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I DESPERATELY need HELP! Sick for over 6 months
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I DESPERATELY need HELP! Sick for over 6 months

* then in feb this year I started to feel like I had had the flu for a month, I had EXTREME fatigue. I was convinced I just was run down but I couldn't function.

* early march, it was the second day of my period and I was in unusually severe pain, severe nausea( my periods were much improved the last year or so). I visited my doc after passing a blood clot the size of a golf ball. My period was extremely heavy also. He gave me painkillers and told me to visit hospital if things got worse.

* the next night I had a chocolate coated ice-cream and literally as I was eating it all I could taste was metal. I had a friend try it and they said it was fine. 5 seconds later I started vomiting for about an hour non stop. I got severe pain in the same location on my left side and felt like it was the worst pain of my entire life. I was rushed to hospital and given morphine. They did blood tests and found a white cell count of 21. My kidney function was below 60 so they gave me antibiotics for a kidney infection.  

* for a month after discharge my symptoms got increasingly worse. The antibiotics did not help. I got very high fevers over 38, my blood was measured at the doc to be 160 on top. My heart palpitations were extreme and I would wake up drenched in sweat with severe nausea, shaking badly and wanting to vomit. 

* My gp tried 5 different antibiotics as they did not know what was making me sick, and a second blood test showed normal kidney function (week after visiting)around this time I  I  went back on the gluten in April as the only food I could tolerate was bread and fruit ice blocks. my fevers went away after a course of flagyl (5th antibiotic they tried) - keflex and amoxicillin did nothing.

* I also did an ultrasound of both the reproductive and general abdomen. They found a 'slightly contracted' gallbladder which was of no concern to my doc. They also found two 1cm cysts on my liver, a 1cm cyst on my left kidney. 

* since then I've done multiple ct scans and ultrasounds with no findings. a ct in June showed the remnants of a small stone and I passed some stone crystals and blood in a urine test.

* I saw a gastro who gave me an endoscopy and colonoscopy and found only blastocystis a common parasite that doesn't usually cause such severe problems. I was treated with 5 weeks worth of antibiotics and the parasite tests came back negative. It has been more than 3months since my treatment and the nausea isn't gone. 

* I've had many blood tests - all have been Normal (I've had at least 7) the only findings were slightly low iron (I've always been low), vitamin d of only 12 and low zinc levels. My thyroid results the last 4 tests have showed a tsh of 40, 35, 0.14 and currently returned to 30. I have seen an endocrinologist who doesn't believe this is significant ESP. Since at the onset of my 'mystery illness' my thyroid results were all normal.

* heart ultrasound - trivial mitral valve regurgitation

* since this incident I have been extremely sick, here is a summary of my symptoms in order of occurrence, up to fatigue are my everyday symptoms, the rest come and go:

*  severe consistent nausea - especially with bowel movements
* severe heart palpitations & flutter
* stabbing pain on left side and sore rib cage ( I can't sleep on it)
* chest pain
* neck pain
*sore throat 
*dizziness
* constant urge to poo but will only do small amounts sometimes 5 times a day (narrow stools) other days I will do 5 normal amounts but with semi soft stools
* fatigue
* mood swings
* bouts of insomnia that come and go
* entire body aches 
* always feeling hot
* fevers between 37.5 and 38 that come and go for 2 or 4 days and then go away. 
* chills
* sore lymph glands
* sore breasts 
* sensation of chest on fire with nausea
* headaches 
* 15 kilo weight loss
* breathlessness with exertion
* stomach cramps
* slight drooping of right lip and numbness (sometimes)
*tickling sensation in throat
I since have had an ANA test come up positive at 80 titres speckled.
Please what could it be?
12 Comments Post a Comment
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Avatar_f_tn
I am so sorry to hear about all of this you are experiencing.  I think this looks complicated and you may need some direction to someone/someplace who can help. I did notice that your D is deficient. It can cause lots of baaaad problems but probably not all you are seeing.

I would recommend increasing your vitamin D3 today. It is cheap and easy to get over the counter. Costo, Walmart etc. Costo has a 5,000 pill. I take two a day. For more info about D3 deficiency go to vitamindcoundil.org. They recommend your blood test be between 50 and 70mgl. 12 is way too low! It takes a while to get up to a 50 or 70mgl. Maybe months.  Do a blood test 2 times a year. The D will help with the fatigue,bone pain,mood swings, aches, sore breasts and periods. The immune system needs enough D to make the rest of the cells in the immune system work.
While we are still in summer, try a couple of "sunbaths" a week. No sunscreen just 10 to 15 min. outside in the sun, less if you are fair skinned. Expose your face, arms and legs. Your skin will make 20,000
of vitamin D in about that time. Don't shower for at least an hour. This only works in the mid-part of the day. 10-2. Don't burn. The ideas is for your skin to naturally make D, not get skin cancer. Do the supplements also. No matter what your final diagnosis is having a proper level of D3 can only help the rest of your symptoms.

