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15607012 tn?1442449750

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

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.
Best Answer
13167 tn?1327194124
Ryan.  at this point,  you should be able to get insurance.  If you have no income,  you are in luck!!

I've read through this thread and there doesn't seem to be any medical facility taking charge.  Folks here on this thread are really helpful and suggesting things,  but you need the Mayo clinic or some other clinic with an equal reputation for taking charge and driving this to ground.  

It seems to me that all the medical professionals so far have run a few tests and shrugged their shoulders and passed you on.  

Before you die,  sign up for free health care and go to the Mayo where a comprehensive staff will care.

Best wishes,  and prayers.
27 Responses
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1530171 tn?1448129593
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

Helpful - 1
1530171 tn?1448129593
Hey Ryan. You're so right, life can change dramatically, in a ..blink!

It is not necessarily the effects of a single disease, condition, imbalance,
event, etc. but rather the cumulative effect - or total load of these on your immune system which has brought you to this state of health.
And you have a heavy total load!

Some observations:
-The  Brown Recluse spider bite, likely caused some degree of systemic
toxicity.
-Exposure to highly chlorinated water at a young age is very harmful,
as the younger the skin, the faster the chlorine gets absorbed!
--Mold is just  like a poison (mycotoxic) and any long term exposure may have put you at risk, but the extend of long term effects are unknown.
Bathroom, kitchen etc. must be well ventilated and make sure the walls and ceiling from the inside are free of any mold as well.
An exhaust fan (vented to the outside) helps keep moisture out, so this won't be a recurring issue to further expose you to mold.
Professional mold cleaners have instruments to test  for mold from inside the walls.

-  Head trauma involvement in tooth decay, hard to establish.
It probably has to do with:
a. Calcium leaching from your teeth, in order to buffer the high acid levels in the blood from excessive caffeine and other acid producing drinks and foods.
b. Excessive sugar intake .  Bacteria in the plaque use sugars to produce acids, which break down the enamel and tooth decay starts!

-A naturopathic doctor can sign a test requisition form in Ontario Canada.
IDK about the state of Texas. Any Holistic MD would be able to, I think.

-B12 Methylocobalamin sublingual drops.
- D3 with K emulsified sublingual drops

- Candida self-test. Search under "saliva test for candida" . I would be very surprised if you don't have candida.
A comprehensive long-term approach incorporating an anti-candida diet, stress reduction, anti-fungals(coconut oil is the best natural anti-fungal, works oral & topical), high quality multistrain  probiotics etc.
You need to ingest 4-5 T coconut oil daily, but must start with 1-2 the first week and increase to 2 for week 2-3 until your reach 4-5T in week 4 or 5.
The gradual increase, ensures that you do not get serious die-off symptoms. These fungal organisms play can be nasty.
I personally have been using extra virgin organic coconut oil for years.
I understand how hard it is to quit carbs and sugars.
Plus you're limited as to what you can consume safely.
They're addictive in a way, since it is those nasty fungal organisms, which create the craving for you, as it's their main diet.
Any carbs you consume are feeding the fungus.
The main byproduct (in the body) of a Candida overgrowth is Ethanol (alcohol) leading to Acetaldehyde, which can lead to significant toxicity.
If you have adequate amounts of glutamine, selenium, B3 (niacin), folic acid, B6, B12, iron, and the trace element molybdenum, acetaldehydes continue to be metabolized into acetate, which can be excreted or converted further into acetyl coenzyme A.
And don't forget coconut oil. It might work even better than fluconazole, which doctors commonly prescribe for fungal infections.
You can also visit the coconutresearchcenter website- very informative - for more details.
-Untreated prolonged candida eventually leads to Leaky Gut Syndrome, also called Gut Dysbiosis, which is more-or-less the beginning of serious systemic disease development.  PEG test for LGS


I suggest, you avoid attempting treating the adrenal fatigue on your own. Leave this for the Holistic practitioner. It's complex!
You need some adrenal testing -I think I mentioned the Functional Adrenal Stress profile if you want to look it up FYI only.

Any questions , just post or PM me, anytime.

Cheers,
Niko


Helpful - 0
15607012 tn?1442449750
Hey Niko! I sure hope you're doing better after your near miss the other day. That was insane, but it just goes to show how quickly things can turn bad. That's the one lesson I've learned recently for sure.

If some of my problems are head injury related and can be reversed that would be great. What doctor would run an IGF-1 test? Would a holistic practitioner be able to order it?

As I've found out through all of my research it turns out all the junk food I was ingesting may have been feeding the (possible) candida overgrowth, which could have existed for years and suddenly exploded due to the shock of high stress to my system. Something has been starving my body of nutrients over the years so this all seems to fit.

I'm still looking for a holistic practitioner, but since I'm limited financially I'm not able to do anything at this time. I do have an online fundraising campaign and I've managed to raise $1,400 thus far so maybe things will get off the ground soon. I do need to get with a holistic practitioner about being thoroughly tested for fungal, mold and parasite infections.

I'm going to do everything I can do on my own to help the recovery process.

