I just talked to my pain management Dr for about half an hour. He does not think that the small amount of steroids used in the injection will lower my immune system
I express to him that I was very concerned about this matter since I've also had a very bad reaction to prednisone.
he was very open to talking about it and said he wanted to do what the best was for me but he didn't quite understand why I couldn't have that small doses of steroids.
I didn't know if anybody knew of any good articles or anything that I could fax to him to educate him about this issue since he seems very open to this he said that he likes to have a reason and I don't think I was getting through to him.
of course my own LLMD said it was okay to have steroid injections but he didn't want me to have an ablation and the pain management doctor wasn't quite sure what the reason for that was.
I'm going to see if my LLMD will get in touch with my pain management doctor and discuss the situation but I'm concerned about the steroids.
Posted by Keebler (Member # 12673) on :
- I got so much worse when a doctor told me that and I went ahead with injections in various joints over the years. Always, a huge drop in my health. I had lyme then but did not know it so, obviously, not on any treatment.
I knew enough after a couple times, that they made me feel worse for a long time but was always told the steroid dose was small and would stay at the injection site. It was still a disaster for me.
But, have all other avenues been explored?
There are other things between deciding just between steroids oir an ablation, too. Many other things to consider.
But know that steroid shots can cause bone to crumble, down the road. It's not really helpful at all to healing and can cause bone decay.
Have you consider IV Magnesium? That's where I would start.
. . . Natural Emergency Medicine when used in emergency situations. . . . -
Posted by Keebler (Member # 12673) on :
- UPLEDGER INSTITUTE - for those trained in a safe cranial-sacral therapy. Check out their site to find someone near you, some even on your insurance plan, perhaps.
For those with lyme (and of course for anyone with any vertebrae issues), never, ever let anyone suddenly twist spine or neck.
Upledger technique is very gentle and can help with the myofascial issues that can cause great pain. -
Posted by Keebler (Member # 12673) on :
- Also to put on your radar:
Epinephrine is in many anesthetics (numbing agents). Some discussion on why epinephrine (EPI) can be a rough ride for someone with lyme (especially if they have adrenal issues):
- Are you absolulely, positive that the doctor you have just started seeing (this past month) for lyme is ILADS-educated and thoroughly lyme literate?
How many years has he been practicing? Is his practice solely focused on tick-borne disease or is this just a regular doctor who has agreed to offer some form of limited treatment? -
Posted by jnathan (Member # 41040) on :
My pain dr said it was less than a ml of steroid and he could not understand that it would lower my immune system.
He said he wasnt opposed to doing it without the steroid but he just wanted to understand why.
Posted by jnathan (Member # 41040) on :
Keebler if you send me a pm ill tell you who the LLMD is. He was on the illiads list I even double checked. my husband and I decided we would see him one more time and then make a decision about whether we were going to stay with him or not.
Posted by Keebler (Member # 12673) on :
- The pain doctor is not lyme educated. He is not able to understand the connection. It's not just about immune function for how a normal person would react.
Those with lyme have immune dysfunction, as a result of lyme "flipping" the parts, so to speak. All bets are off, nothing is normal for someone with lyme. Reactions to things that don't normally affect others without lyme can be huge for someone with lyme.
Nothing is simple for anyone with lyme. That is why it's so important to have only LL doctors - for whatever is being addressed. If they don't understand, they can cause a lot of harm. And, with steroids, they last in the body for six months - so it could be a long road back.
I am way over on "the other coast" and probably won't know this doctor. I am familiar with those who present at ILADS conferences or author an article or book here and there but no with others.
Just be sure that you have talked with ALL the lyme support groups within a couple hundred mile radius of the doctor's office so you can get some input from others who have seen him.
I don't know what "on the ILADS list" means. There is no official list that anyone here sends. Most try to feret out the good from the not so good but sometimes, it can be a mixed bag.
If they are an ILADS member and regularly attend conferences, that is good but you still can't always count on that. -
Posted by faithful777 (Member # 22872) on :
Don't do it. Even in small amounts the steroids will circulate through out your body. Take it from someone who had steroids 5 times before I was diagnosed.
You will set yourself back so far, that you will be sorry. The doctor doesn't understand Lyme if he is recommending that you go ahead with the injections.
I don't understand why any LLMD would tell you steroids are okay. Frankly that would make me run from that doctor fast!!
There are other ways to reduce the inflammation without reducing your immune system.
Posted by TF (Member # 14183) on :
From Burrascano:
"More severe illness also results from other causes of weakened defenses, such as from severe stress, immunosuppressant medications, and severe intercurrent illnesses. This is why steroids and other immunosuppressive medications are absolutely contraindicated in Lyme. This also includes intraarticular steroids." (page 4)
"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." (page 12)
"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 ensitivities, avoidance of stress, abstinence from caffeine and alcohol, and absolutely no mmunosuppressants, even local doses of steroids (intra-articular injections, for example)." (page 20)
Please read these quotes in the original document so that you can see how Burrascano has put these sentences in BOLD for strong emphasis.
I believe "on the ILADS list" means that ILADS is sending out the doctor's name when folks go to the ILADS site.
But, you must understand that anyone can get themselves on that ILADS list. It doesn't mean that they are a lyme expert.
In fact, I believe Faithful's doctor told her that ILADS recognizes the problem and is trying to get that list refined for this very reason--because many on that list do NOT follow the ILADS guidelines at all. This is a good example.
Faithful posted about this problem a few months ago, I believe.
jnathan, if you allow anyone to give you steroids while you have active lyme, you are liable to regret it for the rest of your life.
I can see if you needed a steroid because you could not breathe. But, as long as life or death was not the issue, I would not be allowing any steroid in my body as long as I had lyme disease.
Lyme disease (and babesiosis also) have already compromised your immune system terribly, like AIDS. So, to give you a med that will compromise it further can cause horrible damage. It will allow the lyme to go wild in your body, getting into areas that antibiotics may not be able to touch (called niches), so that you have an incurable case of lyme as a result.
Here are some quotes from Burrascano about how lyme disease compromises the immune system. These may help educate your doctor on the danger of steroids:
"Illness present for at least one year (this is approximately when immune breakdown attains clinically significant levels)." (page 3)
"Chronic Lyme is an altogether different illness than earlier stages, mainly because of the inhibitory effect on the immune system (Bb has been demonstrated in vitro to both inhibit and kill B- and T-cells, and will decrease the count of the CD-57 subset of the natural killer cells).... Apparently, in early infections, before extensive damage to the immune system has occurred, if the germ load of the co-infectors is low, and the Lyme is treated, many of the other ticktransmitted microbes can be contained and eliminated by the immune system. However, in the chronic patient, because of the inhibited defenses, the individual components of the co-infection are now active enough so that they too add to features of the illness and must be treated. In addition, many latent infections which may have pre-dated the tick bite, for example herpes viruses, can reactivate, thus adding to the illness.
An unfortunate corollary is that serologic tests can become less sensitive as the infections progress, obviously because of the decreased immune response upon which these tests are based." (page 4)
"Chronic LB infections are known to suppress the immune system and can decrease the quantity of the CD-57 subset of the natural killer cells. As in HIV infection, where abnormally low T-cell counts are routinely used as a marker of how active that infection is, in LB we can use the degree of decrease of the CD-57 count to indicate how active the Lyme infection is and whether, after treatment ends, a relapse is likely to occur." (page 8)
Hopefully, the above quotes will give the doctor the idea that your immune system is already shot, and so any steroids that he gives you will only add to the damage that will be done to your body by the lyme disease and coinfections.