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.

[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

[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. 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

[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

[jsycz]

Hey Ryan

Are you of Mediterranean descent?

Cortisol was high enough for me to consider it high.

You need to see an immunologist and an endocrinologist and have all of your records sent and have them rerun everything. PCP too.


That VERY high Free T4 screams at me.

Some considerations could be Hashimoto's Thyroiditis, Graves Disease, but so do things like Mediterranean fever, [HIV may still be on the table],

Thiamine Deficiency is plausible. Take a B Complex Vitamin. Do not get gummys because they do not contain thiamine. The worst thing that happens is that you pee out excess.  

I have a few ideas but I would rather wait for the Immunologist to see you and see what they say.

Hope that helps.

[Ryan83]

Hey guys thanks for the replies. Here is some additional information.

Doctors I've seen

Family Doctors - (Blood work / CT scans)
E.R. Doctors -  (CT scans / Blood work / X-rays)
Pulmonologist - (Lung capacity / o2 SAT test)
Cardiologist - (EKG, Nuclear Stress Test, Ultrasound)
Gastrologist - (EGD with biopsies / Fecal smear)
ENT / Allergist - (Nasal CT / Allergy tests)
Infectious Disease Specialist - (HIV Tests)

Current diagnostic results

Blood tests, biopsies, and specimen samples have revealed:

▪ Dehydration (I'm frequently urinating)
▪ Low Potassium
▪ Low CD-4 Count (HIV NEGATIVE)
▪ High Eosinophil Count
▪ Eosinophilic Esophagitis (Autoimmune)
▪ Stool Samples (Negative for parasites)
▪ Food Allergies (Appeared 2013)
▪ Vitamin D Deficiency

I've had many tests ran and it would take ages to type them all out so I took photos of the results doctors have handed me or mailed to me and I placed them in a zip file available to download at the link posted below. I marked out sensitive information such as addresses and account numbers, but it shows all the lab values.

http://www.mediafire.com/download/x8akcpmg38aso2n/Lab_Results.zip

These tests are from 2013 - 2014. I haven't been able to do much in 2015 since I lost my health insurance, but the results from 2013 - 2014 are around the time when this first became active so they are very relevant.

There is additional information such as what I was doing just before I became sick and family history, but I'd like to get your thoughts on what I've provided here and answer any questions you may have.

Thanks,
Ryan