Digestive issues for 2 years. 140lb down to 90lb

[Ryan83]

Hello my name is Ryan I'm 31 years old I don't drink, smoke, use drugs or engage in alternative lifestyles. I'm just a simple guy from a small Texas town and I live a very quiet life. I've been fighting a mystery condition for two years. I've been to many doctors I've had many tests ran and lots of things have been uncovered, but I still do not have a clear diagnosis and I don't know where to go or who to turn to.

Instead of writing a novel I'm going to keep my initial post short and I'm going to withhold information at first so I don't influence your responses. I'm going to list the symptoms I'm experiencing right now and I'd like for you to give me your first impression. I'll explain things and answer questions as we go.

Note: This came from absolutely no where. August 1st, 2013 I was just fine, but by August 31st, 2013 I was fighting for my life and still am. There has been no improvement.

Current Symptoms - 9/8/2015

▪Flu like symptoms
▪Swollen sore tonsils
▪Tonsil stones
▪Red sores in mouth
▪Blood blisters in mouth
▪Swollen lymph nodes
▪Twitchy muscles
▪Weaknesses
▪Painful tendons
▪Difficulty breathing
▪Heart palpitations
▪Dark green stools (no green food is being ingested)
▪Constipation (Drinking lots of water and juice)
▪Cloudy urine with particles
▪Rashes
▪Hair loss on legs
▪Cold legs and ice feet
▪Purple toes
▪Sores on legs
▪Low blood sugar
▪Numbness
▪Dizziness
▪Sore bones
▪Sore joints
▪Food Allergies (that came from no where)
▪Abdominal pain/pressure/discomfort (right side just under the ribs near the sternum and it seems to worsen after some meals, but moving around makes it worse too).

I went from being an active young man taking care of a farm to being bound to a bed for two years. There's more to the story, but this is a good start.

[jsycz]

http://www.healthgrades.com/allergy-immunology-directory/tx-texas/dallas#prem=&f.distance=10&sortby=&f.rollupspecId=PS052&f.pspecid=PS052&f.cond=PS052/E/Eosinophilic+Esophagitis%7C51890&pagenumber=1

[Ryan83]

Thank you so much for getting back with me. Some of the things that you guys have already mentioned are things that I have been considering.

Let me tell you a little more about myself. I'm White/Caucasian born in the United States and I haven't been far from my home town. So I haven't traveled anywhere or anything like that. I stay at home 99% of the time so this can help to narrow down possible causes. Whatever this is it happened at my home. I'm leaning towards exposure to something and I'll have more on this in my next post.

Lifestyle

▪ Smoke - No and never have
▪ Drink - No, but I have in the past
▪ Recreational Drugs - No and never have
▪ Sexuality Active - No, not since 2007
▪ Number of Partners - 2
▪ Sexuality - Straight
▪ Used Protection - No
▪ Tested for STDs - Just HIV
▪ HIV Status - NEGATIVE (2013 - 2014)

If you have any more questions feel free to ask. There's more to the story, but it's already 1:30AM so I will make another post in the morning to provide more details about how this started and some of the things I may have been exposed to. I'll also give you some of my thoughts on what I think some of the possible causes could be and see if anything jumps out.

I will be looking for an Immunologist thanks! I've recently seen a Endocrinologist and I have tests pending.

NOTE: Taking vitamins or supplements makes my condition worse.

▪multivitamins
▪specific vitamins such as vitamin D or vitamin B12.
▪Supplements such as Ensure, Boost, and EleCare.

Additionally I am also having allergic reactions to water. It's more than likely a reaction to what they put in the water.

Thanks,
Ryan

[TheLightSeeker]

Hey Ryan.

I had prepared a rather lengthy response, which I unfortunately..lost @%##*
Nonetheless, I'm posting this present one, taking into consideration the information from the link you posted and your recent post.

