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01/15/2009 12:28 PM

lyme and steroids!

jaime1978
jaime1978  
Posts: 2399
VIP Member
I'm an Advocate

I didn't write this, "borrowed" it from www.truthaboutlymedisease.com with the owners permission.

I had steroid injections in my spine, and it nearly killed me!

Steroid Disaster" is a term coined by the pioneer of Lyme Treatment, Dr. Burrascano (see link at bottom of page).

Corticosteroids supress the immune system, the last thing a Lyme patient needs is to lower immunity.

Can you imagine, your body trying hard to fight off the spirochete bacteria and suddenly and immunosuppressants is introduced, "freezing" your immune system, rendering it unable to battle, giving great advantage now to the Lyme bacteria to spread and go wherever it wants and it does!

Corticosteroids can last in the body for months, usually around 6 months.

With LD this gives many months for the bacteria to spread, possibly cause damage & according to Dr. Burrascano the prognosis can be much worse.

Many Lyme patients (such as myself) triggered LD with cortisone shots, pills, inhalers, etc. I can tell you, it is a nightmare I wouldn't wish on my worst enemy.

It is important to list on all medical charts and pharmacies that you have an allergy to corticosteroids.

If surgery is in your future or an unexpected ER visit, make it known without a doubt you do not want any corticosteroids due to "allergic reaction".

It is imperative to NEVER take corticosteroid for pain if you know you have a bacterial infection.

Some bacterial infections are so severe that a shot of cortisone could kill you, although that would be unlikely with Lyme, but rule of thumb, bacterial infections and immunosuppressants do not mix!

If you ever do any shots to relieve pain, tell the Md to leave out the steroid and use lidocaine or procaine only should be safe, ask your LLMD.

Many Md's mainstream Md's are shying away from corticosteroid use, I noticed this when I was searching for pain relief and 2 doctor's were extremely hesitant and then refused to give me corticosteroids of any kind.

I didn't know I had LD at the time and looking back, I was hell bent to get a cortisone shot, I was hurting!

I found the Md that would do it and basically I can only tell you the pain that followed I never knew existed.

Like a grenade had gone off internally and shrapnel flying, every part of me hurt, every tendon, muscle and nerve scalp to feet. I write this at 2 years after those shots were given to me.

I have a long, long way to go...if I ever recover. Scary and extremely painful is my world, so I warn you PLEASE don't risk corticosteroids.

Having had steroid injections before realizing I had LD, I consider myself lucky to be alive today, so much "exploded" in me, I am amazed as I sit and type this I am able to do so.

So many who have used corticosteroids wish they never had, but didn't know better, it has activated lyme, disseminated it and made it much harder to treat, not to mention again PAIN that you could not imagine!

The main thing always overlooked that is most important - corticosteroids release dormant viruses (we ALL have dormant viruses residing in our spine) especially if IV, trigger point injections or facet joint injections are done near the spine.

Mine were in the shoulder blade area. Viruses released as well and spread everywhere in my body 4 in all, they can make pain much worse and mixed w/Ld a nightmare.

We have all been exposed to viruses in our lifetime through saliva, contact with others infected or even airborne, for instance Chicken Pox reactivated can be something entirely different, shingles, shingles can be localized or systemic (internally and body wide).

Mono from the Epstein Barr virus reactivated can cause pain and neuropathy just as an example. You have dormant viruses, it is fact.

Once released they can be dangerous. If you have had corticosteroids at all, especially if you have pain that is not manageable, insist upon viral testing.

Know how to read a viral report, if either the IgG or IgM show out range you ARE infected w/viruses, many doctor's only look at the IgM (meaning active - IgG meaning past exposure) and may be wrong.

There is much argument in the medical community as to the meaning of IgG...IgM is clearly active, IgG positive tests, the line blurs as to whethr you are actively infected or not.

An ID MD at Standford explains that doctor's often are mistaken in believing that the IgM needs to be positive to prove active infections.

More information is here under our viral link. Also what viruses to test for: viewtopic.php?f=6&t=55

An extremely high profile LLMD (lyme literate Md) who worked with HIV patients in the 80's has told me personally that "the IgM must be positive for active infection". I must admit both Md's make valid points.

