I noticed an unusual bite on my toddler last week and she is currently on a 2 week course of antibiotics to treat a suspected tick bite. She now has a rash at the site of the bite, which I believe to be an EM rash.
I'm concerned that she may require more antibiotics, given my reading through ILADS. I spoke with an LLMD (Dr. O in St. Paul) who indicated that 2 weeks of antibiotics would also be their standard of treatment in my daughter's situation.
I'm looking for feedback about what course of antibiotics had been given to other children in this situation and if 2 weeks should be adequate for my daughter?
I do not want her on unnecessary antibiotics. However, I'm also unsure I will find a doctor, even an LLMD, that will prescribe her more.
I've considered taking her to another LLMD (the clinic in Edina) but don't want to spend hundreds of dollars on an appointment only to discover that they won't give her more antibiotics either.
She isn't displaying any other symptoms of Lyme as far as I can tell. One morning, she seemed slightly shaky on her feet but that was prior to beginning antibiotics and hasn't returned.
She had 1 night with exceptionally poor sleep but it wasn't outside the normal range for her. She has taken a few extra long naps but that could be attributed to an unrelated late night trip to the ER this week (object lodged in nostril).
What would you do if this was your child? Any advice for me?
Posted by Lymetoo (Member # 743) on :
If Dr O is an LLMD, stay with her. Lyme cycles every 4-6 wks, so two weeks is not enough. The baby may feel better in two weeks, but that won't mean the Lyme is gone.
Posted by hopingandpraying (Member # 9256) on :
I already sent you the name of a good LLMD who most patients in MN go to. Take your daughter to see her a.s.a.p.! Time is of the essence with this disease.
When you call for an appointment, ask if they have any cancellations or a waiting list (call every day if you have to!). Patients have been able to get in earlier by doing this.
Based on Dr. B's Guidelines (=the "gold standard" for Lyme treatment), two weeks of abx is not enough.
[ 05-19-2017, 08:22 PM: Message edited by: hopingandpraying ]
Posted by Sammi (Member # 110) on :
It is good you posted. Be sure to get photos of your daughter's rash. It is important documentation. Place something near the rash, like a coin or ruler, before photographing to give it size definition. Also, document the date.
A bulls-eye rash is one symptom of Lyme disease. Your daughter should also be evaluated for co-infections. Many people who have Lyme are co-infected.
I agree with hoping and praying about Dr. Burrascano. You can read his guidelines at http://www.lymenet.org/BurrGuide200810.pdf Antibiotics and doses are listed starting on page 18. Hopefully your daughter can get in to see the Lyme doctor soon.
Be aware of the Jarish-Herxheimer Reaction. During treatment, your daughter may feel worse before feeling better. This is normal. Dr. B. discusses this reaction on page 17.
I agree with Lymetoo that two weeks is not long enough treatment. Do everything you can to get your daughter proper treatment now. Properly treated early infections are the easiest to cure. Keep us posted on her progress.
Posted by TF (Member # 14183) on :
You are doing great, mom. Keep it up. I agree with all that has been said above.
But, to give you a little hope, I want to tell you a little-known fact. There are 2 types of lyme disease: 1. the "rash only" form of lyme, and 2. the serious form of lyme that is capable of disseminating throughout the body.
The trouble is, you never know, when you get a bulls-eye, which type of lyme you have. So, you have to treat each bull's eye rash as if it is the serious form of lyme.
The good thing to know is that it may NOT be the serious form of lyme. It may be the form of lyme that makes a bull's eye rash and does nothing else.
In fact, it is because of the "rash only" type of lyme that the Infectious Diseases Society of American (IDSA) and most doctors believe that all your daughter needs for a tick bite is 2 weeks of antibiotics. If she has the "bull's eye rash only" type of lyme, she doesn't even need antibiotics! She needs nothing.
So, even if she has a 3-inch perfect bull's eye rash, I want you to know that there is still a possibility that she will not get sick at all. You can hope and pray for that possibility.
Here is an exerpt from the book "Cure Unknown" by Pam Weintraub in which she talks about this aspect of lyme disease:
Cure Unknown excerpts
p. 342 tells how Ben Luft, infectious disease specialist and Daniel Dykhuizen, evolutionary biologist, working together at Stony Brook went out into the field collecting ticks and analyzing Borrelia. A few years later, they had a graduate student travel the Eastern seaboard as far north as New Hampshire and south through the Carolinas collecting ticks infected with B. burgdorferi spirochetes.
p.343 "The Borrelia were duly isolated and compared for differences in their genes.
Eventually the researchers focused on twenty strains, each with a different version of the changeable OspC. Working with those twenty strains, Luft learned that six didn't infect humans and ten caused only a rash.
Only four of the twenty could leave the skin to invade other tissue like the heart and joints or the brain. The most virulent of the strains turned out to be the prototypical B31, the version of B. burgdorferi ultimately isolated by Burgdorfer and Barbour at the Rocky Mountain labs in 1981.
The implications are profound. One of the most important is that if just four strains of the twenty cause disseminated infection, then the roster of rash-based studies on the treatment of early Lyme disease, conducted from the 1980s to the present, would have to be reassessed.
Take a moment to ponder the simple math: It would be impossible to accept results based on the assumption that 100 percent of Lyme rashes can cause invasive disease when a significant percent cannot.
Some of the classic studies claim very high cure rates for early infection; yet if the causative strain were of the rash-only variety, then even orange juice would be a 'cure.' Are recommended treatment protocols truly curing most of those with early, invasive borreliosis? Or has noise from rash-only strains obscured less rosy results?" (p. 344)
Now, if you see any symptoms at all, any, then you know that this is not the rash-only (harmless) form of lyme. So, keep an eye out for anything and write it down so you don't forget it.
See pages 9-10 of the Burrascano Guidelines to see a list of lyme symptoms.
How big is the rash? If it is dime size, it most likely is just her body's reaction to the irritation of the tick bite. In other words, the tick was likely not infected with lyme at all.
My husband gets bitten by ticks at least 3 time in a summer. Each time, he gets a very red rash as big as a dime right around the bite. His dermatologist told us that this is simply irritation caused by the bite.
I believe she is right because my husband never gets any symptoms after these bites. And, the rash generally lasts at least 2 weeks.
Not all ticks carry disease.
You can look up your area of the country and find out what percentage of ticks carry disease. It varies from state to state. It can be as high as 60% carrying disease, or it can be much, much lower.
I truly hope that your child does not show any signs of sickness at all. Perhaps a walk-in clinic would be willing to give you 2 more weeks of meds.
If so, then after that, go to another one and tell the same story and get 2 more weeks for a total of 6 weeks.
It's a shame we have to resort to such methods, but we must in today's climate. And, it won't be expensive at all to visit a few walk-in clinics.