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11/15/2009 02:29 PM

Teenage daughter sick with Lyme-misdiagnosed?

geneotech
Posts: 16
Member

I believe my daughter does indeed have Lyme Disease. Everything I have read convinces me of this. She has had many debilitating symptoms during the past 3 years that all started with a virus of some kind that was never diagnosed. She was just the sickest I'd ever seen a person be. Before that, she was hardly ever even sick with a cold.

Her ENT doctor actually had her tested for Lyme because of the worse dizziness she was having to the point of vertigo at times and her ears tested out well.

The tests came back showing a negative IgG with only one band showing positive-41. Ok, but the IgM tested positive showing bands 39 and 41 positive. Her IgG/IgM Ab showed 1.05 and antinuclear antibodies direct showed 100. The infectious disease doctor she was referred to after that told her it was a false positive and that he didn't believe she had it although she had many symptoms that people with Lyme have.

She had been diagnosed by a cardiologist who knew this infectious disease doctor as having orthostatic intolerance or POTS previous to this. He still believes she has that and seems to believe his doctor friend is very literate in Lyme.

ID doctor seemed to make his diagnosis on the fact that she couldn't remember having a bulls-eye rash, although thinking back, could have been on her head or another unnoticable part of her body not normally seen. But I've also read that it doesn't always show up. She did have some kind of rash after first being sick but said it felt like little bugs running under her skin.

Also we live in eastern NC and not suppose to be Lyme around here, but we have all kinds of deer in our area. She also spent some time at her aunt's house in Indiana about 5 years ago and her sister took some ticks off of her then.

But my question is this: Why would she show up band 39 which I've read is very specific to Lyme and also show a high antibody count to it if she doesn't have Lyme?

She keeps getting sicker and sicker and has fewer "well" days than sick ones. And I use the term well very loosely. Even on those days now, she can barely get through the day at school. She is in her first year of high school and has missed about 5 weeks of the first semester and the school won't help her without a definitive diagnosis to qualify her for a 504 plan. Even the cardiologist's letter about the POTS stating that she may need some modification of her school year due to illness doesn't seem to hold any weight.

I just want someone to find out what's wrong with her. The ENT did prescribe 3 weeks of antibiotics before she saw the ID doctor and he said she'd already been treated so that was all he was going to do. NO retesting or anything. She's had no antibiotics of any kind since then until now when her primary care doctor put her on 2 weeks of amoxicillin due to a nasty sinus infection she's had for a couple of weeks now.

But she constantly suffers with very low energy even though I pump her full of various vitamins that should help, she actually gets to where she can't get out of bed and when she does can barely put one foot in front of the other, she has constant headaches that they only found a nonspecific lesion on her right frontal lobe for with an MRI about 3 years ago when she'd had a headache that wouldn't go away with any medication, even IV DHE treatment. It hasn't changed but still there on recent MRI's.

She continually is dizzy with no inner ear problems. She was diagnosed with the orthostatic intolerance a little over a year ago and on medication for that that doesn't really help now. She has a continual low grade temp of about 99.6, up and down, seldom ever actually reaching 100.

Her ANA ratio when first taken about 2 years ago when she was having severe pain in her knees was 1:640 but tested negative to anything specific. Lyme was not one of those things tested against. This last April when she saw another rheumatologist, her ANA ratio was lower, 1:80, but still positive and again negative to anything except histones, which implied a drug related lupus. But she hasn't ever been on any medications that generally cause that. The rheumatologist didn't think she had lupus itself.

About a month before she was in the hospital to get a spinal tap done to test for several things, one I think being Lyme, she had another blood ANA done showing 1:640 again and again showing histone sensitivity but no drugs being taken to induce that.

She has all over body pain specific to the type that people with fibromyalgia experience and has been suggested that she might have that and or chronic fatigue syndrome. They actually put her on Lyrica in the hospital to try to help, although it's not really helping much.

BTW, the rheumatologist that she saw in May never got back with us so she is being referred to another one, as well as I'm changing her to an adolescent pediatrician who will better be able to coordinate her health care with the other specialists. But they want her to have another Lyme test done.

Another question: How long after she is off these two weeks of antibiotics should she wait to have more Lyme tests done? I just don't want them to skew the test results.

