CFS is a metabolic condition!

[Gingergrrl]

Dr. Kundargi, in Victorville, CA, who has studied CFS since the 70's and I believe, also suffers, told me it was caused by a virus from the herpes family. He prescribes Valtrex, Valaciclovir, and Co-Q10. After 2 years, I'm relatively symptom free and really, really loving my life. I was very ill for over 26 years.

@Unduki Do you mean that you took only Valtrex and Coq10 for two years and then you were symptom free from ME/CFS? Did you do any other treatments? I was curious which viruses you were diagnosed with and what your symptoms were during the 26 year period that you were ill. It is helpful for me to hear different treatments if you are comfortable sharing. Thanks for any info and it is great to hear success stories!

 

[Aidan Walsh]

relatively symptom free?

 

[Aerose91]

Dr. Kundargi, in Victorville, CA, who has studied CFS since the 70's and I believe, also suffers, told me it was caused by a virus from the herpes family. He prescribes Valtrex, Valaciclovir, and Co-Q10. After 2 years, I'm relatively symptom free and really, really loving my life. I was very ill for over 26 years.

The one virus that has constantly popped up with me was HHV6 and I have taken 6 months of Valcyte, Valtrex and CoQ10 amongst many other things and have continued getting worse. I guess everyone reacts differently.

The other thing I'm competing with, though, is that I overexerted heavily in the beginning (I had no fatigue so I didn't know) and my damage done from those episodes seems to have made this illness more permanent and all treatments have been ineffective.

 

[Aidan Walsh]

Chronic Fatigue Syndrome is not one illness in some it's low level radiation injuries undiagnosed plus some have different forms of auto immune conditions I have heard numerous numerous times that Herpes viruses involved but that has never been proven whatsoever anti viral antibacterials have anti inflammatory properties as soon as I read this post I knew he was not recovered especially when he says relatively symptom free I wonder how many 10 mile runs he is able to do daily I would like to see his treadmill reports from cardiology...There is not a blood test for so called CFS everything is speculations there are now too many sites with different labels all across the web now from Lyme to histamine intolerance to mold to funguses to herpes viruses the list of b.s. goes on & on & on Garth Nicolson decades ago said it was 45% of the HIV virus envelope now Nancy Klimas says you can exercise yourself back to health when does all the b.s. stop now

 

[Gingergrrl]

now Nancy Klimas says you can exercise yourself back to health when does all the b.s. stop now

@Aiden Walsh When did Nancy Klimas say that you can exercise yourself back to health? I am hoping this is not true and would be horrified if it was! Do you have a link to this quote?

 

[Aerose91]

^^^ in reference to the two previous posts I still feel like anyone who is saying this is caused by radiation or mold or you can exercise your way out of it is talking about a different health condition entirely. I don't know anyone with "true" ME who fall under those parameters. This isn't a disease that is easy to manipulate or everything you try has some discernable effect, such as fatigue syndromes. This is a whole other monster.

 

[NK17]

^^^ in reference to the two previous posts I still feel like anyone who is saying this is caused by radiation or mold or you can exercise your way out of it is talking about a different health condition entirely. I don't know anyone with "true" ME who fall under those parameters. This isn't a disease that is easy to manipulate or everything you try has some discernable effect, such as fatigue syndromes. This is a whole other monster.

ME is a beast of a monstrous disease, no doubt about that and until we don't have true biomedical research funded, to uncover the main mechanism and understand the differential pathways, no intervention tried so far will make any dent.
PWME are sinking boats ...

 

[Aidan Walsh]

^^^ in reference to the two previous posts I still feel like anyone who is saying this is caused by radiation or mold or you can exercise your way out of it is talking about a different health condition entirely. I don't know anyone with "true" ME who fall under those parameters. This isn't a disease that is easy to manipulate or everything you try has some discernable effect, such as fatigue syndromes. This is a whole other monster.

