Over the pat 9 months I have had various symptoms, all getting worse, then better, then worse, then better, etc, etc.
I am 19 years old and last summer I fell off a horse, hurt my back and got a concussion. Because of this, my doctors attributed all of my symptoms to the back injury.
About a month after my fall, my hips began to hurt. As my back got better, my hips got worse, soon I got plantar fascitiis in my feet, and then soon after I got biceps tendonitis in my shoulders. I was diagnosed with hip bursitis, IT Band syndrome on top of all of this. I started getting pain in my elbows around this time as well.
I started physical therapy in winter and nothing improved for quite a while. I had a lot of trouble concentrating in class and was losing my train of thought in the middle of sentences very often. I attributed this to my concussion 4 months previous.
During winter I also developed hamstring tendonitis, this put me at 6 soft tissue injuries in less than 6 months (all bilateral). The muscle pain kept getting worse and worse. It was a burning/throbbing feeling.
I also started to notice that my mouth would stutter on occasion, and I kept dropping things.
About a month ago I stopped eating gluten to see if that was my problem and my tendonitis got better, nothing else has improved. I am starting to get a lot of pain in my ribs. The best way I can describe this feeling is that I feel "dirty". My blood feels....wrong.
The symptoms come and go with no logical pattern.
I got blood tests back (and excuse me because I am not sure of all of the lingo or exactly what the doctor said) but she said I tested positive for lyme, but when they did the further tests, they were all negative. So she thought it was a false positive. I also tested positive in ANA. I got more blood tests, but not another one for lyme.
Should I insist on being tested for lyme, or at least start treatment? I don't know what to do anymore, help.
Posted by kidsgotlyme (Member # 23691) on :
If your first test was positive, then you are positive.
You need to find a lyme literate physician to treat you.
Go to the seeking a doctor section and post there for the nearest doctor near you.
As far as I know, there is no such thing as a false positive with lyme. There are lots of false negatives though. Main stream doctors are very ignorant of this disease, unfortunately for us.
Posted by ardraneala (Member # 31416) on :
yyyeah..i tested positive for ANA as well. Autoimmune diseases can't be cured, so you really have nothing to lose going the lyme route as well (other than money). Some antibiotics can reduce inflammation anyway, so they can be part of autoimmune treatment. I tested positive for scleroderma, which kills you in 2-5 years, pretty much turning you into a human doll.
Posted by ardraneala (Member # 31416) on :
..false positives are uncommon...and i learned that from the US medical licensing guide so...yeah. not that im a doctor.
Posted by erikjh1972 (Member # 20964) on :
yes you most likely have lyme. false positive=highly unlikely. plus your symptoms point to lyme anyway. find a lyme literate Dr. fast.
Posted by Robin123 (Member # 9197) on :
Sounds like Lyme, and I agree, I think you need to post in Seeking a Doctor for one.
If you want, you could let us know what Lyme test was run, at what lab, and what its positive result was.
Posted by Christy1832 (Member # 32160) on :
I think I was positive for IgM, but negative for IgB and Western Blot, and the doctor said this means I don't have Lyme.
thanks for all your help!
Posted by timaca (Member # 6911) on :
Best, Timaca
Posted by Christy1832 (Member # 32160) on :
Thanks I hope the blood results show something. If I can't get an appointment with an LLMD, are infectious disease doctors generally helpful for lyme diagnosis?
Posted by TF (Member # 14183) on :
Christy, infectious disease doctors are the WORST doctors to go see if you think you have lyme. They believe that lyme is rare and is easily treated with 30 days of meds max.
So, save yourself the humiliation you will likely experience if you go to one.
Contact the lyme support groups in your state and in nearby states. See "Support Groups" on left side of page.
They will tell you the doctors who are getting people well.
Also, the best document you can read is the Burrascano Lyme Treatment Guidelines found here:
It will give you an education on this disease and its treatment. You really need someone who is an expert on treating lyme. That means that ID docs and other docs will not be able to help you.
See the list of symptoms on p. 9-10 and mark how many you have.
Migrating pains are a classic lyme symptom. Having problems with your brain also. It is not unusual for the lyme symptoms to come and go at first. But, eventually they will come and stay. My symptoms were episodic for 5 years before they became permanent.
Also, the fall that you had could have been enough of a stress on the body that it allowed the lyme to overwhelm your immune system. That is not unusual. People feel fine until some trauma, and then the lyme comes out. The trauma can be a car accident, surgery, death in the family, pregnancy, etc.
So, your case really sounds like lyme to me. Do all you can to get to the best lyme doctor you can find. The better the lyme doctor, the better the diagnosis and the treatment. We will help you here also.
Lyme doctors know that they cannot diagnose a patient based on tests. The diagnosis needs to be based on symptoms since none of the lyme tests are totally reliable--or anywhere near totally reliable. They are maybe about 50% reliable at best--meaning that they miss half of the cases of lyme disease.
