QUESTION:
Mystery illness! Can you diagnose it? (It’s stumping doctors)?
Hello all; I realize that you are not all doctors, but doctors have come up empty, so I thought I’d pick your brains.

This is a mystery illness which has probably been present entire life, but which only started affecting patient strongly enough to seek an answer 3 or 4 years ago. Specialists, testing, ultrasounds, doing all kinds of testing, et cetera, and nobody can solve it.

28 year old female; no children, married, weight normal

Symptoms:

+low-level headache which only rarely goes away (made better by avoiding the 8 common allergens)
+Body ache like the flu
+Muscle soreness without exercising or unusual activity
+Chronic fatigue – was extreme fatigue before, but treatment for systemic yeast infection and avoiding 8 allergens helped recover to about 30% of normal energy
+Sudden, overwhelming exhaustion requiring patient to lie down or fall down. MUST lay head down. Typically lasts 4 hours to 3 days. Has to sleep it off. Comes on without warning and with no discernible cause
+Eyesight varies daily, from very bad to pretty good (had LASIC; vision is 20/12, or was before this started)
+Swollen and inflamed ear canals, sinus cavities, nasal passages, throat, digestive system – helped somewhat by ibuprofen, helped more by benadryl, helped most (but not gone) by nasal decongestive medication – phenyl…something
+Mild “Allergic” reactions to various medications, and then no reaction next time – rash and itching, mostly,
+diarrhea, abdominal pain, gas, brain fog, exhaustion caused by 8 allergens, soda, potatoes, etc (diagnosed with IBS at 14…but I think it’s connected)
+acidic stomach; gas and requiring tums with every meal
+Feeling of burning and/or fullness in bladder, urges to go often (not a UTI; diagnosed as interstitial systitis two years ago; extreme inflammation seen in examination – burning sensation disappears with benadryl)
+Vague, dull pain in lower back, both sides, not always noticeable (kidney and liver function normal)
+Difficulty swallowing and feeling of throat being pressed on at thyroid (thyroid ultrasound normal; not oversized)
+Chronic, mild pain in lymph nodes on sides of throat, comes and goes
+One incident of weight gain; gained 30 lbs mostly in abdomen; went from 135-155 in 5 months; after treatment for systemic yeast infection and change in diet to avoid 8 allergens, weight dropped back off without effort
+Previously diagnosed as Depression with Anxiety, now believed to be bipolar disorder
+Insomnia
+Slow healing; a pinprick is still visible a month later – improved somewhat after treatment for systemic yeast infection – before illness, typical healing was twice or three times average
+Occasional, unexplained but fierce itching on palms, wrist, soles of feet; no visible change in skin
+ Sweating/very hot episodes much like hot flashes lasting from 10 minutes to 2 hours
+Typically very cold even in warm weather
+ “bones” hurt sometimes (Is that possible?)
+B12 deficiency treated with shots; better after treatment for systemic yeast infection
+Chronic Anemia – vegetarian but on iron supplements. It’s a little low but can dip extremely low (to a 6)
+Lightheadedness
+protein in urine
+nausea/poor appetite
+Lifelong fast resting pulse – 102
+Very low blood pressure – down to 50/80
+Benadryl causes wakefulness
+hair loss

Diagnoses which have been ruled out:
++Underactive/overactive thyroid. T3 and T4 regular, no thyroid antibodies present, ultrasound of thyroid shows no abnormalities
++ultrasound of kidneys normal, functional
+UTI – only one actual occurance of UTI ever verified; all other tests negative
+Treated for Systemic yeast infection – 3 courses of three day diflucan
+B12 deficiency
+diabetes
+HIV/Syphillis
+Detailed Allergy panel negative; mold allergy panel negative
+Pregnancy

Test results:

CBC
WBC 7.5
RBC 3.46
HGB 10.4
HCT 31%
PLT 305
MCV 30.1
MCHC 33.6
GRAN% 48.9%
GRAN# 3.6
LY% 42.1%
LY# 3.1
MO% 7.9%
EO% .9%
EO# .1
BA% 0.3
BA# 0
RDW 13%

Comprehensive Metabolic Panel
NA 138
K 4
CL 106
CO2 26
ALKP 58
AST/GOT 12
T.BILI .4
CA 9.3
CREAT .679
BUN 10
GLU 82
ALB 4.2
T. PROT 6.6
GFR >60mL/MIN/1.73MS

