posted
I'm brand new here. My son was diagnosed with lyme through a postive western blot three weeks ago. He is 9. He was put on Doxy, as he is allergic to cillins. Two weeks later, he had a Doxy allergic reaction. Now he's being treated with zithromax. He had four days of prednisone, which seemed to knock him for a loop - the pred was during the changeover to zithro to hopefully head off another allergic reaction.
I know that zithro is not a drug of choice for lyme. But at this point, do we have other choices? I'm considering changing doctors, as I really like my doctor who is treating me, but it would be a big step to leave his ped.
Rewind to me. I got sick in June with aches, pains, hot flashes and occasional chills and great fatigue. I also had floaters in my vision and major brain fog. July 4, I ended up in the ER with shakes, chills, dizziness. At that time they did an Elisa in the ER which came up negative. They refused to treat me for lyme and sent me home. I went to my regular doc who did a Western blot - that was also neg and they sent me on my merry way assuring me that I was perfectly healthy and that I'd feel better soon.
Well, I didn't. I was hot and flushed all the time and needed Advil just to get through the day because of joint and muscle aches and pains. (Yes, we've all had numerous deer tick bites this year - the little, itty bitty ones - never seen them so small as this year! We are on four acres in northwest jersey - full of deer...mice, and all God's critters.)
Dear hubby (who by the way, was also positive for lyme) puts in a call to his doc and gets an extra month of Amox out of him, which he gives to me. I take it and get all better (surprise surprise!)
Two weeks later, symptoms begin to creep back. Two weeks ago they hit with a bang again at night - shakes, chills, dizziness, hot, cold, etc. This time I find a lyme "sympathetic" doctor here in town who puts me on a stronger dose of amox regardless of my neg test, runs another western blot along with all the co-infection tests (all of which came up neg by the way). Within 36 hours my stomach is completely better and my leg pain is gone. I continue to get tired, but I'm two weeks into the antibiotic now and feeling much better.
I would love to hear from anyone whose child (or themselves) has antibiotic allergies and of any alternative treatments that have been successful. I'm scared going forward with antibiotics for him although I know it's necessary. I dont' know how long he's had the lyme. Leg pain had just started to appear when he tested postive, but I question if he's had it for quite a while. I have an appointment set up for both him and me with a holistic doctor and nutritionist next Thursday. He himself had lyme that would not go away and I'm hoping for supplements and a diet that will boost our immune systems. Meanwhile, we are juicing lots of veggies, making yogurt and kefir, etc. Just taking one day at a time.
I hate this disease. I hate the unknowns and the inconsistent and inaccurate tests. Meanwhile, my three year old has had frequent stomach aches and night time pain in one leg. He just had another blood test yesterday. This is a super healthy kid - never been on any medication or had any infections. Dunno if his ped will treat him without a positive blot, so he'll have to go to my doctor. blessings - kel
Posts: 6 | From Northwest NJ | Registered: Sep 2007
| IP: Logged |
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
As the mother of two young children (5 and 4) and a husband with Lyme
I am definitely feeling your pain.
Did I mention I also have Lyme?
Although my children have not been allergic to any antibiotics thus far in life,
Our LLMD chose to put them on zithromax,
Six months prior to adding in flagyl.
I am sure your pediatrician is wonderful, but your whole family really needs to find
A Lyme Literate Medical Doctor (LLMD). There are many things to consider including
But not limited to co-infections, different approaches, etc.
That is not to say your child's pediatrician can't be part of the process though.
Have you had a Western Blot done yet?
If not, I would recommend one through Igenex, in Ca. Not cheap, but worth having it done there.
They specialize only in Tick Borne Diseases.
Hang in there. There are many mother's on this board with children with Lyme.
Has the other half of your family been tested yet?
If they have been to your property, walked your property or played outside where you do,
Well.......It is a good idea to get them tested as well.
Sending you positive thoughts and prayers for you and your family.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
| IP: Logged |
posted
Yes, the rest of the kids have been tested.
How do I find a LLMD? How do I know if I have one or not? My new doctor seems to be willing to work without a positive Western blot. I've had three (one through my OB/GYN very early on with routine bloodwork, one through my old MD and most recently, one under my new MD) and they've all been neg. However, this most recent test was done after I had just finished a month of antibiotics and I know that can throw the results. I switched from my old doctor when he refused to treat me. (Like in 11 years I've ever asked him for medication for either me or my children - we've even declined their regular vaccines!)
