Solving My Mystery Illness

[RWilly]

I had these tested and it came back low. What would this indicate?

I actually would have thought that perhaps it would be high. High levels often indicates parasites.

 

[RWilly]

Part of me wonders if you are low on copper. It takes copper to normalize iron. Copper is also antibacterial and anti fungal.

This may be worth a read as well:
https://www.ahajournals.org/doi/full/10.1161/atvbaha.108.172072

"High homocysteine concentrations lead to increased homocysteine thiolactone,2 an irreversible inhibitor of lysyl oxidase3 which depends on copper to initiate the cross-linking of collagen and elastin in arteries.4 Insufficient lysyl oxidase leads to vascular disease.4 Thus decreasing homocysteine may not lead to vascular repair without extra copper which also can lower plasma homocysteine.5

The Western diet is often low in copper6 according to pooled data from several articles on more than 900 adult diets chemically analyzed. Sixty-two percent and 36% of diets of 80 randomly selected adults in Baltimore7 were below the recommended dietary allowance and the estimated average requirement for adults, 0.9 and 0.7 mg daily, respectively.8Diets low in copper tend to be low in folate as well and vice versa.9

Copper deficiency is the only nutritional insult that elevates cholesterol, blood pressure, homocysteine, isoprostanes, and uric acid, has adverse effects on electrocardiograms and arteries, impairs glucose tolerance and paraoxonase activity, and promotes thrombosis and oxidative damage. More than 80 anatomic, chemical, and physiological similarities between animals deficient in copper and people with ischemic heart disease have been identified.10–12

Copper supplementation (with other micronutrients) of people with ischemic heart disease produced objective and subjective improvement of heart failure.13 It is likely that the copper contributed to this improvement.14 Copper supplementation (with zinc) improved survival in a long-term double-blind study of ocular disorders.15

Larger and longer trials of homocysteine-lowering therapy1 with folate, etc, may be useless if homocysteine, per se, is not the injurious molecule. It seems unreasonable to do the same experiments over and over with an expectation of different results.

Inclusion of copper in a supplement, however, may promote vascular healing by a different mechanism than assumed in past trials. As the thiolactone is destroyed by paraoxonase2 (activity of which is decreased by copper deficiency16), improved copper nutriture may stimulate an increase in lysyl oxidase activity and repair of damaged or decreased collagen and elastin."

 

[Max23]

Please rank the symptoms on a scale so we know what are the ones that have a greater impact on quality of life and remove from the list those that are not immediately relevant (ie grey hair) to improve signal/noise. There is a too much data in the images you posted.

Have you done a Red and White blood cell panel? If so, please post. Here are some other ideas for blood tests:

IMMUNE SYSTEM:
- C reactive Protein
- Erythrocyte Sedimentation Rate
- CD4+ and CD8+ T-lymphocyte count
- B cell count
- NK cell count
- 25-OH-Vitamin D AND 1,25-(bis OH)-Vitamin D
- Immunoglobulin A, G, M with subclasses
- Anti nuclear antibodies
- Anti mitochondrial antibodies

ENDOCRINE
- 24 hour urinary and morning blood Cortisol
- DHEA-S (NOT DHEA)
- Total Testosterone
- SHBG
- Prolactin
- free T3
- reverse T3
- Anti Diuretic Hormone

MUSCLE AND METABOLISM:
- Lactic acid
- Creatine kinase
- Serum B12
- Serum Folate
- Serum Zinc
- Serum Copper
- Serum Uric Acid
- Ceruloplasmin
- Serum Transferritin
- Erythrocyte transketolase Activity (measures thiamine status)
- Erythrocyte Magnesium Concentrations
- Hair mineral analysis (skip the useless interpretations that are in the web)

CNS:
-Anti nAchR (nicotinic Acetyl-choline Receptor) antibody

GI/MICROBIOME:
- tissue Transglutaminase antibody
- fecal Calprotectin
- fecal Lactoferrin

PATHOGENS:
-Epstein-Barr IgM, IgG
-CMV IgM, IgG
- B. burgdorferi Western Blot (ELISA is useless). Consider Lymphocyte Transformation Test

Thank you very much for your thorough post! I have the symptoms organised this way to get clues that lead towards a solution. I understand it is very difficult for someone first time seeing them to understand my condition. I´ll do a ranking based on the quality of life. Most of these symptoms don´t have an effect on it. I have done like 40% of those tests, I think all of them normal. Noteworthy off the top of my head are that CRP is practically zero every time and vitamin D is over the average and two or three times above the average of my northern country. I´ll try to find those tests and make a post about them. It will take several days. Those are great ideas to test for, thanks!

