Dr Hive - anyone with lyme? EBV?

[gardenmom5]

I'm on a couple EBV support groups, and asked about some odd (and capable of being very debilitating) symptoms I've had for several years.  It has waxed and waned.  It can be annoying, or shut me down and leaving me in pain and exhausted for the better part of a day.  One EBV group had several people who reported similar.  Another one said it sounded like something associated with Lyme.  (for which I haven't been tested.)  - and yeah, coconut water (high in electrolytes) is helpful. So has my complete mineral supplement.  I'm working on starting the AIP diet.  (and have finally been better about having eliminated all sugars/sweeteners - except condiments; dairy, yeast breads, others limited; etc. I can already feel inflammation going down.)   I do have thyroid and adrenal issues, so those are complicating nailing things down.

so - does this sound familiar to anyone?

  

My muscles will contract - starting with my trunk and moving outwards - until they can't contract any more. They will lock, and then release. It is debilitating Almost like a convulsion - but it's not really a convulsion. They are fatiguing, and it can make me need to just go lay down.  they can leave me in a lot of pain all over.  It is associated with physical activity - including merely standing up and walking across a room.  (those are the bad days.)

I've mentioned it to a couple drs (NDs, MDs are worse) - and neither one had any clue what i was talking about to the point they pretty much ignored it in favor of those issues I had they understood.

I have only talked with one person who even knew what I was describing - a friend that is a nurse and had two patients with this, but she didn't know the cause. The first time it happened, the dr thought the patient was faking because he'd never even heard of anything like this. Then another patient had it. She still didn't know a cause.  I have no had an opportunity to query her further - but I do have more questions about it for her.

eta: when I was pg with dudeling - I would have what felt like low magnesium 'cramps', but in my arms instead of my legs.  (it makes me thinking of them, only 100Xs worse.)  they went away as soon as he was born.  It was a miserable pregnancy, but I felt 1000% better right after he was born.

Edited April 11, 2021 by gardenmom5

[cougarmom4]

Which muscles contract for you? All over or specific one/s?

I have a similar muscle contraction to what you are describing. Mine is only in one muscle—shoots up from my back through my neck and into the back of my head. Happens at least once a day, some days several times, and it is so so painful. It is very hard to get the contraction to release. 

Edited April 11, 2021 by cougarmom4

[gardenmom5]

48 minutes ago, cougarmom4 said:

Which muscles contract for you? All over or specific one/s?

I have a similar muscle contraction to what you are describing. Mine is only in one muscle—shoots up from my back through my neck and into the back of my head. Happens at least once a day, some days several times, and it is so so painful. It is very hard to get the contraction to release. It does seem that often I move in a certain way to trigger the contraction. I’ve mentioned it to two different doctors, both of which said it didn’t sound like a big deal. But it is a big deal...very debilitating. And I need recovery time laying on my bed afterwards.

I have struggled for several years with quite a few health issues and have been to a few different doctors, though I have not found anyone who will do more than run a blood test or two and give me a prescription. To be honest, I feel as though they think it is all in my mind and I have just kind of given up. I had EBV in my early 20s and my gut feeling is that it is related to that (not the muscle convulsion, my energy issues and muscle pain) I’ve been diagnosed with fibromyalgia, adrenal fatigue and severe depression.

Would you mind sharing the EBV forums?

starts with my sides, then into the full trunk, then upper arms, down my hands.  my legs will also tighten. so will my jaw.  If I'm standing - It's like becoming a statue - only everything continues to be drawn in tighter and tighter.  but - it's not really stationary.  it's tiring, sometimes nauseating.  If I do too much, it can trigger it, so I have to be careful how much I do.  there are days I feel like I accomplish nothing - and the memories of my childhood and the negative messages I received come roaring back.  Dh is supportive though, he loves me just because I'm here.

this is entirely separate from an abdominal muscle I have that will spasm.  That one is muscle damage from 2dd - she REALLY liked to kick it/push on it (I frequently had my hand parked there to push back on her foot) when I was pregnant with her!  It's annoying when it goes, usually triggered by a sneeze when I'm bending over the wrong way.

