19 year old with Undiagnosed mystery (according to doctors)
 

I was very ill for 3-4 months last year due to doctors not knowing **** about anything... im 19 years old, 192cm around 95kgs, male and my life has taken a turn for the worst apparently from all the investigations i have done nothing is wrong with me! its horrible the following started 7 months ago first i had a million different symptoms then right now these are the only ones.


Note:

This all started after i had used injectable anabolic steroids as well as oral steroids + arimidex to control estrogen + other bodybuilding type drugs clenbuterol, DNP etc...


Symptoms:

* lethargy and fatigue all the time (no energy to do much of anything)
* Muscle soreness and cramping when i try to lift something and hold it for a while like carrying shopping bags my arm gets very sore quickly and i have to drop whatever im holding, huge reduction in muscle strength.
* bone pain all over sometimes and clicking/cracking of the joints, bones in the lower legs feel a bit painful and tender to the touch
* occassionally difficulty breathing, hard to breathe in deeply.
* loss of appetite and weight loss of 13kgs in 3 months
* sore throat, tingling in the nose and throat.
* reduction in the sense of touch.
* Periods where i felt i couldnt breathe, move or speak.
* Tingling in hands and feet and behind the thighs
* Always dehydrated and thirsty
* when eating food feels like its getting stuck sometimes or something is obstructing the stomach inside me.
* recent eye irriation like an infection.
* sometimes very cold hands and feet and chills (freezing cold) feels immune related body fighting something.
* Symptoms of psychosis and losing your mind
* Swelling of the face and body.

Current symptoms:

Some degree of Immune weakness (as shown by my t-cell count)
Muscle weakness.
Feeling ill often with middle ear infections and mild fevers.
Dizziness.
Reduction in the sense of touch.
Loss of smell and taste to some degree.
Arthritic symptoms at times
Fatigue, chronic at times.


Investigations:

* complete blood counts always appear normal, sometimes elevated lymphocytes and white cells suggesting infection, at present white cells are on the low side 5.0 (4.0 - 11.0)

* High IgE levels of 3810 normal range is 0-100 (immunologist said these symptoms cannot be caused by ige levels).... very allergic to dust mites and common grasses, take anti-histamine every day.

* Food sensitivity tests done and now avoiding any foods im sensitive to but it appears i'm not sensitive to many not even wheat

* Cytotoxic chemical sensitivity showed immune reaction to ammonium chloride (ammoniac), lynene and chloroform.

* DEXA scan showed normal Bone mineral density besides (low normal density in the spine)

* Lung function tests (spirometry) normal done requested by chest specialist

* CT scan of the chest showed residual thymic tissue but within normal limits for a patient of my age everything else normal.

* Abdominal ultrasound normal besides right kidney 13.5cm and left kidney 9.9cm

* colonoscopy normal and gastroscopy showed mild chronic gastritis and inflamed red mucosa (focal erosion noted) and endoscopy showed mild inflammation of the small intestine.

* endoscopy apparently normal besides mild inflammation ( according to them)

* endocrine problems (low thyroid thyroid peroxide autoantibodies elevated, low testosterone) - had these for a while so its definitly not whats causing symptoms although might be adding to it.

* Cortisol Synacthen test (acth stimulation test) normal

* Delayed sleep phase cycle (getting up 3-4 times a night sometimes to eat) like night eating syndrome) for the past 3 years. Low Growth hormone levels probably due to this, note i am very tall 192cm so i must've had high GH levels sometime in my life.

About to do a sleep study.

* random blood sugar test normal (3.4 - 7.0 ) mine is 3.9

* glucose tolerance test apparently normal

* All Autoimmune testing normal ANCA and ANA antibodies all normal as well as protein electrophores and rheumatoid factor normal!

* MRI of pituitary all normal

* Stool tests all normal no bacteria or parasites!



So basically i had no help from doctors.

So i did a hair mineral analysis. Found out i had elevated mercury levels 2.4 (0.0 - 0.6). Most likely from the steroids.