From page 7 of Burrascano:
"DIAGNOSTIC HINTS
Lyme Borreliosis (LB) is diagnosed clinically, as no currently available test, no matter the source or type, is definitive in ruling in or ruling out infection with these pathogens, or whether these infections are responsible for the patient's symptoms. The entire clinical picture must be taken into account, including a search for concurrent conditions and alternate diagnoses, and other reasons for some of the presenting complaints. Often, much of the diagnostic process in late, disseminated Lyme involves ruling out other illnesses and defining the extent of damage that might require separate evaluation and treatment.
Consideration should be given to tick exposure, rashes (even atypical ones), evolution of typical symptoms in a previously asymptomatic individual, and results of tests for tick-borne pathogens. Another very important factor is response to treatment- presence or absence of Jarisch Herxheimer-like reactions, the classic four-week cycle of waxing and waning of symptoms, and improvement with therapy."
What he is saying at the end of the quote is that your response to lyme treatment is another way the doctor knows for sure that you have lyme disease.
So, that's why you really need a lyme doctor to tell if you have lyme or not.
Posted by Lymetoo (Member # 743) on :
With positives being hard to come by, a false one would be rare indeed. Don't believe it.
Posted by timaca (Member # 6911) on :
Christy~ I see two wonderful ID doctors. Not all are closed minded to chronic infections making us ill. However, most don't know to look for chronic infections such as viruses and/or tick borne pathogens. Hopefully the Stanford website will help to change that.
Best, Timaca
Posted by Christy1832 (Member # 32160) on :
Thank you all so much for your advice!!!
I think I am going to try to get in to see a lyme doctor ASAP, because I leave the country at the end of June. Time crunch.
Posted by TF (Member # 14183) on :
There is a wait to see a lyme doctor. And, treatment generally takes at least a year.
I think you would be much better off in this country for the next year or so.
Things can get so much worse with this disease.
Posted by Dekrator48 (Member # 18239) on :
It sounds like the ELISA test was positive and the Western blot was negative(many of us tested negative on the WB).
Here are reasons why a western blot can be negative even though you have lyme and the ELISA was positive:
I agree with everyone's advice and hope you have already contacted a LLMD to get your first appointment.
Symptoms migrate and there are flares with lyme so you can feel your symptoms are unrelated. It is very common.
You can't get well in a "time crunch". Unless you are committed to treatment you will just get worse and worse. They say it is a marathon, not a sprint. When you start treatment you will feel MUCH worse. You want to be close to home and family, not on a trip. I would postpone your trip and get treatment.
Posted by Lymetoo (Member # 743) on :
Christy... a vacation, I hope?
Posted by Christy1832 (Member # 32160) on :
Yes, I am going to Iceland with my best friend for only about 6 weeks. How long are the waits typically to get into a Lyme Doctor?
Would it be worth it to just try and find an infectious disease doctor that I can get into before I leave?
If I can get a diagnosis, I will have to reconsider my trip I suppose.
Posted by Christy1832 (Member # 32160) on :
Yes, I am going to Iceland with my best friend for only about 6 weeks. How long are the waits typically to get into a Lyme Doctor?
Would it be worth it to just try and find an infectious disease doctor that I can get into before I leave?
If I can get a diagnosis, I will have to reconsider my trip I suppose.
Posted by Robin123 (Member # 9197) on :
NO, don't see an infectious disease doctor before you go. They are like 99% standing down on recognizing Lyme and co-infections.
Ideally it would be great if you could see a Lyme doctor before you go, if you're going to go.
Hey, if it takes you this month plus 6 weeks to get in to see a Lyme doctor, then, take the vacation!
A lot of us are too ill to travel, so use your judgement on this.
Posted by t9im (Member # 25489) on :
Christy:
Unfortunately there is the controversy of diagnosing and treating Lyme disease. An IDSA MD will end up indicating the symptoms are imagined or you have CFS, etc.
It�s amazing there is a controversy to this insidious disease and I�ve found it easiest to show a couple of u tube video�s on the controversy.
You have to become your own advocate. You can't trust the main stream medical community on this due to the controvery.
Posted by erikjh1972 (Member # 20964) on :
Listen to Robin 123, good advice.
Posted by LymeAware (Member # 26195) on :
Yes, Robin's advice is good.
I'd say no on the ID doctor. And, if you are well enough to travel, go for it.
But, certainly call and make an appt with an LLMD now, before you go. If you can get in before you leave, great. But, it wouldn't be uncommon for the wait list to be until you get back anyway -- depending on the doc.
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I hope the blood results show something. If I can't get an appointment with an LLMD, are infectious disease doctors generally helpful for lyme diagnosis?