Hi Gracie's Mom,
Wow, your daughter has been through a lot, too. I feel sorry for these kids because they are missing out a lot on life. I wish I could take this from her and be sick with it myself. Afterall, I lived that part of my life, and it was fun, and I want her to have fun, too.
She is 16 years old, soon to be 17 in June. At the beginning, on 7/31/08, that evening her leg muscles got tighter and tighter, and it made it impossible for her to walk properly. She was still walking, though. Her then pediatrician thought she might have ehrlichiosis (which after our visit to Dr. K found out that she more than likely did) so she put her on 10 days of doxy. While on the doxy, she began to stand straighter and her knees didn't dip as far down when she walked. After the 10 days, the ped dr decided to take her off the doxy and said that if it were ehrlichiosis, then she would be 100% better. Even though she was showing signs of improvement, the witch would not refill the doxy. Well, within four days, she went to somewhat walking down to a squatting position. She never got her strength back after that.
There is a lot of story in between, but we did switch doctors to a new internist who did a western blot and saw that she did in fact have lyme. So she put her back on doxy. We made the appt with Dr. J and got in on a cancellation on 10/31/08. He thought she had bartonella at that time so he prescribed rifampin, zithromax, and plaquenil. But the tests came back saying that she had babesia instead. So she went on zithromax, plaquenil, and mepron along with artemisinin. We saw very tiny improvements, but were told that this is the way it goes -- slow improvement and on the meds for anywhere from six to 12 months for a full recovery. That was music to our ears.
A friend of mine is an occupational therapist at a well-known rehab facility in CT, and she wanted to come over to evaluate her. She did and found that Marissa was not walking at all (even though we were told to use a walker), that she could not stand or walk, so what she really needed was a wheelchair. Dr. J's office did not want us getting one for fear that she would give up on trying. But her "walk" wasn't anything close to a walk, in fact she was doing more harm to her body than anything else. So we went to the rehab facility and saw a physiatrist who wanted an EMG done to see why Marissa could walk on her knees perfectly straight, but could not stand on her feet at all.
I decided to take Dr. J's recommendation and see Dr. K. We were so happy that we did. His clinical diagnosis found that she in fact has bartonella, citing a case of a veterinarin from MA that he treated with the SAME awkward gait, and was back to walking within two weeks after treatment. Well, since Marissa is not walking at all, we know it is going to take longer. He took her off all meds and put her on minocycline and cipro. He wants to see her in one month, drew more blood, etc. Since she started this course of antibiotics, her muscles have become weaker (cannot walk on knees any more) and now does the combat crawl. It is getting worse and worse every step we take.
She had a period of bad herxes last week, and now seems better emotionally. We do go to physical therapy as we always have. But to answer your question (finally), she says she is very weak and that is why she can't stand.
I told Dr. K about the upset stomach, and he wants her to continue with the meds at all cost. Marissa gets more and more upset each time she takes her dosage. They said we can give her antacid, but no luck yet. Maybe this feeling is from the babesia? I don't know. I think I know a lot of what is going on until I read the posts and realize I don't know anything yet!
Did you daughter stop walking or have difficulty walking? I spoke to another person from this site and she told me she had bartonella and lost the ability to walk, too. She is walking again, thank God, but it took months before it got to that point. This scares me.
Between the two doctors I have faith that they will get her back to her old self. She has had ehrlichiosis, has babesia but Dr. K said she had enough treatment now to kill off that co-infection, and now has bartonella which is being treated along with the lyme. I don't know what he tested her for, but I hope he is testing to see if the babesia is still present. I would hate to leave that alone and find out that it is still going strong.
Oh, and to answer your other question, she said her stomach feels very "acidy". But today she had a craving for orange juice. Go figure!