We live in central Maryland between Baltimore and Washington. Heather was apparently exposed to a tick in approximately the end of April of 2008, but had no rash. She is a competitive swimmer and started to complain that her muscles ached, and that her arms felt like lead weights while swimming. My wife and I knew that her coach was really working the kids hard during those two and a half hour swim practices, six days a week. We just shrugged it off. These complaints persisted from May-July. By the end of July the symptoms became more severe. We took her to her pediatrition to have her checked out. A complete blood chemistry as well as ELISA, EBV, and a few other virus tests were performed. The ELISA was negative and the EBV was positive. We were told that she had a severe case of mononucleosis. O.K. we thought, this will get better soon. But the symptoms got worse. About a month later, we insisted on another appointment with her doc. We told him that we think that it might be LD. He said that he doesn't think that it was LD. As we left his office, he told my wife that maybe Heather is just depressed and is looking for attention! He suggested that we seek psychiatric help for her! We left the doc's office that day knowing that we'd never be back.

Within a week we were in another pediatrician's office seeking another opinion. After examining our daughter and reviewing her records, this doc told us the same thing. By the beginning of September Heather started to have pins and needles in her extremeties ,neck and baches, sore soles, extreme fatigue, and deleriums in her sleep, Her whole right arm and shoulder is so sensitive that it causes excruciating pain if somebody touches it! There are many other symptoms as well.

By mid September, we were fortunate to get an appointment with Dr. L who is an LLMD in Towson Md. We were impressed to find out that she integrates alternative medicine with traditional medicine in her LD treatments. We had a two and a half hour office visit. At the end of it all, Dr. L stated her opinion was that it was LD as well as some possible confections. Igenex tested Western Blot, Babesia Microti and Duncani. Western Blot was inconclusive and Babesia was positive. Test results came back by Oct 1 and treatment was started immediately with azithromycin and Meprom. Strategy is to deal with coinfections first. Doc L also believes that Heather also has Bartonella. Food allergy test was alo performed and dairy and glutins have been removed from diet. We are stressing proper diet and nutritional support, as well as garlic and ionic silver.

Heather has hardly attened any classes so far this year and is very ill. It grieves us to watch her suffer so much. We have just started, and we have already spent about a $1000 out of our own pockets. The costs will escalate of course, when insurance refuses to pay.

We lost two months because of inept doctors. Heather is very sick, but it could be worse. At least she has not gone for years before treatment, as many on this forum have. We know that we will be on a long difficult road before there is a semblance of any "normal".

Don

Welcome - sorry for all that you have been through. Being an adult who had 1 supportive parent & 1 who Still wants to believe it is something else, I have to give you and your wife big *hugs*...it means so very much to have such awesome support.

I am so glad that you did catch this before it dragged on for years. I too was one hell of an athlete - and I lost it all - too many years untreated. But that's ok - just changed my plans.

I know it is hard for all of us to change our diets - but it really helps. Dont forget lots of fresh raw fruits and veggies if you can afford it - make shakes, juices, and slushies - it will really help!

azithromycin is a good strong abx...ha- sounds funny - but was one of my favorites - did well with it.

Just keep doing what you are doing, learn as much as you can, and dont ever tolerate the stupidity and ignorance of the docs...

You will get her better...

Feel free to PM with anything

Christine

I know what you are going through with your daughter. I have 2 daughters that were diagnosed with Lyme last March. I thought it would be a quick, easy, three weeks of antibiotics and be on with life! Boy, was I wrong! It was just the beginning of the struggle! Both of my daughters were VERY active. Both of them would play tennis 8-10 hours a day during the summer--and one of them would also run 5-6 miles a day--and was on the varsity cross country team as a freshman. This summer, one of my daughters would play a little tennis when she could. My other daughter (X-Country girl) didn't even play an hour of tennis the whole summer--and can barely walk a couple of blocks.

The daughter who is more sick has been out of school since last March. We have had to pare her 10th grade school classes down to just 1 class--that she is taking with a homebound service provider.

I am fortunate to have found a LLMD. It took until July, though (and several doctors telling me my girls "just needed counseling").

It is so hard to know how to help. Every now and then I'll see a "glimmer"--one of them will have more energy, or actually want to take the dog for a short walk.

I feel like I'm just plodding through--hoping that what I am doing for the girls is really helping--but, not totally convinced that it is???? Do you know what I mean?

I'll be praying for your daughter!

avaj

I am sooo sorry to hear of your children being sick. It is the worst to see a child suffer. My prayers go out to you and your families. It's good that you both are seeking treatment from an LLMD. But, don't let that keep you from continuing to read and research and look for answers. Your children can get better and get their lives back. It takes patience and perseverance. But, they can get better. I was infected for over ten years and I still recovered completely. I am symptom free and I will pray that happens for your children,too.

Please feel free to ask any questions, anytime. And, please keep us posted, when you have time.

Peace,

Connie

Your stories are so familiar, like many others here, it is shameful the attitude and ignorance among the medical community about LD. My son was mis-undiagnosed for 2 1/2 yrs. Won't bore you with all the details, conventional meds & treatment with an ID Dr only made him worse. We found a clinic that treats the whole person with conventional and alternative methods and he is doing well after 5 months of treatment. I was also diagnosed in June and doing well.

Don't ever give up on your kids! They can and will get well.

Keep researching! Good luck!

AnnF

well, Heather is lucky to have you two as parents! It's a shame that we can't take a doctor for what he says. They are so uneducated about this disease. I'm so glad you pushed for answers. I know the doc you're talking about, and she's a great choice! Heather is in great hands.

having the high EBV is pretty common in lyme patients. It's what triggered my lyme to become more active 11 years ago, I believe. I got really sick, I was in school to become a massage therapist, was in the ER, docs offices, none of them could tell me what was wrong, except "possibly a mutated strain of mono"....

You still caught this pretty quick, I'm sure she will have a full recovery. It does take time, patience is key. Just give her support and love like you are.

I'm glad you found us here. If there's anything I can do to help, please feel free to pm me.

warmest regards,

jaime

It breaks my heart to hear your story and watching a child having to go through this nightmare. I'm so sorry. I hope and pray it will be short since you found it early.

I'm in Maryland also, in Gaithersburg. If you know where that is. Where are you in Maryland? I was diagnosed 5 months ago after years of going to doctors to find out what was wrong.

I wanted to offer any help I can give since you seem to be not far away from me. Did you find a doctor you're happy with? Please feel free to PM me anytime.

My prayers are with you and your family. It kills me to hear children having to go through this horrible disease. But there's hope and lots of great people with answers and help. God is good.

My best,

Pam

jen