TSH, Serum
TSH 2.08

HCG, Qualitative
Negative

RPR / VDRL
RPR nonreactive

B12 LEVEL 838

Folate 24.7

Ideas, anyone?
FAMILY HISTORY
Heart problems (hear attack/bypass)
Paranoid Schizophrenia
Bipolar with Delusions, Grandiosity
Anxiety
Depression
Probably much more; father deceased at 44 from heart attack; definitely suffering from some mental issue; father’s brother died around same age, definitely delusional.
Autism
Parkinson’s
Extremely rapid healing from injury/illness (3x normal)
Pain felt more mildly than appropriate
Sleep Apnea
Asthma
Rheumatoid Arthritis
Excema

MEDICATIONS
Mirena
Lamictal 50mg
iron supplements
benadryl as needed for symptoms
ibuprofen as needed
Allegra for inflammation
Sudafed for congestion/swelling
I answered the age already and others; female menses is regular but heavy and painful, much lighter with Mirena, yes, sexually active with a single partner.

I forgot to mention that there is wrist and arm pain like carpal tunnel, and that mother and brother seemed to have some of the same symptoms at the same age
Diet is EXTREMELY healthy; fresh fruits and vegetables, good protein, no candy, no sugar, no soda, no smoking, no alcohol.

If it is your belief that this is an imaginary condition, kindly save your time and your typing; replying that it’s imaginary won’t help either one of us.
Dear Gabriel; I realize that this is your belief and I don’t want to disrespect it, but I cannot believe you have ever suffered illness or known anyone who has. You may be blessed with good health, but not all people are. Relatives don’t repeatedly die in their 40s if there isn’t something wrong. They don’t lose touch with reality and hallucinate and they don’t gain and lose weight without any changes in diet or habits. This is not caused by poor diet or worrying. Diet was very healthy, patient was very active, exercised, led a full and happy life, and felt very healthy and blessed indeed, was not sitting home worrying about illness or feeling sorry for self.
@Merry

Yes; I was actually tested for allergies (not potatoes or soda; I just know they make me sick) and I show none at all. I went to an allergist and they scratched my back and everything. They made the point that I can be intolerant without being allergic, though, which made me more open to the idea of cutting those foods out of my diet. Drinking soda and eating potatoes WILL make me sick even though I don’t show allergic, so I avoid them.

My diet was, for about 3 months, completely free of all allergens. Everything from scratch, no peanuts, no fish, no dairy, eggs, no anything. I am extremely attentive, so I do know that for at least that time, I was completely free of all allergens. Yes! I ate 5 things only. I am a vegetarian, so I had kidney beans instead of turkey.

Digestive trouble and mental fog largely disappeared with that diet, and weight dropped off. After 3 months free of problems, and with much better, but still very low, energy, I thought that was long
enough to rule it out as a primary cause and slowly started reintroducing some foods (I no longer avoid corn oil, but I still don’t eat corn; I began eating a healthy, gluten-free cereal blend because my energy levels were so low) again. I do not currently react to the reintroduced foods, but I am eating very small amounts, and do not intend to try sugar, soda, wheat flower, etc. again.

I checked the numbers on my thyroid myself (having read about how they get misdiagnosed) and they were perfect; I do not have the test handy but I will check to see if it’s FREE T4/T3 when I can get to them. I really appreciate this point; I was astounded when it wasn’t my thyroid as I have family history (oops, forgot to mention that) and every single symptom matches. I hope that’s all it is!

My B12 levels *were* very low before, but now they are good at 800; I have stopped losing it so quickly since the diflucan. Yeast consumes B12 so I imagine that was why it had been so low. I did
not get a test on the level before the shots, so I can’t say what they were, only that when I tested after that they were progressively higher; before diflucan, B12 would make me feel better for 2-3 days, then 4-5 days, then a week, etc., but after treatment it steadily remained at high levels.

My diet is free of grains and sugar since the yeast diagnosis; I felt it was better to be safe than sorry and so I have continued to avoid those things.

My body temperature is always and has always been low; that’s interesting. As a child I had all the symptoms of hyperthyroidism, and now I have all the signs of hypothyroidism. Just not the diagnosis.

Birth control….well it’s an IUD, not a pill, but….I *am* married, and he *does* pay all the bills since I’m unable to work and…..well, I will get it out if I absolutely have to.

