My daughter has been suffering from vertigo for over a year. Every day, all day. After seeing 15 doctors, we finally have a diagnosis of Lyme disease. She apparently does not have many of the most common symptoms which is why they didn't push for this diagnosis. Original ELISA blood work testing was negative, but apparently that is common, and is inacurate at least 50% of the time.

A new internist who also specializes in Lyme disease sent her for a Western Blot test and it came back positive. We now think she may have had this for 3 years.

After this length of time, her treatment will be IV antibiotics for probably a month or more, but at least we now have a diagnosis.

She thinks she may be able to get her life back. She is 17, and she has been home schooled since November because of the severe vertigo. Missed all the fun stuff for her senior year.

These odd presentations for Lyme are apparently very common. So, if you have odd symptoms and no one can find a cause, do some research on Lyme and see if additional blood work may be in order.

I had mentioned her problems on this forum before, so I figured I just had to cheer about finally having a diagnosis!

Finally being able to get treatment!
FINALLY knowing.
I can only imagine the relief you must be feeling.

I am impressed by your determination.

Sue,
thats great news!! (that you finally know whats
wrong) Its scary; I live in NJ, and there does
seem to be a high incidence of Lymes here in
the Northeast. I never would have thought that
vertigo could be a symptom of Lymes. A few
people I know have suffered with vertigo. It
wouldn't hurt to be checked for Lymes disease.
Thanks for sharing this, it very well may help
others.

Sue,,I'm so glad that FINALLY" there is a correct diagnosis!!! I do know that Lyme disease is so hard to diagnos,,,and yes,,,loads and loads of antibiotics are needed. Your daughter will be fine,,,and thank god,,she will start to feel better,soon!!! Peace

Sue.. Wonderful news!!!! I too had Lyme 3 years ago. I was very very sick. And also had vertigo. Once in a while I still get it but not to bad. The antibiotics will work wonders, just make sure when they are done to put her on some Asadopholis ( you can get it at any health food store) to build up her good bacteria. I ended up with an terible UTI. The dr said that is very common being on antibiotics that long.

She will be fine, and will finally get her life back. Although don't expect her to jump up and run a mile it does take a little while to get your strength back up.

Best wishes.

Sue - I am so glad that you finally have some answers. I have read many of your posts that you mention your daughter's vertigo. When my daughter was a junior and senior in high school, she suffered from symptoms of pre-syncope and syncope. She also missed several days of school or was sent home early because of an episode. After many specialists, we finally found a wonderful dr. at Hopkins that diag. her with Neurally Mediated Hypotension. She is doing great now, very seldom has any symptoms, and she no longer worries about reoccuring episodes. When I first read about your daughter, I saw that you also live in MD and I was going to give you the drs. name in hopes of an answer. After reading more posts, I never saw a mention of fainting.

I'm so very happy for the both of you. I hope your daughter begins to feel better soon and hopefully she can have a fun filled summer. Please update us on her progress.

Dear Sue: Wow! I cannot begin to tell you fully enough how much I respect your advocacy for your beloved daughter. That you persevered and did not just accept things as they were makes you a prime example of why we should NEVER just look at all things as being caused by dementia or just accept MD's verdicts if our instincts are telling us different.

You must be so very relieved to have an answer and a treatment; I'll bet your daughter is also greatly relieved. Smiles all around.

Please write and let us know how she does - we are all hoping the best for her.

Thanks for your responses. It was her ENT surgeon who commented to me that we should keep searching for a cause. He knew doctors had given diagnoses - vestibular migraine, inner ear damage, vestibular hypofunction - but he just felt they were giving an answer without a true diagnosis. When she didn't respond to any of these treatments, it made sense to keep searching.

One doctor even said maybe it was psychological. Another doctor who has known her for 2 years (chiropractor who saw her at least twice a week for 2 years) broke out into laughter at that one, which made me feel good. He said she was the best-adjusted teenager he had ever met and no, keep looking, it was not psychological.

As with other things, after a while you do start to question yourself and wonder if maybe you are making things up. We never believed this with her because she even couldn't do the fun things. She was just constantly dizzy. Even when going to the beach or going to a party with friends.

