13th week of Valcyte

[SaraM]

undcvr,
Could you give us a little info on your Detox protocol, please?

 

[undcvr]

Rituxan does not deplete all of your b-cells, it only depletes the b-cells that express the CD20 marker. If you really had no b-cells, you would be dead within weeks.

Some patients in the Norwegian study stayed better for three years after getting a measly two doses of Rituxan and they still have not needed retreatment. But most patients needed retreatment.

Dr. Kogelnik is trying to combine antivirals with Rituxan in order to inhibit the active virus while depleting the reservoir of latent virus. He believes this results in a higher response rate than either treatment alone, and he is hoping that the combination will result in a more prolonged remission.

I did Methotrexate (MTX) for awhile, only a month so I don't know if it even worked or not. Honestly from my own experience and how I am recovering, all the symptoms of CFS is just a facet of a broken down detox engine. Get that up and working again and your body can heal itself. I am quite confident of saying this because I have had it all too: EBV, gut dysbiosis, depression, weak nervous system, weak immune system, weak or autoimmune attacked thyroid and mitochondrial damage. I have had one point or another gone through PEM and Orthostatic Intolerance.

CFS is not 'in the gut' as many people think it is or at least it is not an issue caused by the gut. It is toxins stuck in the gut when bile gets dumped there and cannot leave the body that causes the environment for gut problems and pathogens. Worse yet bile that just sits in the gut with toxins will just get reabsorbed again into the body just to be recirculated and redistributed. You have to get it out.

 

[mellster]

I agree mostly, but once the gut is screwed up things can go downhill much faster as nutrient malabsorption will keep you deficient - so, healing the gut (while it may not be the root cause) is very important.

I did Methotrexate (MTX) for awhile, only a month so I don't know if it even worked or not. Honestly from my own experience and how I am recovering, all the symptoms of CFS is just a facet of a broken down detox engine. Get that up and working again and your body can heal itself. I am quite confident of saying this because I have had it all too: EBV, gut dysbiosis, depression, weak nervous system, weak immune system, weak or autoimmune attacked thyroid and mitochondrial damage. I have had one point or another gone through PEM and Orthostatic Intolerance.

CFS is not 'in the gut' as many people think it is or at least it is not an issue caused by the gut. It is toxins stuck in the gut when bile gets dumped there and cannot leave the body that causes the environment for gut problems and pathogens. Worse yet bile that just sits in the gut with toxins will just get reabsorbed again into the body just to be recirculated and redistributed. You have to get it out.

 

[undcvr]

You have to see the liver, gall bladder, gut, bile and fiber as one system. ( And maybe the stomach but I suspect that it will resolve itself once the gut does)

 

[undcvr]

I don't have CFS anymore

I waited awhile to check reactions to post this but I don't have CFS. This is a new developement that I am sure of. I have stopped Valcyte for 2-3 months now.

I do have another problem though a body that just cannot detox. I notice this awhile back when I feel worse in the winter. I think it is my liver. It just cannot detox and I have to keep activating it or coaxing it or it will stop and all my problems will come back.

I will start a new thread soon about what I have been doing but CFS is definitely a detox issue and I view more and more from that point of view now.

 

[SOC]

I waited awhile to check reactions to post this but I don't have CFS. This is a new developement that I am sure of. I have stopped Valcyte for 2-3 months now.

I do have another problem though a body that just cannot detox. I notice this awhile back when I feel worse in the winter. I think it is my liver. It just cannot detox and I have to keep activating it or coaxing it or it will stop and all my problems will come back.

I will start a new thread soon about what I have been doing but CFS is definitely a detox issue and I view more and more from that point of view now.

Congratulations! It's always good to hear of someone who has gotten past CFS.

How are you defining CFS in the sense of not having it anymore? Do you not have PEM? Do I understand correctly that you are still detoxing? How do you distinguish the toxicity from the CFS? I look forward to your thread on what you have been doing.

 

[maddietod]

Congratulations, undcvr! I wish you all the luck in the world on your quest for detox that works for you.

 

[vli]

Omg undcvr congrats

Hi undcvr, u don't know me but I just wanted to say how happy I was to hear u no longer have cfs. That's absolutely amazing. I am in NYC doing Ampligen with Dr enlander and I would be really happy to meet you if u ever want to of course in the next 10 months or so. I started ampligen 2/23.

