CFS/ M.E./ Lyme/ Sibo . How To Move Forward?

[Wendy B]

Also dealing with severe post witdhrawal syndrome from benzos given for the Alpha/delta sleep disorder common with lyme/ cfs....I'm some years off benzo but sleep is totally disabling. Can't drive, read much at all (or follow what people are saying), difficult to sit up even. Part of this is just the cfs/lyme, but the sleep prob exacerbates it 10 fold. Been peating about five months now I think. Not sure how to move forward, everything I try seems to backfire.

To address gut: Milk, fruit or juice pushthe SIBO distension (huge painful gut after consuming those). Yet eating potatoes as carbs may cause endotoxins (I feel like i tolerate potatoes much better than fruit though). I seem ok with parmesan. Antibiotics like xifaxin and neomycin in past did not help SIBO and caused horrific exhaustion without ability to sleep (though this is common reaction for me with majority of supplements and meds). ABX in penicilan or doxy class gave anaphylactic shock. I do carrot salads but don't see benefit i'm aware of.

Some (perhaps like East West healing) suggest that sibo, candida, infections, etc are not the problem, but rather that the metabolism is. Most of the advice I'm hearing is to raise my metab. Adding carbs five months ago did help energy a tad, but I'm not improving since then and further attempts to raise my metabolism seem to bring same kind of reactions...severe exhaustion, massive sugar cravings not relieved by eating sugar, insomnia/ alpha delta sleep worsening, and often dark or dim vision and mood problems.

Have tried T3 (even 1/8 of a 5 mcg pill brings exhaustion, dim vision and massive unquenchable sugar cravings), T3 with levo, dessicated thyroid (armour), and at the least get crushing exhaustion and weakness. Seems my body cannot produce the energy being requested of it, and "circuits get blown".

Coffee I frequently get exhaustion and have very bad mood drop. Aspirin I feel - just nasty. Cascara was helpful for a few weeks, then had the shakey/panic thing (never had panic or anxiety before). Recently tried B1 and 2 to improve glucose metab for better thryoid tolerance and it may help, but I get depression/ "poisoned" response to b1.

I know my sleep is the biggest issue because my body needs the sleep to have energy. I am doing everythign i can to heal from the benzo withdrawal syndrome, but feel in a catch 22...maybe cant sleep cuz im toxic, but can't get un-toxic with dietary and supplment limitations.

I've been lucky to have family support (after long time without understanding and support) and have started somatic massages (emotional and physical therapy) that help sense of wellbeing short term, but has not helped my sleep yet. Doing counseling too. Im incredibly frustrated. But do my best to find some joy...I volunteer and play as I am able.

Input appreciated. Thank you.

 

[shine]

Hey Wendy!
I was bedridden for ~3 years with CFS, I couldn't really walk without help, sometimes I had to rob over the floor to get to the toilet when nobody was home, it was really bad. I am now recovered, able to work, able to work out 3-4 times a week and able to go on "high physical activity vacations" like snowboarding again. What helped me the most was pregnenolone. I started with 5mg sublingually and increased the dose to 50mg over the course of a couple of weeks. With pregnenolone I was able to go for short walks, increasing the distance every week. What was also really helpful was Lauricidin (Monolaurin), to fight infections and SIBO. I would also recommend tyrosine, phenylalanine and BCAAs while also eating a low tryptophan diet in order to increase dopamine and lower serotonin.

I often couldn't sleep during that time because I felt "wired but tired" and also had intense pain in my legs (presumably from lactic acid). What gave me energy, reduced the pain and calmed me down before sleep was 800mg of malic acid with some magnesium. Metabolism boosters like Q10 and PQQ helped with sleep quality a lot, too.

Do you eat meat? What are your protein sources?