 

The EBV forums are on FB.  Epstein-barr virus the silent disease, and healing from EBV.   both are fairly active.

they all talk about how it will "hide"  (my dr was suspecting it is hiding in my liver - a favorite place - and was the source of my liver stuff. so she ran the early antigen test.  the lab initially ran the antibody test - 95% of the population has antibodies - and mine were 600+, which is high.  my EA was high too.)  I also strongly suspect it's hiding in my sinuses, as I've had sinus issues for years, but usually when I go complain to a dr, they "can't find anything."  yeah - so why am I chronically congested, and get so many sinus infections?  one insisted I didn't have one - a couple months later I had a kidney infection, and was put on a strong antibiotic.  It was quite graphic that it was clearing up a sinus infection too.  It also explains my weakened immune system.  

there have been a few who hypothesize fibro is a by product of EBV.  I've also heard of a connection to adrenals.  Have they done any early antigen tests on you?  it will tell if the virus is actively replicating.  Some have reported to respond well to antiviral (I'm currently doing three months, and could be prolonged depending upon results), others haven't had improvement from it.   (some cycle through the different antivirals to get positive results.

Monolaurin (ecological formulas from my ND.  pharmica is cheaper than amazon for 300mg, but amazon has a 600mg capsule pharmica doens't.) has been reported as an important part of EBV treatment, no matter what is going on.  just start low and slowly build up the dose.  My dr also has my on "biofilm Phase 2 advanced" (helps breakdown the virus shell, and one of the few that works on herpes viri.), and H2Plx both from priority one. those are some of the supports.

there is also the AIP diet.  anti-inflammatory protocol.  I did a similar one years ago - and within a month, I felt fabulous, had more energy than I had ever had, could think clearly, the dry skin on my legs was gone. but it's really strict, and was hard with little kids.

[gardenmom5]

1 hour ago, cougarmom4 said:

 adrenal fatigue and severe depression.

Would you mind sharing the EBV forums?

dysfunctional adrenals can also cause depression.

oh yeah - there have been times when I get like this adrenal cortex (desiccated adrenal gland) from thorne has helped.  I forgot, because if I take too much, it causes problems so I have to be really careful with how much I take.  I try to take it only on busy days, and it has headed off things.

it makes everything confused - I don't know if this is adrenal, or the EBV.  but then someone asked if I had been tested for Lyme . . .

 

do you do any adrenal supports?  there are some good ones on the market.  I'm allergic to holy basil leaf, so that wipes out 50% of the supports on the market.  But most people are fine, and it is a good herb for adrenal support.

[tagglelim]

Hey! I don't post here often, but read frequently. So, I am in the middle of dealing with weird symptoms too and a potential Multiple Sclerosis diagnosis. What you are describing kinda sounds like an "MS Hug". Has a doctor ever looked that direction?

[gardenmom5]

2 minutes ago, tagglelim said:

Hey! I don't post here often, but read frequently. So, I am in the middle of dealing with weird symptoms too and a potential Multiple Sclerosis diagnosis. What you are describing kinda sounds like an "MS Hug". Has a doctor ever looked that direction?

no.  I've been having these for about five years, started about the same time I increased my MTHF dose (which has since been cut in half.)

 and now you're scaring me.   dh's aunt had MS.

[ktgrok]

18 minutes ago, tagglelim said:

Hey! I don't post here often, but read frequently. So, I am in the middle of dealing with weird symptoms too and a potential Multiple Sclerosis diagnosis. What you are describing kinda sounds like an "MS Hug". Has a doctor ever looked that direction?

I was thinking the same thing. 

