posted
My two year old had a bullseye on September 9 so he went on amoxicillin for two weeks even though the test was negative. He started to get hives everywhere and joint pain so I told the doctor to continue treatment for another two weeks. We then realized that he is allergic to amoxicillin and as soon as we stopped treatment and gave him Benadryl, the hives, swelling and joint pain went away in 24 hours.
We also realized that he took amoxycillin two weeks before the initial bullseye for a sinus infection that he and his sister both had, and the recent amoxicillin rashes look similar. We are awaiting the results of another lyme test and pray that it was all the amoxicillin. If it is lyme, we will need to quickly treat with drugs not in the penicillin family.
Has anyone heard of a similar situation?
Thank you in advance for thoughts and advice. David
Posts: 21 | From NYC | Registered: Sep 2015
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posted
Sometimes a bullseye will show up on a repeated exposure.. in other words, he may have been bitten by a tick before but didn't have a rash.
The second bite can bring out the bullseye.
But I haven't heard of amoxicillin causing a bullseye rash.
I doubt the new Lyme test will be definitive because it is too early to test. (I know.. it's all crazy when it comes to Lyme.)
So .. don't be shocked if the second test comes back negative.
Personally, I would want my child to be tested again later at the 6 wk point. If he is allergic to amoxy, I'm not sure what you can try since he is so young. He's too young for doxycycline.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96220 | From Texas | Registered: Feb 2001
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
You said he took the Amox two weeks before the bullseye developed? Then it's NOT an allergic reaction. Two weeks is way too long for an allergic reaction to develop.
I would continue treating it as Lyme.
I hope you know that Lyme testing is notoriously inaccurate.
Posts: 1737 | From Virginia | Registered: Aug 2011
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We know that the second wave of rashes were from the amoxicillin and watched as they faded leaving a few bullseye looking marks similar to the first rash. We are sure because Benadryl make the rashes go away last night and the morning dose of amoxicillin brought new rashes immediately after swallowing. Our family doctor is glad we figured out the amoxicillin allergy but wants us to test a few more times for lyme in the next few weeks.
The family doctor is about 65 and said that she can ask other doctors for alternative treatments to amoxicillin, if necessary (we are glad she is reaching out). The question is whether to treat proactively if the current test is negative as he already had amoxicillin for about 18 days.
How long after infection is there a high probability of successful treatment with antibiotics? A doctor in Long Island tic country said within six months is very treatable. Does this sound accurate?
WPinVA - thank you very much for your reply. There is much information on the internet saying that amoxicillin allergies sometimes happen 10 to 14 days after treatment is started.
And the most common allergies cause hives, swelling and joint pain. The clincher was Benadryl cleared the symptoms last night, which came right back after this morning's amoxicillin to again disappear shortly after taking Benadryl.
What gives us some hope is that as the amoxicillin hives lessened, a few red blotches faded in the middle leaving an outer circle with a small dot in the middle. This is just like his first rash, also after going through an amoxicillin treatment.
The good news is that he will be tested multiple more times for lyme and the doctor is being diligent. How long is lyme in the early stage and treatable if diagnosed?
Thanks for all the comments. David
Posts: 21 | From NYC | Registered: Sep 2015
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posted
Klust .. I removed the "extra" post with the typos. Don't worry about them, we are used to it!
I removed it since it can get confusing to someone reading the entire thread and they end up reading the same thing twice.
Thanks for trying to help us out!
It's hard to say what is "early" and what is not. Some people can get very ill even from the first day. Waiting one month for treatment is bad, waiting 6 months is even worse .. but still better than being undiagnosed 10+ yrs like some of us.
Just stay on top of things and advocate for your son as best you can.
Personally, I would make an appointment with a pediatric LLMD now because the wait is usually 6 months or more to get in. I don't know of any in NYC or NY, but nearby states are possibilities.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96220 | From Texas | Registered: Feb 2001
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posted
Lymetoo has given excellent advice. As she said, the Lyme test will likely be negative.
Because of my grandson's case of Lyme, I also say make an appointment with a Pediatric LLMD as soon as possible!!! If you haven't done so, go to Seeking a Dr. and ask for recommendations. The doctor in CT. who treated my grandson may still be out with health issues, but if he's back, go to him!! He's wonderful.
