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Avatar universal

In desperate need of answers...please help.

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!
59 Responses
Avatar universal
Elleon,

Reading your story is like reading hundreds of others who have or suspected Lyme and got the same treatment----with small variations in symptoms.

First let me say---- none of us here are doctors. But many of us have been in your shoes and have gone on to devote much time to trying to help others wade through this morass of mis- and dis-information. And we certainly can't say WITH CERTAINTY  that you do have Lyme or one of it's co-infections. But your experiences and symptoms are so similar to what many of us have had to endure.

I'm going to address and try to a answer some of your concerns first. This will be just a primer and I'll apologize in advance if my reply seems a bit brusque. That's because I'd like to hit the 'high spots' first----- then I/we will welcome further questions from you.

So-----  PA is a state with a high rate of infected ticks. You already knew that.

1. A rash, of any kind, is only present about 50% of the time.

2. Many people never feel the tick that bit them. One stage of a ticks life is the nymph---- which is TINY and people report that they don't feel them.

3.  A  test done by any lab other than Igenex has a very high rate of error. I'm going to guess that you didn't have a test done there. Igenex tests aren't foolproof either but much better than a CDC sanctioned test.

4. I'm curious about the 'lyme specialist' you said you went to who said the test he wanted to do wasn't covered by insurance. Of course I don't know what your insurance plan is like----- but Igenex tests are covered by almost all insurance companies. Maybe that doctor meant that Igenex doesn't bill your insurance. That may be true, but Igenex will give you paperwork so you can send it to your insurance. Igenex always paid for mine.

5. There is NO test, ANYWHERE that will show if a person DEFINITELY does or does not have Lyme. I always had negative or indeterminate test results from Igenex but my llmd treated me for Lyme after doing many other tests to make sure I didn't have MS, lupus or other conditions. (You've already had most of them done-----so you're ahead of the game now.) My blood work always showed a picture of a healthy person, while feeling like road-kill!

6. Please tell me that you've kept copies of all your test results. :) If you haven't, please ask your doctor(s) for copies and then start keeping any further test copies.

If you wouldn't mind, would you please google Tom Grier then pick the listing that's from LymenetEurope. (Sorry I can't give the link----- forum rules here forbid that) Read his articles, please. They're written so laymen can understand easily.

One last thing------I'm fully aware of how people almost go broke testing and treating for this elusive disease. I understand that your finances are keeping you from getting tested and treated. That's a story repeated over and over and I don't have any viable suggestion for you. I can say, though, that many people have resorted to treating themselves with veterinary doxycycline (that's usually the first drug given for Lyme). I can't say I approve of that------ but it's a fact.

Below is a link to some more info on Lyme that's been posted here. Ricobord is the poster you want to read----- she's active here with detailed information. So much so that some people are overwhelmed by the 'brain-dump' of information--- LOL ---- but it's here and it's free!

http://www.medhelp.org/posts/Lyme-Disease/Could-it-be-Lyme/show/1995327#post_9499585

Í'll stop now and await your answer and more questions.
1763947 tn?1334058919
Hi, sorry about all you have experienced, it has happened to most of us.

Just to add to what cave said above for your own knowledge I would go to ILADS.org. The Lyme association. There are interesting articles there including Burascano's treatment guidelines.

You can also ask them to point you in the direction of an LLMD (Lyme literate Dr) near you.  I am from Northern Va and my old Dr had patients driving from PA to see her but there may be more LLMD in PA itself by now.

Once you see an LLMD, make sure they test you at IgeneX labs for Lyme and co-infections. Like Cave said always get copies of your tests.

Let us know what other questions you may have.
Avatar universal
Hello,

Thanks for the comment. I have no idea what Igenex is or even what type of tests I had done for Lyme. I just went to a typical medical lab to get blood taken and sent out.  

The woman I went to see who looks at live blood under a microscope said that the lyme specialist I saw was a Lyme literate doctor.  I guess he has chronic lyme disease himself and throughout the years, has really changed his practice to concentrate on lyme. I didn't see the actual doctor either, I saw his assistant since he is booked until the end of November and I can't wait that long because I'm going insane.  She is the one who told me about the test that the insurance won't cover.  That's all she said...the insurance won't cover it.  She didn't say if I could try to submit to my insurance after or not, just that they won't cover it up front.  She didn't say what type of test it was or what lab processes it only that they have to send it to California to get analyzed so it may take a while to get the results.  She is also the one that said, not that it DEFINITELY shows a positive or negative but they have had really great luck with diagnosing  people because of it. I guess I worded that wrong in my original entry.