I hope this helps somebody else to keep searching for a diagnosis if your gut tells you the doctors haven't hit on it yet. I will let you know how she does with the treatment.

Sure wish there was a fix for this AD thing.....

I'm very happy for your daughter and for you. What a relief to know finally what it is and treatment can be started. I hope for her speedy recovery and getting her life back. You're a good mom.

There was a interesting dynamic that I and my RN peers noticed within many MD's practice patterns.

At the acute hospital, (several of them), we noticed that if a diagnosis could not be found for a patient's condition; the MD's continued to seek and order test after test after test IF the patient was a male.

When the patient was a female and the diagnosis eluded them, the patient did not get as deep a workup. A psych consult was most often called in.

This rarely, (almost never), happened with the male patients.

I don't think that the MD's even realized their personal bias and would probably have been shocked to have it brought up to them.

Freud's been dead for eons, and we've come so far and yet, not far enough.

Sue,

I'm SO glad that you finally got the diagnosis! Thank-you for letting us know. And I'll be sure to read up about the symptoms of Lyme's Disease--I had a tick on me last week, and I didn't get a good look at it. I flushed it down!

Bev

Johanna, interesting take. I will say, out of 15 doctors, she was the only female. Coincidence? She was very thoughtful. Also the only one with enough confidence to call other doctors for more details. I was so very impressed with her. She pulled up several medical websites to research different aspects of her symptoms while we were there in the office.

I think we have a doctor we will keep!

And one more thing about Lyme Disease, not that this is the forum for it but...., it was already here (and Sue, Thank God you found out what was wrong and FINALLY got the correct diagnosis! That must have been a horrible time for you BUT! It is over and you are on your way to getting better).

My husband found a tick on him a few months back. When he removed it, he did so with his fingers, not thinking, and squeezed (squozed?) the little guys blood back into his own system. WRONG! Use a tweezers and then put the little guy in a bag and take him to your doctor.

They can send (if he still has the blood he sucked out of you in him (the tick that is)) it to a lab to have it tested for Lyme and then you know sooner if you need to get medication started. Unfortunately, the one my husband took didn't have enough "stuff" in him to test so now we sit and wait to see if he gets any symptoms.

So far nothing, but it can show up months after or right away. It is amazing with how prevalent it is in the Northeast that they really can't find it quicker and treat it better.

A friend of mine had (has) Lyme Disease and even after treatment has to keep taking medicine every once in a while due to ongoing symptoms that show up "whenever they want".

Well, enough ranting on it. I just wanted you all to know, if you do see the tick on you, try to remove it and take it, alive, to the doctor. Makes things, sometimes, better!

Again, happy your daughter is on her way to health again! All the best!

Beloved pets also like to bring these things home to us! Even in the NW !

drats i am faster than i should be today !

So glad u found the reason for her vertigo.

Sue, glad to hear that they found the answer to your daughter's problem. Hope the medicine works.

Dear Sue: Oh my. You know, I think this is probably not a coincidence. I am very happy in that you have this physician to assist your daughter. She really IS a keeper!

Hi Sue! Can you help me? I'm so happy to hear that are you on the right track with your daughter. I am 26 years old, and got lyme disease about 7 years ago. I found the bullseye rash and immediately went on antibiotics. The doctor told me I would be cured because I caught it so early. Now, for the past 5 years I have had extreme dizziness, completely interfering with work and life, requiring me to move back home with my parents several times, even relocating from across the country. I live in Northern Michigan, and can't find any doctors that know about Lyme. Can you refer me to a doctor that does? This is all so frustrating, and it seems that time is of the essence.

Thank you so much! It was so good to read your post.

Jeannette

We live in Maryland and my 15 yo daughter has had constant vertigo and nausea since 12/06. She also has a resting heart rate of 105 bpmand a mild constant headache.

She did see a Lyme doctor and was treated 6 months with Omnicef. She also had some treatment for Bartonella and Babesia but did not tolerate the drugs well, and only stayed on them about 2 months. She has not significantly improved. She is currently being treated for Migraine related vertigo with low dose amitriptyline.

