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kelly1234
Regular Member


Date Joined Dec 2008
Total Posts : 51
   Posted 10/13/2009 9:03 PM (GMT -6)   
I haven't posted in a while, but am wondering if any of you share some of my symptoms. One of my persistent symptoms is vibrating/tingling around my mouth and down my legs along with many other symptoms. Anyways, what is currently making me crazy is the tingling in my mouth area. I feel like something is eating away at me. I have also a strange feeling around my abdomen, a slight burning and numb feeling. I feel like I've got a live wire running through my trunk area. Also, I've noticed in the last few days, that my speech is somewhat affected.

I should mention I've been treated with antibiotics for over a year and have had crazy anxiety from day 1.

As my symptoms are neurological, an ongoing worry is the ms/als overlap. I've been told that I don't have these and it is the lyme.

skagey guy
New Member


Date Joined Sep 2009
Total Posts : 14
   Posted 10/13/2009 9:57 PM (GMT -6)   
From every neurological symptom you mentioned it sounds like Lyme to me.I had extreamly bad stutter
the first year or so that I was on I.V antibiotics for Lyme. I used to wonder in the early stages of treatment
if if I had MS but my doctor said that it was the Lyme. I was on I.V antibiotics for over a year and my symptoms started to improve. I have been diagnosed with Lyme since November of 2005. My speech is so
much better then it was when I was first diagnosed with Lyme.

PSR1
Regular Member


Date Joined Sep 2009
Total Posts : 67
   Posted 10/14/2009 5:17 AM (GMT -6)   
So skagey guy: did it take a year of IV treatment before you started to improve? I have been on meds for 3 months and still feel all kinds of neurological impairment: so weak and shakey I often cannot function. How long before it begins to turn around?

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35853
   Posted 10/14/2009 12:20 PM (GMT -6)   
I believe that detoxing will improve most sx we deal with, abx kill the bacteria or whatever, but the body still has to rid itself of the 'leftovers'!

Quite a few LLMD's speak of the need to detox now. And there are a lot of options for detoxing.
It's been said:LD patients can be as ill as people w/ congest. heart failure & in as much pain as post-op patients.


skagey guy
New Member


Date Joined Sep 2009
Total Posts : 14
   Posted 10/14/2009 2:37 PM (GMT -6)   
PSR1 it took me about a year to notice that I was improving. Others noticed cognitive improvements before I did. I strongly believe the earlier you get diagnosed by an LLMD the quicker you recover. In my
case I wasn't diagnosed for 17 years after a tick bit me in the head when I was 3. But I have made a lot of progress since I started treatment about 4 years ago.

kelly1234
Regular Member


Date Joined Dec 2008
Total Posts : 51
   Posted 10/14/2009 3:32 PM (GMT -6)   
I have been taking epsom salt baths, infrared saunas and ionic foot baths for detox. Perhaps I am overdoing it on the detox. The last day or so I feel like I have aliens in my body, horrific anxiety, and cognitive impairment (panicked when I couldn't find my car in a lot yesterday) and speech difficulties (slurring words) I've got this vibrating tingling in my mouth and legs. I feel like something is eating away at me. I've been under treatment for 14 months.

+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 10/14/2009 5:14 PM (GMT -6)   
Kelly1234, I am so sorry that you are experiencing so many of these things so long into treatment! It is not fair! I am also very discouraged about it, as I'm sure you are too!

My abdomen problems are a new bunch of belly flab, bloating , constant gas and pain where I THINK my speen is. But I experience what may be similar to your other parts of the body. It comes and goes, but often my entire mouth aches and throbs. I believe I am losing gum tissue.

And feelings of a buzzing (not the right word, but can't think of one) all over my body. I don't know that it's really 'tingling', but if the feeling could make a sound, it would sound like the August cicadas, w/ a throb or pulse to it! Often, my whole body throbs and buzzes. As some on here say, it's like creeping, buzzing bugs just below my skin.
 
