Diagnostic difficult despite many analyzes and tests

[nini]

Hello, i have a lot of problems since my adolescence like fatigue, skin problems, dry mouth, cold hand, dry eyes etc

i have made a lot of analyzes and treatment but there is nothing on the analyzes who can explains my differents symptoms except low b12 and high bilirubin and the only treatment who have a little effect on my body is the carnivore diet. This permit me to regular my transit, i havent got gases like before whit this, my digestion is quite normal, but the other problems still here

i have made a lot of analyzes to make a diagnotic like thyroid blood test, parasit, anti nuclear antibody to know if it's a sjogren syndrom, neurotransmitter, coproscreen, helicobacter, candida albican, etc like you can see

I have tested oxymatrine and differents protocols of méthylation like i found in this page https://me-pedia.org/wiki/Methylation_cycle_hypothesis but no effect until now. Nowadays i try b12 oils and vitamin b2, but the only effect i supposed is i'am more tired but no effect in my skin, mouth, etc

So i have seen a lot of medics and the only diagnostic they give me it's "chronic fatigue" but i don't feel only tired, there are a lot of others symptoms like dry mouth which are very embarassing.



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[Pyrrhus]

This situation sounds very frustrating. I'm sorry to hear that. Many of us also have laboratory analyses that are not helpful, which is also frustrating for us.

Besides low B12, your lab analysis also shows slightly high CRP (C-reactive protein) and low lymphocytes. These may indicate an infection, but they don't tell you what type of infection, so it's not that helpful...

 

[Rufous McKinney]

So i have seen a lot of medics and the only diagnostic they give me it's "chronic fatigue" but i don't feel only tired, there are a lot of others symptoms like dry mouth which are very embarassing.

Your symptoms sound quite familiar. There are many many things going on and parts of the body affected by this illness, it is far more than fatigue.

I get chinese herbs from an expert herbalist and a big focus is on helping with symptoms like Dry Mouth (in my case-mouth, throat, lungs, eyes, sinus). I assume your dry mouth symptoms aren't related to pharmaceuticals. It is very difficult or impossible for me to tolerate their pills with this side effect. I literally choke.

This is described as various symptoms related to Yin deficiency in chinese medicine (and that means your also overheated/inflamed/yang). I have made no progress with regular doctors on this entire topic. They even lie and tell me the pill does not cause this effect, when its right there on the pamphlet.

I also take chinese herbs for my specific digestive problems. Currently (and due to being worried about COVID) I am taking lung moistening herbs with my digestive tea and it quickly improves things.

There is lots of helpful info here in PR and good luck finding a path forward! Feel Better Soon!

 

[nini]

i have also tried differents chinese herbs but again no effect with me . The only thing wich have an effect to my dry mouth is the pilocarpin but there are a lot of side effect and it take only during 1 hour.


Thank you !

 

[nini]

i also don't understand why my bilirubin is so high but on the other side i have no anemia. And it's couldn't be a gilbert syndrome because the two of bilirubin increased. When i search on internet i never found a diagnostic to explain all my illness, at the beginning i though it was a candidose or helicobacter but it wasn't, after i have made research on sjogren syndrom, and now i think it's probably b12 because it's the only thing in my blood test which is anormal. I have also a low rate in zinc but it's quiete insignificiant.

So i'm really lost, i don't know who to turn to or what test it's possible to make after this, i have seen an internal medicine in the american hospital at paris who he made me again a lot of test but all it's normal. I feel like have "normal" test blood but everyday i don't feel normal...

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[nini]

i have also made many serology tests like for borreliosis, hépatitis, mycoplasma, bartonellosis, cytomégalovirus, etc

 

[Hip]

i don't feel only tired, there are a lot of others symptoms like dry mouth which are very embarassing.

Have you looked into Sjogren's syndrome. Dry mouth and eyes are characteristic of that illness. Sjogren's can also be a comorbidity of ME/CFS.

 

[nini]

Have you looked into Sjogren's syndrome. Dry mouth and eyes are characteristic of that illness. Sjogren's can also be a comorbidity of ME/CFS.

yes i have made tests to sjogren but it's negative

 

[BeADocToGoTo1]

Hi @nini

Sorry to read of your struggles. A few thoughts in the hope it will help.

Thyroid

When you mention thyroid tests, have all of the following been tested? It is scary that there are still doctors out there that think TSH is a thyroid hormone and only use that test to determine if there is an issue.

When your thyroid was tested, did it include all of the following tests?