[Spy Car]

26 minutes ago, tagglelim said:

Hey! I don't post here often, but read frequently. So, I am in the middle of dealing with weird symptoms too and a potential Multiple Sclerosis diagnosis. What you are describing kinda sounds like an "MS Hug". Has a doctor ever looked that direction?

Should it prove to be MS, I might suggest reading a book called the MS Recovery Diet by Ann Sawyer. About 15 years ago I worked on an alternative health series where we profiled Sawyer. I saw all the interview footage that was shot with her (and that of numerous people she was able to help through diet) and read her book, coming away very impressed.

In the first part of the work she describes how MS acts on the body in pretty detailed (but comprehensible) terms. She then goes on to describe her hypothesis of how inflammation associated with dietary triggers can evoke a cascade of responses in the body that  exacerbate the destruction of the myelin sheath, which causes "short-circuiting" of muscles, etc. She explains it better than I. The goal is myelin preservation.

Sawyer identifies a number of foods that act as "triggers" for most people with MS including: dairy, legumes, eggs, grains with gluten and yeast--not items that are easy to give up, but...

She advocates for removing these from the diet and also looking out for what she calls "individual trigger foods" that set off flares in some people but not in others.

She doesn't suggest diet is a cure for MS, but just a complimentary way to keep damage to myelin down to the absolute minimum.

Of all the people we profiles for our series, Sawyer was the person who most impressed me. I'm not a proponent of "woo." Nor am I a doctor or a scientist. But what she said made sense to me and cutting out "trigger foods" seems like it has helped many people who have incorporated these dietary changes into their approach.

I hope you get good news. Thanks for posting. I also had MS cross my mind as a possibility.

And wishing you the best @gardenmom5

https://www.amazon.com/MS-Recovery-Diet-Identify-Disease/dp/158333288X

Bill

 

[GoVanGogh]

I was thinking possible MS, too. 
 

i have EBV, Hashimoto’s thyroid, celiac and fibro. I started having some odd symptoms several years ago. Like, I would wake up and be unable to roll over in the bed bc my muscles would be so stiff and I couldn’t get any of my muscles to move. I was a runner, weight lifter and indoor cyclist at the time, and this stiffness and muscle heaviness would be terrible. I would be unable to lift a bag of groceries or walk up a flight of stairs.  I tried to ignore symptoms for a while bc I was afraid it was MS. I finally went to dr and was sent to neurologist. After a year of testing and ruling out other issues (such as Lyme), he diagnosed me with young onset Parkinson’s. It has been a bit over a year since diagnosis and I am doing much better now, due to medications, supplements and diet and even more exercise than I thought possible. I find if I move, it is easier to keep moving! 
 

if you want to look more into diet, I suggest the Wahl’s protocol book. It was written by a doctor with MS, but was recommended to me as a good all around anti inflammatory diet. 

[gardenmom5]

I know diet makes a difference in how I feel (no sugars - of any kind, no yeast, no dairy (though butter is OK), limited fruit.  (well, before I did zero fruit, except for canned tomatoes.).  so, mostly meat and vegetables.  I'm seeing repeatedly on different anti-inflammatory diets: no eggs - so that's going to require a work around as I do better with protein at each meal.  (some have no pork, and I'm sick of chicken.  I think I feel better when I eat beef because it is higher in carnitine.) and while peanut butter is easy, I do seem to do better without it.   I've been referred to the AIP diet - which is also about reducing inflammation.  coconut water is beneficial because it is high in electrolytes, and I had noticed previously it helps.  otherwise - limited juice (which even unsweetened are high in fructose.)

, and yoga was fabulous, - but after injuring my knee, twice . . . (unrelated to yoga), it had been hard to get back to it.  I'm actually feeling worse on the meds, but the hope is they help in the long run and I'll do better when i'm off them.   

and moving helps - except somedays it seems so hard.  I'm selling my nordic track skier, as I don't have the balance anymore.  2ds has a treadmill, which I struggle to work, but I can hold onto something and walk.  (I live in a steep hill.)