Some key observations:
--Vitamin D activates numerous enzymes and genes that work on the digestive & G/I systems, where there are the most vitamin D receptors, where the assimilation & absorption of B12 takes place AND about 80% of your entire immune system is there too !!!
You  need to have your B12 methylocobalamin (neurological form of B12)
checked. If low indeed, you can try sublingual methylocobalamin drops or shots.
Taking K2 along with your high doses of sublingual drops of D3 ensures that the metabolized calcium gets transported to bones, joints and teeth and NOT in the soft tissues!
--Pantoprazole lowers gastric acid.
Having an already compromised Digestive and G/I system,in a low gastric acid environment, food gets only partially digested, toxicity and allergies
prevail, pathogens thrive -you should be tested for H Pylori-
Discuss this with your gastro and look into a less invasive treatment for E.E. Avoid all allergenic foods as per IgG testing.
Also low stomach leads to esophageal sphingter relaxation, allowing (instead of preventing) gastric acid to back up into the esophagus!
---  Cortisol levels -I'm assuming it's AM cortisol- are too high.
Cortisol is a circadian hormone, so a 4x per 24H cortisol testing is preferable and so is a saliva test vs blood or urine to my opinion.
Ongoing biological stress puts you at increased risk for adrenal issues.
FYI only, look into BioHealthLabs' Functional Adreanl Stress Profile.

-Thyroid function. A vit. D deficiency & other suspected nutritional deficiencies due to malabsorption  contribute to hypothyroidism.
You T4 (storage thyroid hormone) should ideally be in the middle of the range or slightly lower
You should get checked for Free T3, Free T4 & Reverse T3
and forgo the standard TSH, T3 & T4 tests as they do not indicate thyroid function, only serum circulating levels. You should insist!!!
You may have to pay out of pocket $$ as they may not have an insurance code (I know the rT3 is rarely covered anywhere)
fT3/rT3 ratio is probably the most reliable marker for low cellular thyroid function.
Look for a ratio of over 20 for healthy thyroid function. (divide Free T3 by reverse T3, but make sure you are in the same unit measurement for both.)
-- Difficulty breathing.  Are you  predominantly a mouth breather?
One of the most important reasons to breathe through your nose ( in regards to narrowing of left nasal passage)  is because of a gas called nitric oxide that's made by your nose and sinus mucous membranes. This gas is produced in small amounts, but when inhaled into the lungs, significantly enhances your lung's capacity to absorb oxygen.
Nitric oxide is lethal to bacteria and viruses and is also known to increase oxygen absorption in your lungs from 10-25 percent. This is why it's important to try to inhale through your nose.

-- Supplements. I'd stay away from oral multivitamins and stick with only transdermal magnesium oil , sublingual drops methylocobalamin, methylfolate and D3 with K or IV cocktail of these and any other you're found deficient in.
Look also into glutathione supplentation

--Water.  Drink only spring water 1 hour away from meals, even it is only
ensure. You may also try warm water with some lemon.

There's a lot to consider.
My feeling is that when health issues do not resolve timely, conventional approaches have a dismal record.
Find a way to to get a holistic practitioner like a reputable Functional Medicine Doctor who can put all this all together for you.
When dealing with Conventional specialists, there are usually 2 issues.
One is specialty bias with strict protocols and the 2nd one is the lack of effective communication with other specialists.

I hope this helps, however, my comments and suggestions do not constitute medical advice.

Best wishes.
Niko

[Ryan83]

Thank you so much for getting back with me Niko. I hate losing posts! Thank you for taking the time to rewrite it! Before I get to my next post to provide more information I'll respond to yours first. I'll just go down the list and cover each item.

One of the first tests I had with my PCP was a test looking for H. Pylori and the two tests ran came back negative. This was in October of 2013.

Also with my urine being so cloudy I've had some tests ran. Multiple facilities from 2013 through 2014 say there's no sign of a urinary tract infection. Even though my urine sometimes almost looks like milk. (white lemonade consistency with particles) This seems to worsen if I drink Ensure or Boost. When I first wake up in the mornings my urine is a amber color. I do have photos.

Regarding the food sensitivities. I've been doing everything in my best efforts to avoid everything that I've tested positive for on the IgG tests and many of the foods I have not ingested for 6 months to a year. I'm reading the ingredients on everything. Some of them are quite difficult to avoid. Wheat is a great example because wheat and wheat byproducts are in everything from food to shampoo.

Breathing - I'm a nose breather. Because of the food sensitivities I believe in experiencing inflammation in my lungs, but there's something else because I have trouble breathing even when I know I haven't been exposed to foods identified as a problem. I have never had difficulty breathing in my life. It started at the end of August 2013  and it really took off in October of 2013. It was like asthma or something. It was like I wasn't getting oxygen, but when monitored the readings showed 98% - 100% on the O2 sat.

To help with air born allergies I have quarantined myself in one room. I keep it very clean and I have my own air conditioner with a custom 3 stage HEPA filter. I also have a separate air purifier with a 5 stage HEPA filter. Note: This does not seem too make any difference.