I'm about to purchase some liquid B12 to do a trial run and if it goes well I'll also do a trial run of liquid D3 and see if I can get the tingling and numbness to subside since some of my symptoms seem like they could be simple vitamin deficiencies. I don't want to take a lot of things at once to make it easier ruling anything out if something goes wrong. So I'll start with liquid B12 for a few weeks and see how it goes.

Are there any dietary guidelines other than reducing sugar intake to help with candida?

What are some additional things I can do at home for adrenal fatigue? I've done a lot of research, but I may have missed something.

Here's some additional information, which may or may not be relevant.

Note: My teeth didn't start to decay until after I hit my head.

Note: I've had allergic reactions to metal since I was 9, which is also when I started having many rashes develop all over my body. No tests have confirmed this though. I've always wondered if a metal allergy also means I would be allergic to iron in foods and vitamins?

Note: I used to swim in a large and highly chlorinated round metal cow water trough when I was 5. Lots of exposure to chlorine, which could have made me become sensitive to it.

Note: I was bitten by a Brown Recluse spider in 2003 just months before the 2004 flare-up. I almost lost my hand. My immune system does seem to be looking for some kind of unidentified foreign invader. Could the toxic venom do that? Even after all these years?

Any thoughts?

Thanks,
Ryan
Helpful - 0
15607012 tn?1442449750
Hey there SM and thank you for your response.

My quality of life back when I was 17 before my head injury or any exposure to anything was great. There's absolutely nothing I could possibly complain about. I was the popular outspoken funny guy in school and my home life was great at both of my parents homes. I was always happy and never remember feeling down or bored at all. Things were about as good as they could get.

After my head injury in 2002 I did see a significant reduction my quality of life, but the biggest hit by far was in 2013. My pre 2013 symptoms were just symptoms that were limiting the things I could do while the post 2013 symptoms stop me from doing almost everything.

Right now I spend at least 90% of my time laying in bed. Getting up to do anything makes some of my symptoms worse; namely shortness of breath, heart palpitations and blood pressure fluctuations that doctors are misinterpreting as a panic attack. In my current condition I'm not able to eat any of the foods I used to enjoy eating due to the sudden development of allergies. I'm not able to watch TV, play video games or listen to music because it stresses me out. I have trouble riding I vehicles. I'm not able to give myself a shower or bath because the movement makes some symptoms worse and I have a reaction to the water.

So basically my life right now is just me laying in bed in a room by myself reading. That's it...

Once upon a time I could type 98 WPM, but that has diminished significantly over the years especially the last four years. I've been having a lot of trouble using a keyboard and mouse actually. My typing skills and presence of mind is a bit misleading here. I type these replies with one thumb on a tablet while lying in bed. Sometimes it takes me hours to complete a short reply. Spell check and autocorrect help a lot by allowing me to communicate without sounding like a lunatic, which is a luxury I do not have in person. If you heard me speak I sound like a disorganized lunatic because I lose track of what I'm talking about and that causes me to stutter and stumble through a conversation, which is one reason why I believe I'm having trouble with doctors thinking I have psychological problems. Keep in mind the very first doctor I went to in 2004 thought I had suffered a stroke if that tells you anything.

I'm currently trying to stay in a clean environment and limit my exposure to dust, pollen, pets, foods, and chemicals. I'm really sensitive to cleaning products and anything with a fragrance now. As soon as I smell a fragrance I get this odd feeling in my sinuses and this pain in my lungs then I start coughing. The pain in my lungs feels exactly like the type of pain you feel when you breathe lot of cold air. The coughing reaction happens with everything from cologne to shampoo. If you've read my story you're familiar with some of the things I was exposed to that I may have inhaled, which could have damaged or infected my lungs resulting in a systemic response. There is a condition called "farmers lung," which is caused by many things. Breathing the dust from chicken feces and mowing are two things that can cause farmers lung. Some types of farmers lung are caused by mold and fungus, but it can also be bacterial or viral and I haven't been tested for anything.

Hey Niko I'll get a response to you shortly. I have to take a break, but I will say I'm glad you're OK after that near miss. Someone is looking after you!

Again if you or anyone else has anything to add or if you wish to ask any specific questions about anything please feel free to do so.

Thanks,
Ryan
Helpful - 0
1530171 tn?1448129593
Hey Ryan, don't mention it, I just hope that you will actually manage to use some of these suggestions successfully.

In regards to a skull examination, I think  the IGF-1 test for low Growth Hormone might reveal some more specific information, thus avoiding another
"wild goose chase", with MRIs, CT scans, SPECT etc.
Also the advantage here is that should  the IGF-1 indicate a HGH deficiency indeed, then  you might be able to possibly reverse some of **** negative effects, provided you meet the HGH treatment criteria.
You may need additional tests to diagnose an HGH deficiency,
if the IGF-1 is positive.

An anti-parasitic protocol is almost identical to an anti-fungal protocol
and since you seem to be a fairly seasoned researcher, I'll leave out the lengthy explanation, as you can research all this on your own.

