ILoveSugar History

[iLoveSugar]

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 (helped at first, but never again)
  B1
  B3
  B-complex (helped 1 time, never again)
  Aspirin daily
  Vit K
  Taurine
  Lysine
  Many different types of Magnesium
  Salt supplementation
  Vit A
  Vit D
  Tanning
  Benadryl
  Periactin
  Minocycline
  LDN
  Caffeine
  Probiotics
  Methylne blue (helped 1 time, but never again)
  Charcoal (helped one time, never again)

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, bamboo shoots

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.

 

[charlie]

I noticed you mentioned Methylene Blue at one point. Did you get around to checking it out?

 

[iLoveSugar]

Yup, my bad, I will insert that above... I did try it, the first time I took it, it settled me down, but never again after that. Flared anxiety. Could be placebo, not sure.

 

[Parsifal]

Sorry to read about your issues, seems very hard.

I am a newbie to Peat's world, I have a lot of G.I tract issues as well and spasmophily/tetany like you (a lot better now) but what kind of milk are you drinking? Whole milk?

Seems to me that you are still getting a lot of PUFA's with icecream, milk and cheese that you eat? I may be wrong here.

By the way I don't understand why Peat is advising Coke. We don't really know what's inside and this is full of phosphorus.

I also have a lot of bloating but it's better since my main carb source is honey (combined with some milk that I eat throughout the day).

Potatoes is terrible for me as are other starches.

 

[Parsifal]

I know that Wilfrid had Crohn's disease and that seems to be cured thanks to Peat. Maybe you can ask him some advices?

 

[iLoveSugar]

I have tried various kinds of milk, cutting milk, etc. Since I don't want to lose anymore weight, I am currently drinking whole. The ice cream is just sugar, milk, cream and vanilla.

The coke is rare and potatoes are even more rare.

My crohns colitis also isn't normal. 99% of them have diarahhea, where I am the complete opposite.

 

[messtafarian]

Hi ILS

Have you ever been tested for food allergies?
Have you gotten the trio of MRI's looking for lesions for MS?
Have you ever had a spinal tap for MS etc?
Have you been thoroughly tested for Lyme?
Have you gotten a test for nutrient values through a place like Spectracell?
You seem like you've done a lot of nutritional intervention -- have you in your travels ever experimented with a ketogenic diet?
What does aspirin do for you?

There are a couple of symptoms you describe that remind me very strongly of symptoms of MS and cidp -- specifically the neck pain, eye movement issues, short term memory loss, aches and pains and anxiety. People with crohn's are susceptible to neurological complaints and also additional autoimmune disorders.

I'm going to suggest two things right away -- first is to add pregnenolone since that can give your body the precursors to whatever neurosteroids you might be missing. Second is trying a ketogenic diet with lots more fat. I am thinking with crohns you might have malapsorption issues which would leave you vulnerable to the deficiency of all the fat soluble vitamins including vitamin e. There's also haidut's Estroban which is a topical so there's no need to depend on your intestines to get it in you.

Deficiencies that lead to neurological problems are:
Vitamin B12
Vitamin B1
Vitamin B6
Vitamin E
Magnesium
Copper

 

[haidut]

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.

 

[Parsifal]

I have tried various kinds of milk, cutting milk, etc. Since I don't want to lose anymore weight, I am currently drinking whole. The ice cream is just sugar, milk, cream and vanilla.

In case you don't know, cream has a lot of PUFAs in it.

Have you tried cascara?

 

[haidut]

post 99948 Hi ILS

Have you ever been tested for food allergies?
Have you gotten the trio of MRI's looking for lesions for MS?
Have you ever had a spinal tap for MS etc?
Have you been thoroughly tested for Lyme?
Have you gotten a test for nutrient values through a place like Spectracell?
You seem like you've done a lot of nutritional intervention -- have you in your travels ever experimented with a ketogenic diet?
What does aspirin do for you?

I would advise strongly against the spinal tap as in ILS condition it can cause infection of the myelin and cause leakage of the CSF requiring blood patch and thus also increasing chance of infection. The chronic herpes outbreaks mean he is ummunosuppressed and I would not introduce anything (needle) into the CSF of a person with low immune function unless it is a life-threatening situation (i.e. meningitis confirmation). Also, spinal tap should only be done after an MRI rules out increased intracranial hypertension as a spinal tap can kill a person through brain herniation. Most doctors gleefully "forget" to mention these "minor" considerations to a person being coaxed into getting a spinal tap.
Unless he has optical neuritis a diagnosis of MS is highly unlikely given his symptoms. A blood test can show if he has Lyme. But I guess it would not hurt to get an MRI if he has not done one already.

 

[messtafarian]

Haidut!

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?

Also -- calcium! In my discussions with Peat and specifically regarding thyroid he seemed to be very pro-calcium. I take calcium supplements for this reason but my thyroid is not stable -- I thought calcium was one of the mainstays. I must have read this very wrong, where does he say that calcium is dangerous for hypothyroid people?