It was all made more complex caring for myself because I was trying so hard to help dudeling - and fighting the school district to do so.

[Spryte]

I had Lyme and a whole constellation of co-infections - some viral.  It took a long, long time to get diagnosed and MS was one of my first (mis)diagnoses.  (I actually used the great book mentioned by Spy Car.) I had similar symptoms, but also neuropathy.  Very painful.

Rather than write a mini-novel on Lyme and company, I’ll just say if you pursue Lyme testing - know that there are false negatives.  IGenex is the best lab.  And definitely test for co-infections. Feel free to reach out with specific questions.  

My current doc is a LLMD, she’s treated me for 16 years, and is also treating DS for bartonella, a co-infection.  He has had Lyme, babesiosis and bartonellosis as well.  Hazard of where we live.  It can be hard to find a good LLMD though.

[gardenmom5]

1 minute ago, Spryte said:

I had Lyme and a whole constellation of co-infections - some viral.  It took a long, long time to get diagnosed and MS was one of my first (mis)diagnoses.  (I actually used the great book mentioned by Spy Car.) I had similar symptoms, but also neuropathy.  Very painful.

Rather than write a mini-novel on Lyme and company, I’ll just say if you pursue Lyme testing - know that there are false negatives.  IGenex is the best lab.  And definitely test for co-infections. Feel free to reach out with specific questions.  

My current doc is a LLMD, she’s treated me for 16 years, and is also treating DS for bartonella, a co-infection.  He has had Lyme, babesiosis and bartonellosis as well.  Hazard of where we live.  It can be hard to find a good LLMD though.

that's actually comforting.

I'm redoing bloodwork this week - so we'll see where things go from here.

[Spryte]

1 minute ago, gardenmom5 said:

that's actually comforting.

I'm redoing bloodwork this week - so we'll see where things go from here.

I’m glad.  I lived with the MS diagnosis for about a year from both my  neuro and rheumie, and then went to the MS neuro in our area - the Big One, the MS guru.  He wasn’t so sure it was MS.  
 

So ... back at my regular NP, I shared my frustration.  She had dinner that night with her BFF - a vet.  And mentioned my case.  Her friend, the vet, said, “That sounds like Lyme!” So NP called the next day, we started testing and the results were confusing.  She was not convinced it was Lyme, and the neuro and rheumies had tested me, too.  All negative.  But NP tested me for babesia, another tick borne disease, and it was kind of positive, so ... it was confusing.

From there, things started rolling, we got a LLMD involved and I tested positive for Lyme via PCR.  And 13 more infections!  It was crazy.  Took about four years of hard core treating, and we still tweak things now, ten years later.

Lyme isn’t the answer for everything, and it’s crummy to treat it, but my story had a better outcome than we feared when we were really worried.

I hope you get answers.  Mystery illnesses are miserable.
 

 

[ktgrok]

10 minutes ago, Spryte said:

I’m glad.  I lived with the MS diagnosis for about a year from both my  neuro and rheumie, and then went to the MS neuro in our area - the Big One, the MS guru.  He wasn’t so sure it was MS.  
 

So ... back at my regular NP, I shared my frustration.  She had dinner that night with her BFF - a vet.  And mentioned my case.  Her friend, the vet, said, “That sounds like Lyme!” So NP called the next day, we started testing and the results were confusing.  She was not convinced it was Lyme, and the neuro and rheumies had tested me, too.  All negative.  But NP tested me for babesia, another tick borne disease, and it was kind of positive, so ... it was confusing.

From there, things started rolling, we got a LLMD involved and I tested positive for Lyme via PCR.  And 13 more infections!  It was crazy.  Took about four years of hard core treating, and we still tweak things now, ten years later.

Lyme isn’t the answer for everything, and it’s crummy to treat it, but my story had a better outcome than we feared when we were really worried.

I hope you get answers.  Mystery illnesses are miserable.
 

