...NOT EVERYTHING that goes wrong with our bodies is attributable to lyme or one of its coinfections.

This is not the first time I've said this here, on this forum, and it probably won't be the last.

This time, however, I have an up-close and personal experience that brings me to write this post.

Some background for those of you who don't know me...

I was originally diagnosed with lyme 9 years ago. I was undertreated at that time and I've relapsed twice since then. The latest relapse resulted in my 2/12 year long oral antibiotic treatment under the care of two well-known and top-notch LLMDs. I'm now in remission and off of antibiotics indefinitely. My philosophy concerning the nature of this disease and dealing with it long-term is not pertinent here, so I won't go into it on this thread.

But, you get the idea: I'm a seasoned lymie who has heard all of those `top ten' pieces of advice (great thread, by the way, paulscha)but I have to say I've avoided giving advice as much as possible. (At least that's the way I remember it. ) I've tried some and ignored a lot.

Anyhow... At the time I was originally diagnosed, my husband, step-son and I lived in a fairly wooded area that had lots of deer a-roamin' and we had mice in our storage. So, looking back, a lyme diagnosis is not surprising.

My first LLMD urged me to get my whole family tested for lyme, for obvious reasons: common risk factors, possible sexual transmission to husband, possible to my young son in utero or via breastmilk.

We did not have anyone else tested at that time simply because no one else was showing any outward symptoms of lyme.

However, when my husband started experiencing excruciating and sometimes debilitating back pain a year ago, I wondered whether he had lyme. The GP had him tested for lyme twice through LabCorp and everything came back negative. Then when he developed numbness and tingling below the waste and down both legs to his feet and toes, I REALLY wondered whether he had lyme. He finally agreed to go to my LLMD and get tested only IF the other doctors couldn't find anything wrong with him.

As I suspected, over the course of a couple of months, the GP, the orthopedic doc, the chiropractor, and two neurologists could find NO explanation for his symptoms, even after several blood tests, a lumbar MRI and an EMG.

This was when he agreed to go to my LLMD and get tested thru IGenex. He came back positive for both IgG and IgM.

Well, that was it. We thought we had found the answer. He started abx immediately and within three weeks of starting abx AND physical therapy, the pain reduced 70%.

BUT, there was NO change in the numbness.

This went on through the summer and into the fall and winter.

The pain was better, but with no change in the numbness. My husband decided that he was not satisfied that lyme was causing his symptoms, especially since he had NO other symptoms of lyme. NONE. NOT ONE.

Now, mind you...
...the GP told hubby that all the pain and numbness was just his age showing and that he needed to become more active.
...the ortho had no clue what was wrong with him.
...the chiropractor thought it was problems with a joint in his butt
...the neuro's office thought that there was nothing they could do so they referred him to a `pain management' neuro who said that he had no explanation but they could TRY steroid injections and see if that worked
...the LLMD thought that lyme could be causing polyneuropathy, but that he should have further testing.

So, frustrated that the numbness was not going away, in fact, worsening at times, and worried that something more serious might be causing his symptoms, he found a GP that was willing to refer him to Johns Hopkins. (I hear you Tincup! Just keep reading.)

Meanwhile, he stopped taking the abx to see if the pain would return. It didn't.

The appointment at Hopkins was very interesting. They (the Fellow and the Neurologist) did a VERY thorough examination and looked at the lumbar MRI. The nuerologist said that MRI was certainly `unremarkable', but that given their findings during the examination, there was definitely some sort of anomaly going on.

They proposed that it may be infectious, and the most likely infectious disease they would suspect would be LYME, given his risk factors and the fact that I've had lyme.

They also said that there may be something going on with his spine higher up than the lumbar MRI showed. So, they sent us for a lumbar puncture as well as MRI on the thoracic and cervical spine.

The day after the tests, the neurologist CALLED hubby and told him that they had found a BENIGN TUMOR inside his spinal column, just above the lumbar region, that was compressing his spinal cord.

When hubby met with the neurosurgeon, the surgeon showed him a cross-section of the tumor compressing the spine and said that it was remarkable that he is able to function as well as he has been for the past year.

He will have surgery in a few weeks.

Does he have lyme? Probably. Was the lyme causing his pain and numbness? Probably not. If you remember, the pain reduced when he started abx AND Physical therapy. The physical therapy may or may not have been the reason for the change in his pain. So, he'll have the surgery and then decide what to do about the positive lyme test. Chances are he'll not treat the lyme, not until he shows symptoms.

What did I learn?

1)The exact thing I've said before. NOT EVERYTHING THAT GOES WRONG with our lymie bodies is due to lyme or its coinfections.
2)My husband is a pretty smart guy and kind of cute, too. (well, I already knew that last part .)

It is SO important that we pay close attention to our bodies and not simply assume that any new symptom is just a new lyme symptom or just a herx. SO many symptoms can be assigned to lyme, because, after all, lyme is the `great imitator'.

Don't rule out the possibility that something more serious could be causing your symptom(s) that needs attention sooner than later.

But, remember, the opposite can be true, too. Feeling awful with flu-like symptoms, could just be the flu. A persistent cough, could just be allergies.