I'll look for your other posts before I comment on the testing.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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posted
Didn't have time to look for your other posts, so I'm sending this in hopes that it is not repetitious for you.
I noticed that your doctor started testing shortly after the bulls eye rash, which was before an adequate number of antibodies would be available. Also, it's possible that testing was done by a lab that does not have the most reliable results.
What I wanted to suggest was that after an appropriate length of time, have your child tested by the lab in California that specializes in Lyme and Tick-Borne diseases (TBDs). I haven't been on LymeNet for some time and I don't remember if I can give the website or not. If you need information, I'll be glad to give it to you. You can call and ask for the free Test Kit. Tell them about the Amoxycillin he's had and ask when he should be tested.
I'm glad that your doctor is willing to reach out, but there is such a diversity of opinion out there, I hope that she will be talking with someone who agrees with ILADS.
As Lymetoo and I've said, call a Pediatric LLMD (Lyme Literate Medical Doctor) as soon as possible and get an appointment. Ask if they have a list of people to call when they have a cancellation. You may be able to get in sooner. The earlier you have an evaluation, the better it'll be. You can put this behind you or your child will start treatment sooner.
Wishing you and your son the best.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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Are you sure you want your e-mail address public?
Posts: 4638 | From South Carolina | Registered: Mar 2001
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
The lab in California that is a tick-borne disease specialty lab is Igenex.
You can call them and talk with them about getting a test kit sent to you.
Their testing is more accurate than LabCorp or Quest. Many that test negative through these labs test positive through Igenex.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Thanks, TF. I didn't know if the rules about specific information had changed here. I e-mailed him and hope that his son can be evaluated by a Pediatric LLMD soon.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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posted
Thank you to everyone who responded. I alphabet an appointment with a LLMD on Thursday and may even get a phone consultation tonight. I am praying that he is negative or if positive that we are in time as the initial bullseye was less than three weeks ago and he was on amoxicillin for 18 days before the allergy.
Posts: 21 | From NYC | Registered: Sep 2015
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- A negative test will mean nothing. Sorry. But, really, with a bulls eye rash, THAT is the positive test, all by itself and more so with symptoms. You don't need another test for lyme (but other tick borne infections should be considered).
Just be absolutely positive that the doctor you consult is ILADS educated / ILADS minded so they have the information about all this.
Let's Not Be Rash About Erythema Migrans - May 24, 2012
Excerpt from comment section:
Pam Weintraub - May 26, 2012
If you are doing a rash wrap-up, do not forget Ben Luft's finding that only four of 20 strains cause disseminated disease; the other 16 are rash only. . . .
It means that fewer cases of Lyme actually disseminate (reasons why activists may not mention) but it also means that of those cases that DO disseminate, much more of early Lyme is actually a treatment failure (reason IDSA types may not mention.) . . .
Pam Weintraub, Cure Unknown -
Posts: 48021 | From Tree House | Registered: Jul 2007
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quote:Originally posted by Keebler: - A negative test will mean nothing. Sorry. But, really, with a bulls eye rash, THAT is the positive test, all by itself and more so with symptoms. You don't need another test for lyme (but other tick borne infections should be considered).
Just be absolutely positive that the doctor you consult is ILADS educated / ILADS minded so they have the information about all this.
- Agree.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96220 | From Texas | Registered: Feb 2001
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
You asked:
"How long after infection is there a high probability of successful treatment with antibiotics?"
and
"How long is lyme in the early stage and treatable if diagnosed?"
Here are some relevant quotes from Dr. Burrascano:
"In general, you can think of LB as having three categories: acute, early disseminated, and chronic. The sooner treatment is begun after the start of the infection, the higher the success rate. However, since it is easiest to cure early disease, this category of LB must be taken VERY seriously. Undertreated infections will inevitably resurface, usually as chronic Lyme, with its tremendous problems of morbidity and difficulty with diagnosis and treatment and high cost in every sense of the word. So, while the bulk of this document focuses of the more problematic chronic patient, strong emphasis is also placed on earlier stages of this illness where closest attention and care must be made." (p. 3)
"Lyme Borreliosis (LB) is diagnosed clinically, as no currently available test, no matter the source or type, is definitive in ruling in or ruling out infection with these pathogens, or whether these infections are responsible for the patient's symptoms." (p. 7)
"After a tick bite, serologic tests (ELISA. IFA, western blots, etc.) are not expected to become positive until several weeks have passed. Therefore, if EM [the lyme rash] is present, treatment must begin immediately, and one should not wait for results of Borrelia tests. You should not miss the chance to treat early disease, for this is when the success rate is the highest. Indeed, many knowledgeable clinicians will not even order a Borrelia test in this circumstance." (page 7)
"After a tick bite, Bb undergoes rapid hematogenous dissemination, and for example, can be found within the central nervous system as soon as twelve hours after entering the bloodstream. This is why even early infections require full dose antibiotic therapy with an agent able to penetrate all tissues in concentrations known to be bactericidal to the organism.
