Discussion in 'Fibromyalgia Main Forum' started by redsox10, Aug 5, 2008.
I have been thinking of you. How did things go with Dr. J?
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We just saw Dr/J on Monday. Liz had a good appointment. She is starting back on Mepron. We love Dr. J. He is wonderful. Does your other child have symptoms?
What meds are your kids taking? When do you go back to see Dr. J?
I did see the entire documentary. It is well done.
We see Dr. H again in September.
Healing thoughts to all of you.
My daughter is on IV Doxycycline, Plaquinal, Rifampin and now Mepron. I am on Omnicef, Plaq, and zithromax.
When do you go back ot Dr. Jones? What dose mino is your daughter on? My daughter has had the sore throats on and off wiht the babs.
[This Message was Edited on 08/06/2008]
instead of on the longer thread.
My kids saw Dr. Jones last year, a year ago this coming week actually. We were going to go back in Feb, but they seemed to be doing well. Now we are starting to see problems again. Fortunately, my LLMD just spent a week with him learning how he treats kids so see is going to help us.
I am sorry about your kids. I know how challenging it is to have a household dealing with this illness which is so poorly understood and much maligned.
Many of the top LLMD's see overwhelming fatigue associated with Babesia. I think that both Babesia and Bartonella are playing a huge factor in CFIDS and Fibromyalgia.
I am being treated for both at this time and am going to do a combination of Cipro(pediatric dose), Zithromax, and Mepron. There are some days that I want to crawl around like your daughter does. I get this rocking sensation back on forth, up and down, side to side. It is like I am on a boat. Yesterday was particularly bad... I had to take an Antivert first thing in the a.m.
Hang in there, it will get better, and Yes, Dr. Jones is a saint. I really wish we could go back and see him. We always help out when he needs it since he has helped so many thousands of children get their lives back.
No, I'm not on Lymenet. I read stuff there but don't post. I am on Healingwell, which is a great site. More of a tight knit bunch, but with all the same info and the same quick pace.
I got sick first, and it wasn't until we figured out what was wrong with me that we pieced together some of the issues the kids and my husband were having.
Dr. Jones thinks my kids exposure was through the environment, not congenitally. He said that babies who are born with Lyme are really quite sick.
We have a dog, we live in the woods ( in MN, highly endemic- actually highest rates of Lyme and co's outside the northeast ), we hike, camp etc.,
Redsox- you must be in MA. I have a lot of family there... Lyme central...
My daughter has a mediport. My son had a PICC and Liz decided to go with the port. So glad she did. She can swim when she is deaccessed. Our insurance is no linger paying for her IV's but she really needs them. She has adjusted to life with IV's. We stopped her IV for vacation b/c of the sun issues. It was so nice to have a break. After week 2 she went downhill. By the end of week 3 she was so ill. Day 4 back on the Doxy she is back to where she was. How scary this is her lifeline right now.
My daughter was getting better on orals and in Oct. 06 she crashed and was at her worse. That is when more aggressive approach had to start. She is on rifampin for bart.
I am on zithro,plaq, for both Lyme and bart. The Doxy helped me more than the Omnicef but I can not be on it in the summer.
My son was off all meds and non bicillin injections and a bunch of orals. He was of all meds a year ago but relapsed.
Both my kids are on a detox now. My daughter is also on a low dose of cotef and adrenal supplements. We all take 3 different probiotics.
We see Dr. H in Sept and Dr. J in Oct.
Frango.. I am in upstate NY. My husband has always loved the Red Sox and we all are now fans.
up for cathy/frango
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