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!

[JackieCalifornia]

try searching for:

                lyme disease "puerto rico"

and you'll come up with some interesting links.  It sounds from a quick read of some of them that there is a certain level of denial that Lyme is in PR, but that's true of the US mainland as well.

[billyjay3]

"Puerto Rico 'admits' to Lyme in dogs. :) If there's Lyme for dogs, I'd imagine that humans can get  it also."

I would like to know how did you learn that there is Lyme in dogs in Puerto Rico? I have been looking for information about this and so far have found that there is no Lyme.

[gibsongal]

i had a CT on my hip and showed nothing but after seeing the osteopath he dxed with bursitis. right away he knew! older wise good doc... when i massage it with ice i can feel it is large. and inflamed..so why is nothing shown on the CT?

going to neuro  Thursday so i may get MRI and should question the contrast part

much of your story, like mine in a way. but i was never referred. 2 years and i am finally going to a neuro. !!!
all my lyme tests were negative. igenx too.

stabbing pain twitches fatigue. temp 95.4 when i feel hot. joints, feet pain increases all over body with exertion.. even just drive to a few errands..

so sorry you are here but glad you found us.
my previous docs thought i was nuts. .

i transfered to the md i have now and he actually said,,,after reading my records from previous doc..

it went something like this.

Me: I don't know what is wrong, i thought it was lyme.

Doc:  well yes your symptoms are like lyme..i read you had many lyme tests. that were negative, you know you don't have  lyme.

Me: well i guess so

doc: "so you admit that you do not have lyme.

Me: ah yeah.

he was trying to catch me into admiting i have doubts  ..i have no dx on my condition, live in Vt have been bit by ticks as a kid in NJ ( we would pick giant ones off out heads! )  and 20 years here.. at least 6 i know of...no rash... or flu that i remember could have had a flu that co insided with tic, i don't remember ...
52 still have regular periods WTF! where is menopause..?

i think my issue is medication induced myopathy. a Rhumy i saw 6 years ago said that. at the end of her report...(i just got the records! this Aug. no one told me  ..as my records got passed from doc to doc no one read it!  and they all said, well you went to rhumatology in 2010, and they all said your rheumy was inconclusive...
i kept telling them that i went a long time ago.. 2007..i was dismissed. so now my records say, was seen by rhumatology in 2010...!
.

so get all your records!!!!  beware of medication.

BYW i had a hard time with circulation when i tried The Pill  in my 20's. could never take it. even the lowest dose.  

[mojogal]

I am glad you got a positive test and starting treatment.

Best of luck and we are here if you have and questions.

[cave76]

You're experiencing that perverse sense of relief that many of us (myself included) feel when we finally 'get an answer'!

So many times it's the not knowing that makes a person feel like their going crazy. "Knowing" gives a sense of purpose, even though the news isn't good news (about a disease) But at least now you can start trying to 'fix' what's wrong and you'll have a doctor on board! I hope he'll give the recommended doses and length of time for treatment-----not like the pathetic (sorry) 2 weeks of doxy!!!!

Nick Harris said (about people who had had doctors insinuate that 'it was all in their head")-----Now you can say, "Yes, It WAS in my head! The spirochete was in my brain and now I can try to get rid of it!"

Now you'll start the usual ups and downs of treatment. Don't be afraid and this group will always be here to listen to you.

[Elleon_arual]

Oh thank goodness, I'm not so worried anymore.

I just messaged cave76. My Lyme specialist doctor just called. My western blot came back positive.  They are starting treatment for me on Monday. They also want to run more blood tests , the Igenex one which I'm getting blood drawn for that on Monday too.

Honestly, I just cried like a lot. I'm so happy someone listened to me and I'm so thankful for that natural doctor I went to who looked at my blood and said it was Lyme.

[mojogal]

Most of my symptoms are neurological and with the herx I felt more like a "flu" I didn't get worse neurologically.

If it worked for your mother in law, it could work for you.

[Elleon_arual]

My mother in law only took herbs and juiced like crazy for two years. She went to the doctor to get the cancer diagnosis, that was all.  She then tracked down a natural doctor here in Scranton, PA (who unfortunately passed away or I would so be making an appointment with him). This guy was amazing, I've never seen anyone like him.  But with herbs and juicing, she completely beat it.  That was before I even met my husband so over 8 years ago, and it hasn't come back since.