It has been shown that the longer a patient had been ill with LB prior to first definitive therapy, the longer the duration of treatment must be, and the need for more aggressive treatment increases." (p. 12)
And, see p. 19 where Burrascano breaks lyme into 3 treatment categories. If sick less than a year, you are in the "early disseminated" stage. That is good. But, the earlier you begin treatment, the better.
So, there is no definitive answer to your questions. If we had accurate lyme tests, it would be so easy. But, since we don't it forces you to treat until no symptoms for 4 to 6 weeks.
See this quote:
"EARLY LOCALIZED - Single erythema migrans with no constitutional symptoms: 1) Adults: oral therapy- must continue until symptom and sign free for at least one month, with a 6 week minimum. 2) Pregnancy: 1st and 2nd trimesters: I.V. X 30 days then oral X 6 weeks 3rd trimester: Oral therapy X 6+ weeks as above. Any trimester- test for Babesia and Ehrlichia 3) Children: oral therapy for 6+ weeks."
So, based on this, if all the child had was the lyme rash, the child should be treated for 6+ weeks.
"Constitutional symptoms" would be the joint pain, etc. So, even if all of his constitutional symptoms were actually a reaction to amoxi, he still needs treated for 6 plus weeks continuously according to Burrascano.
Lyme is always treatable (but perhaps not curable). That means that treatment will improve the symptoms. Sometimes treatment will have to go on indefinitely.
"In general, early LB is treated for four to six weeks, and late LB usually requires a minimum of four to six months of continuous treatment. All patients respond differently and therapy must be individualized. It is not uncommon for a patient who has been ill for many years to require open ended treatment regimens; indeed, some patients will require ongoing maintenance therapy for years to remain well." (p. 17)
I went undiagnosed for at least 10 years. Still, once I got to a lyme specialist who followed the Burrascano protocol (high doses of antibiotics in combination, plus testing and treatment for all coinfections--I had babesiosis and bartonella also) I got well.
See p. 18 for a list of meds that can be used to treat lyme. It states which ones children can take. For example, "*Cefuroxime axetil--Children: 125 to 500 mg q12h based on weight"
In English, that says 125 to 500 milligrams every 12 hours based on weight.
The more you can study the Burrascano Guidelines, the more you will understand about diagnosing and treating this horrendous disease.
It is imperative that you get the best lyme doctor you can afford to advise you because so much is at stake.
"Remember, years of experience with chronic antibiotic therapy in other conditions, including rheumatic fever, acne, gingivitis, recurrent otitis, recurrent cystitis, COPD, bronchiectasis, and others have not revealed any consistent dire consequences as a result of such medication use. Indeed, the very real consequences of untreated, chronic persistent infection by B. burgdorferi can be far worse than the potential consequences of this treatment." (p. 22)
This quote from p. 3 is the most important thing for you to get from all of this:
"Undertreated infections will inevitably resurface, usually as chronic Lyme...."
If he has lyme (no way to know this), and you undertreat now, the lyme will INEVITABLY resurface later on. This from the lyme disease pioneer and #1 lyme doctor in the world before he retired. They came from every country on the globe to be treated by him.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Thank you very much for the information. We are going to an LLMD on Thursday morning so we should be in good hands.
I might be losing my mind but when we were in Florida over the weekend, we were by the water in the early evening with lots of mosquitos. My daughter got a bite on her chest and as it blew up a bit and then faded, I swore that I saw a bullseye. I have become lyme paranoid and every blemish that I see on the four kids makes me think it's lyme. Unfortunately, I did not take a picture and the blemish on my daughter was gone in a day but maybe I should take her to the LLMD just in case.
