I was bitten by a tick in 2006. After a lengthy search for help, I was in treatment for about 8 years, most of that time on multiple antibiotics.
My symptoms were terrible headaches, body aches, etc. They were probably not as severe as many that I have read about. I got about 75% better and stopped treatment because I was not seeing more improvement.
Fast forward 7 years and I am having severe back pain issues and just found out that I have significant scoliosis along with spinal stenosis.
I am facing a difficult surgery. Trying to avoid this, my doctor has strongly recommended an epidural steroid injection.
The doctor has asked me to explain the risk. My memory is that Lyme patients should never get steroid injections. Is that correct? Is this true when not being treated?
I thank you for any help you can give.
Posts: 2 | From CA | Registered: Aug 2024
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kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
Steroid use with Lyme patients suppresses the immune system. A system already suppressed by the Lyme pathogen borrelia. That is why they tend to be avoided. But not totally. I have spoken with people whose Lyme docs put them on steroids as well as treatment. Mainly because their inflammation was so severe, as in arthritis type symptoms.
Anytime my son, who never really responded to antibiotics and has chronic Lyme, needs to take a steroid I have the physician cover him with antibiotics as well. So far the doc has been willing to do so.
Both of the conditions you describe are fixed by surgery. I find that insurance companies insist on trying PT and steroids and showing a failure before they are willing to pay for surgeries. So you may have no choice.
But since you say that you got 75% better and have been off treatment for 7 years, it may not be an issue at all.
Posts: 1761 | From Maine | Registered: Jun 2004
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“ More evidence has accumulated indicating the severe detrimental effects of the concurrent use of immunosuppressants including steroids in the patient with active B. burgdorferi infection.”
“Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course. If immunosuppressive therapy is absolutely necessary, then potent antibiotic treatment should begin at least 48 hours prior to the immunosuppressants.”
“Absolutely no immunosuppressants, even local doses of steroids (intra-articular injections, for example).”
“ If treatment can be continued long term, then a remarkable degree of recovery is possible. However, attention must be paid to all treatment modalities for such a recovery- not only antibiotics, but rehab and exercise programs, nutritional supplements, enforced rest, low carbohydrate, high fiber diets, attention to food sensitivities, avoidance of stress, abstinence from caffeine and alcohol, and absolutely no immunosuppressants, even local doses of steroids (intra-articular injections, for example).”
Dr Burrascano also advises IV therapy for patients who were on steroid therapy before they were diagnosed with Lyme Disease, as their illness presented with more severity.
INDICATORS FOR PARENTERAL THERAPY
(The following are guidelines only and are not meant to be absolute. It is based on retrospective study of over 600 patients with late Lyme disease.)
• Illness for greater than one year * Prior immunosuppressive therapy while infected with Bb. • Major neurological involvement • Active synovitis with high sedimentation rate • Elevated protein or cells in the CSF
Here is recent LymeNet post about steroid use in POTS, which IS allowed, as POTS can be reversed during antibiotic treatment for Lyme disease.
Tickless, there are other ways to manage your back disease. Prolotherapy is an option. Proper back health, no lifting of heavy objects, no twisting of back or trunk, aquatic therapy and back stretches and exercises. There are others also.
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
I second the recommendation of Prolotherapy!! I've had tons of it, as I believe that I've always had undiagnosed Ehlers-Danlos. It's helped me a ton. Get Prolo.com
In addition, Rolohing, or Structural Integration, (both f form of deep bodywork) can help a lot. I've had lots of experience with all of the above.
Posts: 3792 | From around | Registered: Mar 2008
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