Dr. Burrascano makes it clear in his treatment guidelines that steroid treatment is detrimental, these are excerpts from his guidelines:

"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.

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, immunosuppressants medications, and severe intercurrent illnesses.

This is why steroids and other immunosuppressants medications are absolutely contraindicated in Lyme.

This also includes intra-articular steroids." (definiton of intra-articular: situated within, occurring within)

See page 12 paragraph 3 for this quote in Burrascano's treatment guidelines.

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

An easy explanation. Your immune system are the "soldiers" of your body constantly standing by to attack any foreign invader.

When an immunosuppressant is used, it is like killing off or knocking out most of your "army", now your body is open to all foreign invasion and while your immune system is knocked out, those invaders can go anywhere, your heart, liver, brain - everywhere.

Steroids to a lyme patient are like kryptonite to Superman.

Dr. Burrascano listed the ways to wellness - rules to live by at the Hope to Heal Conference in '06 as folllows:

General Lifestyle for CLD (Chronic Lyme Disease)

• Do NOT overdo

• Rest is enforced

• No caffeine - impacts sleep even at small amounts - sleep is CRITICAL

• Balance, balance

• No alcohol - more toxicity

• Stay hydrated - drink lots of water

• No smoking - one cigarette every 3-4 months can impact your recovery

• Vitamins do NOT feed spirochetes

• Exercise is critical

• No steroids

PLEASE NEVER EVER USE STEROIDS WITH LYME!

Links of interest:

http://www.lymenet.de/literatur/steroids.htm

edited: used quotes so it's larger to read & broke up really long paragraphs for severely neuro lyme patients like me/others. good info here!

bettyg, iowa leader Smile Kissing

Post edited by: Bettyg, at: 07/20/2010 12:20 AM

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02/13/2009 03:05 PM
Canuck
Canuck  
Posts: 1674
Senior Member

I SECOND that and have posted in other threads how steroids ruined me and I could never fully recover from the damage they did to let the little buggers run/drill rampant in my body. NO steroids. If emergent and you and your doc agree, then, well who are we to say. I still say NO

02/13/2009 04:11 PM
jaime1978
jaime1978  
Posts: 2399
VIP Member
I'm an Advocate

I agree, Bruscanno even says that treatment after steroids use is detrimental to treatment...not his exact words I dont think, but something along those lines.

of cousre if it comes to life and death, it's a personal choice...I suppose if I were dying and it were the ONLY option, I may consider it.

I just know TOOOOO many people whose lives have been ruined by steroids. I just read an article, gonna have to try to find it, where for so long docs have thought them a wonder drug, but they are finding different.....will have to search tomorrow...gotta get little ones in bed Smile


07/19/2009 10:47 AM
katie1217
katie1217Posts: 22
Member

Hi there,

I am so confused as I type this. I went to the ER this am with acute asthma and bronchitis. I have the hardest time breathing for the past 3 days. The ER dr. told me it was ok to take steroids with lymes as long as its a short amount of time. Mine would be 1 week. I am afraid to take them but not being able to breathe right isnt easy either. I am on (non-steriod) inhaler and 2 abx. One for lymes and one for bronchitis. Sny advice. I have a LLMD and I am sure she will say to hold off. Has anyone ever been in this situation? Thanks


08/03/2009 02:49 AM
fr1endly2
fr1endly2  
Posts: 38
Member

BEING very new to this forum....and the first place my doctor

sent me for my BODY act es was to a RHUMI that threw me on

steroids will....tts a fact i have been worse since. I dont want to o go back ever to her as she told me over and over my pain is not the LYME....bursitis..carpul tunneil...sorry im not buying it.

I love this forum and have alot to learn


08/03/2009 04:37 AM
toothfairy55
toothfairy55  
Posts: 3856
Senior Member

Steroids are a BIG NO NO Get off them. They weaken your immune system and allow the bacteria to party. I also saw a Rheumatolisit. My original DX was bursitis, fibro , osteoarthritis. I had surgery on my knee in feb09 and the orthopedic said for my age the arthritis was good. The only good thing Cortisone did was make me pop positive for Lyme. Now I wont touch the stuff.