I am wondering if she should have a course of iv antibiotics. Has your daughter done the iv antibiotics yet and did she improve?

Here is an email you can use to find a lyme-literate doctor, often abbreviated LLMD. Email them information about your location and they will email you back.
webmaster@LymeDiseaseAssociation.org

I also used this website for info
http://en.allexperts.com/q/Lyme-Disease-2911/indexExp_67406.htm

you will have to cut and paste for both

and here is a website that explains the Western Blot test for Lyme disease, because it is pretty complicated. From what I have read, the ELISA, the first test they run, is often inaccurate and the Western Blot is much more accurate

http://www.anapsid.org/lyme/wb.html

She was started on three oral antibiotics - Doxycycline, Flagyl and Ceftin. She is also on milk thistle for liver protection from the antibiotics and high-dose vitamins and probiotics to protect from yeast infections. So far we have not seen much improvement, but they told us it would probably take months.

We did get a new added diagnosis this week, that often accompanies the Lyme - POTS which stands for postural orthostatic tachycardia syndrome. Her pulse changes by 40 points between lying down and standing going from 68 to 118. We go to a cardiologist Thursday for a tilt table test. They tell me the treatment for this is a beta-blocker. Hopefully this will help with the dizziness and lightheadedness.

WE had tried Topamax for vestibular migraine and it did nothing for her. She doesn't have the headaches, though - just the vertigo and extreme fatigue. Guess it didn't work since her problem is really the Lyme. We also had gone to Johns Hopkins and they had diagnosed her with vestibular hypofunction and told her the way to get better was to overstimulate the system. In other words, do whatever makes you feel bad and your brain will learn to accept these things and gradually you will feel better. Well, not her. Eight months later she was feeling worse.

Well, I guess like with AD, it helps to know you aren't alone with these problems. She graduated from high school at the end of May - which was a big accomplishment because she was home taught the last 5 months. Now we are trying to decide whether she will be well enough in September to take classes on campus at the community college or to start with an on-line course.

She is so bored, but she doesn't feel well enough to do much of anything. Thanks heaven for books on tape. She really pushed herself yesterday for Fourth of July and is paying the price today. Oh well, at least she feels if it is Lyme disease, she may not feel well but she won't be making her disease worse by doing things. So when she can, she is trying to push herself.

Let me know if you have any luck finding doctors in your area. One thing I will warn you about. I have found that the LLMD doctors often do not take insurance. Our first visit was $475 and only $90 ended up being reimbursed by Blue Cross Blue Shield Care First. Now the visits run $140 and we get back $43. But, if it will make her better, it's more than worth it.

Good luck.

Hi Suegall, what a relief to finally know what you are dealing with. I am a home infusion nurse in New Hampshire. You would be suprised how many of the patients that I see have Lyme's disease (sometimes 3 to 4 a week). There is a doctor in New York that specializes in treating advanced Lyme. Very few doctors will even touch it. The CDC determined that there is no such thing as advanced Lyme's disease and accuse doctors who treat it of "milking" their patients. I can tell you from my own experience that there is in fact such a thing as advanced Lyme's disease. It occurs in people who were not initially correctly diagnosed or treated. These patients are usually started on IV Rocephin and then the more progressed cases go on to IV Rifampin (this drug is very tough on the liver and requires very close liver monitoring). Bernard Raxlen is the name of the MD in New York. He usually sees the patient for an initial consultation and then does phone follow up. He is skilled at treating the more advance symptoms. He is one of only a handful of doctors with Lyme expertise. Good luck to you. I know how very frustrating this can be. I'm pretty sure that we have some info at work about Lyme's disease. If it would be helpful you can email me and I will send it to you.
Fran

Fran, thanks so much for the info. We think my DD will probably need to go on IV infusion, but they are trying oral first. She has had 3 sinus surgeries, and her only symptom or problems each time was vertigo with vomiting. The theory now is that it wasn't the surgery that made her better but rather the IV Rocephin at the time of surgery that made the Lyme dormant for a few months but didn't kill it completely. So we are trying oral with the understanding that we may be going the IV route in a month or so.