Yes, Kelly, it feels like aliens in my body! 

Agreed, Kelly -- it feels like something eating away at us -- if it would just EAT THIS BELLY FLAB!! Before the tickbite, my belly was near flat -- not work out flat, but it was just fine. I quit drinking for 2 years (cause I couldn't stand it) and figured I lose a little more weight. But NOOOOOOO, my belly just gets bigger and bigger. Go figure THAT.

My feet still hurt very bad upon arising, but that quickly passes. but the pain on the bottom of my feet builds all day and I frequently limp to my car. Keep in mind that I waited tables for almost 20 yrs and my feet NEVER hurt.

maybe this is not the appropriate post, but I am beginning to seriously wonder about the heavy duty, long term abx. WHY would it take so long for strong abx to give us improvement? Are there any OTHER diseases like that? What about syphillis? I dont' think I've heard of YEARS of abx for syphillis. Is this because it's usually caught sooner?

Regardless, I really don't want to be on years of abx. I know that is not good. I might consider some pulsing, but I'm not sure that my innards are healthy enough to withstand years of abx. Kelly's and others stories really concern me.

I know this is what the LLMDs believe is the proper avenue, but on here, it often seems so hopeless and a failure.
 
PS: Several times I have started the apple cidar vinegar 'detox'.  It seems to make my stomach feel worse.  Ideas?


Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.
What don't these nasty bugs cause? 
CD57= 60, so we're in pretty good shape.
 

Post Edited (+Lyme) : 10/14/2009 5:17:22 PM (GMT-6)


Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35853
   Posted 10/14/2009 5:53 PM (GMT -6)   
Hi +Lyme!
Not all LLMD's believe that abx are the way to heal someone w/Lyme & co's!! I am still reading the book; "Insights into Lyme

Disease Treatments; 13 Lyme Literate health Care Practitioners Share Their Healing Strategies." - and in there are several docs that only believe abx should not be used

other than short-term, urgent situations, or when a patient is has ended up in a situation where progress has slowed too much or has been stopped.

There are Natural docs, homeopathic docs, integrated medicine docs and others that believe this as well.

If you are interested in looking at some alternative tx's, why not check out Dr. J??
There is already a thread going where we are

discussing his protocol. Why don't you do a little reading there? The are some really great links being posted there as well.

Whatever you decide to do, I wish you peace along the this journey as you search for healing.
~Trav
It's been said:LD patients can be as ill as people w/ congest. heart failure & in as much pain as post-op patients.


+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 10/14/2009 6:36 PM (GMT -6)   
Thank you, Trav. I think I will do that! And I may check into your book soon -- soon as I can float the $$. Seems there was a discount on Amazon. And also -- I made an appt today w/ a regular MD, who, according to the Lyme Association of Greater KC, has knowledge of Lyme, altho not a specialist. I am VERY anxious for this appt (next Friday), as I have regular health stuff (all that lady crap) thta needs to be checked on.

The receptionist did not balk at the word 'Lyme'. I had requested a female Doc on their list who is full up. She said she thinks all of their Docs are pretty good on Lyme. So there's a bit of hope there, too!

Kelly1234, please keep it up and keep us posted! Maybe you need to try a different treatment? what does your Doc say about continued symptoms?
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.
What don't these nasty bugs cause? 
CD57= 60, so we're in pretty good shape.
 


Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35853
   Posted 10/15/2009 1:39 PM (GMT -6)   
Hi +Lyme!
I hope you have great success with a new doc!! At least you'll know that they have a least a little knowledge about lyme!!!

I know for me that book gave me a little better understanding of some of the protocols being used today for Lyme. Since there are 15 different opinions on Lyme tx - laid out side by side - it made it a lot easier to chose which direction I wanted to go with my tx.

I hope you find not only healing, but peace...
~Trav
It's been said:LD patients can be as ill as people w/ congest. heart failure & in as much pain as post-op patients.

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