Earlier today, a mini-van after doing a "rolling" stop at a stop sign,
hit the rear wheel of my red bicycle as I was turning left (I had priority) and
wiped  out and fell hard on the pavement- and yes, I was wearing my bright red bicycle helmet at the time.
Sometimes cyclists and their bikes are known to become invisible  on the road to some drivers, lol!  
Other than some scrapes,scratches and some pain, I'm OK, but, I find myself a bit restless and impatient tonight, therefore my post won't be as lengthy as usual.
I guess, my body is telling me what my mind is not!
" I need to recover, so you need to get some rest"

Anxiety is common symptom in adrenal fatigue and some of your doctors were picking  this up (minus the adrenal fatigue part, lol!).

Candida, paradoxically, can cause either weight loss or weight gain.
In your case, candida affected your digestion and your G/I system, causing the weight loss and also the inability to gain weight when you were eating (the worse things possible BTW) non-stop!

Cheers,
Niko
Helpful - 0
15439126 tn?1444443163
I'm wondering about your quality of life at present.  Any comments?   I notice you're a prolific and accurate typist (so, dexterity and clarity of thought appear unaffected).

My first impression is that you've developed environmental sensitivity due to a weakened immune system (coping with the passing of a family member would tend to weaken one's immune system, you were also subjected to high stress and exposed to a wide variety of filth and toxins on the farm which may have overwhelmed your body's defenses).

My conjecture is that a prolonged stay in a very clean setting (essentially free of industrial toxins) may allow your body to slowly lose its hypersensitivity to incidental environmental toxins you're doubtless encountering in your present setting, and hopefully most if not all of your symptoms would fade away after an indefinite number of months.

But then, I'm very puzzled at your not mentioning that present exposure to chemicals or fumes is amongst those things that worsen your symptoms.  Given that, my conjecture may be completely unfounded.
Helpful - 0
15607012 tn?1442449750
Here in the United States coffee is second only to soda as the most popular beverage of choice. In the southern United States it isn't uncommon for children to drink coffee, but especially today with the rise of establishments like Starbucks and all of their sweet treat like coffees with vanilla, caramel, and chocolatey goodness.

My entire family is big on coffee. I can remember getting up on the countertop early in the morning when I was 7 and setting up the coffee machine myself. It quickly became my primary beverage second to Dr. Pepper or Pepsi. This caught up with me much later on in high school in 2000 my kidneys hurt bad because I wasn't drinking any water. Just coffee and soda. I did make a few changes by switching to caffeine free Sprite, POWERADE, and of course water.

In those days I ate just like everyone else. Breakfast, lunch and dinner. Only with a lot of coffee in between meals. Over the years I did reduce the sugar intake by only putting in 3 scoops of sugar per cup of coffee, but with as many cups as I was drinking it was still a lot of sugar. I'm surprised I'm not a diabetic, which hasn't been ruled out yet.

In 2009 after trips to the dentist I decided to quit drinking coffee. I quit cold turkey and haven't had any coffee since. That's when my snack food eating went off the charts. Snack cakes, creme filled cookies, Reese's Peanut Butter Cups, cake, doughnuts, brownies, and ice cream all day every day in between breakfast, lunch, and dinner. I literally ate nonstop.

Note: I barely gained weight through all of that going from 124lb in 2004 to 140lb by 2012.

As an adult and being more aware of medical conditions I have always thought I had something wrong with my metabolism. Some things just not right especially considering how rapid my weight loss was when I got to where I couldn't eat.

I do believe I will benefit the most by finding a holistic practitioner and seeking treatment for adrenal fatigue. I also need to be tested for parasites and fungal overgrowth and get treatments for those . I also need to have my skull looked at by someone competent.

I've taken down lots of notes from your posts Niko. I'm sure you're closer to pointing me in the right direction to get answers than any of the doctors I've been to.

I'll move forward with a plan and I'll post updates here when available.

Thanks for all the suggestions!
Ryan
Helpful - 0
15607012 tn?1442449750
Hey Niko thanks for getting back with me and I apologize for the delay in getting back to you. Let me cover the head injury and then cover everything else in separate post.

The head injury occurred in the summer of 2002 (17 y/o). It happened on the farm as I was helping my father build the fabrication shop. He was on the second floor and I was on the bottom floor when it happened so he didn't see it. I was down stairs preparing roofing materials and when I finished I ran through the shop and was just going to jump out the bay door. The problem is I didn't know my dad had affixed a downward hanging board to help secure the cat walk for the second story. I ran, jumped, and slammed the back of my head into that board at full forward speed (I was looking down and that's how I hit the back of my head). I instantly fell to the ground and was dizzy. It caused me to lose my vision for a moment. First turning solid black then turning solid white. My dad yelled "What the **** was that?!" and... 'I told him I just hit my head!' He said "there's no way that was you hitting your head because the entire second story of the shop shook!" then he said "if that was you hitting your head I would have come down to find you laying in the ground dead with blood everywhere."

My mom wasn't there. My parents were divorced (since 1995) and at the time I was staying with my dad for summer break. I was never taken to the hospital for an evaluation because my dad never believed that loud boom that shook the second story of the shop was me hitting my head. He said "well, you're up walking around and there's no blood so obviously you're OK" and that was that.