 

Vets are way more up on vector borne diseases than most human doctors. And they do full tick panels, not just lyme! 

Edited April 12, 2021 by ktgrok

[BlsdMama]

I was treated for Lyme and it's complicated.


If you're looking for a good serious supplement, I'd look at Leap2BFit. (It seeks to supplement needs but has in it a host of necessary supplements and saves me a rather lot of $$, not the least of which is a few different forms of curcumin.) 

 2nd, Lyme is exacerbated by diet.  Stay away from sugar and that means fruit too.  Berries should be the only fruit.  Diet should be Wahls or Whole 30 - though obviously not if your specific scenario doesn't work well on keto.  Supplement methylcobalamin sublingually.  Lyme folks tend to struggle with B12 levels.  

Edited April 12, 2021 by BlsdMama

[tagglelim]

Sorry, I don't know how to quote yet. Thank you for the book recommendation, Spycar!

And I'm sorry if I scared you, Gardenmom5. I certainly hope it's not MS.

I have to agree with a previous poster - the not knowing is hard.

[gardenmom5]

1 hour ago, BlsdMama said:

I was treated for Lyme and it's complicated.


If you're looking for a good serious supplement, I'd look at Leap2BFit. (It seeks to supplement needs but has in it a host of necessary supplements and saves me a rather lot of $$, not the least of which is a few different forms of curcumin.) 

 2nd, Lyme is exacerbated by diet.  Stay away from sugar and that means fruit too.  Berries should be the only fruit.  Diet should be Wahls or Whole 30 - though obviously not if your specific scenario doesn't work well on keto.  Supplement methylcobalamin sublingually.  Lyme folks tend to struggle with B12 levels.  

the no-sugar I did years ago, was no fruit.  because fruit has fructose.  and milk has lactose . . (so no dairy either.)  I did it, and felt great - but it's hard with littles.  if berries are allowed - I can make a slushy with frozen berries.  
did you have a favorite cookbook or recipe site?  are the wahls and whole 30 basically keto?  I need recipes. 

 1ds's gf was doing really well on keto - so well in fact, her drs told her to stop because it was messing with her meds and they needed more information.  she has uncontrolled epilepsy.  They kind that drs say "you're an interesting case".  

1 hour ago, tagglelim said:

Sorry, I don't know how to quote yet. Thank you for the book recommendation, Spycar!

And I'm sorry if I scared you, Gardenmom5. I certainly hope it's not MS.

I have to agree with a previous poster - the not knowing is hard.

to quote - there's a "quote" ?button? in the lower left of each post.  to single quote - click on the "quote", to multi-quote click on the + sign next to it.

 

I have reasons to think it's not - but it will be in the back of my mind.   I've lived with not knowing about this for years despite asking multiple drs, who all wanted to focus on my liver numbers.   my latest dr actually listened to me, and said "you know, it could be EBV as that would fit these things.  and it likes to hide in the liver and drive up numbers."  And I've likely had it reactivating off and on for years.   

[Spryte]

6 hours ago, gardenmom5 said:

the no-sugar I did years ago, was no fruit.  because fruit has fructose.  and milk has lactose . . (so no dairy either.)  I did it, and felt great - but it's hard with littles.  if berries are allowed - I can make a slushy with frozen berries.  
did you have a favorite cookbook or recipe site?  are the wahls and whole 30 basically keto?  I need recipes. 

 1ds's gf was doing really well on keto - so well in fact, her drs told her to stop because it was messing with her meds and they needed more information.  she has uncontrolled epilepsy.  They kind that drs say "you're an interesting case".  

to quote - there's a "quote" ?button? in the lower left of each post.  to single quote - click on the "quote", to multi-quote click on the + sign next to it.

 

I have reasons to think it's not - but it will be in the back of my mind.   I've lived with not knowing about this for years despite asking multiple drs, who all wanted to focus on my liver numbers.   my latest dr actually listened to me, and said "you know, it could be EBV as that would fit these things.  and it likes to hide in the liver and drive up numbers."  And I've likely had it reactivating off and on for years.   

