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» LymeNet Flash » Questions and Discussion » Medical Questions » I have proof of spine damage from lyme

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Author Topic: I have proof of spine damage from lyme
roro
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I have my MRI's from 2004 when i first got mningitis-like symptoms, and my MRI's now, and in three years the degeneration from this disease is so apparent it is astounding

the neurologist said there is no way all this damage happened in three years, it takes 15-20 years to get this much damage. vertebrae are worn down, bone spurs, ossified ligaments, narrowed discs, bulging discs.

I wish there was a way to scan the images in, we used to have a scanner and one time i shined a light on my scan and it worked, but the scanner broke.

is there any doctor anyone knows of doing research in this area that might want copies of my slides?

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mushroomman06
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This is very interesting. I am a firm believer that LYME has worked on my spine.

In 2003 I had a back problem, slight sciatica pain caused by bulging desk. Had a exray and took steroids. Was unaware that I had LYME. Back improved but never right.

In 2007 LYME test came back positive meeting more then enough postive bands to meet CDC requirements. In the summer of 2007 had a very serious sciatica nerve attach. Unable to move and bed ridden for 3 weeks, very little activity for the better part of 2 months. With theraphy it has improved but just not right.

Since I only had an exray in 2003, I wonder if a MRI taken now could be used to compare the conditions?

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Cold Feet
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Thanks for the post on the spine-bugs connection. Please email or PM me when you can; I intend to continue my research in this area...maybe do a documentary on this later this year.

I am in contact with a few doctors who are specifically focusing on the Bb-spine connection. But I won't share this information now (sorry).

This is really important stuff (you also want to provide the link to your other post on this; or just use the same topic if is related). Thank you again.

--------------------
My biofilm film: www.whyamistillsick.com
2004 Mycoplasma Pneumonia
2006 Positive after 2 years of hell
2006-08 Marshall Protocol. Killed many bug species
2009 - Beating candida, doing better
Lahey Clinic in Mass: what a racquet!

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njgirl14
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I have dcegeneration of my spine and I am sure it is from Lyme. MRIs from 1999 show this but I was not dx with Lyme until 2005. I think it is possible I have had Lyme for several decades.

BTW my knee is gone too and I need a replacement knee. I also suspect Lyme related.

Cold Feet when you can share this info about Drs PM me. I would be interested. Most Drs I have seen think I am a real puzzle.

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roro
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basically, when I was first sick, my spine looked great except for one little disc bulge. the vertebrae heights were all normal, they were god rectangles, the discs were all thich and had white inside where the jelly is

now they are all worn out deteriorated, bone spurs, discs squashed narrow with no filling, bulges, etc

i need to get them scanned. maybe I can get them on a disc from the radiology place

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kelmo
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My daughter's last resdiual symptom is spinal pain. If she had insurance, it would be nice to get an MRI...
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bettyg
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I'M 58; 1 yr. ago end of this month, i had my left hip totally replaced. when surgeon was putting in my ball/socket joint, he nicked one of my bones.

later he told me my bones are 20 years OLDER than I am...

could this ALSO BE LYME RELATED?

had osteoporosis tests; NONE, but neck is very close on osteopenia to no. stating it's osteoporosis.

but lower spine was a better no. than previous testing; go figure! [confused]

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lucy96734
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Prior to finding out I had Lyme I was having severe back issues and MRIs showed damage. I was 32 but the ortho said my lumbar spine looked more like 80.

Over the 5 years it took to get a dx I went from 1 blown disc to 4 in both lumbar and cervical spine. They could not explain how my spine degenerated so fast.

The good news is that with treatment the PT and exercises help keep it in check and I am functional. I will always have residual pain and issues from the degeneration but it is so much better and I am able to live life now.

