I am 38 years old and have developed a number of nagging ailments over the last couple years that I suspect may be related to lyme disease but I am unsure because my symptoms don't seem to be classic indicators of lyme disease, seem too low grade or could be a series of other unrelated things. I have not talked to anyone that has had lyme disease that has had a similar experience. I am hoping someone that has had a similar experience will read this and provide some advice to help me decide to persue this further or not.
I have been tested for Lyme disease, ELISA and Western Blot, about a month ago. The results were negative. My doctor's, GP and rhuematologist seem to have ruled out Lyme Disease. My symptoms seem to wax and wane. Is there a better time to be tested based on the cycle of your symptoms?
About two years ago my wife and I decided to have a house built in upstate NY. Before we purchased land, we visited the wooded site several times. One night after being on the property earlier that day I found a tick near my arm pit that was engorged. I removed the tick and called my GP the next day. My GP told me to watch for a rash and any flu-like symptoms but not to worry. I never had a rash or immediate flu-like symptoms.
We bought the land and had our house built. Shortly after moving in our new neighbors warned us of Lyme Disease as many on our street have had Lyme Disease.
Since we moved in I've had a series of symptoms, most of which I have been unable to get any kind of diagnosis to explain the way I feel.
The first possible symptom I remember is having a strange headache on the left side of my head above my ear but towards the top of my head. Its not a terrible pain. Its more an annoyance than anything. Pain relievers don't seem to effect it. I had a CAT scan that showed nothing. My doctor put me on something for migraines and that did nothing. I still have this pain on a daily basis but not constantly and with no regular pattern. On the onset I would have a stiff and creaky neck that seemed to go with the headache at times.
A few months later I started getting this strange pain in my chest on the left side that would move around from my sternum to my collar bone to my shoulder, my arm pit and in my arm. Mostly this pain is mild but on occasion can be sharp. This pain comes and goes as well but I never go more than a few days without feeling anything there. My lymph nodes in my chest at times can be tender when touched.
Shortly after this I started feeling a lot of soreness in my ribs and abdomen that would come and go. Pain like gallbladder pain except I will get the same pain in the same location but on the other side or sometimes in the back. Thinking back I have had a lot of what I think were gallbladder attacks shortly after purchasing the land. I had an ultrasound that revealed a small polyp in my gallbladder. Mild pain seems to come and go and every few months or so I will get some sharp pain that may last two weeks in this general vicinity but not exclusive to my gallbladder.
I also seem to be prone to cracking my ribs or something like that when I put all of my body weight on my rib cage. I would hear a pop and be in a lot of pain for a month.
I experience occasional twitching in my eye lids, face, flank, arms and legs. Twitching in my legs usually occur with muscle cramping. Occasionally my body will suddenly and uncontrollably jerk.
Lately I've been feeling joint pain that moves around from joint to joint elbows, shoulders, wrists, fingers, toes, hips, ankles and knees. I have pain in the bottom of my left foot near my pinky toe that stays constant for weeks. I've seen a Rhuematologist and I show no signs of inflammation that he can see on X-rays, examination or blood work. My GP did say I had an elevated RF but subsequent tests for RA don't show that anymore.
I also have acid reflux which seems to have started around the time we bought our land.
The following user gives a hug of support to kid_dynomite: tiges (10-08-2011)
I am sorry you have been feeling crummy. First, no Lyme test is completely reliable and reuslts can vary by lab. Regardind the Western Blot, although the CDC requires many bands to show for it to be positive, many people who have Lyme do not have that many bands show. Often, Lyme doctors focus on which bands show. Some are specific for Lyme. It is important to be tested by a Lyme reputable lab such as IgeneX in Palo Alto, CA. They have more sensitive testing and list more bands. I suggest that you get copies of your results.
Although a bullseye rash is a definite sign of Lyme disease, only about 50% of people who have Lyme ever get a rash. It is very important to see a knowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. Besides Lyme, ticks can also transmit several co-infections including Babesiosis, 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.
To me your symptoms sound like Lyme disease and possibly co-infections. You had a tick bite, your neighbors have had Lyme, and you have symptoms. Babesiosis can cause chest symptoms and headaches and Bartonella can cause swollen lymph nodes. Do you ever have shortness of breath or night sweats? Lyme symptoms wax and wane like you describe and migrate around the body.
Below is a Lyme disease symptom list. You can have any number 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
I know of three Lyme doctors in NY who come highly recommended: in East Hampton, Armonk, and Hyde Park. Would you like one of their names?
Hang in there okay? Good help is available and you are not alone.
Hello and welcome, you have come to a great site with wonderful people. From your symptoms, I would say you most definitely have Lyme. The good news is that it is curable.
