Hi,I need to find a LLMD in South Carolina,I found one in NC but I can not afford to see him, my condition has prevented me from working for over a year.I have a appt with a new MD this week,I hope he is not another in the box thinker like the others I've seen,I was tested in 2005 but test was negative and I know the test are not accurate but all my symptoms turn to Lyme.In 2001 I was exposed to a hundred or more deer ticks at one time and have not been the same since.
I am sorry you have been sick for so long. Unfortunately, there are not many Lyme knowledgeable doctors. The closest one I know of is in NC. From what I understand, he will be relocating to the DC area sometime next month. You may want to see if there are support groups in your state and if they can recommend someone.
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
It is very important to see a kowledgeable 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 Many doctors do not understand Lyme and treat with outdated protocols.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. Is this the test you had done?
Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. It is estimated that 60% of people who have Lyme are co-infected. 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.
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.
Hi Ticker thanks for the quick reply,I just tried phoning Dr.Jemsek as well as the SC Lyme association but got no answer from either,also sent emails,perhaps one will reply.Looking at your list of symptoms I have around 20 or more and have for several years.I have a copy of the test and here is what is reads ordered- ana screen,lyme Igg/Igm. Further down it has 18,23,28,30,39,41,45,58,66,93 all negative. Next is B. Bougdorferi ab,lyme igm 23,39,41 all negative. That test was done in 2005,in 2006 I had bw done not searching for lyme and found I was ANA positive and got the run around trying to dx lupus which was found negative by a reumotologist but never tested for lyme again.Wonder why my ANA would go from neg to pos in a year although I have read it can be normal in some?
Hi, it shows Quest Diagnostics in Atlanta.At this point in time I am very limited to who I see due to income issues and state provided insurance.I try to make the best of the visit when I see a new doctor,I got a appt this Thur with a new MD that accepts my insurance,perhaps he can help in some way,if not I'll continue suffering.It's a tough road!! When I get treated my these doctors I usually walk out with a script for a Antidepressant,I have went to a Mental health clinic since 2004 and tried all sorts of meds, the therapist seems to think it is physical in origin and not mental or rather secondary to something else going on.They give up on me last month and referred me to another mental health office.Most of my symptoms do not add up to depression/anxiety, the pvc's that come and go, the leg tingling, strange hives that come and go, swollen lymph nodes under my arms and groin that come and go, several months of night sweats last year that have not since returned, aching muscles, constant fatigue, dizziness, ringing ears,flu like feelings ect.I know others with clinical depression and they do not experience these symptoms at all. I really do not know what to do,I have a 6 year old that I feel I have missed out on her complete childhood so far, kinda sucks when you can not work but have no explanation to tell the inlaws or anybody else that thinks this guy is lazy if you know what I mean, at one time I was a success, great job, race car, my own side buisness, nice home,happy and energetic but seems like I made a total 360 and lost it all,now the simple things to do in life are hard.I told my wife after I'm dead they will say hey here is what this guy had,wonder why he never got it checked out??
Hi Hyper- your name says it all- from your post, it sounds like you are really feeling the frustration of wanting to be the type A person you are but this illness is holding you back. Lots of people on this board understand your frustration at having no identified reason for the lack of ability to be themsleves. And like you have experiences, the frustration does not end when you find out it is Lyme. There is a long road to find the right doc that is covered by insurance and will use the protocols that can work for you.
But you sound like you are on the right road and that is positive. I pray you will find this new doc helpful. I had an LLMD use Quest as well and everything was negative. But he also knows enough about the clinical diagnosis to call it Lyme and start proper treatment.
It sounds like your immediate family is being supportive. I hope that is true. Lyme affects the whole family- not just the patient.
Best wishes for reliefe soon- reading through posts on this board, you will see that improvement IS possible!
No wonder so many people are on anti-depressants. The doctors out there use anxiety/depressions as a crutch. They can't tell us what's wrong with there usual tests so it must be US. We are depressed or anxiety ridden. What BS. I've been in this body my whole life and I think I know when something is physically wrong with me.
So many people are on anti-depressants and pain meds. it's crazy. The root of the problem is not being found. I refuse to be one of those people loaded up with overpriced drugs. My app. is on Oct. 3rd with a llmd. Thank god. Well, good luck, mc
I agree 100% Mctassi , I tell them sure I'm depressed and anxious feeling because I'm sick and the sickness come first, to be honest I have no idea what to say to this new doctor I'm seeing this week without convicting myself and walking out with a script for a AD,perhaps he will be different than the others and listen?
I know. It's hard because if you go in and tell the truth about your symptoms they look at you like your crazy. I wish I knew what to tell you. Of course we are depressed and anxious. We have something that is going to kill us eventually and no one can find anything wrong. It's like being in an episode of the Twilight Zone. But your scared to kick and scream too loud about your symptoms because then they just think you REALLY are crazy.
Did you ever see the episode of star trek when Spock puts his hands on that rock creature and can feel it's pain? It would be great of doctors could do that. They would say "wow, you really are sick. We need to help you right away" I always feel gun shy when I go to a new doc. It's terrible. Before hand you start to get your hopes up. Maybe they will find something. Then the let down. They run some tests and nothing shows up and you end up at a dead end. I go to a LLMD soon. I at least know he will take me seriously.
Have you seen a LLMD yet? take care, mc
Hi, cant locate a LLMD in my state, I made several calls today to our states lyme association as well as a email,maybe they will reply back. I think lyme is very wide spread in our state than documented because of the patients being passed off as having CFS or depression.Seems there would be more doctors specializing in these types of illnesses
Hi,just a update on my visit today with a new MD.I told him my history of symptoms and how they all began after being exposed to a hundred or more ticks,I saw his reaction after I said a hundred or more on two occasions as if I was joking but I'm not. I told him about my energy levels, swollen lymph nodes, the past night sweats, muscle aches, headaches ...............Can you beleive he prescribed a antidepressant, are they the stinking cure for everything? I never gave the slightest hint of depression!! He did order a lyme test,cbc and some other blood test that will be back Friday. He said give the AD a try and that I may have Lyme regardless of a negative blood test due to my symptoms and if they persist after 4-6 weeks on the AD he will send me to a infectious disease doctor to get checked.I have been down the antidepressant road before and they do not help with my symptoms!! He also prescribed a course of steroids and a antibiotic for my sinus infection.
wow hyper that sucks! Really what is up with all the anti-depressant prescriptions? How crazy is our medical system and the docs. that hand them out like candy? If people with lyme are depressed a big part is because docs like them say "there is nothing wrong" . There is nothing worse than to have a real physical problem and have the medical community tell you it's because your depressed! They are not curing the illness. What is the differance between them prescribing drugs and just going to the bar for a beer to drink your problems away? That's really what they are doing to a lot of people. The bar is more fun and cheaper. Plus we're not supporting the greedy drug companies! Why don't they say go smoke some pot you'll feel better. Oh, I forgot the drug companies don't get a cut. Happy Days Guys, mc
Hi hyper. It is terrible that there are so few Lyme doctors.
I am sorry your appointment did not go well. I cannot believe he thinks an anti-depressant will help these symptoms! Please know that people who have Lyme should not take steroids. They can make symptoms much worse.
Hi, yep it kinda sucks,I dont plan on taking any of the meds he prescribed.Perhaps Friday my lyme test will show something this time, not saying I hope I have Lyme but at least I will have a clue on what's going on and move forward to some form of treatment.What gets me is the word FATIGUE must mean depression in there eyes or these guys are getting a ton of money by pushing the antidepressants.I'll keep pushing forward as money allows and keep my head up.I'll post my results this weekend.