Forget the theory.
Just scream help and MS and let them guess. Don't preempt them. Just let them do it all. Pretend your uninformed. No need to remind them that we are crazy. Do not say "I'll be fine". If nothing else happens they will give the chance of a bed and some care. You probably need it more than you think.
Regards
Beyond Avonex and Valtrex
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Re: Beyond Avonex and Valtrex
28/07/10, 04/10/10, 16/11/10 - CCSVi Dopplers x3 ** 12/10/10 - Poland procedure. Symptoms worsened. No improvement.
13/02/12 - Wheldon ABX protocol for 1.5yrs. Fairly stable but no improvement. Unable to source alternate ABX needed.
13/02/12 - Wheldon ABX protocol for 1.5yrs. Fairly stable but no improvement. Unable to source alternate ABX needed.
Re: Beyond Avonex and Valtrex
Yes,
But you are looking for a magic bullet. If you read everything that I wrote earlier you will put a vaccine for EBV into the box for controlling too much superoxide. There would still be too much iNOS coming from elsewhere. We won't have addressed renal and nutritional deficiencies impacting D, B12 and A. We won't have addressed opportunistic bacterial infections scavenging nutrients. Nor will we have looked at extracellular ATP as a cytokine, the other triggers that can inflame by recruiting Th1 and the role of role of diet and stress.
Pender is chasing a great objective because he addresses one of the precursors of the formation of peroxynitrite but I don't he even think sees it that way. He thinks he has a magic bullet but it's just one aspect.
We need to stop thinking of it as A causes B. Think of it as A plus B plus C and on cause E,F and G and that causes X, Y and Z.
Linear thinking feels good but it needs a more lateral approach.
How are you feeling? Did you go to an outpatients? I would if I was you.
Regards
But you are looking for a magic bullet. If you read everything that I wrote earlier you will put a vaccine for EBV into the box for controlling too much superoxide. There would still be too much iNOS coming from elsewhere. We won't have addressed renal and nutritional deficiencies impacting D, B12 and A. We won't have addressed opportunistic bacterial infections scavenging nutrients. Nor will we have looked at extracellular ATP as a cytokine, the other triggers that can inflame by recruiting Th1 and the role of role of diet and stress.
Pender is chasing a great objective because he addresses one of the precursors of the formation of peroxynitrite but I don't he even think sees it that way. He thinks he has a magic bullet but it's just one aspect.
We need to stop thinking of it as A causes B. Think of it as A plus B plus C and on cause E,F and G and that causes X, Y and Z.
Linear thinking feels good but it needs a more lateral approach.
How are you feeling? Did you go to an outpatients? I would if I was you.
Regards
Re: Beyond Avonex and Valtrex
I have read your recent postings with great interest. With you, I am convinced that the ATP mechanism is quite central to the functioning of the metabolism. Where I am less convinced is the supplementation with minerals. Sure they will have their effect but the uptake by the gut from of supplements is rather low, better to get it from the food which requires good quality food.Scott1 wrote:
What does all this tell us ?
When ATP is extracellular it can mediate cell signalling. It can be neurotoxic when the P2X7 receptor is activated. This activation can be modulated by Zinc, Calcium, Magnesium and Copper. Those minerals may be uninvolved in the liberation of extracellular ATP which, as Buhner and the other paper both argue is likely to be triggered by bacteria.
Nonetheless, suppressing P2X7 is very important. More importantly, dealing with infection becomes paramount. None of this invalidates the EBV/iNOS/Peroxynitrite argument at all. It tends to support it as we are weakened by that earlier mechanism before this mechanism takes hold.
Better go get some minerals.
Regards
I think the metabolism is served by cortisol, cortisol being the life elixer. In our case, the cortisol is low, NO is high for that reason. And this affect the peroxynitrite. Now there may be an element of adrenal fatigue, but I think it is more than that, in fact it might be quite different. When the HPA axis gets affected from the virus/the immune complexes, the adrenal is stimulated less by the hormones from the piutitionary. Corticol runs down, we become more sensitive to stressors, less stress resistant. The thyroid hormone is affected which affects the mitochindrial mechanism. The gut gets less cortisol and its function will detoriate. And a vicious cycle is set in motion.
I find this article is great. It is intertwined with MS in many ways.
http://hormonerestoration.com/Cortisol.html
Re: Beyond Avonex and Valtrex
Hi Leo,
I understand what you're saying about saying about supplements. I agree food is better. Sometimes reality raises it's head and we find that not everyone in a family will modify their eating habits because someone wants/needs to do so. Some of us (me for instance) just don't get control of the kitchen at all! A supplement is a quick and dirty solution compared to whole food. Right now I am really looking at diet as I recover and when I see how it goes I will make comment about it.