 

[Wendy B]

That's fantastic! What do u think was cause of ur CFS u listed a lot supplements, some I've tried with bad reactions. Haven't heard of lauricidin though. Even oil of oregano I could not tolerate. Would be awesome if pregnenolone were a life changer. I've been ill since 22. 51 now. So frustrated. Thank u for the inspiration. Oh protein...collagen, eggs, shrimp, cod. Was doing liver but thinking to maybe avoid vitamin a

 

[Wendy B]

Hey Wendy!
I was bedridden for ~3 years with CFS, I couldn't really walk without help, sometimes I had to rob over the floor to get to the toilet when nobody was home, it was really bad. I am now recovered, able to work, able to work out 3-4 times a week and able to go on "high physical activity vacations" like snowboarding again. What helped me the most was pregnenolone. I started with 5mg sublingually and increased the dose to 50mg over the course of a couple of weeks. With pregnenolone I was able to go for short walks, increasing the distance every week. What was also really helpful was Lauricidin (Monolaurin), to fight infections and SIBO. I would also recommend tyrosine, phenylalanine and BCAAs while also eating a low tryptophan diet in order to increase dopamine and lower serotonin.

I often couldn't sleep during that time because I felt "wired but tired" and also had intense pain in my legs (presumably from lactic acid). What gave me energy, reduced the pain and calmed me down before sleep was 800mg of malic acid with some magnesium. Metabolism boosters like Q10 and PQQ helped with sleep quality a lot, too.

Do you eat meat? What are your protein sources?

Magnesium I used to tolerate but ten different types even sublingual and topical give that crushing exhaustion-even with potassium and adrenal drinks. Don't know why

 

[Wendy B]

Hey Wendy!
I was bedridden for ~3 years with CFS, I couldn't really walk without help, sometimes I had to rob over the floor to get to the toilet when nobody was home, it was really bad. I am now recovered, able to work, able to work out 3-4 times a week and able to go on "high physical activity vacations" like snowboarding again. What helped me the most was pregnenolone. I started with 5mg sublingually and increased the dose to 50mg over the course of a couple of weeks. With pregnenolone I was able to go for short walks, increasing the distance every week. What was also really helpful was Lauricidin (Monolaurin), to fight infections and SIBO. I would also recommend tyrosine, phenylalanine and BCAAs while also eating a low tryptophan diet in order to increase dopamine and lower serotonin.

I often couldn't sleep during that time because I felt "wired but tired" and also had intense pain in my legs (presumably from lactic acid). What gave me energy, reduced the pain and calmed me down before sleep was 800mg of malic acid with some magnesium. Metabolism boosters like Q10 and PQQ helped with sleep quality a lot, too.

Do you eat meat? What are your protein sources?

Seems I see peaty advice to start w progesterone. When do we start w pregnenolone instead?thank u!

 

[shine]

Seems I see peaty advice to start w progesterone. When do we start w pregnenolone instead?thank u!

Pregnenolone has a strong anti-fatigue effect, and about 50% of it gets converted to progesterone anyways. Progesterone alone can be pretty sedating, while pregnenolone can promote wakefulness. The only doctor who could help me during that time, and I went to a lot, prescribed it to me and it was a real game changer. I would take it in the morning with breakfast.

Have you tried malic acid though? Without the magnesium? It really helps with producing ATP/energy and is quite cheap in powder form.

I can't tolerate oregano oil either, or most of the plant derived antibiotics, but Lauricidin is no problem. If you can tolerate a bit of coconut oil, you can tolerate Lauricidin. I had a white furred tongue and throat and also chronic sinus infection and it got rid of that. I would take 0.5g at first and then slowly increase to 3x3g per day.

 

[Wendy B]

Pregnenolone has a strong anti-fatigue effect, and about 50% of it gets converted to progesterone anyways. Progesterone alone can be pretty sedating, while pregnenolone can promote wakefulness. The only doctor who could help me during that time, and I went to a lot, prescribed it to me and it was a real game changer. I would take it in the morning with breakfast.

Have you tried malic acid though? Without the magnesium? It really helps with producing ATP/energy and is quite cheap in powder form.