She's the only doctor that decided to test me for lupus and rheumatoid arthritis first.  I am still waiting for those results . Based on those, we were going to decide to go ahead with the other lyme test or not.  I talked it over with my husband and I'm pretty sure I'm going to get it done no matter what because, like I said, this has totally thrown my life upside down.

I actually don't have copies of any of my tests/blood work...but I did make an appointment with my primary physician tomorrow and I am going to ask for copies of everything.  

I don't really know where to go from here.  I've definitely spent more than a few hours researching online about various symptoms of lyme and I do have more than enough to consider that I have it. But I live a drug free style, I barely take Tylenol...and I don't know if I could take antibiotics without knowing for sure that I have it.  I am just worried nothing will ever show that I have it but they will treat me with antibiotics anyways. But I guess at this point, I'm willing to do anything.
1763947 tn?1334058919
I was misdiagnosed with Lupus and MS so be careful.
Avatar universal
I know, I am SO terrified of being misdiagnosed  because I know that Lyme mimics so many other diseases. I'm going to ask my doctor tomorrow to recommend someone outside of my area to go to because seriously, the doctors where I live are useless.  If you are sick in this area, it's a death sentence.
Avatar universal
Elleon,

Thanks for replying. Sometimes too much information in one big lump is too much for people and they just disappear. :)

I have to run now and will go at this information thing backwards--- for now---- IOW giving information NOT to believe or do. Yeah, crazy, but then sometimes that's simpler.

1. Do not believe ALL that the CDC says about Lyme. The CDC has some of it right but not all.  The CDC is great for so many things and I'm thankful that we have it---- but not for Lyme.

2. Do not waste your money or time on any Lyme tests that aren't from Igenex.  If your tests were 'sent to California' then the chances are pretty good that it was Igenex.

I'm not sure I'm following your comments about who took what and where. :) But that's o.k. ------ since you said you were going to start antibiotics anyway-----good plan. And remember MANY of us, myself included, never had a positive for Lyme (through Igenex) but because our doctors knew enough we were started on abx (antibiotic therapy) right away.

Read about Igenex at:
http://www.igenex.com/Website/

I know that a lot of that will read like gibberish but you'll become like the rest of us after you start learning. But this is important for you.

"PAYMENT FOR TESTING
Prepayment

We require prepayment at the time the specimen is sent to IGeneX for processing. We accept Visa, Mastercard, Discover, American Express, Personal Checks or Money Orders. A statement will be mailed to you with information to send to your insurance company for reimbursement."

And your comment:
" But I live a drug free style, I barely take Tylenol...and I don't know if I could take antibiotics without knowing for sure that I have it.  I am just worried nothing will ever show that I have it but they will treat me with antibiotics anyways. But I guess at this point, I'm willing to do anything."

How many times have I heard that? How many times have I said that? Hundreds? Hundreds of hundreds? Get started as soon as you can. Then in a few months or a year you'll look back (when you start feeling things shifting towards 'better' or even remission you'll wonder why you were so worried.

But the good news is that sometimes improvement starts quickly.

One bit I'd like to say though, and you may not want to follow up on this (and I'm definitely worried about making you more nervous than you are----- but I've never felt that partial information is sufficient) -------------- but so many of your symptoms sound neurological. That could be 'just' Lyme but it does seem as if Bartonella henselae might be a co-infection that's causing so many of  them. The same tick bite can pass on not just Lyme but other tick-borne co-infection. Ticks can be little sewers for infections!

But that's edging toward diagnosing and that's my bad. But it is a consideration that your doctor can decide and talk to you about.

Another topic will be our Herxheimer (Herx) reaction. It's real and it means the spirochetes (bacteria) are being killed. It's a 'good' thing but you might not think so at the time. Don't worry about that for now.
Avatar universal
Also, does anyone know if Puerto Rico has ticks? I can't even remember the last time I was outside to get bit by one but in early May, my husband and I went on our anniversary cruise and we went hiking/zip lining in the forest of Puerto Rico.  About 2 weeks after we got back is when the burning pains started and about a month later is when the head pressure started.
Avatar universal
Hello,

Thanks again for all the information.  Yes, it is a lot to take in and I keep re-reading your comments to try to soak it all in.

