Article: NK Cells/African Sleeping Sickness,Tyrosine and ME/CFS: A Professor and his Wife

Article: NK Cells/African Sleeping Sickness,Tyrosine and ME/CFS: A Professor and his

You can view the page at http://forums.aboutmecfs.org/content.php?292-NK-Cells-Blow-Out-African-Sleeping-Sickness-and-Tyrosine-A-Professor-and-his-Wife

 

Welcome to the forum! Thank you for your most interesting post. I am not one of the people here with a medical/scientific background, so can't enter into a technical conversation with you. That will happen soon enough as the US wakes up today - I'm in France so got a head start to read your posting.

I just wanted to chime in with an observation no one has ever made sense of with my husband. Rather than low cortisol levels, which seems to happen most often, in the first few years of his illness (started with a nasty virus Dec 2000) he had high cortisol levels. They were 'borderline' so of course no allo Dr's paid attention, and the naturopathic Dr's were concerned but had no real idea what was going on, other than obvious gut disturbance. I do wonder if the high cortisol was affecting his NK cell activity? Which of course has not been checked to this day.

On the positive side, some Norival and plain L-Tyrosine has just arrived, perhaps to help with anxiety - and from your posting, I'm hoping maybe more. Do you remember what dosage of Tyrosine seemed to help your wife?

 

sometimes in cfs, cortisol secreation can be back to front, instead on high in the morn and low at night, its low in the morn and high at night, this can make sleep very hard. best way to test for this i believe is a cortisol saliva test done 4 different times during the day. This maybe a good site for your husband, more to do with hormone types of fatigue but have just started a few threads on cfs, its directed at male hormonal problems and may be of assistance to you/your hubby http://www.musclechatroom.com/forum/forumdisplay.php?f=2

cheers!!!

 

Thank you for this most interesting post.

When I hear the term 'Parasitology' I think of nematodes/worms, but I'm gathering from your article that you include 'Viruses' under this umbrella? Now I'm wondering does the term 'Parasitology' include any 'invader' - worm, bacteria, virus, mould or pathogen - which saps the hosts energy reserves?

re Cortisol - my levels were high (saliva test) when I first got ill and then several years into the illness were so low that my Consultant was actually shocked (!) & wanted to prescribe Steroids. The low reading was taken at 6am (& not sure what time of day the initial sample for the higher reading was taken). Anyway - I'm still alive.

My steroid asthma spray makes my symptoms worse, but stops the asthma. Its a circular balancing act.

Thank you.

 

I have informed the writer of the article that I put it up on the Forums. Hopefully he will show up and answer some questions. I forgot to mention that he gave it to me in an email - and I posted it.

 

Hi heapsreal and pictureofhealth - most interesting input. Picture of health, you're the first I've heard of with high levels. Now if only we could get John's tested again. Maybe if I pay for it. I'll have to read up on the musclechatroom site for more info on that.

Thanks Cort, for explaining Tom is not here yet. Hope he joins soon as it seems he'd give great input and also enjoy the conversation.

 

Interesting. My case of CFS started with an unknown virus, and I relapsed into chronic ill health after a very ignorant doctor gave me erythromycin.

I wonder what that drug did?

 

I have taken tyrosine quite a lot for significant periods of time and did not find that it alleviated my ME/CFS symptoms, but rather elevated my mood and that was about it.

However, I do have a question for you:

I think parasitic infections may play a role in some of the hypersensitivity symptoms of ME/CFS. Babesia has been identified by Dr. martin Lerner and possibly others as a possible secondary infection in this illness, and one of the most well-known and most hypersensitive ME/CFS patients, Sophia Mirza (who could not tolerate light, sound, human company, most foods, chemicals, etc., and could barely move before she died), had a history of repeated bouts of malaria, which I read can become chronic with repeated exposures. I found when I got babesia from a tick bite several years ago, and ever since then, I go into a dramatic stupor-like state and have trouble maintaining wakefulness: I would not describe it as sleepy, but much more scary, i..e like being somewhere on the coma scale.

So I do wonder about CNS involvement of parasites in ME/CFS: toxoplasmosois, malaria for people like Mirza who might have traveled to areas of the world where they would have been exposed, babesia, etc. Is global hypersensitivity to stimulation (hyperacusis and beyond) common in cerebral forms of these parasitic infections? It does seem like a stupor-like state is common when they reach the brain.

And what about artemesia derivatives and tyrosine combined (artemesua derivatives for the parasitic infections, tyrosine for tyrosine depletion?).

