Newbie (1 yr) questions

[Kuapao]

Have many questions that I hope someone can guide me toward answers:

Pls see my profile for background info.

1. Where else can I get 2 day cpet other than dr lapp, workwell, bateman? Alreadt tried ithaca college, research studies, to no avail? Closest to Atlanta area will be awesome

2. When conducting NASA lean test, am i supposed to allow my knees to lock? Aren't even normal folks likely to pass out when knees are locked? What phrase ms did you use that successfully convinced your doxyor to conduct the nasa lean test and record in your patient chart?

3. Any cfs experienced docs in or around Atlanta? Will travel if needed, if no one else is available sooner.

4. Am on an awesome streak of 8 good days so far (the first in last 4 months), but that is through keeping off my feet and being on leave from work, so afraid it is only temporary. What types of things have you done to test your readiness to return to normal activities of dailt life, and maybe even going back to work?

5. If you returned to work from leave but crashed again, many times, and so went on leave again, what were the difficulties/challenges with disability insurance (erisa, social sec or otherwise)?

6. Is speect, qeeg, brain training actually effective? What was your experience?

7. If your me/cfs triggered due to EBV, did you take antivirals? What was the result and which doctor ordeted them for you? Did you have to convince, educ them? What literature helped convince them? E.g. me/cfs roadmap, particular study, or article?

8. Only a few members mentioned burning skin/muscle sensations. Does yours come and go like mine on mostly my back, buttocks and arms? How wad that burning explained to you by your doctors, is it really neuropathy? Are my muscles wasting awau?

Thank you in advance if anyone xan reply.

K

 

[Kuapao]

Also, I will be meeting a neurologist for the first time. What types of examinations should I expect?

I've noticed no one has replied yet. I hope someone will notice my post...should I move it to a different subforum?

 

[Kuapao]

Hi there, can anyone help?

 

[Carl#1]

Hi @Kuapao may I wish you a belated welcome to the forum.

I cannot answer most of your questions because I do not have any experience with them and I am not in the USA. I can only add a few thoughts on some of them which I will now do:

6/ I do not believe any of that stuff is effective. It is a tool of the psychology crowd and is not effective against a microbial infection which is the true underlying cause of CFS. It's like positive thinking, it might provide some help but it will not provide substantial benefit IMO. It will certainly not return you to your former self/health.

7/ Viruses do not CAUSE CFS however they can trigger it to appear in some people just like COVID-19 is doing ATM. That is because of the underlying immune system dysfunction and burden on the bodies detox systems which they had a long time before. The virus just pushes them over the edge of the detox cliff. A big part of the problem is inflammation and altered immune function which is present in CFS and a big proportion of the population because of the microbial infection(s) that I refer to. This is what can cause low/poor energy in "normal" people because they have elevated levels of inflammation within the body. A good diet, high in natural antioxidants can counter it to some degree but removing the cause is the only real solution IMO.

8/ One of the problems in CFS is that the nervous system activity near to the skin is reduced. This is a normal reaction to stress. Skin healing is usually affected. This shows in the irises as a thickened dark ring (The Scurf Rim) around the outside of the iris which indicates poor/reduced skin function and healing. It is a sign of physical stress ie high liver detox on the body. Helping the liver function should provide some assistance. Making sure the elimination channels are functioning as good as possible ie trying to resolve inevitable constipation should help a little. Deep relaxation such as meditation or better, self hypnosis might help a little.

I use Cordyceps mushroom which helps me a lot. It helps to control the immune system and does boost energy levels. Finding a very good quality extract is important because there are many which are very poor or worthless with no effect. I have been through a few before I settled on my current one Cordyceps Champion by Nutrifungi. That is available in the UK so you would need to look for something of similar specification in the USA. I get mine from a marketplace seller on Amazon.co.uk. It's expensive, the real mushroom is grown on caterpillars and cost is extremely high, think gold type of price. The one I get now cost me £35 for 150 grams a couple of days back, looking now it has risen to £37, recommended dosage is 1 gram but I take more like 3 grams at a time.

A Complete Guide to Cordyceps Supplements
Regulation of human cytokines by Cordyceps militaris
https://www.healthline.com/nutrition/cordyceps-benefits

Pure Cordyceps militaris extract 50% Polysaccharides, 25% Beta Glucans, 1% Cordycepin!

https://www.amazon.co.uk/gp/product/B0794GBXNB/

Another that I use is Green Tea extract. I am a little wary about this because of reports of problems in some isolated cases. I have reduced the amount that I take as a consequence. Mine is quite a strong extract, normal green tea should be okay because it is much weaker. A tip is to not use milk with tea because the milk renders the active ingredients inactive, it binds to them in some negative way. Research on Green Tea has shown that it alters the activity of some Liver detox enzymes. My memory on this is poor and I do not have time to check it now because I have so many things that I need to get done. It might of been that it lowers the activity of some Liver Phase 1 detox enzymes. It might of also increased the activity of certain Liver Phase 2 enzymes. That should be a good effect because having Phase 2 activity increased working to eliminate what the Phase 1 enzymes produce is helpful/beneficial.

