Please Help Me - Desperate

[neurogurl]

Hi Everyone!!  First let me just say that I am at the point where I feel like if I don't get help now I will completely lose it.  I am in a state of panic and have completely lost trust in all doctors.  I KNOW there is something wrong with my health.  It's one of those things where you just know your body and its telling you PLEASE HELP ME!  I so badly need to speak to someone (preferably over the phone) or via a chat system who has Lymes disease to compare ...... I understand that Lymes affects people differently but at least to get an idea of the commonly seen symptoms.  I read what they are but I want to speak to a LIVE person to match the history ..... the step by step occurrences.  I truly truly feel I have Lymes and its going untreated...and it breaks my heart bc all this time Im sitting around not receiving treatment, its slowly killing me.  If I cannot find someone willing to talk (ps I would be happy to give my cell number via email) then please can anyone post for me under this thread your experience with Lyme.  Kind of like a diary of what happened to you, your story.  Any help is greatly appreciated, I am so upset over this.  I don't have the energy to type my story/symptoms but would love to talk to someone

[neurogurl]

hi carrie can u tell me what your numbness is like.....for example, if you were to take a pen and draw on the numb spots is it completely numb to the point where u cant feel the drawing?

[carrie235]

January 2010, had to have gallbladder removed.

About 2-5 weeks later, SUDDEN onset of the following pretty much all at once:
-  Trembling
-  Tightness feeling in my middle section (only for a week)
-  Numbness in face under left eye/cheek area
-  Vibrating/Buzzing in mostly left leg
-  Numbness in arch of left foot
-  Numbness on top of left big toe
-  MAJOR onset of anxiety (but who wouldn't with all these symptoms)
-  Buzzing in scalp off and on


Oh gosh....I believe there are way more things, but right at the moment, I cannot remember them all.  I didn't really have a joint pain to start.  Periodically, my fingers and toes will hurt me, but it's when I am herxing from my Rife machine usuage to treat my lyme.

My doctors believe that having my gallbladder removed caused a lot of stress to my body making my immune system unable to keep the lyme disease in-check.  I starting ABX in January 2011 and am doing MUCH MUCH better!  Still have a long way to go, but wow...it's so good to have a semi-normal life again!!!  

If I can remember more, I'll post again.

[ree427]

Hello -
Low grade fever for me is just a low fever around 99 degrees. The joint pains are mostly in my fingers and knees and it feels like an ache. It hurts more when I am active. The muscle pain  is like an ache all over my body and stiffness.

[Ness78]

Hi there,
Unfortunatley, you will be hard pressed to find two lyme stories that are the same.  It is a bacteria that has access to virtually your entire body.  People have neuro symptoms, joint symptoms, heart problems...the list goes on.  Have you read about the Western Blot by IGENEX for testing.  You can google their site.  

Canlyme(dot)org is a great site to for a full list of possible symptoms.

You are also best to find a doc't that specializes in lyme disease in your area.  If you go to lymenet(dot)org, sign up, go to flash discussion...they have a forum on finding lyme specialists (llmd) in your area.

My symptoms are mostly neuro (numbness, weakness, burning, hyper-reflexes, twitching, muscle jerking, wobbly legs), it was thought to be MS for the first 6 months because of my age (32), the nature of the symptoms (neuro) and three lesions on my brain (also not cool at 32 years old). Two MS doc't ruled it out for the most part, CNS lupus has also been ruled out.  

If you have the energy, it is great to share your back story on here.  

All the best...

[neurogurl]

Hi Ree!  Thank you so much for sharing your story.  If I may ask some questions?  

low grade fever -- what does this mean?  

also, when you say you have joint pains/muscle pains can u please tell me, what are the joint pains like for you?

Thank you again i appreciate your willingness to help me!!

[ree427]

Just a note regarding Burrascano's article - make sure you look at the sixteenth edition.

[ree427]

Sorry you are going through so much right now. I would be happy to share my story from what I can remember.
My symptoms began in July 2007 with a flu-like illness followed by a stiff neck. My symptoms progressed into muscle twitches in my legs about 6 months later. About one year later I developed muscle pain and joint pain with some nausea, stomach pain, sore throats, low grade fevers, panic attacks, fatigue, swollen glands, menstrual irregularity, constipation, heart palpitations, air hunger, and insomnia. I cannot remember an exact timeline of my symptoms, but I do recall my symptoms flaring up every 4 weeks.  
I was misdiagnosed with Fibromyalgia for the first year of my illness and eventually I was losing weight and becoming so ill I could no longer work or function from day to day. A friend told me to look into Lyme Disease so I did. I had negative tests, so I continued to spiral downhill not knowing what was wrong with me. I later discovered the tests are far from accurate and had additional tests done by a person who specializes in Lyme. These tests were positive for three co-infections, but still no positive test for Lyme although I believe I have Lyme also.
This is all I can remember at the moment. I am still struggling with the disease and the  treatment. If you google "Burrascano Treatment Guidelines" you will come across an article which is very detailed at listing all the symptoms of Lyme. It might be helpful for you to compare your symptoms to those listed in this article.
Hope this helps.