On cortisol, I'll acknowledge what you say but hormones are outside my universe. I can see that infection that is difficult to monitor can have a series of profound effects on the cell and human health. I just don't know how infection at the cellular level impacts hormonally but I'm sure it does. It's certainly another loop that we should look at but endocrinology is pretty complex.
Regards
I understand what you're saying about saying about supplements. I agree food is better. Sometimes reality raises it's head and we find that not everyone in a family will modify their eating habits because someone wants/needs to do so. Some of us (me for instance) just don't get control of the kitchen at all! A supplement is a quick and dirty solution compared to whole food. Right now I am really looking at diet as I recover and when I see how it goes I will make comment about it.
On cortisol, I'll acknowledge what you say but hormones are outside my universe. I can see that infection that is difficult to monitor can have a series of profound effects on the cell and human health. I just don't know how infection at the cellular level impacts hormonally but I'm sure it does. It's certainly another loop that we should look at but endocrinology is pretty complex.
Regards
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Re: Beyond Avonex and Valtrex
I really just meant that it helps add weight to the virus/bacteria argument every time something like that succeeds. I'm sure there's a lot more to it, but crikey most neuro's are still looking elsewhere, so it pleases me when there's something else positive on those lines.
I'm feeling a little better, thanks. Could be the Myhill supplements, could be the pregnenolone, the inosine, all or none and just a natural improvement! Though I have to say, it sure as hell didn't feel like i was ever going to improve through those weeks.
I'm far from stable, but have not had any breathing trouble the last two or three days, which is like heaven!
No I didn't, I wasn't still collapsing by that point and they would not have been able to do anything or keep me in. The NHS doesn't give you a bed when there's no visible (by eye or obs) emergency and someone just comes in and tells them that they 'feel' a certain way. They'd keep you for an hour or two but that would be it. It would have been another 'sigh and patronise' and I just can't stand too many more of those right now.
I do have the neuro' appointment in 11 hours though, so I think he's the one that I need to press because I sure as anything do not want to go through that again
I'm feeling a little better, thanks. Could be the Myhill supplements, could be the pregnenolone, the inosine, all or none and just a natural improvement! Though I have to say, it sure as hell didn't feel like i was ever going to improve through those weeks.
I'm far from stable, but have not had any breathing trouble the last two or three days, which is like heaven!
No I didn't, I wasn't still collapsing by that point and they would not have been able to do anything or keep me in. The NHS doesn't give you a bed when there's no visible (by eye or obs) emergency and someone just comes in and tells them that they 'feel' a certain way. They'd keep you for an hour or two but that would be it. It would have been another 'sigh and patronise' and I just can't stand too many more of those right now.
I do have the neuro' appointment in 11 hours though, so I think he's the one that I need to press because I sure as anything do not want to go through that again
28/07/10, 04/10/10, 16/11/10 - CCSVi Dopplers x3 ** 12/10/10 - Poland procedure. Symptoms worsened. No improvement.
13/02/12 - Wheldon ABX protocol for 1.5yrs. Fairly stable but no improvement. Unable to source alternate ABX needed.
13/02/12 - Wheldon ABX protocol for 1.5yrs. Fairly stable but no improvement. Unable to source alternate ABX needed.
Re: Beyond Avonex and Valtrex
Good luck then.
What specifically did you do that you think helped? Did you start doing things differently or was it just time?
Regards
What specifically did you do that you think helped? Did you start doing things differently or was it just time?
Regards
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Re: Beyond Avonex and Valtrex
Hiya, today's appointment update...
[rant] I confess that I ended up getting a bit frustrated that I go to the same place, to see the same neurologist, so they have a clue about me and yet I always get someone different. Cue copious questions and note taking that has been done fifty times before. I've gone with questions and issues that I want to talk about in this precious 5 minutes and most of the time is eaten up responding to pointless questions that should already be in my file! [/rant]
Upshot/results:
CMV Result - No sign of previous or current exposure/infection.
EBV Result - Positive for previous 'exposure' only, no sign of any current or ongoing traces.
JCV Result - He confirmed it was positive.
Avonex - Clearance to go ahead with it.
My one slight success was that he agreed to test for Borrelia serology for Lyme at the same time as doing the Avonex baseline bloods. I have had this before and it's been clear/neg though.
I think outside of that they are just going to refuse any other tests. As far as they are concerned, nothing else is indicated so the NHS won't cover it. I need to work out how to get the mycoplasma genus privately somehow.
