ILoveSugar History

[Such_Saturation]

:1

 

[tara]

post 99961 I'm thinking about going to *ask* for a spinal tap for the potential diagnosis of either ms or cidp - in fact I just got a referral to an ms specialist today. I don't have herpes but there is Epstein Barr in me. Is it really that likely to be unsafe? If a person's white blood count is normal, for example, is there still the risk you're discussing?

I've some bad stories.
You really don't want anything at all to go wrong in the spinal column.
I'd avoid it unless it was a critical emergency with no alternative.

MRI seems much less risky, and may give more useful info too.

 

[tara]

ILS,

I'm sorry you lost your fiancee.

Does hiatial hernia belong on the list?

Since you've tried so many Peaty ideas, I wonder if have or could check urine pH a few times? Might give another clue or two to work with. Ideally, 6.3 - 6.7. If it averages much above or below that, I think it can mess with many things, including nutrient use.

 

[iLoveSugar]

Yes, I was diagnosed with a hiatal hernia as well a couple years back via a CT scan.

 

[answersfound]

post 99930 So for as much as I complain and moan, I figured it would be best to log everything into one long post. For what it's worth, I am a 30 year old male, weight about 150, look pretty decent with an athletic build, but feel like complete S**T!!!

Growing up, I had allergies quite bad, had some stomach discomfort at times, didn't have the stamina my friends had, but other than that was pretty normal until about age 14. I remember the day to a "T", I was in class in 7th grade, had terrible stomach pains, had to use the restroom and the teacher wouldn't let me. My stomach got worse, and the pain intensified Around the same time, I woke up in the morning with a severe stiff neck, that made it so that I could not look left or right. It was severe pain. This last for about 3-5 days. From that day on, I absolutely dreaded school as my stomach was always in pain, gas pain, having to use the restroom, etc. I fought with my Mother daily until I was in 10th grade about dropping out of school. After the long 3 year fight, she finally gave in. Every single time I left my house, I mapped out where I was going as my bowels hurt so bad, and I had absolutely no time to go to the bathroom. Other than that though, neurologically and mentally, I could still live my life and enjoy time with friends. I had no anxiety or anything. By age 18, I finally opened up about my stomach issues with my family doc, who sent to me to a physciatrist, and from then on, I was trialed with Prozac, Effexor XR, Wellbutrin, Zoloft, as well as a few other SSRI's that I can not remember. None of them ever seemed to help me. Coming of the Effexor was a nightmare.

By age 19, 1 year later, I had my first colonoscopy. I was diagnosed with esophageal inflammation, along with IBS. Funny because I never had heartburn or anything. Throughout the next year or so, I was hospitalized many times due to severe stomach pain since I still ate bad food. I would be hunched over in pain so bad, many times it was hard to get to the ER.

2 years later, after still muddling through, I went to a different GI, had another scope, this time was diagnosed with Crohns colitis (never heard of this combo), along with proctitis. From then on, I decided it was time to take matters into my own hands and start eating well. I opted for the GAPS/SCD diet. For the most part, my severe stomach pain settled, but it turned into complete constipation. Of course I opted for bananas and almond flour since the GAPS diet was so restrictive. Throughout the next year or so, I still did have a few episodes of bad bad stomach pain, hospitalized me, 2 more colonoscopies. By age 25, I had 4 scopes, and roughly 30-40 ER trips. That kept saying proctitis and colitis.

This is where I really started to decline. When I was 26, I met Josh Rubin from East West Healing. I was following his advice. After about a year with him, he ventured into the world of Peat. I started following Peat recommendations. I remember coaching my sons baseball game, and kept feeling woozy and faint. It was scary since all eyes were on me. I went to a chiropractor, he did some work, but I noticed nothing. Over the next 4 years to where I am now, many neurological symptoms have crushed me and landed me in bed. I lost my fiance of 12 years, my business has rapidly went down, and I really can't be around people anymore.