 

[Velve921]

Hey Max,

I notice you still have a significant amount of tryptophan and starch in your diet... have you experimented with decreasing muscle meats and starchy food?

Over the past 6 years, I have found that many people see a lot of progress when they:

decrease:

PUFA
Starch
Muscle Meats
Foods with thickening agents

Increase:

Digestive Foods - Raw Carrot/Mushrooms/Bamboo Shoots/Coffee
Saturated fat
Sugar
Calcium rich foods
Gelatin

For me, I found that when I do ZERO starch and muscle meat combined with a ca:p ratio of 1:1 or higher, a lot of great things happen.

Of course, there are many people that do great on meat and/or starch; however, every time I listen to Peat or Georgi talk about the big picture, the common themes that seem to come from their visions are reducing PUFA, starch, muscle meat, and foods with added thickening agents.

Anecdotally, in athletes I’ve coached or person I’ve consulted, whenever they eliminate starch then energy and function goes up. As endotoxin or as some people are discussing, parasites, could be problematic, then this could be an area for you to research more.

Also, are you keeping track of your temp and pulse?

Keep your head up big guy!

 

[Constatine]

What has your doctor said about this? How long have you had this and how fast has it progressed? We can't rule out that this isn't something like multiple sclerosis or what not. Definitely go see a doctor if you have not yet.

 

[marcar72]

...however, every time I listen to Peat or Georgi talk about the big picture, the common themes that seem to come from their visions are...

Fanboy alert, fanboy alert!!

 

[Max23]

I won´t be able to answer to your responses today, because I have a really bad butt pain. Sounds kind of funny, but I can´t really sit. My leg nerves are going crazy as well. In addition I have neck spasms. I don´t know if it is because of something I took yesterday or not. I have never before had butt pain, but I think it´ll pass. Thank you all for your responses, you have been tremendously helpful!

 

[marcar72]

Just a wild guess

I won´t be able to answer to your responses today...

My "shot in the dark" would be chronic potassium deficiency.

 

[danishispsychic]

More things to try - Ox bile ( 500 mg ) with food, clove tincture, cascara ( a LOT of it ) every other day. For me , parasite cleansing around New Moon and full moon. Also, try getting castor oil caps from Now Foods and freeze then a couple weeks and take a few at night for a few days in a row.

 

[Max23]

Ever had eosinophils tested?

Yes, I have had eosinophils measured several times, I even keep account of my white blood cell dynamics. Eosinophils are often low and white blood cells in general are at the low end. Here is the table:

As I have understood, eosinophils are foremost for fighting parasites. So high value would indicate an acute parasitic infection. I think Kinghardt had this theory that with a chronic parasitic infection the eosinophils will go low, because the organism thinks it can´t get them and gives up, allowing them to chronically live. So low eosinophils would indicate it. It could also mean other things. Like a bacterial infection. Then the organism reacts rather with neutrophils. Interestingly whenever my eosinophils are low, the neutrophils are above average.

 

[Max23]

High dose progesterone and CO2 baths will help to heal everything because they restore energy and allow all your cells to work properly, but what specifically are main issues you want to fix?

I am a bit afraid of progesterone. I have been applying 4 drops of CortiNon around a skin tag for quite some time and now am sure it doesn´t remove it. Two days ago I tried it orally the first time, I took 3 drops and it improved muscle contraction a lot. Today I´ll try 3 drops before exercise. Oh, and I am pretty sure it weakens erections. I have not heard of CO2 baths before. Sound like a good idea though.
My main aim is to find the cause of this illness. Immediate things I would like to fix would be the ability to walk, stop muscle weakening and whatever the problem is with bones.

 

[Inaut]

Gentian and ginger combo for bitters @Max23 . Gentian can be cooling so the ginger compliments it.

Just be consistent with it before meals and over time digestion should get better (in addition to some of the other suggestions here).

 

[Max23]

how would you go about reducing bilirubin?

I have been interested in this also. I guess the answer would be bitters, bile movers or anything that helps to unblock the outflow of bile, depending on the causative factor. I have been looking for a detailed anti SIBO protocol, which has everything required for it, like stomach acid support, bile support, antimicrobials, biofilm breakers and some food suggestions. I would follow a protocol if there was a detailed one.

