My Experience With Dr. Kaufman at the Open Medicine Institute

[xena]

thanks @Gingergrrl ! I'll post after tomorrow's appointment when I hopefully have some more information!

 

[Gingergrrl]

thanks @Gingergrrl ! I'll post after tomorrow's appointment when I hopefully have some more information!

@xena Sounds good and I hope your appt went well!

 

[jeff_w]

@jeff_w I think the reason I am so fascinated by your progress is b/c our history and symptoms were so similar and we see the same doctor except that you have made a miraculous recovery and I have not.

Miraculous! Ah! My recovery has been fast, but I still have a way to go before I can even work a part time job. I'm not acutely sick anymore, but compared to a healthy person, I'm definitely sick. But I know exactly what you mean.

And please know I am not saying this to make you feel bad or guilty in any way. I feel genuine happiness and hope at your story. So I am trying to figure out if there is anything that I can do differently to improve my own recovery. I can't change the age difference but maybe can change some of the other factors.

Thanks! I'll tell you everything I'm doing.

Did you ever have the bruising?

I never had bruising, not even as part of active mono. Dr. K. have any theories?

Also, what did you mean that you had paralysis b/c I have never had that. Could you literally not move? Did you feel that your breathing was paralyzed or your muscles? Just want to understand.

It happened like this. I was 100% bedridden last July, except for trips to the restroom, and sometimes I needed to lean on someone's shoulder or use a walker to get there. I was trying to get out of bed to make my way to the restroom, but I couldn't get out of bed. I called for my dad. He helped get me to my feet, but I couldn't support my own weight. I collapsed on the floor and couldn't move. I could still breathe, but it was difficult. I barely managed to whisper and explain what was wrong. My body was no longer under my control at all. I couldn't move my own body. This happened twice. The first time was combined with acute chest pain, and I was rushed to the emergency room.

1) Saline was a disaster for me and both my doctors do not think I should do it again b/c not safe for me.

Could you do fluid loading, instead? This is done by drinking massive amounts of electrolytes very quickly, first thing in the morning, and then again multiple times per day. I wonder if that would be safe for you. Also, do you have your electrolyte levels tested regularly? From time to time I have low sodium, so I need to add it to electrolyte drinks that already have a lot in them.

2) I'm taking an anti-viral (Famvir) for almost six months but my EBV and VZV titers are unchanged and ironically the VZV IgM actually went up! Did your actual viral titers go down? Did your NK functioning improve?

On Valcyte alone, my EBV titers initially went down. Then they spiked back up, which Dr. K. called a "reactivation." My NK functioning went from 15 during my first visit with Dr. K, down to 7 during my last visit. Yet, I'm much improved. Dr. K. said that the labs don't reflect all that is going on.

3) My only attempt with LDN was a failure as we discussed but I will bring this up with Dr. K and will re-consider as long as I start really low and it does not give me insomnia, does not push me into hyper-thyroid, and I can still take painkillers on the days that I need them.

Sounds good! I'd recommend trying 1/4 of a 0.25 dose at night. Why start in the morning when you're going to have to switch to night anyway? The switch to night could throw you off. If that tiny dose gives you no insomnia, don't bump it up. Stay on it for a week, just to acclimate.

4) I take a million supplements but want to compare them to what you took when you have a chance.

I'm taking an inventory this afternoon, to order more of what I need, and I'll write everything on here. There are so many!

I had the sleepy fatigue and the sickly fatigue for a long time. I literally could not stay awake and felt feverish, hot/freezing chills and just very, very sick. This had gone away with Famvir or with time (I don't know which) but nothing else has improved and has actually worsened.

I'm sorry to hear it. What does Dr. K. say?

Another thing that I can't tolerate are things that move like a flashing light or spinning circle. The footer on the bottom of CNN and other news channels is so distracting for my brain that I can't follow the verbal news while it is there and we have to cover the bottom of the TV with a pillow to block it out. That tells me that something is wrong with my brain b/c I used to be able to multi-task a million things at once in my former career.

