posted
I realize they suppress immune and infections run rampant...
what else? or is that enough to say about it?
Can they cause permanent damage to nerves with neurolyme?
3 years ago I was given IV steroids in three doses with the sudden onset of what I now know was neurolyme.
Is it possible that steroids dmaged my nervous sytem on top of neurolyme effects?
or what?
Onset was unspeakable pain followed by paralysis waistdown; ironically the numbness eliminated the pain...
long journey since but have recovered quite a bit of that part of things--but not all
So I keep wondering about those steroids.
-------------------- Not everything in life that can be counted counts and not every thing that counts can be counted...Albert Einstein Posts: 208 | From Northeast | Registered: Aug 2010
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Keebler
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posted
- For a life-threatening situation, steroids can sometimes save a life, or lungs, or vision. However, if a person has an undiagnosed, untreated or undertreated infection . . . there is increased risk UNLESS infection is also being treated / monitored by a doctor who really knows what they are doing.
It is possible to receive steroids and do okay -- IF infection is also being addressed. Still, this would be for emergency situations for which there would be no other options.
For most inflammation, there are other ways to address that.
You are very lucky. Such IV steroids proved fatal to a boy - and only after his death, was it determined that he had neurolyme. And his has not the only fatal case.
Steroids can kill a person with lyme (especially if untreated or under treated). Steroids can cause nerve and immune damage, yes. It can take 6 months to a year for some damage to clear - or it may be permanent. And some are more fortunate. With all things lyme, every patient has a different experience but it is seldom good beyond an initial improvement that then goes haywire. -
[ 06-16-2014, 08:27 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses
16th edition, Copyright October, 2008
Joseph J. Burrascano
Excerpts:
P. 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. . . .
Page 20:
. . . and absolutely no immunosuppressants, even local doses of steroids (intra-articular injections, for example). . . .
. . . "Steroid Disaster" is a term coined by the pioneer of Lyme Treatment . . .
Corticosteroids are immune suppressants, 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 .
Corticosteroids can last in the body for months, usually around 6 months. In many bacterial infections such as LD, damage can be done.
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 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! . . .
. . . 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."
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 "soldiers", 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.
- full article at link above.
=========================
[poster's note below]
Low Dose Cortef to help adrenal repair:
However, temporary use of very LOW (sub-clinical) dose hydrocortisone (Cortef) has been used as the last resort for lyme patients close to adrenal failure.
The adrenals (and the entire endocrine system) really takes a hit with lyme. Adrenal failure can become fatal so, if nothing else is working, Cortef can be a life-saver - or prevent a patient from reaching a critical stage.
Under the care of a LLMD, this can give the adrenals enough of a rest in order to start healing. However, usually adrenal support measures known as adaptogens are first tried. For most, adaptogen support is enough (along with good self-care).
Those include Eleutherococcus senticosus, Ashwagandha, Cordyceps or Rhodiola (starting slowing with a low dose as that can be too stimulating for some patients -- and too much stimulation is damaging to adrenals). -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
yow Keebler... it pretty much sums up that I escaped with my life.
It was another year before I knew I had lyme from an electro dermal screening.
I escaped further harm from the nice illiterate nuerologist because I had since been afraid or at least disrespected him and stopped going.
I am convinced that my further inquiries as to helps for the "transverse myelitis" would have yielded further steroids.
Just cause he didn't know what it was or what to do.
I take an herbal adrenal tincture including some of these ingredients you cited and it has helped a lot with fatigue.
LLND has been very cautious...startng low and slow with some things and gradually increasing or adding...
but the more I know the better advocate I am for myself.
-------------------- Not everything in life that can be counted counts and not every thing that counts can be counted...Albert Einstein Posts: 208 | From Northeast | Registered: Aug 2010
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posted
ihad alow dose pill for 6 days to jumpstart, test was really really low. and a cream for a few months. afteer rest of fam gets tested and treated we'll see if my numbers (see below) go by by after a yr with LLMD , hoping to be back before fall, meantime wifey and kids first. so this nasal spray is a natural alternative to roids? Keebler?
-------------------- NWOODS WI/ bit May08 diagnosed Jul08 Lyme March 09 symptoms return Ehrlichiosis pos.no Lyme? Feb 11 CD57=26 Mycoplasma 343 Babesia 55.2 HHV6 5.8 WB CDC POSITIVE 31++ 39+ 41++ 58++ 66+ 83+ WB IGG POSITIVE 31++ 34 IND 39 IND 41++ 58++ Posts: 55 | From the Lyme Mine | Registered: Dec 2010
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posted
My husband had to be on steroids in 2010 because Retroperitoneal Fibrosis was blocking off his ureter. It was a life or death issue.
He was also on steroids and cellcept (Ugh!the regular Dr's seem to think they know more than our immune systems)again for skin ulcers right before his Lyme diagnosis in Jan. We cannot go back in time. We can only move forward and pray that he is able to heal from Lyme.
