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» LymeNet Flash » Questions and Discussion » Medical Questions » serious back disorders continuing from lyme?

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Author Topic: serious back disorders continuing from lyme?
islandgirl
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In Sept '03 I hurt my back and spent the next FOUR months in bed, chiros, trying to exercise, massage, etc. Would not resolve. Certain muscle groups in back would not respond, even with professional help.

In Dec. GP ordered a cat and MRI scans which showed multiple lesions in brain, thought it was MS or stroke.

In Jan began my rapid, total descent into lyme hell. After five months with having various tests and specialists shaking their heads and saying "I don't know", I found my LLMD and began antibiotic treatment.

Hey, along with the usual herxs and bad times, I began to see improvement after 6 months. During all my antibiotic time, my back was GREAT!! Never thought much about it because rest of symptoms took my attention. But, my back was not a problem.

Went off antibiotics after 8 months due to medical insistence and did sorta ok for 2 months.

BAD NEWS: Began having bad back seizures and problems,enough to get out the back belt and start visiting the chiro and massage again. Still didn't see a connection but praying for not another 4 months of incapacitation.

BINGO THE LIGHT COMES ON!!!

Are all my back problems from lyme?? Did going off antibiotics stir up the 'ketes again?

This is really important...I am in the health field but never put the possibilty of my back being lyme driven. Amazing.

Would appreciate comments...
Thanks


[This message has been edited by islandgirl (edited 22 June 2005).]


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lou
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This is definitely a possibility. A lot of us have had Lyme caused back problems. I thought mine were permanent damage, but when the right abx were used, they got better.

Spirochetes seem to head especially for places that are already injured. So, the prior injury to your back may have attracted them. I have an old ice skating injury that attracted ketes. When I say old injury, I mean decades old! Don't know the technical explanation for why this happens, but it does.

[This message has been edited by lou (edited 22 June 2005).]


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Lymester
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islandgirl...

the first half of your story sounds so much like mine! My back started in March or April and throughout last Nov,Dec when I started abx treatment. Crippling pain. Called GP for pain medication or muscle relaxants. Went for x-rays, chiro, massage, etc. I then got bit in June and took a month w/abx.

I used this month for "guinea-pigging" myself to abx treatment and self determination of whether or not this was psychosomatic (i'd been laid off), back trouble, or lyme. I'd sit in a lawn chair incapacitated with the pain, but noticed the relief slowly dissappearing during the abx.

Tried to go natural the remainder of the summer but couldn't take it any more. More symptoms became involved and were scaring me.

I have also had a multitude of varying symptoms, but no back pain. I am still on abx.

The only thing I could compare it to would be a broken rib and the healing process involved. It was like my entire upper body muscles and ligaments had been torn and were trying to heal. oooh, i'm so sensitive it's even hard for me to flash back to it.

I would say the test I did with myself in June was also a "bingo" for me.

I would think with the return of the symptoms you should go back on the abx; however, I'm not certain sometimes what comes first... the wellness or the herxing and how can you know if you're herxing in a manner of healing or you need to start abx again?

Anyone? It does sound like you're herxing and the ketes are pissed


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islandgirl
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Thanks Lou. My back problems started from a long ago dance injury (used to be a dancer...long long decades ago!)

Are you still on antibiotics? Could you please tell me what you were/are on? And you are having no further problems?

My llmd said I could go back on them if I want. I was trying to hold off til other symptoms hit a real high but I suspect that the time is now.


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lou
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Yes, I am still on abx. This was a late catch, with co-infections caught even later.

My back is better, but not totally fixed. It got better on a very expensive IV regime. Now on orals. Not sure what my treatment will be in the future. In my own case, I noticed that certain abx work better on particular symptoms. In other words, for me, it took an assortment of abx to hit all the symptoms (not all at once, serially). But, as you probably know by now, people respond to different meds. What works for one person may not work for another.


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janet thomas
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Some hold the opinion that maintainance abx may be necessary for life.
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trueblue
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quote:
Originally posted by islandgirl:
BINGO THE LIGHT COMES ON!!!

OH, DUH! The light just came on here as well.

After most of 4 years off ABX and steadily increasing back, neck, shoulder, jaw... pain with all the fun that includes, I hadn't even considered this.

