Ehrlichiosis and Lyme Questions

Hi Kansasfella - welcome!

ALS isn't the only thing that can cause twitching...so try not to worry about it.

You've been diagnosed with a tick-borne illness... it's likely you have more than just ehrlichiosis...
To test for lyme - you can get a Lyme WB IgM and IgG from Igenex Lab for a total of $250.
Call them and they will send you a test kit for free...then you need your Dr. to sign the lab req, get the blood draw and send back to Igenex via Fedex.

Lyme can also cause twitching...as well as another confection Bartonella.

I don't know if Ehrlichiosis causes twitching - it likely does....as these infections do hit our nerves - peripheral AND CNS.

I don't know if I'd bother with the EMG at this point.


/igenex.com

I'm curious : Why did your Dr. test for ehrlichiosis .... but didn't think of Lyme?

Thank you very much for your reply! I also forgot to mention that I don't think I was bit shortly before my twitching started. The last time I remember being bit was late October when I walked into a seed tick nest, that was awful! I'm thinking that I've probably had Ehrlichiosis for quite some time, but only ever noticed twitching. That seems rather abnormal, right?

I've been quite terrified of ALS since I googled muscle twitching when it started. I've been much better lately but hearing the doc mention it has me senselessly googling crap even though I know it won't help and I know ALS is a very small possibility. I just really hope that the antibiotics make a difference soon.

I think I'm going to cancel the EMG then, I also don't really see a reason for it at this point. He's probably just looking for money :D

I don't really know how the tests work, but I was told it was a full tick panel where they test for Lyme and other things.

Kansas, many LLMDs have wait lists. I'd look into scheduling an appointment now just in case you need one. If you end up getting better before it rolls around you can always cancel.

KansasFella said...
Thank you, Missouri! I am in Kansas, just a couple of miles from your state ;). I'm sorry to hear about your ordeal, but I'm glad you seem to have it figured out!

If you don't mind, what are/were your twitches like? Mine are every few seconds in my feet and calves and maybe a couple dozen times a day in random places all over my body. The vast majority of them in my feet and calves I can only see, not feel, so they aren't that big of a nuisance. I probably wouldn't have ever even gone to the doc if I didn't scare the crap out of myself by googling ALS, but I'm very glad I went and I really hope that tick disease is the cause.

Thank you for the info! I'm currently in the middle of a 20 day cycle with Doxycycline. Hopefully I have more luck with it than you did. I don't think I'm going to seek out an LLMD just yet, I reckon I should wait and see how this round of antibiotics goes.

I can't remember if my twitching started in the tongue, or the face, but I think it was one of the two.

I the beginning it was just a nuisance oddity that would happen once or twice a day. After about 6 months, I was twitching at least 10 seconds every 5 minutes almost 24/7. My face would twitch all day. Lots of leg, arm, and torso twitching at night. I don't believe I ever twitched in two places at the same time, not sure though. There would be hot spots - usually eyelid and thigh were the longest standing hot spots, but also tongue, glutes, fingers, feet, and calves all took their turn being a hot spot for a month or more. At it's worst I was experiencing Myoclonic jerks- which are Parkinson like limb jerks on an almost daily basis. Those were the scariest for me.

You are very very lucky you cannot feel the twitches. I can, and it will disrupt anything you are doing , including in the middle of speaking a sentence. For me the twitches immediately break my focus of anything I am trying to work on. It makes you wonder if the person you are talking to notice your twitches.

Hopefully the Doxycycline works for you. If not, at least you know the options.

Please let me know if this answered your questions or shoot any more you may think of.

try to get a hold of the lab's test report if you can. The Lyme section may provide more clues, even if it is marked negative. There are specific bands that are unique to lyme even if not enough bands per present to get a positive result.

look for IgM 23. Many of us get only that band detected as reactive. Post the full results here and we'll help you.

KansasFella said...
Thank you, Missouri! I am in Kansas, just a couple of miles from your state ;). I'm sorry to hear about your ordeal, but I'm glad you seem to have it figured out!

If you don't mind, what are/were your twitches like? Mine are every few seconds in my feet and calves and maybe a couple dozen times a day in random places all over my body. The vast majority of them in my feet and calves I can only see, not feel, so they aren't that big of a nuisance. I probably wouldn't have ever even gone to the doc if I didn't scare the crap out of myself by googling ALS, but I'm very glad I went and I really hope that tick disease is the cause.

Thank you for the info! I'm currently in the middle of a 20 day cycle with Doxycycline. Hopefully I have more luck with it than you did. I don't think I'm going to seek out an LLMD just yet, I reckon I should wait and see how this round of antibiotics goes.

I’d be surprised if three weeks of doxy gets rid of the twitching....I would make an appt with a LLMD as a backup plan - it could take several weeks to get an appt.

Thank you all again for the kind words and information! I spoke to my doctor and she assured me that my twitching was almost definitely a result of my ehrlichiosis so I think I'm going to skip the EMG for now and I will seek out an appointment with an LLMD on Monday. I'm going to buy some magnesium and vitamin D tonight! Hope you're all doing well and make a swift recovery if you haven't already!

I answered it in my first response, I tried to anyway.
After testing for vitamin deficiency and lupus, my doc decided to test for tick diseases. I was told it was a "full tick panel", so I assume that they tested for several different tick diseases, right? The results apparently said that I had Ehrlichiosis

Kansasfella, what are you taking for it? You know that cdc says only doxy to cure it but only 20 days, and there is a study that pubmed has that says it will not heal Ehrlichia by itself you have to add rifampin just pointed out what the study found.

Hi, Donjr! I'm currently taking 100mg of doxycycline two times a day. I'll ask about the rifampin at my follow up appointment after I run out of doxy.