Anyone with lyme let me know if this sounds right! thanks!

[Krissy820]

OK guys, so i have posted on a few forums, but this one just hit the nail on the head, and i need to tell you my story and figure out if this seems similar to anyone out there. It's a long story, but ill try to be as brief as i can. OK>>> So, I am an 18 year old married mother, and I have always had great health, other than a few minors. ( i had tubes in my ears as a baby, but never suffered ear infections till this year, and also, delivered my daughter c-section, due to the cord wrapped around her neck.) Other then that, my health has been perfect, up until this September. I started school and WABAMMM! hit with what my family calls the crazy plague. OK, so i did camp all summer almost every weekend at the Kankakee River, but i don't remember suffering any tick bites. I do remember a tick being on my hand at one point, but i don't remember actually being bit or anything. Anyways, so I did however have a really bad rash over the summer that worked its way all over my body, and i also suffered from severe Iritis. I didn't go see a doctor for the rash, but i was being treated for the iritis. After a little while the Ophthalmologist wanted me to have some tests done to make sure i didn't have a immune system disorder, such as tuberculosis or lupus. the tests came back normal except that i had some inflammation. OK. so that was the summer, I started school in September and everything was honkey dorey until Octoberish, when i suffered a really bad urinary tract infection. The pain was soo bad at one point that i thought i had a kidney infection and went to the ER. anyways, i was on antibiotics, and went back to school. Then I started suffering what i would call "out of body experiences" where my head felt like it was 20 lbs, and i felt soo out of it that i was there but not there. This would occur only sometimes, and sometimes nausea would come along with it. I didn't think anything of it because it wasn't really affecting my life, so i just bared with it. Then around early November, the nausea got persistently worse, making me have no appetite, and just feel icky all the time. I was trying to set up an appt. with a rhuematologist, but because i have the medical card, its hard to find even just a general MD. So, i sucked it up and kept going to school. Around December, the nausea and dizziness just kept getting worse and worse, until i constantly felt like i had stomach flu or morning sickness. So i decided to go to the ER for it and December 31st. The ER doctor explained to me that i had inner ear fluid, and my equilibrium was off. So, he sent me home with meclizine. I then went to new doctor after the meclizine wasn't doing the trick. The doctor said i had a double ear infection and prescribed me with amoxicillian, and wanted me to have an MRI. I got the MRI mid January which showed a sinus infection, so i was then put on augmentin.  Sooo, during this crappy time, i was just sick all the time, but i continued to go to school. Until one day i woke up, and i was sooo dizzy that my husband had to carry me to the bathroom. Finally after feeling like i was dying, i had my mom take me to the ER. On the car ride there i suffered from what the doctors said what a severe anxiety attack, which i had never had before. (my entire body locked up and i felt paralyzed, and i felt like i had a boulder on top of my organs, and thought i was literally dying). Sooo, in the ER they gave me valium, and zofran. The zofran became my friend, as it was the only thing i could take for the nausea. The problem was, after taking it for a long time you become tolerant, and 4 mg, wasn't enough any more. So after seeking a second opinion about what was going on, I went to see my moms family doctor, so prescribed me paxil, and told me it was probably vertigo and anxiety from inner ear issues and told me to see an ENT. I went to the ER the next day after taking the paxil because i felt like i was on drugs. I suffered another anxiety attack in the hospital, and they forced me to sign myself into a psych unit for evaluation of a psychiatrist. at this point i am at a stand still wondering why these doctors aren't taking my medical condition seriously, i mean i was in bed everyday all day, i had lost 25 lbs, and couldn't function. I ended up being seen by an ENT in the psych unit who put me on a steroid pack of Medrol, allegra, nasonex, and ran extensive tests for allergies, which came back normal. They set up some appts. for me to see and ENT, and i went home. The days just seemed to get worse, and you wonder why someone with an ear problem could honestly function. (see the problem was, none of the hospital doctors thought my condition was severe enough to call an ENT and get me in sooner, so i was stuck at home to suffer)  So , the day came for me to go and have some tests done, and of course.... they canceled and had to resceduele with me. That day was the worst yet, i literally felt like a walking stomach flu. My mom took me back to her doctor to see if they might admit me in the hospital medically so i could be seen. He then decided, that this probably wasn't an inner ear issue after all, and that it may be neurological. So thanks to this fabulous doctor, he talked to one of his colleagues who doesn't take my insurance, who agreed to see me that Saturday. THANK GOD!!!! so Saturday i went to see him, and got some different thoughts about my situation. He asked every question there was, and when i mentioned i had been camping, the rash, and my iritis, and the vertigo and nausea, and anxiety, he was pretty convinced it might be Lyme disease, and ordered a blood test for it. He was also, listening to my heart and said it sounded like i might have a Mitrol valve prolapse, which is when my heart regurgitates blood back in, which isn't a medical emergency, but could also be from whatever disease i have running its course. I am now on another steroid pack, and zofran for nausea, and i got at least 20 tubes of blood taken for testing, and a 2d cardiogram echo test. It just seems like I was having good days, and bad days, and all the good days were becoming far apart until they didn't come anymore, and now, i do sometimes have good days, but then when i have bad days, i cant even get out of bed or function. I also am noticing new symptoms, like tingling in hands and feet, brain fogs, neurological symptoms, stomach issues, including indigestion severe, (which ive never had) and last night, it felt like i had a shot of Novocaine in my left side of my face. ALSO~~~ i know that i have never suffered anxiety in my life, and the only anxiety attacks that i suffer from, come from the disease, and symptoms. SOOOOO> if you lived long enough to read my story, lol, my question is----- does this sound familiar with anyone else s, diagnoses process, and had anyone had these symptoms, but their blood test came back normal, but were later diagnosed with LYME? Any information or support would be awesome!