-------------------- aperture Posts: 551 | From Louisville, KY | Registered: Nov 2011
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Keebler
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The herb, STINGING NETTLE, is also excellent for sinus issues.
Foods that often make sinus trouble: gluten (in wheat, spelt, rye, barley, kamut); dairy; corn; soy.
Google: Hidden+Sources+of+Gluten -
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randibear
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posted
What happens if you absolutely must have steroids? My sister has ra and I'm still concerned I mite have temporal arteritis. If it's life or death they could kill you anyway just trying to treat ya.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Keebler
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posted
- In the articles above, it details emergency use.
For those with TBD, a LLMD should always be on the case.
As for "if it's life or death" - is it really? Really? Not saying the situation is not "life or death" but the condition that steroids are the only way to treat. Not necessarily, I'm saying.
Which doctor says so? (Are they LL?)
What OTHER options are they considering?
So often, a doctor will say steroids are must, but they don't really consider safer options.
For those with TBD, a LLMD should always be on the case. There are specific ways to deal with emergency uses, noted in links above.
For on-going use, steroids are used primarily for to depress the immune system and to reduce inflammation.
As for depressing what most doctors think is an over active immune system, or an autoimmune disease, very often these are infection-based.
TREAT THE INFECTION. Adequately. For as long as it takes with as many methods as it takes. ILADS-based protocol.
Address other issues such as heavy metals, parasites, etc. Gluten problems, etc.
And where immune therapy is needed, it MUST be specific and not just depress the whole immune system.
Low Dose Naltrexone can help MODULATE the immune system. So can various Medical Mushrooms, etc.
As for swelling, see next post for anti-inflammatories.
Excerpt from Burrascano:
. . . If immunosuppressive therapy is absolutely necessary, then potent antibiotic treatment should begin at least 48 hours prior to the immunosuppressants. . . .
==========================================
For anyone with chronic multi-system illness who has been prescribed steroids on-going to "manage" their illness, it would be good to see this:
(What ILADS is) . . . WHY you need an ILADS-educated, Lyme Literate Doctor - starting with assessment / evaluation.
Remember that lyme "flips" the immune system. Lyme can evade, change and do so many other things that most doctors have no clue about . . .
The Th1 part shifts as does the Th2 part -- the part that needs energizing might be in overdrive -- or dismantled, so to speak. To push or supress requires a LL expert to get it right. -
[ 06-16-2014, 08:33 PM: Message edited by: Keebler ]
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Keebler
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Topic: Immune Modulators -
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Keebler
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posted
- It is not so rare that someone be diagnosed with "MS" or other neurological symptoms and are told to take steroids. When, all the while, their diet may be the cause: -----------
Topic: NATURAL SLEEP & ADRENAL SUPPORT -
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randibear
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posted
my sister takes methotrexate and has iv infusions once a month. can't remember all the stuff she's on. but i do know they have been giving her massive steroids since they told her the ra is attacked her major joints now.
she has three years left to work and even then won't make enough in social security to even pay her house payment.
i worry about her a lot.
you feel so helpless when you're fighting the medical community, knowing that what they are doing is possibly wrong and there's nobody to listen to you.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Keebler
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posted
- Randi,
I know. It's so hard but, often, we just have to give them an article or book where a professional has outlined some of the important points that apply to our loved one. Then, it's up to them to explore.
If she considers this, since it incorporates Minocycline, they don't say this but I've found it on my own: Liver support must be used to help the ears better tolerate minocycline. How, why:
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links -
Posts: 48021 | From Tree House | Registered: Jul 2007
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I never got antibiotics and was given steroids at least five different times. They left me handicapped, in a wheelchair � not able to lift my legs, stiff, with spasms. After eight years I�ve been on antibiotic pills and I.V. for two.
Can anything reverse the steriod damage?
Stephen�s response:
One of the truly great tragedies of �modern� medicine is the improper use of steroids. They can destroy the bone/cartilage in the body and leave a person severely debilitated, as you well know. Restoration is difficult.
You can help your condition but it will take a long time and you will have to be extremely focused and persistent. How much you can correct, I can�t predict.
Here is what I would do to begin with:
Herbs:
Drynaria (1st Chinese herbs.com) [Use coupon code "LYME" at checkout for 10% off.]
Teasel root tincture (Woodland Essence)
Panax notoginseng tincture (Woodland Essence)
Pine pollen tincture (Woodland Essence) Nettle root: 1200 mg daily
Japanese knotweed (Green Dragon Botanicals) 3 capsules 3x daily
Buy the three tinctures from Woodland Essence and combine together (you can pour them back in the bottles, just label them, or you can ask Woodland Essence to do it for you and put them in a 4 ounce bottle). Take 1 tsp 3x daily for at least a year.