Thanks guys!

[This message has been edited by trueblue (edited 22 June 2005).]


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Bill ATL
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Islandgirl - You should have an exclaimation point at the end of your subject line and not a question mark.

I am experiencing the exact same situation you are. I am on a pulse regimen: Month 1 = 3 weeks Zithro/Mino then 1 week off. 2nd month = 3 weeks Zithro/Mino, and in that third week add Flagyl, then 1 week off. 3rd month = 3 weeks Zith/Septra, and add Flagyl the 3rd week.

I am currently in the 2nd month week off, and am feeling my original back pain (feels like a pinched nerve) that I had consistently since the onset of my symptoms. It's back just like yours. It is an old injury (according to my Chiro) just like yours.

I believe 100% that the bugs congregate @ old injury spots. It'll probably be the last place they leave too!

I am hoping, and will be monitoring, for the disappearance of the pain again once I start abx again next week!

Just wanted to let you know that you aren't alone!

AND...regarding Lou's comments about certain abx vs certain symptoms...I agree. I had seen in a previous post that Zithromax helps back-related symptoms...and thus far it has (when i'm taking it ).

B

[This message has been edited by Bill ATL (edited 22 June 2005).]


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islandgirl
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Sounds like I'm in good company!

Anyone have scientific papers/articles on this? I would love to get some research that the ID doc MIGHT read and learn from.

Do they ever go outside the boundries of their specialty guidelines? They have so much power...would be great to get them to listen.


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Foggy
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What about the MRI of your spine? My LLMD said that it's hard to differentite Lyme causes of back pain from structural causes, aka. DDD, anular disc tears, a ruptured, herniated, disc or nerve compression which could cause pain irrespective of Lyme.

MRIs aren't an indicator of pain, but structural causes could certainly be a cause of pain.


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shazdancer
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Another aging dancer here...

I also would be interested in articles on this.

I think we may be seeing 2 causes of the back pain, though. One is from the Lyme itself. The other is from the atrophy of muscles due to spending so much time at rest due to Lyme. We start feeling better, try to do some of the things we did before, and bang! the back goes.

I am getting some PT just now for sacroiliitis. It has been nagging at me for months, then one day after walking a mile and a half, it seized up big time! Two weeks of a prescription anti-inflammatory later, I am ready to s-l-o-w-l-y try and work on strengthening the back, and stabilizing my balance, which has also been a mild problem.

Regards,
Shaz


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Carol in PA
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I have several abstracts on file about back pain that was caused by Lyme Disease.

-----------

Title: Neuro-borreliosis or intervertebral disk prolapse?
Authors: Dieterle L, Kubina FG, Staudacher T, B:udingen HJ
Source: Dtsch Med Wochenschr 1989 Oct 20;114(42):1602-6
Organization: Abteilung f:ur Neurologie und klinische Neurophysiologie, St.-Elisabethen-Krankenhaus Ravensburg.

Abstract:
Between September 1986 and November 1988, 17 patients were hospitalized and treated for neuro-borreliosis.

Ten of them had been admitted with suspected lumbar or cervical root or compression syndrome.
Only four patients recalled a tick bite, only three an erythema migrans.

Uni- or bilateral facial paresis was a prominent feature in six patients.

Three of 14 patients had no IgG antibodies against Borrelia, either in serum or cerebrospinal fluid at the initial examination, two had positive titres in serum only.

Despite antibiotic treatment (usually 10 mega U penicillin three times daily) six patients had a recurrence by April, 1989, treated with penicillin again or with twice daily 100 mg doxycycline or 2 g ceftriaxon.

In four of them a residual painful polyneuropathy remains.

Language: Ger
Unique ID: 90032324

-------------

From: Neurologic Manifestations of Lyme Disease, the New "Great Imitator"
Author: Andrew Pachner
Source: Review of Infectious Diseases Vol. 11, supplement 6 Sept-Oct 1989

"A washington D.C. business executive had developed pain in both his shoulders and arms.
The pain described as aching or gnawing and sometimes electrical, was worse on the left side.