Some key points:
My main symptoms are:

• Sever vertigo, dizziness, faint feeling, losing my legs, wobbling
  Ears clogged, constantly popping
  Extreme fatigue like I am absolutely never rested at all
  Aches all over my body
  hyperventilating which bag breathing does not help
  Extreme frozen hands and feet, many times where they sweat
  Heart rate that is all over the place, some days never over 70, some days never under 100
  constant cold temps (96s-97's)
  Neck stiffness that never ever subsides, cracks/crunches ALL day long
  Severe soreness with any activity
  Paranoia
  Crushing anxiety, even a phone conversation or talking with someone in person makes me nearly faint
  Heavy heartbeat
  Nausea
  Constipation
  Hemmrhoids
  Chronic herpe outbreaks
  Dry hair
  Brain fog like no other. Debiliating
  Short term memory loss
  Shallow breath
  Air hunger
  Visual issues, looking up is harder. Eyes open in general makes me anxious and tired

• Thyroid in forms of T3 and T3/T4
  Progest E
  Pregnenolone
  B1
  B3
  B-complex
  Aspirin daily
  Vit K
  Taurine
  Lysine
  Many differnet types of Magnesium
  Salt supplementation
  Vit A
  Vit D
  Tanning
  Benadryl
  Periactin
  Minocycline
  LDN
  Caffeine
  Probiotics

I've messed around with several food combos, diets.

My current diet is as follows:

Wake up, drink 4oz coffee with full cup of milk and 2 tbs sugar
shake (rinsed cottage cheese, sugar, coc oil, fruit juice,salt, sometimes ice cream in it)
carrot salad
another shake from above
parmesan reggiano cheese with shake

Other foods but not daily are oysters, liver, steak, potato chips, coke/pepsi

I get between 2k-3k calories per day, and even at that, it's very hard. My stomach is always bloated.

I may have forgot things, so I may continue to add to this.

All of these are classic symptoms of hypothyroidism. Especially the part with feeling cold all the time in hands and feet and the sweating of hands and feet, and high pulse, and anxiety. Chronic stress is the primary cause of intestinal bleeding and inflammation since it removes blood from the gut and this eventually leads to tissue inflammation and sometimes necrosis. The constipation is most likely due to this chronic inflammation and also the fact that you consume a lot of calcium (and no magnesium that I can see), which further excites intestinal cells. In a hypothyroid person, all that calcium can be very dangerous, as Peat himself said. Nitric oxide, serotonin, adrenaline and cortisol are likely high as evidenced by the anxiety (adrenaline, cortisol), constipation (NO, serotonin), depressive episodes (serotonin), herpes outbreaks (cortisol, serotonin), visual issues (serotonin, prolactin) etc. Free fatty acids are probably high as well given the fatigue.
IMO you DON'T have Chron's nor colitis in the typical sense they are used by medical authorities. Constipation is the dead giveaway, just like you mentioned. The diagnosis of IBS is the closest modern medicine has come to acknowledging sub-clinical hypothyroidism that is rampant in the general population. Constipation is often and first and most trustworthy sign of hypothyroidism, and can be used to gauge your response to thyroid even temperatures and pulse seem to be all over the place while you stabilize.
In this state I think taking some drugs for about a month is warranted until you stabilize. In order to keep things simple, I would recommend asking a doctor about bromocriptine and clonidine, since together they should be able to address the main drivers of the shock state that you seem to be chronically in. Bromocriptine should be able to address serotonin, prolactin, estrogen, NO, histamine and cortisol. Clonidine should be able to address adrenaline and cortisol. I don't know about doses specifically for you, but common starting points are 2.5mg bromocriptine daily and 100mcg clonidine daily (before bed). Together, bromocriptine and clonidine should be able to reduce the inflammation in the intestine and get you to a more normal digestion.
Aside from the two drugs mentioned so far, actually the primary "drug" I would focus on would be thyroid. How much thyroid are you taking? Keep in mind that both Peat and Broda Barnes have written about cases similar to yours where up to 12 grains of thyroid daily were needed before the person started to feel "normal" again. Taking thyroid will raise temperature UNLESS you have a chronic bacterial infection somewhere. The infection can be ruled out by a simple CBC blood test. If your white blood cells are not high then you probably don't have an infection. So, keep working with thyroid until you see an increase in temperatures. The high heart rate you currently have is probably due to adrenaline and should actually decline and stabilize AFTER you start responding to thyroid, which may take a few weeks.
Finally, I mentioned in another thread taking some ATP directly. I still think it may help you but more as an immediate stabilizer than long term solution. The chronic stiffness you experience is a sign of low ATP and so is the inflamed and swollen intestine giving you the constipation. Taking some ATP (while also doing the other things I mentioned and waiting for their effects to kick in) should at least give you a more normal digestion and less stiffness/fatigue.
Just my 2c.