I am also a New Yorker and from my own personal experience, New York has the worse labs for testing Lyme Disease in the U.S, interesting because New York has one of the highest rates of Lyme Disease. My blood kept going to New York Labs for 5 years, always negative. Those labs were Quest and Labcorp.
Finally, I met a doctor who sent my blood to IgeneX Labs located in Palo Alto, California and I finally tested positive for 2 forms of Lyme (Lyme itself and one of it's coinfections called Ehrlichiosis).
The reason why IgeneX is the most accurate lab in the U.S. is because they use 100% pure lyme antigens compared to Quest and Labcorp who do not use 100% lyme antigens (they skimp to save money). I was told this (off the record) by a reputable Lyme Doctor.
Please don't waste any more time and get your blood sent to IgeneX Labs who has their own website. We are not allowed to post websites here. That's all I can say about that.
I pray that you take the right steps so you can get on a treatment protocol soon. After almost 10 years of having Lyme, I am finally getting better and getting my life back. I have met people who have been cured, so there is hope!
Good luck to you and please keep us posted,
HI KID dYNOMITE,
I chased symptoms like yours for 2 years.Had a tick bite with rash,took doxy for 4 days until my doctor called and said I was negative for lyme and probably was having an allergic reaction to the bite! I stopped the Doxy after 4 days!I was so wrong! A year later i had the muscle cramps,brain fog memory loss and most notibly the twitching.My doctor tells me (the lyme specialist that is,I fired all other doctors),that the muscle and jiont pain is not inflamation but actually nerve pain,thats why antiinflammatories don't work.Lyme loves the nervouse system and thats where I'm mostly affected.It's crucial you find a real LLMD like Dr. Burrescano in new york.I even treated myself with doxy for 3 months through the vet while trying to convince someone that this was Lyme.The lyme support group in my area told me that vets understand this disease better than most doctors.They treat a dog for lyme for 6 months but a human 3 weeks?I got remarkably better on the doxy even only taking 100mg 2x dailey.I know,everyone here says it's inadequate,and it probably didn't eradicate it completly,but my pulsating eye twitch went away after 4 weeks as well as my neck,shoulder and knee pain.My son now takes that dose dailey for acne,so why are these doctors reluctant for everyone to be on this longterm???I'm sure he'll be taking it through his teenage years,and it has helped tremendously.
One other point I'd like to make,do you use artificial sweeteners?diet soda,mints,or gum?If so stop immediatly,I read an article about how aspartame can reactivate lyme,and felt alot better after discontinuing it's use.
Good luck in your search,I felt a lot better after finding this site with people going through the same thing.: http:www.rense.com/general5/lyme2.htm
All my tests came back negative (so I thought it was in my head), until my new LLMD sent my blood work to Igenex. That was positive. Be persistent.
You have enlightened as to why the 800mg of motrin I took this morning isn't helping my neck pain. My LLMD did suggest that the infection was affecting the nerves behind my neck. Do you know of any non-addictive pain medication that works on nerve pain? Of course, I will discuss this with my LLMD next visit, but sometimes it helps to ask about a certain med. I don't look like I'm in pain and when I ask for a certain pain med which I know calms down the pain, I feel like I'm being labeled drug addict. I know what works for me, but I don't even like to ask a dr. for certain things. One dr. gave me three different things just to avoid giving me a narcotic. She gave me naproxen (doesn't work), skelaxin (that's the only muscle relaxant I can take and function), and some patch to put on my neck. I even tried the skelaxin for a couple weeks thinking that maybe it needs to be taken regularly to be effective. No help. The patch just made my skin numb. I am constantly icing or applying heat. I don't know what to do or which type of doctor to see. I was hoping the zithromax would loosen things up if it was the lyme.
As a young adult, I didn't know who to go to with my panic attacks and intestinal problems, so I lived with it. Then when the hip and shoulder pain developed. I didn't know who to complain to, so I didn't. I just didn't go to the dr. much. Ok, the one time I did, the dr. made me feel foolish. I didn't mention lyme because I didn't know much about it. I feel I have a very hard time with dr's. taking me seriously. I just don't look like someone who is sick or in pain.
Thanks everyone for all the advice. I will be looking for a LLMD. I sent an email to one of the lyme disease sites mentioned in this board to get a reference. Ticker, if you or anyone knows of a LLMD in the Albany area please let me know. I've been trying to find a good doctor and like you all know it is not easy.
Allow me to rant...
