I BEG you to read this. I am so lost.

[lauren9748]

PLEASE. I beg you to read this health history. I write this in tears of frustration and fear. If you don’t have the time, maybe skip ahead to 2013… I could use all the help and support that I could get. Thank you SO much in advance.

2000 : Root Canal because when I was 9 I fell and chipped my tooth and then it finally died.

2005: Mono

2006-2007: Extreme dizziness, fatigue, brain felt “fuzzy”, chest painTESTS: blood tests, MRI, echocardiogram = NORMAL  

2008: While in India I got an infection on my hand. Went to bed normal, woke up with a “wound” that appeared on my hand about the size of 3 grains of rice.  Pussed and was itchy and deep. Went to the hospital and got treated by a homeopathic doctor and it went away in about 3 days.  No scarring or evidence that it was there or what it even was.

2009-2010: After 6 months of camping in Canada (in one spot while building a house), I came home with extreme digestive pain. Every time I ate my stomach got so bloated I looked pregnant.  Undigested food in stool, mucous in stool, and stomach cramping.  (lasted a little over a year) TESTS: stool test for parasite = NEGATIVE

2012: Crazy foot pain in my right foot. The ball of my foot (on the big toe side) feels bruised to the bone and painful to walk. When I bend my big toe back, it feels sprained.  

October 2013: Pain spread to now being in my left foot too. I thought maybe I had a stress fracture due to lifestyle.  Got an x-ray. One week later I woke up with horrible knee pain and was losing my hair (thinning- lost about 1/4th total hair. Never bald patches).  It was like the pain in my feet started traveling throughout my body.  I also got pain in my fingers, wrists, and in weird “surges” all over my body. As if someone was pushing on a bruise and then easing off.  I could have between 5-20 surges in the course of a minute all over my body, while the knee and feet pain remained CONSTANT. TESTS x-ray = NORMAL / blood tests = low in B vitamins and Iron despite the fact I eat a stellar diet involving mostly all vegetables  + grassfed meats, healthy fats, and minimal grains ( don’t digest them well and I avoid gluten) /WESTERN BLOT LYME= negative/ THYROID = normal / ENDOSCOPY = normal

One month ago (August 2014): The pain in my feet has never gone away for the two solid years that I have had it.  The hair loss seems to have stopped and the other joint pain was under control. About a month ago, I started getting a sore burning throat, swollen glands in neck and ZERO appetite.  These symptoms are the same to this day.  About a week after I got the sore throat, I was camping on the beach and woke up with a wound on my leg the size of a dime. It wasn’t there the day before and was full of pus. Doctor said he didn’t know what it was even though I suggested possibly staph?  After 1.5 weeks it went away.  (It definitely reminded me of the experience I had in India)

Currently as of the past week: besides the continuous foot pain, my knee pain is back, I still have NO appetite, I have a surging dull ache two inches above my belly button to the right. Is this my liver? It is bizarre.  Also, last night I noticed my right armpit was sore and it appears I have a lump/swollen gland/blocked hair follicle? I think since it is painful it is supposed to be a good sign.

I AM SO FRUSTRATED.  My herbalist has been treating me as if I have lyme/ co-infection Bartonella (especially because of the characteristic feet pain). My symptoms have been better since starting the herbal tinctures but I still have symptoms, and as of the past month, new and different symptoms.

My doctor legit looks at me through a lens of crazy.  He thinks I try to read too much up on what I could have and I explain to him that it is my body, and I seem to be the only one committed to figuring this out.  I loved him until I started going through all of this, and now I constantly feel shame and embarrassment.  Thus I just got an appointment for a doctor on Thursday with someone a bit closer to me. I am going to bring him this health history that I wrote out, and hopefully start over.  Part of me is relieved to speak to someone else, yet I’m also exhausted and frustrated and don’t know where to start.

Does anyone know what I could have? Let me warn you that I have had many emotional breakdowns about this.  Throughout the past 4 or 5 years I have cried about the fact that I may have a life threatening illness, such as cancer. Especially as of late, my mind keeps going down that path and I just can’t seem to get out of it. It is literally making me feel worse and more upset.  So please don’t just blurt out “maybe you have cancer”  because I can’t handle it. If it DOESN’t sound like cancer, please tell me., If you think it could be something else, please tell me.  I realize I should probably go to a lyme literate doctor and explore that route, but I feel paralyzed by the fact that they probably don’t take insurance and I can’t afford to pay thousands of dollars JUST TO SEE if I have something. I am willing to pay for treatment.. I’m just so sick of this guessing game.  Thank you for listening!

[lauren9748]

Thank you Bob and Jackie! I have thought about the vaccines and just possible things I could have picked up in my travels in general.  When I go to my new doctor thursday I will ask him if he could refer me to someone. Thank you!

[JackieCalifornia]

I'm NOT medically trained, but I have travelled and worked in Asia, Africa and the Middle East (and Europe), and before I started all that, I went to see an MD who specialized in 'tropical diseases' -- that's an old term, probably from a hundred years ago, but you'll still see it in the literature because it is a handy catch-all name for diseases you might not see in the USA, even if the diseases are not really from the 'tropics.'  

Docs who work in such unusual areas of medicine are accustomed to thinking more broadly about diseases that other docs maybe heard about once in med school, but have never encountered in practice.    

Given your travels in India, it may be possible that you picked up something there that was never diagnosed here, because docs here would likely not have ever encountered many exotic diseases.

This may not be an issue, but my first stop, just to rule out anything you might have had since your travels, would be to consult with a specialist in that field.  I just search online for:

            -- tropical disease MD boston --

and got, as expected, quite a few interesting possibilities.  

Boston, more than many or even most US cities, has a motherload of excellent specialists, partly because of the university teaching hospital and medical schools there.  

I would find a doc who specializes in tropical disease, even if your insurance doesn't cover it.  Most insurance will pay at least part of a bill even if the doc is not in their network.  At worst, the tropical disease doc could rule out the more exotic diseases and give you a suggestion of who to see next, if s/he is not the right one.

It's what I would do.  Let us know how it goes, okay?  Best wishes --

[nutrinut_bob]

Two things to consider.  The sore from India sounds like it may have been some sort of bug bite, which does make lyme and some of its coinfections a possibility as ticks are not the only bugs that can carry microvermin passengers.   Another possibility is mycoplasma contamination of vaccines you may have gotten before going overseas, as with lauren4jesus in other posts here.  I know this isn't much help, just adds to the maybes.  Shoot, I don't even know for sure just what I have, but I know it's getting better, thankfully.