One month into Valtrex, starting out on Valcyte

[Matt_C]

Professor Marshall is a molecular biologist and one of the great intellects of our time (yes i'm a fan!). His background is in electrical engineering, nothing like being an electrician. His protocol works and has been adopted by physicians all over the world and it is backed up by a lot of evidence. He has made a very important discovery. His background is irrelevant, some people are genuises and just figure things out. He was sick and motivated to recover and did so because he understood the mechanisms behind his illness once he recognised the association with Vitamin D, and also knew which medications to take because he understood their molecular actions.

 

[redaxe]

Professor Marshall is a molecular biologist and one of the great intellects of our time (yes i'm a fan!). His background is in electrical engineering, nothing like being an electrician. His protocol works and has been adopted by physicians all over the world and it is backed up by a lot of evidence. He has made a very important discovery. His background is irrelevant, some people are genuises and just figure things out. He was sick and motivated to recover and did so because he understood the mechanisms behind his illness once he recognised the association with Vitamin D, and also knew which medications to take because he understood their molecular actions.

A lot of people here are in 2 minds over Trevor Marshall. I considered his protocol but didn't end up going with it. The problem I have is that he has a perfect neat theory and treatment plan organized but where is the proof of his methods & the evidence of pathogens he is treating? I know he says he cured himself but if I'm going to put my faith in another persons medical experience I would at least like them to be capable of diagnosing their patients with an actual infectious organism.
But I suppose that problem goes to the heart of CFS - if we can't easily diagnose an active & ongoing viral, mycotoxin producing mold, lyme or mycoplasma infection than what chance have we got of ever being able to treat this thing quickly and effectively? And that is why most of just lumber on for years without getting much improvement.

Either way if I'm going to start a drug based treatment that is controversial and outside of the established medical orthodoxy I would at least like Marshall to use some tools to diagnose his patients

Quoting this text from his website
Given that all of the so-called autoimmune diseases and chronic infections are a variation of the Th1 inflammatory process, neither a specific diagnostic label or identification of specific pathogens is needed to begin the Marshall Protocol (MP). With the MP, patients identify Th1 inflammation with simple blood tests and then confirm the presence of occult microbes with a therapeutic probe.

That bit about a diagnostic label being unnecessary for treatment is worrying. If you don't have any real diagnostic evidence to support a theory & treatment then you are running into dangerous territory. A precise diagnostic evaluation is the key to concise and effective medical treatment - that is the foundation of modern medicine. I just can't see how one can work without the other.
For instance how do u know it's not a virus - antibiotics won't do you any good then, and their long term use as Marshall has recommended will destroy or alter your microbiome and they can cause mitochondrial damage by creating oxidative stress in Mitos- the very thing you are trying to prevent or undo.

http://www.the-scientist.com/?articles.view/articleNo/36329/title/The-Downside-of-Antibiotics-/

 

[Matt_C]

I AM OF THE VIEW THAT IF YOU HAVE NOTHING POSITIVE TO SAY ABOUT THE TREATMENTS THAT ARE AVAILABLE FOR CFS/ME, THAT YOU KEEP YOUR OPINIONS TO YOURSELF. PLEASE DO NOT CLUTTER MY THREAD WITH THIS KIND OF DEBATE. ALL YOU DO WHEN YOU SPEAK NEGATIVELY ABOUT VALID TREATMENT OPTIONS IS MAKE PEOPLE IN ALREADY HOPELESS SITUATIONS EVEN MORE HOPELESS, WHICH LEADS TO SEVERE DEPRESSION AND A HIGH RISK OF SUICIDE.

I honestly don't know why you think I need or want to engage in this sort of debate on my thread. If you haven't read my previous posts, this thread is to track the progress of my recovery on antiviral treatments, and also to post my experience to date on the MP. I did well on the MP, as have many others. It didn't cure me, but it helped eliminate many problems I developed over time after being infected with the viruses. This is important and useful information for people who are sick and considering treatments. Your views/opinions are not at all helpful to anybody. Good for you that you decided not to go ahead with it. Why on earth do you think you need to try and convince other people not to try it?

You have clearly put your faith in the "medical orthodoxy." How is that working out for you so far @redaxe?

 

[Matt_C]

I picked up some virus last weekend and i'm very annoyed about this. I'm not sure what it is. It's been a week and it seems to have almost run its course. But i'm worried about what this means for my CFS/ME. I'm going to get tested for HSV1 and 2 as I believe that is what I was exposed to (I didn't have sex but kissed someone who I found out has HSV1 - although no face sores, a genital infection apparently). Just what I need, another fucking herpes virus.

I need to start wearing some kind of bubble to protect me from all the god-damned viruses.

