Glad to see this topic. I could go on for hours about both Autoimmune Diseases (AD) and Lyme from a personal perspective. I'm in my early 60s now but have had medical issues that are either related to or directly caused by AD. In my youth, I had several episodes of abdominal problems which led to hospitalization. Then as a young adult, my problems increased and soon I was diagnosed as having Colitis or Chrones debated by the Drs I had seen. The problems worsened to the point that I was constantly passing blood and an exam showed that my colon was cancerous and fully involved so I had a total Colectomy and now have an ileostomy. The surgery lasted more than 27 hours with surgeons spending time tying off thousands of blood vessels that had developed to feed the cancer. They ultimately abandoned the surgery leaving me with a rectal stump which was less involved than the majority of the colon they removed. Over time this has been monitored and healed. At the same time this was happening my bloodwork showed my liver was also failing. I traveled to the University Hospitals in Pittsburg at the time the premier place for liver diseases. They did a full workup and sent me home saying that I would ultimately need a liver transplant as a result of PSC. Less than a year after the colon surgery my liver numbers where at the point my Drs couldn't understand how I was continuing to function, I was still working 50+ hours per week when they told me anyone else would be laid up in the hospital waiting for their transplant. I'd been listed for a transplant about 7 months when I was told I was at the top of the list nationally based upon the numbers from my bloodwork. My skin was a putrid orange and my eyes glowed yellow like some freaky Halloween monster. They kept telling me I had only a short time to live unless I got a new liver. I received my transplant at Froedtert Hospital in Milwaukee Wisconsin in early July of 1999. As a result I've taken immune system suppressant drugs ever since to prevent my body from rejecting the new liver. In the weeks and months that followed I had several follow surgeries to address poor blood flow to the new liver.
About 18 months after my transplant follow up tests showed I had lesions growing in the biliary tracts. Biopsies showed it was cancer and something had to be done about it. My Drs suggested an off-label treatment that was being used in Europe for esophageal cancers, the procedure known as PDT (photo dynamic therapy) involved using a drug that would be administered by IV and over 24-48 hours it would collect in my skin, eyes, and in cancer in my bile ducts. They then passed a flexible laser into the ducts and exposed the cancer to a specific wavelength of light. Forty eight hours later they scoped the bile ducts and were amazed to find healthy pink tissue, the cancer had been eradicated and sloughed away. For the next two months while the drug remained in my system I had to keep myself totally covered from head to toe and wear super dark sunglasses anytime I was near sunlight. I would be uncovered indoors because the incandescent light did not contain the specific wavelength of light that would trigger the drug they had given me.
A few years later the cancer returned and they repeated the PDT once again and I've been clear of cancer in the ducts ever since. However following the second PDT treatment my platelet levels started to fall. They plummeted to the point that they had to had count them because the diagnostic equipment failed to find any. My Drs tried several treatments to address this but in the end I was given Immunoglobulin and it finally stopped my body from destroying platelets they were giving me via IV and over time my body started building up my platelets on its own once again. This occurred twice more before the Drs found a correlation between this Idiopathic thrombocytopenic purpura (ITP) and me getting Heparin for a medical procedure.
Several years passed and follow up scans revealed I had a lesion on my left kidney which turned out to be cancer. My Drs froze about the lower 1/3 of my left kidney to eliminate the tumor.
Again several years passed and I started to feel palpitations and I tired easily, this was diagnosed as a result of Atrial Fibrillation and medication was added to address this issue.
This past November while working I noticed I would tire easily, things deteriorated to the point while at work one day I'd have to stop and sit down after taking only a few steps and I would not catch my breath. I was taken to the hospital and told I had a heartbeat of under 30 bpm and that they would be inserting a temporary pacemaker while trying to determine the cause. They never found a definitive cause, suggesting that I had doubled up on my meds related to the Afib. I was certain I had not because I have a weekly pill dispenser case that I use and it was not missing any extra doses. They implanted a permanent pacemaker the next day.
Then in mid February of this year I developed terrible migraine headaches, ear pain, and dizziness that lasted for more than a week and did not improve with medications provided by my doctors. The ear pain increased and I experienced hearing loss. My doctors tried high dose steroids, antifungals, antivirals and nothing helped. Ultimately I was referred back to Froedtert (the regional teaching hospital and level one trama center) where I was admitted and they repeated many of the same tests and tried a combination of multiple IV drugs in an attempt to remedy my issues. The barrage of blood tests they did yeilded no real results. Ultimately the infectious diesase team concluded that on the panel for Lyme Disease two of the five results came back as positive. They typically look for all five as positive before concluding the issue to be Lyme Disease but they hypotesized that due to my liver transplant and the drugs I was taking the results were to be construed as positive for Lyme Disease. I'd had no sypmtoms related to a tick bite or Lyme Disease but that is their determination. They had taken spinal fluid for testing during this same time and the results showed that I had meningitis as a result of the Lyme Disease. They continued to treat me with various combinations of antibiotics and other drugs but my hearing loss and vertigo continued to get worse by the day. They exhausted all available drugs in an attempt to deal with my illenss but finally stopped when nothing brought positive results. I've lost all hearing in both ears and over the last 6 months my vertigo varies day by day. Sometimes I find it impossible to walk without aid, other times I've able to concentrate and work just fine. A distraction however will cause me to lose my balance and I'll have to catch myself.
Its been six months and I have seen no improvement and my Drs do not hold out any hope for either my hearing being restored or my balance returning to prior levels.
This is a quick summary, I'd be happy to go into greated details if anyone is interested. I'll be eagerly watching this thread for other posts.
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