--------------------
Lucy

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roro
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dakota's mom, i am not offended at all, and don't take this as an arguement because I am just throwing it out there. i respect your opinion, but i disagree

you are right about one thing, I do not know for sure that its due to lyme. it could be something else. i am one of those "equivocal" tests and I test positive to a number of other things, so it could be anything. but I am convinced that it is a pathological process, and not normal aging.

this all started in 2004, and I started with severe neck pain, pericarditis, and meningitis. I am pretty sure its lyme, but since no organism could be cultured, they termed it "aseptic meningitis" but admitted me and gave me 2 days of IV antibiotics

what I DO know is that all of the damage happenned from that point until now. The "before MRI" is shortly after that, sept 2004, and the "after MRI" is now. So at the time of that illness my MRI looked perfect. see my reply after njgirl to see my description

sure I lifted things and did things when I was younger. I was athletic, lifted weights, hiked, did home repairs, etc, I was very healthy.

but after getting ill, I had to severely restrict my activities to only the physical therapy exercises and a little bit of dancing. I did not do anything in these three years to cause the damage.

also, the pain I am having is severe intractable pain, and it started in 2004 when I got ill. it started overnight when I got the meningitis, the pain was from the meningitis, not from any damage to my spine, because there was no damage at that point.

if you have a reply to refute any of this, I welcome your opinion

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Cold Feet
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Actually, there are plenty of scientific studies which correlate various bacterial infections with spine DDD and related pain syndromes, see this lengthy list of abstracts:

http://adrsupport.org/eve/forums/a/tpc/f/7701036081/m/9771045692

If it quacks like a duck, is it a duck? If it quacks like a dog, but it has a beak, it's still worth looking into!

[Wink]

--------------------
My biofilm film: www.whyamistillsick.com
2004 Mycoplasma Pneumonia
2006 Positive after 2 years of hell
2006-08 Marshall Protocol. Killed many bug species
2009 - Beating candida, doing better
Lahey Clinic in Mass: what a racquet!

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roro
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i do have a pain management doctor, although the one I had for 2 years left the practice and I have a new one now who is not as familiar with my case.

i did see an ortho in the beginning when this happenned and for about the first year. from the start he said that my pain was way out of proportion to what the slides showed (back in 2004) and that there must be a pathological cause (infection, cancer, autoimmune) to it

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psano2
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I don't have proof of spine involvement, but I know my spine is involved. Earlier in my illness my spine used to just ache. As much better as I've gotten after 2.5 years of abx, my back and spine still ache or just feels "tired". When I get a massage and the masseuse presses down on my spine, it just kills me. It feels so tender. When I was well, that never happened. In fact it continues to hurt for several days afterwards, which just wouldn't happen when I was well.

I feel certain that the spine is a repository of Bb and/or other coinfections and that my antibiotic therapy won't get into the spinal fluid enough to get rid of all of it.

I would love to know what kind of research is being done in this area. I think killing whatever bugs are in the spine is essential to getting completely well and would like to know what the latest research indicates.

Patti

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ralph
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So many joints in the spine and connected to the spine (ribs) it is almost certain lyme is conncected to the degeneration.

Seems that lyme in many cases likes the heart, joints and nervous system as primary places to cause damage. roro, your history is an example of this. Mine too. Sometimes it is all 3 areas, sometimes two, sometimes one.

I have horrible arthrits, especially spinal, as do my brother and at least one of my sisters. My dad fell at age 76 and bruised his spinal cord. I had to hold him still while x-rays were taken. I had recently graduated from Chiropractic College and rushed out to view the films. His x-rays were absolutely horrible, seemed as if a hand grenade had been thrown in and there was arthtitis everywhere and calcium deposits everywhere, in the muscles and around the joints. Twenty years ago, now, and his x-rays were in the top 5 worst ones I have ever seen.

None of my family has been diagnosed with lyme except me with EDS but we are from 60 miles north of Lyme CT and we all spent lots of time outdoors.
I had wondered for years why my and my family's arthritis was so bad, and I feel that lyme is a major factor.

bettyg - best book I have seen / used for bone health is "Perfect Bones" by Pamela Levin - should be able to find it at www.amazon.com It is not just calcium and Vitamin D. Good fats, other minerals, good hormones and more.

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bettyg
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ralph, thx for the info on bone health book! i'll make a note of this! [group hug] [kiss]
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Cold Feet
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I am curious if other people have been researching the bug/spine connection like I have for the past few years. I did a search in this forum and found a long list of complaints from people all over noting their spinal arthritis and Lyme infections!

If anyone comes across any more research on this important topic, please post or send it along to me. Thanks!

--------------------
My biofilm film: www.whyamistillsick.com
2004 Mycoplasma Pneumonia
2006 Positive after 2 years of hell
2006-08 Marshall Protocol. Killed many bug species
2009 - Beating candida, doing better
Lahey Clinic in Mass: what a racquet!

