posted
I was feeling a little better this afternoon (still can't leave the house). So i took a super hot epsom salt bath.
Right away i noticed i started feeling crappy. REALLY crappy. I still do 30 minutes later. I'm curled up in bed .. so discouraging.
i feel so drained but to uncomfortable to sleep. terrible.
Anyone heard of this?
Posts: 339 | From Outer Space | Registered: Aug 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Yep. It happens a lot. But so sorry. You should stay home until you feel better. There are many reasons for this suggestion.
Did you drink enough room temperature water throughout the day - and replenish minerals and electrolytes? Hope so. If not, likely that affected your reaction.
You may be more exhausted for a day or two. Be sure to drink a good amount of water and rest. Avoid overdoing anything until you feel better. Well, actually, avoid overdoing always - I just don't know how to say that exactly right.
Even your "new normal" activities may be too much for you until you feel better.
While it is likely from the liver working hard, and the adrenals also being pushed, this could be a result of hypoperfusion (decreased blood flow) to the brain - as that is frequent for lyme patients after exertion and heat exposure. The brain (&/or the heart) can be affected for a couple days, however, rest should help you feel better in a few days. Don't push, but support.
Next time - a warm bath, warm enough to be nice and relaxing for 20 minutes is best. Never hot as heat can really clobber most lyme patients. As summer approaches, keep in mind that getting overheated can also have a harsh impact.
Get your ice packs ready to take with you when you first get into a car. If out and about, try to have an ice bag with you to refresh when needed. Especially, if you have ice as you get into a hot car, this can avoid overheating. Even if a car has AC, it takes a while for it to cool down.
So, for those with lyme, heat can stress all body functions but especially: liver, kidneys, adrenals, brain & heart. All your nervous systems are also affected by heat.
With lyme, the signals get overloaded and heat can further add to the dysfunction - that can take days to reset even to our "new normal" - so listen to your body.
Inner and middle ear functions can also go a bit "tilt" from heat and affect balance.
It's best to drink room temp water, though, and not iced cold as the body's internal temperature control actually has to work harder to process iced water. In the long run, the body's temp control is turned up from ice water and it can be too much of a shock.
Warm epson salts baths will still be important (but not for a couple more days). Twenty minutes is the max time for starting but the very instant that "too much" sensation hits, so as to avoid adrenal shock - gently and slowly cool down, rinse off and get out and rest for while.
It's best not to plan to go out after a warm bath (until you know how you'll feel).
If you do a sauna, it should be a FIR (low-heat far infrared) sauna as that works quite differently from conventional models. When used correctly, FIR saunas are actually excellent for those with lyme and suggested by many LLMDs. The cost is just too much for most so, then, the warm epson salt bath takes front seat to detox methods.
But also remember liver support, adrenal support, etc.
Plan ahead and, on hot days, never leave home without at least a couple of freezer zip-lock bags for ice - it's that important. Put some in all your bags, your car, etc. now.
Reusable ice bags are best (for the environment) if you can get a few of those and use blue ice packs when you have freezer access. When at friends' houses, put your car keys on top of the freezer so you'll remember your ice pack. It's that important. Really.
Ice packs can be put in the small of the back when seated but, most importantly, drape around the neck so the blood going to the brain is cooled. Ice on the wrists will also help. This is not to be shockingly cold, so alternate until the temp is just right to leave in one place for a while.
An ice pack can be placed on top of the head, inside a hat.
You might also consider a "cooling vest"
So, take it easy. Enjoy life at much as you can but stay cool. -
[ 05-22-2010, 04:08 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Last year when i had lyme symptoms they were cleared within a few days by treatment. Now it's beed nearly 3 weeks and i'm worse than i was day 1.
Posts: 339 | From Outer Space | Registered: Aug 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Yes, this can be very frightening. However, the more you learn the more likely personal power will replace fear.
For anyone to reply to your above post, they need a little background: --------------
Recent post of yours:
Quote: " . . .I've been infected for less than a year at most. I was bitten last summer and treated for a month. I'd been symptom free until early this month.
So a year if it's a relapse ... only a few weeks if it's a new infection. . . . " (end quote)
====================
Do you have a real ILADS-educated LLMD? Your doctor should have told you that treatment will take a while.
So, don't be scared, be informed. By knowing how best to take care of yourself, your treatment will have a better chance of being successful.
You didn't receive proper treatment last year so it's going to take a lot longer than a few days this time. Seeing bumps in the road can allow you not to fall into them. So, learning self-care will help treatment have a better chance and you will feel more empowered.
Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I hesitate posting this as it can be unsettling. Not to toss about cliques but knowledge is power. Light is better than darkness (well, except at night when we really do need darkness, eh?).