Another positive was that the lady acknowledged that the last few weeks have been particularly odd and difficult and has written to request heart ECGs and positional BP whatsit tests. Which I really did appreciate, but then she went on to suggest I might like to try seeing a coping therapist, which I really did not appreciate. C'est la vie!
{edit} Sorry Scott, forgot to answer that. I have no idea, I never claim cause and effect to be clear for anything because things do change rapidly day to day for me. The ONLY thing I did differently was start the Myhill mitochondrial failure supplements two days previously.
[rant] I confess that I ended up getting a bit frustrated that I go to the same place, to see the same neurologist, so they have a clue about me and yet I always get someone different. Cue copious questions and note taking that has been done fifty times before. I've gone with questions and issues that I want to talk about in this precious 5 minutes and most of the time is eaten up responding to pointless questions that should already be in my file! [/rant]
Upshot/results:
CMV Result - No sign of previous or current exposure/infection.
EBV Result - Positive for previous 'exposure' only, no sign of any current or ongoing traces.
JCV Result - He confirmed it was positive.
Avonex - Clearance to go ahead with it.
My one slight success was that he agreed to test for Borrelia serology for Lyme at the same time as doing the Avonex baseline bloods. I have had this before and it's been clear/neg though.
I think outside of that they are just going to refuse any other tests. As far as they are concerned, nothing else is indicated so the NHS won't cover it. I need to work out how to get the mycoplasma genus privately somehow.
Another positive was that the lady acknowledged that the last few weeks have been particularly odd and difficult and has written to request heart ECGs and positional BP whatsit tests. Which I really did appreciate, but then she went on to suggest I might like to try seeing a coping therapist, which I really did not appreciate. C'est la vie!
{edit} Sorry Scott, forgot to answer that. I have no idea, I never claim cause and effect to be clear for anything because things do change rapidly day to day for me. The ONLY thing I did differently was start the Myhill mitochondrial failure supplements two days previously.
28/07/10, 04/10/10, 16/11/10 - CCSVi Dopplers x3 ** 12/10/10 - Poland procedure. Symptoms worsened. No improvement.
13/02/12 - Wheldon ABX protocol for 1.5yrs. Fairly stable but no improvement. Unable to source alternate ABX needed.
13/02/12 - Wheldon ABX protocol for 1.5yrs. Fairly stable but no improvement. Unable to source alternate ABX needed.
Re: Beyond Avonex and Valtrex
Hi again,
Well, a 5 minute appointment is a meeting with a bureaucrat not a medical advisor. My guess is the test for Babesia will probably be very basic and miss the infection. I hope the heart testing indicates nothing because you don't need anything else going wrong. I guess they conceded those tests because they are simple.
Did you try to find a link to a local lyme help group? They should be able to direct you to the right people for testing.
Either way, I suggest you get a copy of "Healing Lyme disease coinfections - complementary and holistic treatments for Bartonella and Mycoplasma" by Stephen Harrod Buhner. It's a masterpiece. I needed to read it twice to get the full picture and I endlessly refer to it every time I think of something new. If nothing else, it provides an excellent explanation of how the cell is influenced by infection. The book details herbal approaches to controlling inflammation in great detail. Nearly all drugs come from observing the behavior of traditional treatments. He likes Cordyceps for moving to TH2 from Th1 and guess what Gilyena is based on. The drug has side effects whilst the original herb seems less problematic. You may get some useful ideas from the book.
The EBV result is misinterpreted. Once you have been infected you will always show a signature of the old infection. Most of the human population have it. A currently active count means you have glandular fever now. EBV resides in the B cell and immortalizes it. Once you have you always have it. This is a source of superoxide. Healthy people can manage that. We need to intervene. What we are trying to limit is peroxynitrite. That means we need to look at superoxide and iNOS. One approach won't be enough.
I don't know the Myhill approach well enough. I use Q10 in big doses, Wahls gets hers from offal. Getting enough is critical but not the only thing. We need the cell respiring properly and that is ATP dependent.
Here's a link to the Avonex note from the manufacturer- http://www.avonex.com/pdfs/guides/Avone ... _Guide.pdf
A little ironic that the you are clear to take it yet the manufacturer says watch out for heart issues first and now you have a heart test prescribed. Cart before the horse in this case, I think.(Standard practice)
Regards
Well, a 5 minute appointment is a meeting with a bureaucrat not a medical advisor. My guess is the test for Babesia will probably be very basic and miss the infection. I hope the heart testing indicates nothing because you don't need anything else going wrong. I guess they conceded those tests because they are simple.
