Hi all. I am glad I found these boards. I hope all of you can advise me in the right direction. I spent yesterday reading a bunch of your posting, especially from Ticker and all were so informational, but have left me with a bunch of questions in my mind. Back at the end of August I noticed a spot on my leg that I had no idea what it was. Sometime in September we took our kids to a science center and in the deer section it showed a picture of a bulls eye rash from a tick bite that is carrying lyme, and my 8 year old daughter said, hey mom that is what is on your leg.
I got home that Saturday and looked up other pictures online to get a good look, and sure as heck it was a bulls eye rash. I made an appointment that Monday with the PA at my primary care and had the blood test. Of course he said well it could be a spider bite, but I knew, I had it for over a month and I was already exhibiting symptoms that were suspicious.
But here is where I become confused. The test did come back showing on strand positive for lyme antibodies, but because it is only one strand my doctor had spoken with the CDC and the other smears and such where negative and the CDC says it is not Lyme. But how can lyme antibodies be present even a small amount and you not have lyme? My doctor did put me on doxycycline 200mg a day for 2 weeks. 2 weeks after I am off it, I already have the order for another Lyme titer, I go sometime after November 16.
What constitutes Lyme? I have the phone # to find a Lyme specialist in my area, I will be calling later today. I have had extreme fatigue for about 6 weeks, my hair has been "shedding" alot (a symptom I wasn't aware of until I read Tickers post), I have had a stiff neck with no explination for 6 weeks, and my brother in law and father in law are chiropractors, no help there. My normally excellent memory recall is shot all to heck, and I do exprience periods of lightheadness. How long does it take for Lyme sysmptoms to show up? Also one knee has been shot for about that same 6 week period. This bulls eye rash has only been present since the end of August. I do live in southern NH, with a huge deer population, even in my own yard. Although in 2001 according to the CDC there were only 85 cases reported in NH. Any information would be welcome, and I thank you all in advance.
Lisa, I experienced all of the same symptoms, but never saw a tick or any rash. My symptoms started late in July and by the first week of September I felt like I was 80 years old. I also have had vertigo, memory loss, mental confusion, sore jaw, painful neck, knee aches, hair loss and a whole host of other symptoms. My lyme test came back negative on 09/05, but my doctor put me on doxycycline 200mg per day for three weeks. After the three weeks, I felt better, but then all symptoms returned. My doctor put me on the doxycycline again and I saw an infectious disease doctor last week for more tests. I recommend that you see a lyme specialist and start documenting dates and symptoms for a clinical review by a lyme literate doctor. I live in CT which is a hot lyme state, but we have a home in NH where I may have been infected.
Thanks DTemple for your reply. I admit I was astonished at my PA's resitence that it could possibly be Lyme, but he went ahead with the test anyway, which I now understand to be unreliable at best. But my doctor explained the initial screen came back positive but the other tests from that came back negative. My confusion does lay with the fact of if there are Lyme antibodies present how can it be negative for Lyme? She said it is according to the CDC guidelines, but agreed at my insistence to put me on the doxycycline, but only for 2 weeks. I did put a call in this morning to the LDA for a physician referral in my area and am expecting a call back on that. I am however flabbergasted at the general medical communities ignorance to Lyme. Not only in Lyme hot areas but across the country. How can they figure that Lyme is not heavy in NH, when we are a 1.5 hour drive from CT.? Lyme is also heavy in northern Mass., I am 14 miles north of the mass border. There is no doubt in my mind, especially with the bulls eye rash that is still on my leg, but healing that I have lyme. That is only backed up in my mind with the exsistence of (even if it is only one strand) of the lyme antibody in my blood test. What I want to avoid is the later problems that are caused by lyme. I do not want to be misdiagnosed with other things such as MS, as my younger sister does suffer from MS (there is no doubt on this on her part it is a definitave DX by a neurologist with MRIs), but I want to be treated for and DXd for what I am actually suffering from. This is an awful infection, that if treated early can be combated, and it is awful to think that doctors will treat it as something else, even tell patients with an obvious bulls eye rash, don't worry its probably a spider bite. I mean come on now. I wish you tons of luck with your treatment, Although I am not feeling very good about the outcome from this treatment for me, it is the same as yours, 1 weeks less. I have been on the medicine for 6 days, and the only symptom I have seen ease up is the neck stiffness, the others I am still suffering from. Thanks for your response.
LisRho a bullseye rash is a definite sign of Lyme. No test is completely reliable. From what I understand, the one most doctors will run first the ELISA or titer, is the least reliable of all. Still, I would suggest that you get copies of all your test results.
Two weeks of treatment is not long enough for Lyme. It is my understanding that an infection caught within two weeks of the bite should be treated for a minimum of six weeks. If symptoms persist, further treatment is warranted. 200 mg of Doxy is not strong enough for Lyme. I believe the recommended dose is 300-600 mg daily.
Your symptoms sound very Lyme like to me. If you still have the rash, it is a good idea to photograph it for documentation. Place something near it, like a coin or ruler, before photographing to give it size definition. That way you have evidence of it if needed later.
Lyme Disease is the second fastest growing infectious disease in the US after AIDS. It is grossly underreported. Please get to a knowledgeable doctor. Make sure you are tested for all of the co-infections that ticks can transmit.
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