I had that *exact* problem. When I'd watch TV shows with flashing lights, I'd have to look away or change the channel. It was too distracting and made me dizzy, exhausted, and nauseous.

It doesn't matter and you still did it and don't have to minimize your recovery. I am genuinely happy for you and I hope to learn from your recovery.

Thank you! I will post my supplements when I go through them this afternoon. I could list some by memory now but I want to post the full list.

I am feeling that if Famvir was going to help me, it would have already done so.

Maybe so, but it coincided with your "sickly fatigue" going away. I'd stay on it for that reason, but that's just me!

I am also becoming less scared of trying Valcyte

I tried it out of pure desperation, and it's helping. You might feel worse on it before you feel better. It magnified my fatigue at first, and I felt like I was in a hazy fog of sickness for a month. It was very worth it.

I have never asked Dr. K. how my recovery (or lack of) compares to others but I do agree that yours has been very fast!

I wondered about this because it occurred to me that your recovery might not be abnormal. Don't compare yourself to me, Dr. K. officially said I'm abnormal. If Dr. K. said that you're doing as expected, wouldn't it be good to know?

Your answers have been very helpful and I really appreciate it.

Glad to help. I want you to get better.

ETA: I just checked my BP and it is 87/59 which usually correlates with when I am feeling this bad. Jeff, do you get this low BP, too?

Mine only got that low when my sodium was too low. Has yours been checked lately?

 

[jeff_w]

@jeff_w i'd love to hear about the supplements you're taking,, especially the gut related ones.

Are they possibly the 'glutamine, zince.. carnitine, coenzyme Q10, and lipoic acid; and curcumin' mentioned in Michael Maes' paper "Normalization of leaky gut in chronic fatigue syndrome (CFS) is accompanied by a clinical improvement"?

Add NAC to that list, and you got it!

side note: i'm a new patient of Dr. Kaufman's going for a first follow up tomorrow. this thread makes me rather optimistic!

Good luck and keep us posted.

 

[Sushi]

Another thing that I can't tolerate are things that move like a flashing light or spinning circle. The footer on the bottom of CNN and other news channels is so distracting for my brain that I can't follow the verbal news while it is there and we have to cover the bottom of the TV with a pillow to block it out.

This is a really common symptom for us. I have always thought it was related to ME/CFS patients being "above the middle" on the scale between coma and seizure. In other words, our neuron activity has been said to be over-active--excitotoxicity (sorry about the inexact language!). I have a lot of strategies for blocking out flashing lights and squiggly moving things. I think I might have a seizure if I were in a room with strobe lights.

Whenever I see something like this on TV or in a film, I have to close my eyes. When I am driving, even the sun shining through trees on the side of the road as I drive by is too much for me. I keep a baseball cap in the car to block out things like that.

Sushi

 

[jeff_w]

@Gingergrrl @xena

Supplements I'm Taking
​

Pregnenolone 30mg (morning and afternoon) - My serum Preg level was 10 before doing this
Vitamin D (25,000mg every other day, 5,000mg every other day)
Flax Seed Oil (2-3 Tbs per day)
Fish Oil (1 capsule per day)
NADH 20mg sublingually every morning
CoQ10 powder 800mg (morning and afternoon)
NAC 600mg (afternoon and evening)
Zinc Carnosine 8mg (2 tabs with each NAC dose)
Curcumin with Bioperine 750mg capsules (2 pills in the afternoon)
L-Carnitine Tartrate 1,000mg (afternoon)
Liposomal Glutathione 375mg (evening)
B-Complex which includes methyl Bs (afternoon)
Sublingual 5mg Methyl B12 (afternoon with B-Complex)
Methylfolate 15mg (afternoon with B-Complex)
Potassium Gluconate 595mg (2 pills afternoon with B-Complex)
Magnesium Citrate 250mg (afternoon)
Melatonin 3mg (night)
Epicor 500mg (night)
NOW Probiotic (25 Billion, night)

Homemade Electrolyte Drink (1 Liter Daily)
1L of generic V8 juice
500mg Potassium Chloride Powder
800mg Magnesium Citrate Powder
1,000mg of Salt

 

[Gingergrrl]

@jeff_w @Sushi I am totally wiped out from doing blood work this morning for my upcoming Endo appt (and the remaining tests for Dr. K) and too exhausted to reply to everything today even though I really want to!!!