Did you try to find a link to a local lyme help group? They should be able to direct you to the right people for testing.
Either way, I suggest you get a copy of "Healing Lyme disease coinfections - complementary and holistic treatments for Bartonella and Mycoplasma" by Stephen Harrod Buhner. It's a masterpiece. I needed to read it twice to get the full picture and I endlessly refer to it every time I think of something new. If nothing else, it provides an excellent explanation of how the cell is influenced by infection. The book details herbal approaches to controlling inflammation in great detail. Nearly all drugs come from observing the behavior of traditional treatments. He likes Cordyceps for moving to TH2 from Th1 and guess what Gilyena is based on. The drug has side effects whilst the original herb seems less problematic. You may get some useful ideas from the book.
The EBV result is misinterpreted. Once you have been infected you will always show a signature of the old infection. Most of the human population have it. A currently active count means you have glandular fever now. EBV resides in the B cell and immortalizes it. Once you have you always have it. This is a source of superoxide. Healthy people can manage that. We need to intervene. What we are trying to limit is peroxynitrite. That means we need to look at superoxide and iNOS. One approach won't be enough.
I don't know the Myhill approach well enough. I use Q10 in big doses, Wahls gets hers from offal. Getting enough is critical but not the only thing. We need the cell respiring properly and that is ATP dependent.
Here's a link to the Avonex note from the manufacturer- http://www.avonex.com/pdfs/guides/Avone ... _Guide.pdf
A little ironic that the you are clear to take it yet the manufacturer says watch out for heart issues first and now you have a heart test prescribed. Cart before the horse in this case, I think.(Standard practice)
Regards
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Re: Beyond Avonex and Valtrex
Hiya,
Yes, I think you're right. I will be surprised if the ECG ever actually arises tbh, I surely do know that communication between my GP and the MS unit seems rather non existent. I was supposed to start an anti migraine drug a while back but that letter has never turned up, to my understanding. I will visit the GP next week to check, as i'm pretty sure the Avonex will turn up in just a few days.
Thanks for the link, sounds both scary and a lot like me already. Faintness, shortness of breath, rapid heart, flu symptoms, yep pretty much. Is this a no booze at all drug? My once a fortnight G&T is vital to my sanity! XD
You know why the heart vs Avonex thing hadn't even been clocked? Again, because I didn't actually get to see my neuro today, as I had expected to. So although he approved Avonex to the consultant I did see, he would not be aware of what i'd previously been discussing with her. Hmm, yes not a great visit
Not yet, I tried my virology guy, he could do 'some' tests but we're having trouble working out how/where to get the blood. So my next step will be to try the link email on the Lyme site.
Book will be here in via Amazon pigeon mail in a few days. I'll read as much as I can. I read the comments on the book on Amazon with interest. Will read a little more about Cinnamon Leaf Oil now, methinks! See if that's just one opinion or broadly valid. Will have a look at the Lyme site that they link tomorrow too.
Re: the supplements, I think I linked it to you previously. I've been on the Myhill methylation sup.'s since doing the ABX protocol, but i've just deviated it now to try and patch up any mitochondrial failure that may be going on. I'm not going to pretend to understand it, these days I can only digest in broad overview and forget every second thing anyway.
I would hope that i'm pretty well covered nutrition-wise and have been for a long time. I'm a long time greens/carrot juicer and have always been fairly paleo. I am looking at ways to improve it at the moment though, and get back to being dairy free.Ideally i'd like to be 100% raw, that's been my goal for years... turns out i'm pretty rubbish at it because I just get cold and want hot food.
On a side note, to what's becoming a rather long reply, sorry, re: our much earlier conversations about tonsils and throat problems. I pushed for a second ENT opinion and have a second all clear on swabs and camera. Xray will be done later today. He thinks it's night time acid reflux that i'm unaware of that riling and burning my throat, tonsils and nose. So i'm taking what he's giving me and testing the theory for a few weeks. So far... he could be right. Obviously this doesn't explain why tonsil problems seemed to start all this, or why penicillin generally makes me feel better (5-7 days only, 10 days has the opposite effect). But hey, i'll take alleviation of some symptoms for now
Yes, I think you're right. I will be surprised if the ECG ever actually arises tbh, I surely do know that communication between my GP and the MS unit seems rather non existent. I was supposed to start an anti migraine drug a while back but that letter has never turned up, to my understanding. I will visit the GP next week to check, as i'm pretty sure the Avonex will turn up in just a few days.
