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Being checked for lyme disease
14 Replies
Virg - October 16

Has anyone been checked for this and what does it entail. I understand that maybe a simple blood test isn't the answer. I read up on lymes and couldn't believe the similarities. I also lived in tick area. I'm going to make appointment for this (and my dizzyness-which is pretty bad right now) and want to know what to expect the doctor should be doing to get me tested.
Any help or pointers will be appreciated. Please and thanks.


JJ1 - October 16

I asked this recently on this forum, too. I have a friend who has a very bad case of Lyme disease. She has done a lot of research in regards to her own illness and believes that there are many more people with Lyme than have been diagnosed. She does not remember ever getting the tick bite that caused it. She and her husband grew up in an area known for Lyme but met and married after they both left. When she was diagnosed with Lyme -- after having three children -- she had her family tested because it can be passed in utero and all of her children have it but one of them shows no symptoms. Her husband also tested positive but shows no symptoms. She believes my symptoms sound more like Lyme than fibromyalgia. I don't believe I was ever tested for it. I meant to ask my rheumatologist about it on my visit last week but thanks to brain fog, I completely forgot. One of the things I have read, because Lyme is hard to diagnose, is that sometimes people get treated for Lyme even if it is not definite they have it. The treatment is antibiotics for 3 months. If this makes you feel better, then it is likely you have Lyme disease. I am wondering if a rheumatologist is the best doc to see about Lyme of if there is another specialty area that treats this disease. I should ask my friend.


AmberRose - October 17

Hey virg , im just curious have you asked your doctor about it? Im very interested in what a doctor would have to say on the subject.


Virg - October 17

I'm going to be setting up an appt this week now that I'm all set up here. Will let ya know as soon as I do.


barbar - October 17

I was tested once for lyme disease by my primary physician and it came back negative. I am going to be tested again by my specialist. I really want to be sure to rule it out. I am actually hoping this is lyme disease because at least there is a known cure. I really can't take this anymore. My doctor had to submit verification of my disease and I took a peek and read his evaluation. He says I am 100% disabled and would be unable to work if I didn't have very specific accommodation, such as special chairs for support, etc. I was surprised to learn that I am 100% disabled. I always thought I was, now I know. Now I really feel good about being able to get in to work.


JJ1 - October 18

Here are symptoms of Lyme I found on a website:
1. Rash at bite site or other sites

2. Muscle twitching of the face or other areas

3. Unexplained fevers, sweats, chills


5. Fatigue

6. Neck creaks and cracks, neck stiffness

7. Unexplained weight change (loss or gain)

8. Tingling, numbness, burning, stabbing sensations

9. Unexplained hair loss

10 Facial paralysis

11. Swollen glands

12. Eyes/vision: loss of vision, double, blurry, pain, increased floaters

13. Sore throat

14. Ears/hearing: buzzing, ringing, ear pain

15. Testicular pain/pelvic pain

16. Dizziness, poor balance

17. Increased motion sickness

18. Unexplained menstrual irregularity light-headedness, wooziness, difficulty walking

19. Unexplained milk production (lactation)

20. Tremors

21. Irritable bladder or bladder dysfunction

22. Disturbed sleep

23. Sexual dysfunction or loss of libido

24. Confusion, difficulty in thinking

25. Upset stomach or change in bowel function

26. Difficulty with concentration or reading

27. Chest pain or rib soreness

28. Forgetfulness, poor short-term memory

29. Shortness of breath, cough

30. Difficulty with speech

31. Heart palpitations, pulse skips, heart block

32. Joint pain or swelling

33. Mood swings, irritability, depression

34. Stiffness of the joints, neck or back

35. Heart murmur or valve prolapse

36. Muscle pain or cramps

37. Exaggerated or worse hangover from alcohol

38. Rash at bite site or other site


Virg - October 18

Hi JJ1... thanks, if it's not the same article I read it's pretty close because I do have so many of the symptoms or have had. Let you know what the doc will say.


JJ1 - October 18

As with FMS, I certainly don't have all the symptoms, but the thing that has me wondering if I really have FMS is that I don't have the tender points. I get soreness that moves randomly to different places on my body but it is usually not tender to the touch. My MAJOR problem is fatigue and brain fog. I have quite a few of the Lyme symptoms, but not all. I don't remember a rash and I don't have muscle twitching. Some of the Lyme symptoms that I have that I don't see mentioned for FMS is 1. sudden weight change -- I gained almost 20 lbs inexplicably right before I started seeing drs, all in about a month's time with no real change in eating habits. 2. I get frequent sore throats that just go away after a day with no other cold symptoms. 3. Heart palpitations - I even saw a cardiologist for this who said my heart was fine.


Virg - October 18

I understand what you mean about the triggers. I had sore points when I was first checked for FM but they'd come and go. Now the random waves of pain,,shoulders, arms, legs, etc or flu like aches through the whole body. My immediate weight gain happened when I went into surgical menopause (last ovary removed) The palpitations tremors etc started for me way before fm diag. So it's an all in all interesting phenomena. Like in the article I read one doesn't remember the tick bite . Since I suffered itchy skin that became rashy I didn't think it could have been due to tick bite. Thats why I just hate going to see doctors. They want somethng specific. The dizzyness is whats really getting to me right now so I'll lead in with that.


JJ1 - October 18

Well, I am trying to do some research and it is not pretty. Lyme is only curable in the early phases after a tick bite. Symptoms can be alleviated with antibiotic treatments, but not cured. I have been wondering what type of doc to see about this and one article I read said that you should see a neurologist, infectious disease specialist, or internist specializing in Lyme. Because of my cognitive issues think maybe I will start with a neurologist.


barbar - October 18

I have found an exceptional doctor to deal with my FMS. He's also a specialist with lyme disease and just tested me today. I will let you know how I do. However, he pointed out that it is possible to have BOTH lyme disease AND FMS, which may be why some of the worst cases are so severe. He reminds me of two things when I get depressed: (1) that I have a disease and (2) medical science has no idea what it is. So I remind you all of it as well and note that there is no reason we should hold ourselves accountable--by feeling depressed or frustrated---for their failure. We already have to suffer for it. Anyway, hang in there!


Virg - October 18

Good point Barbar, I just came back from the doc appt and have taken the blood test for Lymes...I mentioned to him that I understood there may be a chance of not having a cure but he gave me that look of his and we both agreed on the antibiotic treatment . So we shall see what the blood work show. I also got some good headway on the dizzyness.


JJ1 - October 19

I was reading an article on Lyme disease and as it was going through the symptoms, it said something aches and pains and in parentheses said "this is referred to as Fibromyalgia, like FMS was a symptom of Lyme Disease. So yes, it does sound like both can be together.


JJ1 - October 19

dang. sometimes I don't make sense when I write these days. Fibrofog or Lymefog or whatever. I hope you can follow what I was trying to say.


barbar - October 19

You're doing just fine, JJ1. Looks like we all are going down the same road, a good one, which is to at least get checked for lyme disease. I had done some research on the tests and I specifically asked my doc to use the test with the least false negatives. I know lyme disease is not curable but I think I'd rather have that than FMS. FMS requires just too many meds. Anyway, let's all keep each other posted.



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