I'm starting to question if I have Lyme but I'm also starting to question my sanity.  

[cave76]

And, what I've lost track of completely----- is do you really have Lyme disease at all? Sigh.

Perhaps the only way to find out is to be tested and treated via Burrascano or ILADS and wait and see if you get better or not. I did, but it took a heck of a long time. Some get better within a few months or at least less than a year.

Yeah, we'll all guinea pigs. :(

[cave76]

Can you make the appt NOW instead of waiting until the tests come back? It would shorten the time frame.

A herx usually means a worsening of symptoms. But usually it lasts only a week or a little more. My herxes with doxy were usually a slight nausea for which I took ginger tea or peppermint tea. The nausea went away after a week or more. But the best treatment (for me) for doxy nausea was Salt and Vinegar potato chips. LOL

Did your mother in law ever have any chemo or radiation treatments for her cancer------ or did she only use herbs and juicing?

[Elleon_arual]

Did your symptoms come back worse after you took the doxy? I am worried about the herx because most of my symptoms are neurological and I'm afraid I'm going to have a seizure or something like that.  

I originally went to a LLMD but have to wait until next week for the results of my western blot test.  Then I have to make an appointment and ask them what they think is my next move. I am going to call my homeopathic doctor I go to.  It's worth a shot...if my mother in law can beat cancer with only herbs and juicing, there could be hope!

[Elleon_arual]

I already take probiotics like that. I've been taking them for years because I suffer with irritable bowel.  The kind I take are the refrigerated kind.

[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.

[Elleon_arual]

Ugh I cannot handle them for that long! I don't feel sick when I have them, I just feel like my entire body is burning from the inside out.  Even when it's only at 99.4.  

Also, does anyone know if you can give someone Lyme disease? my husband is worried he has it, even though he has no symptoms.  LOL. I tried Googling it and of course there's yes and no answers.

[mojogal]

I kid you not, I had a low grade fever for 5 years. Now I am lucky if my body temp gets to 97.

[Elleon_arual]

Okay so i started my menstrual cycle today and lo and behold my fevers are raging! This is why i originally thought it was hormonal. The fevers started with my period in June. Then nothing in July. Then fevers with my period in August and then they never left...never above 99.4 except for now of course. Makes sense since some of you commented that Lyme runs in 4 week cycles and may correspond with a womans menstrual cycle.

[cave76]

You're so right about not calling people just when they're getting ready to get off work. Same goes for almost any time on a Fri and esp. in the afternoon. LOL

Bachelor of Arts----- by the time you finishing learning all this stuff you could get a Bachelor of Science degree! Or in Investigative Journalism.

Maybe she did get a B.S. degree but it also might have been a Bachelor or Fine Arts. It's not stated on the site what her degree was in, which may be an innocent omission, but the Devil is always in the details when it comes to MY health or others.

[Elleon_arual]

I am signed up for that portal but so far, none of my tests are posted there! LOL.  What a surprise.  The last one is the cat scan of my head when I was in the ER in June.  

That makes me nervous too... only a bachelor's degree for a job with a responsibility like that? I have a bachelor's, maybe I can do it!

I will put  a call in to them tomorrow on my break at work. I hate calling people towards the end of a work day... it seems they are much "lazier" at this time and don't provide all the information.

[cave76]

You can always call:

"Sandra Kelsey is the technical specialist for GML's Immunology, Flow Cytometry, and Serology Laboratories. She received a Bachelor's degree from Bloomsburg University and completed an internship in Immunopathology at Geisinger.

Sandra joined GML in 1982 and has worked in various areas, including Histocompatibility, Immunology, RIA, Chemistry, and Flow Cytometry."

Hmmm. Just a BA? Wonder how long the internship was for?

See if Geisinger Labs has an 800 number, then call Sandra and see why it's taking so long.

I know people that belong on these 'patient portals' where the information is really slow to get posted. My patient portal is spotty---- sometimes slow sometimes fine.