Thanks for the link, sounds both scary and a lot like me already. Faintness, shortness of breath, rapid heart, flu symptoms, yep pretty much. Is this a no booze at all drug? My once a fortnight G&T is vital to my sanity! XD
You know why the heart vs Avonex thing hadn't even been clocked? Again, because I didn't actually get to see my neuro today, as I had expected to. So although he approved Avonex to the consultant I did see, he would not be aware of what i'd previously been discussing with her. Hmm, yes not a great visit
Not yet, I tried my virology guy, he could do 'some' tests but we're having trouble working out how/where to get the blood. So my next step will be to try the link email on the Lyme site.
Book will be here in via Amazon pigeon mail in a few days. I'll read as much as I can. I read the comments on the book on Amazon with interest. Will read a little more about Cinnamon Leaf Oil now, methinks! See if that's just one opinion or broadly valid. Will have a look at the Lyme site that they link tomorrow too.
Re: the supplements, I think I linked it to you previously. I've been on the Myhill methylation sup.'s since doing the ABX protocol, but i've just deviated it now to try and patch up any mitochondrial failure that may be going on. I'm not going to pretend to understand it, these days I can only digest in broad overview and forget every second thing anyway.
I would hope that i'm pretty well covered nutrition-wise and have been for a long time. I'm a long time greens/carrot juicer and have always been fairly paleo. I am looking at ways to improve it at the moment though, and get back to being dairy free.Ideally i'd like to be 100% raw, that's been my goal for years... turns out i'm pretty rubbish at it because I just get cold and want hot food.
On a side note, to what's becoming a rather long reply, sorry, re: our much earlier conversations about tonsils and throat problems. I pushed for a second ENT opinion and have a second all clear on swabs and camera. Xray will be done later today. He thinks it's night time acid reflux that i'm unaware of that riling and burning my throat, tonsils and nose. So i'm taking what he's giving me and testing the theory for a few weeks. So far... he could be right. Obviously this doesn't explain why tonsil problems seemed to start all this, or why penicillin generally makes me feel better (5-7 days only, 10 days has the opposite effect). But hey, i'll take alleviation of some symptoms for now
28/07/10, 04/10/10, 16/11/10 - CCSVi Dopplers x3 ** 12/10/10 - Poland procedure. Symptoms worsened. No improvement.
13/02/12 - Wheldon ABX protocol for 1.5yrs. Fairly stable but no improvement. Unable to source alternate ABX needed.
13/02/12 - Wheldon ABX protocol for 1.5yrs. Fairly stable but no improvement. Unable to source alternate ABX needed.
Re: Beyond Avonex and Valtrex
Hi again,
Sounds chaotic without a plan. That's tough on you.
I did have acid reflux years ago but seemed to solve it by modifications by to diet and importantly a lot of stretches of my torso in Pilates. I'm the only person I know of who claims that Pilates helped but I was really stretching the muscles between my belly button and throat. I don't even know how to describe what I did but it worked.
You said something interesting about taking blood. I presume your veins aren't good. Have you tried L-arginine on a consistent basis?
I am both gluten and dairy free and I am really adding a lot of coconut to my diet. There is a Malaysian brand of coconut milk and cream called "Ayam". Those small tins of coconut cream wizzed up with some seasonal fruit or berries in a blender for breakfast is quite good. You won't miss dairy at all once you get in the swing of it.
I hope the book is of use to you.
Regards
Sounds chaotic without a plan. That's tough on you.
I did have acid reflux years ago but seemed to solve it by modifications by to diet and importantly a lot of stretches of my torso in Pilates. I'm the only person I know of who claims that Pilates helped but I was really stretching the muscles between my belly button and throat. I don't even know how to describe what I did but it worked.
You said something interesting about taking blood. I presume your veins aren't good. Have you tried L-arginine on a consistent basis?
I am both gluten and dairy free and I am really adding a lot of coconut to my diet. There is a Malaysian brand of coconut milk and cream called "Ayam". Those small tins of coconut cream wizzed up with some seasonal fruit or berries in a blender for breakfast is quite good. You won't miss dairy at all once you get in the swing of it.
I hope the book is of use to you.