The National CFIDS Foundation puts 100% of their funds into internal ionization radiation injuries their Doctors beleive this is radiation sickness & yes Nancy Klimas's team have some knid of video about exercise heart rates capacities I do not beleive in mold nor do I beleive in lyme at all total bogus

 

[Aidan Walsh]

@Aiden Walsh When did Nancy Klimas say that you can exercise yourself back to health? I am hoping this is not true and would be horrified if it was! Do you have a link to this quote?

Nancy Klimas team are now featured in a video about exercise heart rate capacities DVD of course for a fee it may have been featured this short explanation in video on Cort Johnson's site cannot recall now where I saw it though but it is out there I have never ever followed anything Nancy Klimas says do not beleive in her at all

 

[Aidan Walsh]

I will continue to follow Dr. Coimbra Neurologist from Brazil on partial vitamin D deficiencies in M.S. inlcuding cancer diabetes autism auto immune disorders treating with high doses Vitamin 'hormone' D3 with omega 3 fish oils b complex multi vitamins magnesium B2 B12 levels with 2.5 litres of water daily off all 'dairy' over 10,000 i.u. daily he is reversing illnesses now I take 50,000 daily D3

 

[Mij]

@Aidan Walsh how often do you get your vitamin D levels tested on high doses?

 

[Mij]

Nancy Klimas team are now featured in a video about exercise heart rate capacities DVD of course for a fee it may have been featured this short explanation in video on Cort Johnson's site cannot recall now where I saw it though but it is out there I have never ever followed anything Nancy Klimas says do not beleive in her at all

So you don't watch or believe anything Dr.Klimas says and yet you have an opinion on her recommedations?

Here is a short preview for anyone who is interested.

 

[MeSci]

So you don't watch or believe anything Dr.Klimas says and yet you have an opinion on her recommedations?

Here is a short preview for anyone who is interested.

I have a problem with Klimas's claim that sufferers can't improve unless they exercise. For one thing, it presents an impossible and depressing scenario for the severely affected who are over their VO2 max all the time or just from trying to speak. For another thing, my own experience has shown me that it is improvements in physical strength and ability produced by changes in diet and supplements that have brought about the ability to do a bit more, not the other way round.

I have not done ANY deliberate exercise other than occasional stretches and flexion which have been as much for the pleasure of using my strengthened muscles as anything else. I just go about my everyday activities listening to my body more and experimenting using my body in different ways to make activities easier. A notable one is using my pelvic muscles more when walking, which reduces the strain on my legs. I couldn't use them properly for years, maybe because they were surrounded by excess fat.

 

[Mij]

@MeSci I also have a problem with Dr.Klimas's claim that we can't improve unless we "exercise". Exercise improves health in general but not ME. I agree. It makes severe and moderate sufferers feel like they are in a no win situation.


For those of us (me) who can do moderate exercise under careful circumstances it can improve some symptoms (achiness, stiffness, low mood etc) but by no means has it improved my ME. It just happens I started to improve over time and not fallen worse.

I also wanted to add that there are some of us who are improving somewhat but afraid to try moving more in fear of a relapse. Not everyone knows their HR thereshold or has a doctor who can monitor them.

 

[lansbergen]

A notable one is using my pelvic muscles more when walking, .

So do I and it was not intended, it just happened

 

[knackers323]

I will continue to follow Dr. Coimbra Neurologist from Brazil on partial vitamin D deficiencies in M.S. inlcuding cancer diabetes autism auto immune disorders treating with high doses Vitamin 'hormone' D3 with omega 3 fish oils b complex multi vitamins magnesium B2 B12 levels with 2.5 litres of water daily off all 'dairy' over 10,000 i.u. daily he is reversing illnesses now I take 50,000 daily D3

What results are you getting?

