We have seen a hematologist because of her other blood disorders. I never really understood the HLADR4 issue and can't get anyone to explain it to me in a way that I understand it. Too many other...
Hi Karen, Thank you so much for your response. Ironically, that is the doctor we are seeing, too. We didn't have a very good appointment yesterday when we saw him. He upset my daughter very much by...
There is a possibility that my daughter may be allowed to start IV Ig and I was wondering if anyone here is on this treatment. The dr. told us that she would have to have signs of neuropathy to be...
WTNH Channel 8 is airing a segment on lyme disease tonight (4/1/09) at 11 p.m. You can also read about it afterwards I'm sure at www.wtnh.com ....
North Haven, Connecticut....
My daughter has been on oral meds for less than that and has major stomach issues from it. She has had very teeny, tiny improvements, and I finally asked her doctor at what time do we say it is...
Hi Julie -- it's Lisa for CT -- haven't called you in awhile, but you are always on my mind. My heart breaks for you. I remember your telling me that you have a to-do list on your fridge and it makes...
My daughter will be seeing him on a regular basis and he has been wonderful. He is very caring and concerned. During one of her IV treatments another patient told me that he is the best lyme...
Hello, We see Dr. J, too, for my 16 year old daughter. Our initial visit with him was on 10/31/08 at which time he presumed that she had bartonella along with the lyme. He did put her on rifampin...
Hi Gia, Yes, I know that the Rocephin only treats the lyme. We have to do this for now because she is so sensitive. She did test positive for both of the co-infections. She took Artemisinin in the...
Hello, My daughter was on a similar combo for Babesia: Zithromax, Plaquenil, Mepron, and her doctor also had her taking an herb called Artemisinin 200 mg 2x/day. She did well on this combo, however,...
My daughter had the lumber puncture done and it showed that she was perfectly healthy. She definitely had Lyme. I wouldn't put yourself through it. You could have some side effects from it, too. I...
Hi Kelly, Thank you for the encouraging words. We're not sure which route we are going to go with. I think if we start this week it will have to be with a regular IV like you mentioned. A PICC line...
Hi Tracey, We are in southern CT and won't be getting as much as you, but it is still a lot! She has an abdominal ultrasound this a.m. and the facility right up the street just called to say their...
She's 16 years old. So many strange things happen with this illness. She had Ehrlichiosis and she has Babesia and Bartonella along with the lyme. She also stopped walking in August 08, and we are...
My daughter broke out with a weird rash on her legs, neck, and scalp after being on minocycline for three weeks. It was very itchy. The doctor said if it was an allergic reaction it should have...
Thank you very much for all of this information. Today is a really down day because of the weather and the fact that she broke out with something during the week and we don't know what caused it. It...
Hello Everyone, My daughter's lyme neurologist is going to be starting her on IV Rocephin next week. She is a different case than most because she is positive for Factor V Leiden Mutation (elevated...
Thanks so much for your stories and advice. I am going to check with the dr to see about the protonix. My husband is on that for his stomach issues, and he said many times that she should probably be...
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....
Yes, she does take them twice daily, and it is getting harder to figure out how to space them out 12 hours apart. She would need to take the first dose in the a.m., then do her vitamins two to three...
Dear HopingtofindCure and seeingstars, Thank you. I am going to try this schedule. She has been on a potent probiotic from the naturopath, but I have been giving it to her in the afternoon between...
Thanks for the advice, Ticker. It really just started with the new meds. She was previously treating just the lyme and babesia and was taking zithromax, plaquenil, mepron, and artemisinin. The doctor...
Hello Everyone, Does anyone have a suggestion about what to take if your stomach is really upset from antibiotics? My daughter started taking minocycline and cipro a week ago and her stomach has been...
My daughter just found out last week that she has bartonella. She has already been treated for babesia, and had ehrlichiosis over the summer. The doctor had her stop the meds for the babesia and...