Regards
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Re: Beyond Avonex and Valtrex
Hi,
Oh sorry I phrased that badly, my veins are pretty good, they stand proud and i've not a lot of fat so taking blood is easy. The problem is that the virologist runs a private lab but has no means of taking the blood, however the NHS won't take blood and send it elsewhere. So it's how to get it taken and sent to him that's tricky. Yes I started the arginine when you told me to and take it every morning
I've had these heart issues again tonight so I googled again (not always wise, I know) and yet again am coming back to finding similar stories in the CFS camp. I was reading a Q&A by a patient seeking advice and, as I read down, Myhill popped up again - I cannot agree with her more on this subject with the answer she gives; seems an apt summary to me, FULL TEXT
"Heart problems... are common in people with this [CFS]. The reason for this is that the underlying causes of M.E./CFS and heart muscle disease are I believe linked.
The first piece of evidence comes from a paper by Dr Arnold Peckerman... showing that CFS patients suffer from low blood pressure, low blood volume and are poor at maintaining their blood pressure when they stand up. Being a cardiologist, he diagnosed heart malfunction and went on to revive a test... called impedance cardiography, which measures cardiac output in a very non-invasive way.
Essentially what he found was that in severely afflicted CFS patients their hearts were failing to work efficiently and this explained many of their symptoms. The work of the heart is much less if you’re lying down because it’s much easier to push blood around on the flat than up and down hills! Secondly, when cardiac output falls, the body shuts down the blood supply to less important areas in order to maintain vital organs such as the kidneys, liver and gut.
Therefore, we see decreased blood flow to skin (poor temperature regulation, cold hands and feet), to muscle (early switch to anaerobic or non-oxygen fuelled metabolism), to the brain (foggy brain and difficulty thinking clearly) and so on. People with M.E./CFS who are not so severely afflicted also have a degree of heart malfunction which manifests as poor exercise tolerance.
Tachy-arrhythmias are likely to be due to poor energy supply to the heart’s natural pacemaker, or possibly an adrenaline response from the body as cardiac output falls. The heart is simply not working efficiently as a pump, which I suspect is why she gets the severe thudding heartbeat, or again this could be an adrenaline response to low cardiac output. "
What I have highlighted there, is describing me to n extremely apt degree. I'm actually quite surprised and a little enlightened, perhaps.
I have always suspected a combination of viral damage and adrenaline pulses when energy is simply unavailable, but have never seen it explained so well before. How does the theory sound to you? Because I may take this reply to my GP next week to help explain what I suspect is happening when I ask them for the ECG
I keep thinking I should move this conversation into my own thread somewhere to free up your thread back for it's original purpose. Just not sure where to put a personal diary/convo kind of thread! My apologies to all for thread hogging!
Oh sorry I phrased that badly, my veins are pretty good, they stand proud and i've not a lot of fat so taking blood is easy. The problem is that the virologist runs a private lab but has no means of taking the blood, however the NHS won't take blood and send it elsewhere. So it's how to get it taken and sent to him that's tricky. Yes I started the arginine when you told me to and take it every morning
I've had these heart issues again tonight so I googled again (not always wise, I know) and yet again am coming back to finding similar stories in the CFS camp. I was reading a Q&A by a patient seeking advice and, as I read down, Myhill popped up again - I cannot agree with her more on this subject with the answer she gives; seems an apt summary to me, FULL TEXT
"Heart problems... are common in people with this [CFS]. The reason for this is that the underlying causes of M.E./CFS and heart muscle disease are I believe linked.
The first piece of evidence comes from a paper by Dr Arnold Peckerman... showing that CFS patients suffer from low blood pressure, low blood volume and are poor at maintaining their blood pressure when they stand up. Being a cardiologist, he diagnosed heart malfunction and went on to revive a test... called impedance cardiography, which measures cardiac output in a very non-invasive way.
Essentially what he found was that in severely afflicted CFS patients their hearts were failing to work efficiently and this explained many of their symptoms. The work of the heart is much less if you’re lying down because it’s much easier to push blood around on the flat than up and down hills! Secondly, when cardiac output falls, the body shuts down the blood supply to less important areas in order to maintain vital organs such as the kidneys, liver and gut.
Therefore, we see decreased blood flow to skin (poor temperature regulation, cold hands and feet), to muscle (early switch to anaerobic or non-oxygen fuelled metabolism), to the brain (foggy brain and difficulty thinking clearly) and so on. People with M.E./CFS who are not so severely afflicted also have a degree of heart malfunction which manifests as poor exercise tolerance.
Tachy-arrhythmias are likely to be due to poor energy supply to the heart’s natural pacemaker, or possibly an adrenaline response from the body as cardiac output falls. The heart is simply not working efficiently as a pump, which I suspect is why she gets the severe thudding heartbeat, or again this could be an adrenaline response to low cardiac output. "
What I have highlighted there, is describing me to n extremely apt degree. I'm actually quite surprised and a little enlightened, perhaps.
