Questions

[CFS56]

I was diagnosed with Lyme Disease in 1995.  It was in April.  I was basically put on a 2 week course of antibiotics and told to go home, take my pills and forget about it.  As far as symptoms at the time of diagnosis I had flu like symptoms and the classic rash at the site of the bite.  Felt some better but the fatigue didn't go away. In Sept my knees swelled all up and I could barely walk. I was so tired I couldn't walk if I wanted to and the day before I went to the doctor I got the most horrendous neck pain with headache I have ever had. Went to an infectious disease specialist and he put me on a 60 day course of doxycycline.  I actually started to feel better, most of the fatigue went away and still had a few problems with my knees but mostly good for a long time.  About 3 yrs later I started having panic attacks and developed arrythmias and having migraine auras without the headaches.  The next year I got horrible tinnutis in my right ear.  It has just progressed from there.  I have severe arthritis in my right hand, have muscle twitches in my face, ear, legs and toes.  Have tons of heart palpitations, have to take medication for that and I'm tired all the time.  According to doctors there is nothing wrong with me.  Could any of this be from Lyme's?  I am really tired of all of this and if there is anything I can do to fix it I would sure like to try.  Thanks for reading

[worththewait78]

Where are you located?  I have a FANTASTIC LLMD that I see.  It's CRUCIAL that you see the right doctor in this process.  Let me know if you need help locating one.

[ewford]

  I live in Williamsburg.  Tell me where you are located and I'll PM you some information.

[JackieCalifornia]

www [dot] lymenet [dot] org / Support Groups / UnitedStates / Virginia /

Take all the spaces out and replace [dot] with . and no spaces.

I haven't used this website for referrals, but you can also simply search online for

     LLMD Virginia

or

     LLMD Charlottesville

or whatever area works, you may also find leads.

We don't post LLMD names in the open here, but someone may send you a private message through this website.  

Ree is right, co-infections are common and often need different meds from Lyme itself.

[CFS56]

I looked at lymenet and couldn't find a referral function.  I go to my opthamologist in a couple of weeks, she is an absolutely great doctor.  I have never talked to her about lyme disease because I didn't realize that my eye problems could be related.  But I will talk to her and see if she can suggest somebody.  I live in Virginia, so if you guys know anybody let me know.  Thanks.

[ree427]

You may also want to consider being tested for co-infections. Co-infections often come with Lyme. I know Bartonella is a co-infection which can cause horrible panic attacks.

[JackieCalifornia]

Welcome to Lyme lands.  Lyme shows up differently in different people, and differently in the same person over time ... tricky, eh.  I'm not medically trained, but off the top of my head I don't see anything in your symptom list that I haven't also seen reported by others w Lyme.  I'm sorry your docs are so apparently indifferent ... but they simply don't understand Lyme, if that's what you have, and in your situation, I would certainly find a Lyme doc and get a work up.  

One reason for the palpitations and twitches, so I read, is that Lyme use up magnesium stored in your cells, and without enough magnesium, the muscle cells don't communicate well with each other, hence the herky jerky movements ... and heart is after all a muscle too.  Since most magnesium stores are held within the cells, a blood test for low magnesium levels won't show up as low until you're really really low, because the body keeps using up it stores of intracellular magnesium, to keep the blood levels stable.  It's a common symptom to have muscle twitching in Lyme.

Joint involvement is also common, as are fatigue and panic attacks.  My eye doc takes Lyme seriously, and he alone among all the other docs I saw, except for my Lyme specialist.

My suggestion would be that you find a Lyme specialist, called by patients "LLMDs", short for Lyme Literate MD, meaning a doc who thinks big thoughts about Lyme diagnosis and treatment.  An LLMD can be any kind of specialist or a GP; it's their views that count.  I just posted a longish answer to 'Lyme in Florida' posted by starrwind, right below your post.  You might read that response, because it applies to your situation too, perhaps.

Your doc who gave you 60 days of antibiotics a while back was quite progressive:  the usual treatment from nonLLMDs is a few weeks.  But because Lyme has peculiar characteristic such as a very slow reproductive cycle, a longer treatment time is needed, as will other diseases like tuberculosis and leprosy, both of which are caused by slow growing bacteria.  Docs think nothing of treating TB with 18 months of antibiotics, but get all weird if a Lyme doc does that.  Dunno why, really.

Your eye symptoms may be related to Lyme; my ophthalmologist was the only one of my preLyme docs who took my Lyme diagnosis seriously, so it seems to be a known thing among at least some eye docs.  

You are imho asking all the right questions ... and don't give up until you get answers that make sense to you!  Please let us know how you do and if you need help finding an LLMD.  I have recently learned that lymenet [dot] org has a referral function, and it's possible that ILADS [dot] org does also.  Take care --

[CFS56]

Forgot some stuff..I was told I have myofascial pain disorder and sent to physical therapy because of severe pain in my back and shoulder muscles.  PT made it worse.  I also have had problems with my eyes, dry eye, vitreous detachment and tons of floaters.  Just am curious how much of this could be related to lymes.