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Lymeblue
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Sciatica, disk herniation, and neuroborreliosis. A report of four cases

Arnaud DupeyronCorresponding Author Contact Information, E-mail The Corresponding Author, a, Jehan Lecocqa, Benot Jaulhacb, Marie-Eve Isner-Horobetia, Philippe Vautraversa, Julien Cohen-Solalc, Christelle Sordetc and Jean-Louis Kuntzc

a Physical Medicine and Rehabilitation Unit, Strasbourg Teaching Hospitals, Avenue Molire, 67098, Strasbourg cedex, France
b School of Medicine, Bacteriology Institute, Louis Pasteur University and Strasbourg Teaching Hospitals, 67000, Strasbourg, France
c Rheumatology and Clinical Immunology Department, Strasbourg Teaching Hospitals, Avenue Molire, 67098, Strasbourg cedex, France

Available online 25 September 2003.


Abstract

We report four cases of sciatica in patients with same-level disk herniation confirmed by computed tomography and a final diagnosis of acute radiculitis caused by Borrelia burgdorferi, with a favorable response to ceftriaxone therapy.

The neurological manifestations of Lyme disease are protean, and a potential contribution of concomitant disk disease to sciatica can lead to diagnostic wanderings.

Disk lesions and infectious conditions that can cause sciatica are discussed.

Whether a favorable response to antibiotic therapy should be taken as proof of B. burgdorferi radiculitis deserves discussion.

In practice, in a patient with clinical manifestations suggesting disk-related nerve root pain and residing or having traveled to an endemic area, B. burgdorferi infection should be looked for, as both etiologies can coexist.


Author Keywords: Neuroborreliosis; Sciatica; Disk herniation; Meningoradiculitis

Corresponding Author Contact InformationCorresponding author. Service de mdecine Physique et Radaptation, Hpitaux Universitaires de Strasbourg, Avenue Molire, 67098 Strasbourg cedex, France.


Joint Bone Spine
Volume 71, Issue 5, September 2004, Pages 433-437

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lpkayak
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aarthritis has been a big part of this disease for me too. i have it in cerv, thor and lumbar, knees and thumbs.

knee mri said my knee was "essentially obliterated", surgeon said there wasn't enought cartilage for hime to repair.

cosamine ds -the purple and white box-helped me keep going-teaching PE for years until i had knees replaced last year

thumbs need surgery-i am just not quite ready-but very disabled from them

lower back xray said: severe facet arthritis

i used to be able to control that pain with keeping abdominal strong...

it doesn't work anymore. AND there is often a "clicking" in the loweer back.

does any one else have this or know about it? i feel like if i move wrong i'm just going to "break" my back...maybe hurt the cord-it's kinda scarey

new back doc says "not a candidate for surgery" so ordered PT and is not interested in me anymore

--------------------
Lyme? Its complicated. Educate yourself.

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tickssuck
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One of my first extreme symptoms was a huge herniation of my C6-7 disc. It was spontaneous, leading up to the blow out was nagging neck pain for a few months.

My only other Lyme symptoms prior to the neck pain was night sweats and itchy skin, which I wrote off to "pre-menopausal."

I completely believe the bacteria caused my pain and subsequent rupture, breaking it down and eating away at this area of my spine/neck. My later anterior cervical disc fusion surgery (before Lyme diagnosis) did not provide pain relief at all. Only with tx, is my pain, slowly improving, very slowly.

I have Lyme and ALL co-infections. TS

[ 13. December 2008, 11:23 PM: Message edited by: tickssuck ]

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Lymetoo
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I know my spine is a mess. I'm about to find out how bad my lower back is. I know it's bad, but an MRI next week will probably confirm what I already know.

I have bone spurs in my neck and my sciatic nerve pain has become a real problem. Wish I had an earlier MRI to compare, but I guess it wouldn't be like yours, since I've had Lyme most of my life. [and I'm "OLD" [Big Grin] ]

Hope you are coping, roro. Good to see you again! [hi]

--------------------
--Lymetutu--
Opinions, not medical advice!

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djoxvt
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As I lay here, I feel a burning ache in my spinal area. So, yes, you have a point
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kelmo
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Crap! This is disheartening. My daughter started her illness with back pain that waxed and waned.

For the last year, it has not let up at all.

