Topic: Living in "no-man's-land" and need to take Steroids
canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Hi All,
Well, bad news on this front. I've developed sudden hearing loss, which needs to be addressed with prednisone (on oral 50mg / day -- might also require injection(s) ), and I live in Canada where going to emerg w/ Lyme would be very dangerous.
Lyme had produced a mast cell disorder (slightly better politics than Lyme, but not much). This means I produce too much histamine and experience frequent severe allergic reactions with gastric involvement – I'm sure they wouldnt know what to do with me at emerg if the Lyme caused the MC to go berserk.
I cant get away with no steroids -- the hearing loss is too severe to be addressed without them. I spoke with LLNP F. at Dr. H's office in NY (I'm a patient of Dr. H's but he'd left for the day (of course this happened late Friday :/ ), and he said some people have an adverse response with only 1 shot. He said, "Just do the regimen that is now working for the Lyme". I've not been doing much bc my MC has been bad and I'm reacting to fods, supplements, etc.
Ive taken 2 pills so far, and seem to have a little improvement of my Lyme / MC symptoms -- this is in-line with what we know: first short-term improvement, and then all hell breaks loose.
Have you had any experience with steroids? What happened? Did you have any warning? What should I watch for? Should I rent an apt. near a hospital Dr. H. could help me at, in case things get critical?
What's the best way to keep safe?
Best regards,
CBL
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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posted
Prednisone crippled me ): I didn't know I had Lyme, but I felt great on steroids, then was basically crippled after I stopped taking them.
I loved my life before prednisone, and now, every day is a nightmare. That was two years ago. I was on it for a month.
Sorry to tell this sad tale. I hate prednisone. It ruined my life. I wasn't on antibiotics though, so maybe it would've been better if I were.
Posts: 748 | From Texas | Registered: Feb 2015
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
OK. I better make an emerg. appt. with Dr. H. for asap.
What dose were you taking?
Have antibiotics not helped you since?
Best,
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
canbravelyme.
Are you on abx, etc. for Lyme & co now?? That would be essential to prevent the "steroid disaster" that Dr. B has spoken about.
If not, can you get an immediate appt w/ F or Dr. H for Monday to put you on a basic protocol to protect you?
It does seem like an emergency that you have the sudden, severe hearing loss. Does anyone have any idea what caused it? It doesn't sound like it. But do ask everyone who works with you.
I don't know much about MC, so don't know how that comes into play here (I need to learn though).
Sadly, I don't think that there is anything Dr. H can do in a hospital, as LLMD's don't usually have admitting privileges. But ask them what they suggest in terms of all of this. Do they understand about MC? I hope so!
Posts: 3792 | From around | Registered: Mar 2008
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Thanks, Rumi!
Part of the problem is that the MC (which was caused by the Lyme) means that I overproduce histamine and am prone to violent allergic reactions. In my case, this has been the underlying cause of 13 years of violent gastric reactions.
MC is usually treated with antihistamines, but the damn antihistamines started causing me tinnitus in one ear, so I had to quit them. I've been highly symptomatic since (2 months), and only able to tolerate a handful of foods. I can't tolerate anything fermented or probiotics! so I can't take antibiotics.
It is unclear, but seems most likely that it is the MC that is the cause of the sudden hearing loss – this is a known possibility.
LLND F said to do herbs – I've been nervous about starting in case they might interfere with the treatment of my ear, or in case they also make me throw up, but thanks to both of your posts, I just pulled out my zillion bottles of herbs and am going to take one now.
I'd also been treating with high CBD / low / no THC cannabis – LLMD Dr. M. (retired) in BC has been doing trials with Dr. Sapi at U New Haven and they have shown that this oil is killing Lyme in vitro. I guess I should go back on that as well...
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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posted
I was on a taper. I started with 4 pills a day on week one, 3 pills a day on week 2, 2 pills a day on week 3, then 1 pill a day on week four. I think the pills were 10mg each (so starting dose of 40mg), but they may have been 20mg. I can't remember for sure.
I've had minimal, unsustained improvement on various antibiotics since then. Altogether I've mostly just gotten sicker and sicker. I'll be starting IV vancomycin soon, so I'm hoping that it will do good things.