• free T4
• free T3
• reverse T3
• TPOAb antibodies (to exclude Hashimoto autoimmune)
• TgAb antibodies (to exclude Hashimoto autoimmune)
• TSH

Reverse T3 is often overlooked, and so is Hashimotos. But they are very important to check. If the endo only wants to check TSH....run out of the office and find another. Also ask if they prescribe Armour (NDT), and not just the synthetics. If not, that is not a good sign of a good doctor either.

In addition there are some related nutrient levels that would be good to check:

• selenium, iodide, iron, ferritin, iron binding capacity and saturation, and DHEA.

The best book I read on the subject was from Elle Russ, the Paleo Thyroid Solution.

Malabsorption

Doctors sadly often overlook this. Have you checked for any nutrient deficiencies or any malabsorption issues including pancreas function, exocrine pancreatic insufficiency (EPI), small intestinal bacterial overgrowth (SIBO), liver function, Candida yeast overgrowth, gallbladder function, stomach acid strength, Crohn's, food sensitivities, Celiac?

Have you taken a close, hard and honest look at absolutely everything you eat and drink?

Tests

Have you done the following tests?:

• Nutrient level and Organic Acid testing such as Genova FMV or Great Plains Lab Organic Acid Test (OAT) are great for an overview.
• Stool test pancreatic elastase to check for exocrine pancreatic issues
• Blood test fasting trypsin (to see if you produce enough enzyme for protein breakdown)
• Stomach acid: Is your pH low enough to start digesting food? If it is too high this will exacerbate any SIBO, candida overgrowths, and malabsorption. Are you taking antacids or PPI as these only cover symptoms, do nothing about root cause, and can make things much worse. Have you tried the following simple selftest:
  
  A simple unscientific test to approximate acid level is by drinking a quarter teaspoon of baking soda (sodium bicarbonate) mixed in a glass of water on an empty stomach in the morning. This creates bubbles within two to three minutes when mixed with the hydrochloric acid in your stomach. If after five minutes nothing happens, there is a very good chance the pH of your stomach acid is too high (i.e., low stomach acid).
• Blood sugar tests (all before breaking fast)

1. A1c. "Low" carb means something slightly different for everyone, but if your A1c is too high (5.3% or higher) you should try to lower carb intake as it can indicate excess sugar or carb intake. Your cells are likely being damaged (glycation) at this level. 5.7% is the official pre-diabetes number. It is a great simple indicator of excess carb intake

2. Triglycerides. If your triglycerides are high (<100 mg/dL is optimal) you should try to lower your carb intake as your liver is transforming excess into energy storage. Another indicator of excess carb intake.

3. Ketones. I also track my blood ketones to be in nutritional ketosis (0.5-3mmol), which is another great indicator of diet quality. I never go to extremes and never add exogenous ketone salts either.

4. Insulin. Higher than 5 uIU/mL is an indicator of too high carb/sugar intake and/or start of insulin resistance

5. Blood glucose. <100 mg/dL is the expected norm, but <85 is better for longevity and health.

Water Quality

What is the quality of your water? Are you drinking, e.g. mineral, well, tap, bottled (plastic or glass), chlorinated, fluoridated , reverse osmosis, reverse osmosis with minerals added back in, filtered (what kind?), restaurant or cafe water, etc.? Try a few different types of mineral waters (glass bottle of course as you don't want the extra hit of plastic particles and leached chemicals) to see whether that helps.

Water quality is often overlooked as possible causes of microbiome dysbiosis, reflux, allergies, skin issues, airway irritations and many chronic health issues. Tap water is shockingly bad in most of the US (and the UK) with poor treatment, and additional toxins added in the form of chlorine, fluoride and ammonia. Minerals are not the problem, it is often the added chlorine and ammonia that causes digestive, airway and skin irritations (you are breathing in chlorine during a shower!). They are toxins. Certainly drinking it is unhealthy and will impact your microbiome, but many overlook the contact with skin, eyes, lungs, throat during showering and bathing. A shower filter is cheap and takes a few minutes to install. Well worth it. A few of my neighbours noticed quick improvements for them and their children by adding filters for bathing. Drinking from plastic water bottles and you are 100% ingesting plastic particles and leached chemicals. Even US tap water has the highest level of plastics in it these days. This is a hit on your whole immune and digestive system every single sip you take. Also be careful with reverse osmosis water, but that is a different discussion.

Hope that provides some food for thought. Wishing you strength!

 

[nini]

no i have made also t3 and t4 but it's normal again

 

[nini]

elastase is also normal and triglycérides too. For the water i don't drink tap water because there are a lot of chlorine, i drink this water https://www.montcalm.fr/ and also these https://bionaturalys.fr/eau/3108-eau-rosee-de-la-reine-707200.html i have already filter to my shower and my tap, but there is no effect, i think it's not the problem, i have made all it's possible to have the better water. And i'am the only one in my family who have this problems.

