posted
He said it would get me thru my herx and safe for just three days. I've only heard bad about Lyme and steroids. Has anyone used them and been ok?
Posts: 415 | From USA | Registered: Jun 2012
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philly78
Frequent Contributor (1K+ posts)
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posted
I've never used them but do know a chronic lyme patient who has and still does on occasion. I don't know that I would feel comfortable taking them though.
What dosage did you get and what was the reasoning?
-------------------- When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal. Posts: 1000 | From PA | Registered: Mar 2011
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posted
I don't know the dosage because I haven't picked the up and I don't think I'm going to pick them up. I called the dr and told them how sick I am. I was hoping for something to calm down the anxiety and pain. They said I was herxing and could take the prednisone to make it through. I've only heard bad things about steroids so this has really thrown me.
Posts: 415 | From USA | Registered: Jun 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Considerations and variables are many.
1. are you absolutely certain this doctor is ILADS "educated"?
2. Even if so, if a patient is very bad off with a a herx, this may be required - with cautions in place. You would already be on abx and taking them through the prednisone - so it would not be like taking it without abx.
Still . . . to manage a herx (unless you are really in emergency state) the better way would be with good liver & kidney support.
Or backing down the dose of abx and ramping up slowly as to PREVENT a herx in the first place.
So . . .
3. what IS your liver & kidney support?
What IS the herxheimer plan you've (hopefully) been given?
Some doctors may skip this and opt for steroids instead if they are not educated enough in the support methods (as are most - but not all- ILADS member doctors).
If you've not been instructed in proper liver & kidney / herx support, I would not take the steroids but get on a support plan instead and
if you are already on kidney/liver/herx support then something needs to be adjusted there. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- For a reference point, see the parameters here for HOW to safely employ steroids for emergency care - usually only when a life-threatening situation (or if vision or breathing are in the danger zone):
LIVER SUPPORT & and several HERXHEIMER support links, too.
Some KIDNEY support detail, and
LL ND (naturopathic) link here, too, with articles and books to shed more light on how to manage a herx. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
CORTEF or prednisone??? BIG difference. If it's prednisone, I would pass .. unless you are so ill you feel like it'll take months to recover from the herx.
IMO .. 3 days of pred won't kill you .. but ...
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
uh never heard of a llmd prescribing steroids.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
And if by chance it is cortef (going to call pharmacy to make sure) is cortef safe? I'm going to look into that.
Posts: 415 | From USA | Registered: Jun 2012
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desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
Low dose Cortef okay - everything else not okay.
I was on 4 months of Dexamethasome (one of the strongest steroids out there)post brain surgery to reduce the swelling. Put my TBI's into a huge huge flare up problem from hell.
I was on Cortef to help my body wean off the Dexamethasome and according to my now LLMD, the Cortef was okay. Be careful with anything else or you may regret it!
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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posted
And then there's the questran he's got me on.
Posts: 415 | From USA | Registered: Jun 2012
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
If not Burrascano's, whose protocol does he use? Is he trained to treat Lyme?
I question it because typically Lyme patients are told never to go on Prednisone without taking abx. ie - if you're in a life threatening situation, take abx with the prednisone. So to tell you to take prednisone and stop abx is peculiar for a Lyme doctor.
I'm not saying it's wrong .... there could be something I don't know ... but it does go against everything all of us have been told.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You were told to "Hold off on antibiotics while you take prednisone"? Oh, my. If the nurse told you that, that order is from the doctor. A nurse would not be able to tell you that on their own.
In the STEROID thread, you can read the dangers of that.
Even if for a few days, unprotected by abx, you could suffer steroid damage for up to six months (that's how long it can stay in your body) . . . and effects can go beyond setting you way back.
Are you in a life-threatening emergency with this herx reaction that you have right now?
Is any organ or any system at risk if the inflammation does not get down ASAP?
If not, my advice is to NOT take the prednisone 0- study the LIVER SUPPORT thread. You need more than just ALA (but am glad he recommended that).
Looks to me like you need to find a new doctor.
You might want to find out WHY he does not follow Dr. B's guidelines? Now, I'm not sure any LLMD should use that set as a recipe for every patient.
However, a good LLMD should know it inside and out and then also know how to make adjustments for each patient.
What does he think about Dr. B's guidelines and ILADS' conference materials?
A link to follow will answer your question about Cortef. But, yes, if LOW DOSE it is safe. See those links there.
NOT at all in the same category. -
[ 09-25-2012, 06:11 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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MichaelTampa
Frequent Contributor (1K+ posts)
Member # 24868
posted
Key with cortef (hydrocortisone), according to some docs, is "physiological dose", meaning, the amount your body should be making, although perhaps it is not making due to adrenal fatigue. The body should be making up to about 30mg per day, still, supplementing the whole thing long-term is normally more than most would do, normally 10 or so mg/day. But, for a 3 day period, that is different. Just wanted to give you some benchmarks when evaluating the amount prescribed, if it really is cortef/hydrocortisone. Prednisone is stronger and also just different--the body does not make prednisone, it makes hydrocortisone.
