Oh, and thank you for the advice!
I have been taking magnesium, but will try taking more. I bought Epsom salt (with Lavender and Chamomile), but still need to use it. I had a bit of a set back yesterday, but I also noticed my stomach was really bothering me. The pollen has been horrible here, so that may also be part of the issue. I received a card from the gi doctor that I need to schedule a follow up to discuss the results of my biopsy of my stomach and esphogus. My CT scan showed that I may have gastritis, so hopefully if I can get my stomach in order, everything else will fall into place.
Heh heh. I have Lyme Brain this morning...keep forgetting things.
I also wanted to say that I have significant vagus nerve involvement with my disease. I have tachycardia (my resting heart rate was well into the 90's w/ sustained periods of time in the 125-155 range), increased BP, shortness of breath, and significant GI issues. The 10th (vagus) nerve controls all of these functions. I have found that magnesium supplements really help, as Lyme uses up the magnesium in the body. Blood tests rarely show it as 95-97% of the mag in our bodies is in our tissues, not in the blood. A supplement ending in -ate is better absorbed by the body, such as magnesium sulfate (epsom salts). I take 500-600mg/day, which is about the most you can do without getting the runs. Epsom salt baths for 20 minutes or so also help. Try it for a week and see if it relieves some of your symptoms.
I ended up on a beta blocker to get my heart rate down, which really helped me to feel better and to reduce dizzyness.
One more thought, Lyme mimics many autoimmune disorders because it attacks the brain and nerves, as well as organs and low-oxygen tissues, like connective tissues in the joints, ribs, and adrenals. It is important to eliminate these other diseases before pursuing treatment for Lyme, and vice versa. Antibiotics given incorrectly are unlikely to hurt you. But immune suppressing drugs given incorrectly will be make a Lyme patient sicker.
I wish a negative blood test excluded Lyme, but it doesn't. Most doctors believe the tests are perfect, but in reality they miss about half the cases.
I was negative on the blood screening test as well as on my CSF test. As I grew more convinced I did have Lyme, I asked my GP to authorize blood tests at IGeneX. They do more advanced testing. There, I was barely "equivacol" on the screening test (which would be "negative" at other labs), positive by IGeneX (but CDC negative) on the IgM Western Blot, and negative by both standards on the IgG Western blot. According to "official" medical standards, I need to be positive on the IgG WB in order to get diagnosed. This has been hotly contested ever since it was implemented in the late 90's with hundreds of doctors who treat Lyme complaining about how it misses to many cases. It took an LLMD to diagnose me, as they recognized the Lyme-Specific "bands" on my Western Blot.
The Lyme bacteria prefer to live in tissues, so as they migrate out of the blood, our bodies produce fewer antibodies, somes too few to show up on antibody testing. People who have been sick over a year and people who are the sickest are the ones who usually test "negative" as their immune systems aren't fighting the disease as much anymore.
I went through 12 doctors before I found an LLMD to treat me, and I am showing significant improvement. There's no doubt I have Lyme Disease. The terrible misinformation and misunderstanding in the medical community about Lyme has been devastating for patients.
If you can't get answers from doctors on your condition, you might revisit the Lyme question. You can also read about others' experiences on the Lyme Disease forum. I do hope you have something more easily cured than Lyme!
Lyme Disease test came back negative. My EBV VCA IgG (>749.9) and EBNA were positive, and IgM was negative. Gastro didn't find anything. Some of my symptoms are improving, so I am waiting to see what happens at the dizziness and balance clinic next week.
Thank you so much for the information. I had blood sent off a couple of weeks ago to check for Lyme disease, and the test was cancelled for an unknown reason. I had more blood drawn today, and should have the results in the next couple of weeks. Fortunately, my doctor is friends with a Lyme disease specialist, so she is ready to have me see them if that turns out to be the problem.
Sorry... Forgot the link to the doc with the symptom list.
http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf
There's also good info on Columbia University's Lyme and coinfections pages.
Stop taking the steroids immediately! You could very well have Lyme Disease and the steroids suppress your immune system, letting the infection run wild. This is what happened to me!
Lyme disease definitely infects the vagus nerve, as it has in me. Check out this document with a thorough symptom list and see if it's a possibility for you. Note: most people with neurologic Lyme do not have antibodies in their spinal fluid. I tested negative in my CSF and 4 doctors believed that excluded Lyme! It does not!! I finally tested positive on a Western blot at IGeneX, a specialty lab in CA, after I tested negative on a screening test at a military hospital.
If you can't get Lyme confirmed or excluded by your regular doctor or neuro, find a Lyme Literate Medical Doctor in your area. Local Lyme support groups are helpful. Lyme is complicated and tricky, contrary to what most doctors were taught that it's hard to get and easy to treat. Most were taught that neurologic Lyme is so rare, most physicians will never see a case, unless perhaps you're in Connecticut or Wisconsin. Unfortunately, it seems that most people with neurologic Lyme are simply not getting diagnosed properly and see dozens of doctors for years, suffering all the way.
It can cause permanent damage, so please don't hesitate. It took paying out of pocket for IGenex testing and a consultation with a well regarded LLMD for me to get diagnosed and start treatment.
You can learn a lot about Lyme and it's coinfections on www.ilads.org
Beware a doctor who tells you a month of antibiotics will cure it. You'll need long term antibiotics from someone who wants to cure you, not leave you sick forever with the so-called "post Lyme Disease treatment syndrome".
Feel free to message me if you'd like to hear more. I have neuroborreliosis and a coinfection of bartonella.