Thank you both for all the additional info and Jeff for the supplement list (quite impressive !) I tried several things from your list at different times that I was not able to tolerate (which I'm sure is shocking for everyone .) I will respond tomorrow or maybe later this evening if I feel better- my BP is still in the 80's/50's and I am feeling really weak but at least now all those tests are done.

 

[zzz]

Another thing that I can't tolerate are things that move like a flashing light or spinning circle. The footer on the bottom of CNN and other news channels is so distracting for my brain that I can't follow the verbal news while it is there and we have to cover the bottom of the TV with a pillow to block it out. That tells me that something is wrong with my brain b/c I used to be able to multi-task a million things at once in my former career.

This is a really common symptom for us. I have always thought it was related to ME/CFS patients being "above the middle" on the scale between coma and seizure. In other words, our neuron activity has been said to be over-active--excitotoxicity (sorry about the inexact language!). I have a lot of strategies for blocking out flashing lights and squiggly moving things. I think I might have a seizure if I were in a room with strobe lights.

@Sushi, that sounds very much like what Dr. Cheney was saying in his well-known talk, Cheney on Klonopin: Protecting the Brain. That always made a lot of sense to me, too. It turns out that Dr. Goldstein had described this process in a bit more detail about four years earlier, in the summary section of the Introduction in his book Betrayal by the Brain:

The basic problem is the misperception of the saliency of sensory information by the prefrontal cortex...

Norepinephrine enhances the “signal-to-noise (STN) ratio” in the processing of sensory input by the brain. If there is a high STN ratio, important information will be extracted from a welter of sensory input. If STN ratio is low, much more sensory input will reach the cerebral cortex, some of it irrelevant. STN ratio is low in [ME/CFS] patients, accounting for misperception of sensory information, as well as distractibility in stimulus situations where cues are increased - environments as disparate as malls and short-term memory testing.

Substance P (SP) lowers STN ratio. There is a “Yin-Yang” relationship between NE and SP – when one is high the other is low. NE metabolites are low in [ME/CFS] and SP levels are quite elevated.

 

[xena]

aww hope you feel better @Gingergrrl !!

My tests were negative for, like, everything except for possible evidence of HHV 6 reactivation, a functional NK of 4, and odd thyroid levels (and "nonexistent" ADH). Dr. Kaufman suggested taking mushrooms (not the fun kind ) and thyroid hormone, and Valtrex and treating likely SIBO.

I had a mild case for seven years (improving from 60 to 80%) which started to worsen in May 2014 to around 30% following the development of GI troubles. I made an appointment to see Dr. De Meirleir later in the month in Reno to hopefully shed some light on that part of it. I think I might be in the 15% not virally triggered category but I guess more testing will tell.

nice list @jeff_w (fyi that's the ninja smiley).

 

[Gingergrrl]

@xena Thanks for the update and I plan to reply to you and everyone tomorrow and still feeling really weak from my blood tests this morning. Glad you had a good appt and good use of the Ninja smiley (b/c I had not seen that one before!)

 

[Gingergrrl]

@jeff_w

Miraculous! Ah! My recovery has been fast, but I still have a way to go before I can even work a part time job. I'm not acutely sick anymore, but compared to a healthy person, I'm definitely sick. But I know exactly what you mean.

Jeff, sorry for my delayed reply and I want to re-phrase what I said b/c when I said miraculous I hope it didn't sound that I was minimizing how hard you have worked in your treatment or that you were now fully well. I know you still have a long way to go to re-gain your life and grad school. But the speed and depth of your recovery has been miraculous to me and it gives me hope that these things are possible.