Looking at the guides on selfhacked on cytokines and supplements/foods that alter them you might find helpful. I need to re-look at the guides to find any additions which might help me.

I am not a big fan of Grape Seed extract, I use small amounts but I am concerned that a lot of these extracts use hexane for extraction which is very harmful because it can never be 100% removed/eliminated.

I have been using TuSiZi for decades, three, yes that long. It helps with certain things that benefits me. It does seem to lower cortisol levels by supporting the kidney and HPA axis which is affected in CFS. The kidney energy is almost always affected and this causes high background cortisol levels, heightened/sensitized nervous system function and tissue/muscle breakdown. It can also be a contributory factor in insomnia. It does also have a bradycardia effect ie it lowers the heart rate which is often increased in stress.

Siberian Ginseng which is an adaptogen can also lower cortisol levels, it seems to sensitize the body to cortisol so that the body needs to produce less. That is better for resource demands but when the body is under acute stress, the sensitized cells react to the increased cortisol levels in a more dramatic way. I believe that could be why tests show that it can increase survival in various research studies. This is just a theory of mine, I have not seen any evidence that it is true but it does explain the effects of Siberian Ginseng. BTW SG is more suitable for women than the Red Korean Ginseng. I have recently restarted SG after stopping it for many years. Increased Magnesium intake seems to have stopped the problems that I was experiencing with it. It used to cause severe leg cramps whenever my blood sugar dropped ie: hypoglycaemia.

 

[JameDiagonal]

Have many questions that I hope someone can guide me toward answers:

Pls see my profile for background info.

1. Where else can I get 2 day cpet other than dr lapp, workwell, bateman? Alreadt tried ithaca college, research studies, to no avail? Closest to Atlanta area will be awesome

2. When conducting NASA lean test, am i supposed to allow my knees to lock? Aren't even normal folks likely to pass out when knees are locked? What phrase ms did you use that successfully convinced your doxyor to conduct the nasa lean test and record in your patient chart?

3. Any cfs experienced docs in or around Atlanta? Will travel if needed, if no one else is available sooner.

4. Am on an awesome streak of 8 good days so far (the first in last 4 months), but that is through keeping off my feet and being on leave from work, so afraid it is only temporary. What types of things have you done to test your readiness to return to normal activities of dailt life, and maybe even going back to work?

5. If you returned to work from leave but crashed again, many times, and so went on leave again, what were the difficulties/challenges with disability insurance (erisa, social sec or otherwise)?

6. Is speect, qeeg, brain training actually effective? What was your experience?

7. If your me/cfs triggered due to EBV, did you take antivirals? What was the result and which doctor ordeted them for you? Did you have to convince, educ them? What literature helped convince them? E.g. me/cfs roadmap, particular study, or article?

8. Only a few members mentioned burning skin/muscle sensations. Does yours come and go like mine on mostly my back, buttocks and arms? How wad that burning explained to you by your doctors, is it really neuropathy? Are my muscles wasting awau?

Thank you in advance if anyone xan reply.

K

I hpope you find the rigght cure for yourself.

 

[Kuapao]

Hi @Kuapao may I wish you a belated welcome to the forum.

I cannot answer most of your questions because I do not have any experience with them and I am not in the USA. I can only add a few thoughts on some of them which I will now do:

6/ I do not believe any of that stuff is effective. It is a tool of the psychology crowd and is not effective against a microbial infection which is the true underlying cause of CFS. It's like positive thinking, it might provide some help but it will not provide substantial benefit IMO. It will certainly not return you to your former self/health.

7/ Viruses do not CAUSE CFS however they can trigger it to appear in some people just like COVID-19 is doing ATM. That is because of the underlying immune system dysfunction and burden on the bodies detox systems which they had a long time before. The virus just pushes them over the edge of the detox cliff. A big part of the problem is inflammation and altered immune function which is present in CFS and a big proportion of the population because of the microbial infection(s) that I refer to. This is what can cause low/poor energy in "normal" people because they have elevated levels of inflammation within the body. A good diet, high in natural antioxidants can counter it to some degree but removing the cause is the only real solution IMO.

8/ One of the problems in CFS is that the nervous system activity near to the skin is reduced. This is a normal reaction to stress. Skin healing is usually affected. This shows in the irises as a thickened dark ring (The Scurf Rim) around the outside of the iris which indicates poor/reduced skin function and healing. It is a sign of physical stress ie high liver detox on the body. Helping the liver function should provide some assistance. Making sure the elimination channels are functioning as good as possible ie trying to resolve inevitable constipation should help a little. Deep relaxation such as meditation or better, self hypnosis might help a little.