I can't tolerate oregano oil either, or most of the plant derived antibiotics, but Lauricidin is no problem. If you can tolerate a bit of coconut oil, you can tolerate Lauricidin. I had a white furred tongue and throat and also chronic sinus infection and it got rid of that. I would take 0.5g at first and then slowly increase to 3x3g per day.

Thank u very much for sharing ur info!

 

[Wendy B]

Moderator I see i.posted this in ears, and eyes forum. Oooops. I thought I had started a new thread. Lots of trouble reading. Please forgive, and move to proper area. Thank u

 

[syncronicity]

Also dealing with severe post witdhrawal syndrome from benzos given for the Alpha/delta sleep disorder common with lyme/ cfs....I'm some years off benzo but sleep is totally disabling. Can't drive, read much at all (or follow what people are saying), difficult to sit up even. Part of this is just the cfs/lyme, but the sleep prob exacerbates it 10 fold. Been peating about five months now I think. Not sure how to move forward, everything I try seems to backfire.

To address gut: Milk, fruit or juice pushthe SIBO distension (huge painful gut after consuming those). Yet eating potatoes as carbs may cause endotoxins (I feel like i tolerate potatoes much better than fruit though). I seem ok with parmesan. Antibiotics like xifaxin and neomycin in past did not help SIBO and caused horrific exhaustion without ability to sleep (though this is common reaction for me with majority of supplements and meds). ABX in penicilan or doxy class gave anaphylactic shock. I do carrot salads but don't see benefit i'm aware of.

Some (perhaps like East West healing) suggest that sibo, candida, infections, etc are not the problem, but rather that the metabolism is. Most of the advice I'm hearing is to raise my metab. Adding carbs five months ago did help energy a tad, but I'm not improving since then and further attempts to raise my metabolism seem to bring same kind of reactions...severe exhaustion, massive sugar cravings not relieved by eating sugar, insomnia/ alpha delta sleep worsening, and often dark or dim vision and mood problems.

Have tried T3 (even 1/8 of a 5 mcg pill brings exhaustion, dim vision and massive unquenchable sugar cravings), T3 with levo, dessicated thyroid (armour), and at the least get crushing exhaustion and weakness. Seems my body cannot produce the energy being requested of it, and "circuits get blown".

Coffee I frequently get exhaustion and have very bad mood drop. Aspirin I feel - just nasty. Cascara was helpful for a few weeks, then had the shakey/panic thing (never had panic or anxiety before). Recently tried B1 and 2 to improve glucose metab for better thryoid tolerance and it may help, but I get depression/ "poisoned" response to b1.

I know my sleep is the biggest issue because my body needs the sleep to have energy. I am doing everythign i can to heal from the benzo withdrawal syndrome, but feel in a catch 22...maybe cant sleep cuz im toxic, but can't get un-toxic with dietary and supplment limitations.

I've been lucky to have family support (after long time without understanding and support) and have started somatic massages (emotional and physical therapy) that help sense of wellbeing short term, but has not helped my sleep yet. Doing counseling too. Im incredibly frustrated. But do my best to find some joy...I volunteer and play as I am able.

Input appreciated. Thank you.

What’s your Vitamin D status? If it’s low, you’ll have system wide issues with minerals/electrolytes and hormones, especially thyroid. Ray’s first question when folks reach out to him: “what’s your thyroid and vitamin D status? If D is low, its a good chance the pituitary is activated to regulate calcium and its disrupting everything.

I’d suggest watching Chris masterjohn’s youtube videos on vitamin D and testing. You’ll want to check 25 OH, 1,25 OH, PTH and correlate with light exposure, vitamin D intake (food and supplementing) and calcium intake. Multiple couple 1,000 ius per day upwards of 10k IUs for VD, along with proportional other fat soluble vitamins and target calcium will slowly begin to correct VD, it can take months to bring all the factors into balance, but getting VD up, PTH down will make a difference. Strive for regular consistent intake for reliable gains.

You’ll also want to make sure you are ingesting your daily intakes of calcium (and all other minerals) and that you’re getting all four fat soluble vitamins at ratios that are synergistic (look up Haidut’s estroban).