What does one do if they have a chronic bacterial infection?

 

[messtafarian]

post 100041

post 99961 I'm thinking about going to *ask* for a spinal tap for the potential diagnosis of either ms or cidp - in fact I just got a referral to an ms specialist today. I don't have herpes but there is Epstein Barr in me. Is it really that likely to be unsafe? If a person's white blood count is normal, for example, is there still the risk you're discussing?

I've some bad stories.
You really don't want anything at all to go wrong in the spinal column.
I'd avoid it unless it was a critical emergency with no alternative.

MRI seems much less risky, and may give more useful info too.

I've had an mri of all three locations -- brain, cervical, lumbar. All normal except for some spinal disc issues which was what I really thought this was for many months. Now I don't think so...and I think the only way to tell if I have autoimmune demyelination is through a spinal tap. Wish there was another way.

 

[tara]

I am no authority on thyroid supps, but as you may have noticed, I usually encourage people to be pretty cautious with thyroid supplementation - try other things first, start low and increase gradually, ensure adequate calories etc. I don't share Joocy's confidence that it is always easy to just take less if you someone goes overboard.

However, what Haidut says seems to make sense, and gradually increasing your thyroid supplement seems like a reasonable thing to try. No guarantees, of course. It seems so far you have only tried a fairly low dose. If you are wanting to stay cautious, you could try sticking with the increase you've just made for 3-4 weeks before considering increasing again - it can take that long for the T4 to level out in blood. Monitoring temps can help assess what effect it is having. Spreading it out through the day can help give a more even T3 - at least two doses, but maybe 3 or 4 or more would be better.

The other idea involves monitoring UpH, and seeing if you can use foods etc to help keep it in the optimal range. I think this can help with absorption and utilisation of nutrients.
I don't think this is incompatible with trying other things too.

Also, there was a discussion recently on self-treatment and manipulative treatments for hiatial hernia that may be relevant for you.
viewtopic.php?f=56&t=7629

Personally, much as I hate the idea, I suspect that I still haven't got a way to handle much milk well - it still seems to be my most obvious source of brain fog and at least some of my fatigue.

 

[iLoveSugar]

Took 1/2 tablet earlier and 1/4 tonight. When should I start looking for symptom improvement. Tomorrow I will do 1/2 waking up, and 1/2 mid day. Ramp up from there.

 

[iLoveSugar]

Thanks Tara. So 1/2 tablet 2x a day seems pretty safe?

So if you don't handle milk well, where do you get your protein/calcium?

 

[tara]

post 100058 Thanks Tara. So 1/2 tablet 2x a day seems pretty safe?

So if you don't handle milk well, where do you get your protein/calcium?

It doesn't seem excessive given your state. I'd split it more, into 3-4 doses, so you get some at waking, some before sleep, and some in between. Then expect it to take 2-3 weeks to reach full effects of T4. But you may get some part of the effects almost immediately from the T3.

Variously, lamb, beef, liver, prawns, squid rings, fish, eggs, gelatin. Oyster shell powder.
I do still have some milk, but whenever I try to ramp it up so I can eat less meat, I seem to gradually go down hill (and get too foggy to notice what's going on easily).

 

[iLoveSugar]

I've been trying for a while with the 1/4 tablet, 1-3x daily with no effect, hence gonna try the 1/2 tablet.

My brainame fog is awful with/without milk. Does cottage cheese or regular cheese also give you the fog?

 

[tara]

post 100070 I've been trying for a while with the 1/4 tablet, 1-3x daily with no effect, hence gonna try the 1/2 tablet.

If you've had a go with 3x1/4 tablet for at least two weeks, then it seems reasonable to try more. I still recommend taking some before bed.
Did you monitor temps to see if they changed when you did this?

post 100070 I've been trying for a while with the 1/4 tablet, 1-3x daily with no effect, hence gonna try the 1/2 tablet.

My brainame fog is awful with/without milk. Does cottage cheese or regular cheese also give you the fog?

