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Congenital Lyme Treatment Begins

Posted Aug 28 2011 7:22pm
Recently, my LLMD (Lyme-literate M.D.) agreed to treat our 4-year old son. We had hoped to find a local pediatrician who was Lyme-literate, but they seem to be virtually non-existent in this state. We could travel North, but it really isn't in our budget. Thankfully, Dr. K agreed to help!

We met with Dr. K yesterday and he agreed it is either Lyme or a co-infection that is causing his symptoms. He is starting him on two antibiotics, Omnicef and Azithromycin, as well as Nystatin to help prevent yeast from the antibiotics. We already have him on a probiotic, which he takes twice a day, which should help prevent C-diff and other intestinal problems that can arise from antibiotics.

We have not told our son he has Lyme Disease. We hope to keep his life as normal as possible, for as long as possible. He is too young to truly understand and we do not want to scare him. However, he does know that he has bone pain and fatigue and we told him that Dr. K will be able to help him with that. He actually asked to start the medicine today!

He took his first dose this afternoon. He handled it well. I loaded up 1/2 Tsp of Cefdinir (generic form of Omnicef) and handed it to him. He drank it down and went back to his lunch. I held my breath the whole time. Perhaps that sounds silly, but there is still so much to learn about Congenital Lyme Disease. I have heard horror stories about children getting sicker during their Lyme treatment and not getting well again. He has been on antibiotics before and his experience was uneventful, but it was always the typical 10-day protocol for one thing or another. Because there is so much we don't know, treating a child is scary. But it is necessary. If we don't treat, we are just leaving the bacteria to multiply and attack the organs and systems of our son's body.

Dr. K explained that children don't typically herx as much because they are less toxic than adults. It is possible, but not usually to the degree that an adult would. In a few days, we will add in the Zithro. We meet back up with Dr. K in 4 weeks to discuss his progress and next steps.

On one hand, it was good to move forward with this important step...to be in action, helping our son fight the bacteria and hopefully ease his symptoms. Ultimately we hope to get him into remission for a long, long time. There is much research being done and we hope that there are major breakthroughs in treatment protocols that can eradicate this terrible disease. In the meantime, we will take it one day at a time. It's all we can do! We just hope and pray we are making the right choice for him and that all will go well.

We will still need to make a decision on how to handle our youngest, age 1. She is so young and is somewhat under weight. We need to tread carefully. Unfortunately Dr. K will not treat someone so young, so we will have to self-treat herbally (with recommendations from Lyme doctors we have conversed with) and wait until she is older and stronger, so that she can handle treatment. In the meantime, we will focus on building her up so that she can fight the bacteria on her own. We are a lot more prepared this time around because we know. So, we can do everything in our power to avoid steroids and large combo vaccinations, both of which are dangerous for Lymies. We can feed her foods that strengthen her immune system and avoid those that weaken it, like dairy, wheat and sugar. Most of all, we can fight for her by researching, educating others and demanding the best care for her, just as we will for our son.

Thank you for reading and for all of your support. We are grateful for you and are happy to know we are not alone on this journey.
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