08/03/2009 04:44 AM
katie1217
katie1217Posts: 22
Member

Thanks Carole. I wouldn't take them. Not even the advair. I finally got better after 7 days of a "very difficult" week of wheezing. Thanks again.Smile

07/20/2010 12:06 AM
Bettyg
 
Posts: 32295
VIP Member
I'm an Advocate

Cortisone shots are taboo!!!!

http://flash.lymenet.org/ubb/ultimatebb.php/topic/3/25084

Keebler

Honored Contributor (10K+ posts)

Member # 12673

posted 07-17-2010 04:11 PM

-

Good point. There are many who have been damaged by steroids. There are many past threads, too, if anyone wants to read more.

Even topical steroid creams are not to be used as they are absorbed into the body. Steroid nasal sprays are to be avoided, too. A NETI POT can take their place.

[use goodsearch.com and chose lymediseaseassociation as your charity of choice. betty showed this vs. google!]

We all hope that everyone new to lyme information will read Dr. Burrascano's guidelines - in that, he addresses steroids.

Two exceptions:

• if an emergency and no other method would have the same effect in order to save a life - or vision, etc. (but then WITH abx as detailed below) . . . and

the use of LOW-dose Hydrocortisone (Cortef) for those in whom the "adaptogens" (Eleuthero, Ashwagandha, Rhodiola) or B-5 are not enough adrenal support.

All those terms can also be searched in the archives as there are also many threads about all that.

[-- about asthma inhalers that contain steroids: consult your LLMD before making ANY changes or starting anything new.]

==========================

http://flash.lymenet.org/scripts/ultimatebb.cgi/ubb/search/ search_forum/3

LymeNet Archives

===========================

http://www.lymenet.de/literatur/steroids.htm

Antibiotics and Steroids - by John Drulle, M.D.

Excerpts:

. . . We have seen literally dozens of patients with Lyme who were initially treated with steroids who reported a dramatic worsening rather than improvement as would be expected. Dr. Joseph Burrascano has coined the expression, ' Steroid Disasters, ' to describe these patients. . . .

. . . Corticosteroids can last in the body for months, usually around 6 months. In many bacterial infections such as LD, damage can be done. . . .

======================

http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

Dr. Burrascano's Treatment Guidelines (2008)

Excerpts:

From page 4:

. . . 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. . . .

From page 12:

. . . 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. . . .

- Posts: 15390 | From Tranquil Tree House in my dreams | Registered: Jul 2007


07/20/2010 12:22 AM
Bettyg
 
Posts: 32295
VIP Member
I'm an Advocate

hi jaime, i broke up your 1st post here so we severely neuro lyme patients could then comprehend and read it; also put it in quotes making it larger print for low vision folks like me. Smile fyi Kissing hugs

bettyg, iowa leader Silly


08/27/2010 11:23 PM
Bettyg
 
Posts: 32295
VIP Member
I'm an Advocate

Spinal InjectionsProcedure

Types of Spinal Injections

Complications Spinal injections are used in two ways.

First, they can be performed to diagnose the source of back or neck pain (diagnostic).

Second, spinal injections are used as a treatment to relieve pain (therapeutic).

Most spinal injections are performed as one part of a more comprehensive treatment program.

Simultaneous treatment nearly always includes an exercise program to improve or maintain spinal mobility (stretching exercises) and stability (strengthening exercises).

Procedure

Spinal injections are performed under X-ray guidance, called fluoroscopy. This confirms correct placement of the medication and improves safety.

To do this, a liquid contrast (dye) is injected before the medication. If this contrast does not flow in the correct location, the needle is repositioned and additional dye is injected until the correct flow is obtained.

The medication is not injected until the correct contrast flow pattern is achieved.

Types of Spinal Injections

Epidural Injections

Epidural injections are used to treat pain that starts in the spine and radiates to an arm or leg. Arm or leg pain often occurs when a nerve is inflamed or compressed ("pinched nerve"Wink.

Epidural injection in the cervical spine.

Epidural injections involve injecting an anesthetic and an anti-inflammatory medication, such as a steroid (cortisone), near the affected nerve.