Hi Carrie, My daughter was taking the zithromax, mepron & artemisinin combo for babesia. Just an FYI -- if you suffer from panic/anxiety attacks, the anti-malarial drugs can cause hallucination...
Hi Prilla, I'm sorry you are not feeling well. It sounds like you make have co-infections along with the lyme that weren't addressed or taken care of with your antibiotics. Your symptoms sound a lot...
Hi Hope, I'm so sorry you have to experience these horrible attacks. My 16 year old daughter has had them right along with the lyme infection, but she also had ehrlichiosis, has babesia and...
Hi Julie, It went very good. Dr. K said he has seen her walk and he imitated it. He treated a veterinarian in MA that walked that way and she got better in two weeks. He said Marissa not only has...
Hi Marie -- I had difficulty sending you an email through the forum, so I did it separately from my personal email. I hope you got it! I'm glad to hear you are doing so well with your treatments....
Thank you Julie. I will do so and appreciate the offer. We "lymies" only have each other, and this forum is a God sent....
This is such good information to receive and it gives us hope. I will update you on Weds. with what Dr. K has to say for her. It is extremely tough to see a 16 year old girl who should be having the...
Anyone out there have a child that has lyme with another co-infection and your child is not able to stand or walk? If so, I would really like to hear from you. My 16 year old daughter's onset of lyme...
Thanks KeepHope! I will look at it. It's a blessing to have this website....
Thanks for the info Maureen. She has babesia, though, not bartonella. Would it still work the same on the babesia? I'm so new at this that I don't quite have it down yet which meds work with which...
Hello Everyone -- I read this thread with great interest and thanks for all that you have shared. My 16 year old daughter has had lyme since July 08 (severe onset of symptoms) and was diagnosed...
Dr. Jones is excellent and you will love him; however, he is hard to reach! If you don't have any luck with his phone number, his fax line is (203) 772-0682 and you can fax him a note and the nurse...
Hello, My daughter is taking Mepron with Artemisinin for Babesia. I found it at a local specialty pharmacy, but you can probably find it at a natural health food store. Her lyme specialist said it...
Hello and sorry to hear you are not feeling well. My daughter has lyme and babesia, and at the beginning she had a high fever of 103 followed by two weeks of a low grade fever, then it went away. Her...
A friend told me that plaquenil takes 12-16 weeks to start working. She said her rheumatoid doctor told her that. I was hoping to see results a lot sooner than that. My daughter is in her 10th week...
She is on Zithromax and Plaquenil as well. She started those on 10/31/08....
Hi Ticker, Yes, she started meds for babesiosis on 11/21/08. She is taking Mepron 750 mg. 2 tsp/day and the herb Artemisinin 200 mg 2x/day. Her doctor is the well-known pediatric lyme specialist,...
Thank you. I wish you continued success with your treatment. We are only 2 1/2 months into treatment. Some positives are coming out of it -- hair not falling out any more, menstral cycle back on...
Thank you. May I ask what meds you are taking and how long you have been on them?...
Thank you very much -- all of you. I was very worried that her kidneys might become damaged from the treatment/bacteria. The internist is going to check her organ functions for me, too. Also, her...
Just curious . . . anyone have symptoms in their bladder/kidney region (i.e. pain in bladder area, back, sometimes stabbing pain migrating down to groin area)? My 16 year old daughter has been having...
My daughter's doctor feels that herxing is a great sign meaning that the meds are working and the bacteria are being killed. I know it makes you feel worse, and that is the down side, but he feels it...
I am so happy that you were able to get in to see someone who recognizes lyme. It sounds like you are all set and in good hands. She may have some herxing because she switched meds, but it will pass....
Lyme really messed up my daughter's periods! She was having her period every two to three weeks. Now that she is on the antibiotics, they are coming every 28 days. The PMS is horrible -- intensifies...
The MA doctor said he would only do four to six weeks of IV treatment and that would be it. This is why I decided not to go with him. She needed the IV back when this first started and we couldn't...