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

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Jendays247
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Date Joined Jul 2006
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   Posted 6/1/2009 8:37 PM (GMT -7)   
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...
http://www.myspace.com/399827188


Razzle
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Date Joined Aug 2007
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   Posted 6/1/2009 11:24 PM (GMT -7)   
Yes, I had one episode of this Proprioceptive Dysfunction that lasted about 24 hours a few years ago. It caused me to be unable to walk without help, because I felt like it was someone else's legs that I was trying to walk with & not my own legs. Really strange symptom!
-Razzle
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Pancytopenia, chronic malabsorption/malnutrition, etc.; G-Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, Heparin (to flush PICC line), Claritin, Colloidal Silver (used topically), IV Milk Thistle, probiotics.


gorbybelle
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Date Joined May 2009
Total Posts : 147
   Posted 6/2/2009 1:51 AM (GMT -7)   
I have not had this myself - but have read about it - whilst researching lyme.

ticker
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Date Joined Feb 2003
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   Posted 6/2/2009 5:54 AM (GMT -7)   

Hi Jendays247.  I am sorry you have this symptom.  I have not had this.

I have had Babesiosis though, and your other symptoms sound like it.  You were tested three years ago which is a long time.   Are you currently being treated?  I highly recommend seeing a doctor who tests and treats for co-infections.  A knowledgeable doctor will be able to properly evaluate you whether you test positive or not.   Many doctors believe the co-infections need to be treated first for Lyme treatment to be effective.  I agree with this.


Jendays247
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Date Joined Jul 2006
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   Posted 6/2/2009 9:24 AM (GMT -7)   
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.
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Jendays247
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Date Joined Jul 2006
Total Posts : 652
   Posted 6/2/2009 9:26 AM (GMT -7)   
Also,

Some things makes me think Lyme and not MS (heart issues). It's really strange...sometimes I'm like - oh this symptom says I FOR SURE have ______, and other times it's the other way around.
http://www.myspace.com/399827188


Dowa
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Date Joined Sep 2008
Total Posts : 1120
   Posted 6/2/2009 10:35 AM (GMT -7)   
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)


Jendays247
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Date Joined Jul 2006
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   Posted 6/2/2009 11:09 AM (GMT -7)   
Dowa,

Do you have Lyme for sure? WB Results?

I have nothing definite on MRI either - just signs of either prior infection, ischemia. They are lesions but no neuro said they were MS-like.

I have no sx of Parkinsons.
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Dowa
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Date Joined Sep 2008
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   Posted 6/2/2009 11:55 AM (GMT -7)   
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

Jendays247
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Date Joined Jul 2006
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   Posted 6/2/2009 12:21 PM (GMT -7)   
did you have ANY positive bands with Igenex?
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Dowa
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Date Joined Sep 2008
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   Posted 6/2/2009 1:00 PM (GMT -7)   
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)


Jendays247
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Date Joined Jul 2006
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   Posted 6/2/2009 1:26 PM (GMT -7)   

Dowa
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Date Joined Sep 2008
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   Posted 6/2/2009 2:18 PM (GMT -7)   
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

Jendays247
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Date Joined Jul 2006
Total Posts : 652
   Posted 6/2/2009 2:20 PM (GMT -7)   
I asked because I'm in Michigan where Lyme is really getting its exposure right now...newspapers, local news, etc...but prior to a couple of months ago it wasn't really talked about.

Do you have an LLMD that wants to treat you?
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Dowa
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Date Joined Sep 2008
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   Posted 6/2/2009 2:27 PM (GMT -7)   
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 

Jendays247
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Date Joined Jul 2006
Total Posts : 652
   Posted 6/2/2009 3:48 PM (GMT -7)   
So are you on the lyme boards in hopes that someday you'll get treatment? Surely there must be a doctor not more than a few hours from you... (?)
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Dowa
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Date Joined Sep 2008
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   Posted 6/2/2009 3:58 PM (GMT -7)   
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

RottenDog
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Date Joined Apr 2009
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   Posted 6/2/2009 10:15 PM (GMT -7)   
i have read over and over of the flipping doctors who state there is no Lyme here. thats bull as we are the liven proof of it. no we may not of been bit in so called state, but if we happen to live there at time is getting sick well that means its there face it and treat it i say. if you dont understand it go back to school and dont bill us for it. lord i get so mad reading who we are made to suffer due to doctors ingnorince.
   RD
                                                                                                                 
 
still looking for answers
 


CajunGrl
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Date Joined Mar 2009
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   Posted 6/2/2009 11:14 PM (GMT -7)   
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.
2003 symptoms started
2007 Diagnosed with Lyme. Didn't start treatment.
2008 symptoms came back with a vengence.
2009 Diagnosed with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Biaxin 250mg to start,Mepron,Ultram,Thyro Complex 60mg,Probiotics and supplements


RottenDog
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Date Joined Apr 2009
Total Posts : 1013
   Posted 6/3/2009 12:07 AM (GMT -7)   
i could drive to Az. its closer to me the La. is, but either one isnt a apption for me. some how some why i have to make a Dr. here treat me. i am still waiting for my money tree to blum hehe then i can traivel to see a LLMD
   RD
                                                                                                                 
 
still looking for answers
 


minerals
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Date Joined Jul 2007
Total Posts : 943
   Posted 6/3/2009 9:17 AM (GMT -7)   
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
DX. LYME  7 /03 -I believe I 've had it since 1985- 
oral doxi, amoxi 6 months. Have been bitten 2x since                  
Developed many chemical & food sensitivities& Allergies to many Suppliments
Swollen Burning tongue/lips
Hashimotos Thyroiditis
DX. Babsiosis 4/07 -Malerone 2 wks, Mepron & Azithromax 6 mos. 
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began Rifampin and Minocycline 9/08
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Turquoise Sky
Regular Member


Date Joined Apr 2009
Total Posts : 250
   Posted 6/3/2009 9:47 AM (GMT -7)   
I didn't get the sweating, but did have a week or two similar to what you are describing. It started with extreme vertigo, and as that was becoming less, I still felt very odd. It felt to me like my brain was here and my body was here, but there was a slight gap between them. Don't know how to decribe it other than that. It did go away as other symptoms were taking its place.

Hope you find relief soon!
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