 

i think initially cortisol is high to help fight the inflammation from infections etc etc, eventually our adrenal glands are burnt out and we are secreting low levels of adrenal hormones like dhea, cortisol and pregnenolone, then we have adrenal fatigue with our cfs. im going through the motions of sorting this out and i think it may take awhile to sort it out as when u add one hormone it effects every other hormone, so alot of trial and error to get it right, really need a good doctor and lots of blood work. I have had a couple of days of really good energy but then sleep went abit funny and felt abit anxious, but i feel like im going in the right direction. Infections are the root cause or immune defienceys but treating dysfunctional hormones helps us to keep our body strong to keep fighting on. Theres abit of a scare thing going on with xmrv and hormones but my opinion is that if our hormones are dysfunctional this increases our chances of cancers, which are quite high in cfsers, we need to modulate our hormones to keep us healthy.

cheers!!!

 

Cortisol

Welcome to the forum! Thank you for your most interesting post. I am not one of the people here with a medical/scientific background, so can't enter into a technical conversation with you. That will happen soon enough as the US wakes up today - I'm in France so got a head start to read your posting.

I just wanted to chime in with an observation no one has ever made sense of with my husband. Rather than low cortisol levels, which seems to happen most often, in the first few years of his illness (started with a nasty virus Dec 2000) he had high cortisol levels. They were 'borderline' so of course no allo Dr's paid attention, and the naturopathic Dr's were concerned but had no real idea what was going on, other than obvious gut disturbance. I do wonder if the high cortisol was affecting his NK cell activity? Which of course has not been checked to this day.

On the positive side, some Norival and plain L-Tyrosine has just arrived, perhaps to help with anxiety - and from your posting, I'm hoping maybe more. Do you remember what dosage of Tyrosine seemed to help your wife?

Hi, I taught human physiology and parasitology for 38 years. One of the responses to stress is cortisol secretion by the adrenal cortices. Cortisol will depress immune function including reducing the activity of T-cells which includes natural killer T-cells. It also increases the production of suppressor cells which raises the threshold for immune activity. As to the dosage of tyrosine...I can frankly remember. She started taking two pills a day and then backed off as she improved. Tyrosine is an essential amino acid and is part of your diet. Any excesses will be metabolized.

 

i think initially cortisol is high to help fight the inflammation from infections etc etc, eventually our adrenal glands are burnt out and we are secreting low levels of adrenal hormones like dhea, cortisol and pregnenolone, then we have adrenal fatigue with our cfs. im going through the motions of sorting this out and i think it may take awhile to sort it out as when u add one hormone it effects every other hormone, so alot of trial and error to get it right, really need a good doctor and lots of blood work. I have had a couple of days of really good energy but then sleep went abit funny and felt abit anxious, but i feel like im going in the right direction. Infections are the root cause or immune defienceys but treating dysfunctional hormones helps us to keep our body strong to keep fighting on. Theres abit of a scare thing going on with xmrv and hormones but my opinion is that if our hormones are dysfunctional this increases our chances of cancers, which are quite high in cfsers, we need to modulate our hormones to keep us healthy.

cheers!!!

High cortisol in the beginning followed by lower cortisol? - is one of the unsolved questions in CFS. There is a study that I would think should be published soon, that is examining cortisol levels as people come down with CFS following a bout of infectious mononucleosis...

Hormones certainly effect the immune system; low cortisol should keep the immune system over-active - possibly leading the NK and T-cell 'burnout' that Dr. Klimas describes.

 

Hi, I taught human physiology and parasitology for 38 years. One of the responses to stress is cortisol secretion by the adrenal cortices. Cortisol will depress immune function including reducing the activity of T-cells which includes natural killer T-cells. It also increases the production of suppressor cells which raises the threshold for immune activity. As to the dosage of tyrosine...I can frankly remember. She started taking two pills a day and then backed off as she improved. Tyrosine is an essential amino acid and is part of your diet. Any excesses will be metabolized.

Thanks for stopping by Dr., I wonder if anyone has tried tyrosine for excess sleepiness?

 

I found this discussion on another forum...Its interesting the large doses of tyrosine seemed to work for people who do well on stimulants....some people with CFS do do better on stimulants. That is alot of tyrosine, though..

http://www.crazyboards.org/forums/index.php/topic/7232-tyrosine-for-fatiguetiredness/

Has anyone tried taking Tyrosine to counteract sleepiness/tiredness?