I have always suspected a combination of viral damage and adrenaline pulses when energy is simply unavailable, but have never seen it explained so well before. How does the theory sound to you? Because I may take this reply to my GP next week to help explain what I suspect is happening when I ask them for the ECG
I keep thinking I should move this conversation into my own thread somewhere to free up your thread back for it's original purpose. Just not sure where to put a personal diary/convo kind of thread! My apologies to all for thread hogging!
28/07/10, 04/10/10, 16/11/10 - CCSVi Dopplers x3 ** 12/10/10 - Poland procedure. Symptoms worsened. No improvement.
13/02/12 - Wheldon ABX protocol for 1.5yrs. Fairly stable but no improvement. Unable to source alternate ABX needed.
13/02/12 - Wheldon ABX protocol for 1.5yrs. Fairly stable but no improvement. Unable to source alternate ABX needed.
Re: Beyond Avonex and Valtrex
I would be a lot happier if you wore a monitor that looks at your heart for 24hrs. Whatever the reason, it is a recurring issue. The guy prescribing the Avonex should know and you should know. The problem I had with my AF is I was one decent thump of the heart from doing some serious damage and I didn't know.
The thread doesn't matter. The conversation is relevant so stay here if you want. At least people know where to find the conversation.
Regards
The thread doesn't matter. The conversation is relevant so stay here if you want. At least people know where to find the conversation.
Regards
Last edited by Scott1 on Thu Nov 20, 2014 10:37 pm, edited 1 time in total.
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Interrupted
- Family Elder
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Re: Beyond Avonex and Valtrex
Mm, agree with you there.
[later edit, so as not to add another post...]
---- Saw a new GP today, nice fella, have an ECG and 24hr ECG booked in for the beginning of December.
This is good but as far as I am aware, I will not be seeing or able to ask any questions that I may have to a cardiologist, which is a shame. Still, am grateful that the GP was open to exploring this avenue.
[later edit, so as not to add another post...]
---- Saw a new GP today, nice fella, have an ECG and 24hr ECG booked in for the beginning of December.
This is good but as far as I am aware, I will not be seeing or able to ask any questions that I may have to a cardiologist, which is a shame. Still, am grateful that the GP was open to exploring this avenue.
28/07/10, 04/10/10, 16/11/10 - CCSVi Dopplers x3 ** 12/10/10 - Poland procedure. Symptoms worsened. No improvement.
13/02/12 - Wheldon ABX protocol for 1.5yrs. Fairly stable but no improvement. Unable to source alternate ABX needed.
13/02/12 - Wheldon ABX protocol for 1.5yrs. Fairly stable but no improvement. Unable to source alternate ABX needed.
Re: Beyond Avonex and Valtrex
Hi.
Now it's the weekend I had a chance to go through that Myhill link. It's quite interesting and it jogged some ancient memories for me. My earliest memory of a racing heart was when I was around 6 or 7 years old. My mother found me lying in our back yard and said I described it as "everything going all fast". I recall the incident but not well. My mother brought it up 40 years later and wondered if that was related to my MS. I had numerous other bouts of a racing heart until I was around 20. My teeth felt like I had a mild electric current running through them and I often felt as if there was a disconnect between the speed I was actually moving at and how fast everything felt. It did cease happening and I forgot about it. The issue is the first time it happened was at least 2 years before I developed glandular fever. This again suggests numerous events may be involved to trigger MS. If the Sinatra solution is blaming the heart issues on ATP failing then perhaps that's a precursor to make EBV infection more difficult to control. The question then is what triggers the ATP to be compromised. I'll get the book and have a read.
Buhners argument about the persistence of Mycoplasmas and Bartonellas etc would be a possible cause. I grew up in the country. Bugs , insects, merino sheep, cattle dogs and I would have been on first name terms. I used cattle yards as playgrounds. I played endlessly around swampy creeks with bugs going everywhere.
None of that helps with your problem. I hope Buhners book is of use to you.
There are elements of my diet I have altered with success. I don't have a long enough exposure to make a reasonable comment about whether its worthwhile.
What I have done is kill all dairy and all gluten, ramp up the fats from animals, avocado and particularly coconut. I've knocked out all vegetable fats and margarine. It's sort of a bastardised paleo. I think the medium chain fats are critical and by default the diet pushes you into more dark green leafy vegetables so I guess the B vitamins are all through that. I still take the antibiotic, Zinnat, and Valacyclovir, 750mg a night of Q10, 2 curcumin tablets, pomegranate juice and probiotics in the morning plus a zinc tablet in the morning. I want to get back on the carrot juice but I've been off it whilst I'm on sick leave as I don't go passed the place that made it for me (lazy, I know).