This reduces the inflammation and lessens or resolves the pain. This type of epidural injection is a therapeutic one.

For diagnostic purposes, an epidural spinal injection can be done at a very specific, isolated nerve to determine if that particular nerve is the source of pain.

For diagnostic purposes, only an anesthetic is injected.

The immediate response to the injection is closely monitored.

If the pain is completely or nearly completely relieved, then that specific nerve is the primary cause of the pain symptoms.

If there is little pain relief, then another source of pain exists.

Facet Joint Injections

Facet joint injection in the lumbar spine. Facet joint injections can also be done for both diagnostic and therapeutic reasons.

These types of injections are often used when pain is caused by degenerative/arthritic conditions or injury.

They are used to treat neck, middle back, or low back pain.

The pain does not have to be exclusively limited to the midline spine, as these problems can cause pain to radiate into the shoulders, buttocks, or upper legs.

Facet joint injection in the cervical spine. For diagnostic purposes, facet joints can be injected in two ways:

injecting anesthetic directly into the joint or anesthetizing the nerves carrying the pain signals away from the joint (medial branches of the nerve).

If the majority of pain is relieved with anesthetic into the joint, then a therapeutic injection of a steroid may provide lasting neck or low back pain relief.

If anesthetic injections indicate that the nerve is the source of pain, the next step is to block the pain signals more permanently.

This is done with radiofrequency ablation, or damaging the nerves that supply the joint with a "burning" technique.

Sacroiliac Joint Injections

Sacroiliac joint injection in the pelvis.

Sacroiliac joint (SI joint) injections are similar to facet joint injections in many ways. The SI joints are located between the sacrum and ilium (pelvic) bones.

Problems in the SI joints have been shown to cause pain in the low back, buttock, and leg.

Typically, one joint is painful and causes pain on one side of the lower body.

It is less common for both SI joints to be painful at the same time.

This joint can also be injected for both diagnostic and therapeutic purposes.

Anesthetizing the SI joint by injection under X-ray guidance is considered the gold standard for diagnosing SI joint pain.

A diagnostic injection of the sacroiliac joint with anesthetic should markedly diminish the amount of pain in a specific location of the low back, buttock, or upper leg.

A therapeutic injection will typically include a steroid medication, with the goal of providing longer pain relief.

Provocation Diskography

Provocation diskography is a type of spine injection done only for diagnosis of pain. It does not have any pain relieving effect.

In fact, it is designed to try to reproduce a person's exact or typical pain.

This is to find the source of longstanding back pain that does not improve with comprehensive, conservative treatment.

It can severely aggravate the existing back pain.

Diskography is performed much less commonly than the other types of spinal injections reviewed above.

It is often used only if surgical treatment of low back pain is being considered.

The information gained from diskography can assist in planning the surgery.

Diskography involves stimulating and "pressurizing" an intervertebral disk by injecting a liquid into the jelly-like center (nucleus pulposus) of the disk.

More than one disk is injected in order to distinguish a problem disk from one without symptoms.

Criteria are used to identify a painful disk by provocation discography, including the type and location of pain and the appearance of the disk on an X-ray after the procedure.

Complications

Spinal injection procedures are generally safe procedures. If complications occur, they are usually mild and self-limited.

The risks of spinal injections include, but are not limited to:

•Bleeding

•Infection

•Nerve injury

•Arachnoiditis

•Paralysis

•Avascular necrosis

•Spinal headache

•Muscle weakness

•Increased pain

Common side effects from steroids include:

•Facial flushing

•Increased appetite

•Menstrual irregularities

•Nausea

•Diarrhea

•Increased blood sugar

•Arthralgias

Some people are not good candidates for spinal injections.

These include people with:

Active systemic infection

•Skin infection at the site of needle puncture

•Bleeding disorder or anticoagulation

•Uncontrolled high blood pressure or diabetes

•Unstable angina or congestive heart failure

•Allergy to contrast, anesthetics, or steroids

Last reviewed and updated: November 2009

http://orthoinfo.aaos.org/topic.cfm?topic=A00560

GREAT GRAPHICS THERE; GO VIEW THEM PLEASE! Smile

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