I have made also food intolerance test, microbiote, etc i have used pro and prebiotic but no effect, before to eat only meat i was like my parents vegetarian and my digestion was horrible. But now with carnivor diet i haven't got residual on my feaces, also gases disappeared.

I have never take antacids, but before i eat only meat, my stools where really acids and contains a lot of HCl

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[BeADocToGoTo1]

Hi @nini

I will go through the results a bit later as I will need to do some translation.

There are many people who have had success with temporary carnivore diet to lower inflammation, rebalance SIBO and Candida overgrowth, calm the intestines, as it can cut out a lot of possible irritants that can come from processed food, FODMAP or other sensitivities, and effects from sugar and simple carbs. It can get you into ketosis and lower all blood glucose issues. It can function as a form of reset diet. You do have to be careful to not lose out on certain vitamins and minerals in your diet, especially if you do not eat organ meat and bone marrow. And of course the quality of meat is everything. Can you handle eggs, plain full fat Kefir/yoghurt or cheese? Seafood? Some elements to watch are vitamin C, E, magnesium, electrolytes, calcium, folate.

Have you looked into a low FODMAP diet? Perhaps you can slowly (one at a time) introduce elements from it when you feel ready. Brazil nuts would be a good example of low FODMAP for magnesium, vitamin E, calcium or blueberries for vitamin C.

Do you drink anything else beside water? Do you smoke? Alcohol?

It might still be worth doing the reverse T3 and two Hashimoto's tests as it looks that those were missing.

Was the elastase result from a stool test? Were the tests above done during your carnivore diet? If so, how long had you been donig carnivore diet before those tests?

Have you been tested for all the various hepatitis versions? Has your liver been tested thoroughly?

What about hormone level tests such as?:

• Estradiol
• Progesterone
• LH
• FSH
• DHEAS
• Testosterone
• Cortisol

Are there any other medicines or supplements that you are taking that may cause side effect symptoms you are having?

 

[BeADocToGoTo1]

If you are lactose intolerant then it does not mean that you can no longer eat anything with lactose, but you can add lactase pills with the first bite of something that contains lactose. I have to do this even if something like steak is prepared with a tiny bit of butter. If in the future you do try to reintroduce dairy, this might be something to keep in mind.

Regarding the acidic stool, did this show after you went carnivore? By 'quite normal' stool, is it soft or sticky on the toilet or yellowish at all? Sorry for the uncomfortable question, but I have noticed that many doctors do not ask this even though it is very important.

Any gallbladder function tests performed?

It might be worthwhile to look into a comprehensive nutrient level test that checks for a variety of vitamins, minerals, amino acids, fatty acids levels, etc.

 

[pattismith]

yes i have made tests to sjogren but it's negative

The differential diagnosis in Sicca syndrome is mainly Sjogren and Peripheral Neuropathy.
If your anti-SSA (or anti-SSB) Antibodies are negative, you should have a lip biopsy to check if your salivary glands are inflamed.
If not, then the SFN/small fiber neuropathy should be explore with autonomic testing and skin biopsy.

Do you have some sensory symptoms (burning or tingling or numbness), or some autonomic symptoms?

 

[nini]

Hi @nini

I will go through the results a bit later as I will need to do some translation.

There are many people who have had success with temporary carnivore diet to lower inflammation, rebalance SIBO and Candida overgrowth, calm the intestines, as it can cut out a lot of possible irritants that can come from processed food, FODMAP or other sensitivities, and effects from sugar and simple carbs. It can get you into ketosis and lower all blood glucose issues. It can function as a form of reset diet. You do have to be careful to not lose out on certain vitamins and minerals in your diet, especially if you do not eat organ meat and bone marrow. And of course the quality of meat is everything. Can you handle eggs, plain full fat Kefir/yoghurt or cheese? Seafood? Some elements to watch are vitamin C, E, magnesium, electrolytes, calcium, folate.

Have you looked into a low FODMAP diet? Perhaps you can slowly (one at a time) introduce elements from it when you feel ready. Brazil nuts would be a good example of low FODMAP for magnesium, vitamin E, calcium or blueberries for vitamin C.

Do you drink anything else beside water? Do you smoke? Alcohol?

It might still be worth doing the reverse T3 and two Hashimoto's tests as it looks that those were missing.

Was the elastase result from a stool test? Were the tests above done during your carnivore diet? If so, how long had you been donig carnivore diet before those tests?

Have you been tested for all the various hepatitis versions? Has your liver been tested thoroughly?

