First I want to really thank everyone on this forum! Around April of this year, 2008, I was online researching my symptoms and found some comments here that lead me to take a hard look into Lyme. I live in the San Francisco bay area and was excited to read from you guys about the IGenX lab in Palo Alto.
I'm an RN and for years have been telling people/my patients that Lyme is not here on the West Coast...........wrong! It's alive and well in every county of California. And so is medical ignorance of the disease, as I've painfully demonstrated. So I pledge to be an active advocate for those with Lyme and help educate the medical community so that less people will have to suffer.
Anyway, my symptoms started Dec 07 with undiagnosed pelvic pain. I had every lab and diagnostic test done. The pain lasted a few months then went away. End of April 08 I started having fatigue, dizziness, brain fog, memory loss, concentration issues, creepy skin sensations (notice the use of medical terminology), felt drunk all the time, weight gain, etc, etc. that all increased significantly by mid-may. At first I thought I was just really out of shape. Then one night at work, I almost passed out having seizure like symptoms.
Of course I had to try to self-diagnose, so I went to the best medical resource on earth - the WWW. I found the list of Lyme symptoms, read up about what tests work and which don't and headed for my PCP (primary care provider). It was obvious right off the bat that he was unwilling to think outside-the-box and insisted on taking another route. After seeing him and having all the blood work come back negative or normal, I told him I wanted a neurology referral. The neurologist considered MS and ordered an MRI. THEN, before I could mention it, she told me about this new lab, IGenX, that she just heard about that does Lyme testing. (side note: this is an answer to a very specific prayer before walking into the office). The next day my husband drove me to the lab for testing. July 3rd I recieved the positive Lyme results. I got my new PCP to get me started on Doxycyclin (which ended up being the wrong dose and gave me severe sun reaction). It then took me 3 weeks to find a LLMD whom started me on Biaxin and ordered more tests than I've had total my whole life. I'm 42.
I'm convinced had I not been in the medical field and knew how to get what I needed, I would still be undiagnosed. And it still took me 8 months of symptoms (3 months of serious symptoms) to get a diagnosis. I feel very fortunate after hearing most of your stories of years and years of wrong treatments and diagnosis. So I'm truly humbled by your testimonies!
My co-infection panel came back all negative, but LLMD thinks I'm Erlichiosis + which I agree with. Here's my lab results:
WBC's - low and dropping.
Hemaglobin - low
Vitamin D - High
testosterone - low
Dysbiosis: Low stomach acid, yeast, bacteria, tape and round worm.
Gluten sensitivity (this really sucks!!!)
Lyme + (IGenX)
Food allergy reactions to: chicken, beef, soy, corn, rice, potato, tomato, almonds, banana, orange, eggs, milk, oats and wheat.
heavy metals: negative
bone scan: not done yet, have had two root canals in 2 years.
Advice needed: what about physical therapy? does it help? What immune boosters are helping people? How long might this fatigue go on? Will I realistically be able to go back to an 8 hour job? Or will 4 hours be a good start? (I've been off work 3 months and hoping to go back in 2 more months). Will the gluten sensitivity resolve itself? What about alternative therapy's: Rife, salt/Vit C, etc?
I've read the book "Everything you need to know about Lyme disease", but it doesn't really give any examples of life after treatment or practical experiences. Other than her own and her family's of course.
So I'd really like to hear how long others were on medications, did you use IM meds that made a huge immprovement, how long you were unable to work, how you did when you returned to work, etc.
Med's I'm on: Biaxin, hydrochlorquin, magnesium, Immune therapy, probiotics (3), multi vitamin, B complex, Iron.
Med's finished: Diflucan, Nystatin, another antifungal I forgot the name of.
Sorry this is so long. Thank you for any suggestions and advice.
Lisa Lupner RN