I also believe all my symptoms are due to B12 deficiency and yet my doctor still wont treat it! Im dong Urine MMA test to see if this is true. I DO NOT BELIEVE IN BLOOD B12 levels they are useless as they can be low normal or high and not represent what is happening in the cells. According to all the symptoms in wikipedia it is very indicative.

I now have a few things which i know are wrong:

1. genetic mutations caused by the steroid use
2. Vitamin B12 deficiency due to mild chronic gastritis/malabsorbtion
3. Elevated mercury will cause immune suppression.
4. Severe candida overgrowth causing another 10-15 symptoms which are now gone since ive controlled this with nilstat medication and diet/herbal therapy.
5. Quite bad hormonal problems - in the process of testing
6. night eating syndrome (sleep-wake cycle altered)
7. Malabsorbtion

I am presently on:

High doses of probiotics + Lactoferrin
Astra 8 Immune Tonic - To boost immunity
Intravenous Vitamin C - 30grams a week or every two weeks.
Vitamin B12 Sublingual 1000mcg per day
Antioxidant tonic - milk thistle, ginko biloba, bilberry etc.
Chromium, Manganese due to deficiency. from hair analysis

I now feel pretty ok or a more tolerable state then before. The B12 i think has really helped. Im just wondering since i have been taking Sublingual B12 1000mcg for 3 weeks now will this alter my Urine Methymalonic acid levels?

My doc doesnt want to prescribe me B12 injections until he sees those tests.

Also what tests can i do for malabsorbtion?

I had to start taking it because the longer i didnt the more damage is done to my nerves and i already have muscle weakness and sense of touch reduction, constipation so even more damage couldve been done unless i had taken action.

Anyway this all started in august of last year and was a hell ride i basically went to the ER every second day and i could breathe!!! along with 50 other symptoms i though i would not make it and die but i did and have basically figured out what is going on my own.

Just wanted to share this story with everyone.

Any advice or anything would be good.

Hello MetalMX.

Welcome here. Sorry to hear you are suffering all this...

Hum, all I can say, I had several of the symptoms you have/had like "Reduction in the sense of touch, muscle weakness, bone/joint pains, immune problems" and it turned out to be hypothiroidism, fibromyalgia and ostheoarthritis... How nice eh ? :p

Doc gave me Fluoxac, Eutirox, Lyrica, Celebrex, B complex and Zinc... Nice combo !!! :D

They worked !!! My strong aches, my weakness etc, finally stoped after 5 years with them... :rolleyes:

Im now taking only my B complex and Im feeling good these days.... You mentioned B12 is helping you too, which is nice to read.

About the mercury, perhaps your doc can give you something to help desintoxicating you ??? You could try cranberry capsules... they help desintoxicating our body.

Cheers.
Majo.

Thanks for the reply.

I am pondering over many things and in my case their are many variables.

For example i have low testosterone and hypothyroidism for a while now as well as low DHEA and some other hormones so it could be my body just "snapped" and couldnt take it anymore with these low hormones and arthritic symptoms, muscle weakness etc. are developing.

Also it could be that i have developed some sort of immune deficiency and through this because bacteria use up a lot of Vitamin B12 and synthesise folate that my B12 levels become low and cause illness specifically nerve damage since low B12 will cause nerve damage to the CNS including sensory, autonomic nerves etc.... atributing all my symptoms to this.

And yes mercury is a whole other ball game. Which can literally cause hundreds of symptoms and including that of B12 deficiency and hormone problems themselves. Depleting the bodys glutathione levels then creating too many oxidants etc...

Have you ever got your hormones tested?

If you have hypothyroidism you should be treated with T3/T4 medication. making sure to check you T.S.H, Free T3 and Free T4 levels as well as other hormones Testosterone, Estradiol, DHEA's, Cortisol, ACTH, IGF-1, GH etc...

I have quite a good knowledge base about a lot of things so dont hesitate to ask me as i am sure i can help you in someway and you can help me in another.

Fibromyalgia usually comes about after some viral infection your body cannot handle. Most viruses are caught in the nerves and produce symptoms.

