Wierd Symptom

[blimeyitslymie]

Hi folks,

I have the wierdest symptom ... I always forget to mention it to the doctor because it only happens when it starts to get hot outside. I would be curious if anyone else experiences this, and if they know the cause of it ...

When I start to get overheated I get very itchy, just before I break into a sweat (by nature, I don't sweat a lot) ... then when the perspiration begins I get a really tingly sensation ... ???

Thanks,
Blimey

[Sonsie]

Blimey, been there, done that. I've been known to have complete meltdowns, in public, sort of like toddlers do, when it gets too hot. :o

I think (but am not positive) that one of the co-infections, not LD, is responsible. I don't have any active co-infections at the moment (but they are waiting to leap back into action at any moment, I'm sure), so I've not had this happen lately. Then again, we haven't had any heat waves yet. :rolleyes:

The itching is due to the fact that your nerve endings are irritated by whatever is going on.

Be good to yourself, OK? :)

[blimeyitslymie]

Thanks, Sonsie. I have noticed this has gotten worse as I have gotten older and didn't know if it was hormonal or if I've just had Lyme and co-infections longer!

I am trying to be good to me! I always seem to put everyone before me ... the kids are getting older now and a bit more independent so that helps a lot. And when I do put me first, I somehow feel a bit guilty. I understand inllectually that if I don't take care of me, I can't take care of the others, but emotionally I still struggle with that from time to time. They say practice makes perfect, eh? I guess I'll keep practicing. :-)

[Erin]

I wonder if you're having a problem similar to Uhthoff's Phenomenon.

In Multiple Sclerosis, Uhthoff's happens when an MSer's temperature is elevated, like being outside in hot temperatures, after taking a hot shower, when suffering from a fever.

Since Lyme is called an imitator of MS, and has similar symptoms, I wonder if that's what's going on when you get all itchy when it's hot.

I've been diagnosed with MS, but I have suspicions that it might be Lyme (I dont expect it to really be Lyme tho) I do get Uhthoff's sometimes, but not all the time.

[blimeyitslymie]

Thanks, Erin. That's interesting. I've never been diagnosed with MS, although have had brain scans and other tests, which my docs used to r/o.

Apart from the itchy, tingling stuff, I definately don't deal well with the heat. I get amazingly cranky and feel like it's harder to breathe, especially if it's humid heat.

[Erin]

I was sitting outside with my parents yesterday...one of the truly warmer days we've had recently (been raining a lot here)

I was sitting in the sun, wearing black shorts...after a little while my leg near my knee started to feel really hot from the sun, like I was getting a sunburn. After a few more minutes, it started to itch like crazy.

I remembered your post in here, so I sat there for a few more minutes and then went inside to my freezing cold basement and sat down there for a few minutes. The sunburn sensation went away after a few minutes, and the itchy sensation went away about 10 or 20 minutes later.

Went outside a little while later and was able to replicate it again.

I think it's like Uhthoff's phenomenon, heat makes the symptoms worse, and it's probably common in both Lyme and MS because of the similarities between the two diseases.

[Sonsie]

Erin, thanks for telling us that this has a name! :) I'll try to remember that the next time a family member is hissing at me because I'm having a tantrum in public. :D

Since many of us late-stagers are running around with MS and don't know it, it is something else to be aware of and mention to our LLMDs. I know two Lyme-MS folks whose non-LLMD doctors were unable to ID MS via the usual ways. They both finally found a LL neurologist, who discerned it immediately. (Both were also under care of LLMDs -- hence their ability to find the right neurologist.) In addition to Lyme's "great imitator" characteristics, MS is often a consequence of untreated late-stage Lyme. :(

Do you ever get this after a hot bath? If people have Uhthoff's Phenomenon, that's supposed to be part of it. I hardly ever take baths, but I'm going to watch for this next time. Meanwhile, I'm off to check out real estate ads in Alaska.... :cool:

[Erin]

We dont have a bathtub right now...took it out to make a nice handicap shower for my mom (she had knee replacements). We are going to convert another of one of our bathrooms so that it'll have one of those nice walk-in bathtubs with the door and the seat.

I sometimes notice things after a hot shower tho. Especially when the optic neuritis I had/still have? started last fall. I'd take a shower and my vision would noticeably worsen. That's one of the things that told me that I had a serious problem after the neuros last fall told me that there was nothing wrong with me. (proved them wrong at christmas when I got pushy during a flare and got a spinal MRI that proved there was something going on)

I havent really noticed the Uhthoff's bothering me too much now tho, but it does still happen. I have noticed that L'hermitte's sign likes to act up after a shower tho...but again it doesnt do that all the time. (L'hermittes is pronounced "lear meet" and a description of it would be tingling and numbness in your arms and legs when you bend your head forward at the neck. It's caused by lesions on your cervical spine)

I've been noticing a Raynaud's Phenomenon (cold extremities) like thing lately. My hands, especially my right hand, will get so cold that it starts to hurt. A warm-to-hot shower helps, but is not always conveinent...so I've been sticking my hand into warm (not hot) water in my bathroom sink a lot.

I've known about these weird little phenomenons since before I knew I had MS (or Lyme? still waiting to get that Western Blot) I was taking medical terminology classes for a few years in preparation to get a certificate for being a medical transcriptionist. Still havent gotten it, I only take a couple of classes at a time because I cant handle more than two classes at a time. Probably why I had such a hard time in grade school and high school. Makes me wonder if that tick bite I had when I was 9 or 10 could have been a lyme carrying tick. I was a good student until I was about 13 or 14yrs old and then I started failing a lot. Maybe I've been brain fogged by that first little tick??

Taking two or less classes at a time actually helped my grade point average at the community college. I made the Dean's list a few years ago, and had a 4.0 for the first time in my life. I need to sign up for classes again so that I can get that transcriptionist certificate so I can start working at a real job again.

My appointment at the MS Clinic got rescheduled again (5th time!) But at least they only changed it to earlier in the day and not to another day. I go there wednesday. It was either change it from 11am that day to 830am or wait till November! There must be a lot of MSers where I live if they're so busy and backed up.

I hope they dont look at me like I've grown 5 more heads and 3000 new eyes when I ask them about the possibility of Lyme. I dont want to get yelled at like my regular doctor's nurse did to me a week or two ago. My regular doctor hasnt yelled at me yet, so I'll still go see him, I just wont tell his nurses anything anymore.

[blimeyitslymie]

Saw my LLMD Friday (last time before I move :( ) and she said that the itching may be due to toxins being released through skin (I have tested positive in the past with Heavy Metals), or may be my gall bladder (??) which has been hyperdynamic ... I've been bile dumping apparently.

Anyway, she said that there has been a dearth of LLMD's in MA and is recommending that until I find a new one, I should try to find a doc who practices integrative medicine, to support immune function and return my adrenals to normal (just found out that I have "adrenal fatigue" bordering on the serious end). She thinks that one of the reasons I am struggling so much with ABX therapy is that it's just too toxic for my system and recommends strengthening my immunity. She thinks I should have an immunologist examine me to see if I would benefit from IVIG (Intravenous Immuno Globulin). Anyone ever have a similar recommendation?

B ~