I'm a nurse and I know there are hundreds, thousands out there that are so much worse off than myself...I've been healthy all my life and loved my career. The last 3 years symptoms have been gradually sneaking up on me but the last year has been more than I could just write off. I've been through more testing than I can care to think of...and all of it at my request as doctors are pretty scarce here in rural alaska where I moved from Florida just over a year ago. My doc, bless his soul, will order anything I ask him to, but he doesn't have a clue as to what might be wrong. Everything has been negative.MRI's, CT's, blood tests, etc. I've dealt with the pain, and all the other symptoms up to this point. I also have had left back/rib pain for a year which is much worse when I am sitting to the point that I can't even sit down long enough to eat dinner without an ice pack on my back to deaden the pain. Nothing else helps, chiropractor, accupuncture, spine injections, etc.. I also have had right front liver/rib? pain for years, muscle pain, shortness of breath, so many problems. Even foot pain (which I ended up reading could be a symptom of lyme..go figure) and ended up having surgery on my foot 3 weeks ago for plantar faciitis? after months of other treatment with no improvement and I ended up to the point I couldn't even walk at all on my right foot. Just 3 days before my surgery on my right foot my left leg gave out on me and I ended up severely twisting my left ankle and tearing ligements. I now have walking braces on both feet and am bearly able to get around on crutches. My neuro symptoms...brain fog, double vision, dsylexia symptoms, short term memory problems, trouble remembering things I have done a million times...have gotten worse over the past few months. I chalked it up to my odd shifts at work...I did day and night shifts as a house supervisor, so I stopped that. It didn't help. Then I decreased my hours...didn't help. Then after being off for four weeks with my foot (feet) problems...no stress, lots of rest, and noting that the neuro problems did not improve...I had to admit that I don't feel safe to practice as a supervisor or nurse. As a supervisor I am repsonsible for medications and mixing meds when the pharmacy is not there as well as many other important duties. Admiting that was one of the hardest things in my life, but I will NOT put someone else's life in danger. So now I am on medical leave which I can only do until November 28 at which time I will lose my insurance and have to resign unless I can find some answers. I don't have any family...parents are dead and my children are grown and in Florida and I haven't told them what is going on. No close friends...my husband is being as understanding and supportive as he can. He has not been working since we moved here, so it's been my income and insurance for us. We own a lodge/bed and breakfast on the Kasilof River here in Alaska, but that is only income for 3 months in the summer.

I'm sorry to vent..but I am just looking for friends and some support out there in cyberspace. Just wondering how you cope, what were your symptoms in the beginning, how you found out your diagnosis, etc. Feel free to PM me if you don't want to write here, but if you write here, it might offer some answers for others who wonder as well...Thanks in advance...Tamera

You really are going through the mill! I was diagnosed via Igenex after my local doctor kept telling me "you're negative," even tho I had 2 positive bands on the Western blots! I have no symptoms basically, excpet perhaps eye floaters & some difficulty focusing on reading at night.

But I have some suggestions while you wait for a diagnosis. Order Stephen Buhner's book "Healing Lyme." He is a master herbalist & his book provides a protocol of herbs that you can take with or without antibiotics. It is also a veritable gold mine on all the herbs that can be used for Lyme. He gives dosages too & lots of other information.

There is also a yahoo group based on the Buhner book at http://health.groups.yahoo.com/group/Lyme_Aid_Buhner/ Most of the people there are using his protocols. Some have been on abx, some still are.

And finally there is a good Lyme group on Planet Thrive. Google that, register & then click on Connection, then Forums & then scroll down to Lyme Treatments.

Hope this helps,

Pam

That's a tough question....how do you cope....it's not always easy. Sometimes it's hard to even keep your head above the water. When I am feeling really bad about my situation, I remember other people who are worse than me, I do community service type things. I delivered meals on wheels for a while, once a week, I'd see people with brain cancer, or in wheelchairs, etc. I think I was a little different than most who delivered, I'd take time and talk with these people, because I think what they needed most was someone to listen. It's healing to talk to others. I would also take my young kids with me, so they learn early on, just because mommy is sick, and has to take god knows how many pills, there are still other people out there who need us. My daughter and I make jewelry to sell and raise money for people with cancer. Not for research, but just for things they need. Last year we gave the money to a little boy with cancer, he was 5. His meds were $100 a DAY! We asked that the money go toward a nice Christmas he otherwise wouldn't have had. It really makes you feel good to do for someone who needs it.

I was bitten, had 2 ticks embedded in my back, when I was 9 years old . In Texas. I had little symptoms growing up, but we just wrote them off as one thing or another. Then , a week before I turned 21 I got VERY sick. I had just met the man I ended up marrying, and he did what he could to take care of me. Nobody could tell me what was wrong, only possibly a mutated strain of mono.