What about hormone level tests such as?:

• Estradiol
• Progesterone
• LH
• FSH
• DHEAS
• Testosterone
• Cortisol

Birth control can also create a lot of side effects, so along with the above tests that might be one to discuss with your doctor.

Are there any other medicines or supplements that you are taking that may cause side effect symptoms you are having?

I try to eat different part and organ of meat like liver and kidneys, i eat also eggs, i don't cooked meat a lot to preserve maximum of vitamin.

Before this diet i also tried to avoid fodmap but nothin happened, i think the absence of fiber allows a better digestion. Before my stolls where deconstruct and very stinky, but now with this diet it's really better, my digestion is normal, no gases all along the day, no pain on my intestins on the morning when i have no food, etc

I eat also fish but less than meat, i have ever eat brazil nut but all nut i can't, i have made an colon hydrotherapy and all along there was a lot of detritus of brazil nut.

No i have never smoke and i don't like alcohol.

Yes elastase is from a stool test when i eat vegetarian food. I only started the carnivore diet in this year, but my vitamin level are normal and i have saw that we need less vitamin c when we don't eat glucide and sugar, before i supplement with liposomal vit c, but now i don't take vit c, only on the multivitamin wich i take for methylation protocol.

i have made hepatitis A,B and C, and many cold infection and virus, but it's all negative. View attachment DSC_0211.JPGView attachment DSC_0199.JPG

Cortisol i was ok, for the other i wait results but i have made also neurotransmitters, all it's normal only adreanline quiet high.View attachment DSC_0186.JPG

No before this illness i have never took medicines or supplements

 

[nini]

If you are lactose intolerant then it does not mean that you can no longer eat anything with lactose, but you can add lactase pills with the first bite of something that contains lactose. I have to do this even if something like steak is prepared with a tiny bit of butter. If in the future you do try to reintroduce dairy, this might be something to keep in mind.

Regarding the acidic stool, did this show after you went carnivore? By 'quite normal' stool, is it soft or sticky on the toilet or yellowish at all? Sorry for the uncomfortable question, but I have noticed that many doctors do not ask this even though it is very important.

Any gallbladder function tests performed?

It might be worthwhile to look into a comprehensive nutrient level test that checks for a variety of vitamins, minerals, amino acids, fatty acids levels, etc.

for my stools, this is before the carnivore diet https://forums.phoenixrising.me/att....37783/?hash=5446aa982f89c42224262db2e93fbb91
https://forums.phoenixrising.me/att....37784/?hash=5446aa982f89c42224262db2e93fbb91
https://forums.phoenixrising.me/att....37785/?hash=5446aa982f89c42224262db2e93fbb91


and now without fiber https://forums.phoenixrising.me/att....37786/?hash=5446aa982f89c42224262db2e93fbb91

i think i'm not intolerant for lactase, it's just i don't like milk but i have no problem to digest it.

i have made also MOU test, it's for the metabolit urinary organic https://forums.phoenixrising.me/att....37788/?hash=5446aa982f89c42224262db2e93fbb91
https://forums.phoenixrising.me/att....37789/?hash=5446aa982f89c42224262db2e93fbb91

 

[nini]

The differential diagnosis in Sicca syndrome is mainly Sjogren and Peripheral Neuropathy.
If your anti-SSA (or anti-SSB) Antibodies are negative, you should have a lip biopsy to check if your salivary glands are inflamed.
If not, then the SFN/small fiber neuropathy should be explore with autonomic testing and skin biopsy.

Do you have some sensory symptoms (burning or tingling or numbness), or some autonomic symptoms?

No i've never get sensory symptoms, i have juste digestion symptoms but it's better now, chronic fatigue and it's hard to wake up at the morning, dryness mouth and eyes, cold hands, i also sometimes spit mucus like this https://forums.phoenixrising.me/thr...-to-my-case.79460/#lg=attachment36514&slide=0

and i have skin problem with flaking https://forums.phoenixrising.me/thr...-to-my-case.79460/#lg=attachment36513&slide=0

 

[nini]

my oestradiol and progesterone are little high, i will try to take nettle and maca to increase my testosterone rate

 

[nini]

moreover i have also difficulties to take weight, since middle school, my weight doesn't really change despite sports and food. I weigh only 52kg for 1m74

During school when my illness appeared i had also difficulties to think clearly and to be concentrate. I had to make more effort for less results

 

[nini]

And i have also orthostatic intolerance when i woke up sometimes, besides one time i have lost my conscious when i get out of my bed and y fall on the ground.
But now this happens to me less often than before, may be because i eat different, but i'am already tired when i woke up, like i didn't sleep. It's really strange because i can run 10km while it's so hard to me to just get out of my bed.