Thanks again for the reply.
Posts: 21 | From NYC | Registered: Sep 2015
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posted
It can indeed be spread by mosquitoes, but if she has no symptoms I wouldn't worry too much.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96220 | From Texas | Registered: Feb 2001
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Well, I hope the doctor you are seeing tomorrow is truly a lyme specialist. Generally, you can't get in with such a doctor in just a few days.
I hope you have checked out the doctor's credentials thoroughly. That means that you have gotten input on the doctor from at least a few lyme Support Groups (see Support Groups on the left side of the page), or local lyme patients.
I hope the doctor has a webpage that shows his credentials and talks all about lyme disease.
I hope his practice is basically just lyme disease patients.
That is how you can tell a real lyme specialist.
You can ask our opinions here by giving the first letter of the doctor's last name and his state. For example, Dr. M of NY or Dr. J of Connecticut.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
We just finished an appt with Dr Y at NYU that was on a list from this site as an LLMD.
He was okay and suggested that we send blood work to stonybrook today and in 3 weeks as they do the same testing as iGENx.
He also said that we should stay off the antibiotics for now as (1) my son was allergic to amoxicillin, (2) has not shown symptoms and (3) awaiting the blood test. He said My son also took two weeks of amoxicillin, which is a decent preventive dose for a 2-year old without symptoms other than the initial rash.
I hope that we are getting good advice.
Posts: 21 | From NYC | Registered: Sep 2015
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Of course, what he said does not line up with Burrascano.
"He said My son also took two weeks of amoxicillin, which is a decent preventive dose for a 2-year old without symptoms other than the initial rash."
Burrascano says:
"EARLY LOCALIZED - Single erythema migrans with no constitutional symptoms:
Children: oral therapy for 6+ weeks."
He gave you the IDSA party line.
Everyone on this site needs to know that when you get a list of lyme doctors from anyone, you have to do your own due diligence--research the doctor by contacting lyme Support Groups, lyme patients who are in the know, check the doctor out on the Internet, etc.
People new to lyme don't know how to tell if a doctor is good or not. So, they have to educate themselves. What protocol does the doctor follow? You want to know that before you go to him.
This is critical. If you don't know what the doctor believes about lyme, you are likely in for a disappointment.
So, you have to know what YOU believe about lyme and then find a doctor who believes like you.
Sad to say but there are two very different camps when it comes to lyme disease. Figure out what camp you believe, and go to a doctor that is in your camp.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Drawing a blood sample on a Thursday is setting it up for failure. It's too late in the week.
Reasons for False Negative (Seronegative) Test Results in Lyme Disease
An ILADS educated LLMD is the kind of doctor who knows what they should about lyme. Some other doctors will tell you they do but if the are backing the IDSA approach, they are not at all lyme literate. You will not find one with a university hospital.
Stonybrook does not do the same level of testing as Igenex, sorry.
WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation for lyme, OTHER tick-borne diseases, and other chronic stealth infections - and all that goes along for the ride.
Medical "models" explained here, as to differences in the ISDA & ILADS models of assessment & treatment - and exactly why it is so very important to know the differences.
posted
I did this recently for a NK Cell activity test. I had the blood draw on a Thursday - and I know better than that.
The results came back Unable to process, or something to that effect. Now I have to get a new script, and that's a pain as this is an unusual test.
I simply forgot. My specialist should have reminded me, but, eh, it was on my shoulders.
Anyway, yeah, get labs done early in the week, preferably. I've had a ton of Lyme labs done over the years, and most were done on a Monday or Tuesday.
Posts: 228 | From Unitied States | Registered: Jul 2015
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I'm glad you are also having a test through Igenex in 3 wks. That may help.
I don't think Stonybrook tests for all possible bands .. and it's still too early for it to show up on testing (unless you get lucky.)
Also.. the others are correct. Do any Lyme testing early in the week. You don't want the blood sitting around at the post office. It can skew the results.
God bless you .. and hang in there! You are being a great advocate for your son.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96220 | From Texas | Registered: Feb 2001
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
He is NOT having a test through Igenex in 3 weeks. The doc is going to do another Stonybrook in 3 weeks.