Posts: 1927 | From se usa | Registered: Mar 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- That CORTEF thread is not in the STEROID thread, after all. Here you go:
posted
Just backing off the antibiotics should help you get over the herx.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
Prednisone, yikes! I got permanent eye damage from a light dose of steroids. Personally, I would never take steroids (even topically) unless it was life-threatening.
There are sooooo many ways to deal with a herx other than steroids.
What are your main herx symptoms? Maybe some of us can chime in for symptom relief that you can do other than steroids.
Posts: 2839 | From California | Registered: Jul 2012
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lymeboy
Unregistered
posted
Not an LLMD, switch docs. This person will make you worse.
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posted
Oh my gosh! I cannot Lay still. I just feel like I'm going insane, sick to my stomach, nausea, achy, places on my face feel like they're burning.
I haven't had an appetite in over a month though. I am ALWAYS sick.
I know of someone who was referred to my dr by ILADS. I don't get it.
Posts: 415 | From USA | Registered: Jun 2012
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posted
It sure didn't seem like the nurse had discussed the not using abx issue with the dr because when I told her I hadn't had my shot today she said, "oh yea. I think that's a reasonable thing not to do."
Posts: 415 | From USA | Registered: Jun 2012
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posted
I was so shocked when he prescribed prednisone! I don't know how he's still in business!
I know I've got to get to another doc. I am praying I can make it long enough to get there!
Posts: 415 | From USA | Registered: Jun 2012
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Judie
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Member # 38323
posted
"I just feel like I'm going insane, sick to my stomach, nausea, achy, places on my face feel like they're burning."
Oh dear! That sounds miserable. Are you taking oral antibiotics too or just getting the shots?
Are you taking any other meds or supplements (feel free to PM me directly if you don't want to post on the public forum what you're taking).
Some antibiotics/supplements agree with me better than others. I have a horrible reactions like what you described with some of them.
Are you have esophagus spasms too?
Is your face swollen too?
Posts: 2839 | From California | Registered: Jul 2012
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posted
I also have chills and sweats. I cannot get relief and prednisone is supposed to fix this?!
Posts: 415 | From USA | Registered: Jun 2012
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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philly78
Frequent Contributor (1K+ posts)
Member # 31069
posted
What are you doing for detox?
-------------------- When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal. Posts: 1000 | From PA | Registered: Mar 2011
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
Messa-
Perhaps get on the wait list for a second opinion from another doc?
I wound up having to change in mid-treatment from one LLMD to another (both ILADS trained).
Both were helpful, but the treatment protocol of the first doc's just didn't agree with my body, so I made the hard decision to get a second opinion and switch.
Posts: 2839 | From California | Registered: Jul 2012
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posted
Judie, I'm not on orals. I tried them before and my stomach couldn't handle them. My Digestive system is very bad. So I missed almost all orals except ceftin. I tolerated that for 4 1/2 weeks. My face isn't swollen but my eyes swell and get red. Only doing claforan shots. Yes I have esophogus spasms. I can pm you. Philly78, for detox I am drinking a lot of water, Epsom salt baths and cholestyramine.
Posts: 415 | From USA | Registered: Jun 2012
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lax mom
Frequent Contributor (1K+ posts)
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Cholestyramine nearly killed me. Really. It lowered my seizure/startle threshold to dangerous levels that caused me injury.
I could not tolerate it past one month. I tried several times but had to listen to my body that it was not right for me.
FIRST: check to see if it has any additives. Some brands contain dangerous artificial sweeteners or even "natural flavors" that are not natural at all but chemicals.
Even if just plain or only with stevia . . .
My first guess is that you are depleted in important nutrients and minerals, such as magnesium. Cholestyramine can do that.
Also, ALA (as the sole liver support), and the detox measures are not enough.
There are many options much easier on your body than cholestyramine and many other great ways to support your liver - which will enable your body to better "detox" as it's not so much as event as ongoing action from within your body.
Be sure those epsom salts baths are NOT HOT. Only cozy WARM. Heat can do lots of damage to many with lyme. And no longer than 20 minutes but get out sooner if you feel the need.
Don't get chilled as you rinse off. Use slightly warm water to rinse. Blot dry, loosely wrap up and rest for at least 30 minutes then.
The LIVER SUPPORT link above is also all about "detox" support. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Yes I tried to only get it warm and not hot. I get chilled as I get out. I guess because chills are some of my symptoms too. Keebler, I know I need more liver support. I know I need to go back and look into all the liver info you told me about. I've just been so sick. Is there something I can start on right away? Just to get me through? It's hard to research while so sick. I know you know what I'm talking about.
Posts: 415 | From USA | Registered: Jun 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Milk Thistle is a good basic but take separate from Rx timing.
Keep up the ALA, though. They work nicely in tandem.
If you are on any babesia treatment, timing is especially important to be separate from Rx.
Magnesium, too, is fabulous for the liver. Peter Gilham's Natural Calm is a nice one.
Hope you feel better soon. Remember, this is not a sprint but a marathon. Take it easy, when possible. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Many people are very intolerant to clarforan and can exhibit very bad allergic and very serious allergic reactions to it.