Take all advice (especially those that fall within paulscha's top ten ) with a grain of salt. Use your judgment. Listen to your body. Follow your instincts. Who knows you better than you?

Hoping this helps someone,
Pea

[This message has been edited by GreanPea (edited 25 March 2005).]

[This message has been edited by GreanPea (edited 25 March 2005).]

[This message has been edited by GreanPea (edited 25 March 2005).]

I could not agree more with what you have said and could not echo your words more. I have the same situation going on with my son who, yes has/had lyme but also has a serious degenerative genetic metabolite disorder.

I'm just so happy that your husband kept looking even after a lyme dx.

I'm very sorry your husband has had to deal with this. I know about pain along the spine. God, do I. Please let him know we're rooting for him to have a very successful, problem-free surgery and a quick recovery.

His story has a personal relevance for me beyond sympathy for a fellow back pain sufferer.

I've got nasty MRI's of lumbar and cervical spine, areas where I have experienced escalating pain since being disabled by this illness two and a half years ago.

But I also have this stubborn sensation of pressure, like a bubble almost, higher up the spine. It sometimes has a buzzing quality. You've inspired me to insist on a thoracic spine MRI as well, just in case there's actually something there.

So either ask Paul for it or delete from your note to avoid confusion.

Wow, what a story! Glad you pursued to get the correct dx. Yes, I totally agree with you.

Best wishes to hubby on his surgery coming up.

if I would have listened to its just lyme,

I agree, lots of causes other than Lyme.
DDD, tumor, or a herniated disc on a nerve will cause great pain.

And, I forgot to mention that the neurologist and neurosurgeon both feel that the prognosis is excellent, they expect him to make a full recovery!

lymesux, yep, you are right, it was all hubby's tenacity that led us to the correct diagnosis. I'm proud that he was able to stick it out. He's been through a lot.

paul, I hope your journey leads you to the right answers! Thank you for your kind words.

Jodie, I'm so glad that you're not dead right now! Keep your eyes open, girl!

Foggy, you are so right. So many things can cause his set of symptoms. In fact, among the list of suspects, along with lyme and a mass of some sort, the doctors were looking at MS (of course) and, believe it or not, a B12 deficiency... though they did say that his set of symptoms didn't match up with either of those.

So glad to hear that you were able to figure out one of the sources of your husbands pain and I wish him well with his recovery!

Lyme has so many varied symptoms in so many different people that it really does make it difficult to diagnose. I've been going through a similar ordeal to your husbands...I keep going to doctors and they continue to tell me that everything's fine according to all the testing and bloodwork that's been done, but the problem is that I don't feel fine. My gp tells me that all my "aches" are anxiety related and I'm constantly worried that something really serious is going on and that no one can find the source.

I'm so glad that you pushed your md to refer you to another doctor and that you found some answers. I'm still in limbo waiting for someone to take my positive Igenex results seriously but sometimes I do wonder if maybe the doctors are overlooking something else.

I've seen just about every kind of doctor out there and they all say that I'm fine...except the LLMD that I saw who strongly believed that it was lyme. Do you think I still pursue other possibilities or just get treated for lyme? I felt awful almost the whole time that I was being treated with abx and we tried a variety of different ones!

KLS, I would not leave any stone unturned, but that doesn't mean that I would ignore the lyme. You may want to talk with the LLMD about your treatment and ask his/her opinion on further testing that might be done. That's how we handled it. Good luck!

liz, thanks. I think both my hubby and I are feeling very positive, well, relieved that we have an answer that actually has a clearcut solution (no pun intended ), even if the solution is a bit scary. We were getting worried that he might actually have something degenerative that couldn't be 'fixed'.

Thanks, Pea

Very well said. Also best wishes on your hubby's surgery & recovery.

Another back problem that goes undetected is Internal Disc Disruption (IDD). It goes undetected by X rays, MRIs, CAT scans--but the pain is excruciating and debilitating.

Only a specific test (an injection of dye into the disc) done while under fluroscopy can diganose it. They inject the disc with dye and if the dye leaks (and if the pain repeats itself) then it is IDD.

As I understand it, if a disc is torn (which can't be seen by MRIs) our natural chemicals within the disc leak into the spinal column--causing the pain. The remedy is surgery to remove the torn disc.

A lot of folks here attribute ordinary things to Herxheimer reactions.

For example, people can still get colds if they have Lyme Disease. And, it's not a Herxheimer, it's not a toxin die-off, it's a COLD! People without Lyme Disease get these too. Just because you have Lyme Disease does not make you immune to viruses or other ailments.

As a group we really need to be careful how we respond when someone complains of certain symptoms they're experiencing. By constantly blaming it on a Herxheimer may be doing the original poster more harm than good.

On a similar note, not every symptom we experience may be attributable to Lyme Disease.

Tincup also posted a similar cautionary note not too long ago.

Linda

We leave Monday...

Hi Ho, Hi HO, It's off to Hopkins we go...

Wish us luck!

I'm not sure whether I'll have access to a computer during the week, but I'll update as soon as I can!

How's yer tick bite?