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?
Posted by philly78 (Member # 31069) on :
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?
Posted by Messa (Member # 38065) on :
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.
Posted by Keebler (Member # 12673) on :
- 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. -
Posted by Keebler (Member # 12673) on :
- 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. -
Posted by Lymetoo (Member # 743) on :
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 ...
Posted by randibear (Member # 11290) on :
uh never heard of a llmd prescribing steroids.
Posted by Messa (Member # 38065) on :
Yes the nurse actually said prednisone.
My dr said for liver to take ALA. alpha lypoic acid.
I do know he doesn't follow burrascano.
Posted by Messa (Member # 38065) on :
And if by chance it is cortef (going to call pharmacy to make sure) is cortef safe? I'm going to look into that.
Posted by desertwind (Member # 25256) on :
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!
Posted by Messa (Member # 38065) on :
Just talked to pharmacy. It is actual prednisone. Not cortef.
Posted by Messa (Member # 38065) on :
My drs nurse also said to hold off on antibiotics for now.
Posted by Messa (Member # 38065) on :
And then there's the quest ran he's got me on.
Posted by Messa (Member # 38065) on :
And then there's the questran he's got me on.
Posted by sixgoofykids (Member # 11141) on :
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.
Posted by Keebler (Member # 12673) on :
- 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 ]
Posted by MichaelTampa (Member # 24868) on :
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.
Posted by Keebler (Member # 12673) on :
- That CORTEF thread is not in the STEROID thread, after all. Here you go:
Just backing off the antibiotics should help you get over the herx.
Posted by Judie (Member # 38323) on :
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.
Posted by lymeboy (Member # 24769) on :
Not an LLMD, switch docs. This person will make you worse.
Posted by Messa (Member # 38065) on :
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.
Posted by Messa (Member # 38065) on :
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."
Posted by Messa (Member # 38065) on :
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!
Posted by Judie (Member # 38323) on :
"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?
Posted by Messa (Member # 38065) on :
I also have chills and sweats. I cannot get relief and prednisone is supposed to fix this?!
Posted by Lymetoo (Member # 743) on :
Sounds like a bad case of babesia.
Posted by philly78 (Member # 31069) on :
What are you doing for detox?
Posted by Judie (Member # 38323) on :
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.
Posted by Messa (Member # 38065) on :
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.
Posted by lax mom (Member # 38743) on :
It could be the cholestyramine.
Posted by Lymetoo (Member # 743) on :
Cholestyramine is rough stuff.
Posted by Keebler (Member # 12673) on :
- 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. -
Posted by Messa (Member # 38065) on :
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.
Posted by Keebler (Member # 12673) on :
- 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. -
Posted by Abxnomore (Member # 18936) on :
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.
Posted by Messa (Member # 38065) on :
Thank you
Posted by lymeboy (Member # 24769) on :
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.
Posted by sixgoofykids (Member # 11141) on :
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.
Posted by Messa (Member # 38065) on :
Anyone heard of whelcol?
Posted by Messa (Member # 38065) on :
Lymeboy, did Xanax not do anything for you or did it make you worse? Have you tried Atavan?
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Messa: Anyone heard of whelcol?
- Also sucks.
Posted by lymeboy (Member # 24769) on :
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.
Posted by Lymetoo (Member # 743) on :
Warning on green tea. For some, it intensifies the effect of the abx. So you could herx even harder.
Posted by Abxnomore (Member # 18936) on :
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).
Posted by Rumigirl (Member # 15091) on :
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).
Posted by tofumama (Member # 22456) on :
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... Posted by n.northernlights (Member # 17934) on :
5mg prednisone equals about 20-25 mg hydrocortisone
Posted by poppy (Member # 5355) on :
I agree that claforan can be hard to take. It produced a reaction with low blood pressure, hives, etc. Never figured out if it was herx, serum sickness, or allergy. Stopped using it.
No one has mentioned alkaseltzer gold for herxheimer. If that is what you have instead of symptoms increasing because drug not working or bad reaction to drug.
Posted by Messa (Member # 38065) on :
Was your reaction immediate or did the claforan build up in your system?
Posted by lax mom (Member # 38743) on :
Hey Messa did you start feeling better?
Posted by Messa (Member # 38065) on :
It's been a little up and down but not as bad. Thank you. Thank you all for your support!
![[Frown]](frown.gif)