A diagnosis of cervical disk disease was made., and a number of remedies appropriate for such a diagnosis were attempted. None was sucessful.
Subsequent computed tomography and magnetic resonance imaging of the cervical spine revealed a small right C5 disk.

The patient's discomfort was attributed to this disk despite the fact that he had bilateral symptoms that were more severe on the contralateral.......serologic studies for Lyme disease were performed.

The result was positive....A positive Lyme serology was confirmed in my lab...therapy with intravenous penicillin ..was begun. The patient has done well, with resolution of his pain and no progression of his disease...."

--------------

Meningoradiculoneuritis mimicking vertebral disc herniation. A "neurosurgical" complication of Lyme-borreliosis.
Authors: Meier C, Reulen HJ, Huber P, Mumenthaler M
Source: Acta Neurochir (Wien) 1989;98(1-2):42-6
Organization: University Department of Neurology, Inselspital, Bern, Switzerland.

Abstract:
We report on 3 patients with meningoradiculoneuritis (MRN) due to Lyme-borreliosis (LB), which presented clinically as vertebral disc herniation.

In 2 cases the underlying infection was discovered only after unsuccessful neurosurgical treatment.

In the differential diagnosis between MRN and disc herniation the following criteria are suggestive of MRN and should raise suspicion of a non-discogenic aetiology:
History of tick bite or erythema chronicum migrans,
fever or general malaise,
mono- or oligoradiculopathy with absent or insignificant lumbar pain
and complaints of a burning character of the radiating pain.

In suspicious cases we recommend blood investigations including antibody determination against borrelia burgdorferi and CSF investigations including cell count and cytology, protein and glucose determination, nephelometry and isoelectric focusing to exclude MRN and other conditions that may mimic disc herniation.

Language: Eng
Unique ID: 89300369

-------------

Title: Meningopapillitis disclosing Lyme disease
Authors: Gerard P, Canaple S, Rosa A
Source: Rev Neurol (Paris) 1996 Jun-Jul;152(6-7):476-8
Organization: Service de Neurologie, CHU Amiens.

Abstract:
A 65 old year woman was admitted to the hospital for a low back pain, a fever and an elevated sedimentation rate.
Four months later she noted a progressive visual loss first affected the right eye (visual acuity: 6/10) and then the left (visual acuity : 6/10).
Fundus examination showed a bilateral papilledema. CT Scan and MRI were normal.

A lumbar puncture disclosed a lymphocytic pleocytosis (68 leukocytes/mm3), an increase in protein level (1,9 g/l) and oligoclonal bands.
A serologic test for B. Burgdorferi was positive both in blood (1/64 degrees) and n cerebrospinal fluid (> or = 1/128).

The patient was treated with intravenous ceftriaxone 2 g daily for 2 weeks.
Fifteen days later the low back pain had disappeared and the CSF cellular count had decreased to 20 leukocytes/mm3.

Seven months later, CSF was normal (2 leukocytes/mm3, protein level: 0.65 g/l.);
Titer against B. Burgdorferi had improved to 1/160 in serum and 1/16 in CSF;
visual acuity had improved to 8/10 on left, and was the same on right.

Language: Fre
Unique ID: 97099678

------------

Title: Persistent leg pain (clinical conference)
Authors: Satz N, Dvorak J, Reich C, Knoblauch M
Source: Schweiz Rundsch Med Prax 1990 Jul 3;79(27-28):886-8
Organization: Medizinische Abteilung Kreisspital M:annedorf, Z:urich.

Abstract:
A 72 year old patient suddenly experienced severe lumbar pain irradiating into the right leg.
Later on, weakness of the muscles thigh appeared.

A thorough radiological investigation which showed degenerative alterations of the vertebral column did not supply an explanation.

After a pathological titer against Borrelia burgdorferi was found in serum and radiculitis was detected on EMG, the diagnosis of Lyme-Borreliosis of the nervous system could be confirmed by analysis of the cerebrospinal fluid.

Under intravenous antibiotic treatment with Ceftriaxone (2 to 4 g daily for three weeks) the symptoms regressed completely, and the pathological findings in the CSF regressed. The significance of some findings in CSF in relation to Borreliosis of the CNS.