I have a strong suspicion, after many many drug trials, that part of my depression is due to a low level of norephinephrine. I think this because Sudafed, and other less legal substances that stimulate production of norephinephrine, work well to keep me from feeling tired, but SNRI's don't. The logical conclusion seems to be that my brain doesn't make enough -- blocking re-uptake doesn't work because there's not enough there to make a difference, re-uptake or not.

So -- a couple of early studies showed that large doses of Tyrosine worked for people who needed stimulants (i.e., dexadrine) to treat their depression. The dosage was 100mg/kg/day -- so for a 150-lb person it would be something like 6 grams a day. Apparently this is safe.

I think the dosage level you're speaking of is the guideline used for people who suffer from PKU (Phenylketonuria) which is a rare genetic problem where people can not process phenlalanine, and consequently end up with very reduced levels of L-Tyrosine. In someone not suffering from PKU, taking this much L-Tyrosine is dangerous.

I take 500mg twice a day on an empty stomache. This is actually considered a high dose, and there aren't studies on the long term effects of even this level of dosage. If you decide to take it, please try starting with a low dose, see how you feel, and slowly increase to no more than 1000mgs a day.

I could not find any information about interactions between Tyrosine and SNRIs, and checking with your doctor before adding any supplement is always wise. I have read that people on stimulants for ADD may need Tyrosine supplementation if their blood levels are low to help make the medication effective, but I couldn't find anything on SNRIs.

To aid in the conversion of Tyrosine into neurotransmitters, many reccomend that you take B6, Folic Acid and Copper (all of which can be provided by taking a multi.)

I'll jump in and point out that the pathway from tyrosine to noradrenaline has dopamine as a middle
step. As a consequence, feedback from various serotonin, GABA, and acetylcholine pathways
can reduce dopamine transmission (which may mean reduced production and consequently
lower noradrenaline levels)

Ephedrine/pseudoephedrine directly act at some of the receptors activated by noradrenaline and
adrenaline. They don't actually increase production, but might tell the body there's more than
enough on-hand, and so reduce production temporarily.

The stimulants release NA/DA and some serotonin and inhibit NA/DA reuptake. While this is
going on, the body's not likely to make more (all the gas gages read "full") , making the
stereotypical speed "crash" worse, and requiring the ADHD kids to take medication "holidays"
until NA/DA stores can build back up.

Tyrosine supplementation might help the body replenish stores faster once it realizes it *is*
short of neurotransmitters, and that's not a bad thing. But, there are a number of places
that NA transmission can go "wrong" other than production: high threshold for transmitter
release/failure to release, faster than normal reuptake (both are improved by stimulants),
or faster than normal metabolism/deamination (improved by the MAOIs).

Some of the depression checklists/flowcharts do include supplementation by stimulants
or a shift to MAOIs if the depression symptoms aren't lifting to the extent needed.

If you still intend to try tyrosine supplementation you'd be far better off to try at the
500mg 1/day level for a couple of weeks than to jump straight into megadose range.
As I mentioned there are multiple systems involved with the dopamine intermediate and
they aren't the best to mess with. Another viable option would be to include more
lean meat in your diet and cut down on simple carbs. (Well, it's at least the tastier
option)

 

parasitology

Thank you for this most interesting post.

When I hear the term 'Parasitology' I think of nematodes/worms, but I'm gathering from your article that you include 'Viruses' under this umbrella? Now I'm wondering does the term 'Parasitology' include any 'invader' - worm, bacteria, virus, mould or pathogen - which saps the hosts energy reserves?

re Cortisol - my levels were high (saliva test) when I first got ill and then several years into the illness were so low that my Consultant was actually shocked (!) & wanted to prescribe Steroids. The low reading was taken at 6am (& not sure what time of day the initial sample for the higher reading was taken). Anyway - I'm still alive.

My steroid asthma spray makes my symptoms worse, but stops the asthma. Its a circular balancing act.

Thank you.