[patsy10]

Welcome to MedHelp.  I did survive reading your story. LOL!  Well, I can say it sounds just like lyme.  All of it sounded like lyme to me but the iritis really stood out.  18 year olds just don't get things like this for no reason.

Most people get a negative lyme test.  Particularly the ELISA test.  It's practically worthless.  You have a lot of reasons to have a negative test.  1. The test is poor.  The western blot is better. 2.  Steroids.  They suppress the immune system which can alter the test.  In addition, steroids make lyme worse (If you  indeed have it)  because of the immune suppression.  3.  You had antibiotics.  All of these can lead to a false negative.  There is info. on testing in the health pages here that is very informative.

What state were you camping in?

[Ree4tu]

I am currently receiving treatment for Lyme based on my low CD57 and my clinical symptoms because my blood tests were normal. I have had the severe digestive problems and panic attacks that you describe along with rashes, numbness/tingling, muscle twitches, etc.  I also lost weight and could not get out of bed and was even hospitalized.

You need to seek treatment for Lyme as soon as possible. No more steroids, they do suppress the immune system and make Lyme worse because Lyme already suppresses the immune system.

Warmest Regards

[yrm8024]

I don't know the time of  those messages dilivered.
As a specialist I tell you what you are infected with. It a kind of super drug resistant Staphylococci. At the moment the first choice of medicine is two of them, nafcilin , or vancomicin, but the last one is more side-effective. you'd better ask the doctor to administrate you the medicine.

[patsy10]

Do you suppose others of us who post here could have the same?

[Stephen898]

Your situation is a very familiar experience with those trying to seek a diagnosis. I had every test you mention and more, probably because of a few more symptoms. Throw in stiff neck, palps, ears ringing and my symptoms are identical to yours I feel very confident in my diagnosis for the reason that I had a deer tick bite on my shoulder that was painful, swollen and discolored. It wasn't until I pulled off a little speck at the center of the area and looked at it with a magnify glass did I realize it was a deer tick. Mt tests were CDC positive. You may have very well been bitten and did not noticed it. Kankakee River is in a Lyme hot spot of the country. You mentioned the good day- bad day experience which is characteristic to Lyme. I wake up every morning, sit on the side of the bed until I figure out what kind of day it will be. However, I am very functional after 8mos of treatment but it is something you are aware of the entire day. I am not saying you have Lyme but I do believe your heading down the right road to get answers.

Keep us posted
Stephen

[wonko]

I agree with Stephen898's remarks.  I can't relate to all of your symptoms, but Lyme and co-infections hit everyone a bit differently.  I can relate to going through many doctors who couldn't tell me what was wrong.

I don't recall a tick bite ever, and I tested negative on the ELISA twice, delaying my diagnosis.

I think for anyone with disabling, multi-system symptoms that have eluded diagnosis through the regular means and well-done differential diagnosis should consider seeking a Lyme literate doctor.

[Krissy820]

Thanks so much for everyone that replied. I live in Will County IL, and from what ive heard thus far, the Midwest is a huge target zone for Lyme. I did camp all summer at the Kankakee River, but another thing I want to point out is that i live directly next to a highway, with high grasses, and we have a few fields (which have many deer), but anyways, I have alot of dogs, and cats that go up on the highway, and I also too have been back in the fields area on a quad before, so I may have contracted a tick bite then too. Like I said before, i dont recall ever being bitten, but I did have a really bad rash over the summer and I do have iritis, along with a million other issues. I was just curious if anyone had any advice of what i should suggest to my Neurologist next time i see him, because I want to make sure that I get diagnosed as soon as possible because its starting to affect my nervous system., heart. and GI tract. I'll keep you posted! Krissy

[patsy10]

wonko posted


"I think for anyone with disabling, multi-system symptoms that have eluded diagnosis through the regular means and well-done differential diagnosis should consider seeking a Lyme literate doctor".

Well stated and I concur.

Krissy820,

All of the ticks I have found have gotten on me from walking in tall grass and fields.  I pulled 3 off my scalp last summer at different times.  You don't see them.  I just incidentally felt a bump on my head each time.  I've been walking in the fields for over 20 years so I probably missed hundreds of them on me.

Have you been tested for lyme?   I may have missed that in your post.  I hope your doctor is receptive to lyme.  I have seen several neuro's and not found any terribly receptive to it.

[wonko]

credit where credit is due:  I was pretty much paraphrasing what Pam Weintraub (author, Cure Unknown) said in an NPR interview.