A few months later when back in school I began noticing I was having Involuntary muscle movement and speech issues, but I didn't really feel concerned about it. Until 2004 when I began having trouble walking, speech issues, trouble with balance and memory. That's when I first started going to see doctors. At first they thought I may have had a stroke because my symptoms were that bad. Then the beginning of a nightmare began when doctors started trying to diagnose me with an anxiety disorder based on elevated heart rate, high blood pressure, and shaky hands. My fingers move on their own. They twitch left or right. Sometimes my hand will suddenly open while I'm holding something. I began dropping things and having trouble using my hands in 2004. I lost the ability to draw, play guitar and the piano.

Involuntary muscle movements occur in my fingers, hand, feet, legs, eyes, and even my neck, which will cause me to suddenly jerk my head back. This is why I do not drive because the sudden movements make it too dangerous and I would not be able to maintain control of a vehicle. Me using the tractor on the farm is dangerous enough. Besides, something has gone wrong with my vision and corrective lenses do not help. I have trouble making out detail especially in low lit conditions because there's something in my vision obstructing my view and it started right after I hit my head. It looks kind of like TV static and in dark conditions it actually 'glows' bright enough that I'm not able to see the stars in the sky at night or see where I'm walking. Through all of my research the only condition that even remotely sounds like what's happening with my vision is something that happens to diabetics with out-of-control diabetes.

Sometimes I get this really weird sensation on the back of my head right where I hit my head. It's indescribable, but whenever that's happening I have a spike in cognitive issues.

I've mentioned this to more than 20 doctors from 2004 to 2015. I'll tell them about the head injury and then I'll cover all of my pre 2013 symptoms. They'll listen to all of that and then start trying to talk to me about anxiety and they'll give me a prescription for anxiety medication before sending me on my way. No tests no nothing. They want this to be mental health related so bad they're just flat out ignoring everything I say. You can touch the back of my skull and feel where the bones have been remodeled. It's an indent that feels about 3mm deep spanning across the back of my skull exactly where I hit. Its very distinctive. Any time I offer for a doctor to feel my skull they decline and simply say "oh, that's not necessary" as they proceed to write me a script for anxiety medication. It's frustrating to say the least.

I'll make another post about caffeine and sugar.

Thanks,
Ryan
Helpful - 0
1530171 tn?1448129593
OK now this starts making some sense.

Massive Head Injury.

Never treated, never assessed? Your mom was nurse at the time?


IGF-1 test for low Growth Hormone. Very important !
Deficiencies in this hormone are especially common in patients with moderate to severe traumatic brain injury.
Growth Hormone has many important roles, one of them pertinent to you
is its remarkable function to increase the number of receptors for ALL hormones, throughout the body, thus increasing the body's sensitivity to these hormones, which is particularly useful to prevent the damaging effects of their deficiencies.
It also promotes the regeneration of nerve tissue and it helps extend the longevity of damaged neurons.
Your symptoms are consistent with unresolved hormonal deficiencies.

Caffeine Abuse has multiple negative systemic effects on the neuropsychiatric, cardiovascular, endocrine, and gastrointestinal systems,
increasing the risk of bone loss ( also in teeth)
Some possible symptoms :
Chest pain
Irregular heart beat
Mood swings
Nausea
Tremors
Insomnia
Anxiety
Stomach pain
Rapid respiratory rate
Severe headaches
Blurred vision
Vomiting
Hallucinations
Seizures
Liver/Kidney damage
Chronic mood swings
Blackouts
Memory loss.

Where were your parents/ guardians, when you were 7 years old?

And all that sugar everyday? It's a miracle you're still alive with all that caffeine and sugar that entered your body and your brain!

I took a look at some of your photos, which show some of the effects of all this from the outside.
No, you should stop looking for another diagnosis, with the hope of a specific treatment for it.
Don't concern yourself with people not posting more stuff at this point,
-no disrespect to other posters- but you risk getting information overload
and drowning in a sea of suggestions, suspicions and  ideas and not be able to do anything with it!

It's time now to detox, to cleanse, to rebalance, to correct deficiencies, to repair your  leaky gut,  to eliminate candida,to treat your adrenal fatigue.
You have a small window of opportunity to get this done, before any serious organ involvement.
Use the internet and start a fundraiser.You don't need big money to consult with a reputable Holistic Practitioner or Functional Medicine Doctor who have experience in G/I Digestive and Adrenal/Endocrine issues.

Please give my advice serious consideration.
There's no miracle approach, no wonder drug or therapy, no Dr House,
only a step by step long-term comprehensive natural and holistic treatment plan, facilitated by a practitioner, as I mentioned above.

You have some homework to do, with tons of information to shift through,
research on your own and put it all together.

Recovery will take a very long time (eg to eliminate candida you must  be on anti-candida program  for 1-2 months per year of candida, whose symptoms  btw do not show up for years! , adrenal fatigue stage 2B
about 6 months to 2 years, stage 3 longer)

Wishing you well.
Niko



Helpful - 0
15607012 tn?1442449750
Thank you all for all the feedback.

Note: I'm using a tablet and while scrolling my finger randomly chose a best answer by accident. I've contacted the moderators of this forum about it and they tell me this is a very common issue, but it can't be undone. I used to be an It professional before I was disabled by medical issues and I've ran a forum before so I know for a fact that it can be undone.

I certainly don't want people to stop helping me just because it looks like I chose a best answer. I did not choose a best answer and my problem is not resolved.