Oh!  May I ask which liver numbers?  Enzymes?  AST and ALT?  How high?  I have a mystery thing going on, and this explanation has not come up.  It’s interesting! I do have EBV.  Would you mind sharing more or pointing me to a place I can read?  Pm is fine, if that’s better.  I’d like to share this with my liver doc, while she’s investigating what’s going on.  Thanks!

[gardenmom5]

2 hours ago, Spryte said:

Oh!  May I ask which liver numbers?  Enzymes?  AST and ALT?  How high?  I have a mystery thing going on, and this explanation has not come up.  It’s interesting! I do have EBV.  Would you mind sharing more or pointing me to a place I can read?  Pm is fine, if that’s better.  I’d like to share this with my liver doc, while she’s investigating what’s going on.  Thanks!

AST and ALT.  High, I'm regarded as having fatty-liver.  Hepatitis was clear, so the first few drs I worked with, ignored everything else. 

My current one is the first one who listened to *everything* else I was saying about my health and stopped treating things separately (because things are generally connected, and why you want a holistic approach), and ran the early antigen.  (I had an eye infection from hell years ago, and my health hasn't been the same since.)

yoga (especially with twisting postures) - is the one thing that brought my numbers down into really good territory (better than just diet). partly of why I'm so frustrated I haven't been able to get back to it.  there are poses that are aimed at liver support.  I felt so good while doing it - then I slipped on the ice and injured my knee, and a year later was hit head on reinjuring it. (that accident was actually a 3rd person's fault.)  I do shiatsu-massage and that helps too.   that focuses on the lymph system.

I feel horrid on these meds, (the herxheimer reaction was bad, lysine helped, then things got confused) so I'm hoping things will get better, but I have another three odd weeks left (of three months).  I go in this week for blood work.

eta: on the EBV groups, and my current dr - EBV will hide in the liver and drive up numbers.  I don't have anything I can give you to read.  My dr sent me a bunch of stuff - but it's in my files. (which aren't as organized as they should be.)

Edited April 12, 2021 by gardenmom5

[BeachGal]

Have you ever tracked your daily diet? It is very hard to get the minimum RDAs for potassium and magnesium. For example, fewer than 2% meet the RDA for potassium (RDA changed from 3500 to 4700 mg). Magnesium deficiency is also bad. Tracking for just a short period can be very eye opening. If you are interested, I like https://nutritiondata.self.com. It's a PITA but does show the weak areas.

I know you're not asking, but you might want to look into some of the more cutting-edge treatments that a few MDs are using. The MD I really like is Matt Cook, an MD anesthesiologist who works in regenerative medicine. He is in Silicon Valley, Los Gatos, and works with a lot of the top tech people helping them to resolve their health problems. He is very successful but uses unusual treatments and modalities, all safe but not used by many others. Matt went to med school in Washington state and did his residency in California and also did a fellowship (I think) in China. He's a very nice, humble guy and if you wouldn't want to work directly with him, he might have some recommendations in Washington. If you want to learn more about his treatments, he has a podcast called BioReset.

https://www.bioresetmedical.com

 

ETA

Fatty liver is not unusual in people like me who need way more choline due to genes. The choline is needed in the liver to move the fat out. Chris Masterjohn has written about this and has a free gene processor at his website that tells you how much choline you need.

https://chrismasterjohnphd.com/tools/2019/07/27/much-choline-eat-genetic-calculator/

High insulin can cause it, too. Many people have normal A1Cs but can still have high insulin. (Because, besides diet, cortisol and muscle mass, etc. can affect insulin. People who experienced a lot of trauma in life tend to have high baseline cortisol levels all their life without proper treatment to reduce it.) Benjamin Bikman has written a book called Why We Get Sick about health and how it is affected by insulin. It's only about $15 for the Kindle version. I'm reading it now and highly recommend it.

https://www.amazon.com/Why-We-Get-Sick-Disease_and/dp/194883698X

Edited April 12, 2021 by BeachGal

[Spryte]

Thanks for sharing the liver info, it’s very interesting.  I’ll do some reading and talk to my doc.  I have one of those priceless docs who look at the whole picture, too (my LLMD) but I haven’t seen her in person since the liver issues started screaming to the forefront of everything so we have not yet discussed.

