posted
Hello everyone, thank you for taking the time to read and help individuals like me when it comes to Lyme awareness.
I got a non-engorged tick bite at the beginning of the month, no rash but started getting unusual symptoms. Had blood tested on IgM/G about 3 weeks after bite, returned negative and was suggested that I might have a gluten sensitivity.
I'm looking to get a second opinion, but my concern is that the symptoms are starting to diminish....and I'm not sure if this is Lyme disease at work at or my gluten-free diet is being effective.
So I have two questions: can Lyme symptoms dissipate as early as 2 weeks? (I'd assume so if the symptoms can occur in 2 weeks...). And perhaps more importantly, what's type of time frame should I be operating on in terms of urgency for treatment? Days, weeks, months?
Obviously the earlier the better -- I just don't want to look back and say 'If only I had treatment a week earlier...' in the event that I even do need it.
Thanks for the help.
Posts: 3 | From United States | Registered: Jun 2014
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
Well, 3 weeks is waaaaaaay too early to even do a Lyme test. You didn't see a doctor who really understands Lyme if he/she tested that early.
There's even a bill that was passed in Virginia on the topic.
"IF DONE TOO EARLY, YOU MAY NOT HAVE PRODUCED ENOUGH ANTIBODIES TO BE CONSIDERED POSITIVE BECAUSE YOUR IMMUNE RESPONSE REQUIRES TIME TO DEVELOP ANTIBODIES. IF YOU ARE TESTED FOR LYME DISEASE, AND THE RESULTS ARE NEGATIVE, THIS DOES NOT NECESSARILY MEAN YOU DO NOT HAVE LYME DISEASE."
You need at least 6-8 weeks after the bite for the body to even make antibodies. Even then, you could get a negative test (it happened to me and I even had the bulls-eye).
If it were me, I'd do 6 weeks of antibiotics just to make sure. It's hell if you wait to treat, even if you wait just a couple months and you are infected (I learned that the hard way after being re-infected and delaying treatment).
It's very common to have something like a cold with Lyme, it goes away, then comes back with a vengeance later on.
Ticks don't have to be engorged to transmit Lyme and other infections. That's a myth.
They could have just fed somewhere else and the infection is all ready to go.
Also, ticks transmit way more than Lyme, no engorged tick necessary.
posted
Agree with Judie - we send people for triage for like 6-8 weeks doxycycline to be on the safe side as you can only knock an infection out in the beginning. Not everyone gets initial symptoms. I didn't have any for 10 weeks myself.
[ 07-02-2014, 05:15 PM: Message edited by: Robin123 ]
Posts: 13116 | From San Francisco | Registered: May 2006
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I had only done initial research prior to the first doctor visit, but 3 weeks did seem too early for testing.
I scheduled an appointment with an LLMD, so it'll be roughly 6 weeks when I'll get retested on a greater breadth Western Blot (only did the IgG/IgM).
Any suggestions for what to do in the meantime? I've been journaling all of my symptoms, researching, and continuing the gluten-free diet since none of those require a prescription. Would you suggest trying to get a doxy prescription? Do you think my original doctor would if they're not so Lyme literate?
Posts: 3 | From United States | Registered: Jun 2014
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posted
Listen, if you wait that long, and you were exposed - obviously we don't know that, but this is to play it safe - you should not be waiting to start on doxy now, like 200mg twice a day and stay out of the sun. Yes, I know it's summertime, but try!
Posts: 13116 | From San Francisco | Registered: May 2006
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I suggest you read and STUDY the Burrascano Lyme Treatment Guidelines found here:
This will give you your education on this difficult to treat disease.
This is the best thing you can do for yourself--become an educated patient.
The reason is this: There is no standard treatment for lyme disease. So, if you know nothing, you will just go along with whatever the doctor has you do. People who just sit back and wait for the magic to happen often find that it never happens.
You see, when you don't know anything about lyme disease, you also don't know how to pick a good lyme doctor. So, the first lyme doc that most people see isn't very good. You can waste a lot of time this way.
But, if you learn what good lyme treatment looks like, then you can ask intelligent questions about the various lyme doctors you are considering. (You ask people in lyme support groups, those who know this doctor, etc.) This way, you can evaluate the various docs and pick a good doc right off the bat.
When I was first starting out, I wasted 2 years with a doc who was giving me inadequate lyme treatment. His name was given to me by a local lyme support group leader.
Finally, I read and studied Burrascano, went to 2 lyme meetings and heard Burrascano speak, and realized that Burrascano knew a heck of a lot more than my current lyme doctor.
