Lyme Disease Support Group

Post edited by: pcohan, at: 02/01/2009 08:16

Shoulder blade pain is very common and a bart symptom I believe, so definitly look into bart treatment. I have had 7 surgeries, and have had chronic lyme disease for either my entire life or at least for 20 some odd years. I faired decent with surgeries, but still wouldn't recomend it. I had my gall bladder out in october, the one surgery I have had while actually IN treatment....it was the hardest surgery I've had. And I've had my thyroid out (twice, in halves), and tumors removed etc, ... so basically my neck was cut open with a 6 inch incision TWICE in the same year, and it was much easier than a laproscopic surgery while in treatment.

Steroids shut your immune system down, giving the bacteria free reign over your body, and there is always a possibility of activating dormant viruses, which is a whole other pandora's box.

pm me, best way to get in touch with me, and we can look for a new LLMD if you're interested. I have a list and we can see what we can do. I am shocked that a lyme doc would suggest steroids.

Never heard of Factive , is that new?

let me know if I can do anything to help

warmest regards

jaime

Two different researchers have provided recent evidence that B. burgdorferi, like many other pathogenic bacteria, can produce neurotoxins. Early clinical trials aimed at removing these toxins have proven quite promising! I will discuss this in more detail in a later section.

More evidence has accumulated indicating the severe detrimental effects of immunosuppressants including steroids in the patient with active B. burgdorferi infection. Never give steroids 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.

The concept of a "therapeutic alliance" between the caregiver and patient must again be emphasized. This means that the patient has to work with and become part of the medical team, and must take responsibility for complying with the recommendations given, maintaining the best possible health status, reporting promptly any problems or new symptoms, and especially in realizing that despite all our best efforts, success in diagnosis and treatment is never assured. The medical team must make great efforts to listen carefully to the patient and not be too quick to dismiss seemingly bizarre or illogical complaints.

link:http://www2.lymenet.org/domino/file.nsf/UID/guidelines

just an excerpt from his treatment guidelines showing a comment on where steroids did throw lyme over the edge: or us

EARLY LOCALIZED - Single erythema migrans with no constitutional symptoms:

1) Adults: oral therapy for 6 weeks.

2) Pregnancy: 1st and 2nd trimesters: I.V. X 21 days then oral X 6 weeks

3rd trimester: Oral therapy X 6 weeks.

Any trimester- test for Babesia and Ehrlichia

3) Children: oral therapy for 6 weeks.

DISSEMINATED DISEASE - Multiple lesions, constitutional symptoms, lymphadenopathy, or any other manifestations of dissemination.

EARLY DISSEMINATED: Milder symptoms present for less than one year and not complicated by immune deficiency or prior steroid treatment:

1) Adults: oral therapy until no active disease for 4 weeks (4-6 months typical)

2) Pregnancy: As in localized disease, but duration as above. Some experienced clinicians treat throughout pregnancy.

3) Children: Oral therapy with duration based upon clinical response.

PARENTERAL ALTERNATIVES for more ill patients and those unresponsive to or intolerant of oral medications:

1) Adults and children: I.V. therapy for 6 weeks or until clearly improved. Follow with oral therapy or IM benzathine penicillin until no active disease for 6-8 weeks. I.V. may have to be resumed if oral or IM therapy fails.

2) Pregnancy: IV then oral therapy as above.

[b]LATE DISSEMINATED: present greater than one year, more severely ill patients, and those with prior significant steroid therapy or any other cause of impaired immunity:

1) Adults and pregnancy: extended I.V. therapy (6 to 10 or more weeks), then oral or IM, if effective, to same endpoint.

2) Children: IV therapy for 6 or more weeks, then oral or IM follow up as above.

[/b]

There are many articles on this, and I do realize that for some it's a short term 'pay off' while you deal with the consequences later. The only case I know of personally where steroids has been warranted is a young woman who has lyme, is only on po doxy, and also she has CIDP requiring weekly IVIG infusions. She developed aseptic meningitis into her second week of ivig, and is on steroids for I believe 7 days. Her Lyme was caught earlier, I cannot say the exact date, but it's in the early treatment guidelines.

To each his / her own opinion, and for some, yes, a 'means to get through' and then 'deal ' later may look optimal or appealing.

Just be cautious, ASK ASK , RESEARCH, AND ASK SOME MORE.

