Tomorrow my internal medicine doctor is gong to run any test i ask him to run for lymes. The only thing I had done so far was one called "lyme antibody serum" test. Can someone please list what I need to ask him for tomorrow?
check " Igenex " lab for different descriptions of Lyme and Co-infection tests available. Other labs do not test for all the bands on the western blot ( 31 and 34, which are 2 of the most specific) and do not offer the variety of testing.
Glad to hear you are seeing an open-minded doc. From this website you will find the basic points below (take out the extra spaces to search for the website ... the spacing is to stop the bot on *this* website from blocking out the URL):
www. ilads. org / lyme_disease / about_lyme .html
Items 6, 7, 8 and 10 below talk specifically about the testing. These are just basic points. On the ILADS website are additional postings from leading Lyme docs and are very worthwhile to read for you and also for your doc.
Under the tab 'About Lyme' are postings including Burrascano's Diagnostic Hints and Treatment Guidelines. It's critically important information. Dr Burrascano is one of the leaders in the field.
Please note the commentary below about the need to test for coinfections. There are several, and an LLMD can, by taking a good history and physical, figure out which coinfections to test for. My rule of thumb is: when in doubt, do the test -- but it gets expensive. Insurance will probably reimburse at least a portion ... mine did, but it's indemnity (not HMO) insurance. My theory however was that I'd spend my last nickel to get well, because I was going downhill fast.
A lab favored by some Lyme docs is IGeneX in Palo Alto CA. They have been beefing up their website and have extensive information about the tests they offer. I don't know if you need a special kit from IGeneX or if standard blood collection tubes work. I was told NOT to get blood drawn on a Friday, because it sits around all weekend and degenerates. Don't know if that's true, but ask your doc since tomorrow (actually today, it's after midnight) is indeed Friday.
Your doc should be made aware that the reason for longer-than-a-few-weeks of treatment is because B. burgdorferi, the bacteria that cause Lyme, have an exceptionally slow reproductive cycle, a characteristic similar to other, unrelated bacteria that cause leprosy and I believe also tuberculosis: months long courses of antibiotics are used to treat those diseases, so there is precedent and reason.
Good luck, and let us know how it goes.
[[oops, message is too long. will paste the list from ILADS in the next post below.]]
" 1. Lyme disease is transmitted by the bite of a tick, and the disease is prevalent across the United States and throughout the world. Ticks know no borders and respect no boundaries. A patient's county of residence does not accurately reflect his or her Lyme disease risk because people travel, pets travel, and ticks travel. This creates a dynamic situation with many opportunities for exposure to Lyme disease for each individual.
" 2. Lyme disease is a clinical diagnosis. The disease is caused by a spiral-shaped bacteria (spirochete) called Borrelia burgdorferi. The Lyme spirochete can cause infection of multiple organs and produce a wide range of symptoms. Case reports in the medical literature document the protean manifestations of Lyme disease, and familiarity with its varied presentations is key to recognizing disseminated disease.
" 3. Fewer than 50% of patients with Lyme disease recall a tick bite. In some studies this number is as low as 15% in culture-proven infection with the Lyme spirochete.
" 4. Fewer than 50% of patients with Lyme disease recall any rash. Although the erythema migrans (EM) or “bull’s-eye” rash is considered classic, it is not the most common dermatologic manifestation of early-localized Lyme infection. Atypical forms of this rash are seen far more commonly. It is important to know that the EM rash is pathognomonic of Lyme disease and requires no further verification prior to starting an appropriate course of antibiotic therapy.
" 5. The Centers for Disease Control and Prevention (CDC) surveillance criteria for Lyme disease were devised to track a narrow band of cases for epidemiologic purposes. As stated on the CDC website, the surveillance criteria were never intended to be used as diagnostic criteria, nor were they meant to define the entire scope of Lyme disease.
" 6. The ELISA screening test is unreliable. The test misses 35% of culture proven Lyme disease (only 65% sensitivity) and is unacceptable as the first step of a two-step screening protocol. By definition, a screening test should have at least 95% sensitivity.
" 7. Of patients with acute culture-proven Lyme disease, 20–30% remain seronegative on serial Western Blot sampling. Antibody titers also appear to decline over time; thus while the Western Blot may remain positive for months, it may not always be sensitive enough to detect chronic infection with the Lyme spirochete. For “epidemiological purposes” the CDC eliminated from the Western Blot analysis the reading of bands 31 and 34. These bands are so specific to Borrelia burgdorferi that they were chosen for vaccine development. Since a vaccine for Lyme disease is currently unavailable, however, a positive 31 or 34 band is highly indicative of Borrelia burgdorferi exposure. Yet these bands are not reported in commercial Lyme tests.