So, take a breath, center yourself and take on the cloak of objective student --- as you learn more. If you feel fear, take a breath and take a break. It's a lot to take in so pace yourself here just as you will need to do with your activities, etc.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" - 2007
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
". . . If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided. . . ."
- Full article at link above. It's important to read the full article.
===================
* Coinfections (other tick-borne infections or TBD - tick-borne diseases) are not discussed at length above. Be sure to have your LLMD assess you for the full range of TBD. Lyme rarely travels alone.
** Nutritional Supplements in Disseminated Lyme Disease **
J.J. Burrascano, Jr., MD (2008) - Four pages
====================
It's very important to have this book as a reference tool for self-care and support measures. It answers so many questions in detail that is impossible here.
posted
I'm seeing a well known Dr. in Mt. Kisco NY now. I've only seen him once earlier this week.
He said there's no real way to tell if my current symptoms stem from my old infection or a new one, since i live in a wooded area.
I'm feeling much better already since the episode after the bath. I'm just anxious to get back to my life. I haven't worked in 2 weeks, i haven't left my house (or bed really) in 5 days now.
Sometimes i'll start to feel better, i'm perk up, more alert. I feel my strength return to an extent. Never back to normal, i can still feel it when i walk up a flight of stairs. All this usually happens later in the day.
The first few times it got my hopes up, but now i almost know that i'm going to crash again, either later in the night, or the next morning. I'll wind up back in bed shivering without a fever, feeling like my body is giving out.
It seems like advil helps me alot, but i've been taking it for a few days now and i know i can't keep it up.
Posts: 339 | From Outer Space | Registered: Aug 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Sorry to be so matter of fact about this. Yes, of course - a crash will follow exertion at this point in time. It's just how it goes. If you know that, you can plan accordingly to prevent it or to lessen it. Take it easy. Also be sure your liver and your adrenal support is in place. It's essential. Absolutely essential.
Be sure your nutrition is in order. Also essential. You can't afford blood sugar highs or lows right now. And you need all your nutrients.
I'm so sorry that you've not gotten the proper patient education about this. But now you can read the basics in the links above.
When you read over the self-care guidelines and get the book suggested, this becomes much clearer.
You might also contact your local lyme support group as it seems all this is coming as a surprise. If you have other lyme patients with whom to talk, you can get a better sense of the "new reality" and what steps are needed along the way.
Proceeding with care, you can get better. But, right now, your body is different and it requires specific measures. Life has changed for you. Yes, you will have to make some major changes to your thoughts (self-talk), expectations and activities. Rather than fear all this, it's just what we have to do to take care of ourselves. It's the only way through.
Most of the changes we have to make are really just part of healthful living. The more extreme changes in activity, planning, etc. is just what a patient with any serious disease would do. And, yes, contrary to what most MDs think, lyme can be a very serious disease. So, we pay attention to what our bodies tell us - and we do what we have to do - so we can get better. Take care.
[ 05-22-2010, 07:21 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Afterthought. You said you took a super hot bath. You said you've been taking Advil. Advil is Ibuprofen. Ibuprofen can be hard on the kidneys. Perhaps, the combination of heat stress and ibuprofen stressed your kidneys. If so, exhaustion would be an understandable reaction. Rest and light activity will help.
Be sure to replace electrolytes and minerals in just the right amounts. Keep water intake consistent but not a waterfall.
posted
I think you're right. But i have to tell you. it's not exhaustion (although that's a part of it).
It's something i can't describe, i'm shivering, every cell of my body hurts .. it's the worst feeling i think i've ever had. It's gone for now. Thankfully. Now just these headaches.
Posts: 339 | From Outer Space | Registered: Aug 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- " . . . shivering, every cell of my body hurts . . ."
sadly, is very common with lyme and with treatment. Also be sure your LLMD assesses you for Babesia. Shivering is common with that.
Treatment is rough, yes, but it's very common to have the symptoms you describe. You will likely feel awful on and off for a while. It's just how it goes. Sorry you did not get adequate treatment early on but you still have a good chance, it's just going to be more of a rough ride for longer.
Again, liver support is vital. You may need to take a second look at that as it can help reduce inflammatory cytokines. Antioxidants, too, make a huge difference.
Two more sources that help explain what is going on both with your body (see what others have gone through and how much better some are) - and medical politics are also explained:
DVD is $35. and worth every penny. It explains a lot. -
[ 05-23-2010, 02:44 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
You sound like me in early treatment. Big herx from hot tubs but I was better for it later. It may take
a few days to recover. Doc told me to rinse with cool water. After being cold to the bone for
several years-I said you have to be kidding--and he said not kidding do it. So I do and it really
helps the nerves. But most times all I could do was sleep afterward. It will get better.
Do like Keebler said and keep electrolytes going in. I like the ones they have for vomiting and diarrhea.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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