I use Cordyceps mushroom which helps me a lot. It helps to control the immune system and does boost energy levels. Finding a very good quality extract is important because there are many which are very poor or worthless with no effect. I have been through a few before I settled on my current one Cordyceps Champion by Nutrifungi. That is available in the UK so you would need to look for something of similar specification in the USA. I get mine from a marketplace seller on Amazon.co.uk. It's expensive, the real mushroom is grown on caterpillars and cost is extremely high, think gold type of price. The one I get now cost me £35 for 150 grams a couple of days back, looking now it has risen to £37, recommended dosage is 1 gram but I take more like 3 grams at a time.

A Complete Guide to Cordyceps Supplements
Regulation of human cytokines by Cordyceps militaris
https://www.healthline.com/nutrition/cordyceps-benefits


https://www.amazon.co.uk/gp/product/B0794GBXNB/

Another that I use is Green Tea extract. I am a little wary about this because of reports of problems in some isolated cases. I have reduced the amount that I take as a consequence. Mine is quite a strong extract, normal green tea should be okay because it is much weaker. A tip is to not use milk with tea because the milk renders the active ingredients inactive, it binds to them in some negative way. Research on Green Tea has shown that it alters the activity of some Liver detox enzymes. My memory on this is poor and I do not have time to check it now because I have so many things that I need to get done. It might of been that it lowers the activity of some Liver Phase 1 detox enzymes. It might of also increased the activity of certain Liver Phase 2 enzymes. That should be a good effect because having Phase 2 activity increased working to eliminate what the Phase 1 enzymes produce is helpful/beneficial.

Looking at the guides on selfhacked on cytokines and supplements/foods that alter them you might find helpful. I need to re-look at the guides to find any additions which might help me.

I am not a big fan of Grape Seed extract, I use small amounts but I am concerned that a lot of these extracts use hexane for extraction which is very harmful because it can never be 100% removed/eliminated.

I have been using TuSiZi for decades, three, yes that long. It helps with certain things that benefits me. It does seem to lower cortisol levels by supporting the kidney and HPA axis which is affected in CFS. The kidney energy is almost always affected and this causes high background cortisol levels, heightened/sensitized nervous system function and tissue/muscle breakdown. It can also be a contributory factor in insomnia. It does also have a bradycardia effect ie it lowers the heart rate which is often increased in stress.

Siberian Ginseng which is an adaptogen can also lower cortisol levels, it seems to sensitize the body to cortisol so that the body needs to produce less. That is better for resource demands but when the body is under acute stress, the sensitized cells react to the increased cortisol levels in a more dramatic way. I believe that could be why tests show that it can increase survival in various research studies. This is just a theory of mine, I have not seen any evidence that it is true but it does explain the effects of Siberian Ginseng. BTW SG is more suitable for women than the Red Korean Ginseng. I have recently restarted SG after stopping it for many years. Increased Magnesium intake seems to have stopped the problems that I was experiencing with it. It used to cause severe leg cramps whenever my blood sugar dropped ie: hypoglycaemia.

Thank you, Carl for your advice. I was not aware of selfhacked and will check it out. Accepting the chronic nature of what I might have is a big hurdle for me. I do appreciate your sharing your experiences. I learned a quick lesson that I have to take my time incorporating each supplement and giving my body time to react or adjust or reject. I realize something is out of whack in my body, causing the widespread inflammation and ensuing fatigue and pains, but it is hard to admit that I might have had contributed to its imbalance (sedentary lifestyle, in particular). I am working on that and learning to listen and act within its current confines of reduce energy. It sounds like I must find ways unique to me that support the self-healing mechanisms of my body. Even if some very encouraging developments are being made in me/cfs research, treatments are a long way.

I am encouraged by long haulers like you who keep up the fight.

I hope you and whoever else reads this finds a single thing to make them smile today.

Take care!

 

[Kuapao]

Update:

I was lucky to have obtained an appointment with Dr Lapp yesterday due to cancellation. I have found him to be thorough and empathic.

Will return for 2nd day CPET. Return to work is to be determined. I no longer have job protection rights under fmla and my short term disability is still under appeal. Kinda in limbo. Want to work, feel compelled to for financial security, but don't want to set myself back since my tolerated activity level is now so low.

My challenge when returning home to GA from NC is monitoring my mental exertion. I believe I have succeeded enough with physical.

Armed with additional support from Dr Lapp, I expect my pain, sleep and exertion to be managed better.

All for now.

 

[Kuapao]

I got an answer from Bateman Center about locking knees during NASA lean test. No, you should not allow them to lock during the test.