Symptoms not common to Lyme

1)       Brain lesions 2)       Disappearing/reappearing rash. Can show up anywhere. Lasts only a few minutes usually. 3)         Erythromelalgia. This is when the hands or feet (hands in my case) get very red and painful. Any exposure to even moderate heat sets off a flare. Even when I’m not flaring they still hurt. 4)       Optic Neuritis   I have tons of other symptoms. These are just the ones I never hear anyone else mention.

Thanks Girlie. I hear you and that’s what I keep telling myself. Problem is I've only heard 2nd hand about people having even one of these weird symptoms let alone all four. It’s just scary having symptoms that are unusual for even Lymies. Not that I wish any of this on anyone. It would just be nice to know I’m not the only one like this.

Hi Akkami. I have brain lesions on MRI such that docs here want to diagnose MS. However, I also just tested positive through Igenex (IFA positive, and CDC IGM positive 31+++, 39+, 41++, 83-93++ ). This was my fourth Igenex test (they have always been negative but showed exposure), although clinically diagnosed and treated for Lyme in 2007.

Just started treatment for this relapse and hoping for full recovery, but wanted to say that yes, brain lesions caused by Lyme do happen. Also had optic neuritis 20 years ago.

Optic neuritis did clear, but not perfectly. Still some minor residual effects - difficult to track things that cross my vision quickly, but eye pain left and didn't return. Worried about every little twinge any time I was over tired, but interestingly, when I was recently asked which eye was affected, I couldn't remember.

Your concern about the optic neuritis is certainly understandable!

I have read absolutely everything I can about MS versus Lyme. This all started with left side trunk and leg numbness after a trip to Ontario in 2005 where I was bit on the left leg by something - I thought spider bites, but who knows.

The neuro here diagnosed MS on the basis of a 10 minute ER visit, before the first MRI even happened. I started doing research, and found that MS is a diagnosis of exclusion and should only be diagnosed after every other possibility has been eliminated, which did obviously did not happen. Differential diagnoses include Lyme. Started checking into that because of bites, visited only LLMD in Canada at that time, and was clinically diagnosed. Igenex showed IND on 31, 39, and positive 41 and low bartonella titre. Enough to be very suspicious.

So much of what I've read (peer reviewed journal articles) say lesions are virtually indistinguishable, and it is way too emotionally difficult for me to waffle between the two. Neither option is wonderful, but if I have to have one, I choose Lyme, which is at least treatable.

Plus, docs here don't look for Lyme, and they will never find what they aren't looking for.

I'm fortunate that I don't have a lot of pain, usually low back. But I do have a drop foot and absolutely atrocious balance. I'm probably seriously dating myself, but my theme song is one I remember from when my kids were small - "what do you like about weebles, weebles wobble but they don't fall down".

So sorry for the length of this response, but it's important to remember that Lyme can affect any body system, and it hits us all differently. You do have a positive Lyme test and I hope it helps to know that someone else shares your uncommon Lyme symptoms.

I wish you healing and good health.

Volyme - I have said those exact words, "If I have to have one, I choose Lyme" - because as you said, it's treatable.
I chose to have an MRI of the brain - no lesions showed up, but then I just questioned whether I had the MRI too soon.
But, now with the Igenex IgM positive, I have rested on Lyme. (except on a bad day...then I start to question again)
I'm from Canada and I think I know what Dr. you're talking about.

Akkami - I don't think your 4 symptoms are rare - I know the eye issues are common, and so are the brain lesions - that's why people get misdiagnosed as having MS. It's not uncommon.

Now you need to focus on treatment and getting well. (Just passing some advice on that someone from this forum gave to me when I was questioning my Igenex Postive test).
Good luck!!

Girlie - I totally get what you're saying about questioning what we're dealing with. It's kind of like the saying about weather in Alberta "if you don't like it, give it five minutes and it will change". That was my mind until I got the CDC positive, and then again after family doc said he didn't believe result because it was a US lab. Arghh!

But I am also now rested on Lyme (until I have a bad day, I'm sure). Yep, I think you do know which LLMD I was referring to. He's from BC.

One of my favourite quotes has always been "Don't follow where the path may lead. Go instead where there is no path and leave a trail" by Ralph Waldo Emerson. I just never considered that it would mean being on the leading edge of an emerging health epidemic!

Good luck to you too.

I think the rash is pretty common. I read that a lot with different co-infections too. I get rashes aaaaaallllllllll the time, and hives. They kind of just show up at their leisure, hang out for a while and then just vanish. They usually don't bug me much, but I imagine the average person might find them, especially the hives, really irritating. I think I'm just able to ignore them because I went 8 days once with hives the size of dinner plates covering my entire body, followed by a month of full body smaller hives, and then later on I had another month of full body regular size hives. So, needless to say, I am pretty used to ignoring them by now, hahaha.