 

[Matt_C]

HHV-6 has been compared to HIV in its ability to disable the immune system. In fact, the author of this article has written that AIDS is a subset of chronic fatigue syndrome:

http://www.rense.com/general29/smallpoxHHV6.htm

 

[Matt_C]

The virus has run its course. Not sure what it was, blood test was inconclusive.

I came across this article about combining celebrex with an antiviral producing good results: http://www.as.ua.edu/home/professor-surgeon-team-headed-to-third-phase-clinical-trials/

I spoke to my doctor and i'm going to trial it, but I have to withdraw olmesartan due to a risk of renal toxicity.

 

[knackers323]

A lot of people here are in 2 minds over Trevor Marshall. I considered his protocol but didn't end up going with it. The problem I have is that he has a perfect neat theory and treatment plan organized but where is the proof of his methods & the evidence of pathogens he is treating? I know he says he cured himself but if I'm going to put my faith in another persons medical experience I would at least like them to be capable of diagnosing their patients with an actual infectious organism.
But I suppose that problem goes to the heart of CFS - if we can't easily diagnose an active & ongoing viral, mycotoxin producing mold, lyme or mycoplasma infection than what chance have we got of ever being able to treat this thing quickly and effectively? And that is why most of just lumber on for years without getting much improvement.

Either way if I'm going to start a drug based treatment that is controversial and outside of the established medical orthodoxy I would at least like Marshall to use some tools to diagnose his patients

Quoting this text from his website
Given that all of the so-called autoimmune diseases and chronic infections are a variation of the Th1 inflammatory process, neither a specific diagnostic label or identification of specific pathogens is needed to begin the Marshall Protocol (MP). With the MP, patients identify Th1 inflammation with simple blood tests and then confirm the presence of occult microbes with a therapeutic probe.

That bit about a diagnostic label being unnecessary for treatment is worrying. If you don't have any real diagnostic evidence to support a theory & treatment then you are running into dangerous territory. A precise diagnostic evaluation is the key to concise and effective medical treatment - that is the foundation of modern medicine. I just can't see how one can work without the other.
For instance how do u know it's not a virus - antibiotics won't do you any good then, and their long term use as Marshall has recommended will destroy or alter your microbiome and they can cause mitochondrial damage by creating oxidative stress in Mitos- the very thing you are trying to prevent or undo.

http://www.the-scientist.com/?articles.view/articleNo/36329/title/The-Downside-of-Antibiotics-/

I don't understand this whole vitamin D thing. Hopefully someone can help me.

Marshall says to treat these infection you must lower vitamin and but many other people say that vitamin D is one of the corner stones of the immune system.

I've heard people say that antibiotics or antivirals won't work as good, or at all if vitamin D is low. Is this true?

 

[Matt_C]

@knackers323, this article shows the thinking about why we need to lower vitamin D when we have chronic illness:

http://mpkb.org/home/pathogenesis/vitamind

I will ask that you please start a new thread if you have any questions or challenges, this thread is to post about my personal recovery.

Thank you.

 

[Matt_C]

I have now weaned from Olmesartan and currently have no anti-inflammatory in place. It has been almost a week since weaning. Olmesartan has a 13 hour half life so it is now completely out of my system. So i'll be commencing Celebrex as soon as I can get in to see my doc and get a prescription.

I've been feeling quite sick since weaning olmesartan. I have always had a chronic compression/tension type headache that is currently worse than it has been in a while, brain dysfunction is more noticeable, particularly memory and comprehension, my sleep quality and quantity has deteriorated to the point i'm getting around 4 hours of sleep per night, and I feel slightly nauseated. It's often hard to describe the symptoms i'm dealing with but this is the best I can do. I'm sure others know what i'm talking about. These illnesses affect quality of consciousness in various ways. Olmesartan is an anti-inflammatory and also stimulates the immune system so I expected to feel worse. I'm really excited about starting the Celebrex and am very encouraged by the results reported by Duffy and co.

While the exact doses and exact drug combinations are not yet known, a number of assumptions can be made based on what has been released so far. They discovered the combination by accident when patients were using Famvir for gut problems as well as Celebrex for arthritic conditons. They have also mentioned valaciclovir and have made patent applications for both famvir and valaciclovir along with celebrex. So it can be assumed that taking one of these antivirals along with celebrex at doses recommended for arthritis will yield better results than an antiviral alone.

This link - http://www.google.com/patents/US20130203783 - shows that Celebrex is being used at doses between 100mg - 800mg per day. Celebrex is generally used at 200mg per day for arthritis and other conditions, so this is the dose I will start at. It is also stated that positive results were noticed even at the low doses of celebrex, so it can be assumed that higher doses are more effective than 200mg per day. I'm not sure whether to administer the celebrex once, twice or four times daily, but i'm thinking i'll aim to take four doses per day along with my antivirals.