I expect we have different sensitivities.
For me, regular aged cheeses seem to be a more direct migraine trigger, so I avoid them (unfortunately, because I love cheeses). I think my homemade fresh cheese (made either with vinegar or rennet) was similar to fresh milk, but I may not have tested this consistently enough. I don't like to waste the effort etc of making it, and had to ditch a couple of batches when I'd overdone the milk.

 

[Wilfrid]

ILS,

You said that you were helped by B vitamins once.
Have you ever try to take , for a short period of time, choline and B5 ( in isolation ) ?
What, also, about very small doses ( no more than 20mg) of nicotinamide 3x/day after meal and a little dose of preg 1x/day ( something no more than 10mg with your breakfast )?
Water extract of wheat germ, as a source of magnesium source and various B vitamins, minerals?

 

[haidut]

post 100053

post 99930 So for as much as I complain and moan, I figured it would be best to log everything into one long post. For what it's worth, I am a 30 year old male, weight about 150, look pretty decent with an athletic build, but feel like complete S**T!!!

Growing up, I had allergies quite bad, had some stomach discomfort at times, didn't have the stamina my friends had, but other than that was pretty normal until about age 14. I remember the day to a "T", I was in class in 7th grade, had terrible stomach pains, had to use the restroom and the teacher wouldn't let me. My stomach got worse, and the pain intensified Around the same time, I woke up in the morning with a severe stiff neck, that made it so that I could not look left or right. It was severe pain. This last for about 3-5 days. From that day on, I absolutely dreaded school as my stomach was always in pain, gas pain, having to use the restroom, etc. I fought with my Mother daily until I was in 10th grade about dropping out of school. After the long 3 year fight, she finally gave in. Every single time I left my house, I mapped out where I was going as my bowels hurt so bad, and I had absolutely no time to go to the bathroom. Other than that though, neurologically and mentally, I could still live my life and enjoy time with friends. I had no anxiety or anything. By age 18, I finally opened up about my stomach issues with my family doc, who sent to me to a physciatrist, and from then on, I was trialed with Prozac, Effexor XR, Wellbutrin, Zoloft, as well as a few other SSRI's that I can not remember. None of them ever seemed to help me. Coming of the Effexor was a nightmare.

By age 19, 1 year later, I had my first colonoscopy. I was diagnosed with esophageal inflammation, along with IBS. Funny because I never had heartburn or anything. Throughout the next year or so, I was hospitalized many times due to severe stomach pain since I still ate bad food. I would be hunched over in pain so bad, many times it was hard to get to the ER.

2 years later, after still muddling through, I went to a different GI, had another scope, this time was diagnosed with Crohns colitis (never heard of this combo), along with proctitis. From then on, I decided it was time to take matters into my own hands and start eating well. I opted for the GAPS/SCD diet. For the most part, my severe stomach pain settled, but it turned into complete constipation. Of course I opted for bananas and almond flour since the GAPS diet was so restrictive. Throughout the next year or so, I still did have a few episodes of bad bad stomach pain, hospitalized me, 2 more colonoscopies. By age 25, I had 4 scopes, and roughly 30-40 ER trips. That kept saying proctitis and colitis.

This is where I really started to decline. When I was 26, I met Josh Rubin from East West Healing. I was following his advice. After about a year with him, he ventured into the world of Peat. I started following Peat recommendations. I remember coaching my sons baseball game, and kept feeling woozy and faint. It was scary since all eyes were on me. I went to a chiropractor, he did some work, but I noticed nothing. Over the next 4 years to where I am now, many neurological symptoms have crushed me and landed me in bed. I lost my fiance of 12 years, my business has rapidly went down, and I really can't be around people anymore.

Some key points:
My main symptoms are:

• Sever vertigo, dizziness, faint feeling, losing my legs, wobbling
  Ears clogged, constantly popping
  Extreme fatigue like I am absolutely never rested at all
  Aches all over my body
  hyperventilating which bag breathing does not help
  Extreme frozen hands and feet, many times where they sweat
  Heart rate that is all over the place, some days never over 70, some days never under 100
  constant cold temps (96s-97's)
  Neck stiffness that never ever subsides, cracks/crunches ALL day long
  Severe soreness with any activity
  Paranoia
  Crushing anxiety, even a phone conversation or talking with someone in person makes me nearly faint
  Heavy heartbeat
  Nausea
  Constipation
  Hemmrhoids
  Chronic herpe outbreaks
  Dry hair
  Brain fog like no other. Debiliating
  Short term memory loss
  Shallow breath
  Air hunger
  Visual issues, looking up is harder. Eyes open in general makes me anxious and tired

