I listened to show, and saw this so here is what I just sent Peter:
Peter, I really enjoyed listening to the show from the vault today! I'm from Iowa, and someone from www.lymenet.org gave the link of how to hear it, etc. So I just finished listening to it as I read the message board today.
GREAT SHOW! Dr. was excellent as well Jim's presentation. Most informative for the amount of time you had.
For your next show, please address these issues more:
1. giving the web site below on 300 OTHER illnesses that lyme mimics; it's a long name so I don't know how that would work. It has info from Natl. Institute of Health, USA, of citations for various illnesses.
2. Since lyme attacks the major 4 body parts: kidneys, lungs, heart, and brain, I'd like to see more info on the brain portion.
I know Dr. mentioned something about a cat scan or MRI taking photos of the LESIONS in the brain. Please clarify that for next show so others can think about having this expensive test done.
I resultly had neuro psychiatric testing done as I want to know if I have neuro lyme of the brain or is it early-onset Alzheimer's/dementia?
I had memory, intelligence, and MMPI..Minnesota multi-phasic index of 567 true/false questions if "if, and, or" used in each question so you could determine either way.
My results showed 3 areas of concern plus these diagnosis: depression, HYPOCHONDRIAS, and SOMATIZATION disorder....meaning I have the real physical pain "but I'm not dealing with this effectively and thereby developing more physical health problems"!
You don't know what a slap in the face that is being called a hypochondriac and "it's all in your head" issue again by a psychologist who knows NOTHING about lyme disease even though I gave him specific info written on neuro lyme! He didn't use any of the comments at all.
3. mention more about having WESTERN BLOT IGM & IGG done testing ALL 16 protein bands for ALL strains of lyme. In USA, that means these 2 diagnostic labs only:
Igenex, www.igenex. com or
md labs, www.mdl.net
ANOTHER TOPIC: I have tried getting Social Security Disability Insurance, SSDI, benefits since Aug. 2000 without any success.
They really fight to aprove: lyme, fibromyalgia, chronic fatigue, depression, mental illnesses, etc.
I'll have my 2nd administrative law judge, ALD, hearing next month in Des Moines, Iowa unless this ALJ would approve me on the latest 150 pages of medical reports, labs, sleep apnea, and neuro psy testing recently sent to him.
Wish me luck..ok.! If I am not approved this time, I'm dropping it. I need to move on to a more relaxing atmosphere vs. stress of redundant red tape paperwork from SSDI.
Turning 56 this week, and I did work 30 years 7 months! Thanks for letting me sound off like this Peter.
Betty G
Here is my brief story too.
July 04, I was finally diagnosed with late-stage, chronic lyme after being misdiagnosed for 34 years! I'd seen 50 plus drs. to date to get this diagnosis.
I've been diagnosed with 30 illnesses/symptoms including:
late stage lyme disease, diabetes 2, sleep apnea, restless leg syndrome, fibromyalgia pain, chronic fatigue, migraines, TMJ, osteoporosis, multiple chemical sensitivities (allergic to most smells including cigarette smoke & on their clothing, perfume, after shave, hairsprays, office & cleaning supplies, etc.); acid reflux, hiatal hernia, and extreme super sensitivities to light/glare/reflections and sounds/noise plus more!
In Iowa, I discovered does NOT have 1 full-time lyme literate MD, LLMD, in our state! We do have some infectious drs. who are not lyme literate and do NOT treat patients with lyme full-time.
Iowa does have a handful of LLMDs who will treat only ONE lyme patient per week for a maximum of 20 lyme patients. We take a lot of time to see because we have so many things wrong with us, and on so many different types of meds for our countless illnesses.
Lyme disease mimics 300 OTHER illnesses, and that's why it's so hard to get the correct diagnosis! I was raging mad until I found this fact out.
See this site for the list of 300 other illnesses and NIH, Natl. Institute of Health's citations about them including these:
Parkinson's, ALS, mental ilnesses, MS, FMS, CFS, IBS, etc. and was posted on www.lymenet.org. Hope you each find some good info there. Saw it's from Art Dougherty, Calif. in 2001.
http://www.geocities.com/lymeart3/misdiag-links.html#disease
other 300 medical condtions mimicking lyme disease w/citations and author's
name, Art Dougherty, Calif., 2001, is at bottom of site page!
http://www.geocities.com/HotSprings/Oasis/6455/misdiag-links.html
We need to have the WESTERN BLOT IGM & IGG blood labs sent to ONLY 2 USA diagnostic labs: IGENEX and MD LABS.
======================================
They are the only 2 labs who test for ALL 16 protein bands for ALL strains on lyme disease!
Elisa is NOT effective; my 2 were both negative.
My western blot IGM & IGG were also sent to the prestigious Mayo Cllinic in Minn, which came back NEGATIVE. They tested 1 for 2 bands only, and 2nd for 5 bands only...both NEGATIVE! From Mayo's results, I lost my previous faith in Mayo Clinic's reputation.
Lyme disease eventually causes us to lose, quit, or be asked to resign from our jobs since we no longer can perform to our previous potentials.
Then we file for Social Security Disability Insurance benefits based upon our lifetime of employment.
SSDI fights our "invisible" illnesses like: lyme, fibromyalgia pain, chronic fatigue, and the mental illnesses. I've been in this frustrating, endless red tape of sending me the same forms over & over now for 4.6 years!
Maryland NEEDS to pass LD SB 596.
All states need to be approving long-term treatments for all of us late-stage lyme disease patients, insurance coverage, and NOT prosecuting the LLMDs who have chosen to try to get us back to "remission" since we can NOT BE CURED!
We can not thank these LLMDs enough for taking their medical oaths seriously, to treat ALL patients. Thank you all.
Betty G, Iowa