Yoga - off to Google.  One more thing that may or may not help in that area (I have not tried because I’m too much acute pain at the moment) ... my doc does visceral manipulation, has been very helpful for abdominal issues in the past, but I don’t know specifically about liver.  I wonder if it might help, while you can’t do yoga?  

Herx reactions.  Ouch.  Hang in there.  (Meaningless babble: my username, Spryte, is actually derived loosely from herx reactions. Ha!  I drank lemon water alllll the time, trying to hydrate - something about lemon was supposed to help. I don’t recall how it came about exactly - something about lemon and Lyme, and then the lemon-lime flavor of Sprite - old commercial - and a IRL friend in a Lyme support group said I was full of lemons and Lyme, so Spryte. It made sense at the time. 🤣)

 

 

 

Edited April 12, 2021 by Spryte

[gardenmom5]

33 minutes ago, BeachGal said:

Have you ever tracked your daily diet? It is very hard to get the minimum RDAs for potassium and magnesium. For example, fewer than 2% meet the RDA for potassium (RDA changed from 3500 to 4700 mg). Magnesium deficiency is also bad. Tracking for just a short period can be very eye opening. If you are interested, I like https://nutritiondata.self.com. It's a PITA but does show the weak areas.

I know you're not asking, but you might want to look into some of the more cutting-edge treatments that a few MDs are using. The MD I really like is Matt Cook, an MD anesthesiologist who works in regenerative medicine. He is in Silicon Valley, Los Gatos, and works with a lot of the top tech people helping them to resolve their health problems. He is very successful but uses unusual treatments and modalities, all safe but not used by many others. Matt went to med school in Washington state and did his residency in California and also did a fellowship (I think) in China. He's a very nice, humble guy and if you wouldn't want to work directly with him, he might have some recommendations in Washington. If you want to learn more about his treatments, he has a podcast called BioReset.

https://www.bioresetmedical.com

 

ETA

Fatty liver is not unusual in people like me who need way more choline due to genes. The choline is needed in the liver to move the fat out. Chris Masterjohn has written about this and has a free gene processor at his website that tells you how much choline you need.

https://chrismasterjohnphd.com/tools/2019/07/27/much-choline-eat-genetic-calculator/

High insulin can cause it, too. Many people have normal A1Cs but can still have high insulin. (Because, besides diet, cortisol and muscle mass, etc. can affect insulin. People who experienced a lot of trauma in life tend to have high baseline cortisol levels all their life without proper treatment to reduce it.) Benjamin Bikman has written a book called Why We Get Sick about health and how it is affected by insulin. It's only about $15 for the Kindle version. I'm reading it now and highly recommend it.

https://www.amazon.com/Why-We-Get-Sick-Disease_and/dp/194883698X

and even with supplmenting - it's hard to get enough potassium - I base that I'm low on the heart palps that will disappear if I eat a banana (rich in potassium.)  I also do well with coconut water - rich in potassium.

what do you do to get your potassium up?  I did sups in the past, but you have to take so many!  (for a while, I was doing NUUN with five or six potassium capsules to equal a coconut water.)

yeah - cortisol . . .  (yoga helps that too . .  . ) does a number on adrenals too.

Very interesting about the choline.  do you supplement?

27 minutes ago, Spryte said:

Thanks for sharing the liver info, it’s very interesting.  I’ll do some reading and talk to my doc.  I have one of those priceless docs who look at the whole picture, too (my LLMD) but I haven’t seen her in person since the liver issues started screaming to the forefront of everything so we have not yet discussed.