She's also having lots of spaciness, more lately and has had a video EEG as well as a regular EEG, but nothing shows up as far as it being related to seizure activity. She can be in the middle of a sentence and just stop talking for a few minutes and go into a daze before popping out of it. Then she can't remember what she was talking about and I have to remind her. It takes her a bit but sometimes she can continue. She has so much brain fog and this just was never like her.

She just turned 15 but seems more like she's 75. Oh, and she's had all the typical "see a psychiatrist" recommendations too. She's been about the most balanced kid you could imagine otherwise. If you can answer any of the above questions, I'd appreciate any ideas. Sorry for the long posting, but felt it necessary to give background for questions.

I tried to reformat this a bit for easier understanding, but forgive me that it's still too long. Thank you for pointing out the difficulty in reading. My daughter also has problems reading and comprehending. I will do better in other posts.

Thank you,

Carrie in NC

Post edited by: geneotech, at: 11/15/2009 04:41 PM

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11/15/2009 02:45 PM
lydian
lydian  
Posts: 538
Member

Sad It sounds awful what your daughter has and is going through. As I tell all my friends and family, you need to be proactive and well informed; it sounds like you're doing that...a lot of info to consume.

It sounds like you have ruled out a lot of other illnesses. Lyme tests are very inaccurate and if you have had antibiotics in the past, many times, it will affect the tests and in most cases it will be negative. Lyme is not diagnosed with the bloodtest alone, it also takes into consideration the symptoms. Igenex labs is usually the most accurate in detecting Lyme and its coinfections. Coinfections are usually overlooked and not tested for...since you have not mentioned that I'm assuming those weren't done.

I would suggest that you go to a LLMD, a Lyme Literate Medical Doctor, since Lyme is very complicated and most docs don't know enough about it. You may send a PM to cmany or Jaime1978 for a list in your area; you may want to include how far you're willing to travel also. I say that, because most of us have to travel to find an LLMD. That would probably be a good start. Gathering all your test results also makes it easier for the LLMD.

I wish you all the best.

P.S. Us Lymies have a difficult time reading so you may want to break up your text into paragraphs more.


11/15/2009 03:21 PM
geneotech
Posts: 16
Member

Thank you for your reply to my post and for the info. Sorry about the rambling on. I should have broken it up as you say because my daughter also has trouble reading and comprehending to the point that she has to read and reread sometimes several times to get something. But I will try to do that next time for sure and thank you for that advice also.

As far as traveling is concerned, we could do that if needed, but our insurance is another thing. We are retired military and can't afford anything outside of Tricare. Don't know what they are willing to pay for treatment wise. And her dad was out of work for 8 months, so we're still trying to play catchup charging up credit cards, etc. But whatever we have to do to help our daughter, we'll make a way somehow.

Thanks again and just feels good to have a group to talk to that understands.

Carrie in NC


11/15/2009 03:52 PM
toothfairy55
toothfairy55  
Posts: 3856
Senior Member

Hi Carrie,

Im really sorry you and your family have to go thru this.

First let me say the the infectious disease doctor she saw is typical of most ID doctors. they are arrogant and just plain wrong about the 3 weeks being enough.

Run dont walk and get her to an LLMD.

Also insist on co-infection testing. Headaches are a big symptom of Bartonella. Do some research on that if your not familiar.

It can cause headaches, feet to hurt, mood changes and psychiatric symptoms.

Lyme is everywhere... I get so steamed when I hear doctors say they dont have it in their state. It's Everywhere!!!

Please PM Jaime or Christine and get a list of LLMD's. Most dont take insurance anyway. Im lucky, I pay the doctor and the ins. reimburses me. Good luck and keep us informed.

Some things you can start to do before she sees a dr. is dietary changes and detoxing.

Most LLMD's will tell you to give up gluten, dairy (except yogurt) and sugar. Its a tough nut but she will feel somewhat better off those things.

Detoxing is drinking half her weight in water, 2-3 glasses with lemon or lime. Also epsom salt baths. I do mine before bed. it helps me to sleep


11/15/2009 04:50 PM
geneotech
Posts: 16
Member

Carol, I will send this again as I don't know if it went through. But thank you for your reply and all the great advice and information. I will try the detox, diet changes and epsom salts baths for her. Anything to help her even a little is alot right now. I will check up on what you suggested as well. BTW, I changed the format a little with my original posting. Hopefully it will be easier on the eyes. Still too long, but too much to inform to cut anything out with first posting.