If anyone has anything helpful to add or if you think my condition sounds like something you've heard of or experienced yourself please say something.

This is killing me and I will die if this isn't figured out.

Please take a look at the photos of me in the links below. I need help.

▪http://www.mediafire.com/view/1lkg0tw4diqewod/Photo820.jpg

▪http://www.mediafire.com/view/cspityd7c8gjnig/Photo1053.jpg

▪http://www.mediafire.com/view/23o8grauuilz73y/Photo783.jpg

▪http://www.mediafire.com/view/rh7hus53emz6yq9/Photo1181.jpg

▪http://www.mediafire.com/view/todzo9asr566oq0/Photo1178.jpg

▪http://www.mediafire.com/view/keskc70znzvtebt/Photo859.jpg

▪http://www.mediafire.com/view/sycp9hgh5cadg28/Photo1497.jpg

▪http://www.mediafire.com/view/k3tek14n2q8eft5/IMG_20150916_204024.jpg

▪http://www.mediafire.com/view/hmr95nazyntqhyw/IMG_20150916_204119.jpg

Thanks,
Ryan
Helpful - 0
15607012 tn?1442449750
Hey everyone! Thanks for the responses! All of the feedback I've been receiving here has been great. I've received more help here the last few days than I ever have at any of the doctors offices I've been to over the past decade.

My main goal with this thread is to just bounce ides around, see if there are any common themes, receive feedback on my thoughts, get an outsiders perspective, and ultimately come up with a plan. I'm currently looking for a holistic doctor near me that might be able to help.

Additional information...

When I first started seeing my PCP he said he's thinking this looks like Lupus. He and nine other medical professionals have over the past two years have suggested I see a rheumatologist. So perhaps I have something like Lupus or Multiple Sclerosis. My Allergist did suggest I see an Immunologist to obtain a better understanding of what my immune system is doing.

The big thing I'm leaning towards is stress as a trigger. In August of 2013 I was emotionally stressed and physically stressed with all the farm work. There is evidence to support Adrenal Fatigue.

What makes my symptoms worse?

▪ Movement - (standing up, lifting, bending).
▪ Sitting up right
▪ Riding in vehicles (going fast) **
▪ Bowel movements
▪ Watching action movies **
▪ Playing intense video games **
▪ Listening to my favorite music **
▪ Intense conversation or debate **
▪ Sudden loud noises **
▪ Stressful situations **
▪ Sexual stimulation **
▪ Doctor visits (anxiety) **
▪ Foods
▪ Anger **
▪ Night

The majority of those triggers deal a lot with the SNS, adrenaline, and other hormones. Any type of stimulation seems to make this worse, which as I've read does occur with Adrenal Fatigue, Adrenal Burnout, Adrenal Insufficiency Syndrome.

To touch on what Niko said some of the problems I'm having with sexual stimulation may be normal, but my body just can't take it at the moment. My body's reaction to that stimulation is very negative. One thing I did forget to mention is that sexual stimulation causes me to break out in a rash on my penis and across my chest, which to me sounds like a very bad hormonal imbalance and that is why I decided to go to an Endocrinologist, but my Endocrinologist would rather argue with me about whether I should even be seeing her rather than listening to me and assessing my symptoms.

That takes me to the insurance and clinics that RockRose suggested. It would be nice if we lived in a perfect world where simply having insurance and going to a facility with highly trained doctors guaranteed you a diagnosis, but it is my experience that unfortunately that's just not the case. My condition has gradually worsened year after year and doctors have gone further and further in the wrong direction.

Money is also a big issue here. I'm unable to work, I don't have insurance, I don't qualify for government aid. I've got a GoFundMe page where I'm taking donations and a lot of people are stepping up to give me some advice about programs and such, but I'm living with family and on these aid applications it asks "what is the total income of the household?" Even though we're in poverty my step dad brings in enough money to disqualify me for help.

If this is stress induced Adrenal Fatigue, what type of treatment options are there? Also, during the two years of researching my symptoms I've found evidence that mold/fungal infections can damage the adrenal glands and cause problems. I've looked into adrenal crisis and it sounds a lot like some of what happens when this suddenly intensifies.

Additional details

▪When I was born the umbilical cord was wrapped around my throat. My mom said my o2 sat dropped down in the 20s and I was the deepest blue she had ever seen a human being. I do have learning disabilities and I stuttered as a child.

▪I was diagnosed with scoliosis as a child. You can really tell now that I've lost so much weight.

▪I had a massive head injury in 2002 and never got medical attention. I can still feel where it dented the back of my skull in. I've had trouble seeing ever since. Doctors have never looked into this, but I do know that head injuries can lead to conditions like ALS. Just after I hit my head I lost the ability to see in the seconds after. I never lost consciousness, but my vision faded to black. It was like that for about 30 seconds and my vision returned then slowly faded to solid white. When my vision came back it wasn't normal after that. I had to get glasses the same month I hit my head,  but the glasses don't help. Not long after that I began having significant memory issues, involuntary muscle movements, insomnia and a list of symptoms that eventually sent me to doctors in 2004 and they initially thought I had a stroke because I was having speech problems and I could only say 4-5 words and I would forget what I was talking about. My speech was very choppy.