Then I called another support group and said I wanted a doctor who followed everything in the Burrascano lyme treatment protocol. This person said to me, "What exactly do you mean by that?"
I said, "I want a doc who does the following:
He must attack both the regular and cyst (or other) form of lyme simultaneously--requires 2 different antibiotics to do so.
He must test the patient for all co-infections and other physical ailments (thyroid, etc.) and treat everything the person has.
He must treat all co-infections (including mycoplasma, etc.) or the patient will not get well.
He must use Igenex for most of these tests--they are a tick-borne disease specialty lab in Calif.
He must use very high doses of antibiotics to kill the diseases (batericidal doses).
He must give the patient supplements, probiotics, herbs such as artimesinin if babesiosis is suspected, and require adherence to rules such as low carb diet, no alcohol, no smoking, rest, and exercise as the patient is able to do it.
He must treat at least 2 months after all symptoms have disappeared (if sick at least 1 year)."
That's how I found the lyme doctor who got me well. That was over 9 years ago. I am still well to this day. I still stick around LymeNet just to help people get through the lyme doctor learning curve.
So, read the Guidelines a bit at a time, looking up the words you don't understand. That is the very best thing you can do for yourself right now. Then, with that education, you can make good decisions regarding your healthcare.
See the quote from Burrascano below to find out how long you should be treated:
TREATMENT CATEGORIES
PROPHYLAXIS of high risk groups- education and preventive measures. Antibiotics are not given.
TICK BITES - Embedded Deer Tick With No Signs or Symptoms of Lyme (see appendix):
Decide to treat based on the type of tick, whether it came from an endemic area, how it was removed, and length of attachment (anecdotally, as little as four hours of attachment can transmit pathogens). The risk of transmission is greater if the tick is engorged, or of it was removed improperly allowing the tick's contents to spill into the bite wound. High-risk bites are treated as follows (remember the possibility of co-infection!):
1) Adults: Oral therapy for 28 days. 2) Pregnancy: Amoxicillin 1000 mg q6h for 6 weeks. Test for Babesia, Bartonella and Ehrlichia. Alternative: Cefuroxime axetil 1000 mg q12h for 6 weeks. 3) Young Children: Oral therapy for 28 days.
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.
DISSEMINATED DISEASE - Multiple lesions, constitutional symptoms, lymphadenopathy, or any other manifestations of dissemination.
EARLY DISSEMINATED: Milder symptoms present for less than one year and not complicated by immune deficiency or prior steroid treatment:
1) Adults: oral therapy until no active disease for 4 to 8 weeks (4-6 months typical) 2) Pregnancy: As in localized disease, but treat throughout pregnancy. 3) Children: Oral therapy with duration based upon clinical response.
PARENTERAL ALTERNATIVES for more ill patients and those unresponsive to or intolerant of oral medications:
1) Adults and children: I.V. therapy until clearly improved, with a 6 week minimum. Follow with oral therapy or IM benzathine penicillin until no active disease for 6-8 weeks. I.V. may have to be resumed if oral or IM therapy fails. 2) Pregnancy: IV then oral therapy as above.
LATE DISSEMINATED: present greater than one year, more severely ill patients, and those with prior significant steroid therapy or any other cause of impaired immunity: 1) Adults and pregnancy: extended I.V. therapy (14 or more weeks), then oral or IM, if effective, to same endpoint. Combination therapy with at least two dissimilar antibiotics almost always needed. 2) Children: IV therapy for 6 or more weeks, then oral or IM follow up as above. Combination therapy usually needed. (pages 19-20)
Since you had some constitutional symptoms, you fall into the Disseminated Disease, Early Disseminated category.
Please notice that you should NOT agree to take any steroids or immune suppressing drugs. This is based on various statements in Burrascano such as:
"More evidence has accumulated indicating the severe detrimental effects of the concurrent use of immunosuppressants including steroids in the patient with active B. burgdorferi infection. Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course. If immunosuppressive therapy is absolutely necessary, then potent antibiotic treatment should begin at least 48 hours prior to the immunosuppressants." (page 12)
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Sorry for the confusion, I meant 6 weeks since the bite -- LLMD appointment is in 2 weeks.
I'm going to try to schedule an appointment again with my PCP to see if we can start the Doxy treatment going.
Does anyone think those CVS Minute clinics would be able to prescribe doxy? I know they prescribe other acne medicine...
And more importantly, I assume it's a much better choice to start taking antibiotics now and not worry about my LLMD antibody tests being less accurate, correct?
And thanks for the link TF, I had glimpsed through it earlier, but I definitely need to invest more time into it.
Posts: 3 | From United States | Registered: Jun 2014
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