Yoga - off to Google.  One more thing that may or may not help in that area (I have not tried because I’m too much acute pain at the moment) ... my doc does visceral manipulation, has been very helpful for abdominal issues in the past, but I don’t know specifically about liver.  I wonder if it might help, while you can’t do yoga?  

Herx reactions.  Ouch.  Hang in there.  (Meaningless babble: my username, Spryte, is actually derived loosely from herx reactions. Ha!  I drank lemon water alllll the time, trying to hydrate - something about lemon was supposed to help. I don’t recall how it came about exactly - something about lemon and Lyme, and then the lemon-lime flavor of Sprite - old commercial - and a IRL friend in a Lyme support group said I was FIL of lemons and Lyme, so Spryte. It made sense at the time. 🤣)

 

 

 

yoga with adrienne is good on you-tube.

List of 77 health benefits of Yoga

the lysine has helped with the herx.   It's also possible my potassium /electrolyte levels were down.

[gardenmom5]

57 minutes ago, BeachGal said:

 

Fatty liver is not unusual in people like me who need way more choline due to genes. The choline is needed in the liver to move the fat out. Chris Masterjohn has written about this and has a free gene processor at his website that tells you how much choline you need.

https://chrismasterjohnphd.com/tools/2019/07/27/much-choline-eat-genetic-calculator/

 

Seven egg yolks per day?  (or equivalent) - So just over 1000 mgs . . . 

[BeachGal]

15 minutes ago, gardenmom5 said:

and even with supplmenting - it's hard to get enough potassium - I base that I'm low on the heart palps that will disappear if I eat a banana (rich in potassium.)  I also do well with coconut water - rich in potassium.

what do you do to get your potassium up?  I did sups in the past, but you have to take so many!  (for a while, I was doing NUUN with five or six potassium capsules to equal a coconut water.)

yeah - cortisol . . .  (yoga helps that too . .  . ) does a number on adrenals too.

Very interesting about the choline.  do you supplement?

 

1 minute ago, gardenmom5 said:

Seven egg yolks per day?  (or equivalent) - So just over 1000 mgs . . . 

I design my meals to meet potassium and even then, it's difficult to get 4700 mg because I eat low carb and low sat fat. So no potatoes for me which are very high in potassium. 😞 Using that nutrition data website, I typed up a list of foods we eat and then entered serving size, net carbs, protein, potassium and magnesium. Potassium and net carbs are the two I pay the most attention to because the others are easier to supplement. I get recipes from Diet Doctor Plus, Jason Fung's site. They are tasty!

I don't take potassium supplements because I have heard too many scary stories of people coming close to ODing on them, even with just Lite Salt. A small dose is probably fine especially if you know what symptoms warrant a visit to the ER. Potassium foods for me: Certain greens, salmon, avocados, milk, lots of coffee, certain veggies, nuts, seeds.

Everyone in my family needs the equivalent of 8 eggs, and 7 is high, too. I eat at least 1 whole egg and 1 egg yolk every morning cooked with 2 tablespoons of olive oil and salt and supplement as well with krill oil. Here is how you figure what you need:

• 40% of krill oil is phosphatidyl choline (PC).
• 13% of PC is choline

Using Kirkland's Krill Oil as an example, which I take (red bottle), each softgel contains 500 mg of krill oil. So for 2 softgels -- 1,000 mg krill oil:

• 40%  x 1,000 mg krill oil = 400 mg PC
• 13%  x    400 mg PC       =    52 mg choline  <--- so 52 mg choline in 2 Kirkland softgels. I take 6-8 softgels per day.

I try to get choline and betaine, which Masterjohn explains at his site, from my daily diet as well -- egg yolks, salmon, ikura and might try beef liver because that contains a lot. Here's another article about choline:

https://www.vitalchoice.com/article/secret-brain-saver-in-meat-and-seafood