No question cancer treatments can and will alter us. I was suprised to find hormone therapy after effects coud be permanent. I was always under the impression treatment was safe basically very small risks. Even chemo was not to be questioned for me with a high oncodx. Most of us including physicians focus on getting rid of the immediate cancer threat and its recurrence.

Hi BlueCowGirl - Just wanted to say I empathize with you wholeheartedly. I've battle Lyme Disease and other co-infections since I was 13, am now 41 and adding Breast Cancer into the mis.

Not sure if you are aware of how very inaccurate first tier testing is for Lyme?

Basically like a coin toss. See the below chart based on multiple studies covering the accuracy of the ELISA test, the first tier test most doctors run. Note, the most accurate of the ELISA tests available is only 67% accurate. Not something I want to determine my health and treatment, am I right? Ugggh testing for Lyme Disease has changed very little since the 1980s.

The consensus in the Lyme Community and those that deal specifically in treating Lyme Disease (read most often not Infection Disease doctors) is the most accurate test, those concerned about a Lyme Disease diagnosis, is the Western Blot.

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Reasons Why A Lyme Disease Test May Be Falsely Negative

"Lyme disease is a clinical diagnosis—based on your medical history, symptoms and exposure to ticks. Because the typical Lyme disease diagnostic tests are so insensitive, a negative test result does not mean you don't have Lyme. There are many reasons why someone who actually has Lyme may have a negative test result. There may not have been time for antibodies to develop; the immune system may be suppressed; or the person may be infected with a strain the test doesn't measure.

Lyme disease is known to inhibit the immune system and 20-30% of patients have falsely negative antibody tests."

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Myself, having been through a billion specialists, ie Rheum, Inf Disease, Hematology, Endocrinologist, and yes I even went through Mayo Clinic as well....none of them could positively, through testing, diagnosis me with Lyme Disease.

It wasn't until I took control of my own health and demanded more accurate testing that I was finally diagnosed with Lyme Disease, as well as multiple other tick borne co-infections. https://www.lymedisease.org/lyme-basics/co-infections/about-co-infections/. Since those early days, in my teenage years, I've now been positively diagnosed (according to CDC criteria and/or ILADS criteria ) 7 different times with Lyme, Babesia, Bartonella, and Erlichia.

https://www.ilads.org/research-literature/controversies-challenges/

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https://www.lymedisease.org/lyme-disease-test/

Lyme Disease Test – Two-tier Testing

"Two-tiered Lyme disease testing uses two tests. The first is a screening test that should detect anyone who might have the disease. Tests that do this well have are regarded as having high sensitivity. This test is followed by a second test that is intended to make sure that only people with the disease are diagnosed. Tests that do this well have high specificity.

HIV/AIDS is diagnosed with tests that are both highly sensitive and highly specific. They are accurate more than 99% of the time. In Lyme disease, the second test is highly specific. So there are few false positives. Unfortunately, the screening test is highly insensitive and fails to accurately identify patients who have Lyme disease. The two-tiered test system misses roughly 54% of patients. (Stricker Minerva 2010)

Because of this, LDo recommends the patients and physicians skip the ELISA and go straight to the Western blot."

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Global Lyme Alliance - Testing

"According to the International Lyme and Associated Diseases Society (ILADS), the tests are not always reliable to make a definitive diagnosis of Lyme. Both the ELISA and Western Blot are indirect tests, since they measure an antibody's response to the infection, not the infection itself. However, it can take weeks to generate enough antibodies to be detected by these tests. As a result, a blood test may give false negative results even if you are infected with Lyme

ELISA – This is the screening test used when Lyme disease is first suspected. It measures the levels of antibodies against Lyme bacteria. According to the Centers of Disease Control and Prevention, if the test proves negative for the antibodies, no further test is recommended. If the ELISA is positive or unclear, a second test is recommended to confirm the disease. However, the ELISA is falsely negative nearly 50% of the time. Sadly, many people are never tested beyond this point and are told they do not have Lyme disease when in fact they may be infected.

WESTERN BLOT – This test is run as a second-stage to confirm a positive ELISA result. It also tests for antibodies, however it reports reactivity against a panel of 10 different proteins found on the Lyme bacteria. According to the CDC, 5 of the bands must be positive for an overall positive, reportable Western blot test result.

This is generally considered the most reliable test currently available (although it is estimated to be only 80% accurate even at the best labs). Many doctors will not consider using this test unless the ELISA is positive, thus missing an important diagnostic tool."

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Another article, very "statistical" and wordy, but lays out the faults in testing, also the inaccuracy that can be found in testing spinal fluid for Lyme Disease.

"They also implemented a qPCR on plasma samples demonstrating a sensitivity of 33.8%. Two nested PCR primer sets targeting the Osp A gene were investigated in neurological LD, both acute and late cases using cerebral spinal fluid samples; they reported a sensitivity of 37.5–50% in acute cases and 12.5–25% in late cases [62]."

I myself had a spinal tap, 3 different times in my life, all came back negative for Lyme. Yet when I insisted on having a Western Blot run, I showed positive for multiple bands of Lyme DNA, therefore was positive and was treated.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5176185/

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Guess what I'm trying to say, is that even though you may have shown negative on one test, that very rarely means anything unless it's the Western Blot DNA IGG/IGM test. Please keep being your own best advocate and ask for that test to confirm, before undergoing a spinal tap, or for that matter giving up on idea that what you could/may be fighting is Lyme.

Hang in there and I wish you the best. Lyme Disease is awful and I wouldn't wish it on anyone. I was misdiagnosed with MS, CFS, and multiple other illnesses as a teenager, and as a result I have permanent damage in multiple systems of my body. I have daily fevers/chills that antibiotics do not work on. I had "allergic reactions" to antibiotics which later I learned were really Jarisch- Herxheimer Reactions. Maybe this might be something to look into for you? Not sure what type of symptoms you had from the antibiotics you were on.

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https://www.lymedisease.org/lymesci-herxing/

The Jarisch–Herxheimer Reaction After Antibiotic Treatment of Spirochetal Infections: A Review

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5239707/

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I hope you don't have Lyme, but if you do test positive for it, the sooner you get treatment, the better your odds for a full recovery are.

I'm sorry for being on a soap box but Lyme ruined my life. I do all I can to spread information on it and the inaccuracies and controversies that exist in the LD community in order to help others not have to go down this same devastating road.

Keep us posted. Sending hugs.