I had to fight with my GP to get him to even test me for Lyme. When my test came back negative, I mentioned that the tests are not reliable and could not be used to rule in or out lyme disease. I was hoping he would listen to my symptoms but instead he cut me off and asked me what I thought the chance of getting a false negative was. I said, "I don't know, what is the chance?" He said it was very rare and asked if I had a lot of stress or if I was depressed. He tested my rheumatoid factor. This came back slightly elevated so he told me over the phone I had rheumatoid arthritis. He said take Ibuprofen.
I tried to get him to refer me to someone who could follow up on this better thinking I would be better off with an infectious disease specialist. His office seemed to be avoiding my request. I tried to get an appointment myself and no one would take me without a referral. My insurance does not require a referral to see a specialist. After several days and calls my doctor's office told me they had set up an appointment for me with a Rheumatologist (not what I requested) for the next day. "Didn't so and so tell you?" At least it was something. So I went.
At first the rheumatologist seemed alright. He didn't automatically rule out lyme. He confirmed that I could not be diagnosed with RA with just an elevated RF. He did x-rays, more blood (LabCorp) work including testing me for lyme. Everything came back negative. When I asked him about pursuing lyme further he said it was not likely because people with lyme generally have joint pain in only one or two major joints like the knee. He left it that I should see him in six months unless I had a flare up before then. I did have a flare up. I went back. He looked at me like I was crazy, like a dog looks at a human when they don't understand. The same look my GP gave me. He signed me up for a bone scan. I'll be doing that tomorrow.
I can't stand doctors. At least not the ones I have been to so far.
Thanks again for the support. It helps when dealing with the arrogance.
Last edited by kid_dynomite; 01-05-2006 at 03:05 PM.
Your story sounds very similar to mine. I went searching for a diagnosis here in NY (Long Island) for 5 years. Every doctor I went to told me that Lyme was also rare (what a crock!), and they also told me it was all in my mind, I knew better.
I also was bit by a tick (never saw the tick), but I got a rash (not the typical bulls eye, but a different type). As Ticker said, less than 50% of people even get a rash.
As I said before, you must get your blood sent to IgeneX Labs (they have their own website) to see if you are coinfected as most people who contact Lyme also get at least one of the coinfections. You will need a doctor to sign for the test.
As far as finding a doctor in Albany, I don't think there are any LLMD's in that area. Most people here on the site have to travel (some travel to different states) to see a reputable LLMD.
Can you drive down to Hyde Park as there is an excellent doctor there. I forgot the name of the doctor but I can get it for you.
Please don't settle for a doctor that is "not" lyme literate because you don't want to waste time getting the proper treatment.
This is a great site to talk about anything, frustrations, treatment advice, feeling depressed, whatever.
Please keep us posted, you will get better!
All I would like to know is what do life insurance companies know that we don't. I can't increase my life insurance. Lyme is on their list of medical conditions you have to disclose to them. They said I can't increase my coverage because of my recent positive result. That scares me a little. And what if our medical insurance ever changes? Am I not going to have coverage because of a pre-existing condition?
Why do they waste money on an Elisa test? I knew nothing about lyme disease or testing back in 2000 when my dr. gave me a test. She said it was routine, but I think because I mentioned my 5 years of aching hips and shoulders she decided to test. I was surprised it was negative and thought I would find an answer to all the pain and every other ailment I had. I was always active and healthy, so something had to be causing this.
My theory is that they do a routine test to get you to drop the issue and just live with the pain and other symptoms. I'm not blaming drs. They get scrutinized for so much these days, which makes you wonder if you are getting proper medical attention.
I forgot to mention that I was told by the rhuemetologist that I have fibromyalgia.He said it's pain with no known cause.YEAH RIGHT!He tried to give me an antideppressant to raise my serotonin level so I wouldn't feel pain so much!Thank GOD I didn't beleive him,like lots of other people who are really suffering with LYME.He was supposed to be a Lyme expert also and had his own lab for tests!Then there's the nuerologists who may likely tell you you have MS based on MRI tests that show scarring on the white matter of your brain.Luckily for me,I was warned by a guy whose wife was in a wheelchair for 3 years with "MS"that was indeed LYME.He warned me not to see a neurologist because that's their favorite diagnosis and it's a long dark road of chemo drugs and others if you beleive that diagnosis.He said ONLY see a LLMD.My LLMD said I have scarring or lesions on the white matter of my brain caused by Lyme.He said "It's either MS or Lyme and we KNOW you don't have MS.If not for that guy,I may have went to and beleived a neuro.KNOWLEDGE IS POWER.
My parents both have Lyme Disease. We have been through the mill down here in LA, having been told for years that there is no such thing as Lyme Disease in our area. This doctor used to not believe in Lyme until he got it. Now he treats chronic Lyme patients. You might want to see if you can get in touch with him to find a good doctor: http://www.mentalhealthandillness.com/tnaold.html