Then in mid 2005 one morning while making breakfast I fell to the floor of my mom's kitchen (I have no memory of this). My mom being a nurse rushed in to tend to me. When I woke up she told me she has no doubt that I was having a seizure. She said my eyes were rolled back in my head and my entire body was shaking. After that seizure I got much of my memory back and regained more control over my body, but I would lose my balance still and drop things a lot. I often wonder if this is possibly causing problems. It did change my personality and some details about me changed as well. Apparently my favorite color was red before my head injury. I have no memory of that. As far as I can remember my favorite color is blue, but my family tells me my favorite color was always red.

▪Starting in 2007 I began having three odd symptoms. Sometimes my ears do not hear correctly when I wake up in the morning. It's like my hearing is turning on and off. It clears up pretty quickly. The other thing that started happening was while sitting at my desk I would suddenly lose consciousness for a split second. It would last for less than a second. I also began having trouble riding in vehicles in 2007.

▪Over the years I've had intense sugar cravings to the point where I became a binge eater. Before this sudden explosion of symptoms I basically ate nonstop all day and I never would gain any weight. In fact, I've had difficult time trying to gain weight my entire life. I weighed 96lb my senior year of high school and finally managed to get it to hover between 135lb and 140lb.

▪I started drinking coffee at the age of seven and coffee became my primary beverage up until 2009. That's nearly 20 years of daily caffeine. At least 5 pots of coffee per day with each cup containing 4-6 spoons of sugar. After I quit drinking coffee is when I became a binge eater. That's why I rapidly lost weight when I got to where I couldn't eat in 2013. (I quit drinking coffee due to heart palpitations).

There are lots of little bits of information and I don't know what is relevant and what isn't. If you could help me determine the most pressing issue I'd appreciate it. I need a starting place. My mom thinks I should start by looking at my circulatory system, but that doesn't make much sense to me. We are far too poor to waste any money on tests that aren't going to reveal anything that's for sure.

Thanks,
Ryan
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1530171 tn?1448129593
Hi RochRose.

Great advice pursuing  insurance free coverage.
I live in Canada, where this is a non issue and therefore don't even think about it when replying to US based members.

The suggestion of a reputable clinic taking charge and figuring this out for Ryan is however, to my humble opinion, very optimistic.

A few points to support my opinion:
1. Lyme disease is NOT recognized as a chronic infection by the IDSA
2. Same for Pathogenic Mycoplasma and it's Co-infections
3. Leaky Gut Syndrome (Intestinal Permeabilty) is NOT an established medical diagnosis. Candida yeast infections (usually precede LGS) are rarely investigated.
4. Adrenal Fatigue is not an established diagnosis until it reaches stage 4
(adrenal failure/insufficiency)
5. Hypothyroidism type 2 (thyroid resistance) is NOT investigated!
Standard tests T3, T4 and TSH cannot detect type 2.
6. Neurological B12 and Folate  (methylated forms) levels are not revealed by standard tests.
7. Hypomethylation is NOT in the diagnostic protocol of any specialty. ???
8.Therapy with  Natural herbs and supplements (when prescribed medications do not or cannot bring the desired results) cannot be implemented, as it is not within established treatment guidelines.
Often it is illegal/criminal to prescribe a natural therapy.
9. PTSD and other traumatic/emotional imbalances are not considered,
nor investigated. Many conditions have a very strong emotional/stress component and will not resolve, until the emotional imbalance is cleared.
10. Most Autoimmune conditions are considered incurable, therefore only symptom management with drugs is the only treatment available.

I can go on, but I'm sure, I made my point.
My intend is not to be critical, nor negative and under different circumstances, where time and money were not an issue, by all means, this would have been another possible consideration.
Insurance coverage will not cover ALL his expenses, including the expenses of the person accompanying him.

I have no idea what the wait time is in order to get in such a clinic,
but if it is anything like here in Canada, it is very discouraging.

Cheers,
Niko


  

Helpful - 0
1530171 tn?1448129593
Re: slow heart rate and palpitations when climaxing.
It is normal to have slow heart rate (yours was a little too slow perhaps) as the vagus nerve which is responsible for this, engages right after an orgasm, while your higher adrenalin output after sex is stimulating other parts of your heart and your cardiovascular system, possibly causing the temporary tachycardia symptoms (adrenalin has a very short half life).
I suspect an over- stressed vagus nerve and dysregulated adrenals are playing a key role in this.

Within all your suffering, it is good to know that  there's no significant organ involvement  and that your heart is OK.

Your low CD-4 count has probably due to the flu or other viral infection, at the time of the testing, which caused a temporary CD-4 decline.

Another suggestion, which I forgot to mention is to look into demulcent
herbs,  rich in mucilage which can soothe and protect irritated or inflamed internal tissue. Look into aloe vera, slippery elm, licorice and others.
Also look into the GAPS program and SCD (specific carbohydrate diet),
as I feel you will find a wealth of valuable info.

You need to get your digestion and G/I function normalized , to the point where you can absorb and assimilate nutrients and vitamins much more efficiently, from everyday healthy foods.