Note: Perfumes or anything with a fragrance sparks an immediate reaction inside my lungs and causes me to cough and become short of breath. This started in 2013.

Water - I'm trying to limit my exposure to water. Back in 2013 when this first began exposure to water would cause me to break out so bad it looked like a chemical burn. So I have not had a full bath or shower for about 9 months now. I have seen a reduction in severity with my skin, but I do still have rashes that form. When I drink water it makes my throat turn blood red. The longer I drink the worse it gets and the tighter my throat feels. I've almost completely lost my voice for 2 years. I sound like someone with severe strep throat. I feel like this is one of the reasons why I'm having trouble breathing. I'm drinking lots of juice right now.

Note: Large body rashes first started appearing when I was 9 years old. Some rashes last for months or more than a year and can cover areas the size of a dinner plate. These rashes do not respond to topical treatments such as cortisone, calamine lotion, or antifungal creams. The rashes do not respond to internal medications like benadryl or corticosteroids. Loss of large patches of body hair first began in 2002. I started having trouble with my legs when I was a small child about 6 or 7. Specifically my right leg. My legs are both sluggish and have been so for many years and have gradually worsened, but the same thing started happening to my arms a few years ago. Specifically my left arm. Sometimes it gets to where I'm not able to walk or use my hands. So some aspects of this have existed for quite some time and have progressively been worsening.

Note: My mother is a retired nurse of nearly 40 years. I'm staying with her right now and I've been here for a year so she sees what's going on and she believes I have at least two conditions coexisting and one is esasterbating the other. That's why she believes there are so many symptoms and why doctors are unable to make any sense of it. She feels like I have something that has been there all my life and this other thing that showed up in 2013. Her initial thoughts are that it sounds a bit like Leaky Gut Syndrome or possibly Candida overgrowth in my intestines, but she also feels like I was exposed to something for this sudden explosion of symptoms that I've never had before to appear out of no where.

The Endocrinologist that I saw a few months ago gave me an order form to have some tests done at my local hospital. The tests she checked are... "ACTH Stimulation (Cosyntropin Stimulation Test)",  "Testosterone (Free & Total)", and "TSH." In her notes she wrote down "abnormal weight loss" and "hypoglycemia." These tests have not been ran yet.

Hypoglycemia - I am having trouble keeping my blood sugar stable. I can tell when my blood sugar gets low. I do have a glucose meter that belonged to my father who was diagnosed with type 2 diabetes. I've been monitoring my levels for a few years now and there are some reoccurring patterns. I do my best when my blood sugar is 115 - 120 mg/dl. When it gets down to 90 mg/dl I can tell because I feel different and I get a bit shaky. When my blood sugar gets in the 80s I begin to have trouble walking and I slur my speech. When my blood sugar gets in the 70s I have trouble thinking or making good decisions. When my levels get in the 60s it's clear that it's a medical emergency at that point.

Also, before the food allergies when I was able to eat like normal certain meals would cause me to crash. My favorite food was a fully loaded cheese burger, but after I would eat it I would  become very tired. Like debilitating tiredness. Very sluggish... I would often stumble around as if drunk. The thing is the same thing would happen to my father. He told me everyone on his side of the family does that. I told my dad this isn't normal. Eating shouldn't make you tired, sluggish and stumble around.

Doctors have not taken this seriously because I'm doing home testing and they feel the information I'm providing is unreliable. This blood sugar issue predates the 2013 explosion of symptoms along with the body rashes and body hair loss. In fact, some of what's going on in my legs sounds a lot like diabetic nerve pain. Some parts of my right leg are so numb it burns. I've mentioned this to many doctors and they ignore it completely.

Bones, joints, and teeth - My teeth are falling to pieces and my bones hurt.

Pantoparzole - That may explaine why I was passing completely undigested food. I was passing completely undigested eggs and bananas, which are also on the list IgG list.

Cortisol - The tests have mostly been ran before noon, but the interesting thing is the fact that I feel my best early in the morning. I gradually deteriorate as the day progresses. If I wake up not feeling well that's a strong indication that I'm not going to be doing well at all at night time, which is when this is at its worst. I've had to have an ambulance pick me up at 2AM and take me to the hospital.

Tests revealed that I have a vitamin D deficiency and I decided to take vitamin D supplements. I also took vitamin B12, but each time I try to take them I end up in the emergency room with many nonspecific symptoms such as trouble breathing, numbness, shakiness, heart palpitations and indescribable sensations all throughout my body. So I have not taken any supplements for months.