Some steroids when given late in the game, can ruin one's chances of recovery. I have to be honest. Please ask , everyone here is a great help and I see someone up there who has literally been through hell and back about 7 times... Now there's a REAL CASE not an article or an opinion. Living proof.

BEST OF LUCK to you and let us all know how you are and what your treatment plan is. It's always nice to hear the rationale of other LLMDs for we have learned to open our ears/minds/and hearts to new ideas. It's a survival mechanism with this disease. I just wish that was contagous!

[b]

Post edited by: canucklymie, at: 02/02/2009 10:52

Post edited by: canucklymie, at: 02/02/2009 10:54

On the other hand I had Bart and did not experience frozen shoulder.

Secondly - I would RUN from any LLMd that even suggests steroids in pill form, inhaler and shots - it shows lack of knowledge, with all due respect.

Burrascano coined the term "steroid disaster" and it is a total disaster, you may never overcome it -they DESTROYED me and brought dormant viruses to life, which by the way can cause pain that you never want to experience heading straight to peripheral nerves causing pain you cannot imagine and can take years, if ever to go dormant again.

Burrascano also says about Bart/Blo's sx: BLO infection include CNS symptoms out of proportion to the other systemic symptoms.

Read this article at my site regarding the danger of steroids: http://www.truthaboutlymedisease.com/phpBB3/viewtopic.php? f=6&t=14

My advice, wait on the abx to work, whichever you choose. Becareful choosing the fluoroquinolones, they have an FDA black box warning and you should read this site, which may or may not be factual, it is still good to read all you can: http://www.fluoroquinolones.org/

Lastly, your shoulder may hurt a very long time or it may wax and wane. Another thing a doctor can do which is from the old days is "crank it" - yeah it hurts, but it will break it up, my sister had that done. Personally, I'd wait and eventually it should resolve in time.

Have you tried massage, acupuncture, FIR sauna's...there are many options.

Take steroids and reactivated viruses very seriously. Re-activated viruses cause leukemia, lymphoma and MS to name a few. I'd hate to see another person go through what I have as so many others have too, making the prognosis very unsure. Most make the mistake of steroids before they are aware they have lyme. If you know you have any bacterial infection, steroid should be listed on your chart as an allergy.

Post edited by: lymebytes, at: 02/02/2009 13:41

Tlizzy, Jaime's statement was not that of medical advice, but facts that have been shared with so very many, by LLMD's and from Personal Experience. As Group Leaders, we all have a disclaimer that clearly states that we are not MD's and are not offering medical advice...however when knowledge has been gathered and collected, and as serious as the use of steroids, it is important to share...that being said...no need to get snippy, next time either ask the poster to clarify - or send a PM to one of the leaders. Thanks...

Not only does steroids shut down the immune system, it causes the dormant bacteria to reactivate...active bacteria = active infection. And as for dealing with these effects later, some do not recoup. For some it is like starting over. Its a personal choice, but I dare to say, that I would bet (and I dont bet) that very few are willing to take the RISK of having to start over with their treatment. Progress has already taken so long...

Steroids is a last resort. Years ago, I had an allergic reaction to a med, and my body was COVERED in a rash...there was nothing else for the LLMD to do, but to give me a shot of prednisone. At the same time, they doubled all 3 of abx that I was on. I was a lucky one. And I believe in one of the late Doc D's papers, he even mentions that IF it must be done, it MUST be done with abx.

PCohan...

My mother too suffers from bone spurs in both shoulders. Not caused by Lyme, happens from repeated activity, if i understand correctly. She does need surgery, but the doc wants her to hang on until she has better control over her Lyme & Babs. Lyme loves injuries...scar tissue...BUT it can be done, but it has to be done right, and with the right abx. I would sit your LLMD down and find out why he is wanting you to take this route. And see if at some point you can revisit the possibility...

Take Care

Christine

Through this site, MD Junction members provide general information and personal experiences for educational purposes, and to provide a means of support & friendly opinions.

The information provided in this site, is not a substitute for medical or professional care, and you should not use the information in place of a visit, call consultation or the advice of your physician or other healthcare provider.

However, I believe that there is much to be said for personal experiences, and that there are a great many doctors who could really expand their knowledge in the medical field if they would learn to listen to their patients' personal experiences, and treat them as individuals on a case by case basis rather than lumping the majority into what their initial college textbook claimed was the definition or course of treatment at that time, and not furthering their education with the change of times and advancements in research.

Also, getting lucky with the use of steroids in Lyme by no means cancels out the severe dangers of it's use in the majority of Lyme cases as you can clearly see by the other posts offered up here, and by doing some research of your own.