After that, my neck was really bothering me. I was dx with degeneritive disc disease, given viocodin, which I can't take anyhow, and nsaids, and sent on my way. So I found a chiropractor, after seeing her for a few weeks, my sacrum felt like it was splitting in two, so I stopped going. I also felt like I was going crazy....but we were planning a wedding, paycheck to paycheck...stress right.... lymerage.

Then I got pregnant with my first child. all hell broke loose. I got a rash all over my face, they said was poison ivy! I felt like I was going to die I was in so much pain. They even gave me tylenol with codeine while pregnant. I was scared to take it, but they assured me the stress of the pain I was in was worse for the baby. So I took it sparingly.

With my second child, same thing, only WORSE! And had a baby to care for. Same rash, same symptoms, plus more. After having him, my doc at the time ran tests .... an x ray was his idea of tests. So we moved, and I switched doctors. To our current doc. he listend to me, ran tests, mri's ct scans for the headaches. he saw a tumor on my thyroid from the mri...not even what we were looking for. he dx me with fibomyalgia, and mixed connective tissue disorder (lupus, RA, scleroderma), I saw a rheumotologist who concurred. I had surgery to remove the tumor on the thyroid and all seemed fine. Then I felt another tumor on the other half a few months later. The ENT said that was strange, so he opened me back up and took the rest of my thyroid. Now on medication for that.

Somewhat personal here, but may help others. I have never stopped lactating since my son was born, he'll be 4 next week. and I found a lump in my breast. the biopsy came back suspicious, so had surgery to remove that....I thought with the discharge and that, for sure it was cancer. but no it wasn't. then again it happend, the surgeon didn't want to take it out again, she said it was the same thing, but I insisted. breast cancer is HUGE in my family, I'd have a double mastectomy if I could.

My kids are my WORLD, I love them so much. I grew up without a father, and I don't know what I would have done had it been my mother I lost. I'm scared to death I'm going to leave them without me. I wonder if even worse, I have infected them with lyme and subjected them to a life of hell. I had them , not knowing I was so sick...I thought I only had DDD. I wonder what I ever did to deserve such a life. I'm a relatively good person. don't drink...I do smoke...out of stress, don't party, don't steal, don't lie, you know, try to treat people how I want to be treated....

My doc pretty much humors me when I ask him to run this or that test. But when I brought up lyme he laughed. Said it's pretty much impossible that I have it. He ran the elisa test, and it was negative. end of subject. BUT I have over 60 of the symptoms. So I found a LLMD in anotehr state, and my IGENIX also came back negative, but he's treating me symptomatically. I've herxed alot, still waiting for those "good" days I hear about...I've had a few, but if I've been infected for 20 years, it will take a while.

My name is Leslie and I went 10 yrs. misdiagnosed. I had pretty much went through all the testing, without any answers.

I would suggest that you look up Dr. Burrascano, from ILADS (International Lyme and Associated Diseases), for his Diagnostic and Treatment Guidlines.

In this packet, you can find, his recommendation's, for supplements and other suggestions, on how to cope. He also will give you an idea, about after you start treatment, if you have tested positive.

You also need to know that Lyme disease is a CLINICAL diagnosis, too.

It is very informative, with a two page checklist, of symptoms.

He will also discuss, co-infection's, which should be tested.

Last, but certainly, not least, you will learn about the Jaricsh-Herxheimer reaction, after beginning tx. It is when your symptoms become much worse, when the spirochetes are dying.

Another new study has found that Alka-Seltzer Gold can help you through your "Herx".

Get rest!

Finally, your regular doctor, can put you on a pain management care-plan, to help you through your pain.

Take care,

Leslie

Tell more about how Alka Seltzer helps?

Pam

God help u

all alone with just a husband for emotional support

Hang in there I don't know what your test results will be (duh) but I know one can have lyme and test negative.

I suggest finding a lyme literate Dr. if at all possible. Or if u have a good relationship with your current doc u could schedule an appt to express your concerns ask if u can go on Doxy 3 times a day, If u have lyme u will get pretty sick with a JR. Also I hope u have read the lyme books out there that would help ignorance is not bliss with this crazy nasty disease U would have to have doxy for at least 4-6 weeks to see if u have a JR and to cover a cycle. The lyme books are helpful. I too worked in the health field

and had your same concerns. Please write if u need totalk Goodluck Alisa

The alkaselzer gold, is aspirin free and full of alkaline. Within a week, I did not need my cane, to walk. Who knows if it may have been the alkaselzer or not, but, Bryan Rosner book," The Ten Best Treatments for Lyme Disease", had mentioned it to help when you herx.

One thing that really keeps me going is learning about my diseases and connecting with people with the same issues, and helping people. I was just talking to a guy in the fibro group, and I told him I really didn't think he had fibro but lyme, got him to a lyme doc, and low and behold, it's lyme and he'll be starting treatment. Had I not reached out, he may have suffered 20 years like I have. I can't tell you how good it felt to point him in the right direction. You are not alone, the people on this site are wonderful, and supportive.