In desperate need of answers...please help.

[Elleon_arual]

Hello!

I am a 27 year old female in (well used to be) great health.  I worked out 4-5 times a week, I eat healthy, juice and all that stuff. The only issue I have is very very mild hypothyroid... my doctor said I could have gone until I was 40 without knowing I had it.

Back at the end of May (2013) I started getting sharp burning sensations all over my body. Mostly in my arms and legs but I've had them on my chest, back and even my head before.  I thought it was a pinched nerve from weight lifting or something so I ignored it but these burning pains never went away.  About 3 weeks later (June 2013), I was sitting at work at my desk and I started getting a very weird feeling in my neck/base of my skull.  It got very tight and felt like a lot of pressure.  Over the next three days, this feeling increased and continued to expand into my entire head until  I was so dizzy from it, I ended up in the emergency room, sure I was having a stroke or something. They did nothing there but an EKG on my heart and blood work and sent me on my way. Four days later, I ended up back in the ER. I was really dizzy again, pressure in the head, and having trouble walking because of it.  They did do a Cat scan then and more blood work and said everything came back normal.

Since that awful day in June, the pressure in my head has NEVER left. It has certainly let up a lot so I no longer think I'm having a stroke but it has completely ruined my life.  Since the ER visits, I've been to a neurologist, endocrinologist, my family doctor, a gastroenterologist, and an ear nose and throat doc. I've had an MRI and got tested for everything under the sun it seems like and everything comes back normal.  I've had two Lyme tests with my blood work and both came back negative.

I continue to get new symptoms daily...besides the daily pressure in my head and dizziness, I've started running low grade fevers (never higher than 99.4 F). These will spike, almost like a hot flash, last for about 5 minutes and then go away for a few hours. With this, I get really burning cheeks...but my face never looks red at all. And sometimes I'll have really hot burning cheeks and am sure my fever must be up to 103 F but when I take it, I have no fever at all. The burning pin pricks of pain have worsened to the point where I feel like yelling out in pain sometimes.  I have severe shaking/tremors in my hands.  I have severe jaw and throat pain almost like TMJ symptoms.  The past week I've started getting muscle twitches that have lasted the full week and my left eye has been twitching for days now.  Everything hurts.  When I wake up in the morning, I feel like I got hit by a truck.  I've become very tired.  My hair is falling out A LOT.  It has fallen out before because of the hypothyroid but never like this...it's everywhere.  I've started having breast pain which I've never had before (and I'm not pregnant because that's the first thing my doctor tested for).  My lymph nodes have started swelling up.  I had a CT scan of them which came back normal and even went to an oncology doctor who pretty much said that I had no need for concern about that aspect.  

I feel like I am losing my mind.  All the doctors I've been too think I'm nuts.  If nothing comes up in the blood work, there's nothing wrong with you in their eyes. I've been to a natural/homeopathic doctor who can't figure out anything.  I've also went to someone who looks at your live and dried blood (don't judge, I'm desperate).  She did say that my blood shows I have a very bad infection and that my blood showed all the signs for having Lyme.  Now I live in Northeastern PA so ticks are not uncommon here and it seems like this summer alone, I know about 10 people diagnosed with it.  However, I never had a rash and don't even remember being bit by a tick. There is a lyme specialist doctor in my area but the test he wants to run that he says will show if I definitely have lyme or not is $260 and isn't covered by insurance.  Needless to say, after paying all the co-pays for doctors, ER trips, and completely out of pocket for the homeopathic doctors, I have no money right now to get this test done.  

I am  DESPERATE if anyone could provide me with any kind of answers to my symptoms.  I don't know what to do anymore.  It has completely ruined my life...it has been over 3 months since the symptoms started. All I do is go to work and go home and lay in bed.  I am married and my husband have been very supportive but I do know it's putting a strain on both of us.  We even moved out of our house thinking that there was mold or something and that's what was making me sick.  But my symptoms never improved.

If you have any information for me, I would really appreciate it.  

One last thing... in May 2013 I had quit birth control after being on it for about 7 years.  I was getting ill during my period week and my gyno wanted to switch my pill but I just decided I had enough of it.  I originally thought this all could be hormonal because of that but I am definitely having my doubts now.  I started my birth control again about a month ago to see if any of the symptoms went away and so far, none have.