 

[undcvr]

I am in the middle of a 40 hr work week. If I make it through this work week unscathed it will be the first time in over a decade that I have been able to work a whole week. Will report more on this later, need to go detox, conserve my energy and rest.

I still have not gone back on any of the AVs. My supplementation intake is moderate. My detox regime is I would say high to very high to cope with the daily stress.

 

[undcvr]

Congratulations! It's always good to hear of someone who has gotten past CFS.

How are you defining CFS in the sense of not having it anymore? Do you not have PEM? Do I understand correctly that you are still detoxing? How do you distinguish the toxicity from the CFS? I look forward to your thread on what you have been doing.

I don't have pervasive chronic symptoms of fatigue, that is what I don't have anymore and that I how I define it I guess. I am able to leave my home and go out everyday of the week for awhile even though I come home tired. Although over one weekend I played tennis for 2hrs each on both days back to back and felt ok after that. No prolonged PEM, was even able to function immediately after that.

I am still detoxing, I will always detox I guess. My whole diet is taken up with detox foods now as I arrange my work day around my main meals.
I distinguish this round of toxicity from CFS from the fact that even though I am weak and struggling through it. I am still able to struggle through it in the first place and go back again to work the next day.

I am closing this thread soon. I've changed my mind I think CFS can be cured, or a functionally daily cure from the foods we eat.

 

[SOC]

I don't have pervasive chronic symptoms of fatigue, that is what I don't have anymore and that I how I define it I guess. I am able to leave my home and go out everyday of the week for awhile even though I come home tired. Although over one weekend I played tennis for 2hrs each on both days back to back and felt ok after that. No prolonged PEM, was even able to function immediately after that.

I am still detoxing, I will always detox I guess. My whole diet is taken up with detox foods now as I arrange my work day around my main meals.
I distinguish this round of toxicity from CFS from the fact that even though I am weak and struggling through it. I am still able to struggle through it in the first place and go back again to work the next day.

I am closing this thread soon. I've changed my mind I think CFS can be cured, or a functionally daily cure from the foods we eat.

Wow, that's great! I think we'd all love to be in that place, whatever we call it. Congratulations!

 

[keepitreal]

undcvr!

your posts are inspiring. i too have made ground up changes to my diet, experienced the most improvement when i focused on detoxing my body (lymphatic drainage massage worked amazing wonders for me) and have improved my functionality by boat loads with the right supplements, herbs, acupuncture, and healthy lifestyle changes (organic whole foods, etc).

am i understanding correctly that you were up and about and running/exercising/living a fuller life while on valcyte? at 1800 mg 2x daily?

i just started and feel abnormally good---not what i was told to expect or what i prepared for. is it possible for this to last? did you have a rough period with lots of side effects while on valcyte?

thank you so much for responding in advance. i'm grateful to have an opportunity to hear about your experience.

 

[undcvr]

I have stopped taking Valcyte since the beginning of this year, prior to that I was on it for 2 years and was taking 900mg 2X a day for a total of 1800mg a day. Taking the Valcyte and detoxing regularly, my CFS was just a distant memory and I could do almost everything I wanted. But I want to stress that Valcyte alone was not enough and without a detoxing protocol I still felt that I had some immune disturbances.

The beneficial effects you get from Valcyte Will last even after you come off it but back it up with a detox regime. I did not have many side effects from Valcyte only that after taking it at such a high dose for so long it began to affect my white blood cell count. So I decided to come off it and did not regret it at all.

 

[keepitreal]

how are you feeling now that you've been off it? what is your detox regimen?

you were able to exercise while on the drug?

i'm taking valcyte and famvir at the same time. yesterday was the completion of the first week. i feel amazing.
i have more energy and no sore throat, which is a miracle. i was not told to expect this response, so it's a bit odd and i keep thinking that the other shoe will drop. what would your advice me to someone like me who has recently embarked on this western med approach. what is the single most important detox element to you regimen?

i read in other posts that you eat "detox foods," what are those?

thank you again for replying. it's invaluable. usually i see people post something helpful or mention feeling better and they don't stay active on the forum to check in with and ask questions!

