I also need to add low blood pressure (80/50 lying down, drops further when I stand up)
And low body temperature (94.8-96.5)

I also do not live in a country that has Lyme Disease or any other insect borne diseases.

Hi there, I'm so sorry for all the health issues you are experiencing!!!

It may be there where you live, there is not much concern about insect borne diseases, but viruses and bacteria are getting better and better at popping up in places we never would have imagined.

I don't want to sound like a broken record on this forum, but your symptoms sounds SOOO much like my husband's, even some of the things I never mentioned when I originally posted here, like the hypermobility stuff. My husband has Lyme, Babesia, and likely also Bartonella, and possibly other additional viruses/bacteria. Its like he got one infection and then another until his immune system was overloaded, and then he just got SOOO sick from having to deal with it all at the same time.

Have you researched anything about Lyme online?? There are people with Lyme who live in all sorts of places. There are recognized strains in both Europe and the US, so I would think that if it is possible for a tick-borne bacteria to make it across the Atlantic Ocean, it would be possible to even make it to a country that is not recognized as "endemic" for Lyme.

Also, have you had your hypothalamus & pituitary gland function checked?? the low blood pressure/body temperature, dry eyes & mouth & skin, and weight loss are all body functions that are regulated by hormones, so it would make sense that your body is not doing the best job with regulating the hormones. Of course, WHY it is not regulating hormones correctly is the question.. but if you could get some hormonal treatment that might help some of those symptoms at least.

Thanks for replying.

My rheumatologist said there has no been a case of Lyme Disease diagnosed in this country. I have traveled to Australia and Samoa, but after my symptoms started. We don't have ticks here where I live and no mosquito in my part of the country.

I've looked into Lyme Disease, but I've been told it's extremely unlikely/almost impossible.. I have never seen a tick, I don't know what they look like! So I don't think it's worth looking into it. I'm also on Doxycycline which is a treatment for Lyme Disease and it hasn't improved my symptoms.

I haven't had my hypothalamus & pituitary gland function checked, how would they go about doing that?

Thanks.

Our dermatology website says- In New Zealand, cases have only been reported in people that have recently travelled from an endemic area.

Australia has the same message and I can't find anything about Samoa. However my symptoms started before traveling to Samoa.

From what I understand, it seems like Lyme and some of the infections that my husband has can cause these kinds of neurological and endrocine symptoms because it can cause inflammation in the brain and nerves, which then affects the function of whatever that nerve is traveling to. So it could be that your body is having a really overactive inflammation reaction to SOMETHING, maybe something you were exposed to at one point as a child that then started a chain reaction and caused auto-immune response that is affecting your neurological and endocrine systems even now as an adult? Have you ever tried going on an anti-inflammation diet?? It might help to make some of your symptoms less severe if inflammation is contributing.

Anyhow, an endocrinologist would be the specialist to go to for the pituitary and hypothalamus function. I think it is just bloodwork, but you have to get a doctor who knows what tests to run and which ones are most useful. You might want to check out the function of your adrenal glands too, when they don't function correctly it can cause serious exhaustion and fatigue.

I found this link to a research article talking about them finding Lyme bacteria in ticks carried across the ocean by seabirds!! One of the places they found this was in an island off New Zealand too. Craziness.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC228686/pdf/333270.pdf

It sounds like you also have orthostatic intolerance (when your blood pressure drops a whole lot when you stand up). My husband also had this. He had to get a "tilt table" test with a cardiologist, which confirmed it. That doctor was useless though, he just told my husband to increase his water and salt intake (which helped a little). We then went to a neurologist who specializes in autonomic nervous system issues, and she tested a bunch of his nerves, and then gave him a medicine called Mestinon (which is normally used for myasthenia gravis) for the orthostatic intolerance which really did help him a lot. Maybe you could look into that too?

Thanks.

I don't recall any triggers, infection or otherwise, but it was 13 years ago! Do you mean that something could have trigger my immune system to start attacking itself and causing these problems?