Increase your light exposure, definitely outdoors, and I’d suggest getting some 130 volt 250/500 watt lamps for indoors. I have 2x 250s @ work, and two different setups at home: 2x 500 watts and 4x 250 watts for large rooms and adjust my exposure to them according to my metabolic status. If I feel like crap, getting some light exposure can make all the difference in 15 mins.

 

[Wendy B]

What’s your Vitamin D status? If it’s low, you’ll have system wide issues with minerals/electrolytes and hormones, especially thyroid. Ray’s first question when folks reach out to him: “what’s your thyroid and vitamin D status? If D is low, its a good chance the pituitary is activated to regulate calcium and its disrupting everything.

I’d suggest watching Chris masterjohn’s youtube videos on vitamin D and testing. You’ll want to check 25 OH, 1,25 OH, PTH and correlate with light exposure, vitamin D intake (food and supplementing) and calcium intake. Multiple couple 1,000 ius per day upwards of 10k IUs for VD, along with proportional other fat soluble vitamins and target calcium will slowly begin to correct VD, it can take months to bring all the factors into balance, but getting VD up, PTH down will make a difference. Strive for regular consistent intake for reliable gains.

You’ll also want to make sure you are ingesting your daily intakes of calcium (and all other minerals) and that you’re getting all four fat soluble vitamins at ratios that are synergistic (look up Haidut’s estroban).

Increase your light exposure, definitely outdoors, and I’d suggest getting some 130 volt 250/500 watt lamps for indoors. I have 2x 250s @ work, and two different setups at home: 2x 500 watts and 4x 250 watts for large rooms and adjust my exposure to them according to my metabolic status. If I feel like crap, getting some light exposure can make all the difference in 15 mins.

Thank you. Vitamin D seems to controversial. It's 28 (30 is lowest, so just out of range), but havent done the other tests. I crave direct sun on my body and face actually painfully. I feel very depressed without it, but i also destroyed my skin doing this over the years. I was about to try vitamin d but scared to do so. Someone else suggested red light isntead for me. Calcium id say 500 - 800 mg a day with parmesan and other foods, but cant do milk or supplement yet. I get pretty good K with grapes. But always low in E and D. Some say if you aren't eating pufas we dont need as much E. Not sure on this. I could try that.

Im actually thinking to try the antibiotics again. It's been several years...the side effects are nearly intolerable, but my sibo and constipation are a mess, thinking to start there. Thank you for your input.

 

[syncronicity]

Thank you. Vitamin D seems to controversial. It's 28 (30 is lowest, so just out of range), but havent done the other tests. I crave direct sun on my body and face actually painfully. I feel very depressed without it, but i also destroyed my skin doing this over the years. I was about to try vitamin d but scared to do so. Someone else suggested red light isntead for me. Calcium id say 500 - 800 mg a day with parmesan and other foods, but cant do milk or supplement yet. I get pretty good K with grapes. But always low in E and D. Some say if you aren't eating pufas we dont need as much E. Not sure on this. I could try that.

Im actually thinking to try the antibiotics again. It's been several years...the side effects are nearly intolerable, but my sibo and constipation are a mess, thinking to start there. Thank you for your input.

