posted
Background: I am a 45 year old male who lives in rural Connecticut (10 minutes from the town of Lyme). I am in the woods often. In the summer of 2009, I noticed three insect bites next to each other on my leg. These were large and purple (not regular bug bites) and they did not go away for several weeks. I did not develop the classic Lyme rash or any other symptoms.
In April 2010, I suddenly developed the following symptoms at the same time: low-grade sore throat that lasted for a month, extreme tenderness in upper sternum, and pain between the shoulder blades. Over the next few weeks/months this progressed to: fatigue, inability to sleep more than 4-5 hours at a time, weight loss, tenderness in left sacroiliac area, extreme pain in lower spine (to the point where walking was hard), pain in my left foot, and slight testicular pain.
I went to the ER early on; chest xray was normal, got an ibuprophen prescription. 3 months after the first symptoms, I had about a dozen blood tests, all of which were normal except for an ESR of 29. Finally in August, I went to a new doctor and asked for a Lyme test. Doctor suggested that, based on my history and symptoms, I should start on Doxycycline 100mg twice a day while waiting for the test results. The results came back negative, but when I told the doctor that I was feeling better after only a week on the Doxy, he said I should continue to take it.
The Doxy worked like a charm (but it did make me slightly weak/dizzy). The prescription was for one month. After taking it for a month, I was pretty much back to normal.
The prescription ended in early September. About two weeks ago some of the same symptoms started to return. There are also some new symptoms that I did not experience before: very low libido, slightly blurry vision, brain fog, some problems with short term memory, forehead acne, minor headache, minor ringing in ears.
My doctor is a generalist and not very Lyme-literate, thus my posting here. What is the best treatment option for me now? Back to the oral Doxy? If yes, should the dosage be higher than 100mg twice a day? And for how many weeks/months should I take it this time? I have recently read that 200mg a day is now considered insufficient by many doctors, especially for disseminated/advanced Lyme.
Any advice is much appreciated, especially from medical professionals or knowledgeable laypersons.
Posts: 3 | From CT | Registered: Oct 2010
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Find an LLMD. There are numerous ones in CT. You need proper treatment with higher doses of abx for longer period of time.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
You start with doxy because it targets some of the co-infections. The dose is 300-600mg a day divided into two doses. Depending upon which co-infections you have, you need to expand your treatment to attack them as well. It gets to be a pretty complicated cocktail so you should see an LLMD.
Test results are often negative so you need to see a good LLMD that gives a clinical diagnosis based upon symptoms. You can get recommendations at the "seeking a doctor" forum.
Two book I would recommend getting are Cure Unknown by Pam Weintraub and the Lyme Disease Solution by Dr. S. Weintraub explains the political aspect affecting treatment. Dr. S is an LLMD and his book explains symptoms of various infections as well as antibiotic treatments.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
The forehead acne is curious to me. This is something I have had an increase in. It may be from a new lotion/sunscreen product but I haven't tried stopping that yet. I am taking doxy as well and that should clear acne.
Posts: 239 | From NC | Registered: Aug 2010
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posted
Forehead acne is a symptom of vitamin B deficiency. We had three of us, two of us with Lyme, one without, who had that and it went away with B complex supplementation.
Tickbit, look at the treatment guidelines at www.ilads.org ... you'll especially want to see the Dr. B diagnostic and treatment hints. That page is a good source of information.
Your dosage was low. Plus, you should take it until symptom free for at least two months. I agree that an LLMD is the person you should see. You can post in seeking a doctor for a referral.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
As already mentioned, you need a lyme literate doctor. Be sure they are ILADS trained.
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