The closest holistic practitioner I've been able to find is nearly two hours away and unfortunately he isn't taking any new patients.

I've got more information that I'm going to put in another post. I can even provide photos of rashes, hair loss, blisters in my mouth if I need to. In my next post you'll understand why I believe I've been exposed to something, but there's clearly some other long term condition going on as well. My goal is to get at least one of them identified.

Thanks,
Ryan

[Ryan83]

In this post I'll cover some of the things I was exposed to in 2013 and give you my own interpretation based on actual events.

Going off of the data available it's obvious that my immune system is a huge part of this. So let's take a look at that. My immune system is attacking my digestive system and my immune system is attacking some of the food I eat. So for some reason my immune system is on high alert. I remember from biology class that sometimes when a foreign invader enters the body the immune system is sometimes unable to identify it and the immune system will actually attack healthy cells. Some doctors I've seen say the sudden appearance of these symptoms indicate that I may have been exposed to something and that's the direction I've been leaning in based on events leading up to the sudden explosion of symptoms, but there are other factors to take into consideration.

Let's look at the timeline. August 1st, 2013 I was just fine, but by August 31st, 2013 I was seeing the rapid development of what would become an explosion of symptoms. So what was going on in my life in August of 2013?

First off, August 5th, 2013 my father was diagnosed with terminal cancer and not long to live. This news was sudden, but he already had a cancer diagnosis in 2008 and it wasn't a huge surprise that it was back, but it was stressful. He and I lived on the farm together for the past 22 years and while he was in the hospital in August I had to take care of the farm by myself, which means I was exposed to bacteria and chemicals I'm not normally exposed to because I was tending to things I didn't normally tend to.

Note: I did physical work I normally didn't do and it was 106°F outside. I'm usually inside in 73°F air conditioning and I hadn't been exposed to heat like that in years. I did about three months of farm work in three weeks. There was a moment when I got so hot, dizzy, and exhausted I didn't think I would make it back to the house. I haven't felt right since.

So now I'm going to list all the realistic possibilities based on what was going on, what I was exposed to, what the test results show, and how I was feeling then and now. Then I want to see if you or any one sees anything that may fit.

▪Stressful event (Dad's terminal cancer diagnosis) - Adrenal Fatigue
▪Mowing the farm breathing massive dust clouds - Valley Fever
▪Eating salad during the Cycolaspora outbreak .
▪Eating Blue Bell ice cream during the Listeria outbreak.
▪Eating hamburger meat that didn't smell or taste right - Salmonella or E. coli.
▪I tended to chickens and may have breathed feces dust - Histoplasmosis.
▪I was exposed to mosquitoes - West Nile. (they have tested positive here)
▪I was exposed to ticks - Lyme Disease.
▪I was exposed to very sick small children during the Endovirus D68 outbreak.
▪I was working with heavy machinery lifting and straining - Hernia.
▪I've worked with very sick animals loaded with worms - Parasites
▪After my dad died 4/23/14 I had the house tested - Positive for mold.
▪Family history of gallbladder failure on my dad's side. The pain/pressure in upper right abdomen just under the ribs near the sternum points to this as a possibility.

So what we're looking for is something that can impact the digestive system, overload the immune system, and cause the symptoms in my previous posts. This may be something simple that doesn't become this severe when treated early.

The Story - How the symptoms began.

Now that you know all of that let me explain how my symptoms began. I mowed the farm the last week of August 2013. It took me three days so I was exposed to a lot of thick smoke like dust and the morning after the third day of mowing is when I noticed I was short of breath. I felt like I wasn't getting enough oxygen and any activity made it worse.

During the first week of September 2013 I began struggling to get solid food in me so I switched to a liquid diet expecting things to return to normal in a day or two, but it didn't. I gradually became less able to get liquefied food and water in me. It was like my stomach wasn't emptying. I became dehydrated and went from 140lbs down to 90lb through September 2013 to October 2013.

I immediately went to a Gastrologist. That's where the EGD biopsies revealed "Eosinophilic Esophagitis." I was told EoE is a rare autoimmune disease that develops as a direct result of continued exposure to something I'm allergic to and that's when I went to the Allergist and blood tests revealed sensitivities to many foods.

Why? All of a sudden (poof) I'm allergic to three major food groups and I develop an autoimmune disease... Out of nowhere. One week I'm fine and the next week I'm fighting for my life...

