Topic: Those who took Steroids, I need your Help ! Doing so Bad ! Trying to get off
lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
Live and Learn they say. Well I got that and more.
Kicking myself now again. So, I tried the Steroids for the Encephalitis I get so frequently to see if I could go full dose on Mepron/Artiminisin/Z-max. I made it 8 days without any probelms, then all hell broke lose.
I realized, it can't be inflammation, but perhaps the Prednisone or another bad Brain Herx or both.
My CNS has been going crazy and I'm down to 30mg on the Prednisone from 80mg. Trying to taper fast, but can't stop cold turkey, so I'm kinda stuck.
My Babesia is Flaring like crazy with Severe shortness of breath, chest pains, anxiety from hell. So bad, I went to ER and got checked out. Of course all is ok. I feel very off balance and so weird in the head. So hard to tell if this is a Herx or just the Steroids making me feel so terrible.
Trying to Detox as best as I can. I have been here before without the Steroids. Within an hour of taking them, my Anxiety is as High as it can get. Xanax and the like does NOTHING ! My body won't calm down. Even if I get my head sedated, the wired feeling below the head is incredible and so uncomfortable.
Again, my head feels like I ate lead paint and like I'm swaying on a boat all day with fullness and ringing in the right ear.
Do u guys think this will get better once the Steroids are out of me, or can 2 weeks of Prednisione cause permanent damage.
I know what I need to do once I get out of this, but trying to figure out how to ride this out when I can get no relief. I've been just sitting in my office chair for 12 hrs/day trying to manage symptoms. Taking Benadryl, Percocet, etc. to try and calm down CNS..
Feels like Akathesia, a sensation of wanting to crawl out of your skin.
For those of you who were ever on Steroids, did you have any of this ? Will it go away once I'm off ?
Thanks in advance...
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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manybites
Frequent Contributor (1K+ posts)
Member # 33750
posted
It took me 1 year to reach back to 6 artemisin a day since being hospitalized from FULL BLOWN BABESIA .2 Years ago ( 3 times in ER for the same reason as you ) I could take up to 15 artemisin a day.
Please your neurotoxins are high due to taking it to high dosages.Slow down.Take slower dosage and only one day full dosage to reach the brain.
I have felt same as you but never went for steroids refused them and included them as alergic to me in the file.
SAUNAS are the only ones that can help and TRY MANGOSTEEN juices or just for your sake one day off and take activated corcoal so you feel HUMAN again even for a day or just a break .Start over again with lower dosages and try only high dosages ocasionaly.
I have been fighting babs for 4 years .RElapsed many times but could never reach the full dosages and handle them or stay in mepron and malarone to clean them from my liver.
I also learned from previous drs and hospitalizations you need Anti anxiety meds to go through it and anti vomiting meds to stop the vomiting before it start.
I was vomiting , had diarea , anxiety and pressure in the head severe inside like an ice cream cone was poking inside my brain 2-3 inches deep and no one would beilive you as in ER they do eye test and ran blood work and sent you home untreated.
Take some aspirins as well for clotts or heparin if the doctor can give you .
I know in both cases the killing and non killing of babs is horrible.It seems like you might have duncani or other strains as well as I feel in my case more than one.
Take the activated corcoal and even though you are going to bind your medications save your SENITY .Hope you have treated bartonella or BLO as this can flare at the same time.
First time I am pulsing and feel HUMAN.WHen I was taking them all at once I thought I lost my mind and 3 times in ER sent me HOME with ANXIETY and hospitalization did not help either only blood transfusion was the only option to kep me alive and let me get out of that hospital alive as they were treating me with EVERYTHING but stoped me from taking artemisin and RBC went down him so my heart and body and BABESIA was fully blown in a month.
I was walking to the ER and got out of the hospital in a wheelchair.I should have never gone there and take the mepron , malarone and artemisin and would have been better.It took me one year to come back to where I was before hospitalization.
Babesia is no joke if FULLY blown .No steroids please .
Posts: 1379 | From disable | Registered: Aug 2011
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posted
I was on two steroids long term during lyme treatment. Post brain surgery - had severe meningitis and NEEDED to be on the roids to get the swelling down in my brain and spinal cord.
