desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
I am no stranger to the dangers of steriods. I had 4 months of Dexamethasone a few years ago after neurosurgery and it collapsed me into a shell of my former self.
I have worked so very hard over the past 1.5 years with a great LLMD to get my life back - and I was doing really good till last week.
I had to have a laporoscopy (cleared by LLMD) and surgeon and o.r. staff were informed NO STERIODS!!!!!
Well, I find out they DID give me IV steriods during the procedure!!!!! Dexamethasone no less. ONly saving grace was I also had an IV of Cipro going at the same time.
I woke up with a bad red dot type rash under my skin all over my neck....Anyway, I am back to sick, sick, sick again and feel like all that hard work over the past 1.5 years is shot to hell.
I feel so deflated like I do not have the energy to go at this again...Yeast and parasite feel flared as well. Everything is flared.
Just wanted to get the message out that even when you demand NO STERIODS beware you could still recieve them.
Next time I will tell them I am allergic...
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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Sammi
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Member # 110
posted
desertwind, I am so sorry this happened to you. It is terrible.
Since you had IV Cipro simultaneously, maybe this worsening will be short-lived. I hope so.
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I'm sorry to hear this. And, sadly (but important to know) steroids (&/or their effects) can last in the body for six months.
I will check for that link but it will take me a while.
I hope your LLMD knows about the mistake and that you will be covered with special care for at least the next six month to counter all this. -
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
. . . Corticosteroids can last in the body for months, usually around 6 months. In many bacterial infections such as LD, damage can be done. . . .
--------------
I am certain this excerpt is from this article as this is from my file notes.
I could not find where it is here, though. My eyes do spasm and I may be missing it. However, what is now at that site appears to a very much shortened piece of the full orginal article.
My eyes can't took further into this now, though. I am now officially now "toasted" and better rest. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I know this detail can be a kick in the pants. Still, it's important detail so that at least whatever can be done now will not be overlooked.
Hope you find good help with your LL doctor.
Medical Mushrooms are very helpful for immune support. There is also LDN (Low Dose Naltrexone) . . . I hope your LL doctor has some suggestions for full on targeting and support.
I wonder if there is a particular method to help clear it from your body? A LL ND may know. Some integrative LLMDs may, too. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I hope you called the doctor and registered a complaint to the nth degree!!!
and to the hospital as well!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Jane2904
Frequent Contributor (1K+ posts)
Member # 15917
posted
So sorry to hear all you are going through.
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
So sorry to hear this.
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- The complaint might best registered with the offical patient advocate for the hospital or clinic. Go to the top.
If they say they had no other choice you could point out that IV magnesium is an excellent choice to help reduce swelling / inflammation instead. -
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desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
Thank you all so much for your feedback and support and link re: steriods. I did not know it stays in your system for that long...
I actually just got back from seeing my LLMD and did report this to him. His response was "well they may as well have just given you lyme and babesia!". He did not think we were starting from the ground up but that I did need to get back on high dose full time again.
It took me close to a year to recover from my 4 month ordeal with roids - but I actually needed them at that time as I had severe brain inflammation. This time around it was a matter of the high and holy know it all MD's not listening to me or my LLMD's specific instructions.
I may very well consider filing a complaint. Thanks again...DW
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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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)
[Stinging] 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)
-----------------------------
The above set is very detailed. Other thoughts that come to me (though I'd not mix and match with above unless you have a LL ND or LL herbalist to guide you).
I'm adding this set as Medical Mushrooms can really help support immune function:
How to Find a LL ND (naturopathic doctor who is trained in medical herbal approaches) link to follow. -
[ 04-25-2013, 02:46 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
This is exactly why I don't want to have part of colon taken out. I'd rather risk the diverticulitis than go into a hospital and have major surgery
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
And no wonder that you now have candida, desertwind!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Randibear,
This is not about just risking whether a certain contition that could cost you your life will get worse of not.
If surgery is required to save a life, we all just do the best we can to make sure all the bases are covered.
Just because one doctor (or, more precisely, a whole team of doctors, likely) did not honor the patient's wishes in one case - or many - does not mean they may not for you.
But it would take a concerted communication effort with your LLMD, etc. In ADVANCE.
But, mostly . . . when we are fully aware of certain conditions for which we can do much about ourselves or with other doctors who may be thinking outside of the box, some surgeries may be avoided.
If possible, great. If not, never risk your life if it ever comes to that. Colon issues can be resolved with comprehensive nutritional, diet and life-style changes - sometimes. Still, if not, a diseased colon can cause life threatening situations.
Steroids would be the least of concerns at that time. But, now is the time to figure out exactly who would be on your team for that kind of medical communication if the need ever arises -
- while still addressing the concerns as proactively on your own &/or with a LL ND, etc. for all the support methods that most regular doctors do not consider. Even the worst cases can often be turned around.
