Undiagnosed Symptoms Community
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Avatar universal

Disease with strange symptoms, anyone recognize or experience the same?

Hi all,

I'm currently very ill and in a poor condition with symptoms that no doctor seem to be able to explain so far. It all started about six months ago after a dinner at a Lebanese restaurant. Below is a timeline of all of my symptoms and how they have progressed into what I have right now.

I have been seen by multiple doctors in 5 different hospitals and have run a dozen of examinations. These include HIV/AIDS, Hepatitis A & C, Sjogren, PET/ CT scan entire body, CT of the abdomen, DNA test for HFE gene, EMG of muscles, multiple gastro's of the stomach and duodenum, multiple ultra sounds abdomen, chest X ray, colonscopy intestines, endoscopic ultrasound of the pancreas and bile ducts, MRI small intestines, MRI brain and multiple regular blood checks. Nothing found so far except for low Vitamin D level, very high calcium and iron and a bit higher ALAT level than usual.

I try to keep my energy level up with a combination of a healthy diet, going out and intake of a bunch of vitamins, supplements and herbs, including:
* Vitamin C, D, A
* Cod liver oil
* Curcumin
* Milk Thistle
* Collagen Hydrolysate
* Zinc
* Probiotics
* Chlorella

Does all this sound familiar to anyone of have any ideas of what this could be?

Mid January - mid February
* Sharp pain attacks in abdomen after eating
* Pain around shoulder blades
* Irregular stools, undigested, black pieces
* Feeling full after a few bites
* Slow passage of food through stomach
* Loss of appetite
* Dizziness
* Several pass outs
* Weight loss: 6kg (original weight 75kg), regular food intake

Mid February - end February
* Nausea
* Pain in thorax and chest

Begin March - mid March
* Nausea
* Intense pain in abdomen
* Bloating feeling in intestines
* Burning pain in hands and feet
* Stiff limbs and hands
* Rigid muscles
* Burning and sharp pain on chest
* Obstipation (avg 5-6 days), blood, fleshy pieces and mucus with stool
* Burning pain in throat
* Pass out
* Warm and cold sensations entire body
* Feeling that my intestines are sacking
* Weight loss: 4kg, 2000-2200 kcal food intake via feeding tube

Mid March – now

Muscles and joints
* High loss of muscle strength and volume, muscles very loose
* Weak, painful and cracking joints, difficulty with walking
* Pain in back and head when lying down or sitting

Eyes, nose, throat, mouth
* Swollen and burning tonsils white spots, warmth seems to worsen this symptom
* Lips constantly peeling, yellow crusts, sticky, swollen, burning pain, water seems to worsen the peeling
* Fissure in middle of tongue, enlarged tongue, burning pain, sticky tongue, white coating, puffy tongue with teeth marks along the side
* Dark blue veins clearly visible under tongue and under lips
* Swollen uvala
* Swollen inner cheeks, white patches
* Receding gums, frequently bleeding, frequently swollen
* Thick saliva with strings
* Burning pain in oral cavity
* Burning pain in nose
* Burning pain in ears
* Burning pain in eyes, noticeable red veins in eyes

Skin, hair and nails
* Body skin constantly peeling, water seems to worsen this symptom
* Skin has become very thin and fragile, sticky after water exposure
* Hair loss, thinning and fragile hair
* Receding cuticles, water seems to worsen this symptom

* Slow healing wounds
* Sleeplessness, not slept for months
* Low energy/ fatigue
* Lowered body temperature (avg 35)
* Lowered blood pressure (avg 100/60) and heart rate (avg 55-60)
* Dizzy when standing up
* Mushy stools, regularly diarrhea, sometimes food not well digested
* High urine production
* White foam in urine
* Weight loss: 3kg, normal food intake, about 2400 kcal
10 Responses
1756321 tn?1547095325
Parathyroid.com lists the 7 causes of high blood calcium in more detail.

1.  Hyperparathyroidism (99.5% of cases)
2.  Cancer (Less than 0.01% of cases)
3.  Sarcoidosis
4.  Excess Vitamin D Intake
5.  Certain Drugs
6.  Milk-Alkali Syndrome
7.  Paget's Disease of the Bone

Hyperparathyroidism is a tumour on one or more of the parathyroid glands (there are four tiny glands the size of a grain of rice, located in the neck, that control the body's calcium levels).  Parathyroid tumours cause low Vitamin D. Surgery is the only way to treat hyperparathyroidism.

Excerpt from UW Health - Hyperparathyroidism...