My Pilates has been a lifesaver. Getting the muscles moving is so important. I now move reasonably freely. My hands are still numb and I don't run to catch a train. I sleep till I wake. Each night I go to bed at 10 and progressively I am waking earlier as time goes by.
Above all, I wont let myself get stressed. I am not a nervy person but the job I did was all about confrontation. At its core it was selling ideas to people who didn't want to hear them. Convincing them they should listen, then being interrogated to check if I was right. All in all a very tiring job. Now I'm not there everyone is ringing up saying "where are you". This camel has done enough, he will not go out into the desert. A bit "Zen like" for want of a better description.
The other thing that helps is having a friend. Not a shoulder to cry on, Just someone who believes in you as much as you believe in them. It's taken me half a century to meet a true friend. There is no selfishness or ownership issues involved, Everyone has their own problems and understanding that is the key to friendship. A symbiotic relationship is the best medicine. It is 75% of my recovery and the thing that takes me out of myself. My family see me as a bottomless pit. That's what they are trained to do so habits don't change easily. I imagine some families have those friendships in them but I suspect the politics of family life kills the purity of friendship in many cases. I hope everyone finds a friend. Try not to do everything by yourself but try to help other people with non MS stuff.
Regards
Now it's the weekend I had a chance to go through that Myhill link. It's quite interesting and it jogged some ancient memories for me. My earliest memory of a racing heart was when I was around 6 or 7 years old. My mother found me lying in our back yard and said I described it as "everything going all fast". I recall the incident but not well. My mother brought it up 40 years later and wondered if that was related to my MS. I had numerous other bouts of a racing heart until I was around 20. My teeth felt like I had a mild electric current running through them and I often felt as if there was a disconnect between the speed I was actually moving at and how fast everything felt. It did cease happening and I forgot about it. The issue is the first time it happened was at least 2 years before I developed glandular fever. This again suggests numerous events may be involved to trigger MS. If the Sinatra solution is blaming the heart issues on ATP failing then perhaps that's a precursor to make EBV infection more difficult to control. The question then is what triggers the ATP to be compromised. I'll get the book and have a read.
Buhners argument about the persistence of Mycoplasmas and Bartonellas etc would be a possible cause. I grew up in the country. Bugs , insects, merino sheep, cattle dogs and I would have been on first name terms. I used cattle yards as playgrounds. I played endlessly around swampy creeks with bugs going everywhere.
None of that helps with your problem. I hope Buhners book is of use to you.
There are elements of my diet I have altered with success. I don't have a long enough exposure to make a reasonable comment about whether its worthwhile.
What I have done is kill all dairy and all gluten, ramp up the fats from animals, avocado and particularly coconut. I've knocked out all vegetable fats and margarine. It's sort of a bastardised paleo. I think the medium chain fats are critical and by default the diet pushes you into more dark green leafy vegetables so I guess the B vitamins are all through that. I still take the antibiotic, Zinnat, and Valacyclovir, 750mg a night of Q10, 2 curcumin tablets, pomegranate juice and probiotics in the morning plus a zinc tablet in the morning. I want to get back on the carrot juice but I've been off it whilst I'm on sick leave as I don't go passed the place that made it for me (lazy, I know).
My Pilates has been a lifesaver. Getting the muscles moving is so important. I now move reasonably freely. My hands are still numb and I don't run to catch a train. I sleep till I wake. Each night I go to bed at 10 and progressively I am waking earlier as time goes by.
Above all, I wont let myself get stressed. I am not a nervy person but the job I did was all about confrontation. At its core it was selling ideas to people who didn't want to hear them. Convincing them they should listen, then being interrogated to check if I was right. All in all a very tiring job. Now I'm not there everyone is ringing up saying "where are you". This camel has done enough, he will not go out into the desert. A bit "Zen like" for want of a better description.
The other thing that helps is having a friend. Not a shoulder to cry on, Just someone who believes in you as much as you believe in them. It's taken me half a century to meet a true friend. There is no selfishness or ownership issues involved, Everyone has their own problems and understanding that is the key to friendship. A symbiotic relationship is the best medicine. It is 75% of my recovery and the thing that takes me out of myself. My family see me as a bottomless pit. That's what they are trained to do so habits don't change easily. I imagine some families have those friendships in them but I suspect the politics of family life kills the purity of friendship in many cases. I hope everyone finds a friend. Try not to do everything by yourself but try to help other people with non MS stuff.
Regards