Another advantange to having a LL ND - other than how that could help avoid worsening of the colon - is that if you ever do need to be in hospital, the LL ND could offer extremely valuable advice all around that. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- To go along with some links above.
While it's great we can read and study from good sources where we find them via the internet and if we are on our own to figure things out, however . . .
when considering herbal / nutritional / adjunct methods:
if at all possible - because each person & each case is different - it's best to consult with an ILADS-educated LL ND (lyme literate naturopathic doctor) (or similar) who has completed four years of post-graduate medical education in the field of herbal and nutritional medicine -
- and someone who is current with ILADS' research & presentations, past and present, and has completed the ILADS Physician Training Program (see: www.ilads.org )
Many LL NDs incorporate antibiotics (depending upon the licensing laws in their state). Some LLMDs and LL NDs have good working relationships.
When possible, it's great to have both a LLMD and LL ND and even better when they have a long-standing professional relationship.
Integrative / Holistic M.D., etc. (Be aware that those in this category can have various levels of formal herbal &/or nutritional education, perhaps even just a short course. Do ask first.)
Links to many articles and books by holistic-minded LL doctors of various degrees who all have this basic approach in common:
Understanding of the importance of addressing the infection(s) fully head-on with specific measures from all corners of medicine;
knowing which supplements have direct impact, which are only support and which are both.
You can compare and contrast many approaches.
BASIC HERBAL EDUCATIONAL & SAFETY links,
BODY WORK links with safety tailored to lyme patients,
LOW HEAT INFRARED SAUNA detail,
BIONIC 880 (& PE-1) links, and
RIFE links. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
I know I tell any doctor that I am highly allergic to steroids. One asked me what happened and I said it totally crippled me, which it did. I had the epidural steroids in my spine and neck before I knew I had lyme. I
I was willing to do anything back them to get rid of the pain since if they couldn't find it after 5 years, this looked like my option.
This would probably not help mistakes being made in your case. Doctors are over worked and in a hurry and you become just a number to them. Just my 2 cents. Feel better soon.
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Frankly, it sounds like you have the basis of a law suit here. I don't know if it is worth the agita or not, but this is outrageous. And probably all too common. And what recourse do we have to make sure this doesn't happen when we are "out?" Arghhh!
Posts: 3771 | From around | Registered: Mar 2008
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I wouldn't expect they would give steroids for a Laporoscopy.
May your LLMD turn things around.
Posts: 120 | From MA | Registered: May 2010
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gmb
Unregistered
posted
Thanks for posting this thread. I had a lapro hernia repair done last Friday. And I was very addament with my surgeon, pre-op nurse, and anesthesiologist that I cannot take any steroids due to Lyme and Babesia complications.
desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
Thanks for bringing this post back up and the additional info.
My LLMD thinks that the roids hurt my candida and parasites more then Lyme/co.s. Prior to the surgery I was off abx.s and doing quite well.
Had a talk with my Dr. and he showed me his written instructions for no steroids in my chart. Ultimately he is responsible and should have over seen this. He has been in communication with my LLMD about what happened. I don't know....He truly seems sorry for what happened. I have known him for a long time and he has helped me so much over the years. But yes, a big blunder.
IV steriod was given post op in recovery by a nurse - I was out of it and had no idea what they were given me. Suppose to help w/post op swelling since he vaporized alot of endo. Somebody needs to pay attention.....
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- So sorry for what has happened.
There are enough examples now of magesium IV in hospital that they should have considered that.
This is just a start to detail but wonder if some of these might be directed to the person who made the bad choice so that at least next time, everyone knows there are safer options than steroids.
Your doctor's orders were overlooked. That happens a lot in hospitals. While he can't undo the damage, I wonder if he might do something to ensure this does not happen again?
And, you should get some compensation, of course as their mistake is very costly to you in many ways.
I'm not a doctor, of course. And I don't know all the options to reduce inflammation but this is a good place to begin. Things MUST change.
Topic: Magnesium (and in the ER, hospital, etc) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- And I just want to share my dream so that we can stop the damage that can happen behind hospital doors.
I wish naturopathic doctors were allowed on all hospital boards and that MDs and NDs were free to work in tandem. This happens in a few hospitals but mostly in the cancer centers for some immune support and pain management.
I think we need to explore the full range of options and the MD world, the hospital world is just not doing that.
[Of course, for those with lyme both MDs and NDs would be fully LL, in my dreams, too. Actually, even for everyone, all doctors being LL at least miminally, would a good thing. This could avoid so much wasted time and so much pain.]
I would love to see an entirely different system. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
We have the same dream.
I've made more progress in 4 months with a wonderful ND, than in 11 years with 32 different MDs.
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