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.
Posts: 9 | From Evanston, IL | Registered: Jun 2011
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
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.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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posted
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.
-------------------- Listen. That's all we ask. Posts: 172 | From toronto | Registered: Apr 2011
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posted
yes you most likely have lyme. false positive=highly unlikely. plus your symptoms point to lyme anyway. find a lyme literate Dr. fast.
-------------------- 3 months Doxy 8 months of Tetra 7 months of Biaxin/Plaq. 4 months Doxy/Biaxin/Plaq. 5 months Biaxin/Plaq. Back on Doxy/Biax/Plaq On the road to recovery. Trying to make people Lyme Aware....... Posts: 289 | From R.I. | Registered: Jun 2009
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posted
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.
Posts: 13117 | From San Francisco | Registered: May 2006
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posted
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?
Posts: 9 | From Evanston, IL | Registered: Jun 2011
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
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.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
With positives being hard to come by, a false one would be rare indeed. Don't believe it.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
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
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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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.
Posts: 9 | From Evanston, IL | Registered: Jun 2011
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
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.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
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:
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
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.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
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.
Posts: 13117 | From San Francisco | Registered: May 2006
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
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.
-------------------- 3 months Doxy 8 months of Tetra 7 months of Biaxin/Plaq. 4 months Doxy/Biaxin/Plaq. 5 months Biaxin/Plaq. Back on Doxy/Biax/Plaq On the road to recovery. Trying to make people Lyme Aware....... Posts: 289 | From R.I. | Registered: Jun 2009
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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.
Posts: 232 | From Oregon | Registered: May 2010
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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?
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