 

[undcvr]

how are you feeling now that you've been off it?

Well depending on the weather I have been working 5 day weeks with anywhere between 5-8 hrs a day. I can do this for almost 2 weeks in a row then I need about 3 days break. I feel fine but not all the way well but then I found out that most people around me don't feel that great either. I detox everyday.

what is your detox regimen?

This will take time to write out and explain.

you were able to exercise while on the drug?

Over some weekends I would excercise 2hrs each day in the mornings on the weekends. I would recover well enuf to go to work on Mon.

what would your advice me to someone like me who has recently embarked on this western med approach.

I guess the best advice I can give here is get off it as soon as you can but not so soon enuf that you do not experience the full benefits from it. Does that make sense ?

what is the single most important detox element to you regimen?

This is a big problem here. There IS NO ONE SINGLE MOST IMPORTANT DETOX ELEMENT. It is a whole bunch of stuff that you have to take and juggle together at the same time to keep your detox engine ( liver, bile, gut, fiber ) going. This is either a gross misunderstanding caused by western medication ( one pill cure all approach ) or we are just lazy and all just want to take one pill to solve everything. I think it is abit of both.

You need to make the liver detox more. Wasabi, Horseradish, Mustard, Limoline, Bioperine, pectin. The toxins will come out in the bile. You need to make more bile and move that bile so that it does not sit in your gut and the toxins get reabsorbed and redistributed: Dandelion, Artichoke, pectin. You need foods to bind to the bile and move it out: fiber, psyllium. Mostly we are talking about oil soluble toxins but if u want to get rid of water soluble toxins too then take juniper to make the kidneys work more efficiently.

Do this long enuf, lower your liver toxin load, and it will be able to go pull toxins from the blood and other places reducing the overall toxin load in your body. Your symptoms will gradually disappear. Just becareful because it is a hard and painful process.

 

[keepitreal]

when you say that you feel fine, but not all the way well, what do you mean? what makes you feel "not all the way well?"

i read back over some of your older posts to get myself more up to day with your process. you mentioned feeling like you still have "immune issues," do you still feel this way? what did you mean?

what effect do you think the detoxing has on the overall immune system issues that people with cfs face?

i hear you about the one-stop cure. it wasn't a good question. of course there's no simple one-pill, one-stop cure or approach. integral approach is key.

when you first got sick, did it start with a virus? what primary symptoms bothered you?

for me, i've struggled with a low-functioning immune system, swollen glands and lymph nodes, sore throat, headaches, digestive issues, food sensitivities (started with cfs, not before), rashes, hives, and sleep disturbances. it's been a long journey and i've tried so many things. valcyte and famvir are my hopes for recovery right now. i will do anything it takes and never stop trying. thanks again, so much, for your responses. they are helping me SO much.

 

[undcvr]

- when you say that you feel fine, but not all the way well, what do you mean? what makes you feel "not all the way well?"
I think a simple way to put this is that my detox system still breaks down every once in a while. It is generally slow and sluggish and I can feel it. It seems to be a system that I have to keep supporting otherwise it would just stall. Every now and then, when I am over worked or stressed is when I really feel it. I am comparing myself to a normal healthy person here when I say that I don't feel all well. I just tire more easily sometimes and need more rest to recover.

- i read back over some of your older posts to get myself more up to day with your process. you mentioned feeling like you still have "immune issues," do you still feel this way? what did you mean?
I mentioned this specifically related to Valcyte I think. I felt that even though the AVs helped me they did not address my CFS directly. The EBV and HHV6 that were active were simply opportunistic and not the real cause of CFS. While I was on the Valcyte, it treated the extreme and severe fatigue but there were other issues too that it did not treat. Mainly auto immune ones.

- what effect do you think the detoxing has on the overall immune system issues that people with cfs face?
I think that much of the toxins involved in cfs are oil soluble toxins and I also think that much of the immune system is made up of lipids. If not cleared by the body they will accumulate in the immune system and CNS and cause all sorts of problems. It is interesting to note too that many pple with CFS and Lyme have difficulty breaking out into a sweat. They just cannot sweat and as we know sweating through the pores on the skin is one of the ways that the body uses to remove toxins, both water and oil soluble. Think back to Far IR suanas, dry suanas, steam rooms and hot springs in the winter. Regular healthy people just naturally turn to these therapies to help them detox especially in the winter. Their body knows it intuitively. CFS symptoms execerbate in the cold months because the cold makes processes in our bodies contract, this is not conducive to detoxing. We need expansion to detox, like taking a warm or hot bath. In the colder months, when you hardly sweat at all, the liver is the only way that the body can detox. If you don't support it your symptoms get worse.