• Thyroid in forms of T3 and T3/T4
  Progest E
  Pregnenolone
  B1
  B3
  B-complex
  Aspirin daily
  Vit K
  Taurine
  Lysine
  Many differnet types of Magnesium
  Salt supplementation
  Vit A
  Vit D
  Tanning
  Benadryl
  Periactin
  Minocycline
  LDN
  Caffeine
  Probiotics

I've messed around with several food combos, diets.

My current diet is as follows:

Wake up, drink 4oz coffee with full cup of milk and 2 tbs sugar
shake (rinsed cottage cheese, sugar, coc oil, fruit juice,salt, sometimes ice cream in it)
carrot salad
another shake from above
parmesan reggiano cheese with shake

Other foods but not daily are oysters, liver, steak, potato chips, coke/pepsi

I get between 2k-3k calories per day, and even at that, it's very hard. My stomach is always bloated.

I may have forgot things, so I may continue to add to this.

All of these are classic symptoms of hypothyroidism. Especially the part with feeling cold all the time in hands and feet and the sweating of hands and feet, and high pulse, and anxiety. Chronic stress is the primary cause of intestinal bleeding and inflammation since it removes blood from the gut and this eventually leads to tissue inflammation and sometimes necrosis. The constipation is most likely due to this chronic inflammation and also the fact that you consume a lot of calcium (and no magnesium that I can see), which further excites intestinal cells. In a hypothyroid person, all that calcium can be very dangerous, as Peat himself said. Nitric oxide, serotonin, adrenaline and cortisol are likely high as evidenced by the anxiety (adrenaline, cortisol), constipation (NO, serotonin), depressive episodes (serotonin), herpes outbreaks (cortisol, serotonin), visual issues (serotonin, prolactin) etc. Free fatty acids are probably high as well given the fatigue.
IMO you DON'T have Chron's nor colitis in the typical sense they are used by medical authorities. Constipation is the dead giveaway, just like you mentioned. The diagnosis of IBS is the closest modern medicine has come to acknowledging sub-clinical hypothyroidism that is rampant in the general population. Constipation is often and first and most trustworthy sign of hypothyroidism, and can be used to gauge your response to thyroid even temperatures and pulse seem to be all over the place while you stabilize.
In this state I think taking some drugs for about a month is warranted until you stabilize. In order to keep things simple, I would recommend asking a doctor about bromocriptine and clonidine, since together they should be able to address the main drivers of the shock state that you seem to be chronically in. Bromocriptine should be able to address serotonin, prolactin, estrogen, NO, histamine and cortisol. Clonidine should be able to address adrenaline and cortisol. I don't know about doses specifically for you, but common starting points are 2.5mg bromocriptine daily and 100mcg clonidine daily (before bed). Together, bromocriptine and clonidine should be able to reduce the inflammation in the intestine and get you to a more normal digestion.
Aside from the two drugs mentioned so far, actually the primary "drug" I would focus on would be thyroid. How much thyroid are you taking? Keep in mind that both Peat and Broda Barnes have written about cases similar to yours where up to 12 grains of thyroid daily were needed before the person started to feel "normal" again. Taking thyroid will raise temperature UNLESS you have a chronic bacterial infection somewhere. The infection can be ruled out by a simple CBC blood test. If your white blood cells are not high then you probably don't have an infection. So, keep working with thyroid until you see an increase in temperatures. The high heart rate you currently have is probably due to adrenaline and should actually decline and stabilize AFTER you start responding to thyroid, which may take a few weeks.
Finally, I mentioned in another thread taking some ATP directly. I still think it may help you but more as an immediate stabilizer than long term solution. The chronic stiffness you experience is a sign of low ATP and so is the inflamed and swollen intestine giving you the constipation. Taking some ATP (while also doing the other things I mentioned and waiting for their effects to kick in) should at least give you a more normal digestion and less stiffness/fatigue.
Just my 2c.

What does one do if they have a chronic bacterial infection?

