You are right to presume that you will need more than 3 weeks of Doxy.
Have you consulted with an LLMD ("Lyme Literate Medical Doctor")? That will be your best chance at getting the best treatment.
Do you know whether you caught your Lyme early? In other words, is it a new infection? Sometimes it's hard for us to know whether our infections are new or whether it's a case of us being re-infected. Again, an LLMD can be of the best help with this.
The general rule of thumb in appropriate Lyme treatment according to the International Lyme and Associated Diseases Society ("ILADS") is that your Lyme infection should be treated as long as necessary -- until you are symptom free for at least 2 months.
These days most people with Lyme Disease also have contracted Lyme Co-Infections. The ticks and other bugs that are transmitting the Lyme are also transmitting these additional infections. Babesia, Bartonella, Erhlichia, Rocky Mountain Spotted Fever, Mycoplasmas, are just some of the infections that are tagging along with the Lyme. And they often need treatment in addition to treating the Lyme.
Again, an LLMD would be in the best position as far as knowledge and experience in evaluating you for these.
If you are interested in consulting with an LLMD (and I highly recommend it), you can post a request in the Seeking Doctors section here on Lymenet. Just let people know where you are willing to travel or the general area that you'd like to find a doc.
The Lyme Disease Association also has a doctor referral list on their website.
I'll post a few articles for ya in a post below. Hopefully these will help explain the need for seeing an LLMD over any other kind of doctor better than I can right now.
Hope this helps.
Fuzzy
Posts: 503 | From Maryland | Registered: Oct 2007
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Controversy continues to fuel the "Lyme War" By Virginia Savely, RN, FNP-C May 18 2007
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Controversy over the treatment of a particular disease is not uncommon. There are many illnesses for which there are different schools of thought and more than one treatment method--e.g., heart disease, prostate cancer, and breast cancer. When it comes to Lyme disease, a bacterial infection caused by the corkscrew-shaped spirochete ,Borrelia burgdorferi, the battle lines are particularly distinct, and the opposing viewpoints reach vitriolic proportions, to the ultimate detriment of the patients.
Lyme disease, which is most commonly acquired through the bite of an infected tick, has been reported in every state and has become the most common vectorborne disease in the United States. In 2005, the CDC received reports of 23,305 cases, resulting in a national average of 7.9 cases for every 100,000 persons. In the 10 states where the infection is most common, the average was 31.6 cases for every 100,000 persons. The CDC estimates that the disease is grossly underreported, probably by a factor of 10. Meet the players
The opponents in the battle over the diagnosis and treatment of Lyme disease are the Infectious Diseases Society of America (IDSA), the largest national organization of general infectious disease specialists, and the International Lyme and Associated Diseases Society (ILADS), an organization made up of physicians from many specialties.
IDSA maintains that Lyme disease is relatively rare, overdiagnosed, difficult to contract, easy to diagnose through blood testing, and straightforward to treat (www.journals.uchicago.edu/CID/journal/issues/v43n9/40897/40897.html. Accessed April 6, 2007). ILADS, by contrast, asserts that the illness is much more common than reported, underdiagnosed, easier to contract than previously believed, difficult to diagnose through commercial blood tests, and difficult to treat, especially when treatment is delayed because of commonly encountered diagnostic difficulties (www.ilads.org /guidelines.html. Accessed April 6, 2007).
Diagnosis: Where it all begins
If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided. However, Lyme disease is often missed during its early stage when it could be most easily treated (Table 1).
Since the deer tick is no larger than the period at the end of this sentence, it is not surprising that people frequently do not realize they've been bitten. In a hairy part of the body, the tick is almost impossible to see, and even when it is noticed, it is often mistaken for a mole or scab. When the tick latches on, it injects salivary components that anesthetize the area and decrease inflammation at the site of the bite, leaving the victim unaware of the tick's presence and allowing it to feast undisturbed.
The erythema migrans (EM) rash is commonly known as the ``bull's-eye'' rash for its characteristic shape. The CDC maintains that a patient presenting with a bull's-eye rash does not require testing for Lyme disease because the rash is diagnostic in its own right. However, the rash does not always present in the classic pattern of concentric, round, red circles. EMs can be oval in shape and/or solid in color, with shades of pink, purple, and red. The rash may or may not contain pustules, itch, feature a dark spot in the middle, or have a denuded center. The size varies from that of a quarter to 12 in or more. Some victims develop a diffuse rash over the entire body. EMs are commonly misdiagnosed as spider bites, cellulitis, or ringworm. To complicate matters further, as many as half the people who acquire Lyme disease from a tick bite develop no rash at all.
Frequently, a clinician mistakenly assumes that there are no Borrelia-carrying ticks in the patient's geographic area and fails to include the disease in the appropriate differential diagnosis. Lyme disease should be considered regardless of where a patient lives. Ticks are carried on numerous animals, including household pets, rodents, deer, and birds, so it is little wonder that Lyme disease-transmitting ticks are not confined to a few distinct geographic areas. A travel history should be obtained to determine whether the patient has recently traveled to a particularly Lyme-endemic area (the northeastern United States, north-central United States, and the Pacific coastal region).
Most clinicians are not familiar with the varied signs and symptoms of Lyme disease (Table 2), and this contributes to misdiagnosis (Table 3). Children may present differently than adults, with predominant symptoms being changes in behavior and school performance. In affected children, parents typically report mood swings, irritability, obsessive-compulsive behavior, and new-onset attention-deficit/hyperactivity disorder. Physical symptoms in children may include fatigue, frequent headaches or stomachaches, urinary symptoms, and migratory musculoskeletal pains.
When a patient presents with a collage of seemingly unrelated symptoms, there is a natural tendency to assume that a psychological component is at play. Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
The testing conundrum
The CDC is aware of the insensitivity of the tests for Lyme disease and encourages clinicians to use judgment rather than a test result to make the diagnosis (www.cdc.gov/ncidod/dvbid /lyme/ld_humandisease_diagnosis.htm. Accessed April 5, 2007). As previously mentioned, however, most clinicians do not feel confident in making this judgment call and continue to look to unreliable test results for confirmation of disease.
[click on link for the rest of the article]
2. Dr. Scott Taylor's Article, "A Plague of Ignorance Regarding The Ignorance Of A Plague."
5. Also on the ILADS website you can find Diagnostic & Treatment Guidelines For Lyme Disease. Here's one version, but look to the website to see all versions:
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