- when you first got sick, did it start with a virus? what primary symptoms bothered you?
This was a long time ago, at least 15 years ago. I think, if I remember correctly it started with a bout of stomach flu that lasted much longer than it should have. It just seemed that I was falling sick from one stomach virus after another and just never recovered from it. After that the stresses and strains of everyday living just made it worse and I just never recovered.

for me, i've struggled with a low-functioning immune system, swollen glands and lymph nodes, sore throat, headaches, digestive issues, food sensitivities (started with cfs, not before), rashes, hives, and sleep disturbances. it's been a long journey and i've tried so many things. valcyte and famvir are my hopes for recovery right now. i will do anything it takes and never stop trying. thanks again, so much, for your responses. they are helping me SO much.
- I actually believe in massage and lymphatic drainage massage alot. I think it is even better done with aromatherapy. Massaging and focusing on the lymph system and the organs under the whole stomach region is a good way to stimulate organs that are sluggish,

 

[undcvr]

undcvr,
Could you give us a little info on your Detox protocol, please?

One of the cornerstones of my detox protocol is EGCG, the extract from Green tea. By some estimates I am taking anywhere betweem 60-100 cups worth of EGCG in green tea a day. Assuming 10-25mg of EGCG in a cup of green tea. I try to take 1000mg of EGCG a day. I am about 155 lb.

If you can somehow scale up to somewhere near that amount. It. Will. Change. Your. Life. No matter what kind of chronic disease you have. I think that everyone with ME/CFS should be on super high doses of EGCG or Curcumin. It is just that for cultural reasons ( I am Chinese ) and cost effectiveness, I prefer EGCG.

Be warned that moving up to that high amounts will have detox issues along the way. Your body will be seduced by it to dump toxins, they will go into the bloodstream. If not detoxified fast enuf by the liver, and they nvr can, they will cause problems along the way. Start slow and take stuff to support liver detox processes too. There is a low-caffeine version of this EGCG out there.

Also women CANNOT become pregnant while on it. It is linked to other neonatal issues not just neural birth defect which is easily corrected by a folate supplement. I take an active folate supplement.

 

[SaraM]

One of the cornerstones of my detox protocol is EGCG, the extract from Green tea. By some estimates I am taking anywhere betweem 60-100 cups worth of EGCG in green tea a day. Assuming 10-25mg of EGCG in a cup of green tea. I try to take 1000mg of EGCG a day. I am about 155 lb.

If you can somehow scale up to somewhere near that amount. It. Will. Change. Your. Life. No matter what kind of chronic disease you have. I think that everyone with ME/CFS should be on super high doses of EGCG or Curcumin. It is just that for cultural reasons ( I am Chinese ) and cost effectiveness, I prefer EGCG.

Be warned that moving up to that high amounts will have detox issues along the way. You body will be seduced by it to dump toxins, they will go into the bloodstream. If not detoxified fast enuf by the liver, and they nvr can, they will cause problems along the way. Start slow and take stuff to support liver detox processes too. There is a low-caffeine version of this EGCG out there.

Also women CANNOT become pregnant while on it. It is linked to other neonatal issues not just neural birth defect which is easily corrected by a folate supplement. I take an active folate supplement.

Thanks a lot. I will order some EGCG today. Will see if it works for me. Liver is in a bad shape now.

 

[undcvr]

I think that for pple like us if we have to choose a liver supplement and if we have to decide between Milk Thistle and Artichoke I would recommend Artichoke, preferably standardised. I know how Milk Thistle is recommended for liver issues but for our case it does not address our issues directly enough.

Artichoke makes the liver produce more bile, MT does not. It is this bile producing mechanism that removes cholesterol from the liver and helps treat a condition called 'fatty liver'. The more bile you produce the more toxins you are removing from the liver, the higher chance you have of eliminating them from your body.