a new symptom

Question

my hands started to feel numb or what we use to say,went to sleep, on and off for a couple of  weeks now. i have to shake my hands in the air to try to get rid of the numbness and tingling. has anyone had this kind of symptom? Any advice? I see a LLMD in 3 weeks and can't wait to start a cure and find out what co-infection i have.

ewford · Accepted Answer

All the time. Limbs "fall asleep" faster , so to speak. Have your doc test you for Mycoplasmas and HHV6, HHV7 and Epstein-Barr as well as Bartonella, babesia, Rickessetia. Lyme is like an onion, many layers to be peeled.

JackieCalifornia · Answer

Have you already made the appointment with the new doc where you are moving to?  If not, think about doing that .... it might get you in sooner.

You hang in there -- you're strong to have gotten this far and hung on this long -- "keep on keeping on", as a dear one used to tell me.

mojogal · Answer

I pray every day for myself and others. I receive daily inspirational bible versus by email, I light devotional candles and the list can go on. I feel blessed that I have a nurse friend who has been fighting the illness too for at least 4 years on daily IV medications. She wanted me to get  tested 6 years ago, but I had no insurance or money for the tests. I had to go on disability. I really wish I was tested then because I might not be in this terrible situation now She has helped me out with everything related to the illness..The other miracle for me was that my PCP doctor never believed in the disease and so I wasn't being treated and I was suppose to move to another state Monday, and then see a LLMD there. That got postponed due to my fiancee's work and now he can't come to get me until the end of this month..  I got really sick and called my PCP's office for an appointment, when she walked into the room, I started with, "I know you don't believe in Chronic Lyme" and all of a sudden she said stop, I do believe in it. I have done research and her cousin has it so,now she is going to start sending my blood to one of those labs that look for the co-infections. I have to believe prayer led her to that. It was so unreal to me.
Prayer is important as well as research, support groups and the LLMD's.

wonko · Answer

I'm late to this thread, and won't comment on the issues of sharing what has worked and what has not, but I would like to contribute to the post.

Tingling in my face/hands/feet is what finally bothered me enough that I actually went to a to see a doctor years ago when my problems began to surface.  Like others post above, the tingling would happen on its own or even very light pressure could trigger/enhance it, sort of like when body parts "fall asleep."  Of course, having the sensation in my face was very new and like nothing I'd experienced before.

After awhile the tingling became constant, so while it would get worse or slightly better, it was always "there."  It moved up my arms/legs and spread from my face into most of my head above the neck.  And it stayed.  For over a year.  

It took a long time before my body/mind was able to tolerate this symptom without constantly being concerned.  After all, signals like that are what the body uses to tell us there is a problem.  So while the tingling started before I had fatigue or many of my other symptoms, all by itself it was hugely distracting and upsetting.

I recall when it got "bad" that I couldn't tolerate carrying/holding anything but very light items for any period of time, because the pressure would aggravate the problem and my arms would go from tingling to buzzing.  The sensations were crazy.  Sometimes while walking each step would bring on a surge in tingling/buzzing.  And the feelings in my face and head were just terrible, it actually felt like my brain itself was tingling or buzzing.

I'm glad to say that now-a-days I'm largely free of this symptom.  It still happens, but it is greatly improved.  

What worked for me was treatment and time.  I think that once Lyme and co get into the nervous system, it is a slow process to both kill enough bacteria and heal enough for these symptoms to improve.  So regardless of your course of treatment, there may be a slow turnaround with this one, or such as been my situation.

nutrinut_bob · Answer

I apologize for my answer above.  You see, there are a couple reasons why I can't tell folks what worked for me.  The biggest reason is the way I found what worked for me.  I found the stuff after a long course of fasting and prayer, and it is my belief that if people are intended to find it, they will.  Next reason, if I were to tell, the price of what I need would skyrocket, don't need that, I'm unemployed and already spending a large percentage of my income, to be rid of these vermin.  Should only well monied people have it?

Although my answer above made me sound very uncaring, the truth is, I'm not.  You all have no idea how many hours I have spent crying for the world, but knowing in my heart the Good Book says, you can save nobody but yourself.  Not even Noah, Daniel, or Job could.

So, all I can do is encourage people to research things themselves.  I can tell you that what I found, I found online.  And everyone needs to look out for themselves.  You need to poke and pry into things, dig, dig, dig.  Don't depend on any person to help you, some of the treatments I've read online are outright quakery.

I have to admit my education gives me a bit of an edge on Joe or Joesephine Average and I see things that others often would skip right over.  Not to mention the fact that I have an understanding of nutritional factors that play a role in why we are susceptible to these vermin, but something like a wild turkey isn't.  Their complement systems can handle the Lyme spirochete, why can't ours?

Here's a little example of the type of things you're looking for, it isn't a link, but rather a title, a place where you might begin to see a few things that could come in handy to know.  "Synergistic Antibacterial Effects of Polyphenolic Compounds from Olive Mill Wastewater".  You're on your own thereafter.  I know such reading can be drag, if you don't have an interest.

To be honest with you, I don't have a definitive answer to just what I managed to kill, all I can surmise is that it was something I had been packing a long time.  I do know my legs nearly burst when it all fell down into them, or sure felt like they were about to.

Good luck in your research, don't leave God out of the equation!

nutrinut_bob · Answer

No, not at all like the doctors, I'm not making money off people who blindly follow my not so well informed advice.  What works for me may not work for you, genetic differences between us, and perhaps in what we are infected with too.  I can't even help my own children, why should I care about the rest of the world.  However, if you really wish to know, take out the underline in my name,  he's at yahoo.

mojogal · Answer

I agree with Brandi, we are here to share information that may help and discuss with our doctors.

brandycolwell · Answer

wow, you have help that you wont share? well arent you just like the dr that you complain about.

nutrinut_bob · Answer

I will not post it in public, or on this site's msg system, and we're discouraged from trying to contact each other by other means.  I'm sorry, let the so called physicians find their own way.

mojogal · Answer

Thanks for all the answers and discussion, I too would like to know the herb/supplement you are using.

brandycolwell · Answer

can you pass on what the herb is?

nutrinut_bob · Answer

I've not been tested for anything, unemployed with no money to pass out for misdiagnoses.  But, I'm fairly certain I was infected with avian mycoplasmas from a typhoid vaccine in 1968.  I'd also had ticks on me prior to that.  The thing that somewhat verifies the mycoplasma infection is that I started taking herbs that were noted as being effective against them and after two months of treatment, experienced a massive die off of the little vermin.  It's now been 8 months of treating them, and what I suspect to be the Lyme spirochete.  They're not all dead yet, but I'm still working on them.

brandycolwell · Answer

did you ever find out what was wrong?

nutrinut_bob · Answer

Such questions bring back memories for me.  I remember about the 7th grade after mom woke me up to go to school, I'd have to wait awhile before I could do anything.  My hands and arms were still asleep.  After a short time the circulation would get going again and so did I, off to school.  Recently I've been experiencing numbness on the tops of my feet.  That also triggered a 7th grade memory of that area being painful.  So much so that I came up with creative ways to lace my Converse All-Stars, trying to make as few crossings as possible to ease the pain.  In thinking back, I sometimes wonder how I kept going all these years.  Truly, I had no idea there was something wrong with me, and had I consulted any physician I'd have been told I was "normal".

JackieCalifornia · Answer

Your doc will have ideas of what to test you for based on your symptoms and history.  There are so many possible tests for so many possible co-infections that testing for everything is pretty much overkill in all likelihood.   It's a medical decision.  The trick is finding a good doc.