Thanks again, Carrie in NC


11/15/2009 04:51 PM
geneotech
Posts: 16
Member

Carol, I just got what PM is. Private Message, so no need to let me know. Saw it beside message area.

Carrie


11/15/2009 05:03 PM
toothfairy55
toothfairy55  
Posts: 3856
Senior Member

It took me a while to learn to navigate this site too. If you get a PM you want to keep like say you have a list of docs sent to you. You can archive it so it soesnt disappear.

They do go away with time unless you do that


11/15/2009 07:52 PM
avaj
avaj  
Posts: 26
Member

Carrie,

I'm so sorry you're having to deal with this!

I have 2 teenage daughters with Lyme. It's hard enough to deal with the medical community that says it's all in their heads--and that it must be caused by something going on at home or at school, but, then you add the difficulty of dealing with the school district! It's just awful!!!! (It took about 1 1/2 years for our school district to come around)

I, too, would say you need to get to a LLMD. That is where we found someone who would actually listen to us, and believed that something was actually wrong. One of my daughters ANA Titers was 1:1280--and the our general practitioner said that sometimes, people's ANA titers run a little high. That is more than a "little high"!Blink

Anyway, I understand what you're going through as the parent of a teen with chronic illness. If you need someone to vent to feel free to contact me--I may not have a lot of advice--but, I sure have a lot of understanding--I've been there--and am still there.

Blessings to you and yours,

Ava


11/15/2009 09:20 PM
lymeaway77
lymeaway77  
Posts: 45
Member

Hi Carrie, so sorry to hear about your daughter. The best thing you can do for your daughter is keep on fighting for her like you've been. I don't know what I would of done if my Mom hadn't done the same all these years.

I agree as well with everyone else to get a LLMD. Sometimes infectious disease specialists are the worse cause their so close-minded. My migraines were as severe as your daughters, every day for 15 yrs, until I got treatment. I still get them but treatment has been a huge help, I get breaks now. Its a wonderful feeling. Mine they say were severe due to the co-infections Bartenella and Babesia. You really should have your daughter tested for them. That can make a huge difference in her treatment.

I too had gotten diagnosed with POTS, no inner ear problems, of course and it ended up being the Lyme. I had trouble in school with concentration, sleepiness, everything. Spent more time in the nurses lounge than I did in class. I was eventually home-schooled 7-thru 12th. At that time I wasn't aware I had lyme and my mom had just filed under migraines because thats what I was being treated for. I have to tell you though even after filing my school made it difficult for my parents and I. Wouldn't let me attend my prom or even football games if I had a good day, they said technically I wasn't part of the school, although I probably worked even harder than others because I was sick. Its hard when no one understands. If you ever need to vent or your daugther wants to talk to someone who can relate I'm a good listenerSmile

Good luck and please let us know how she's doing.


11/15/2009 10:13 PM
waxby
waxbyPosts: 4811
VIP Member

Hello Carrie in NC.I don't live in NC but it's where I picked up my Freak Lyme tick-just south of Wilmington NC when visiting from Delaware. Good God almighty Carrie in NC' your description sounds as common as a dog peeing on a fire hydrant.

Do you know why dogs eat so fast? They don't want to be late for their nap and you don't want to be late getting to a LLMD. Don't let em chase your tail any longer! Listen to toothy and run don't walk to a LLMD!

And your Drs.stock answers are even more common than a cat giving herself a lickin and ignoring you in the process. Run Forest Run away from those educated idiots and don't look back! Oh and in the dictionary under Lyme Disease you'll find geneotech's post #4. And of course I'm no frightened, ignorant, educated idiot Dr, so don't take my word for any of this. And you can tell em all to just Kiss My Lyme! Go get em Sister Woman! Seeya. I don't wanna be late for my nap either. I'm gonna go cuddle in my straight jacket. Then give myself a bath and ignore everybody ...

Post edited by: waxby, at: 01/12/2012 07:28 AM

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