 

[Aidan Walsh]

@Aidan Walsh how often do you get your vitamin D levels tested on high doses?

every couple of months but I do not really worry about vitD levels much I look at calcium bloods or if you can urine 24 calcium blood is easier plus parathyroid/parathormone levels my D level recently 640 my calcium I think was2:31 true 2:29 parahormone was 3.3 range done is 1.8 to 6.8 so 3.3 was good you must have your Doctor follow you ok plus if you have thyroid issues make sure its treated first prior to high dose D3 I feel much better but know it is a slow long process it won't happen over night plus dairy must seriously be dropped entirely no calcium supplements either get you calcium from foods vegs/fruits etc I have had a touch of pneumonia so I cut back for now until I clear this up water in my ears led to all this after not D3 I know a guy on Facebook his name is Malc Dilley he 'had' progressive Multiple Sclerosis he is recovered now on daily maintenance dose for life 20,000 he had to max out dose to get rid of illness up to 80,000 for over several months then reduced that might me my maximum dose as well it's based on 1kg body weight x 1,000 i.u. so if you are 50 kg 50,000 is your max 'Remember' Calcium can kill you so avoid 'dairy' over 10,000 daily D3 plus you need a Doctor to monitor you as well they do not use term Cure they use 'treatment for life' Partial vitamin d deficiency it is ok like once a week have a bit of cheese but no more once is a while I will eat some Edem Cheese that has Vitamin K2 in it...Vitamin D3 is actually a Master Hormone the brand I buy online is called Healthy Origins ebay or amazon should have it or online health stores I buy the 10.000 i.u. ones gel form 360 in each bottle ok bye p.s. In te new year I will test privately for histamine intolerance plus a paper recently published on phyciatrist hhv-6 'antiviral' I think post is on here somewhere from Cort I just had thyroid T4 good TSH Thyroid ok but looking into T3 but doubt it its off some say T3 is our problem but not sure 'Google T3 Dr. Skinner' who passed away recently pushed for T3 research but from what I read I do not see Marathon runners in this group if my T3 is off then let D3 fix its butt *2.5 litres of water daily to clear access calcium/hydration d3 will not work convert without omega 3 fish oils DHA/EPA in it a natural one I take 4x3,000 daily with foods all of these not empty stomache plus Japanese research says when you rise in the morning drink about litre of water prior to teeth cleaning waith one hour brush then eat Malc takes hus 20,000 at night before bed time Parkinson's Alzheimers I think they use only 10.000 i.u. D3 daily not more you can buy oil form d3 as well but gel is easier than drops

 

[Aerose91]

@MeSci

I also wanted to add that there are some of us who are improving somewhat but afraid to try moving more in fear of a relapse. Not everyone knows their HR thereshold or has a doctor who can monitor them.

I was going to say this. For some if us there is too much fear associated with expending energy due to past damage. Over 2 years ago I walked a little too far to my doctors office and have since suffered (to this point) permanent brain damage from it. The amount of my brain that got taken out by that one day of walking is massive and hasn't fluctuated, not even 1%

If a doctor told me to do graded exercise I would tell them to piss off. Maybe if the disease process is stopped, but until then I wouldnt go anywhere near it.

 

[Mij]

@Aerose91 so sorry this happened to you If doctor told me to do graded exercise I would tell them to piss off too. Personally after 23yrs of illness I've reached a point where I know how much I can do without PEM. I decide how much I can do for myself.

 

[liquid sky]

Wow, that video from Dr. Klimas sounds like a sales pitch. It reminds me of a doctor who took me for a lot of money back at the beginning of this nightmare. He claimed to have cured himself from fibromyalgia and now had the sacred cure only he could provide.

Vitamin D3 seems to be involved in ME and a lot of neurological conditions. I take 50,000 weekly per prescription, but am still below normal. Never heard of taking 50,000 a day. Definitely need a doctor to follow you on that amount. On the other hand, I would be curious if a larger dosage would finally raise my level and if that would actually ease the ME. I always thought I am just not absorbing the vitamin D properly. Would be an interesting experiment.