as you say, we are all different, so i'll spare us all that analysis

This is an intriguing statement on acylovir and kidneys. You've gotten me wondering if my bp started going up after all those acylovir attempts (I've posted elsewhere that and valtrex get me sick),. If one has renal artery stenosis, that gives very high bp; i've not been diagnosed with that but no one has ever looked; but now that you say this, i wonder if crystals could be blocking vessels and if that would lead to the same thing as artery stenosis. Also, at some point on ultrasound, it showed i have kidney stones. they are silent, but have to wonder if acylovir is cause. Another possible cause is i do have a little bit high oxalic acid, though its not that high, and do have very acidic urine of unknown cause.

too much to unravel.

if acyclovir crystals are doing any blocking, is that long term? can a crystal get "stuck" somehow and not disolve enough to pass? Any way to dissolve them later? my last acyclovir was quite long ago- plenty of water drunk in the months and years after...
thanks.