I never had bruising, not even as part of active mono. Dr. K. have any theories?

No, no doctor yet has had any theory on the bruising so I am just trying to accept that it started with the EBV & Mono (and can't be good!) but can't be too horrible or someone would figure it out. I even saw a hematologist a few months after I had mono and she ran tests which came out normal so she felt the bruises would just dissipate with time.

It happened like this. I was 100% bedridden last July, except for trips to the restroom, and sometimes I needed to lean on someone's shoulder or use a walker to get there. I was trying to get out of bed to make my way to the restroom, but I couldn't get out of bed. I called for my dad. He helped get me to my feet, but I couldn't support my own weight. I collapsed on the floor and couldn't move. I could still breathe, but it was difficult. I barely managed to whisper and explain what was wrong. My body was no longer under my control at all. I couldn't move my own body. This happened twice. The first time was combined with acute chest pain, and I was rushed to the emergency room.

Wow, I am so sorry and that sounds really scary. Nothing like that has happened to me which is why your recovery is so incredible to me b/c you started even sicker than I was (from this description) but in four months of treatment you have made so much ground and in six months of treatment for me, I am the same or worse! But hopefully with Valcyte, I will make some of the gains that you did.

Could you do fluid loading, instead? This is done by drinking massive amounts of electrolytes very quickly, first thing in the morning, and then again multiple times per day. I wonder if that would be safe for you. Also, do you have your electrolyte levels tested regularly? From time to time I have low sodium, so I need to add it to electrolyte drinks that already have a lot in them.

I have to admit that I really struggle with drinking enough and on the average day of literally forcing myself to drink, I manage six to eight cups. I do better with Vitalyte than with anything else I have tried to drink.

On Valcyte alone, my EBV titers initially went down. Then they spiked back up, which Dr. K. called a "reactivation." My NK functioning went from 15 during my first visit with Dr. K, down to 7 during my last visit. Yet, I'm much improved. Dr. K. said that the labs don't reflect all that is going on.

I agree and I don't think a lot of the viral labs reflect much of anything anymore but that is just my opinion.

Sounds good! I'd recommend trying 1/4 of a 0.25 dose at night. Why start in the morning when you're going to have to switch to night anyway? The switch to night could throw you off. If that tiny dose gives you no insomnia, don't bump it up. Stay on it for a week, just to acclimate.

I am going to ask Dr. K what he thinks about LDN for me since my previous attempt was with my ND. But if I start Valcyte, I am only going to try one new thing at a time and that would be my priority.

I had that *exact* problem. When I'd watch TV shows with flashing lights, I'd have to look away or change the channel. It was too distracting and made me dizzy, exhausted, and nauseous.

Do you still have this problem? I literally cannot watch anything with flashing or moving parts and have to look away.

Maybe so, but it coincided with your "sickly fatigue" going away. I'd stay on it for that reason, but that's just me!

I am going to see if Dr. K thinks I should continue taking Famvir with the Valcyte or stop it altogether. I will let you know what happens.

I wondered about this because it occurred to me that your recovery might not be abnormal. Don't compare yourself to me, Dr. K. officially said I'm abnormal. If Dr. K. said that you're doing as expected, wouldn't it be good to know? Glad to help. I want you to get better.

Thank you and I know you want me to get better and that is so sweet of you.

Mine only got that low when my sodium was too low. Has yours been checked lately?

My sodium is always on the low end of the normal range even though I eat tons of salt and take "Salt Stick" tablets every day. I just had all the electrolytes tested yesterday as part of the tests for my Endo (I also have Hashimoto's disease) so I will find out next week.

 

[Gingergrrl]

This is a really common symptom for us. I have always thought it was related to ME/CFS patients being "above the middle" on the scale between coma and seizure. In other words, our neuron activity has been said to be over-active--excitotoxicity (sorry about the inexact language!). I have a lot of strategies for blocking out flashing lights and squiggly moving things. I think I might have a seizure if I were in a room with strobe lights.