Please know that when blood is drawn late in the week, it can end up sitting over the weekend. This causes a false negative result because as the blood sits it clots. The clots hold the antibodies and so they cannot react with the test medium. So, you get a negative result due to clotting instead of a true result.
Here is how Dr. C explains it:
"You get what you pay for, so use a lab that specializes in borreliosis. The right way to process the Western blot specimen means for the blood to be drawn and express mailed early in the week.
Research shows the borrelia antibodies have the potential to clump together, resulting in false negative test results. So far, unclumping has not been practical for laboratories to do.
The fresher the specimen, the more accurate the test results. Patients at our office are scheduled Monday, Tuesday, or Wednesday if testing is to be done.
This way, express shipping will assure that the specimen does not spend the weekend sitting at the post office. This is the right way to test and ship borreliosis specimens."
posted
Thanks everyone. I am taking my son to a true LLMD on October 13 (will cost $750 and no insurance). Hopefully, we will get the right help. I am a bit concerned about my son taking too many antibiotics as that also has side effects.
I am also a bit unsure about what to do with my daughter. In Florida we all got ravaged by mosquito bites and one double bite on her chest looked a bit like a bullseye as it was fading. It could have been a tick from a couple of weeks ago or even a mosquito carrier but the chances seem slim and it was not a pure bullseye like my son. Unfortunately, we did not take a picture and it went away in under 2 days. How long do lyme rashes last and how big are they typically? I am not sure if we should give her treatment or just do a test or two and watch for symptoms.
BTW - when our family doctor recommended that my son stop the antibiotics, he had not yet shown and allergy but as I pushed for three or four weeks, the allergy began making me feel like I may have caused it by giving him too much. That is a horrible feeling.
Your responses are appreciated.
Posts: 21 | From NYC | Registered: Sep 2015
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Give us the first letter of the LLMD's last name and the state in which he is located.
For example, Dr. M in NY or Dr. J in Connecticut.
We will tell you if he is a good lyme doctor.
I hope you researched him as required. Would not want you to waste $750.
Also, I hope you told them the age of the patient. Not many LLMDs will treat a patient this young. Not many at all.
Regarding the lyme rash, you may have noticed Burrascano's discussion of the rash on p. 7. Notice that he doesn't say how long it will last or how large it will be. That is evidently because it can vary greatly.
The first time I got lyme I didn't get any rash. But, the second time I got lyme, I got a rash that became about 3 inches in diameter. It lasted about 3 weeks, but the center bite mark lasted about 2 months. My lyme doc said that the bite mark is the epicenter of the infection and that is why that mark lasts so long.
When I first got lyme, I got a total of about 13 small rashes on my legs. They were each about the size of a dime or nickel. They lasted a few weeks and were extremely itchy. I am guessing that these were lyme rashes. It was 10 years later that I was finally diagnosed with lyme.
I have a friend who got a lyme rash in the Army after going through woods and having many ticks pulled off of him. His rash covered his entire chest at its largest.
Regarding allergies, you can't cause an allergy to antibiotics by "giving the person too much." The doctor determined the dosage. You simply pushed for 3-4 weeks of treatment. Burrascano says you need 6+ in your situation. So, please don't feel horrible about what you did. Not at all.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Lyme disease that is not treated adequately will be devastating!! It's equally important to know if co-infections are present!!
It's my opinion that many who are opposed to stronger treatment will stress "side effects of antibiotics". One consideration is the digestive tract. I don't think they understand the importance of probiotics to replace the good bacteria in the system. If probiotics are taken correctly (amount and proper timing), most people can tolerate stronger doses for a long time. Dr. Burrascano discusses this in his guidelines.
After my grandson's battle with LD and Bartonella, I believe that the possibility of those side effects pales in comparison to the results of undertreating this disease.
It took us about 5 years to get a diagnosis and that was only after traveling from South Carolina to CT to see a Pediatric LLMD. It took several months to see him, but it was well worth the wait. The child was treated long term for LD and Bart. We considered his probiotics just as important as his antibiotics. I'm happy to report he is considered cured and is now in college.
Be sure you take him to a LLMD who knows the most about treating young children for Tick-Borne Diseases. While you're there, ask for an opinion about your daughter's situation.
What I'm trying to say, is getting an accurate diagnosis and adequate treatment is the most important thing you can do for your child.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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