Hi, Parasites encompass any organism that injures its host in some way, e.g. robbing the host of nutrition, damaging tissue, interfering with reproduction, etc. Therefore, each taxonomic group of organisms contains parasites. Orchids are categorized as parasites as are a fish that swims into the gills of larger fish to suck blood. So, yes, bacteria, fungi, worms, protozoans etc. all are categorized as parasites. ALL VIRUSES ARE PARASITES and many virologists would agree that the majority of viruses that are out there are still unknown. My field dealt exclusively with protozoans and worms but the "rules" are similar for all parasites. Some viruses are able to attach to the host DNA and therefore are replicated each time the host cell replicates. For example, the herpes group invades the host cell DNA and thus results in a lifetime infection. Each time the host cell divides, it creates another Herpes-parasitized cell. Some believe (as I do) that in the course of human evolution SOME viral infections have infected the reproductive cells and are thus passed on to the next generation as proto-oncogenes. Proto-oncogenes are mutations which predispose individuals to particular cancers WHEN activated by other factors including other mutations and environmental factors. When activated, the proto-oncogenes become oncogenes and result in cancer.

 

Interesting. My case of CFS started with an unknown virus, and I relapsed into chronic ill health after a very ignorant doctor gave me erythromycin.

I wonder what that drug did?

Hi, I can only comment that erythromycin and theophylline are never to be taken together. I'm not schooled in pharmacology but competent pharmacists will tell you is the case. My wife's emergency room doc was a pathologist, likely trying to earn some extra money and may not have remembered his pharmacology from med school. Sorry, I can't be of more help.

 

I have taken tyrosine quite a lot for significant periods of time and did not find that it alleviated my ME/CFS symptoms, but rather elevated my mood and that was about it.

However, I do have a question for you:

I think parasitic infections may play a role in some of the hypersensitivity symptoms of ME/CFS. Babesia has been identified by Dr. martin Lerner and possibly others as a possible secondary infection in this illness, and one of the most well-known and most hypersensitive ME/CFS patients, Sophia Mirza (who could not tolerate light, sound, human company, most foods, chemicals, etc., and could barely move before she died), had a history of repeated bouts of malaria, which I read can become chronic with repeated exposures. I found when I got babesia from a tick bite several years ago, and ever since then, I go into a dramatic stupor-like state and have trouble maintaining wakefulness: I would not describe it as sleepy, but much more scary, i..e like being somewhere on the coma scale.

So I do wonder about CNS involvement of parasites in ME/CFS: toxoplasmosois, malaria for people like Mirza who might have traveled to areas of the world where they would have been exposed, babesia, etc. Is global hypersensitivity to stimulation (hyperacusis and beyond) common in cerebral forms of these parasitic infections? It does seem like a stupor-like state is common when they reach the brain.

And what about artemesia derivatives and tyrosine combined (artemesua derivatives for the parasitic infections, tyrosine for tyrosine depletion?).

Hi, I can't really comment on the artemesia and tyrosine combined/idea. However, I would like to comment on the parasite involvement for what it is worth. This is only an educated guess but I would think that the parasite involvement would be a secondary event rather than primary. If malaria was involved in CFS, we would see epidemics of CFS in malaria-epidemic countries. Rather, here in the US and Europe where malaria is rare if even existent, CFS seems to be somewhat common. Babesia is restricted to small areas of Massachusetts so again, I think the relationship is one of secondary infection. Toxo is quite common though most individuals are asymptomatic. However, Toxo (as well as malaria and...I guess Babesia) do "blossom" in immunocompromised individuals. So, what I propose (purely as an idea for discussion), does XMRV initiate the problem, cause sufficient stress that cortisol levels rise in turn suppressing immunity, and allow all of the above parasitic infections to flourish?

 

Thank you for your comments/responses Doctor Buckelew.

 

Thanks Doctor, we certainly do know that several different types of infection can trigger CFS - so it does seem to be a 'secondary problem' ie something triggers something else that causes it.

In general cortisol levels are low in CFS - which could set off its own set of immune problems. We don't know if they rise first, though, and then fall. I believe they are low in FM as well.

 

Hi Dr. Buckelew,

So glad you have joined us here. Possible parasite involvement is an interesting question for me since I lived in Africa for 15 years and India for about 2 more. I know I have been infected with a number of parasites (used to be a patient of a top parasitologist in NYC), though my supposition has been that these infections just exacerbated a pre-existing condition.

Knowing now that I am XMRV +, this still makes sense. Perhaps parasites are just part of the mudslide that bumped us into full ME/CFS expression?

Tyrosine has been good for me, though I have never taken it in high doses. Stimulants (at reasonable doses), have also been helpful. I know this is individual though.

Any other thought you have on the role of parasites in this illness would be very welcome.

Thanks,
Sushi

 

Thanks very much for your helpful responses Dr. Buckelew. I hope you will also find helpful information on the forums for your wife.