Whenever I see something like this on TV or in a film, I have to close my eyes. When I am driving, even the sun shining through trees on the side of the road as I drive by is too much for me. I keep a baseball cap in the car to block out things like that.

@Sushi Have you ever actually had a seizure from this type of thing? I have not but your explanation makes total sense to me. One of my very best friends in the world has epilepsy and she cannot tolerate looking at flashing or moving things and it is identical to what I experience (except I do not have epilepsy.)

@Sushi, that sounds very much like what Dr. Cheney was saying in his well-known talk, Cheney on Klonopin: Protecting the Brain. That always made a lot of sense to me, too. It turns out that Dr. Goldstein had described this process in a bit more detail about four years earlier, in the summary section of the Introduction in his book Betrayal by the Brain:

@zzz Thank you for the added explanation on this and I am reading about it in the Goldstein book but not familiar with Cheney's talk (unless I am and just not remembering it!) I don't want to derail Jeff's thread again but from your post (and Goldstein's book) can you explain what "Substance P" means?

 

[Gingergrrl]

@xena

aww hope you feel better @Gingergrrl !!

Thank you and I am not feeling better yet but more hopeful today that I can get there.

My tests were negative for, like, everything except for possible evidence of HHV 6 reactivation, a functional NK of 4, and odd thyroid levels (and "nonexistent" ADH). Dr. Kaufman suggested taking mushrooms (not the fun kind ) and thyroid hormone, and Valtrex and treating likely SIBO.

My NK was 5 so we are the same. I also have thyroid issues (Hashimoto's disease) and non-existent ADH. I assume you are talking about the AHCC mushrooms LOL. It is good your other tests were negative, so don't worry about that! Did he test you for SIBO or did you have that test somewhere else?

I had a mild case for seven years (improving from 60 to 80%) which started to worsen in May 2014 to around 30% following the development of GI troubles. I made an appointment to see Dr. De Meirleir later in the month in Reno to hopefully shed some light on that part of it. I think I might be in the 15% not virally triggered category but I guess more testing will tell.

Do you mean you had a mild case of SIBO or ME/CFS for seven years? Sorry I am confused and just want to clarify. What are your main symptoms now? Best wishes with your appt to KDM in Reno.

 

[jeff_w]

Jeff, sorry for my delayed reply and I want to re-phrase what I said b/c when I said miraculous I hope it didn't sound that I was minimizing how hard you have worked in your treatment or that you were now fully well. I know you still have a long way to go to re-gain your life and grad school. But the speed and depth of your recovery has been miraculous to me and it gives me hope that these things are possible.

Thanks. When I think of a "miraculous" recovery, I imagine being able to go to the gym again, handling full time school with energy to spare, etc. I knew what you meant though and wasn't offended. And I'm glad my recovery gives you hope!

Wow, I am so sorry and that sounds really scary. Nothing like that has happened to me which is why your recovery is so incredible to me b/c you started even sicker than I was (from this description) but in four months of treatment you have made so much ground and in six months of treatment for me, I am the same or worse! But hopefully with Valcyte, I will make some of the gains that you did.

Yes, I hope Valcyte works out great for you.

I have to admit that I really struggle with drinking enough and on the average day of literally forcing myself to drink, I manage six to eight cups. I do better with Vitalyte than with anything else I have tried to drink.

IMO, it is really important for you to fluid load because your symptoms are SO heavily autonomic/cardiac-based.

I am going to ask Dr. K what he thinks about LDN for me since my previous attempt was with my ND. But if I start Valcyte, I am only going to try one new thing at a time and that would be my priority.

He currently prescribes my LDN, so I'm sure he'd be on board. Good idea about doing Valcyte alone first.

Do you still have this problem? I literally cannot watch anything with flashing or moving parts and have to look away.

No, that has completely gone away.

I am going to see if Dr. K thinks I should continue taking Famvir with the Valcyte or stop it altogether. I will let you know what happens.