Steroids do have a place in medicine and do save lives, but please just be extremely cautious. I've actually read about some people who don't respond to Lyme treatment until they add steroids to their antibiotics, so steroids aren't always a disaster. But they can be detrimental when they aren't used properly In a Lyme patient.
Posts: 748 | From Texas | Registered: Feb 2015
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
my dr gave me 20 mg of prednisone for severe bronchitis and asthma. I took it for three days. I was so terrified of it I stopped. I just couldnt take it psychologically.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
quote:Originally posted by SickSam: Prednisone crippled me ): I didn't know I had Lyme, but I felt great on steroids, then was basically crippled after I stopped taking them.
I loved my life before prednisone, and now, every day is a nightmare. That was two years ago. I was on it for a month.
Sorry to tell this sad tale. I hate prednisone. It ruined my life. I wasn't on antibiotics though, so maybe it would've been better if I were.
I am so sorry to hear this Sam. You are helping so many people though by posting your experience. You are very kind.
I know someone who was on steroids for 17 years, and near death even after quitting them. She just smokes weed now and is doing much better even though she is not treating lyme and has never done so (misdiagnosed so given steroids). That's what modern medicine does. Can't fix it, give em steroids.
I've been on pred before too (several times). Not good. It can drive lyme deeper. Once you take it, you can't go back. It slowly destroys the immune system for some. I don't think any lyme patient should be on on them much less anyone else unless it is an absolute emergency, and only for that time in the hospital (JMO).
-------------------- --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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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
How far are you into your Lyme treatment? In my experience it really depends on the timing.
Steroids right when I got acute Lyme from clueless doctors pre Lyme dx were a disaster and triggered the chronic Lyme mess.
But I have had to take steroids a few times several years after that - after much treatment for Lyme - and it wasn't a disaster at all. I didn't crash afterwards. I do think it rocked my adrenals some again, but nothing drastic.
I had to take them - for allergic reactions and breathing difficulties. It sounds like you need them too.
Posts: 1737 | From Virginia | Registered: Aug 2011
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Hi canbravelyme,
I see your doctor and NP... Last year I had a major skin reaction and they recommended that I get a high dose shot and oral taper that my dermatologist wanted to give to stop inflammation. They were afraid that the reaction would go systemic and internal if we didn't stop it.
Turned out, the skin reaction blossomed into many EM rashes! And here I had been pulled off antibiotics for a few months and given steroids instead! Boy was I scared!
Like you, I also have Mast Cell Disease. I see a specialist for it because my symptoms are so severe, typical medications were not managing it.
Lyme and Mast Cell are a terrible combo. Sometimes it is hard to even decipher which is causing what symptom...
Thankfully though I did not seem to actually relapse or get any worse after all the steroids. Once the EM rashes showed up, were verified, and documented, I was quickly on started meds that I could tolerate. (I tried oral but couldn't tolerate them, then switched to IV as I had so much difficulty with orals!)
I've had extreme stress this year but I have still made progress. I feel blessed.
Canbravelyme, it sounds like you are in a similar situation as I was last year. If the inflammation increases causing more tinnitus, the hearing loss can be permanent. That would be horrible!!!
Both Doc and the NP are so wise due to their extensive experience with countless patients like us.
If you are able to take a herb or two while you take the steroid, it may help you. Remember, it may cause a herx.
The office is just a phone call away for emergencies so if you ever need them, they will be there for you. (Remember this if you ever go to the ER again! )
Posts: 5237 | From here | Registered: Nov 2007
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posted
I assume you are taking quercetin? It can make a huge difference very quickly in mast cell activation/histamine disorders.
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Can you tolerate colloidal silver or another such non-abx method of addressing the pathogens? Whatever might help that you can, hopefully, tolerate.
It sounds like I probably also have MC and need to learn about it. Although, I already have way more conditions than I can possibly address---too many of them life-threatenig!
I hope that you can get through this crisis alright. Thankfully, you have a knowledgeable and experience LLMD's office.
Are we complicated or what??!!
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