Hi, my name is Sallie, I have been on the ms message board but now i am thinking it is lyme disease. I have so many of the symtoms more so than ms. I had no idea what lyme disease was until my doctor wanted me tested for that and ms. I also have pars planitis in my eyes that is the reason for the test, so i am waitng for my mri appt. and to have all the blood work done. Before the pars planitis dx the doctors told me also it was depression and acted like i was crazy. I just pray that the test show something so i will finally know what is wrong. What is the outcome with lyme disease? Does it get better once your on the medicine for it? Which is worse lyme or ms both seem to be horrible, I am so scared!!!
Hi sallie, can you tell me what pars planitis is? What does it look like. Are they little bumps on the white of the eye? If I had to choose between lyme and ms I would choose lyme. Lyme is so tricky. Just getting a dx is hard. Igenex is a good lab. Ticker has a list of symptoms. She lists them all the time check out one of her posts. Most of us have had the docs think we are crazy or depressed. You can do lots of research on the internet about lyme. Good luck. mc
We can all understand the frustration of trying to get a proper diagnosis and the treatment you need.
Below is a Lyme symptom list. You can have any combination of symptoms.
Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol
When Lyme disease is a possibility, it is very important to see a knowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. No test is completely reliable, and results can vary by lab. It is my understanding that the ELISA or titer is the least reliable test and the one most doctors run first.
Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected, and it may affect treatment choice and progress. It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA.
Are you in northern or southern CA? If you would like a doctor recommendation, let us know.
Recovering from Lyme can take time, and it is normal to feel worse before feeling better; however, with proper treatment you can get better.
It is also important to learn as much as possible. I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses (on-line). He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the book "Everything You Need To Know About Lyme Disease (2nd edition)" by Karen Vanderhoof-Forschner.
I cannot tell you how it gladdened my heart to see your post when I came on the Lyme board today. I have been told that my Lyme information is not welcome on the MS board so I will not be going there anymore but I am really glad I was able to have you consider it before I stopped posting there when I saw people in limbo land but had symptoms similar to Lyme. I was in that position on the MS board for months until I found Lyme.
Do not be surprised if your Lyme tests come back negative. The most used tests, Elissa and Western Blot are not very accurate. The ELISA tests for antibodies you produce in the early stages of Lyme (IgM) and the western Blot tests for later stage antibodies (IgG). From the sound of your posts here and MS, you are not in the early (4 weeks) stage so your ELISA will likely be negative. The Western Blot is a test where the results depend on the lab you use and what your body is doing with the Lyme. It is common to have a false negative.
You will be very lucky if your regular Neuro diagnoses and treats you properly for Lyme and it's associated co-infections. Lyme is a very controversial disease and you should learn as much as you can about it so you can advocate for yourself and find a Lyme Literate MD. This board will be an immense help. Look for Ticker!