 

[Max23]

It does seem bacterial to me. Have you tested for SIBO?
When the cause of an ailment is unknown its best to first cover the basics and do things that help in a very general way. Sun exposure, Earthing or grounding (research indicates it helps immune related diseases and dramatically reduces oxidative stress as the free electrons eliminate reactive oxygen species or ROS), improving the microbiome, etc. No system in the body exists in isolation.

I am pretty sure I have SIBO, but have not tested for it. I don´t really know if the doctors test for it in my country. I have a gastroenterologists appointment. I´ll ask for it.

Sun exposure during the winter is really lacking for me. I get a lot of it during the summer and I also spend usually three hours a day on the ground, listening to podcasts. My muscles feel a bit better during the summer, but in general my health is not much better during the summer.

 

[Max23]

Part of me wonders if you are low on copper. It takes copper to normalize iron. Copper is also antibacterial and anti fungal.

This may be worth a read as well:
https://www.ahajournals.org/doi/full/10.1161/atvbaha.108.172072

"High homocysteine concentrations lead to increased homocysteine thiolactone,2 an irreversible inhibitor of lysyl oxidase3 which depends on copper to initiate the cross-linking of collagen and elastin in arteries.4 Insufficient lysyl oxidase leads to vascular disease.4 Thus decreasing homocysteine may not lead to vascular repair without extra copper which also can lower plasma homocysteine.5

The Western diet is often low in copper6 according to pooled data from several articles on more than 900 adult diets chemically analyzed. Sixty-two percent and 36% of diets of 80 randomly selected adults in Baltimore7 were below the recommended dietary allowance and the estimated average requirement for adults, 0.9 and 0.7 mg daily, respectively.8Diets low in copper tend to be low in folate as well and vice versa.9

Copper deficiency is the only nutritional insult that elevates cholesterol, blood pressure, homocysteine, isoprostanes, and uric acid, has adverse effects on electrocardiograms and arteries, impairs glucose tolerance and paraoxonase activity, and promotes thrombosis and oxidative damage. More than 80 anatomic, chemical, and physiological similarities between animals deficient in copper and people with ischemic heart disease have been identified.10–12

Copper supplementation (with other micronutrients) of people with ischemic heart disease produced objective and subjective improvement of heart failure.13 It is likely that the copper contributed to this improvement.14 Copper supplementation (with zinc) improved survival in a long-term double-blind study of ocular disorders.15

Larger and longer trials of homocysteine-lowering therapy1 with folate, etc, may be useless if homocysteine, per se, is not the injurious molecule. It seems unreasonable to do the same experiments over and over with an expectation of different results.

Inclusion of copper in a supplement, however, may promote vascular healing by a different mechanism than assumed in past trials. As the thiolactone is destroyed by paraoxonase2 (activity of which is decreased by copper deficiency16), improved copper nutriture may stimulate an increase in lysyl oxidase activity and repair of damaged or decreased collagen and elastin."

Once I thought I might have Wilson´s disease. Told it to the genetisist and she measured the serum copper and ceruloplasmin and they were in range. I had also urinary heavy metals measured, seven heavy metals were elevated, copper was at the low end of the reference range. I recently have been trying Solgar´s chelated copper. I have not gotten consistent results, but once I am sure I got nausea when I took two pills. One time I got heavy legs in the evening which I consider a good sign, because it is kind of relaxing, a feeling from my youth. When I measured my dietary copper intake, it was 2,3mg per day, when the required amount is minimally 0,9mg. Then I ate a lot of seafood. All in all some signs point to a deficiency, but I am not sure either way. A copper deficiency is common with celiac disease. I have been trying to diagnose celiacs with a zero gluten diet, I have some positive effects, but the disease really hasn´t improved.

 

[Max23]

Hey Max,

I notice you still have a significant amount of tryptophan and starch in your diet... have you experimented with decreasing muscle meats and starchy food?

Over the past 6 years, I have found that many people see a lot of progress when they:

decrease:

PUFA
Starch
Muscle Meats
Foods with thickening agents

Increase:

Digestive Foods - Raw Carrot/Mushrooms/Bamboo Shoots/Coffee
Saturated fat
Sugar
Calcium rich foods
Gelatin

For me, I found that when I do ZERO starch and muscle meat combined with a ca:p ratio of 1:1 or higher, a lot of great things happen.

Of course, there are many people that do great on meat and/or starch; however, every time I listen to Peat or Georgi talk about the big picture, the common themes that seem to come from their visions are reducing PUFA, starch, muscle meat, and foods with added thickening agents.