Recent MRI showed that EVERY disk in her thoracic and lumbar region is bulging. She has developed a cyst called a syringomyelia.

quote:
My only other Lyme symptoms prior to the neck pain was night sweats and itchy skin, which I wrote off to "pre-menopausal."
My daughter gets itchy when she is herxing. We assume it's a load of toxins. But, we read that bacterial infections flood the body with histimines. She takes Zyrtec for the itch, and spends time in the sauna.

She has constant sweats, which is also a symptom of the syringomyelia. I know it can be Babesia, and she is treating that, but the sweats are always there.

Roro...I hope you have gotten relief. We are just starting the journey. She sees a neurologist on Tuesday. Pain doctor has been worthless.

Kelmo

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paulieinct
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My spine is so degenerated that doctors have looked at my xrays and mri's and then turned to me and said, "What happened to YOU?!"
I felt like saying, "Good QUESTION - you're the friggin' doctor - YOU TELL ME!!"

I strongly believe 15 years of Lyme, mabe longer even, have ravaged my spine. Had to have decompression surgery 2 years ago to open up the central spinal canal. The canal was completely blocked, and I was going numb in my legs, twitching, cramping, had to sleep in a sitting position for 2 mos. before the surgery.

Borrelia loves tendons and ligaments. That is because there is very little blood circulation in these tissues, and the bugs can evade the immune system. Look at all the tendons and ligaments in your spine. My LLMD told me Borrelia HATES oxygen, that Bb is anaerobic. With little blood circulation, there is very little oxygen.

Since my diagnosis 5 1/2 mos. ago, I have been able to put all the pieces of the puzzle together. Now all my symptoms of the past 15 to 20 years make sense.

I know I cannot undo all the damage to my joints, but I am hopeful that by stoppng an ongoing infection, I can heal.

What I'm really waiting for is PIG PARTS. No lie, they are working on developing a pig clone that will not cause organ rejection and we can harvest and transplant all these pig parts and organs. Sign me up!!! OINK!

--------------------
Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that.

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Cass A
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I had serious lower back problems for many years before my DX with Lyme disease--including a herniated disc, being bedridden for about two months one time, and now a completely degenerated disc.

I was in the food preparation and service industry, so did lots of long-druation weight lifting. However, I'd had a lower back that "went out" sometimes for years before that.

VAX-D--a spinal decompression treatment, inversion table, and then prolotherapy helped. Also, it was found that one leg is shorter than the other, and wearing a heal lift has helped to stablize things.

I was bitten by ticks when I was a child....But, the one with the rash was in 1998.

My DXA scan (recent) isn't vey good, either.....

Best,

Cass A

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cgo
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I guess this explains why I always feel like my spine is fusing together... I didn't realize that it actually, legitimately was. Good grief.
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roro
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wow, someone dug up this post from march. I have not been here in a while. the way I knew was some people sent me PM's and one referred to my post, so i found this on the first page.

I had back surgery in july. my back was beyond healing with just antibiotics. I needed extensive spinal reconstruction.

The surgeon said my nerves in my lower back were crushed so bad they were thin as ribbons. I had a bilateral spondylolysis and spondylolisthesis at L5. For those who don't know what that means:

it was much worse than just disc problems. the vertebrae was broken off from the lamina on both sides and slipped over 25%. I now have four screws and two rods holding my spine together.

It has really helped a lot. i was getting ready for a wheelchair, couldn't walk more than a block, neuro-claudication, and bladder and bowel involvement. They didn't say it, but my opinion was that it was cauda equina.

I was going to a neurologist who i thought was going to help me, believed in lyme, and was saying he would do IVIG. But now after the surgery and how much it helped, he is not so sure, plus I think the ID ducks at Hopkins got to him as he is spouting IDSA nonsense now about tests and so forth.

although I am better, the arthritis is still attacking my joints and i fear I will just need more surgeries later in other parts (neck, back, knees, hips) if I cant stop the disease process.

I am losing faith in antibiotic therapy, and not sure there is a cure for this once its gotten this bad.

still havent found anyone interested in seeing my slides.

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Cold Feet
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I just wanted to bump this topic up to see if anyone in this topic has had any other insights about this original topic. Roro, are you still around?

--------------------
My biofilm film: www.whyamistillsick.com
2004 Mycoplasma Pneumonia
2006 Positive after 2 years of hell
2006-08 Marshall Protocol. Killed many bug species
2009 - Beating candida, doing better
Lahey Clinic in Mass: what a racquet!

