Ginger’s Story

I am nearing 70 yrs old and was recently diagnosed with Late Stage Lyme. I have spent years trying to find out why my fatigue was so bad and since the 1990s I’ve only been able to work part time and raise my two girls without crashing from exhaustion which has happened to me while trying to work full time.

It seemed like everyone around me was passing me up, including people older than I was, working longer hours and I could barely keep up with what I had to do let alone wanted to do. I was first diagnosed with hypoglycemia (#1 autoimmune) two years after the birth of my second daughter 1973. I miscarried my third child in the second trimester in 1981. My Doctor said that more miscarriages occur to women who have autoimmune issues such as hypoglycemia. He cautioned that other autoimmune issues could occur as I got older! He was one smart doctor because 6 months after pre menopause surgery for the removal of my uterus I lost estrogen and thyroid was diagnosed with Hashimotos (#2 autoimmune).

I thought, boy was my Doctor right! I now have 2 autoimmune issues! Well, I decided that my fatigue issues were coming from a possible low thyroid that had not been detected all my life but medication did help but did not entirely get rid of the fatigue. I’m trying to be vigilant and keep going from Doctor to Doctor who look at my blood work and say, you are fine! Then Fibromyalgia takes hold when in my mid 50’s. Seek a rheum for this diagnosis, yet all this time I have no elevated blood levels to indicate inflammation seen in other more serious autoimmune diseases like Lupus, MS or RA. My PCP is always pleased with my labs and finds nothing unusual. I leave thinking I know there is something not right still! I was starting to have dry eyes and other drynesses and I sought out a different Rheum at Baylor and asked her if I had Sjogrens. She said no, my labs did not show this. She told me I could do a lip biopsy but she was certain I did not have Sjogrens. I accepted her evaluation with out doing the lip biopsy. Years go on and I’m still not better and worse so I tell my PCP she has to find me a good Rheum that can diagnose what I have as the all over body pain was getting me down. By this time I’m on antidepressants for Fibromyalgia.

Then came the diagnosis of Ehlers Donlos Syndrome a genetic connective tissue disease. I’ve been double jointed in my shoulders all my life and had a shoulder injury while playing softball as a young teen. From the Rheum who diagnosed EDS, I decided to get a second opinion and disregarded everything other doctors had told me and headed straight to another Baylor Rheum who took my suspicions of Sjogrens to heart. I had blood work again not positive and biopsy was positive for Sjogrens (#3 autoimmune). No one but me questioned why I have three autoimmune diseases? Why all this fatigue, pain and low grade fever from time to time. None of these doctors could but all this together and none seemed interested in looking further.

While discussing with a close friend, all my issues she encouraged me to go see her doctor who diagnosed her with Lyme Disease. When I started investigating the symptoms, I was blown away at having every symptom, yet none of my doctors I’ve seen over 30 years put it together. After seeing Dr. Patricia Salvato, my mind was finally eased by knowing how this disease has ravaged my body, my lungs, my brain and my life! I’m currently in treatment and on Doxycycline for yet a few more weeks. Herxing has been bad but I do see light at end of tunnel! Started Low Dose Naltrexone last night and slept the best sleep I have in years!

I’ve not ever been complacent with my health but I need to know why doctors are not taught in medical school to look for infectious diseases? My co-infection is RMSF. I’m in process of going back to my PCP to tell her the news! I’m really wondering if she knows anything about Lyme and why she could not put all symptoms together to make this diagnosis. Are we living in a world void of really great doctors? It seems like it to me! I think one of the problems is most doctors do not use or look at their questionnaires if they even have them. My situation may just be very complex, but why has it taken me all these years to finally get an answer? I still would be looking if my friend had not had Lyme and pointed me in the right direction. There has to be thousands of people dying from Lyme and not ever knowing they had it due to the lack of training doctors get in medical school to recognize it. This is my story and I’m sticking to it! I hope it helps others to keep trucking until you know for certain you are properly diagnosed!

12 Responses to "Ginger’s Story"
  1. Dr. Patricia Salvato is a highly respected Internist but that doesn’t alter my curiosity about what test determined Ginger had “late stage” Lyme disease given there are barely tests that can accurately determine if one is infected at any stage. There is no test that can determine if there are bio film cysts containing live bacteria floating in one’s blood stream and unless it can be determined that none of these cysts exists the prospect of immediate reinfection exists.

    • Unfortunately I have found out Dr. Salvato is reluctant to prescribe courses of antibiotics targeted for lyme disease. She does not utilize ILADS treatment standards. She is good only for laboratory testing and diagnosis of Lyme disease. As of 2016 her practice has been under scrutiny by the TSBME. Your best bet for treatment is working with another Texas LLMD that utilizes ILADS treatment standards or go out of state to another LLMD.

