I'm new here, so I'll give just a little background before getting to my question. Here's the timeline:
4/24: noticed red sore on my back, didn't think anything of it. Didn't find a tick there, however.
4/25: found ticks in the house, subsequently treated the house and got rid of the ticks. Figured the sore might be tick bite, but wasn't sure.
4/27: did a quick googling on tick bites, found some info on Lyme, and decided to get myself checked out. At this point the sore on my back had a red circle growing around it, about the size of a quarter. As I was going on business travel the next day, and didn't know what an LLMD was or the need for one, I just went to a local clinic, and was given doxycycline (200mg/day) to be taken for 14 days.
4/28-5/2: I was a little erratic in taking the doxy, and missed a few doses.
5/3-5/7: took the doxy every day on schedule.
5/8: woke up with horrible fatigue and dizziness that never left. At this point I became concerned and researched both doxycycline side effects and lyme symptoms. Called the clinic, who told me to discontinue the doxy and come back in 3 days if I had any further symptoms (I know, not good). I stopped taking the doxy.
5/9: still feeling fatigued and dizzy, I found this site and thanks to a very helpful member of this board, found an LLMD in my area.
5/10: visited very helpful LLMD, who put me on 3 weeks of augmentin (i requested something other than doxy just in case some of what I had was side effects). The doctor took blood to tests for Lyme as well as coinfections, but said it was possible it wouldn't show up even if present. Doc also said if other infections were present, augmentin would not do the trick, and I would need to get back on doxy. I'm still waiting on these results.
In the meantime, the fatigue has lessened noticeably already after a few days on augmentin, though at certain points in the day I can still tell something's not right.
So, at this point, the indicators say I have Lyme, but there is no proof. Knowing there's a chance the tests will say negative even if I have lyme or coinfections, I'm going to treat myself like I have it anyways.
My LLMD isn't done treating me, of course, but I wanted to hear from some of you who have done this thing for awhile. Since I caught it so early (I was probably taking doxycycline 1 to 1.5 weeks after the bite--it was very small on 4/24), how long would you say I should be on antibiotics, and how does 1 week of doxy and 3 weeks of augmentin sound? I feel as though I have a chance here to attack this hard before it becomes a chronic thing. I think my LLMD will work with me, and I want to make well-informed requests.
Well, that turned into a lot of information. Thanks for reading, and I welcome any advice.
Posted by Dekrator48 (Member # 18239) on :
Your LLMD will know best.
You will probably be on antibiotics for a few months after all your symptoms have resolved.
Lyme is not diagnosed based on a test. It is a clinical diagnosis, based on history, symptoms and exam.
Your LLMD will probably treat you for coinfections based on symptoms even if you have a negative test.
One week of doxy and 3 weeks of augmentin does not sound like alot.
You have a much better chance of complete recovery since you started treatment early, if he is following ILADS guidelines.
Glad you caught it early, so you won't end up like me and many others here.
Posted by Lymetoo (Member # 743) on :
I would want to be on the antibiotics for at least 2-3 months.. or until you are symptom free for at least 2 months following treatment.
Take advantage of the short window of opportunity and beat it out NOW!
Posted by WildCondor (Member # 434) on :
Knowing there's a chance the tests will say negative even if I have lyme or coinfections, I'm going to treat myself like I have it anyways.
....................... That is a very wise idea. It does sound like you could be co-infected. Keep on top of this!!
Posted by nietzsche22 (Member # 25824) on :
Thanks for the replies. WildCondor, why do you say it sounds like I could be coinfected? The fatigue and dizziness?
Posted by 17hens (Member # 23747) on :
I thought your body didn't make antibodies to lyme until 4-6 weeks after bite (if it ever does) so any tests before that time would bring a negative result.
And I thought a bull's eye (which is what Nietzsche22 described) is a definite positive sign of lyme.
I had a tick, a bull's eye and 3 negative tests.
Diagnosis must be determined by symptoms, not tests. If you don't find a doctor who will diagnose this way, you could be in for quite a ride.
Posted by nietzsche22 (Member # 25824) on :
Well, my LLMD is not basing treatment on the results of the blood test, but is doing the test anyways because she said lyme and coinfections might show up at this point. So, we're not going to stop treatment if it says negative. But at least if it says positive, it gives me a level of certainty.
Posted by Keebler (Member # 12673) on :
- Regarding dizziness: GINGER CAPSULES often help. Tea is not enough, the capsules have a therapeutic dose.
Specific for LYME patients - lots of details about ears and what can help:
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS -
Posted by WildCondor (Member # 434) on :
Yes, the dizziness! Well, that and it is likely that 95% of people are co-infected.
Posted by t9im (Member # 25489) on :
You should read Dr. Burrascano's 's treatment guidelines. The doxy doesn't hit the babesia, not sure on Bartolona.
Better to attack this now, as its better to be safe than sorry. The cost now in time, money and effort is minor compared to what it will be if not treated properly.
Posted by t9im (Member # 25489) on :
Also I think you need the doxy 400 for at least 6 weeks (as the bb bacteria is hard to reach) but the major caution is the side effect of the sun. You have to avoid it, which also means you'll need a D3 supplement.
Posted by migs (Member # 16496) on :
Hopefully it wasn't Lyme at all and hopefully if it was, you caught it early enough. Most LLMDs even agree that if you catch it before your body is septic with the bacteria, a couple weeks could well do the trick.
I am hoping for you.
If not, buckle up for some strain on every facet of your life.
Posted by nietzsche22 (Member # 25824) on :
Ok, got my results back. This is just from a phone conversation with my doc, haven't seen them. ELISA negative, but P41 band (i guess on the western blot) positive. Any of the gurus on here care to interpret that for me? Doc says it means I was infected with Lyme, basically.