As of right now it feels like I have a never ending cold with severe strep throat. Obviously after two years nonstop this isn't a cold.

There is more to the story, but I just posted a lot of information in my reply to Niko and in this post so I'll hold off on posting anything else. If you have any questions or if you would like me to explain something better please ask or let me know. If you'd like to see photos let me know.

Thanks,
Ryan

[TheLightSeeker]

Well, well Ryan.
Hmm, this is a lot for anyone to endure, without some significant damage in the end.
It is impossible to assess, which factors/events/situations impacted you more than others and to what degree.

Things to look into or to rule out:

1. Pathogenic infections such as  All Borrelia species- not just Borrelia Burgdoferi,Anaplasma phago­cytophilum, Babesia microti, Babesia duncani,Bartonella henselae, Bartonella quintana, Coxiella burnetii, Ehrlichia chaffeensis,Francisella tularensis, Mycoplasma fermentans, Icognitus and other Mycoplasma species, Rickettsia rickettsii, viruses such as HHV-6,nematodes. These are extremely difficult to detect!!!
Do a search her in medhelp for Dr. Garth Nicolson who is an expert in this field and was a contributor here a while back.

To rule out  these conditions.you need to find an LLMD and have
a complete Borellia, Mycoplamsa and Co-infections panel using   only IGeneX Labs.

2. HLA panel to verify the body's ability to fight biotoxins

3. Heavy metal toxicity.

4.  Stool analysis  for pathogenic bacteria, parasites, yeast, and levels of beneficial  bacteria, as well as  leaky gut syndrome. (also PEG test for the latter and saliva self-test for candida)

5. CMV, EBV, HHV-6, HSV1 and HSV2 test with MDL labs

6. Hypothyroid type 1 & 2- just like diabetes, there's type 1 and type 2.
The vast majority of ENDOs do not look into type. Very common!
Ask for Free T3, Free T4 and Reverse T3

7. Deficiencies. Tissue magnesium-not blood magnesium!
Glutathione, Potassium, Neurotransmitters, B12 Methylocobalamin, Methylfolate, Vit. D3 . IV cocktail or sublingual drop where possible

8. Comprehensive metabolic profile for organ integrity evaluation as well as fluids and electrolytes.

9.SPECT (single photon emission computed tomography) brain scan
which shows blood flow and more. Offers much more dynamic imaging than MRIs, which are more static.

10. PTSD  Any past traumas, recent or old, including childhood and not in memory.  eg. You dad's cancer and consequent passing.
Hypnotherapy is suggested to uncover any repressed memories brought to the surface and to have them processed & dealt with.

11. Complete hormonal panel. Adrenal fatigue must be ruled out.
Not recognized by conventional Endos.
FYI look into BioHealthLabs Functional Adrenal Stress Profile as I mentioned before. (look for low cholesterol levels, much more dangerous than high cholesterol, specially when below 150)
Some of the hallmarks of Adrenal fatigue are hypoglycemic symptoms
(low blood sugar)impaired immune function and weakness.
Watch out for secondary hypothyroidism, which should not be treated prior to treating AF!

12. MTHFR gene mutation and /or slow methylation due to ongoing stress
and other factors.

13. Allergy to fluoride and other chemicals in regards to consumption of water.
Also Rule out hyponatremia.
Hydration is a very vital  part of metabolic processes and overall wellness.

14. Mold related breathing issues, mold lung infections, G/I and immunosuppression etc.
You should read Dr. Mercola's article on Mold exposure.
I had come across another person in different forum years ago which I moderated, whose symptoms were very similar to yours, caused by mold exposure and PTSD.


There are probably more tests that could be done and more things to rule out, however, this is what I came up, at present.

Consider hooking up with a very reputable Holistic Practitioner by skype
or similar, because, honestly, I can't see conventional medicine getting you out of this. Some of conventional treatments may cause you further damage with doubtful or unsustainable benefits.
Be extra careful, since you mom comes from a professional nursing background. She may be very open-minded, but you both need to be super vigilant in order to avoid falling into the cracks of modern medicine.

I don\t intend to brag, but I have assisted and guided hundreds, if not thousands of suffering individuals out those cracks and back to wellness.

Because your immune system, is severely compromised
only a comprehensive holistic approach will work, in my opinion.

Let me know, if you need more details in anything

Please note that my suggestions and comments are not intended as replacement for medical advice.

Best,
Niko