      • I ran across this site while searching information about Lyme Disease for a friend. I felt a need to reply to Phyllis Shaw’s comments about Dr. Salvato. I have been a patient of Dr. Salvato since Feb. 2009. I sought her out following a diagnosis of Leukemia and AIHA in Aug 2008. Following the completion of my treatments for AIHA, I found myself unable to walk without severe pain and my fatigue was so bad I rarely got out of bed! Although I was going to one of the top Cancer Centers in our country, I felt no one was listening to my complaints or thought it was all in my “head”. I had NEVER had these problems before, I had rarely been ill and I KNEW something was wrong …… if only someone would listen. My mood went from feeling suicidal to intense anger with the medical community. Thanks to a friend in San Antonio, I found Dr. Salvato! After multiple test to determine what my problem “wasn’t”, she helped me chart a course to increase my stamina, reduce my pain and fatigue. It took about 6 months to get me to a level I could maintain, thus decreasing my medication and the shots I took 3 times a week. Within weeks of my first treatment, I was able to return to my 60 hour a week job and actually have a life! No, I did not have Lyme Disease but what I can tell you is that had it not been for her “non-standard” course of action, I do not believe I would be here today. I have continued to see Dr. Salvato or Dr. Hart (also in this office) for guidance on my leukemia journey as health conditions change with this disease. Sometimes they suggest a medication; sometimes it might be as simple as adding a mineral or vitamin to my diet. But it works!! …………… One last item….. I think it is very misleading for you to post on the Internet that she is under scrutiny by the TSBME. It makes potential patients wonder what she might be doing “wrong” or “illegally” and to me is somewhat slanderous. I am certainly no expert regarding Dr. Salvato and the State Medical Board BUT I do know what I have read in the past. The HOUSTON CHRONICLE ran a story a few years ago about the Medical Board’s review of doctors in Houston who prescribe pain medication. According to the article, Dr. Salvato’s practice sees 3000 patients annually, 600 of whom have chronic pain. So, naturally, with all they hype about prescription drugs, her practice would be under constant scrutiny. This is a quote from that article: …”Dr. Patricia Salvato, has no disciplinary history. In fact, though Salvato has faced criticism for her prescribing practices, she emerged with a spotless record after a six-month review by the Texas Medical Board ……. Board investigators found Salvato “met or exceeded the standard of care in treatment of chronic pain” ……” I personally admire open-minded doctors who will actually listen to their patients and seek ways to help when traditional medicine doesn’t work.

        • I couldn’t agree with you more Joyce regarding Dr. Solvato. She took immediate action and put me on all of the right anti-biotics for my Lyme disease and continued to change my antibiotics for almost a year to ensure that the infections were gone. She also has given me options for more holistic treatments that have been helping me as well.

      • Dr Salvato has been an enormous help in treating my chronic Lyme. She has used appropriate antibiotics as necessary. I am so grateful for her care.

  2. I am glad Ginger shared her story. I was bitten on June 15, 2016. Went to doctor who just put onitment on it. I was really sick! Then my joints started aching and was told I had osteoarthritis! Finally got a test which will get results in 2 weeks at $599 cost.
    No doctors believe you….Thanks for listening.

  3. I think what stage of lyme one has depends on time of exposure to time of diagnoses.
    Ginger had fatigue in 1990……diagnosed w Lyme 2016 =Late stage lyme.

  4. Salvato has helped many lyme patients, she also takes ins, attends Yrly lyme conf
    Many on lyme FB sing her praises. Tragic w BIG Med center we don’t have better Lyme care!

  5. I have worked with Dr. Salvato for 1 year. When she first met me, I suffered from chronic vertigo, caused by Lyme disease. I could not drive a car. Her rapid identification and three stages of treatment for Lyme disease provided immediate relief. Improvement has continued through today, at which point I am waiting for my blood analysis to confirm that I am cured. If anyone you know is suffering from an undiagnosed illness have them see Salvato and test for Lyme disease. I hope, like me, they get their life back.

  6. I am currently being treated by Dr. Salvato after years of being told that I had severe Rheumatoid Arthritis and have been on disability with no hope. I now have completed my last round of a specific antibiotic treatment that has helped me unbelievably after being misdiagnosed for many years. I had previously been tested by 2 other doctors previously who missed this diagnosis of Lyme disease because as many are seeing that doctors like Dr. Salvato who know what kind of tests to run and how to properly read these tests are critical to the correct diagnosis of this very mercurial and nasty disease. She has proven to me that she knows what she is doing.

  7. I contracted a serious illness in 1989. I went to Dr. Salvato in 1990 (approximately) and she had the good sense to treat my symptoms. About 10 years later, she ordered lab work for Lyme disease. The Lyme tests were run 3 different times by the same lab. All three times, I tested positive for THE SAME BANDS of LYME. Another doctor me that it is not considered Lyme unless you are positive for 5 bands. I don’t understand. Or is it ME/CFS.

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