My 2 cents of wisdom for today: You are what you assimilate and what you eliminate. Not just what you eat!

And you're welcome.
Niko
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15607012 tn?1442449750
Thank you so much for getting back with me Niko. I am certainly taking everything you mentioned into consideration. I'm writing everything down and I'm going to come up with some kind of plan.

I certainly agree with you that conventional medicine is not going to help me here because many doctors don't seem to think outside the box. Some of the doctors that do give me prescriptions are only treating my symptoms instead of trying to figure out what it is. It's also very clear to me that my doctors are not communicating or sharing information with one another.

My case certainly has a lot of complexities because of all the possible things that could have come from what I was exposed to in a short period of time. I was just trying to get everything done on the farm so when my dad came home from the hospital he wouldn't have to worry about anything. What happened is he came home and a few weeks later his son started dying from some mystery. My dad actually had to carry me into the hospital that one time because I was unable to walk and was shaking really bad. For no reason... All we were doing was sitting at home watching documentaries when some of this would occur. Nothing stressful or bad, but at that time I didn't know I was having allergic reactions to food and I was just trying to eat like I always have.

I believe those first ER visits were due to the beginning stages of anaphylaxis. Trouble breathing, wheezing, throat closing up, numb all over, and shaking. Doctors were misinterpreting it as a panic attack. They would give me something for anxiety and send me home. Most of my ER visits were basically a waste of time and I'm over $80,000 in debt now thanks to all of this.

This last ER visit a few months ago doctors said via x-ray that it looked like feces was stuck to the wall of my large intestines on my right side and new feces is struggling to get past it and that might be what's causing my abdominal pressure, discomfort and pain. Right, I told doctors in the beginning it feels like I have a bowel obstruction, my bowels are filling up, and my stomach isn't emptying. Resulting in not being able to get food and water in me resulting in dehydration and weight-loss. They ignore everything I say though. Instead of possibly giving me an enema or providing any help or just doing some simple investigation once they said it looked like I had a bowel blockage they gave me a shot of morphine (which makes no sense) and discharged me from the hospital.

I did do a follow up with my Gastrologist a week later and I provided him with this information, but since I'm not able to work and have no insurance he wanted to go the cheap route by prescribing me laxatives instead of doing a EGD/Colonoscopy and actually investigate. So if feces was stuck to the wall of my bowel a few months ago it's still there now.

Note: I have had three abdominal CT scans over the past two years that I insisted should happen. One with contrast and two without. The radiologist says all of my organs look normal. No blockages no nothing. No sign of gallstones, kidney stones, or swelling. They say the adrenal glands, spleen, and pancreas all look normal.

I did specifically request a heavy metal test about nine months ago and the tests came back negative. Although I'm not sure if it was just some basic test or if they seriously looked into it because just about every basic test they run keeps coming back "normal" or "within range." They only find things when they run advanced tests and they wouldn't run any advance tests had I not requested it. Had I not insisted on some tests being ran I wouldn't know anything right now.

When I told them to give me an HIV test they actually argued with me against it. Then when the test came back with abnormally low CD-4 counts there was a big HIV scare. All of my doctors were certain that's what this was. When 20+ advanced HIV screenings came back negative doctors basically told me to stop coming to their office as if I'm just wasting their time. Now they are convinced there's nothing to find, which is basically a death sentence for me if this doesn't get identified.

In the past two years I've been prescribed Flovent, BuSpar, Lorazepam, Pantoprazole, and Sucralfate. I took them for a year and got worse. I've also had Amoxicillin in the beginning when they suspected this was just siunitus and I was prescribed Clindamycin by my dentist before having a few teeth removed.

I'm having some kind of sexual issue strongly associated with this. I've had to stop doing anything sexual. I can't even think of anything sexual without a very severe reaction.

I haven't been in a sexual relationship for nearly a decade, but I did masturbate up until a year ago. Gradually masturbation started to cause very serious symptoms. As I begin to climax my heart slows way down, palpitates, I struggle to breathe, I feel pressure in my abdomen, my chest gets tight and my arms and legs go numb. It's followed by a sudden racing heart of 122 BPM or more. The one time I had to have an ambulance because of it and my heart rate was 32 BPM on the monitor. I thought I was going to die. Anything sexual causes my heart to slow down like that. I'm under the impression that if I had an orgasm my heart would actually stop. It's scary enough to cause me to stop anything sexual the past year. I've been masturebaiting twice per day everyday since I was really young and I never had a problem before.

Unfortunately doctors are misinterpreting my symptoms and not listening to me. This sexual problem has gotten me misdiagnosed with General Anxiety Disorder just because of the fast heart rate that occurs afterwards.

One of the first two doctors I went to in 2013 was a Cardiologist and he said everything looked great after running an 24 hour EKG monitor, nuclear stress test, and a sonogram of my heart and the arteries in my neck and abdomen.


The only additional information I can provide is genetic risk factors.

Genetic Risk Factors

▪PT Grandmother - Colon Cancer (deceased)
▪PT Grandfather - Stroke / Alzheimer's (deceased)

▪MT Grandmother - Stroke / Alzheimer's (deceased)
▪MT Grandfather - Prostate Cancer

▪Mother - Basal cell carcinoma / 12lb ovarian cyst.
▪Father - Kidney cancer, bone cancer, liver cancer, polyps in colon, type 2 diabetes, hepatitis (deceased).