Allergy pills are new; I started them when I kept not breathing at night. It was really terrifying and they help keep the swelling down so that I
breathe, and relieve the very unbearable inflammation. I do try to use them as-needed, though. I will have to think about my diet again if that could be the culprit so that I don’t need the pills.

Thank you so much for taking the time to read it and reply; this has just been a nightmare and it’s awful not finding a reason. If you will allow anonymous messaging, I will tell you if the thyroid pans out.

Did the yeast still make you tired for the year? Was it gradually better? Because I am doing better, just not normal.

• ANSWER:
  First, is your diet 100% free of allergens? Eating any tiny bit of an allergen can cause all of these symptoms.

  Second, I didn’t see results of your T3, T4, and antibodies thyroid tests? Some doctors aren’t aggressive enough about treating hypothyroidism. I had a normal TSH and until they ran FREE T3 and FREE T4, not just T3 and T4, they never saw how sick I actually was. High pulse + low BP is very suggestive of low thyroid. As is hair loss.

  Third, your B12 doesn’t look low at all. You didn’t list the ranges (which you need to because everything varies by lab), but I’ve never heard of any lab tagging an 800 B12 as low.

  Forth, Diflucan can be helpful for systemic yeast, but if you read message boards, it rarely cures it in the long run. Nystatin and a sugar-free, low carb, grain-free diet are the best solution. And it could just be ongoing Candida that is causing all these things.

  Bottom line: You have a lot of symptoms, but your blood work looks pretty good. You probably are not careful enough with your diet. I have profound food allergies and when I eat perfectly, I feel perfect; when I deviate the slightest bit, I can swell up and be in pain in an hour and it can last for weeks. Unfortunately, it’s not a cool mystery diagnosis which can be cured with a pill. You just have to make all your food from scratch and get all sugars, starches, dairies, molds, grains out of your life.

  I had symptoms similar to yours, but worse in the sense I was vomiting blood several times daily and had leaky heart valves. I went to a medical nutritionist who ran her own tests and I literally lived on six things for a year (turkey, potatoes, avocado oil, plain cashews, Smart Water, sea salt). At the end of that year, my blood work was perfect, I never threw up, and all my pain was gone.

  I’m really questioning whether you had actual allergy testing done. You should do that. Allergy tests don’t test for “soda” and potatoes are incredibly low on the allergy list relative to wheat, corn, dairy, soy, salicylic acids, etc…

  And birth control pills are awful for someone with your problems. As are OTC allergy meds. They add to your overall toxicity big time and you should probably wean off those ASAP.

  Treat the yeast (with perfect diet and Nystatin, NOT more Diflucan), eat perfectly, and make absolute sure your thyroid tests are all well within normal range–not borderline. If you take your temp under your arm every morning before you get out of bed and it’s under 98, you can bet you’d feel better with thyroid medication.

  Good luck.

  EDIT ^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^

  You most likely have hypothyroidism. If you have a family history with your symptoms, you need to be medicated. Have an antibodies test done if you haven’t. It will show if you have Hashimoto’s Disease (hereditary) which can skew the other tests into looking normal, but can be diagnosed if you have high antibodies.

  I felt PERFECT after a year because I let my body rest and didn’t eat anything I was allergic to, anything hard to digest, anything spicy, etc… I mean, it was brutal.

  IUDs are fine as long as they are the copper non-hormone ones. They don’t tax your body at all.

  I will never eat grains again…they’re inflammatory, bad for your health (everyone), and have no real nutritional value you can’t get in other places. And once you have candida, if you aren’t pretty close to perfect, it can come back with fury any time. Just keep away from yeast, grains, sugars, molds, etc…no cheese or wine!

  A low body temp is how doctors use to diagnose hypothyroidism before blood tests. You have every sign and symptom and some don’t cross over into other ailments. Go to an alternative doctor (you can look up doctors of osteopathy on Google for a list in your area) and ask for a trial of Armour (NOT JUST SYNTHROID). They’ll start with a small dose, and I’m telling you, you sound enough like me five years ago, that I’d willing to bet you fifty bucks it’d change your life.

  One more thing you might consider eliminating is salicylic acid. It’s in many fruits, green peppers, peppermint, store tooth pastes, etc. A lot of people are developing allergies to SA and many times, feel better when they are removed from the diet. Here’s a helpful list: http://salicylateintolerance.blogspot.com/2007/12/simple-salicylate-food-list.html

  my email is merrymistletoes@ymail.com. Please keep me updated! You’re like my health woes twin