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ugagal
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Very informative thread and I'm glad it was bumped up.

I was officially diagnosed with Lyme this past February. In April, my LLMD ordered a PET scan which revealed severe arthritis in my left shoulder and ankles. It also revealed several lesions on my spine. I then had a bone scan and the radiology report read "occult arthritis in shoulder and lesions on spine are most likely of an infectious origin."

My left shoulder will probably have to be replaced and I'm praying that my IV antibiotic therapy will take care of the spinal lesions.

Lyme is a very insidious disease.

[ 07-08-2009, 12:21 PM: Message edited by: ugagal ]

--------------------
My comments on this site are not intended to be taken as medical advice as I'm not a physician.

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nenet
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Thank you for bumping this Cold Feet - I never saw it the first couple go-rounds. Very interesting.

Bumping for you again.

--------------------
Dr. C's Western Blot Explanation

Lymenet Success Stories

ILADS Treatment Guidelines

Medical & Scientific Literature on Lyme

"Long-Term Antibiotic Therapy Improves Persistent Symptoms Associated with Lyme Disease"

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Cold Feet
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Thx for your reply Nenet. I am glad we share interests.

quote:
Originally posted by ugagal:
I was officially diagnosed with Lyme this past February. In April, my LLMD ordered a PET scan which revealed severe arthritis in my left shoulder and ankles. It also revealed several lesions on my spine. I then had a bone scan and the radiology report read "occult arthritis in shoulder and lesions on spine are most likely of an infectious origin."

My left shoulder will probably have to be replaced and I'm praying that my IV antibiotic therapy will take care of the spinal lesions.

I am really sorry about this news. I must say that your report is uncharacteristically diagnostic. I sometimes wonder how subjective these reports can be. I mean that this conclusion seems quite reasonable, but the "infectious origin" link is not usually mentioned. So, my questions...

- why is that?! If so MANY people -- patients...know that Lyme Bb AND coinfections are causing arthritis, why isn't anyone getting to the bottom of this?

- how do we get to the bottom of this if no one is TRYING to figure this stuff out?

- how do we talk about it in a more constructive manner?

I recall going to a presentation a while back at a high school on Lyme disease. I was shocked as to how many people literally hobbled into the hall, as so many had arthritis caused by these terrible bugs.

I don't get it! If so many people are stricken with arthritis of the spine, shoulder, knees and hips...why is this problem ignored?!

[confused]

--------------------
My biofilm film: www.whyamistillsick.com
2004 Mycoplasma Pneumonia
2006 Positive after 2 years of hell
2006-08 Marshall Protocol. Killed many bug species
2009 - Beating candida, doing better
Lahey Clinic in Mass: what a racquet!

Posts: 828 | From Mass. | Registered: Aug 2006  |  IP: Logged | Report this post to a Moderator
Dawn in VA
Frequent Contributor (1K+ posts)
Member # 9693

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Feet, I agree with 110%. I don't get why it's continuously ignored.

Perhaps we can organize a symposium of sorts or panel discussion?

I had an appt with an arthritis duck today and we actually discussed this a little.

Of course, he does not believe things of our nature could be from what he calls "active lyme"- quack, quack- the 30 days of it that can be cured with 3 weeks of doxy (closing my ears- lalala), even he admitted that damage can been when the infection is (again, using his terminology) "active".

So if even a DUCKY can admit as much AND LLMD's know it AND we as patients have pre- and post-images showing the often dramatic changes, AND it's been cited in the literature...

Why the heck is the train still sitting at the station?

(I have degeneration of C6-C7 and C7-T1; nuclear bone scan, x-rays, MRI's all confirm the same.)

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(The ole disclaimer: I'm not a doctor.)

Posts: 1349 | From VA | Registered: Jul 2006  |  IP: Logged | Report this post to a Moderator
kellyjk4
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Member # 19731

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This thread really surprised me.

I'm 40 and have been told I have the spine of a 90 year old.

I had reconstructive surgery in 1997 due to severe Spondylolisthesis at L3-4 and L4-5.

Now I'm having horrible pain and pressure in my Thoracic spine.

roro, please pm me when you find out any more information.

Thanks for this thread!

I'm constantly amazed by how much of our bodies are literally destroyed by this awful disease.

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Take care -kelly
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Posts: 330 | From TX | Registered: Mar 2009  |  IP: Logged | Report this post to a Moderator
   

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