 

[iLoveSugar]

post 99948 Hi ILS

Have you ever been tested for food allergies? No, I have not.
Have you gotten the trio of MRI's looking for lesions for MS? I have had MRI's and seen a neurologist quite a bit, she always ruled it out.
Have you ever had a spinal tap for MS etc? I have not.
Have you been thoroughly tested for Lyme? I did test positive for Lyme and treated with ABX.
Have you gotten a test for nutrient values through a place like Spectracell? I have not.
You seem like you've done a lot of nutritional intervention -- have you in your travels ever experimented with a ketogenic diet? I have not.
What does aspirin do for you? It does nothing really. It doesn't even touch headaches, doesn't give me energy, etc.

There are a couple of symptoms you describe that remind me very strongly of symptoms of MS and cidp -- specifically the neck pain, eye movement issues, short term memory loss, aches and pains and anxiety. People with crohn's are susceptible to neurological complaints and also additional autoimmune disorders.

I'm going to suggest two things right away -- first is to add pregnenolone since that can give your body the precursors to whatever neurosteroids you might be missing. Second is trying a ketogenic diet with lots more fat. I am thinking with crohns you might have malapsorption issues which would leave you vulnerable to the deficiency of all the fat soluble vitamins including vitamin e. There's also haidut's Estroban which is a topical so there's no need to depend on your intestines to get it in you.

Deficiencies that lead to neurological problems are:
Vitamin B12
Vitamin B1
Vitamin B6
Vitamin E
Magnesium
Copper

 

[iLoveSugar]

Haidut, I have been all over the place with thyroid. I have not really ventured high up yet, because eating is hard right now, and I don't want to take too much thyroid, with very little nutrients. I'm also quite skinny as is. I have messed around with varying doses of T3 and T3/T4.

My current position is 1/4 tablet of Cynoplus, 2x per day.

 

[iLoveSugar]

And with all the calcium being dangerous right now, what are some dietary guidelines you would recommend? I don't think it's that big of an issue because I was drinking very little milk for a while, eating TONS of cottage cheese which has very little calcium. Even now, I get about 2-3 cups of milk a day, and that's it.

 

[messtafarian]

Well if haidut says no spinal tap, then don't do it, lol. But looking into a Spectracell or other full vitamin panel might tell you what nutrients are low and it's fairly likely you do have deficiencies if you have Crohns. The reason I bring up a ketogenic diet is because it's a Jaminet thing -- most specifically neurological symptoms respond really well to ketogenics and I think the theory is that it starves latent bacterial infections.

I also think just generally since your stomach really isn't working it might be helpful to go to your doctor and while you're asking him for the prescriptions haidut suggested that you ask him for a "banana bag" IV bolus of vitamins, minerals, etc. These are cheap and on hand at any hospital ER for roaming alcoholics etc and shouldn't be too hard to set up.

 

[iLoveSugar]

Asking for any of the drugs or vitamin IV's is not an option right now. I'm broke, and without insurance, victim to this corrupt USA medical system. The thyroid I have is something I order offline.

 

[messtafarian]

ok. At my mexican drugstore Parlodel is 98 dollars and catapress is 55 dollars. I think on the economy a vitamin infusion is about 150 bucks. I guess you can think about it and see if these things fit into your budget.

In the meantime you gotta sign up for obamacare or look into whether medicare is taking up insurance in your state. If you are having such serious stomach problems you might *really* need it one day.

 

[Joocy_J]

post 99969 Haidut, I have been all over the place with thyroid. I have not really ventured high up yet, because eating is hard right now, and I don't want to take too much thyroid, with very little nutrients. I'm also quite skinny as is. I have messed around with varying doses of T3 and T3/T4.

My current position is 1/4 tablet of Cynoplus, 2x per day.

Bro, that is a tiny dose of thyroid, step it up and see if you get results - worse case you can always taper back down. I take three grains and my health problems are not nearly as bad as yours.

 

[iLoveSugar]

How much is 3 grains, and what is safe to take per dose? These little doses don't do anything, but apparently higher doses are against what RP advises? I also worry about too much thyroid with not enough food? My weight is also down.

 

[haidut]

post 99961 Haidut!

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?

Also -- calcium! In my discussions with Peat and specifically regarding thyroid he seemed to be very pro-calcium. I take calcium supplements for this reason but my thyroid is not stable -- I thought calcium was one of the mainstays. I must have read this very wrong, where does he say that calcium is dangerous for hypothyroid people?

Well, look at the officially mentioned risks:
http://www.emedicinehealth.com/spinal_tap/page2_em.htm

Also, spinal tap is really not indicated for diagnosing MS:
http://www.ncbi.nlm.nih.gov/pubmed/26343922

Peat said that in the presence of hypothyroidism and magnesium deficiency "everything is dangerous".
http://www.raypeatforum.com/forum/viewtopic.php?t=4565

"...6. nograde - How dangerous is calcium when you are hypothyroid and magnesium deficient? Should large amounts of calcium be avoided in such a state?
Ray Peat - In the presence of hypothyroidism and magnesium deficiency everything is dangerous, but calcium and sodium are probably among the least dangerous things."

I also read an interview with him saying that when a person is hypothyroid calcium should be balanced with magnesium and/or thyroid to make it less likely to cause excitotoxicity and cell death. Keep in mind that calcium can be actually quite dangerous when thyroid function is low. Potassium is the same way. Both calcium and potassium can kill you in large doses, while sodium and magnesium are much less likely to cause serious damage when ingested in large quantities. Magnesium will probably make you crap your brains out before causing any lasting damage and sodium will probably make you so thirsty that you will drink a lot of water and end up peeing most of it out.