Seriously look into this, look up the side effects of clarforan, unless you feel completely confident that the claroren has not caused the swelling and the problems.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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posted
Thank you
Posts: 415 | From USA | Registered: Jun 2012
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lymeboy
Unregistered
posted
Green Tea is a suprisingly effective herx killer for me. As is Lemon water, and Chamomile Tea.
I am only saying what has worked for me here, so I know what I am about to say will get some folks upset. BUT, at my absolute most miserable, a few hits of marijuana has made me completely normal. Again, this is only something that has worked for me, and I have only done this twice in the past year. Just a note, in case you might have experience with MJ. Personally, it temporarily relieves all symptoms COMPLETELY for me. The next day is usually much better as well.
I tend to look at the simplest and most natural substances to handle a herx, and the few items I mentioned here seem to work better than anything else at all. I cannot imagine taking a xanax or prozac. YIKES.
No matter what, for god's sake do not take Prednisone. That stuff is a nightmare and will mess a Lyme patient up in short order. PLEASE dump your doc.
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Cholestyramine can cause a cytokine response in Lyme patients. I would stop it. I got very sick on it. Couldn't tolerate it at all.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Lymeboy, did Xanax not do anything for you or did it make you worse? Have you tried Atavan?
Posts: 415 | From USA | Registered: Jun 2012
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quote:Originally posted by Messa: Anyone heard of whelcol?
- Also sucks.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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lymeboy
Unregistered
posted
Back before I knew I had Lyme, I was prescribed a few different meds for depresion, anxiety and the like. One of them was Welbutrin. Which made me feel hopped up on drugs. Just artificially high and not very good. However I was calm. I threw them out after a few days.
I don't recall the others, it was some time ago. But, I have taken Xanax in the past. All I know is that Xanax is powerful, and does not make me feel at all "normal". It might have made me calm (sedated is more like it) but it felt recreational. I could never get used to any of that crap. Plus, if I recall, Xanax can melt your brain after a while, and that's the last thing any of us need. Frankly, IMO, you're better off using MJ. These mood RX are pretty dangerous.
Never used Atavan. I am strongly of the opinion that most of us , sick or not sick, have no business taking these types of drugs. They're grossly overprescribed. I'd look to more natural methods if I could. It's cheaper, and better for you.
If you haven't already, try drinking lots of Green Tea. Do A lot of Lemon water. I know that sounds overly simplistic, but it does help. In fact it is my biggest helper. Alka Seltzer Gold is good as well. There are so many natural remedies for mood disorder and anxiety. I know dealing withi this is hard, But addictive RX could potentially make it harder.
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posted
Warning on green tea. For some, it intensifies the effect of the abx. So you could herx even harder.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Please read about the side effects of Claforan. I don't want to scare you but they can be life threatening. When I had Lyme my LLMD, a very well known one, would not use it because of the potential side effects.
Please take precautions and read this and go to the ER, if after reading this it sounds like what you are experiencing:
Reducing Tyrosine-rich foods (red meat, aged cheese, red wine)
Eating Mediterranean type diet (fish & poultry, limited red meat, lots of veggies, whole grains only/no refined grains, healthy fats - EVOO, limited to no sugar)
Warm bath soaks, epsom salts, drinking lemon water are all good things but sometimes more is needed.
Liver support may also not be all you need - you may also need adrenal support during a herx. Ashwaganda is a good herb for this because it is gentle compared to other more stimulating herbs (such as Gensing).
-------------------- -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: 4167 | From WA | Registered: Feb 2011
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
It does sound like you should look into the side=effects of the claforan.
I find coffee enemas a life=saver in terms of detoxing. YOu can do a search here for instructions. It may sound daunting, but it isn't once you get used to doing it. Try a plain water enema first to get used to it.
Yes, we all agree, prednisone??!! Yikes! Only in a life-threatening situation, as others have said. I was done in by use of it before I knew what I had (after trying to avoid it for most of my life).
Posts: 3792 | From around | Registered: Mar 2008
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posted
From someone who has been there, wish she hadn't done that...
I was stung by a bee/hornet 6mo ago. I am allergic to some bees, though we aren't clear on which/how many just yet as I couldn't get through the venom testing. ANyways, stung, drank half a bottle of Benadryl and headed to the ER as my throat was getting tight. ER doc gace me a high dose of steroids there, along with a breathing treatment then sent me on my way with a Rx for prednisone, 40mg for a week. I *knew* in my head that steroids and Lyme were a bad mix(I had been in *remission* and feeling really good)By day 3 I had major 'roid rage and stopped the steroids...but the damage was done. I have been in a slow and steady decline ever since and am now in a pretty bad place back on high dose doxy, zith, etc, etc....I will NEVER take steroids again, unless I am truly dying. I think I would have been fine with more benadryl and the breathing treatment alone...So, having btdt I would say do NOT take steroids unless it is a true LIFE threatening emergency. I just threw away almost 2 years of good health to be right back where I started... Posts: 13 | From MA | Registered: Sep 2009
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