Mystery illness. Please help me

[skyfall]

Hi all,

I wrote on here a while back about some very strange symptoms that came on when i found out i was pregnant. Light sensitivity, and a drunk/high feeling that would come and go. I then miscarried, and for 3 weeks felt fine. Then one day, i woke up with the drunk feeling constantly, and the light sensitivity, and have been this way for 5 months straight, with no break in symptoms. I saw a gastro in February who found yeast overgrowth in my stool. I thought nothing of it, i didn't even know what it was, until i started researching. He gave me nystatin, and my symptoms never changed. Started researching yeast, and was certain it was causing my issues. I went on a strict diet, and found a doctor who deals with these types of issues seems i read a lot about regular doctors who don't believe in it. She put me on nystatin/diflucan for a month, and i had no relief in symptoms. Things i have tested for:

Thyroid-Fine
Diabetes-Negative
General blood testing- Ok (But few neutrophils that fight bacteria 2 points out of range), overall white blood count within range
CT head scan-Normal
Food allergy testing shows no allergies
Probiotics tried (None make any difference)
Doctor has tried (Metronidazole as it can help fight certain bacteria in the body)- Makes symptoms 10x worse
Nystatin and diflucan make symptoms feel 10x worse
GP a while ago said i had a sinus infection (I don't think she knew what was wrong really, she just went off me saying i had some post nasal drip and my nose runs a bit), so she gave me ceftin- This also made my symptoms feel 10x worse.

So i am not sure if any antibiotic is making me feel worse, or these certain ones irritate whatever i have going on. So i just did the CDSA stool analysis that i heard really helps show up yeast, and what is resistant/sensitive to it. I just got the results, and it shows no yeast present in my stool, and this test took 3 different samples from different days. Now i am completely disheartened because i have no idea why i feel this way, and it is really scaring me. Does anyone know other things that can cause these issues? I will give a quick run down of symptoms.

Constant drunk/high feeling
Light sensitivity (Not so bad outside in natural light, much worse with indoor lighting) It feels like when you first wake up and turn a lamp on, but my eyes never adjust to the light.
Undigested food in stools
Hard pellet stools
Carbs/Sugar/Caffeine make symptoms worse
Random itching over skin but with no rash (Sometimes mild hives are present)
Heavy feeling eyes/Sometimes feel very sleepy after food
Feel at best first thing in the morning
Sneezing sometimes/runny nose
Post nasal drip sometimes
Itchy anus/inside ears/nose
Slight runny nose sometimes
Had chronic constipation before this for 2 months
Had root canal-Had tooth removed, made no difference

I am at my wits end, and i worry i have something really rare and life threatening.

 

[Aileen]

It sure sounds like an infection of some kind. Did they test for parasites? Which probiotics did you try? Have you tried Saccharomyces boulardii?

The constant drunk feeling sounds like your body is not breaking down certain chemicals in the gut.

 

[SOC]

This is a forum for people with the serious neuroimmune illness ME/CFS. If you are wondering if you have ME/CFS, you can read about the characteristics of the illness in the Myalgic Encephalomyelitis: International Consensus Criteria. You can initially skip the introductory material, go about a quarter down the page and start reading at Table 1.

In summary, you need to have post-exertional neuro-immune exhaustion, multiple neurological impairments, multiple immune, gastro-intestinal and genitourinary impairments, and energy production/transportation impairments.

If, after reading the ICC, you think you have ME/CFS, welcome to the club none of us wants to belong to. You will find lots of information here about how to find one of the few doctors who knows about the disease and can help you move forward.

 

[skyfall]

Yeah parasites were also tested for, and it was negative. I can post my results from the test, but not sure if it will mean much to anyone. I have been on innate probiotics, and then my doc put me on vsl #3 extra strength. I also have these weird sensations by my temples sometimes. Sometimes a stabbing pain, and my eyes feel very heavy.

 

[golden]

Very sorry for your loss.

I do hope you find the answers to your health problems swiftly.

Best,
Golden

 

[PDXhausted]

Have they ruled out primary biliary cirrhosis? I think pregnancy can sometimes trigger autoimmune diseases.

 

[Sushi]

@skyfall

Have you consulted a very good internist? Your symptoms are so diverse that you might need some really good testing to find out what is causing them. However, they don't seem to really fit the ME/CFS diagnostic criteria.

I hope you can find a really good doctor who is willing to really look into your symptoms.

Best wishes,
Sushi

 

[taniaaust1]

Your symptoms probably could be being caused by many things. Some things which come to my mind on reading your post

- issues to molds (but you said allergy testing didnt show up anything so maybe that rules that out)

GP a while ago said i had a sinus infection (I don't think she knew what was wrong really, she just went off me saying i had some post nasal drip and my nose runs a bit),

25% of people have nasal staph but not all nasal staph is the same eg many with ME/CFS get a toxin causing kind of staph up their nose. The symptoms of this are post nasal drip and often is wrongly diagnosed as a sinus infection. Ask your doctor for a nasal swab to see if you have staph (if you do, the lab should also test which antibiotics arent immune to it so you can take a suitable one).
...............

Carbs/Sugar/Caffeine make symptoms worse

Seeing you have isssues to carbs and sugar, you need a 2hr Glucose Tollerance test with the insulin levels done. Thou you arent diabetic, there is a very good chance with your issues that you have hyperinsulinemia (insulin resistance. This my specialist calls the paradoras box of illnesses as it can cause so many different symptoms!! Most doctors do not realise just how many problems this problem can cause some of us.

Note...Many blood places transport this wrong which screws up the test, giving a false negative result (insulin can degrade during transport to a lab).. get your doctor to write on the blood test form for this test that insulin assays must be centrifuged and transported on dry ice to the lab to make sure your sample gets there in good condition http://www.agale.com.au/assay2.htm. (my specialist is a leader in this field, he spends a lot of time trying to educate others on this).

He's got a list of things connected to insulin issues (prediabetes state before the sugar starts to rise) here http://www.agale.com.au/PANDORA.htm (as you can see there can also be a connection to caffeine with this. " ….Caffeine can decrease insulin sensitivity* in healthy humans….*("decrease insulin sensitivity" = increases insulin resistance )"

Anyway.. I strongly suggest to get those two tests done to rule out these things causing you issues (or at least some of them). I'd love to hear back how your results go with these things.

best wishes

 

[taniaaust1]

and also I suggest for you to be tested to see if you have a double copy of the MTHFR mutation. This is in 9-18% of the population (depending on what country a person is in) and is a common cause of miscarriages. if you have it and know, you can do things to prevent a miscarriage from it next time (it can also cause spinal issues in babies and other issues, if you have it and arent taking things for it). My daughter is disabled cause i have it with something which would of been preventable had I'd known I had it before I got pregant.

http://www.pregnancy-info.net/mthfr.html (I dont know why sites like this say its rare as I dont think according to the statistics of it, its rare at all).

 

[Gingergrrl]

@skyfall, I am sorry for your loss as well. While I do not have much to add medically I just wanted to give you hope not to give up trying to find the cause of your symptoms.

I got mono/EBV about three months before I got engaged and had I not gotten CFS and become so ill, we were going to pursue fertility treatments so I could get pregnant. I know this is a very personal subject but did you do any fertility hormones that could have made you ill?