To mmmom - Lyme Disease Message Board

ticker · 11-20-2003, 12:52 PM

mmmom, I am sorry your daughter is so sick, I know it is heartbreaking.

Is she seeing a Lyme knowledgeable pediatrician? Has she been tested for all of the co-infections that ticks can transmit--Babesiosis, Ehrlichiosis HME & HGE, and Bartonella? This is very important because many people who have Lyme are co-infected. Many Lyme doctors believe the co-infections need to be treated first before Lyme treatment is effective.

mmmom · 11-21-2003, 10:52 AM

Hello!
Thanks for your concern! We are seeing a specialist in Charlotte. Although he usually does not see children, I was able to get an appointment through a friend. Our pediatricain has researched their clinic thouroghly and highly recommends their success. He has also agreed to work with them, so that we have a local contact. They have done about 9 vials of blood and some urine testing. They arae still waiting on the results (seems like an eternity) but we probably will not get the results until December. They did test for all the co-infections. They feel however, that she has so many symptoms that she will probably need to proceed with the Lyme diagnosis anyway regardless of the testing. Her pediatrician agrees with them so far. So for now we are on oral antibiotics, fighting yeast infection in the mouth, etc. Waiting for results and for testing to make final decisions. It is hard to sit and wait, but at least she has a few good hours now and then! WE just try to stay positive and gather information that will help her!
Do you know how different the IV therapy is from the orals? Such as side effects and such? She had a couple of bad weeks at the onset of orals, but is starting to feel a little better in her third week.
Thanks for all you help!

ticker · 11-21-2003, 11:33 AM

mmmom, I am happy to help. Is your daughter seeing Dr. J.J. in Charlotte? If so, he does come highly recommended. There is an excellent Lyme pediatrician in New Haven, CT (the only one in the country that I know of) who has helped children from all over. His name is Dr. Charles Ray Jones. Maybe he could consult with one or both of these doctors regarding your daughter's treatment, if necessary.

I am glad her treatment has started. No Lyme test is completely reliable and a negative test does not rule it out. Keep staying positive, she is on her way to better days.

I believe that oral antibiotics are often used first because they are less expensive, easier to take, and less risky. IVs are often used because orals are not effective, the person has been sick for a long time or they have serious neurological problems. Unfortunately there is no one best antibiotic for everyone, and it can be a trial and error process to find the best one(s) for each case.

When getting treated for tickborne infections, it is normal to feel worse before feeling better. Are you aware of the Jarisch-Herxheimer Reaction (herx)? Often, when people with Lyme take antibiotics their symtpoms may become worse or they may get new ones. The antibiotics are killing the bacteria which release toxins and make the person feel worse. This can be very scary, but it is a good sign that the antibiotics are working. There is no set time that the herx occurs, but some people experience them every four weeks or so.

mmmom · 11-21-2003, 07:58 PM

Yes, we are seeing Dr. Jemsek. I have heard of the herx and Dr. J's office did confirm that they felt that was going on during the first couple of weeks. Are the herx worse with IV? I am trying to get a feel for how things are going to go and how long some improvement of neuro symptoms take. I am working with her school to provide her with whatever she needs and they will, I just don't know what to expect this early on. Thanks!

ticker · 11-22-2003, 01:13 PM

Herxes can be worse on IV, but because tickborne illnesses affect each person individually there is no real way to predict.

From what I understand, neuro symptoms can take longer to eradicate. I have heard that children seem to improve quicker than adults, so this is good news for your daughter.

It is good that her school is willing to be flexible.