My strong bias is to take both at once, because once I began taking both, my recovery really sped up. Your mileage may vary, of course.

My sodium is always on the low end of the normal range even though I eat tons of salt and take "Salt Stick" tablets every day. I just had all the electrolytes tested yesterday as part of the tests for my Endo (I also have Hashimoto's disease) so I will find out next week.

Mine is too, and I supplement with sodium as well. The more I supplement, the better I feel, and the less OI I have. Maybe you could try taking more along with drinking more. Who knows, maybe that will do something positive?

 

[Gingergrrl]

@jeff_w

​

Pregnenolone 30mg (morning and afternoon) - My serum Preg level was 10 before doing this​

Vitamin D (25,000mg every other day, 5,000mg every other day)
Flax Seed Oil (2-3 Tbs per day)
Fish Oil (1 capsule per day)
NADH 20mg sublingually every morning
CoQ10 powder 800mg (morning and afternoon)
NAC 600mg (afternoon and evening)
Zinc Carnosine 8mg (2 tabs with each NAC dose)
Curcumin with Bioperine 750mg capsules (2 pills in the afternoon)
L-Carnitine Tartrate 1,000mg (afternoon)
Liposomal Glutathione 375mg (evening)
B-Complex which includes methyl Bs (afternoon)
Sublingual 5mg Methyl B12 (afternoon with B-Complex)
Methylfolate 15mg (afternoon with B-Complex)
Potassium Gluconate 595mg (2 pills afternoon with B-Complex)
Magnesium Citrate 250mg (afternoon)
Melatonin 3mg (night)
Epicor 500mg (night)
NOW Probiotic (25 Billion, night)

I really wanted to respond to your supplement list and it is very detailed and thank you for posting it!

From your list, I currently take: Vit D, CoQ10, B-complex (minus B-12 & folate), prescription Potassium, Magnesium Malate and Magnesium Sulphate by nebulizer, Melatonin, Epicor, and two probiotics.

The ones from your list that I tried but were not able to tolerate were: Fish oil, Methyl B-12 & Folate and Carnitine.

The ones I used to take but stopped b/c I never noticed anything were: NAC, Zinc, Liposomal Glutathione

The ones from your list that I have never tried: Pregnenolone, Flax seed oil, NADH & Curcumin

What I take that is not on your list is: Monolaurin, AHCC mushrooms, Selenium, Calcium, Liposomal Vitamin C, Salt Stick Tablets, Taurine, and Digestive enzyme.

Can you tell me (later of course!) what the ones are for that I bolded? Thanks again!!!

 

[jeff_w]

I've had a breakthrough.

(Background: This is my fifth month on Valcyte and the end of my first month on Famvir + Valcyte. I also take LDN, OI meds, and many supplements listed earlier in this thread.)

Here's the breakthrough: I now feel better engaging in activity than NOT engaging in activity. For example, today I walked 2 blocks away from home and back--briskly. Afterward, I felt energized for the rest of the day. This is a brand new development over the past three days. (When I say "energized," I don't mean I felt like a fully healthy person. I mean it in the relative sense.)

Granted! I walked 2 blocks... I didn't run for several miles like I used to do regularly before getting sick. There is still no way I could briskly walk much more than a few blocks (I think?). I don't want to push myself to my PEM limit, so I'm starting out slowly. Before ME/CFS, I would constantly test my physical limits. I'm not doing that now. I want to, but that would be idiotic.

It turns out that, for several days, I have been *losing* energy by staying in bed and resting. Activity--both mental and physical--now energizes me. Whether it be walking, web design, or talking to friends. This is exactly what happens with "healthy" people. I almost can't believe this.

I don't want to come across as boasting about this. I want to track my progress as well as show that healing can happen.