Buy powdered drynaria, take 1 TBS in a.m. in juice and 1 TBS in evening before bed (in juice) for a year.
This formulation would also be useful long term:
Seven Forests Drynaria 12.
Supplements:
Quercetin 1500 mg daily on empty stomach in 3 divided doses
Egcg (green tea extract, 1500 mg daily on an empty stomach in 3 divided doses)
Cal/mag supplement, effervescent (Thorne Research, dosage as on label)
Manganese, 20 mg daily Vitamin K, 1 mg daily
Vitamin B complex 2 tablets daily Boron, 2 mg daily Vitamin D3, 400 IU daily
Everything should be taken long term. It will take awhile. You might also consider using ashwagandha and rhodiola long term as well, they will help.
Stephen (end excerpted segment)
-----------------------------
I'm adding this set as Medical Mushrooms can really help support immune function:
[ 04-25-2013, 12:57 PM: Message edited by: Keebler ]
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desertwind
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posted
I was on 4 months of a very strong steroid a few years ago. Took close to 1.5 years to crawl out of that hell hole.
Two weeks ago had IV during a surgical procedure. Flared things up again but keep in mind that steroids can have the same effect on yeast as and parasites as it does Lyme - or any other infection for that matter.
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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Keebler
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posted
- DesertWind, so that others can see more detail regarding your experience, here's that link to your thread:
Topic: Minor surgery and steriods - complications from steroids that were not supposed to be administered.
posted by desertwind - 19 April, 2013 -
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Catgirl
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posted
Deerose, hang in there. I think most of us have been there with steroids. I never knew I had lyme and a lot of prednesone.
Keebler, you're a gem. We are so fortunate to have you here!
Keeb, or anyone else familiar with this, do you happen to know anything about DHEA or pregnenolone? My doc says a little bit is okay, but I can't seem to find any info as to whether they do the same thing to the body as corticosteriods do?
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Judie
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posted
I got permanent eye damage from them and candida problems along with severe gut dysbiosis that went undiagnosed for 2 years.
Steroids also severely disrupted my endocrine system (no period for 6 months after stopping them and then needed treatment for that).
It was hydocortisone cream that caused the eye problems and the pills/injections that caused the other stuff.
I hate steroid
"Just cause he didn't know what it was or what to do."
I think that's the problem. Doctors throw steroids at you when they don't know what to do with you.
Even my ND wanted me to take low-dose steroids at one time. I refused (an acupuncturist warned me not to take them because it GAVE her arthritus, she was using the cream for psoriasis).
Posts: 2839 | From California | Registered: Jul 2012
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Keebler
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posted
- Catgirl,
Yes, DHEA or pregnenolone are fine as adrenal support - but not necessarily for everyone. Just follow your LL doctor's advice on dosage for YOUR body. Lots of good detail here:
Topic: NATURAL SLEEP & ADRENAL SUPPORT -
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Judie
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posted
I tried DHEA awhile back. It felt like I was on steroids (very racy), but definitely none of the nasty side effects as steroids for me.
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Catgirl
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posted
Thanks Keebler (and Judie). Thank you for the link too. :) I take adrenal supplements, but they weren't working without the pregnenolone. My preg was almost zero.
I recently got a blood test and they both moved up (normal range) --feeling better. I found my dose per energy testing (it worked beautifully).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Keebler
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posted
- Judie,
Yeah, DHEA was too stimulating for me, too. The suggested dose for my body was just too high. I cut that in half. The brand could also make some difference.
Catgirl,
Yes, the nutritional supplement, pregnenolone, can be very helpful in many ways. Just be sure about the dose for that as it also requires a bit of calculation. -
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Keebler
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STEROID USE CAN LEAD TO LONG-TERM TREATMENT FAILURE FOR LYME DISEASE PATIENTS
Several studies have documented the consequences steroids pose to patients with Lyme disease.
Most recently, researchers from Massachusetts Eye and Ear and Harvard Medical School published a retrospective study which described an "association between corticosteroid use in acute LDFP [Lyme disease-associated facial palsy] and worse long-term facial function outcomes." [1]
by Daniel J. Cameron, MD MPH - 09/13/2016
[Read, or download full article] -
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Keebler
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BIOLOGICS (often prescribed for various "autoimmune" issues - which are often not autoimmune for those with ignored lyme / other TBD (tick borne disease)
well, BIOLOGICS can also have devastating effects for those with lyme, other TBD or other chronic stealth infections - due to their immune system suppression, etc.
. . . and how they can adversely affect immune function, especially for those with neuro / brain / heart inflammation as lyme often causes. Aluminum is especially dangerous.
Rather than suppress immune function as Steroids and Biologics do, many of the ingredients in vaccines can send inflammation to the moon . . . and trigger immune function overdrive in those who deal with lyme and such infections of the nervous systems. -
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