Hey folks, long time no post. I hope all are doing well, well, well as they can be.
I have a friend in my bible study group who is having mysterious symptoms, you know how it is. She is a scout leader and goes out in the woods a lot, and has had ticks on her.
She and I have been talking just a bit, and I told her that many of her symptoms sounded like mine.
For about a year and a half, her many doctors have been stuffing her with steriods which I know is a no no if in fact she could have lyme disease.
She is not taking them anymore.
I am meeting with her next week and bringing some information. I am trying to find the best symptom list for Lyme disease so that she can fill it out and give to her doctor.
Her doctor was going to do a lyme titres test, and i told her that this would not show BB after a long period of time.
We are in South Texas, where...."There is no Lyme disease."
So i told her to insist that the doctor write out a scrip for Igenex.
If you could send me the best information for a person who may be beginning the long road to a diagnosis, I would appreciate it.
It happens that her doctor is the doctor i used to have who said there was no lyme disease in Texas. I know she has to insist on having the correct tests done.
Maybe God sent her to me, to help her.
Please respond.
Loretta, the lemonhead
Posted by cbb (Member # 788) on :
Hi Loretta, So glad your friend is listening to you. Could she go to your LLMD for an evaluation?
I highly recommend she have a copy of "Diag Hints & Treatment Guidelines..." This is the latest edition & is 33 pages of excellent info about all aspects of Lyme & several Co-Infections. Kinda like a Reader's Digest version of Tick-Borne Diseases (TBDs). www.ilads.org/burrascano_0905.html
Pages 9-10 have an excellent list of symptoms with columns to show severity & frequency of symptoms.
Pages 22-25 give info & symptoms of Co-Infections (Babesiosis, Bartonella, Ehrlichiosis). Symptoms overlap with Lyme symptoms.
"When to Suspect Lyme" (by the late Dr John Bleiweiss) is a 13 page essay with lots of good info. http://cassia.org/essay.htm
Edited to add that this link didn't work. Maybe someone knows another way to find this essay.
Lyme is a "clinical diagnosis" based on tick exposure, symptoms, etc with lab tests as supportive info. Be sure to tell her that NO test should be used to rule-out Lyme disease.
If her dr insists on testing, I hope that she can insist on using IGeneX Lab in Calif. www.igenex.com Their website is another good source of info about LD.
Suggest that she join us here on LymeNet. She will find links to just about everything about TBDs & she can ask as many questions as she wants to.
If she clicks Books in the menu on the left, she could order a book, or books, about Lyme. They have new & used books - some real bargains!!
"Coping With Lyme Disease" by Denise Lang is an excellent book for people who are just learning about & trying to decide if they have Lyme disease. Lots of patient stories along with great info on the disease.
For more info, "Everything You Need to Know About Lyme Disease" by Karen Vanderhoof-Forschner has excellent info from a different perspective.
I keep copies of both books within easy reach all the time. They were worth every penny I paid for them. The books may be in your Public Library.
Hope these links will help your friend, & I hope she decides to join the LymeNet Family.
Posted by Lymetoo (Member # 743) on :
This is from Dr B's list:
Lyme Disease Symptoms List 1. Unexplained fevers, sweats, chills, or flushing 2. Unexplained weight change--loss or gain 3. Fatigue, tiredness, poor stamina 4. Unexplained hair loss 5. Swollen glands: list areas____ 6. Sore throat 7. Testicular pain/pelvic pain 8. Unexplained menstrual irregularity 9. Unexplained milk production: breast pain 10.Irritable bladder or bladder dysfunction 11.Sexual dysfunction or loss of libido 12.Upset stomach 13.Change in bowel function-constipation, diarrhea 14.Chest pain or rib soreness 15.Shortness of breath, cough 16.Heart palpitations, pulse skips, heart block 17.Any history of a heart murmur or valve prolapse? 18.Joint pain or swelling: list joints_____________ 19.Stiffness of the joints, neck, or back 20.Muscle pain or cramps 21.Twitching of the face or other muscles 22.Headache 23.Neck creeks and cracks, neck stiffness, neck pain 24.Tingling, numbness, burning or stabbing sensations, shooting pains 25.Facial paralysis (Bell's Palsy) 26.Eyes/Vision: double, blurry, increased floaters, light sensitivity 27.Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity 28.lncreased motion sickness, vertigo, poor balance 29.Lightheadedness, wooziness 30.Tremor 31.Confusion, difficulty in thinking 32.Diffculty with concentration, reading 33.Forgetfuiness, poor short term memory 34.Disorientation: getting lost, going to wrong places 35.Difficulty with speech or writing 36.Mood swings, irritability, depression 37.Disturbed sleep-too much, too little, early awakening 38.Exaggerated symptoms or worse hangover from alcohol