Anecdotally, in athletes I’ve coached or person I’ve consulted, whenever they eliminate starch then energy and function goes up. As endotoxin or as some people are discussing, parasites, could be problematic, then this could be an area for you to research more.

Also, are you keeping track of your temp and pulse?

Keep your head up big guy!

I have not tried to decrease muscle meat or starch consumption. I have had problems with dairy, eggs and gluten and so have been focusing on having a normal diet without those. Decreasing muscle meat and starch would make getting satiated quite difficult and it would be costly. Potatoes and bananas are really easy to get, cheap and provide satiation. Changing the diet would require a lot of effort, but I could make it better.

I haven´t really thought about thickening agents. I´ll keep an eye out. Carrageenan, I have come to realize, can be very harmful.

I haven´t been tracking my temperature or pulse in over a year. Thought I´d do a five day measurement. Today the waking pulse was 45 and rectal temperature 36,2 degrees of Celcius, which I consider 0,8 degrees below normal.

Thanks for the support, it means a lot!

 

[Markus]

I think most "mystery illness" are related to the gut.

 

[Velve921]

I have not tried to decrease muscle meat or starch consumption. I have had problems with dairy, eggs and gluten and so have been focusing on having a normal diet without those. Decreasing muscle meat and starch would make getting satiated quite difficult and it would be costly. Potatoes and bananas are really easy to get, cheap and provide satiation. Changing the diet would require a lot of effort, but I could make it better.

I haven´t really thought about thickening agents. I´ll keep an eye out. Carrageenan, I have come to realize, can be very harmful.

I haven´t been tracking my temperature or pulse in over a year. Thought I´d do a five day measurement. Today the waking pulse was 45 and rectal temperature 36,2 degrees of Celcius, which I consider 0,8 degrees below normal.

Thanks for the support, it means a lot!

Hey buddy,

I understand where you’re coming from.

Your waking pulse is quite low.

Have you experimented with powdered gelatin to help with satisfaction?

I do 12 tbsp a day of gelatin that I mix in with coffee + ice cream + Kalona Milk + coconut oil + cane sugar + salt.

I found that I am so sensitive to starch, muscle meat, pufa, thickening agents that it took getting rid as much as possible to see a difference.

Interesting about dairy, Dr. Peat wrote that many people who struggle with dairy usually choose the wrong source of dairy; once I started doing Kalona milk, parmigiana reggiano cheese, and vanilla ice cream with no thickening agents my world changed.

Increasing saturated fat with better quality protein has made a tremendous difference in satisfaction with myself.

Also, when you talk about satisfaction to food, some people are used to feeling satisfied on foods that lower their blood sugar; I use to only eat 1500 calories a day; now I consume 3000 a day. When I first started following Peat and tried new foods, I was never satisfied. I was eating 4000 calories a day because my metabolism was ready to roll with all these new foods. Don’t be surprised if you see some similarities when you eliminate foods that feed endotoxin and lower blood sugar.

 

[Max23]

What has your doctor said about this? How long have you had this and how fast has it progressed? We can't rule out that this isn't something like multiple sclerosis or what not. Definitely go see a doctor if you have not yet.

I have seen multiple doctors. I have seen two rheumatologists, two endocrinologists, genetisist, neurologist and various other doctors. They have not been of help practically at all. I have gotten a lot of bloodwork and some tests though. At the neurologist I got an EMG and an ENoG during which I developed cramps and total paresthesia all over the body and ended up in the ER, but the test didn´t detect any neurological disease.

I consider the startpoint of the disease 2014, although some bone problems track back to childhood, anal itch to 2010 and tinnitus also back then. First I had back spasms and muscle and bone problems keep getting worse and other problems are constantly adding. So it is a progressive disease with a quite constant speed of progression.

It could be early stage of multiple sclerosis, but so far no neurological symptoms, well exept paresthesia, which I consider metabolic of origin.

 

[Max23]

Just a wild guess


My "shot in the dark" would be chronic potassium deficiency.

I think potassium plays a role in my condition for sure. I have thought about deficiency and excess, which would indicate a kidney disease. Or maybe all of the electrolytes are dysbalanced? I have tried potassium supplements, which have had a beneficial effect on muscles, but even 150mg can cause heart arrhythmia. Some NSAIDs cause problems for me because it doesn´t allow the kidneys to excrete potassium well. I have constant paresthesia, which can be increased with potassium. Once I ate six bananas and the paresthesia went worse. Activated charcoal then again can increase paresthesia, because I think it leaches electrolytes. I eat a lot of potassium and blood tests usually are within range, so I don´t really know what to think about it.