I wouldnt ever take antidepressants personally they made me a lot worse and doctors simply push to treat your symptoms with anti-depressants, painkillers etc. while not having the time to find the cause.

Hey, hope you are doing fine today.

Yeah, my hypothyroidism is being treated with Eutirox (from Merck) which is levotiroxine... I take one of 50 micrograms per day...

My TSH levels were high... that's why...

I think my estradiol levels are low too... but havent been tested.

About my fibro, well, I dont know if it was caused by a virus or not... I thoguht that theory wasnt sure yet, but well, virus have always been very nasty in my body... I dont know what was first: Fibro makes virus worse, or, virus produced my fibro...

I dont care that much in the cause but in the solution, so, yeah, I have been aches free for a while which is good.

My depression has some ups and downs, but Im way better than when I went to see my doc and he gave me my antidepressants... Im back to life thanks to my fluoxetine. Before it I only wanted to die, cried 24 hrs a day and stayed in bed in a very dark room all time... :(

Hope you start feeling better soon.

inflamed small intestine and stomach mucosa= gluten intolerance/Celiac

Visit our Gluten board for the proper tests.
The Gluten file is in the first posts at the top of the page.

Inflamed GI mucosa= malabsorption.

Sounds like there could be an underlying adrenal insufficiency that does not allow your body to normalize so you can upregulate.

I have low Anti-gialdin antibodies. I have been tested for gluten intolerance. I know i am allergic to wheat, dairy and soy among other things beer, coffee which i avoid. I am not allergic to gluten.

Well i have tested negative to addisons disease but i probably have adrenal fatigue. I might possibly have some sort of adrenal insufficency due to the kind of stressful lifestyle i was living (bodybuilding etc.) but im at the moment in the process of testing my hormones through saliva Total testosterone, E2 - Estradiol, DHEA's and Cortisol at 4 points in the day 6am, 12pm, 6pm and 10pm.

Appreciate the input.

How are things now?

I just wanted to tell you how sorry I am for the things your going through in life, you have to wonder why were dealt the deck of cards we are dealt. My prayers go to you. Good luck I hope they find and fix your problems soon.

Hello everyone sorry to not reply for so long.

I have some new news which might shed light on my problems.

I have been having a lot of back problems recently. Felt as though my spine has been curving and i was unable to keep it straight. Had the feeling of a lot of tension in my middle back and it was a lot better when i lied down on my back.

I had an x-ray done:

Their is moderate thoracic kyphosis. There is 15% compression of the anterior parts of T8, T9 and T10 vertebral bodies with only minor disc narrowing. I cannot be sure the age of this compression and pedicles appear normal. There could be osteoporosis.



This would explain my numbness/tingling, leg weakness, bone pains, clicking/cracking of joints and reduction in the sense of touch. From the nerve damage.

Now osteoporosis... i eat so much dairy all my life and this just tells me its not being absorbed. So their is some definite malabsorbtion with me.

I am waiting on a B12 urine methylamalonic acid to see if low B12 is causing this.

I have hashimotos thyroiditis (hypothyroidism) untreated, low testosterone, low DHEA and low GH. add all this to some kind of undiagnosed malabsorbtion and your looking at someone who can get pretty sick.

Although i am feeling a bit better than before which is good.

These past few months i have been using the following which has improved my condition: have been using acupuncture, traditional chinese medicine, Sublingual B12, Vitamin D, Calcium, B Vitamin Complex, transdermal glutathione cream.

L-Glutamine for leaky gut, aloe vera juice, probiotics, and recently digestive enzymes have seemed to help a lot.

From what my chinese doctors tells me my main problems are digestion (aka absorbtion) and kidneys (aka endocrine system).

I will soon be seeing a specialist to test for histadelia (high histamine) and pyroluria (zinc and B6 depletion) these can also cause some of these symptoms. Im awaiting a hair mineral analysis to check my mercury levels now, a hormone saliva test with testosterone, E2, Cortisol at 4 times in the day and DHEA's and a Optimal Nutritional Evaluation.

I have gotten no help from doctors. I have been told i have chronic fatigue syndrome which is not a diagnosis. I have been given proton pump inhibitors which made me feel a lot worse. I realise i have low stomach acid not too much. this would further cause bad absorbtion.