The doctor we are seeing is a partner of Dr. Kenneth Singleton who has written a book on Lyme and apparently is pretty well known throughout the Lyme world. I had a neurologist recently tell me that there is no controversy in Lyme diagnosis or treatment. Guess we won't be going back to him. What a stupid statement! It is totally controversial.

My e-mail is sue.gallagher@comcast.net and I would appreciate any info you can send me. My daughter is a bit apprehensive about the IV, but she is willing to try anything to get her life back.

Thanks for responding so promptly. The Lyme doctor we used is Lyme literate and did several weeks of training with Dr Burrascano and Dr Ray Charles the peds Lyme doctor in CT.

My daughter also tried Topamax this winter which did not help. I forgot to mention that she also did use Tindazole which is like Flagel to kill the cyst form of Lyme.

My daughter was out of school 3 months the winter of 2007 and did have some improvement during the summer of 2007. She went downhill again this winter starting in Nov. and was out of school 5 months. She has had some improvement again this summer. She got worse while on oral antibiotics this winter. We took her off them mid Dec. and she has stayed of them. She did show the improvement this summer while off antibiotics. She does summer swimming which seems to help. I guess it is a form of vesticular rehab. Luckily she has never had trouble with fatigue which allows her to be able to swim. She sometimes has to cut the practice short due to vertigo and cannot do the flip turns. She had the flumist vaccine and Guardasil vaccine last Oct. and I am not sure that one of them was not partially responsible for her relapse during this past winter. She usually does worse if she gets any type of infection.

It is all very confusing. I know she has had Lyme, I just do not know how much her current problems are related to active infection. Her periods of relative improvement do not appear to be related to antibiotic use. I am still considering the iv appproach since most doctors seem to feel you need that to help with neuro Lyme.

My husband, my son, my dog and I all test positive for Lyme and various coinfections. My husband had brain fog and arthritis type symptoms. Ceftin did not help him alot. He did show marked improvement with Ketek which has been found to cause liver damage in some patients and very few doctors will use it anymore. Biaxin is a similar type drug that they use more now.

My son had chronic hives and mild fatigue. He tested positive for Babesia along will Lyme and Bartonella. He did well on Omnicef(like Ceftin), Mepron,and Zithromax for 6 months. He no longer has hives and is fine.

I had problems with vertigo which was different than my daughter's vertgo. My vertigo occurred very acutely and occurred later in the day and was very bad when I turned my head. My daughter feels like the room is spinning all the time. She feels this way even when she lies down and holds her head still. Her vertigo is worse in the morning. I also have a very atypical trigeminal neurlagia which causes constant right sided gum and tooth pain. I was on antibiotics for 2 years with no improvement in the neuralgia. I am not sure if the antibiotics helped my vertigo or if my brain adapted. I only have very mild vertigo at this time.

I did 2 months of iv rocephin and it was not bad at all. Most people have to have a PICC line placed as an outpatient at a hospital. This allows you to get the antibiotic with out having to be struck with a needle each time. They can also draw blood through it. A visiting nurse comes to your house to occationally change the bandage, check the line, and draw blood. The placement of the line is not bad, but could be a little scary for a teenager if they are afraid of needles. The line is not hard to use. The only part that is annoying is wrapping it to take a shower. I also preferred to wear shirts with longer sleeves so no one would see the port of the line; it was in my upper inner arm. I would be happy to answer any questions you have about the iv route.

Thanks so much for the info. She is not afraid of needles at all. She has had three sinus surgeries, two knee surgeries, and three ankle surgeries, so she is pretty used to being stuck by things. I think she signed on for the one-of-each plan. Oh well.

She has the vertigo as you describe your daughter's. She can't read because she says the words seem to "swim" on the page - move from side to side. She feels worse in the morning. She has a terrible problem with motion sickness whenever we are in a car for more than 15 minutes or so. She has a real problem with fatigue, though. I am surprised your daughter can swim. I would have thought the motion of the arms would bother her. Glad she has something she can do that she enjoys.

She tested negative for coinfections, and that is another reason to doctor decided to try oral antibiotics first.

What is the name of the doctor you have been seeing, and where abouts in Maryland are you located? We are in Harford County.