"Individuals with hyperparathyroidism may experience no symptoms, or may experience the following:

Muscle weakness
Bone pain
Joint pain
Difficulty concentrating
Difficulty sleeping
Memory problems
Feeling depressed
Feeling anxious
Abdominal pain
Nausea or vomiting
Frequent urination
Nighttime urination
Kidney stones
Thinning hair

Not sure about this. One of the main symptoms of Hyperparathyroidism is high blood pressure: http://www.parathyroid.com/parathyroid-symptoms.htm
Mine dropped since I started to have this disease. Yesterday it even fell to 87/55. No reason I'm dizzy all the time..
363281 tn?1590104173
Hello~you could be suffering from Candida, this is a yeast infection in the gut, it can cause many symptoms, many are similar to what you are describing. Try eliminating all yeast, wheat, sugar, gluten and juices. Eat a low carb diet. I also would take a supplement called "Caprystatin" This is an anit-fungal agent derived from the coconut. ask the doctor to do a stool sample, this is where the yeast infection likes to show up for some reason. There is a book by Dr Cooke, called "The Yeast Connection" I highly suggest obtaining a copy and reading it, it has a wealth of info and many ideas as to how to get rid of it, it takes time, but, it can be done.
I did a stool test and it indeed showed that I suffer from Candida, but the results also showed that it's not an overgrowth, so I'm wondering if this could be explaining all of my symptoms. Also, my calprotectin level was higher than normal: 218 µg. I'm currently still under diagnosis, so I hope to find out more soon...
Avatar universal
Sounds a lot like Nutcracker Syndrome (Left Renal Vein Compression and another condition that can occur as part of the Nutcracker is SMA Syndrome (Superior Mesenteric Artery Compression Syndrome). It's where the duedenum gets compressed between 2 arteries, the aorta and superior mesenteric artery. It causes blockage of the small intestine and undigested food in the stool and many of the other problems that you're having. Nutcracker Syndrome is a known cause of Chronic Fatigue Syndrome and the many problems that it can cause.

I have a friend that has both of these conditions and it would explain every problem that you're having. Unfortunately most doctors have never heard of these conditions but Vascular Surgeons are the kind of doctors that deal with these conditions.
Ow wow, I have been diagnosed with SMA syndrome but second opinion disconfirmed it... so it's left untreated and the doctors didn't have a look at it again. Well, except for an assistant professor at Yale University who looked at my images, but he told me that that the compression alone couldn't explain all my symptoms. What could be the cause of the compression? The reason I'm asking it is that before all of this happened I was entirely healthy and suddenly after a dinner it hit me and got severe within two weeks. Also, I've read that people who are very thin usually have this syndrome. I was 167.2 lbs, for my length 5,6ft that's OK. Has your friend been treated and if so where did he get the treatment if I may ask?
Avatar universal
Where do you live? There's a German doctor that is considered one of the best in the world at diagnosing and treating SMA and NCS as well as another one that I have called May-Thurner Syndrome. His name is Prof Thomas Scholbach. He is pioneering new ways to treat these rare Vascular Compression Conditions. He wrote a great article if you can find it.
Vascular Compression Syndromes by Prof Thomas Scholbach

My friend has had phone consultations with him. She actually was told by one doctor that these conditions don't exist! So there is very little that is known about SMA and all the problems that it can potentially cause. I would get a third opinion or go back to your original doctor that diagnosed you because what you're describing is exactly the problems SMA Syndrome can cause as well as compression of the Left Renal Vein (Nutcracker Syndrome). I think there are only 2 doctors in the US that perform surgery for this condition. That's why I mentioned Prof Scholbach if you possibly live in Europe that might be even better. I'll send you a private message with my friends info. She has an SMA support group on Facebook.
Thank you very much for the info. I live in the Netherlands close the border with Germany. I will definitely contact this doctor and see if I can get a consult with him.
Avatar universal
Hi, It's been a while since I posted my last message. A lot has cleared up in the meanwhile, however, I (and the doctors) still have a lot of questions.

First of all, I visited Prof Scholbach two weeks ago who diagnosed me with the following problems:
* Compression of the coeliac plexus by the overriding arcuate ligament
* Dysfunction of the descending part of the duodenum
* Nutcracker phenomenon of the left renal vein with in sufficient collaterals to what is called the Pelvic congestion

Also, I went to the Eliava Institute in Tbilisi, Georgia for a bacteriological check-up. They found the following issues:
* Chronic throat infection
* Chronic prostatitis
* Chronic gastroenteritis
* Lactose intolerance
* Dysfunction of the gastric valves

I received a treatment course with phages, which is an alternative antibiotics, but it had a slight effect and only for a short period. The infections are recurring and in some cases, like the fungus infection on my toe nails, spreading and getting out of hand. It seems that my body is to weak to fight of these infections on its own.