Just  a quick question because I'm at work.  The homeopathic doctor I went to...she pricks your finger and looks at your live blood under a microscope and she is the one that said I have all the signs in my blood that she looks for that shows Lyme.  She does recommend a natural way to treat Lyme but she did say in my case, she didn't feel like it was strong enough because she was afraid the infection is in my head.  Whatever she looks for in the blood for Lyme was VERY strong in mine and she was concerned about another infection that was affecting my head.

Would anything like that show up in an MRI? I did have an MRI of my head (without contrast) and they said everything was normal.
Avatar universal
Puerto Rico 'admits' to Lyme in dogs. :) If there's Lyme for dogs, I'd imagine that humans can get  it also.

Getting an area that might depend on tourists for income to 'admit' to having a serious illness is problematic.

Their vector agency isn't going to be as vigorous as, say, in CT. :)

Which bring up an interesting point----- if you did get infected in PR then you might have an entirely different strain of Lyme or even a tick borne disease that can still cause immense problems but not be strictly (sensu stricto) be Lyme disease.

That might be something you'd like to discuss with Nick Harris at Igenex (or your doctor might). Nick is usually very accessible just ordinary people and if he has the time he will talk to you.
Avatar universal
Great, that would be my luck to get a weird strain of Lyme! Weird things tend to happen to me!

Who is Nick Harris? How do I get a hold of him? My doctor just laughs at me when I tell her what I think I have so mentioning anything to her is just going to be a waste of time.

Do you know anything I can start taking now, say over the counter or natural that may help the symptoms? Like I said, I'm desperate... I just cancelled a vacation (nonrefundable) to San Francisco in two weeks because I'm literally terrified to be too far away from home with all these symptoms. And every day is something new.

Also, have you ever found a tick on your body? About a month ago, I was in the shower and happened to feel something small and hard on the underside of my breast.  I am big busted so it's not like I can really see under there easily, I just happened to feel it when I was lathering up.  I was able to use my fingernail to scrape it and something dropped into the shower so I never saw what it was.  There was, however, something black still stuck like deep down so I used tweezers and a pin (yes  a pin lol) to dig at it to get it out.  It didn't look like anything to me at all but it literally left just like a little hole in that area.  A legit hole.  SO I was wondering if this could have been a tick? I have NO idea how it would've gotten there tho! And there was no rash, no swelling, nothing just plain skin. It looked like a little black mole but like I said, it felt hard and I was able to pick it out. Please let me know what you think!
Avatar universal
Nick Harris is the owner of Igenex. There's an 800 number to call on th web site:
http://www.igenex.com/Website/

He's always been helpful if he has the time. And an 'interesting' topic like yours might pique his interest. But the tech in charge of the lab is also helpful. Don't count on being able to count on being able to talk to him---- That was my 'promise' but I've been able to talk to him (I'm a nobody)
As I said----maybe your doctor? Or an email  from you?

I'm going to take a very big chance at irritating you or others here----- but a homeopathic doctor would be close to the last choice I would make for treating Lyme. Sorry.

I can't think of anything 'natural' to take. But eating  healthy, and keeping a healthy life style (which I think  you already do) would be the best you can both before treating and during. Not to say there aren't some things you, personally, might take that could help with symptoms.
I'm sure someone else will come here and offer suggestions for the supplements that they found helpful.  

The main thing about supplements-----it's not that I think they're useless, but to use INSTEAD of science-based medicine is fruitless in my opinion------ and in many others.

As we've said here many times---- Get thee to a Lyme specialist. But make sure they're a GOOD Lyme specialist.

I just posted a new thread you might want to read.
http://www.medhelp.org/posts/Lyme-Disease/Referrals-for-a-doctor-from-ILADS-and-LDA/show/2017609

I'll answer your other questions tomorrow. A friend just stopped by and I'm a pumpkin after dinner (Pac.Time)

1763947 tn?1334058919
I had a brain MRI with contrast and they found my Lyme lesions thus I got misdiagnosed with MS from that, lupus was positive on my blood work, I became hypothyroid.... Etc etc....

I think the best way to treat Lyme or one of its co-infections is antibiotics. I have supplemented with natural herbs.

There are herbs that have antibiotic properties but I wouldn't count on them being strong enough. Other folks think differently.
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