Nancy
 

We are here in Charlotte as you see. I'm not familiar with Oxford NC. Where is it relation to Charlotte? Do you know?

Is your doc a lyme-literate doc? Is there such a thing in Oxford or do you come over our way to see Dr. J. As you probably already know we can't use docs names on the board.

I understand your concern. We think my daughter has lyme and there have been many sleepless nights, wondering how she is doing in her sleep. When she could get to sleep! I have awakened and prayed over her at night with tears running down my face.

She has showed some pretty scary symptoms. One day she had dizziness, minutes later chest pain, minutes later her left arm was hurting (she said it felt as though someone was squeezing it off and on tightly until it hurt).

That was a scary day. We went in to see her regular doc the next day. I tried to convince him of her having lyme.

When all else failed I pulled him aside and crying I said "Look we have been to eight docs since the fall, if you let me walk out of here today without checking her heart and she has a heart problem later, it is on all eight of your heads!"

He sent us for an EKG that day. Which was normal. I am not sure what happened that day she had symptoms, but my point is, when it is your life on the line, go out on a limb (no pun intended) and tell the doc what you think.

Do this even though you risk being thought a nut! Do you have an advocate to take with you to appointments? This was something I learned from reading "Coping with Lyme Disease".

Somehow it comes across different when there is a loved one there to say "Look, do something, we can't live like this anymore!"

That can be a friend or family member. Preferrably one who understands your plight and helps you plead your case.

My sister went with us to my daughter's appt. She is a nurse and first had to wrap her brain around this weird disease that has strange non-text book science surrounding it.

Unfortunately, she fell apart and wept in front of my daughter and the doc twice, but he did do some testing. He didn't do the right kind and he still isn't convinced of the abilities of this crazy illness, but he did listen better.

Anyway, I hope something I said helps. Try not to let this mean disease get the better of you! I know that is easy for those of us that don't have it, but I have to tell my daughter that often, too. Take care and chin up!
 

if your insurance denies it and you can't make the payments try bicllin LA intramuscular shots 1.2units 2-3 times a week.

this should start to calm down the spirochete activity, but you will have a major herx.

see a neurologist about the stabbing neuropathies and see if you are eliglbe for IV gammaglobulin (IVIG). an immunologist would be to see concommitantly for the IVIG.
 

You're gonna be fine. Just hang with us!

------------------
oops!
Lymetutu
 

You will not die, but if you don't start abx like right NOW!; you will start to wish you were dead. It gets that bad.

Get to an LLMD AS SOON AS YOU CAN.

lymster
 

I know, you feel like Job, except your piqued by a million internal things. Job got hit from the outside. We get hit from the inside.
Real scary sh*t--- heart, brain, nerves----everything.
Exact same happened here and for year(s).
For 18 months straight,I expected to die that day, didn't know where,but convinced I was.

get abx as soon as possilbe.

good luck.

excellent suggestions here.

ps: No. Your not goin' nuts.
 

Propranolol blocks catacholamines like adrenalin from over stimulating the heart and has an anesthetic affect and decreases heart rate and ahrrythmias. It can ease anxiety and stop tachycardias.

Propranolol also lessens mortality rate from heart attacks. The generic is cheap.

Your docotor won't pursue this unless you bring it up. It is an old drug often overlooked now. The contraindication include severe asthma, congestive heart and excessively slow heart rate or hypotension.

Might be something to try, as I know first hand how unerving heart stuff can be including atrial fibbrillation.

TG
 

For a while it seemed like my symptoms were tolerable but now I'm starting to get more worried.

I can tell my brain & heart are being effected. I have weired headaches & serious brain fog & confusion.

My heart beats irregular & sometimes it starts to beat very rapidly even when I'm sitting still. The stabbing & shooting pains are now not only in my arms 7 legs but in my brain & every inch of my body.

I will see my MD next mo.after not seeing her for more than a yr. I dont know what to do. I'm just so worried & depressed. I just need a shoulder to cry on. [QUOTE]

Terry, I used the quoted area, last box, and broke up your long continuous paragraph. Please have shorter paragraphs of 6-8 lines in future to help us late-stage lymies...thanks!

I also removed the BOLD [/B] at the beginning of the text and the end so it's easier on our lyme sensitive eyes.

Getting the correct treatment NOW will help you remain here on earth for many years. Call & get to your LLMD, lyme literate MD, NOW.

If they aren't, look for a support support, left column, for your state and contact them by email or phone call.

Heart/chest pains need to be looked at especially if the pain is radiating down your arms. I have had many of the symptoms you were discussing.

I'm NOT a medical person; just misdx for 34 years! Best wishes.

bettyg
 

I live in Durham, just down the road from you and what is funny is 2 docs told me we don't have lyme here ! ha I have had almost exactly the symptoms you have described. I am also going to Dr. J. If you would like to talk to me, let me know and I'll send you my email address. Too bad we have to prove the CDC wrong about N.C. and the presence of Lyme.

If you want to receive an effective help besided compassion, I suggest that you describe in details all the inefective treatments you have received so far or problems with side effects.

 

For a symptom list I suggest the Canadian Lyme site- www.canlyme.com go to symptoms and see if you have 20 or more-print and take to doctor.

For tx guidelines go to www.ilads.com
Print and take to doctor, highlight and point out antibiotic guidelines.

I think you should get an earlier appt with dr if possible, maybe try another dr

Make an appt with an LLMD ASAP

The only half way decent test is the Lyme Western Blot-but do get a copy of your result and post it here.

You have come to a good place-we'll help.

Janet

Yes, you are going to die. No way around that one, kiddo.

Get to an MD soon. My heart was troubled by Lyme. I had many problems and a few cardiac episodes where my heart would beat eratically or skip a beat, race, cause chest pain and down my arm. I ended up in the ER a few times for this. A very good Cardiologist kept tabs on me for my first 2 years of treatment. I was monitored weekly. Yesterday, I got a "your heart sounds perfect" from my MD. It is a big relief. I know that abx helped to get my heart back to a normal state.

bc

 

I'm not an MD, and I basically know nothing about you. But from I've heard hear on LymeNet, those heart related symptoms do sound like it could be Babesia.

Make sure you see an LLMD for this and make sure you treat for coinfections first.

Actually, you should make sure you check out the toxicity level and hormonal imbalances in your body prior to any of this and address any such concerns first.

Take proper supplements (e.g., according to Dr.B's guidelines from ilads.org).

Here's a link that you may find useful.
http://flash.lymenet.org/ubb/Forum1/HTML/034069.html

It discusses the significance of abx.

I'm not an MD.

Michael