Our members, Jaime1978 and Lymebytes are two prime examples though of how devestating & detrimental steroid use with Lyme ultimately can be, and with long-term repercussions.

There is medical research that supports good cause for avoiding steroid use with Lyme. Please see Jaime's post in Lyme Facts here:

http://www.mdjunction.com/forums/lyme-disease-support- forums/studies-research/324689-steroids-and-lyme-diseaes- disaster

In, Advance Topics in Lyme Disease, 15th Edition, Dr. Burrascano says on this subject,

"The severity of the clinical illness is directly proportional to the spirochete load, the duration of infection, and the presence of co-infections. These factors also are proportional to the intensity and duration of treatment needed for recovery. 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 intra-articular steroids."

"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."

You can read his entire article here: http://www.ilads.org/files/burrascano_0905.pdf

Certainly there may be circumstances where exceptions need to be made, as in Cmany's case, but she is also a good example of the extreme precautionary measures taken in such instances of steroid use in an attempt to abstain from causing possible & permanent, destructive damage.

While I am glad the use of steroids worked out for you, I feel that if anyone should be concerned about advice on this particular thread negatively impacting someone's wellbeing, and making a point to remind others to not heed it as medical advice, it should be in regards to anyone supporting the use of steroids with Lyme.

Differences in opinion are always welcome, but we like to refrain from putting it out there in debateful reciprocation or a counterproductive manner. Please consider this in the future.

I will say again, MD Junction is not liable or responsible for any advice, course of treatment, diagnosis or any other information you obtain through this site. You are ultimately responsible for your own course of action, and are expected to use common sense.

Similar medical advice disclaimers are posted throughout the site, and it is not necessary to pinpoint that in regards to Jaime or anyone else providing their personal experience & opinion on a subject in the manner it was done here. MD Junction is all about "people helping people", and members are expected to treat one another with common courtesy & respect.

That being said, and while we are on the subject of medical disclaimers, I would like to add:

IF YOU BELIEVE YOU HAVE A MEDICAL EMERGENCY, YOU SHOULD IMMEDIATELY CALL 911 OR YOUR PHYSICIAN. If you believe you have any other health problem, or if you have any questions regarding your health or a medical condition, you should promptly consult your physician or other healthcare provider.

Never disregard medical or professional advice, or delay seeking it, because of something you read on this site or a linked website.

Never rely on information on this website in place of seeking professional medical advice. You should also ask your physician or other healthcare provider to assist you in interpreting any information in this site or in the linked websites, or in applying the information to your individual case.

Medical information changes constantly. Therefore the information on this site or on the linked websites should not be considered current, complete or exhaustive, nor should you rely on such information to recommend a course of treatment for you or any other individual. Reliance on any information provided on this site or any linked websites is solely at your own risk.

pcohan, my own advice to you would be to avoid steroid usage at all costs unless it would prevent something lifethreatening, but that is my opinion. As you can see however, it is also the opinion of many others.

My best advice is to do your homework on the subject. Research, research, research, and absolutely get another opinion, and another, if that's what it takes. I think you will find that your LLMD and tlizzy's LLMDs' opinions on the safe use of steroids in Lyme are rare ones, and ones that should ultimately be reconsidered and approached with extreme caution.

If you trust & respect your current LLMD, then perhaps consider printing out a copy of Dr. Burascano's treatment guidelines and ask your LLMD to review them & discuss them with you. Here is the link to that once again:

http://www.ilads.org/files/burrascano_0905.pdf

However, if your LLMD still insists steroid use with Lyme is okay, I would urge you to consider pursuing a second opinion with an LLMD better familiarized with the importance of refraining from their use. Ultimately, it is your call though.

You should learn everything you can about Lyme Disease, and some of the most profound advice anyone here will give you, is to BE YOUR OWN BEST ADVOCATE.

Please do let us know how else we can help support you. MD Junction is all about providing helpful information & resources, encouragement, inspiration & support.

Welcome to our Lyme family-- and PLEASE consider PMing Jaime if you are interested in a list of alternate LLMDs in your area. She is usually behind the scenes, stuck in her inbox, finding doctors for Lymies.

(((BIG HUGS)))

Post edited by: beauty4ashes, at: 02/02/2009 17:13

On the other hand, I did use the spray when I had lyme and did not know any of this...Sad part they do help my sinus...But decided no yesterday so he gave me a spray without them...