Thanks!

[Elleon_arual]

Well I am still waiting for the Western Blot to come back from the Lyme doctor I went to (the one I messaged you about). So I  don't know if I should see how that turns out (even though it's not reliable) and then talk it over with them and see how they want to treat me or just go ahead and try the 2 weeks of doxy my family physician wants to try.

I don't however want to take the doxy for 2 weeks and then have the symptoms return even worse because I honestly don't think I can handle it.

I have no idea what to do.  At this point, I'm ready to give up. I don't care anymore, I will forever just live a miserable life because honestly this is all ridiculous to me.

[cave76]

IF you decide to start antibiotics you really need to be on probiotics at the time. Did that doctor mention that?

There are many good brands out there. Most people take the kind that are refrigerated and have a good mix of bacteria and have high doses.

[mojogal]

2 weeks of doxy won't do much but better then nothing. It may give you a herx, as it did for me the first time I took it. In reality although herxes feel bad, it means the meds are killing the bugs and your body is getting rid of the toxins.

If you are unable to find an LLMD, or even an integrated medicine doc, I might go to a naturopath. I believe in antibiotics to kill the bugs but others believe you can get well with herbs. I take herbs as a supplement to my antibiotics.

Something to think about.

[cave76]

Two weeks of doxy is NOT normal except within the narrow constraints of the IDSA guidelines. Those guidelines are potentially dangerous---- because of the dangers of undertreating----- iow kill off the weak bacteria (Bb) and send the strong ones into hiding, only to come out after doxy is stopped.

400 mg a day for 3 or 4 months (usually more) is what ILADS recommends

"28. Dosage
Increasingly, clinicians recommend that certain drugs used for
Lyme disease be given at higher daily doses: for example,
3000–6000 mg of amoxicillin, 300–400 mg doxycycline and
500–600 mg of azithromycin. Some clinicians prescribe antibiotics using blood levels to guide higher doses. Close monitoring
of complete blood counts and chemistries are also required with
this approach."

The two week course MAY help with symptoms. Temporarily. If at all.

A herx is usually no fun. :( I can't say if you will get a severe herx or not---- and herxes are very subjective.

But almost all of us have had a herx or two or many more and lived through them. That's all I can say.

You really need to get to a doctor who really knows about Lyme disease! The doctor you're seeing is not the one. (That's tough love and it's hard to hear but it's true.)

[Elleon_arual]

Well my doctor said she is willing to give me the normal two week dose of the doxycycline.  I know I need more aggressive treatment since it's been months with symptoms. But do you think this two week course with help alleviate any of the symptoms?

Also I have been reading a lot about herxing (?). I am slightly terrified of this because if my symptoms get any worse, I'm sure I'll have a stroke.  If anyone could help me out with more info on that, I'd appreciate it.

[cave76]

It's not been completely verified (if at all) that a person can pass on Lyme.

There was a flurry of conjecture a few years back about that. That was probably because Bb (Borrelia burgdorferi--- the name of the spirochete responsible for Lyme) was purportedly found  in semen of at least one person.

So, IF there were to be transmission between sexual partners it would be more from the male to female.

The general consensus though is if a family member or sexual partner had Lyme it's because they share the same environment rather than transmission via blood/semen/coughing etc.

So, I would say, that no, your husband won't contract Lyme FROM you. But that's just my guess based on what information I've read so far.

Speaking of which---- a while back you wondered if you might have contracted Lyme in PR because you said you said " I can't even remember the last time I was outside to get bit by one"[tick]

I didn't comment at the time----- but a person doesn't have to go outside to have exposure to a tick. Wherever mice are (and they're in the best of homes/apartments/condos,,,,,,in the walls, basements, attics etc.) a tick might fall off that infected mouse after it's final blood meal, lay it's eggs (between a few hundred and several thousand). When they get to the nymph stage they will look for carbon dioxide from a mammal and perhaps bite that mammal.

Just because those ticks are often called deer ticks it's the mice you have to be concerned with.