Well, I'd try to confirm it, find out what bacteria it is, and start an antibiotic that can treat it. It may need several months of treatment. Ray wrote that some men with endotoxin issues and lower back pain had to take an antibiotic for 6 months to see a complete cure. The ones who took it just for a few weeks relapsed pretty quickly. There are a few studies with humans and low dose doxycycline for periodontal disease. Most of these studies are 6-12 months long and the results do not start to be seen until after 3 months. So, it looks like in cases of chronic infection (which periodontal disease is most likely due to) antibiotics have to be taken for a while, especially a lower dose treatment.

 

[Parsifal]

Well, I'd try to confirm it, find out what bacteria it is, and start an antibiotic that can treat it. It may need several months of treatment. Ray wrote that some men with endotoxin issues and lower back pain had to take an antibiotic for 6 months to see a complete cure. The ones who took it just for a few weeks relapsed pretty quickly. There are a few studies with humans and low dose doxycycline for periodontal disease. Most of these studies are 6-12 months long and the results do not start to be seen until after 3 months. So, it looks like in cases of chronic infection (which periodontal disease is most likely due to) antibiotics have to be taken for a while, especially a lower dose treatment.

Not sure that it is a good recommandation. I destroyed my gut by taking antibiotics during 10 month due to Lyme disease and not sure that I will heal it someday :?.

 

[haidut]

post 100037 I love haidut.

Haidut you are a credit to the human race. :)

Well, thanks! My boss at work will probably disagree though ;-)

 

[haidut]

post 100110

Well, I'd try to confirm it, find out what bacteria it is, and start an antibiotic that can treat it. It may need several months of treatment. Ray wrote that some men with endotoxin issues and lower back pain had to take an antibiotic for 6 months to see a complete cure. The ones who took it just for a few weeks relapsed pretty quickly. There are a few studies with humans and low dose doxycycline for periodontal disease. Most of these studies are 6-12 months long and the results do not start to be seen until after 3 months. So, it looks like in cases of chronic infection (which periodontal disease is most likely due to) antibiotics have to be taken for a while, especially a lower dose treatment.

Not sure that it is a good recommandation. I destroyed my gut by taking antibiotics during 10 month due to Lyme disease and not sure that I will heal it someday :?.

If there is a chronic bacterial infection it may well be needed. I am not recommending he starts taking antibiotics randomly. I said I'd first confirm the infection and find out what bacteria it is. Believe me, if you have something like C. Difficile you don't want it lingering around. Your gut issues from antibiotics will look like a walk in the park compared with what that bacteria can do. Same goes for a chronic respiratory infection - it can ruin your lungs for good.

 

[iLoveSugar]

post 100074 ILS,

You said that you were helped by B vitamins once.
Have you ever try to take , for a short period of time, choline and B5 ( in isolation ) ?
What, also, about very small doses ( no more than 20mg) of nicotinamide 3x/day after meal and a little dose of preg 1x/day ( something no more than 10mg with your breakfast )?
Water extract of wheat germ, as a source of magnesium source and various B vitamins, minerals?

I have never tried Choline or B5 in isolation. I have taken pregnenolone quite often, and messed around with Niacinamide for a while to (I assume thats what you mean?).

 

[iLoveSugar]

I woke up today in a complete funk. I was literally disoriented, couldn't wake up, felt like I was hit by a truck. I feel worse than I do when I take a heaping dose of some sort of anti-histamine. My temp was 96.4 and pulse was 58. I kept trying to remember if I took anything last night, and I couldn't think of anything obvious. Then I remember I took activated charcoal before bed. Is it at all possible for this to create this type of reaction? I certainly wouldn't think so.

 

[haidut]

post 100120 I woke up today in a complete funk. I was literally disoriented, couldn't wake up, felt like I was hit by a truck. I feel worse than I do when I take a heaping dose of some sort of anti-histamine. My temp was 96.4 and pulse was 58. I kept trying to remember if I took anything last night, and I couldn't think of anything obvious. Then I remember I took activated charcoal before bed. Is it at all possible for this to create this type of reaction? I certainly wouldn't think so.

Charcoal can lower blood sugar and keep it low for extended periods of time. Probably not optimal to take it at night. It can also bind and destroy substances that you need, including thyroid hormone.
Charcoal is also contra-indicated in people with constipation - i.e. it will constipate you even more.
Why are you taking charcoal and how often?