posted
Hi, all. I'm not a Lyme disease patient (not that we know, yet), but I'm looking for answers. A friend referred me here.
For several years I've had recurring episodes of difficulty walking and muscle weakness, triggered by cold temperatures and fatigue. I've had many neurologic tests, all turning out normal. I've also had problems with supraventricular tachycardia, sometimes occuring along with the other troubles, as well as magnesium and potassuim deficiencies. Whenever I'm not having these attacks, I'm mostly normal, though weaker than I was before all this started; I don't have either the stamina or energy I used to have.
I've been tested for Lyme disease (the ELISA, I think), and that was normal, but I've had a couple of people suggest to me that a negative ELISA does not necessarily rule out Lyme disease. I've been through the horrid search for an answer and have gotten many different possibilities from doctors, everything from dystonia to myasthenia gravis (no one is willing to confirm either to me), to the wonderful "it's stress, m'dear, you have a somatoform disorder".
I'm supposed to see a new doctor soon and...well, I'm nervous and kind of afraid to ask him to test me again for Lyme. I guess what I'm asking is...how do you bring up the fact that you want to be tested for a particular thing, taking into account that you've been tested before and your doc may not support your request? Also, if anyone happens to know a good doc in/around NYC, could you please PM the info to me? I'd very much appreciate it.
-------------------- I like cereal. Posts: 10 | From New York | Registered: Sep 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Hey Sparkle*)*)!!
WELCOME*)!*)! !&)!(*)!)!*!*)
You just ask forthrightly with no shame. Go to ilads.org and read up on the testing! You can be completely negative and have Lyme disease or Ehrlichiosis or Babesiosis...
You could definitely have a TBD or something else very much like one- I hope you find out- go to a good LLMD they are experts on Differential Diagnoses of similar diseases- Welcome*)*!)! !*)!*)!*!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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It's kinda funny, when you go through that whole "what's wrong with me" quest, after a while, a normal result insn't necessarily a good thing. I'm not exactly "hoping" for Lyme disease, but I want an answer very much...cold frightens me so much I'm almost phobic.
-------------------- I like cereal. Posts: 10 | From New York | Registered: Sep 2007
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posted
Jaynee, it isn't worth getting another test for Lyme, if all it will be is another ELISA. You need to educate yourself about the testing issues, and get yourself evaluated by a Lyme-literate doc who knows how the different systems of your body can be affected by Lyme--if indeed that's what you have. What kind of doc do you have an appointment with?
Posts: 991 | From California | Registered: Feb 2006
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posted
Just wondering if the potassium and magnesium deficiencies you mentioned could be causing your problems:
Symptoms of Hypokalemia: Hypokalemia ranges from very ornate to severe level. A person suffering from simple/harmless/primary staged hypokalemia may experience no symptoms at all, but general symptoms of hypokalemia are: Fatigue Patient may experience problems such as Myalgia and muscular weakness Patient may experience hyponatremia and also may experience confused i.e. anxiety. Acne problem Skin related problems such as blistering, skin eruptions, dryness of skin etc. Temporary memory loss or problems such as weak memory etc. Patient is prone to heart related problems, such as heart deterioration. Digestive system also may get affected due to potassium deficiency leading to hypertension, improper sleep, nervous system deterioration, depression, constipation etc. In some cases patient may experience ringing/noise in ear.
Magnesium deficiency can affect virtually every organ system of the body. With regard to skeletal muscle, one may experience twitches, cramps, muscle tension, muscle soreness, including back aches, neck pain, tension headaches and jaw joint (or TMJ) dysfunction. Also, one may experience chest tightness or a peculiar sensation that he can't take a deep breath. Sometimes a person may sigh a lot.
Symptoms involving impaired contraction of smooth muscles include constipation; urinary spasms; menstrual cramps; difficulty swallowing or a lump in the throat-especially provoked by eating sugar; photophobia, especially difficulty adjusting to oncoming bright headlights in the absence of eye disease; and loud noise sensitivity from stapedius muscle tension in the ear.
Other symptoms and signs of magnesium deficiency, the central nervous system is markedly affected. Symptoms include insomnia, anxiety, hyperactivity and restlessness with constant movement, panic attacks, agoraphobia, and premenstrual irritability. Magnesium deficiency symptoms involving the peripheral nervous system include numbness, tingling, and other abnormal sensations, such as zips, zaps and vibratory sensations.
Posts: 366 | From MA | Registered: Apr 2006
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I think it's a good idea to see an LLMD, as CALyme said, they can do a differential diagnosis to see what it is if it is not Lyme.
I also got a Somatization Disorder diagnosis even with a positive Western Blot.
posted
Heya, alliebridge. My doc says it's unlikely that my symptoms are due to my hypokalemia/hypomagnesemia, because I have had symptoms even when both have been normal. I have noticed that my PSVT and PVCs are worse when my magnesium is low. So far, they have no clue why I have that deficiency.
jblral, I'm supposed to see a GP/PCP, see if he can refer me to someone else(insurance insists I must have GP referral). From him, it'd be great if I can get referred to an LLMD. I've seen neurologists, rheumatologists, psychiatrists, and cardiologists- except for my hypok-/hypom++ and PSVT, everything is normal.
-------------------- I like cereal. Posts: 10 | From New York | Registered: Sep 2007
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posted
Ask a cooperative doctor for the western blot. I had 4 negative ELISA's (over a 2 year period) and when I requested the western blot from my doctor there was hesitation. I simply stated "hey, can't seem to find anything else wrong, simple enough test to order and certainly more cost efficient that all of the MRIs/CT scans, etc." Western blot was run and sure enough, it was positive.
Of course, keep in mind that the western blot can also be negative and one could still have Lyme but at least the western blot is more accurate. If you have any positive bands, you at least know for sure the direction you should be going.
Posts: 561 | From mass | Registered: Jul 2007
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