About 8 years ago I had a classic case of Lyme Disease, even though the test came back neg. A year and a half ago I started having spinal pain, and it got increasingly worse until I could barely walk/function. I was diagnosed with osteomyelitis, a bacterial infection that grows inside your bones, even though no bacteria grew from my bone biopsy. I had 2 months of IV antibiotics along with about 3 - 4 months of oral anti's. It cleared it up wonderfully, to the point of I even went skiing this winter. It is now back, and I'm going for my 2nd bone biopsy in 2 months. I'm "a mystery", according to my ID doctor. Again, no fungus or bacteria has grown from my latest biopsy. I have mottled spots on my vertebrae on the MRI. Has anyone else heard of or had a problem like this? I go for my next biopsy this Tuesday. Thanks.
Posted by SouthernCO (Member # 11167) on :
There are similarities between your very brief description of symptoms of osteomyelitis and what I'm experiencing with Lyme. Don't know if it might help or if I'll waste your time and my energy, but I'll give it a try.
I have been diagnosed with severe degenerative disk disease in the lumbar spine. It is severe enough that I scheduled disk replacement surgery (L5-S1 to start with) for summer, 2006, at Johns Hopkins. Fortunately for me, the surgery had to be rescheduled and was subsequently cancelled by me.
While I was waiting for my appt, I had started doing my own research on Lyme disease, then in April, 2007, I was diagnosed with Lyme by an LLMD.
In hindsight, the initial Lyme infection in August, 1992, seemed to attack the same area of the lumbar spine. I was not treated for Lyme, thus after 2.5 years of being relatively symptom free, the chronic Lyme symptoms appeared literally overnight (in the morning of Dec. 21, 1994). My chronic Lyme causes neuropathic symptoms (pain, numbness, etc.) in the lumbosacral area of the spine as well as along the path of the peroneal nerve which is formed by the L5, S1, S2, ..., nerves. The peroneal nerve begins at the outside of the knees, splits into 2 main smaller nerves (deep and superficial peroneal nerves), then flows down the outside of the calves to the feet.
From the knees down is exactly where my symptoms have appeared since chronic Lyme set in. (I was able to figure out all of this with extensive help from the internet. I have read at least one other Lyme patient out here who had to figure out her own very similar case. How anyone with no background in medicine could figure this out, while dozens of drs. with decades of medical training had no clues, is a medical mystery in itself ).
Very long story short, I have told drs. for all of these years that I have had an infection in the spine affecting the nerves in my legs. Of course they all assured me that, IF I had an infection, it was only in my head .
I have just started treatment for Lyme, but the good news is that the pain symptoms (but not the fatigue) have improved dramatically.
Hope that this very rambling and painful story is of some help (and hope) to you.
Best of luck, Dave
[ 28. July 2007, 02:47 PM: Message edited by: SouthernCO ]
Posted by hshbmom (Member # 9478) on :
You may find your symptoms listed in the first symptoms document.
There is an extensive list of symptoms with medical references.
I may have read about bone cysts due to Lyme here. If not, maybe you'll find something similar.
Also, you may want to contact Igenex. They can test tissue from the bone biopsy for Lyme. Please contact Igenex to find out how to send your sample...such as what type of container to mail it in.
igenex.com
Igenex wants specimens submitted early in the week so they are fresh.
You may have to push for this and be willing to send it to the lab yourself. Call Igenex, they're willing to talk to you and explain how to submit tissue.
Posted by hshbmom (Member # 9478) on :
Hi Erin,
I found references to bone problems on page 18 to 21 of the Symptoms document at Lyme Info.
``All physicians must now realize that Lyme disease is not rare and requires serological evaluation in a wide variety of clinical settings, including patients thought to have septic arthritis or osteomyelitis and children with arthritis and uveitis.''
Bone pain/erosion/ osteomyelitis ``Spirochetes can be demonstrated in the lymph nodes, spleen and bone marrow and liver.'' (1)
``The bone marrow involvement of late disease is characterized by plasmocytosis.'' (3)
``In severe cases, chronic Lyme arthritis may lead to the erosion of cartilage and bone'' (5)
``Later in the illness, the joints of some patients showed typical changes of an inflammatory arthritis, including juxta-articular osteoporosis, cartilage loss, and cortical or marginal bone erosions.'' (4)
``the presence of spirochetes in a bone lesion was documented both by culture and by the polymerase chain reaction'' (6)
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