I was on one heavy duty steroid called Dexamethasone - a real bear to get off of. I needed to take Prednisone to help tapper me off the dexamethasone. It was a real mess..
That was nine months ago that I finally tapperd off of both steroids. Was on for close to 5 months total.
What I can tell you is I went through tapper hell getting off of the dexamethasone and then the prednisone. Most everything you talk about in your post. I tried to manage the steroid w/d symptoms with other meds - just to get me through the bad stuff.
What I can tell you is that it does get better - for me anyway - but it took about 3 or 4 months once OFF of all steroids before I began feeling like myself again. But then of course all my lyme symptoms had gotten worse so I had that to deal with.
My Neurosurgeon and Endo both said it could take up to a year before the body bounces back from long term steroid use. Just try to take it one moment at a time and eventually you will clear all the crap out of your system but don't try to cut your dose to much or you will feel worse. Best of luck to you...TG
Posts: 151 | From North East | Registered: May 2011
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I'm thinking that since you weren't on the steroids that long, that you will be okay. Maybe this is a herx since you pushed through your meds. Thats the most likely scenario in my opinion.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
I was on steroids for about 2 mo ... way back before I was dxd with lyme. (but I did have lyme then)
It didn't make me worse. So there is hope!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Steroids interfere with calcium, magnesium, sulfur, potassium, and essential fatty acid metabolism (and probably a lot of other nutrients as well). Supplementing with these nutrients is a huge part of dealing with steroid side-effects.
Water retention from steroids is from sodium retention, excess potassium loss. Replace the potassium and reduce sodium intake. Make sure to drink enough fluids so the body doesn't retain fluids because of being in a "dehydrated" state. Foods high in potassium include most all fruits & vegetables, especially bananas, parsley, potatoes (with skins on), raisins, prunes, etc. See http://lpi.oregonstate.edu/infocenter/minerals/potassium/ for more info.
Sulfur. If you can take it, MSM is an excellent way to combat the connective tissue & skin side-effects of steroids. Dose probably should be 6000-10000mg, but start with 1000mg and work up slowly. ART/muscle testing can help find the right dose for you specifically.
Do not taper off the steroids too quickly - doing so can trigger an adrenal crisis, which can be fatal. It is better to go slowly and take the nutritional supplements to counter the steroids.
A comprehensive Multi-Vitamin/Mineral supplement should be part of your supplement routine - the B-Complex vitamins will help the adrenals recover from the steroids more quickly.
Extra Vitamin C will help with skin/connective tissue side-effects, and also help combat inflammation that may try to flare up during & after the steroid taper.
I'm tapering off Prednisone by 0.25mg/two weeks...I started at 2mg/day after getting a series of Solu-Medrol injections to deal with major allergic reactions. It is slow, but this way I don't crash. My adrenals were not functioning well before I was given the solu-medrol shots, so I have to taper more slowly.
Also, be aware that your tapering may need to be slower once you get down to 10mg/day. You can do stuff like alternating 10mg and 7.5mg every other day (10mg one day, 7.5mg the next, 10mg the next after that, etc.) for a week or two and then down to 7.5 each day for a couple weeks, etc. I've had the most success tapering like this (the alternating day thing) each time I've been on steroids (most of my experience with steroids is from before I was diagnosed with Lyme or knew anything about Lyme).
My DH has been on long-term steroids for over 12 years and we have used nutrition to improve his bone density (11% improvement in 1 year), skin/connective tissue health, and other steroid side-effects.
Exercise can also help, but don't do it if you can't...deep breathing is an excellent exercise if you can't do anything else.
For the brain: Essential Fatty Acids (Omega-3) are very, very important. Do you take any Fish or Flaxseed oil? If not, I highly recommend it if you aren't allergic...
Here's what my DH takes to counter the steroids:
Calcium Magnesium Zinc Daily Multi MSM Calcium Ascorbate (non-acidic Vitamin C) Cod Liver Oil (Vitamin D, Omega 3)
Exercise - My DH goes hiking on weekends (in the mountains)
Another suggestion for the brain & anxiety: GABA is a calming neurotransmitter. I've been experimenting with it and have found it to be very relaxing and helpful for anxiety and sleep issues. I had tried GABA once before with no success, but my guess is either I wasn't taking a high enough dose or the brand I got then was no good. The GABA I'm taking now came from my Naturopath's office.