" 8. When used as part of a diagnostic evaluation for Lyme disease, the Western Blot should be performed by a laboratory that reads and reports all of the bands related to Borrelia burgdorferi. Laboratories that use FDA approved kits (for instance, the Mardx Marblot®) are restricted from reporting all of the bands, as they must abide by the rules of the manufacturer. These rules are set up in accordance with the CDCs surveillance criteria and increase the risk of false-negative results. The commercial kits may be useful for surveillance purposes, but they offer too little information to be useful in patient management.
" 9. There are 5 subspecies of Borrelia burgdorferi, over 100 strains in the US, and 300 strains worldwide. This diversity is thought to contribute to the antigenic variability of the spirochete and its ability to evade the immune system and antibiotic therapy, leading to chronic infection.
" 10. Testing for Babesia, Anaplasma, Ehrlichia and Bartonella (other tick-transmitted organisms) should be performed. The presence of co-infection with these organisms points to probable infection with the Lyme spirochete as well. If these coinfections are left untreated, their continued presence increases morbidity and prevents successful treatment of Lyme disease.
" 11. A preponderance of evidence indicates that active ongoing spirochetal infection with or without other tick-borne coinfections is the cause of the persistent symptoms in chronic Lyme disease.
" 12. There has never been a study demonstrating that 30 days of antibiotic treatment cures chronic Lyme disease. However there is a plethora of documentation in the US and European medical literature demonstrating by histology and culture techniques that short courses of antibiotic treatment fail to eradicate the Lyme spirochete. Short treatment courses have resulted in upwards of a 40% relapse rate, especially if treatment is delayed.
" 13. Most cases of chronic Lyme disease require an extended course of antibiotic therapy to achieve symptomatic relief. The return of symptoms and evidence of the continued presence of Borrelia burgdorferi indicates the need for further treatment. The very real consequences of untreated chronic persistent Lyme infection far outweigh the potential consequences of long-term antibiotic therapy.
" 14. Many patients with chronic Lyme disease require prolonged treatment until the patient is symptom-free. Relapses occur and retreatment may be required. There are no tests currently available to prove that the organism is eradicated or that the patient with chronic Lyme disease is cured.
" 15. Like syphilis in the 19th century, Lyme disease has been called the great imitator and should be considered in the differential diagnosis of rheumatologic and neurologic conditions, as well as chronic fatigue syndrome, fibromyalgia, somatization disorder and any difficult-to-diagnose multi-system illness.
"Disclaimer: The foregoing information is for educational purposes only. It is not intended to replace or supersede patient care by a healthcare provider. If an individual suspects the presence of a tick-borne illness, that individual should consult a healthcare provider who is familiar with the diagnosis and treatment of tick-borne diseases."
I just went to the IgeneX website and they continue to upgrade it. Third item in the menu is what tests to order and it's quite explanatory.
While ELISA and Western blot (to my understanding, and I'm not medically trained) test for antibodies your immune system makes against Lyme bacteria, IGeneX has a PCR test, or polymerase chain reaction, which looks for Lyme bacteria DNA instead of looking for your body's reaction to Lyme. This is helpful because Lyme is adept at evading the immune system, and after a while, your immune system just gives up making antibodies, figuring the bacteria are dead and gone. Lyme hides in so-called biofilms in the body, areas where they cannot be easily detected by the immune system, and in areas of low blood flow like cartilege (hence joints, esp knees). Tricky, eh.
Did you doc discuss the possibility of other diseases carried by the Lyme tick? He/she may have listened to your symptoms and already concluded that you are not likely to have any co-infections.
How soon will the results be back? I'd suggest you start keeping copies of all test results for future reference. Once they go into a doc's files, you don't know what you don't have copies of, and sometimes they come in handy.
No ear buzzing, but definitely ear ringing. Maybe it's the same thing and we just call it a different name. I think a lot of my ear ringing currently is a side effect of the herbal stuff I'm taking. But I also seem to have little bubbles in one inner ear, so that when I lean way over to pick something up off the floor, my inner ear gurgles. Kind of like when swimming pool water is stuck in your ear.
My symptoms change over time, come and go, and everyone is different and changeable too. Lyme is a pervasive infection that seems to interact with each person's metabolism and immune system differently, and when you throw possible co-infections into the mix, it just gets more complicated.
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