Im just wondering what tests can i do for malabsorbtion? if anyone has any ideas?



I have been feeling very down about the kyphosis the rest of these issues : mercury, absorbtion, hormones can all be treated but this is something that probably cannot be corrected as a side effect of all these other issues and which might cause me serious problems as i get older.

Tests for malabsorption:
1- Clinic can do a Calcium/absorption test - requires a few hours in the lab.
2- http://www.enterolab.com

Thank You.

:wink:

Have you been examined for Lyme disease and/or other Tick-borne diseases, such as Babesiosis, Bartonella, Ehrlichiosis..etc?

Lyme disease can mimic many symptoms of other diseases, not all people develop the bullseye rash or remember a tick bite. The testing is also pretty inaccurate, so it is mostly a clinical diagnosis.

The lab IgeneX in California is said to perform the most sensitive blood tests for Lyme- **

Read through Dr. Burrascano's Lyme Treatment Guidelines for more info on symptoms, etc-

***

celiac disease is not an allergy as in histamine reaction allergy.....and it would tie into hashi's thyroiditis as well.....it would seem it would be worth a shot to try the diet......and about the kyphosis....if it is literal compression fx of the vertebra there are surgical procedures to correct that.....but you NEED to figure out the cause , if at all possible

Hi MetalMX,
You are definately suffering from the bucket systoms of autoimmune disease. I believe you are suffering from heavy metal toxicity and there may be other toxins. You need to find a very good alternative practioner who does natural response muscle testing. The reason I know this is I am going through this myself. I have been struggling with all kinds of symtoms and was diagnosed with Hashimot's 15 years ago. I have also had a pituitary
tumor and had brain surgery in 1990. I have just started seeing a practioner who is treating many people like myself and skilled in muscle response testing. He has identified
that I have extremely high mercury levels and aluminum. These heavy metals appear to be causing many problems with autoimmune disease, MS, Parkinsons,etc. He is in the process of removing these heavy metals and toxins from my body now. He is using very natural means to do this with homeopathics and certain supplements, which he tests your body for as the metals get removed. You need to find either a Natropathic physcian
or Chiroprator who is skilled in muscle testing and nutrition, as well who naturally deals with removing heavy metals. I feel for what you are going through and hope you can find the right person to help you get healthy. Please feel free to email me. I hope this helps.
Regards,
Judi

Hello again everyone, thank you for your kind feedback.

I think it could all boil down to mercury and hashimoto's and malabsorbtion.

As i said all my autoimmune serology testing was negative to rheumatoid arthritis, lupus etc... i only have hashimotos.

Mild chronic gastritis would create malabsorbtion as would mercury to some extent im about to do some specific testing for malabsorbtion soon.

Im awaiting a urine methylamalonic acid test for B12 deficiency.

On my hair analysis i have elevated mercury and recently elevated ganolidium from the god damn MRI contrast and i have read it causes hair loss (which im experiencing) skin lesions and kidney problems.

Im about to see a integrative specialist to address all these problems.

I have been taking loads and loads of supplements for months and years and when i look at my hair analysis i have low levels of most minerals. And recently have had ice cravings pica which is a sign of anemia so im not absorbting anything.

Im taking digestive enzymes constantly to try and improve this, thats about all i can do.

It says the kyphosis could be osteoporitic but i need to do a scan to see my bone mineral density.

The cause is really bad posture during my childhood and hypothyroidism and low hormones (testosterone, DHEA, GH, IGF-1) + hereditary (my sister has it, my great aunt has it and her mother)

I cant being hormone replacement till i excrete the heavy metals.

No i havent been examined for any of this. I could have anything from chronic epstein barr virus, herpes simpex, mononucleosis, lyme god knows.

I used injectable steroids last year which i didnt know the exact contents of, and anything could have been in those bottles and they could have come from anywhere.

Hopefully the B12 will help you. Do you have an Integrated Physician in your area. Look under the Doctor Oz show and see what you can find. This doctor looks at different things.