There are contrarian views on just about everything and your responses suggest you are not getting what you need to heal. You can get light w/o destroying your skin by exposing your skin during the morning and afternoon - it's high noon sun along and PUFA in your skin that leads to damage. You can make sure your well nourished when you do get exposure. You should get Vitamin D in MCT as well as the others, or Haidut's Estrogen which does all five and manages the ratios so you don't have to. Being scared is a result of not being informed and allowing biased, contrarian, skeptic, etc. comments and internet copy inform your views on topics; do the homework, read-up on the topics and inform yourself and you will feel confident about the importance of Vitamin D. If at a minimum, you should get your levels in range. Red light is definitely beneficial, the 13o V lights 250/500 watts are what that is for, but you also need to address Vitamin D, which comes form UV light and food/supplements. Red light activates Cytochrome C and is helpful for energy and producing hormones. Depending on your size, it sounds like you are low on calcium intake, I think a gram upwards of 2 is preferable. Just because you are not actively eating PUFA, doesn't mean your body isn't full of it, so E should likely be something you take until you recover your metabolism (from relying on stress hormones) and then you take E as needed, but until you recover your health you will be burning PUFAs and will benefit from Vitamin E. Regular carrot, carrot salad, cascara sagrada and occasional flowers of sulfur are quite potent w/o side effects for addressing SIBO/endotoxin/constipation. Constipation is likely from low blood sugar, when ever your blood sugar gets too low adrenaline rises and directs blood flow away from the intestines towards the heart, lungs, brain, which essentially paralyzes the intestines, preventing them from functioning optimally. Increasing blood sugar and T3 are great for maintaining regulalarity. Maintaining your your blood sugar will help to avoid constipation, but when you are hit with it get on the carrot/carrot salad, cascara and get on with increasing your blood sugar. Try a Mexican coke which has sodium (helps lower adrenaline) and caffeine (circulates the blood sugar) and keep track of your constipation relative to your blood sugar levels; becoming aware of the relationship serves well. It could be that you are not yet aware of impending low blood sugar and do not correlate it with constipation. Overall, you'll likely need to simultaneously deal with both issues (gut/sibo/constipation and raising your overall fat soluble and mineral levels) at the same time, as increasing D and minerals/thyroid is the longterm solution for dealing with chronic issues while addressing acute symptoms helps towards that goal. Getting your PTH, 25OH and 1,25 OH and watching CMJ's youtube video will help you to identify if you are getting sufficient vitamin D and calcium. Ray says optimal range for Vitamin D is 50-80, but that's along with generous calcium intake, to keep calcium flowing in the healthful directions out of soft tissue and into the bones and keeping the parathyroid and pituitary hormones at bay.

 

[Wendy B]

There are contrarian views on just about everything and your responses suggest you are not getting what you need to heal. You can get light w/o destroying your skin by exposing your skin during the morning and afternoon - it's high noon sun along and PUFA in your skin that leads to damage. You can make sure your well nourished when you do get exposure. You should get Vitamin D in MCT as well as the others, or Haidut's Estrogen which does all five and manages the ratios

thank u

 

[StephanF]

Hi Wendy,

I know a woman in the Reno area that had Lyme disease and nothing had helped. Then she read about 'MMS' (chlorine dioxide) and that really helped her. She is still taking a rather high dose (3x 5 activated drops per day), which I think is too much. Chlorine dioxide is used in water sterilization at 0.5 ppm. For a 70 kg person with approximately 6.4 liters of blood, 1 activated drop will give 1 ppm (in the blood). Of course, it will quickly be absorbed by the tissue, and the half-life time of chlorine dioxide is about 1 hour. Activation of the 15% sodium chlorite solution is done either by 50% citric acid or 4% hydochloric acid (HCl). Calculating the proper chemical ratio (stoichiometery) it comes to one drop of the 50% citric acid for each four drops of the 15% sodium chlorite solution. For HCl you need two drops of it for each drop of the 15% sodium chlorite solution.

I use it as an oral rinse and then swallow it, about once a week with 4 activated drops. For the oral rinse I add a small amount of baking soda.

I have also seen the amazing fast recovery of my mom's caretaker who had arthritis with two stiff fingers but it was an early onset of arthritis, maybe a year. Within 5 days the swollen fingers knuckles and the stiffness in her fingers were completely gone!

Here is a website with testimonials on Lyme treated with 'MMS':

Lyme disease - MMS Testimonials

You can buy chlorine dioxide kits on the internet, for example Keavy's Corner (I personally like their bottle design):

Buy MMS Kit with HCl activator | 4 oz hdpe

Hope you get better soon.

Regards,

Stephan

 

[postman]

Eating a diet extremely low in vitamin A cured my insomnia. Not eating more than 3-5g of PUFA per day is also helpful. I'm still tired though. Pregnenolone did nothing for me.