I also agree with the detoxing - that is very important. Don't take the charcoal within 2 hours of the steroids, though - doing so would be like quitting the steroids cold-turkey because the charcoal would bind all the steroids...
And no, I do not believe 2 weeks of steroids is enough to cause permanent damage.
I hope this helps...take care,
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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posted
I think we need to have a solid rule here: "LYMIES, NEVER EVEN CONSIDER THE E.R. UNLESS ONE IS 30 MINUTES OR LESS FROM DEATH."
Posts: 348 | From MA | Registered: Dec 2010
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I think that's a very dangerous rule. I go to the ER a lot more than I'd like to, and I've never had a lyme related problem.
Gary, you're going to be okay. It was short term use. I was getting IV hydrocortisone for the first 6 months pre and post IVIG transfusions, and that didn't bother me one bit. That's a lot of steriods, every two weeks. Also, I was put on oral steroids for 5 days two winters ago with severe bronchitis, again no issues. This short term usage will flush out of your system with no major issues. I think it won't take too long and you'll get back on track. We are all more sensitive to certain things than others. Steroids don't seem to bother my lyme, not that I notice anyway...but I'm so screwed up I don't know that I'd make a connection!
I definitely did not ever get what you are describing though....I get restless from the IV Benadryl, and had to switch to oral. The IV steroids didn't bother me. I'm off them now, though.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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-------------------- 3 months Doxy 8 months of Tetra 7 months of Biaxin/Plaq. 4 months Doxy/Biaxin/Plaq. 5 months Biaxin/Plaq. Back on Doxy/Biax/Plaq On the road to recovery. Trying to make people Lyme Aware....... Posts: 289 | From R.I. | Registered: Jun 2009
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
im just so sorry you are going thru this. it just isnt fair this stupid disease
i have no experience and have seen short dose pred be ok for lymies...but this sounds so awful
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
I see mention of steroids from time to time on here. I'm confused because my LLMD said absolutely no steroids while being treated for Lyme. She said it compromises the immune system and will let the LD go on a rampage in your body. This was regarding cortisone specifically, maybe it's different steroids or I'm missing something. I also don't have cos.
Posts: 80 | From US | Registered: Aug 2011
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lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
Doing better today.. Still lots of symptoms, but I can laugh a little... I'm totally off the Steroids x 2 days now.
Big mistake, never again...
Did 1gm Salt/c Yesterday and it seemed to make a big difference.
Perhaps Karenl is correct and my good friend Gael. I'm gonna get back to Salt/c and perhaps add Rife back in shortly.
It's just not worth the decreased quality of life and Brain Herx's that reap Havoc on me that turns me into a Psych case.
Gonna try an approach that I havn't done in a long time so I can "Live" a little.
Go SLOWWWWWWWWWWWWWWWWWWWWWWWW
In the meantime, if your Herxing and want to laugh, watch this video...
Thanks for the support folks.. I really needed it this time.....
Perhaps Toxins from the Drugs themselves and not killing anything... Have you ever thought of that ?
Things that make you say hmmmmmmmm
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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Hambone
Frequent Contributor (1K+ posts)
Member # 29535
posted
quote:Originally posted by lymetwister: Do u guys think this will get better once the Steroids are out of me, or can 2 weeks of Prednisione cause permanent damage.
I know someone at Paxil Progress who had a hellacious withdrawal from Paxil, and later took Prednisone for 10 days for a bad sinus infection.
All hell broke loose for her as well. Anxiety through the roof.
It took her close to 2 months to get back to baseline ( where she was before taking the Pred ).
I feel like our HPA axis is already so compromised with Lyme and friends, and throwing steroids on top just blows that fuse out even more.
I don't think you will have permanent damage from this. But I also don't think it will be ok once you are off the Pred. I think it will slowly get better over a 1-3 month period.
This is solely based on what I have seen people on ssri and benzo withdrawal forums go through when they crash from steroid usage.
Posts: 1142 | From South | Registered: Dec 2010
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