By far my strangest symptom that I've never heard anyone speak of...

Okay, maybe no one will even understand what I'm saying, but I'm giving it a shot:

My weirdest symptom (not worst, just weirdest) is the sensation (or rather lack of sensation) that my arms and legs are not there. It is not a numbness. I can feel them perfectly fine. It actually feels like I have no legs or arms unless something is touching them. For example, right now I am wearing a tank top and my arms are exposed, and it just feels like I have hands because my hands are touching the keyboard. When I'm laying down, I have to have something heavy like a blanket or something on my legs or I feel like they're just not there. Wearing shorts is the worst because all I can feel is the pressure of my feet against the floor. It literally feels like I have no legs. I'm constantly tensing the muscles in my arms and legs to make sure I still have muscle function.

I'm worried everyone will think I'm crazy with this symptom, but I really wonder if anyone else has it!

The actual term for this is Proprioceptive Dysfunction, but I've only ever heard of it discussed between people with MS.

Also, does anyone have problems with sweating profusely and getting hot flashes? I have almost every symptom of Babesia but tested negative for it back in 2006. I'm so dizzy, short of breath often, sweating (not at night but during the day out of nowhere I'll get clammy and sweaty and my heart races - I have to go get ice packs and put them on my forehead or stomach or back of my neck).

I'll be anxiously awaiting responses...

I have not had this myself - but have read about it - whilst researching lyme.

I have this symptom almost 24/7. The fact that no one else is this bothered by it really makes me think I have MS and not Lyme which scares the crap out of me.

Ticker - I do have an LLMD and was being treated a few years ago but gave up hope after only one month. My test results were not very convincing (39 IND, 41 +++, 58 + on IGG and 30 +, 39 IND, 41 IND on IGM).

I really feel almost completely effected by neurological things. I have muscle weakness in almost every part of my body; it's like I only have so much energy to use and then the muscles give out. I can barely walk because my balance is so bad. At times I get burning muscles but it is not common.

I wish I knew I had something that was capable of getting better. I know this is not the case in MS. I'm really not sure what to do at all. I have to see my LLMD in a week, but at this point I feel that retesting would be futile. I think if I do decide that retesting is worth the money, I'll wait until a few months of treatment first to see if my body has built up more of a response.

Its funny to see this post today as I am experiencing this symptom again after a couple of years. I believe it is from being neuro-toxic and you can have neurotoxicity from a number of things including Lyme and MS. Mine started with a severe black mold exposure. When I detoxed those symptoms vanished but they are back now that I am not doing sauna etc. If I am sitting with my legs crossed for example, I wont know it until I look down and SEE that they are crossed. Its a very strange feeling, like being detached from our body. Take care, you are not alone. I also had a possible MS diagnosis but nothing definate on MRI. This symptom is also very common in Parkinsons Disease.   D

Post Edited (Dowa) : 6/2/2009 11:38:43 AM (GMT-6)

This is the million dollar question. (: I have been asking for four years. Bowen and Fry say yes, WB and Igenex say No. So...who knows. I have almost every symptom but my neuro symptoms have been there for many years. I have had three MRIs done and they are clear, a head cat scan showed small patches of plaque, and my spect scan was the worst. Showed severe neuro-toxicity but the cause is the difficult part. Have you ever had a spectscan done? It explains the neuro symptoms at least, just does not tell you what caused it.  D

Yes 30 and 41 are positive on IGM. But doc here does not consider that a positive for Lyme. From what I understand from everyone here, 41 can be bacteria from a number of things, or even Epstein Barr. Did you have any positives show up? Ever have a spect scan of the brain?  D

Sorry, I just read your results. Interesting, we both have the same two positive bands. Hm....

Post Edited (Dowa) : 6/2/2009 2:03:05 PM (GMT-6)

My home is in New Hampshire but I am in Dallas, Texas for treatment for mold exposure. Docs here say "there is no LD in Texas." We know that is simply not so. Why so you ask?  D

There are no LLMDs here as they say there is no Lyme here. Glad to hear that Michigan is waking up. That is good for you.  D 

I am told that people here with Lyme travel to Louisiana for treatment, dont have transportation. I know of many on the East Coast when I get back there.  D

Yep, most people in Texas travel to Louisiana. There is only one doctor here. That's who I see. My LLMD gets angry when he hears that others doctors say there is no Lyme here. He had Lyme disease himself. He says call the CDC and see how many cases they have here. He's seen a few people from Florida too.

Sweats day and night have been a symptom for me on and off for a few years. They got worse while treating bart since October 08. Now that I have stopped treating bart they are going away. They were unbarable coming every 15 mins. around the clock. for many many mionths. The LLMD thought they were a herx, I think it was due to Rifampin--but not sure. Anyway they are much better. Now treating babs again with malerone to try to get at other strains that the 2 years of mepron didn;'t get.

Sure sounds like you have lyme and co-infections to me. One month of treatment would not help much if that's what you had. I hope you get help soon as it must be surely in your brain. 3 years ago I was dragging my left side for a few years, now that is better.blessings