Hi, I'm new to the board looking for some help and possible answers. I'm a 23 year old male in good shape. I've been bitten by a tick in the past and thought nothing of it. About 2 months ago I started showing strange symptoms that aren't going away and they are really effecting my life. I have been to numbers of doctors and they have found nothing. MRI of brain, chest and sinus xrays, and all kinds of blood work, including a negative ELISA test. My symptoms are severe headaches, very dizzy all the time, sensitive to light and sound, insomnia, weakened muscles and twitching, sore neck and shoulders, increased heart rate when standing (which I never had before), night sweats, achy joints and the list goes on. I work as a landscaper in PA and I'm exposed to tics everyday, so I figured lyme could cause it. My normal physician told me that its all due to stress, but I finally got fed up with her and I'm going to see a LLMD this month. Can anyone relate to this? And I thank you in advance !
I had a similar experience. Went from being very fit and health to one sick puppy, I bounced from doctor to doctor and was told my symptoms were due to drinking too much soda, stress, nothing, and (my personal fav) that I had dementia.
I was lucky to find an LLMD and she began treating me based just on my symptoms. She drew vials and vials of blood my first visit and sure enough, the results came back positive for Lyme.
Get to that LLMD as fast as you can!
In addition to Lyme, it's a good idea to get tested for co-infections also. I have Bartonella in addition to Lyme and while taking the drug to kill the co-infection, I improved greatly.
I didn't push hard enough for answers when I first suspected something was wrong with me.
If you need the names of good LLMD's in PA, you can post the town you live in and folks will pop in with recommendations.
I totally agree with Micky. Same symptom progression here, same runaround with docs, same negative testing. Found an LLMD who diagnosed me with Lyme. I am glad you are seeing one! Trust NO other doc with the ruling out or in of Lyme or it's treatment.
Read Dr Burrascano's advanced Lyme topics paper on the web. It has a great symptom checklist. Educate yourself- you'll need it. People with Lyme have to diagnose and fight for themselves. It is a very complex, misunderstood and controversial disease.
It sounds like tick-borne infections could be a possibility. Which doctor will you be seeing (you can use initials if you prefer)? When is your appointment?
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
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
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
Headache
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
Lightheadedness, wooziness
Tremor
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.
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. 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.
Good luck at your appointment! Let us know how it goes okay?
Hi am a 23 year old female and was really healthy and athletic, the way you described your syptoms is exatly how i feel, but its been going on for two years now, i see you've gotten alot of good advice from people with lots of knowledge all i can say is that i can relate to the fullest extent, and i also need to caution you of doctors who arent LLMD, ive seen about 50(no exaggeration) and i had to diagnose myself order my own igenex tests, and i do have lyme i was bit hiking when i was 18 and it layed in my body for a few years before i became syptomatic.
Best of Luck to you, my heart goes out to everyone who has to go through this horrible experince.
I had the same kind of symptoms.I had dizzyness,ringing in my ears ,Pnemonia that lasted 6 weeks,,aching joints,shortness of breath ,swerling of lights in my eye, a buzzing in my head like static,sensations in my scalp face,arms legs severe fatige,couldn't sleep couldn,t eat {lost 14 pounds }Thought I was going CRAZY . I went to ten differnt specialists.MY primary care doctor sent me to a pulminary specialist who treated the Pnemonia and ignord all my other symptoms. I went to the ER who said I was having panic attack I went to walk in clinic they took X-rays and said I still had pnemonia I had a cat scan came out clean. I when to my eye doctor said I had eye migrains I went to a neroligist who said I was having PMS symptoms I should lye down for a week I went to my ob/gyn Who said I was perimedipausal and gave me prozac .I went to my husbands primary care doctor because I couldn"t stop crying because I knew there was something more wrong with me He told me I was depressed after hea ring all my symptoms he put me on Zolft I finally went to a ear nose throat specialist and finally tested for Lyme which tested positive.4 months latter I have cental nervous system damage and a PICC line I am seeing an infectios desease specialist I feel I"m on the road to recovery. finnally Thank god for my family who drove me to all these doctors and believed that I knew I didn"t feel right .
thanks everyone for your replys.... I'm just curious as to if any of you test negative for lyme through a blood test and still got treated for it ? If so, did you show any improvement ?
Hi One. I tested negative several times and I am getting treatment from an LLMD. They know that LD is a clinical diagnosis where most others do not. The government clearinghouse on Lyme even says so as does the CDC. I cannot say that I have gotten much better yet. I've only been on meds for 2.5 months. some slight stuff has gone away and other stuff like nerve pain has gotten worse. Because of these changes, the LLMD thinks the meds are working but wants to wait another 3 months to say for sure so maybe not. LLMD put me on neurontin today for the nerve pain and I am on a small does of Zoloft for the dizzyness. For backgrund, I have had symptoms for 18 months and the LLMD thinks I got bit at least a year before that becuase I was hit so hard neurologically right off the bat.
hi moxie - just curious... did you get a positive lyme test through an infectious disease dr or from Igenex? i'm in a similar situation, and my infectious disease dr. lab tests keep coming back negative. i want to do the igenex test, but that's going to take a lot of saving up for me. just wondered what steps you took to get the positive test.
