Lyme Disease Community
Is this Lyme?
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This forum is for questions and support regarding What Causes Lyme Disease, Diagnosing Lyme Disease, and Joint Pain. Topics for discussion also include Living with Lyme Disease, Babesia, Bartonella, Rocky Mountain Spotted Fever, Anaplasmosis, other Tick Borne Diseases, Nervous System issues, Prevention, Risk Factors, Skin Disorders, Symptoms and Treatments

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Is this Lyme?

I'm in limbo as to what is wrong with me and thus what to do about it.  I have had neuro symptoms for 10 years that weren't so bad, but I did notice.  It started with left sided weakness and mild tremor in those muscles and occasional bouts of incredible sleepiness.  Fast forward to 5 years ago and I got his with incredible fatigue, far more frequently sleepiness (strangely more pronounced on my left side of my brain), unrefreshing sleep, muscle stiffness (again, far worse on left side), nerve pain, bad tendonitis in heels, knees, elbows that comes and goes, tremors, jerks at night and some during the day and the list goes on.  My vision seems weird, like if I look too far left or right I get double vision.  I also have had a uptick in anxiety (provoked most likely by feeling so bad) and depression.  My doctor has tested me for everything he can think of.  MRI showed non specific white matter but neurologist said not MS.  The neurologist did find that my tsh = 0.032 and FT4=>7.7, and the retest by my GP was tsh=0.132, FT4=1.77 (upper limit of normal). He said this is hyperthyroid and explains my symptoms.  I see an endocrinologist next week.  My GP has told me to go to a LLMD for an evaluation.  I feel like Lyme is the convenient explanation for everything under the sun, but I don't have any other ideas and apparently neither do the doctors I've seen.  I had one Igenex test come back IGM positive back in 08 but I couldn't tolerate the huge abx they put me on with no ramp up and no following me so I stopped and figured it was not that.  I'm very confused on what to think but I feel so crappy I don't know what to do with the limited financial resources I have.
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Welcome to MedHelp Lyme --

     -- and good for you for not giving up in sorting out what's ailing you.

You say:  "I also have had a uptick in anxiety (provoked most likely by feeling so bad) and depression."  Actually, anxiety is a common effect of Lyme -- not only from being stressed out, but also due to direct biochemical effects of a Lyme infection.  So it may well not be you -- it's the Lyme.  After effective treatment for Lyme, the anxiety goes away.  

(Side note:  In the meantime, you could also take magnesium supplements ... Lyme bacteria use up magnesium in your system, and that leaves the jitters and anxiety.  I took magnesium when I had Lyme, and it helped a great deal -- any formulation ending in '-ate' is said to be most absorbable:  magnesium malate, orotate, aspartate, etc.  Be sure to tell your doc(s) that you are taking magnesium supplements so they can factor that in to your symptom array.  Some docs don't think magnesium supplements matter, but it made a BIG difference for me, fwiw.  I still take magnesium supplements every day, and it's quite soothing.)

You say, "My doctor has tested me for everything he can think of."  That's typical of a well-meaning MD, but so many docs do not understand Lyme that they often don't know how to test for Lyme.  Some of the tests are not very accurate.

You say, "MRI showed non specific white matter but neurologist said not MS."  Unfortunately, neurologists as a group do not tend to take Lyme seriously or understand it at all.  If your thyroid levels are off, it may be a side effect of Lyme or whatever, and a Lyme specialist will be aware of the situation as a possible indicator of infection, but not the last word in what you are dealing with.  It's like your car having a flat tire, but the mechanic says 'the *car* is broken.'  

You say, "My GP has told me to go to a LLMD for an evaluation."  That is what I would do, if I were again in your situation.  Specialists like neurologists often have a very narrow view of what you may have, but a GP often seems more possibilities to consider.

You say, "I feel like Lyme is the convenient explanation for everything under the sun" -- actually, it seems convenient because it's an infection that is spreading widely and infecting more people.  You also say, "I don't have any other ideas and apparently neither do the doctors I've seen."

Docs not understanding Lyme is not unusual, because Lyme is a relatively new infection spreading rapidly, and many docs do not pay attention to new and emerging diseases -- they figure they learned everything they need to know in medical school.  (I remember when AIDS first arrived ~30 years ago, and the docs reacted in the same way they are reacting to Lyme now:  they said not to worry about AIDS, because unless you were gay or from Haiti, *You Could Not Get AIDS*.  Whaaaa???  So docs don't have much imagination sometimes.)  

You say, "I had one Igenex test come back IGM positive back in 08 but I couldn't tolerate the huge abx they put me on with no ramp up and no following me so I stopped and figured it was not that."  I'm not medically trained, but your body's reaction to the antibiotics probably CONFIRMED your Lyme infection:  When the Lyme bacteria are killed off by the antibiotics, they release a bunch of chemicals in your body that make you feel lousy for a while.  It's called a 'Herxheimer reaction' ('Herx' for short).  Your docs should have taken notice and maybe reduced the dosage of your meds so that the die-off was not so strong.  

Reducing the medication is NOT something the patient should be, because it can result in weakening instead of killing the Lyme bacteria, which can then become resistant to the antibiotics.  Result:  super-bacteria that may be resistant to antibiotics, and that is BIG trouble for all of us.

You say, "I'm very confused on what to think but I feel so crappy I don't know what to do with the limited financial resources I have."   You might go back to the first doc who started treatment, or find another Lyme doc and start over.  Be sure the next doc knows that you had a too-strong Herx reaction previously so they can progress more carefully.  Unless you really don't like the first doc, consider seeing him/her again -- why?  because that doc was wise enough to test through IGeneX labs, and that is the sign of an MD who likely understands well how to diagnose and treat Lyme (and its co-infections that often come from the 'Lyme' ticks).

If you decide to go a different MD, and if you do not already have in hand *full, detailed* copies of your tests from your earlier MD, request copies from the old doc (and always keep a copy of all test results for your own files just in case it's useful in the future).  Old test results are often very useful to a wise doc.

Given that your diagnosis was already made, your expenses may be limited largely to medication, which would cost you no matter where you go.  I remember the misery of Lyme, and it was worth every penny to get rid of it.  There are Lyme charities who may help fund your treatment, two of them being LymeLight Foundation and (if you need more testing) Lyme Test Access Program (Lyme-TAP).

Whichever MD you see next (whether it was the Lyme doc you already saw, or a new one), be SURE the doc knows about your overly strong Herx reaction to treatment.  They can adjust things to avoid that problem, but don't adjust it yourself.  That way leads to drug-resistant Lyme bacteria.

Let us know how we can help -- best wishes to you -- and now go get well!  ... and keep us posted.  Cheers!
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Avatar_f_tn
I think I forgot to say in my earlier post:

I searched online for Lyme doctors and organizations near Knoxville and got some good leads!  For example, there appear to be:

  --  Lyme Disease Association Of Tennessee, in Maryville TN (not too far from where you are, perhaps?)

  --  a Facebook page about Lyme in TN

and others.

Groups like that often have quite good leads and insight on which docs and clinics are good.

Sounds like Lyme is all over the place in TN, which is the bad news, but the good news is that there are lots of people dealing with it who can be good sources of information and help for each other.

Keep us posted!

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Avatar_f_tn
PS  the search phrase I started with was:

         LLMD knoxville TN

and that brought up some good leads too.
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FYI, I was misdiagnosed for 25 years and seriously it can be the root of many other illnesses. I had a hip replaced at only 45 from it, hypothyroid, IC, diabetes, vision issues etc. Going to an LLMD is the best thing.

I had to finally go on disability and get Medicare for my health insurance. It's an expensive disease.
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