Need to vent

On top of Lyme, I've had this other mystery condition for 2+ years - this weird syndrome of constant unrelenting back pain which flares into abdominal or pelvic pain a couple times a month, and every 3 months or so I get a violent flare of it with terrible GI problems, dizziness and fever.

I've seen so many GI, obgyn, and orthopedic specialists, but none have taken it seriously. It's legitimately the worst thing I deal with on a daily basis, even when Lyme symptoms subside this miserable pain is unrelenting - I can barely walk, stand, drive, lay down to sleep, etc. I can't stand up straight when the abdominal/pelvic pain flares up.

All I've ever gotten is that it must be IBS or an ovarian cyst (which they never find one) and I do have a bulging disc in my back, which could possibly be causing some or all of the pelvic pain, but I don't know.

No one is even trying to help, it breaks my heart to literally start crying in these doctors' offices, begging them for testing and they just tell me to come back in 6 months. I finally found one obgyn who referred me to get a colonoscopy to rule out GI problems, then was willing to do diagnostic laproscopy to rule out endometriosis (much better than the 4 docs before who knew I was in unrelenting chronic pelvic pain and literally wanted to do nothing about it) - but I had to move right after seeing that doctor so now I have to start all over because I can't drive that far anymore.

I'm in an HMO so I need to get my PCP to refer me to any specialist - all I've wanted for years is to do an MRI of my back and see if there's anything I can figure out to do to make this pain stop, and now more than ever I want to get it done before I put myself through diagnostic surgery!

And on top of it, I keep having to meet with new doctors in all of these specialties and tell them I'm disabled because of chronic lyme disease, and I get treated so poorly with so much judgment and disdain - I get mocked for taking herbs - even had my new PCP tell me she would only "let" me continue to take my supplements if I passed her little test of being able to tell her (with my cognitive issues no less!) on the spot exactly what each one did. I did pass the test, but she rolled her eyes the whole time. She interrogated me about my current doctor, pointing out that the reason most of my treatments aren't covered by insurance is because they're nonsense. I guess that's why the Philadelphia Eagles get their sports injuries treated by my doctor's nonsense medicine!

I know I can't do much about it, and sadly I know they're never going to take me seriously even though I'm a smart, well-educated woman and they have never so much as googled lyme disease...but it's just really, truly wearing on me lately. Thanks for listening!

It's tough - I'm already pretty limited having my mother and boyfriend take time off of work to drive me to my lyme doctor appointments....I guess if I absolutely needed to I could go to the last doc but still I refuse to do surgery (especially while having lyme and especially since the pain began right after a surgery!) until someone takes a painless picture of my back.

I just wish I could call this illness anything else. I don't care what doctors believe about the cause of my illness. I just wish they'd understand that because of SOMETHING (lyme or they can believe it's voodoo, I don't care) I have terrible pain and incredible fatigue and a body that needs to be treated as that of an infant or elderly person. Meanwhile all I get is a head scratch and a "that's weird, you shouldn't have damage to so many joints at only 27..."

That's all I hear anymore, "you shouldn't have the symptoms you have." Not especially helpful.

So sorry you're having to go through this...it's bad enough when we have the Dr's support to go through that kind of pain...but with the 'eye rolling' and just general lack of concern is sooo wrong!

Two thoughts came to my mind:
1. Is it possible it's lyme related...or has a LL Dr. ruled that out? I'm just wondering how anyone could determine that something isn't lyme related.

2. You haven't had an mri of your back yet? I would push for that...even self pay. I know they're expensive (I paid for one here in Canada and it was just under a thousand I had to shell out). But, it may provide you with an answer.

Sorry, but I don't know your history...don't know how far along you are in lyme treatment, and if you've had significant improvement or not.

Extremely sorry you have to deal with horrible, brain-washed doctors. It's very rough. Hang in there and stay strong. You're taking a stand for Lymies! That is important. You're a good person for it.

Your symptoms sound like Bartonella to me. Bart can cause abdominal and pelvic pain, back pain, dizziness, all kinds of GI problems and fevers. I have all these symptoms (Bart). Bart is a nasty bug!

Hang in there Borderlyme. Know that we're here for you! Big HUGS!!!

My current doc says I don't have bart anymore...maybe she's wrong...would make sense considering my foot pain has gotten worse which has always been an indicator for me that bart is flaring up...

So stressful, but thanks everyone for the advice and kind words!

What you have endured is not something most people have to encounter. It isn't fair. I think us lymies really have to be our own doctors, and being on healingwell.com is a good indicator that we have needed to seek medical attention elsewhere. It isn't fair, but I have learned to empathize with sick people, with all the people that were affected by the AIDS epidemic in the 20th century without any help, with the people in Africa who suffer from infections in the masses with little help, and just about all people who have suffered chronic illness. It is a hard experience, it is a humbling experience and I know it tears us down in one way, but it gives us perspective unlike our peers. I really enjoy going to IV appointments and hanging with cancer and Lyme patients; we are such an educated group - more so than medical doctors in many ways! The problem is that we need help, and we can't doctor ourselves without assistance, medical resources, medical coverage, awareness, and diagnostic tools. I hope you can work with your doctor to at least do appropriate blood tests so that you can start working towards better health. In terms of finding doctors that will acknowledge your illness, that's tricky :S I have found some great doctors, but more not-so-great doctors. This is why I am on healingwell, and why I have taken my health into my own hands as much as I can without going bankrupt!

I'm so very sorry, Borderlyme.
But your situation sounds soooo much like the one I went through, only I went through it before I knew I had Lyme.

Do you have constipation regularly? I did and the reason why was because of intestinal cramping, which got severe at times - so severe that I couldn't move off the couch for days and would lay there, curled up in a ball, crying my eyes out because of the pain.

I had pain pills, which helped a lot, but once those ran out, I was always worse off because pain pills cause even more constipation - a vicious cycle to be sure!! I had tried a few other drugs, but nothing helped even as much as a heating pad - and that didn't do much.

I was ignored, patted on the head and talked to in a very condescending tone, told I needed to remove my ovaries and so much more, but I did finally find something that works - a combination of three herbs: 1 part licorice root, 1 part peppermint leaves and 1/2 part white peony root. I had a Master Traditional Chinese Medicine doctor start me on this and my pain and cramping has been very controllable since then.

I would encourage you to consider that it may be that your intestines are cramping and that's why no docs seem to be able to help.

Borderlyme,
So sorry to hear of your struggle. It's so hard to run in circles like that.

I had severe back and upper GI pain that the docs were convinced was a gall bladder issue. I think they would have cut me open right there if they could have. ;) Turns out it was lyme related, I just didn't know that for another year or so. (yes, I do still have my gall bladder. haha)

Hang in there.
Lots of HUGS!!!!!!

Borderlyme, any burning, like a ball of fire in your pelvis? And do you pee a lot?

Unfortunately, I don't really know. I didn't discover that this was such an issue until I started seeing my Traditional Chinese Medicine Doc. You could just find an herbalist and see if they will either make up a week's worth of the herbals that I use (since all they do is stop cramping), or buy the herbs yourself and make your own capsules. You would likely notice something within a weed's time if that was your issue.

Does your pelvic pain hurt to the touch? If so, this happens to me every so often and lasts around 24 hours. I get a fever and Lightheaded.