I've had one visit with this new doctor who knows that Lyme is epidemic for this area and he said "Even if the western blot is negative, it doesn't mean it's not lyme" and he did test for a lot of other co-infections and warned me that the test would take a long time to get back. It did - it took about 10 days. We've lived here 9 years and have always pulled ticks off of all of us without incident. It seems to have hit all at once. Of course, if you have an infected deer living on your property, it stands to reason that you'll have lots of lymie ticks!
Problem is that my kids are under a state HMO so we are fairly restricted. DH and I are on our own insurance, which is broader.
Thanks for your reply. I would feel much more scared if I thought I was alone in this. Several of my children's friends have had lyme and I"m glad to have that support also. Posts: 6 | From Northwest NJ | Registered: Sep 2007
| IP: Logged |
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I have a similar insurance issue. My kids have been under state HMO since Katrina.
I pay out of pocket for them to see our LLMD.
It sounds like your doctor knows about Lyme.
What about co-infections, etc?
Is he a member of ILAD's.
It is possible since Lyme is endemic in your area he is well versed.
Does he believe in a quick cure?
BTW, I forgot to mention to make sure your son and whomever else is on antibiotics
To watch your diet and take probiotics for yeast over growth.
Hopefully someone will come on board soon who is from your area and can give some more specific
Directions to you. Hang in there.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
| IP: Logged |
Do I have to register? How can I use smilies? How do I use HTML and UBB Code? What are user titles? What are moderators? How can I change my registration profile? Are cookies used? How can I clear all cookies set on this board? What do those icons next to each topic mean? Can I edit my own posts? Can I use a signature? Can I attach files? Can I search? What are member ratings? What are private messages?
What is an Ignore List? What is a Buddy List? Are there any censor features? What do I do if I forget my login ID and/or password? Can I be notified by email if someone responds to my topic? What are Today's Active Topics? Can I search private forums? What are posting icons? How can users get in touch with me if I hide my email address? How can I report an inappropriate post? What is Recent Visitors? I just visited a forum or topic. Why am I not on the list of visitors? Why do I appear in more than one place at once? How do I take my name off the list of recent visitors? What do the numbers on the details page mean? How can I tell where a certain user was last seen?
IP: Logged |
I'm not quite sure. I imagine not - he put me on a month of amox and told me to call him once it was done if I wasn't feeling better or it returned. He did tell me that lyme is recurring and often needs to be retreated. Not sure why he didn't prescribe a longer dose though....but he sounds willing to continue treatment. (If not, I still have a month of my son's doxy that he couldn't take since he was allergic that I could fall back on.) This same doctor just put a friend of mine on a pic line for lyme, as the oral abx are not working for her. She also, has never tested a "full" positive her her symptoms have been so prounced that I guess he's pretty positive.
I'm not sure if he's a member ILAD's but these are very good questions and I am appreciative of any help! This is all pretty new to me!
Posts: 6 | From Northwest NJ | Registered: Sep 2007
| IP: Logged |
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Geneal has brought up good points and has had good answers.
Lyme often needs months of treatment, sometimes years. It is a complicated disease because of coinfections, etc. An ILADS doctor has a good understanding of the protocols used to treat Lyme.
I would go to www.ilads.org and read through the Dr. B guidelines and the ILADS guidelines. This will give you a thorough understanding of Lyme and the treatment for it.
What is a concern to me is that your doctor says it can be recurrent and require treatment again. LLMD's will treat until symptoms are gone for two months.
This is the kind of thing I would clarify with your doctor ... will he treat until you are symptom free and treat you for coinfections? Or does he give a standard round of treatment then see how you do?
Keep reading, you've come to the right place!
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
posted
My son was 9 when he was diagnosed in August 2005- he was put on IV Rocephin, which he ended up having an allergic reaction. He then went to IV Doxy- which worked great, however, when he was taken off IV and put on oral Doxy, he did not do very well, his stomach was a mess. He was then put on Bactrim, which was the dr's prefrence, however, he had an allergic reaction to that as well. He was then put on Rifamphin, Biaxin and Minocin, which has worked for him during the past year. Since Dustin had so many drug allergies it was a challenge but this last combo seems to be working. You can visit my son's website for the full story.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Frown]](frown.gif)
Now he's being treated with zithromax. He had four days of prednisone, which seemed to knock him for a loop - the pred was during the changeover to zithro to hopefully head off another allergic reaction.
![[Smile]](smile.gif)
Printer-friendly view of this topic