 

[Sushi]

@Sushi, that sounds very much like what Dr. Cheney was saying in his well-known talk, Cheney on Klonopin: Protecting the Brain. That always made a lot of sense to me, too. It turns out that Dr. Goldstein had described this process in a bit more detail about four years earlier, in the summary section of the Introduction in his book Betrayal by the Brain:

Yes, my source for this was both Dr. Cheney and Rich, who also posted about it. Here is a quote from Rich:

We have evidence that there is excitotoxicity in both CFS and FM now. It is known that excitotoxicity can kill neurons. It is known that neurons are generally not replaced. There is published evidence from quantitative MRI studies that the gray matter volume decreases over time in CFS, FM, and most recently, in Gulf War Illnesses. The gray matter is composed of neurons. In view of these facts, I think it is reasonable to suspect that excitotoxicity is responsible for the decrease in gray matter volume in CFS. This last statement is, however, an unproven hypothesis.

He spoke of this issue to indicate the "urgency for care."

@Sushi Have you ever actually had a seizure from this type of thing? I have not but your explanation makes total sense to me. One of my very best friends in the world has epilepsy and she cannot tolerate looking at flashing or moving things and it is identical to what I experience (except I do not have epilepsy.)

No, I have never had a seizure. I get the feeling that "I can't stand this," and close my eyes or block it in some other way. It is interesting thought that Ken Wilbur, who "got" ME in 1985 in the Incline Village outbreak (and thus has been sick longer than many of us) did have grand mal seizures a few years ago. I guess this is just a reminder that it could happen.

Though my problem with this has not gone away like @jeff_w's has, it is much better.

Sushi

 

[xena]

Thanks @Gingergrrl !
I already had the SIBO test booked with my GI doc... tho she doesn't seem to really know what's up so I'd rather have someone else treat.

Of course! Mild case of ME/CFS for several years- only fatigue and PEM, but with a much much higher threshold than today. Today my main symptoms are fatigue, brain fog, and PEM. Less disruptive but present: headaches, digestive problems, noise sensitivity (but not much light sensitivity.. go figure?), sleep disruptions, and POTS.

What's your story @Gingergrrl ? Please link me to another thread if you've already written it up!

 

[jeff_w]

@jeff_w

I really wanted to respond to your supplement list and it is very detailed and thank you for posting it!​

The ones from your list that I have never tried: Pregnenolone, Flax seed oil, NADH & Curcumin.

Can you tell me (later of course!) what the ones are for that I bolded? Thanks again!!!

@Gingergrrl

Pregnenolone is a neurosteroid involved in many bodily functions. When mine was tested, it was below the bottom of the reference range. Taking it makes me feel better. Here's a great blog post on Pregnenolone by a guy with CFS/ME.
http://quixoticmeblog.blogspot.com/2012/01/pregnenolone-replacement.html

Flax Seed Oil suppresses the inflammatory cytokine IL-6. That particular cytokine is highly correlated with the subjective experience of fatigue. There is peer-reviewed scientific research on this. You can read abstracts by going to Google Scholar and googling "flax oil" and "IL-6." When I started taking this, I noticed a difference, though it wasn't as dramatic as with the Pregnenolone.

NADH also has a lot of peer-reviewed scientific research on it. Here's the article title, you can google this: "Lipid Replacement Therapy with a Glycophospholipid Formulation with NADH and CoQ10 Significantly Reduces Fatigue in Intractable Chronic Fatiguing Illnesses and Chronic Lyme Disease Patients." NADH has majorly decreased my brain fog and improved overall alertness.

Curcurmin also has a lot of peer-reviewed scientific research supporting it. It has anti-inflammatory properties and can act as an immunomodulator. If you're going to take it, you need to take the kind with Perine in it in order to make it bioavailable. I notice a subtle positive difference from the curcumin. You can find out more about it using Google Scholar.

 

[Gingergrrl]

What's your story @Gingergrrl ? Please link me to another thread if you've already written it up!

@xena thanks for sharing your story and best wishes moving forward. My story unfortunately is spread out through a bunch of different threads in a very disjointed manner as different things occurred! But feel free to PM me if you have any questions or if I can be of any help.

@jeff_w Thanks for the follow-up info on the supplements and I am going to look into those in more detail and may ask you some more questions later .