Language: Ger
Unique ID: 90326934

-----------

Source: Brain (1992), 115, 399-423
Title: The Clinical and Epidemiological Profile of Lyme Neuroborreliosis in Denmark 1985-1990
Authors: Klaus Hansen and Anne-Mette Lebech

Painful sensory radiculitis
Radiculitic pain was a major symptom and present in 160 patients (86%), beginnning 5--90 days (median 19 days) after the erythema migrans. T

he intensity of radicular pain increased significantly with the age of the individual. The onset was in most instances subacute, occuring overnight.

Pain often began in the region of a previous erythema migrans, then migrated and finally became most pronounced axially in the back typically between the shoulder blades but also in the neck or lumbar region.

Some patients had migrating pain almost over the whole body. The pain was described as being of a type never experienced before and was easily distinguished from ordinary back pains.

The intensity of the pain often varied from day to day and typically showed severe nocturnal exacerbations(n=68).
Pain was described by most patients as severe, burning, deep and/or superficial as if located in the skin, and often accompanied by patchy areas of unpleasant hyper- and dysaesthesiae (n=63).
Occasionally a belt-like sensation around the trunk was described.
Severe pain was refractory to morphine.
46 patients had radiculitic pain only and never developed focal motor sign.

Before the final diagnosis of neuroborreliosis was established, the painful condition was often thought due to other disease, e.g. herpes-zoster neuralgia, cervical or lumbar nerve root compression, facet syndrome, brachial plexus neuropathy, polymyalgia rheumatica, myocardial infarction or kidney concrements.

In one female a cholecystectomy (gallbladder removal) was performed, three patients underwent a biopsy of the temporal artery, three an iv pyelogram, seven bone scintigraphy and 17 a myelogram, before the final diagnosis.

Some patients presented with an agitated mental state....Thirteen patients were intially suspected of being hysterical and several were examined by a psychiatrist because of the apparent disproportion between their dramatic complaints and the lack of signs of disease.

------------


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hatsnscarfs
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The rib pain that was wearing me out since November finally stopped last week and was immediately replaced with horrible back pain and muscle tightness. It is very painful and hard to walk.

I thought perhaps it wasn't the Lyme even though I suspected it was. Today the pain went from really bad to almost gone in a matter of minutes. Just then I got lots of swirling, vibrating tingling sensations racing in circles around my upper back. Clearly Lyme. The back pain soon returned but was not quite as bad.

Now the area where the tingling was is sore and achey. The key thing that helps me identify that a symptom is Lyme not a normal problem is that symptoms that seem like a serious injury suddenly disappear and then reappear. It is like the symptoms have an on/off switch. They don't improve gradually like they would normally.

I have been to the chiropractor twice this week and had a massage. Each helped for a little while.

So many pains & injuries I've had thoughout my life are reappearing now that I've changed meds. I now believe I've had Lyme for a long time and it was the cause of so many problems that no Dr. could solve. This includes, back pain, knee pain, chemical sensitivities....

hatsnscarfs


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islandgirl
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hatsnscarf...that is interesting, how the symptoms go away quickly, unlike the gradual progress. I notice this as well...between the shoulders, lower back, right side, left side, in the bones of the spine...

I cannot professionally explain how or why it shifts like this. I just know I don't want it to stabilize in the low back and knock me out for a solid 4 months as before.

And to my ageing dancer friend Shaz, true, we have atrophied. Hard to know what is what...

Thanks for the articles, carol, and all the other responses. I so depend on the clarity and passion and concern of lymenet people...


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Aniek
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I've shared before how I control my back pain. I had severe pain, mostly upper back between the shoulders. It felt like my muscles were being torn from the bone and sent referred pain into my hands and wrists.

I tried physical therapy including myofascial release and Feldenkrais. It all made it worse until I started the magic little pill they call Flexeril. I take 30 mg a night (it took about a month to get up to the dose). As soon as I made it to 20mg, I noticed a difference.

I combined the use of Flexeril with continuing to see my physical therapist. We did hands on myofascial release until I was able to stretch more, and then moved on to strengthening. I now do yoga, ideally 3-4 times a week, in order to keep the muscles strong and flexible. I tried to stop the Flexeril a few months back, and realized my body wasn't ready.


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