The doctors don't know if all of my problems are related and if they are the result of something else that I might have or not. Anyone any ideas on what could possibly be causing my symptoms and on how to continue?
Ok, you really need to go back to the basics.
You must rule out low gastric acid, which ironically is remains left  outside
most medical investigations, yet, it could be the most important factor in your particular case!
Undigested foods can cause ulcers, damage intestinal lining, increase presence of harmful pathogens including Candida, higher risk for recurring infections, nutritional and vitamin  deficiencies( ie: B12 absorption  is 100% dependent on gastric acid)

Low gastric acid could lead to number of chronic conditions and imbalances
affecting any part of the body!

So please set aside any complex diagnostic investigation and make sure
you cover all the fundamentals.
Beware of the gaps, holes and flawed
testing methods of the conventional
medical system.

Best wishes,
Hi Niko,

Thanks for your comment!

I did have a lot of proton pump inhibitors between January and March to treat my Helicobacter pylori infection. However, shouldn't the acid production return to normal levels after stopping with the medicine?
What else can be done to increase gastric acid to normal levels?
Your low blood pressure, leads to suspect  low water absorption, due to possible lower sodium levels, which  consequently would lead to diminished gastric acid production.
When PPIs are prescribed (likely erroneously) rarely, if ever, do the doctors check gastric acid levels!
So you could have ended up with a condition known as achlorhydria!

Increase your salt intake (preferably
raw sea salt or pink himalayan) and your fiber intake.

Try transdermal magesium
( magnesium chloride flakes 50/50 with warm water solution, spray onto entire body, leave on for 30' and then shower)
Daily for a couple weeks and then every other day.

The chloride part of the flakes, when the magnesium chloride gets broken down will be used for the production of gastric acid.

Take ample water with some lemon juice in it throughout the day (1 hour away from meals).

Keep your diet slightly alkaline (see various lists of alkalizing foods online)
and consider some good quality probiotics as well.

At first you may want to take some betaine HCL and see how that works for you in the short term, while your acid production gets normalized again.

I would suggest a good mineral supplement, since low gastric acid levels cause very low absorption of alkalizing minerals, necessary for the healthy functioning of the body.
I use bone broth from slow- boiled pastured (grass fed-beef bones) for 24-48 hours to get additional minerals in my diet.

Best wishes,
Thanks again Niko!! I'll give this a try for a couple of weeks and hope it will work.
Avatar universal
I'm glad you made it to see Prof Scholbach! Did he recommend any kind of treatment for all your compression syndromes?
Me too :)

Yes, he did.

To treat the nutcracker syndrome he advised to start with aspirin therapy, which should improve the perfusion of the left renal vein.

I was told by the prof that the problem with my duodenum might be caused either by a virus or compression of the coeliac plexus. He also told me that if it's a virus then it's most likely the Borna virus... so we ran a test for that and the results showed that I have a persistent infection... which I think it's strange since this virus is most seen in horses and other animals. How would I have got this? I rarely come near to animals, hehe. In humans it's very rare and furthermore is linked to mental illness and does not lead to the issues I have. Borna virus can possibly be treated with Amantadine.

The compression of the coeliac plexus can only be solved trough surgery.

Lately, I have been experiencing even more muscle wasting / muscles becoming very loose and increasing skin thinning, despite movement and a high calorie food intake. Does your friend also experience this issue?
Avatar universal
Yes my friend was also diagnosed with Ehlers Danlos Syndrome which sounds similar to what you are describing. Very likely caused by the Nutcracker Syndrome.
I read that EDS can only be inherited. Now, I don't know anyone in my family who has this syndrome. Spontaneous mutation is possible though, but signs and symptoms should be visible in childhood already, and I didn't have any muscle and or skin issues before this all happened.

Which type of EDS does your friend have? I hope not the vascular one?
Avatar universal
From what I understand she was diagnosed with Hypermobile EDS which has no known genetic cause. She is waiting to get tested for Vascular EDS since she has multiple Vascular Compressions.
Ohh wow, I really feel sorry for your friend, hope there will be some sort of relief one day! Would it be possible to bring me in touch with her?
Avatar universal
I will send you a private message with her contact info.
Avatar universal
google "top ten food sensitivities" and stop eating all of them...after becoming sensitive to wheat, i realize the food we eat is critically important and Doctors "practice" medicine...In about 100 years they will know and fix things fast. We are not there yet.
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