I'm on a gluten free diet for Celiac Disease, but I haven't made any other changes to my diet. I have a pretty healthy diet though. I drink a lot of water (about 5 liters a day) and have plenty of fruit and veges, lean meat, grains etc.

I have a goiter as well. I forgot to mention that. My TSH is always normal and I've just had my Free T3 and Free T4 tested last week. My GP thinks I might have a thyroid problem, but she wants to get to the bottom of my arthritis symptoms first. Then she said thyroid is next priority, then my PCOS symptoms next! Great fun this is going to be! I don't know anything about adrenal glands and what symptoms of a problem would be.
I'll have a look at that link. I just don't think Lyme Disease is very likely. If I lived in USA or Europe, then I think it'd be very likely. But where I live, probably not..

I've heard about orthostatic intolerance. I'm pretty sure I have this because I faint if I stand up too quickly. I've fainted after blowing my nose and in the shower before too. I've heard of the tilt table test, but at the moment, this will again have to take a back seat. My rheumatologist just said "I wish my blood pressure was as low as yours"... REALLY helpful! My GP told me to eat more salt and said that it'd help with my goiter too.. I'll look into that medication and see if it's available here.

I think I've got a number of things going on and it's a matter of priority at the moment!

Thanks so much =]

Hey again,

Yeah, from what I understand about autoimmune processes, they can sometimes be set off by "small" things, like I have a friend who got type 1 diabetes (which is autoimmune related) after a bad cold. Sometimes when your immune system gets triggered, some kinds of bugs (bacteria, virus, whatever) make it so the immune system reacts wrong and then starts to attack your own cells instead of the bugs. Then you not only get damage to whatever cells your immune system starts attacking, but you also get an inflammation reaction from your immune system which can cause additional issues (like Celiac's, where the inflammation in your intestines makes it so you can't absorb nutrients well).

For the thyroid, I have heard that it is also important to have your doctor check and monitor the ratio of free T3 to total T3. I think they call it rt-3, you should look it up. So see if your doctor will check that for you too.

Good luck in your search. I'm so sorry you've had so much to deal with for so long, it is very unfair. I hope you find some treatments that will give you relief.

I don't recall anything setting this off, but like I said, I was 8 years old so who knows.

I've just had my Free T3 and Free T4 tested so I guess we'll see what that shows.

Thank you for all your suggestions.

i think reactive arthritis could be a possiblility!!! tests are correct for it.

The textbook term is "Reiters Syndrome" ask your rhumatologist!

have you been tested for the HBL-27 gene?


thats why the docs were thinking celiacs disease

dermatomyositis?

I have Behcet's Disease. Did a doctor suggest that?? If so, that's pretty amazing. Behcet's is so rare. None of my doctors thought of it, I diagnosed myself. (of course i found a doctor to make the "official diagnosis") & them seeming like they're not concerned - i've learned that it's normal for doctors. i think a majority of them do that. as for a diagnosis of Behcet's - most of your symptoms match up. if you could message me or email me, i could probably be more help. so i can better explain it, and get more detail from you. i'd love to try & help you out. since my medical mystery, i've tried reaching out to many people so no one has to go through what i did. here's my email: kenzie.camille@yahoo.com

I don't have exact dates, but always had gastrointestinal problems in my early teens. Progressed to spastic colon and esophagus. Later had heavy skin covering, dark and tight skin. Biopsy showed scleraderma. Rare. Fibromyalgia was diagnosed in my 20's. Blood tests showed NEG for scleraderma!!! That ANA test? Now, at 65 diagnosed with even rarer autoimmune - achalasia - VERY rare - but doctors that can treat me are 1/2 a days ride and I am alone. Just because blood tests show one thing but disorder shows another - it takes a LONG time - Mine took 10 years to diagnose! Don't give up and don't let anyone put you down for having an issue they can't SEE.