Second suggestion, go to the IDF immune deficiency foundation. There are 150 different immune deficiencies they know of. Their web-site is  very helpful and so are the people there. Go to www.primaryimmune.org  They can recommend an immunologist in your area, and it sounds like you need someone who specializes in the immune system. They also can suggest diagnostic testing for your doc or immunologist that can prove or disprove a diagnosis.
No matter what your final diagnosis is, I hope that having some places/ideas to start will be helpful.

Blessing on you and finding the answers.
elbamom
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Avatar_n_tn
Hi elbamom,

I am taking vitamin d but I can't take more than1 a day or i stay awake all night. But I think sunbathing once a day is a good idea.

Your recommendations about the immune deficiency foundation is great, thank you so much!

Lena
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Avatar_f_tn
What kind of vitamin D are you taking? A tablet or a liquid pill? For me the liquid works better. I take it with food, at breakfast and dinner. If a certain brand is keeping you up check the bottle and see if there is anything else in the pill beside the D3. Some of the brands have other things that may be giving you problems. Health food stores also carry the "pure" D instead of other brands.
Another thought, has your thyroid been checked? some of your issues sound like endocrine problems. I take synthroid too, had to go to an endocrinologist for this. I found that my medical problems mostly needed a specialist in all the areas, not a PCP. I like my PCP but really they can't specialize in everything, thus the specialist. The downside of the specialist is of course they only know their own area. Keep good records of every doc visit and keep good notes on what helps you and what doesn't.
I hope the IDF is able to help you find some answers.

Good luck
elbamom
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Oops, had another idea after I sent the post. The gut is part of the immune system. Do you take any pro-biotics? The GI doc. recommended we take VSL#3 it is available over the counter at Costco in the pharmacy. It is refrigerated but is wonderful! I used to get yeast infections all the time, every time I had to take an antibiotic. I took the VSL#3 for a couple of months and now when ever I need an antibiotic and for the following month. No more yeast infections, and my gut works better too.  We need the good bacteria to make our GI system function correctly.
Good luck
elbamom
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Thanks elbamom, I was taking a broad spectrum probiotic for 3 months and found it had no effect whatsoever, if anything made me feel worse. Although for some bizarre reason it lifted my mood. After a break for 1 month my thrush has gotten worse ( I have constant thrush) so i began taking it again.

I just found out my sister was diagnosed with autoimmune disease today although theyre not sure which one just yet, so I really think I may have the same...
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Avatar_f_tn
So sorry to hear about your sister! How was she diagnosed,and does she like that doc? These problems do seem to run in families. Will you be seeing her doc also? Or do you live in different places?
Did you try the IDF for a local immunologist?
elbamom
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Thanks, by an endocrinologist but she still needs to see an immunologist.

2 of My cousins, my sister, aunty all have had thyroid isuues. So i think it must be genetic. They've all had their gallbladders removed including my mother but I've had 2 ct scans and no stones show up.

Yes, my doc will be referring me to one thanks a lot :)

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Just an update for everyone. So apparently I have all the celiac genes and I just discovered a tiny pea size lump on my sternoclavicular joint near my neck, my doc wasn't concerned but I'm booked in for an ultrasound anyway. Hopefully this might show why I've had a sore throat for more than 6momths although my doctor doesn't think so. I'm Getting a 2nd opinion this weekend.
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Just an update for everyone, I'm doing a 3d ultrasound tomorrow after visiting a gynaecologist he suspects bowel endometriosis. He wants to do a laparoscopy, but I'm not keen on being opened up if he isn't 100% sure. Will a 3d ultrasound show bowel endometriosis? Of the any people they diagnose after laparoscopy, I'd like to know how many end up NOT having the disease? Does anyone have any knowledge about this please? Thank you!
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Hi everyone,
Thank you all for your advice. I was diagnsed with endometriosis just yesterday and am now recovering from surgery. It was behind both ovaries & also at the back of my uterus towards my bowel. Hopefully the pain and nausea will dissappear.but only time will tell.

This past year has been hell but im optimistic things will get better now!

Lena
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Avatar_f_tn
I am glad you are doing better, sorry it took surgery to fix it. I would keep up with the D3 and also with the pro-biotic.

take care,
elbamom
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484160_tn?1343401521
Autoimmune disease tends to run in families, and having one makes for a higher likelihood of having others. I have mixed connective tissue disease, Hashimoto's Thyroiditis, Reynaud's Phenomenon, and Sjogren's Syndrome. It took persistence and the willingness to do a lot of research to learn what tests I needed to ask for.

Autoimmune is a notoriously hard thing to diagnose, so try to have patience. Once you find a specialist, be proactive. Make sure you research what the test results mean and learn how those results can be affected by medications, diet, etc. Doctors don't always take the time to explain diagnoses, or meds and their side effects. I guess they assume that because so much info is available online, you can just look it up.
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