A big difference is the maximum dose of Famvir was report as 1500mg, and valaciclovir at 1250mg per day. I'm currently taking 4000mg per day, as well as 1350mg per day of valganciclovir as per Dr Lerner's protocol. I'll speak to my doctor to see his thoughts on whether I should reduce the doses.

 

[heapsreal]

A big difference is the maximum dose of Famvir was report as 1500mg, and valaciclovir at 1250mg per day. I'm currently taking 4000mg per day, as well as 1350mg per day of valganciclovir as per Dr Lerner's protocol. I'll speak to my doctor to see his thoughts on whether I should reduce the doses.
So your taking both famvir and valtrex?
interesting to see how this combo works for you.
Any thoughts on adding an immune modulator like immunovir etc?

 

[Matt_C]

Sorry I wasn't clearer, i'm just on Valtrex and valganciclovir, no Famvir.

I haven't thought about adding an immune modulator, I was just planning to do what they did in the studies/protocols. I think I want to keep things as simple as possible, i'm a little concerned about the impact on my kidneys as it is!

 

[Matt_C]

Looks like i'm at risk of developing neutropenia. My neutrophils have dropped from 3.6 to 2.7 (range 2.0 - 7.5) in a bit over two months, and my lymphocytes and all other markers have also dropped. I haven't looked back over my previous blood results prior to starting antivirals, i'll need to request copies. I guess I should stop the valganciclovir before it drops any further.

 

[Matt_C]

Something I haven't been able to find out about the Pridgen antiviral/celebrex study is how long it took until his patients starting to experience remission of their symptoms, and how long they stayed on Celebrex. Celebrex is not safe to take for more than a year according to what i've read, and what my doc told me. If anyone can shed any light here I would be very appreciative.

 

[Matt_C]

I started Celebrex yesterday. I took 200mg in divided doses and i'm taking 100mg every 12 hours. I will consider increasing the dose if I don't see a response.

I have stopped valganciclovir for the time being and will monitor my neutrophil and lymphocyte count for improvement.

 

[heapsreal]

Looks like i'm at risk of developing neutropenia. My neutrophils have dropped from 3.6 to 2.7 (range 2.0 - 7.5) in a bit over two months, and my lymphocytes and all other markers have also dropped. I haven't looked back over my previous blood results prior to starting antivirals, i'll need to request copies. I guess I should stop the valganciclovir before it drops any further.

They are still within a good range. They could be coming down due to treating the infections also and the immune system doesnt have to work as hard. But definately keep an eye on things?

 

[Matt_C]

Thanks heapsreal. Can I ask what your level was when your doctor advised you to stop?

 

[heapsreal]

Thanks heapsreal. Can I ask what your level was when your doctor advised you to stop?

1.4 was my neutrophils when we decided to stop. Before valcyte my neutrophils would hover around the very low 2s and sometimes 1.8/1.9, so thats the level i started with. Thats why i say you have plenty of wiggle room left.

 

[ukxmrv]

It took me a couple of months on Celebrex before I saw any beneficial changes. Had been taking Valtrex for well over a year before I started the Celebrex.

I've been on Celebrex off and on for over a year now. This is off and on because I cannot afford to buy the supply my doctor would like to see me on. Both my ME and my FM are happy for me to be on Celebrex for over a year. We have discussed the side effects and the research into harm from the drug.

 

[ukxmrv]

Professor Marshall is a molecular biologist and one of the great intellects of our time (yes i'm a fan!). His background is in electrical engineering, nothing like being an electrician. His protocol works and has been adopted by physicians all over the world and it is backed up by a lot of evidence. He has made a very important discovery. His background is irrelevant, some people are genuises and just figure things out. He was sick and motivated to recover and did so because he understood the mechanisms behind his illness once he recognised the association with Vitamin D, and also knew which medications to take because he understood their molecular actions.

I can't agree with you on his discoveries. If you had belonged to the early CFS treatment group he posted to years ago you would have seen that he didn't advocate treating any infections then and was using Vit D avoidance as his mainstay. The treatment of infections is all from other doctors and he seems to have tacked that on his program.

It doesn't mean he is wrong about Vit D and there is of course adding to a program using ideas from elsewhere is fine as well.

They were just not his discoveries (treating infections by AB's and AV's) and Vit D avoidance didn't help me so I am not a fan.

 

[Matt_C]

@ukxmrv - I don't believe he had an early CFS treatment group, there are relative few patients with CFS who have completed his protocol. He had an early sarcoidosis treatment group, the blog he posted on was called "sarcinfo.org" or something like that.

How long did you do the protocol for? I did it for six years. It takes a very long time to see any results and for much of that time you may actually feel worse, due to the immunopathology that occurs. Not everyone is getting better on it.

Thanks for the info regarding Celebrex. Would you mind telling me what doses you're taking?