▪ Family history of cancer and high blood pressure on my mother's side.

▪ Family history of gallstones/gallbladder failure
and cancer on my father's side.


That's basically everything. It's a nightmare. I'm not ready to die, but I've already started getting all of my affairs in order. I'm trying to stay optimistic, I have to be realistic. Even if they do find it I'll probably suffer from some long term damage from not getting it identified in a timely manner.

Any additional thoughts or ideas from you or anyone else would be appreciated.

Thanks,
Ryan
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15607012 tn?1442449750
Hi Sharin and thanks for your response. My father did spray a lot of herbicides and pesticides around the farm (gallons). He would often spray much more than the necessary amount in high concentration. In this case he hadn't sprayed anything at the time I became sick since he was in the hospital for nearly a month, but while he was away in August 2013 I did spray a small amount of Hot Shot under the eve of the porch because of the wasps. So this is also a possibility.

Note: Before my dad died of "cancer" he had similar symptoms as me. Rashes, flu like symptoms, trouble eating. He kept complaining that it felt like he had a "never ending cold and strep throat." That's what I keep telling doctors about me. Also, the highest concentration of mold was in my dad's bedroom so if it's mold related he would have had the highest exposure and he is deceased now. When my dad got to the stage I'm at right now with my symptoms my dad only lived for three months.

My theory here would be that perhaps we were suffering from mold poisoning and didn't know it, but the stress of my dad's cancer diagnosis may have stunned our system enough to allow the mold and/or fungus to overtake our system. My dad did supposedly die of "bone cancer," but through my research I've found that fungal infections can be mistaken for bone cancer on MRI scans, which is what my dad was having done. Personally I do not for one moment believe my dad died of cancer. It seems as though he died from whatever is killing me.

When this began I went from 140lb down to 90lb, but my dad went from 244lb down to 110lb before he died. I've explained this to doctors and they ignore it completely because dad had "cancer" and was on chemo and radiation. They believe I'm just a hypochondriac mirroring my dad's symptoms.

I've handed my doctors the actual report from the company that tested my house. The company says if I'm sick I should definitely be tested because there are unusually high levels of mold in my house, but doctors have not ran any mold/fungal tests on me. They instead accuse me of printing a fake report from the internet even though it's 100% verifiable. My case has been mishandled by some fairly incompetent doctors.

Note: The chickens were sneezing and in poor health. The chickens, my dad, me, and my cat were all sneezing a lot in the few months prior to everything going to hell. The chickens basically all fell over dead one right after another mysteriously. My dad usually tended the chickens. I only did while he was in the hospital. I don't know if something like bird flu is possible or not. I've been walking around with this for two years whatever it is so I hope it isn't some kind of transmittible disease. I've been in doctors offices, grocery stores, and around small children. I've been living with my mom for a year and now she is getting down very sick. My step dad is doing the rapid sneezing thing too. This is basically a repeat of what happened to me and my dad on the farm. So I hope this isn't something transmittible. Doctors are not listening to me or taking anything I say seriously. They aren't running tests because they do not believe there's anything to find. They've even accused me of starving myself or doing something to myself intentionally for attention. So the doctors I've seen have fallen off the deep end. Instead of swallowing their pride and admitting they don't know what this is they would rather blame me.

I do live in Texas near Dallas where ebola first broke out in the United States so doctors here do miss big things on an unimaginably incompetent level. For example, one week before my dad was diagnosed with cancer he was diagnosed with a pulled muscle in his neck first. So my dad's diagnosis went from "pulled muscle in neck" to "terminal cancer with not long to live."  

I do not trust the doctors here.

I'm about to reply to Niko and I'll provide a few more details, but poison is a possibility. So is mold/fungus and a dozen other things. Unfortunately...

Thanks,
Ryan
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Avatar universal
On a farm?? Work with lots of pesticides and such.  I became chemically sensitive about 4 yrs ago. Never had probe in the past using stuff on my plant for bugs or in the house, but all of a sudden I did.
Took 2 years to get diagnosed.
Your symptoms sound so much like mine. Even the bloody sore in throat. Weak, joints ache. Weird bowels. Burning esophagus. Developed neuropathy in my arms and legs, made my feet and hands turn blue and ache. Burning chest and throat. Racing heart, shakiness, exhaustion.  Too much to list.
I now find being around any chemicals like cleaning charms, even some soaps and perfumes and make it worse. Even car exhaust, air freshener plugs ins.   Makes a diff if I can stay in clean environment.   Just using water.  Look up MCS
Multiple chemical sensitivty.
Some drs used to think it was all in the head, so did I,  they are finding that isn't the case.
Look up environmental illness.  
I hope that's not what you have   *****.
Helpful - 0
15607012 tn?1442449750
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
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15607012 tn?1442449750
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
Helpful - 0
1530171 tn?1448129593
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
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15607012 tn?1442449750
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
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Avatar universal
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
Helpful - 0
Avatar universal
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.
Helpful - 0
15607012 tn?1442449750
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
Helpful - 0
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