posted
this is interesting. almost predictably after every epsom bath I have, within an hour I am full force in this thing again like you hit a light switch.
what is going on here?
Posts: 501 | From Cleveland Ohio | Registered: Apr 2009
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posted
Me three! I think it triggers dysautonomia. People really overlook that in this forum.
Posts: 770 | From USA | Registered: Jul 2006
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posted
Dear lymetwister, I am sorry to hear you are having a rough time. Anything that raises your body temperature would stir-up the bugs. Exercise can cause a herx or detox reaction. Take it easy! Be kind to yourself until you recover.
Dear Myco, I agree that lymetwister's symptoms do sound like dysautonomia. I think I may have it. Feeling faint frequently is a major symptom of mine. Some other members of the forum have suggested POTS, and NMH is another good possibility. The other day, I was moving some boxes, and began feeling like I was going to blackout.
feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Hot showeres, baths, = tachycardia/dysautonmia for me.
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
Jin, I did have a pos. Tilt Table test and do have Dysautonomia, but don't we all ?
Practically everyone here has unexplained tachycardia and low body temps and weakness with prolonged standing, shakes, tremors, etc.
Dysautonomia is Lyme isn't it ? All of these symptoms we all have are CNS disturbances caused by Lyme & Co.
My BP is stable when I stand. I never passed out during that tilt table test, but I had them abort the test as when that Isoproteronil drip was going full force and they induced my HR to 180, I thought I was gonna die right there.
It freaked me out and I probably would have passed out had they kept going, that or would have had a heart attack.
Even the shortness of breath I get sometimes is Dysautonomia.
I just don't see how this differs from having Lyme.
POTS is just another name for what many of us go through with this horrible disease.
I've been out of that hot tub for about 30 hours now and still Herxing away. How could this be Dysautonomia ?
This is just the way I see it anyway, please correct me if I'm wrong.
LT
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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posted
Thats interesting. Mine usually lasts for about 1/2 hr after I get out of the tub then goes away. I think the body just has trouble regulating itself (temp/BP etc) with these diseases after heat, heavy lifting etc..
I feel fairly well now most of the time and am still on abx but today I was moving alot of boxes and also got shakey and felt a little weak, HR and BP went up. Had my heart very well checked out recently and they can never find anything. Took a 1/2 a xanax and it went away. I think the nervous system just has a hard time with any stressor like this.
We do know raising body temp can cause a herx.
What a disease.
Posts: 770 | From USA | Registered: Jul 2006
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posted
I've had to lie down after showering for the last couple of years. Hot weather knocked me on my ***, too.
But in the last 3 months, as I've been getting slowly better, the heat effects aren't as bad and, as a matter of fact, sometimes are not there at all. Exercise is now enjoyable again, and workouts don't leave me broken.
My LLMD says that it's all a herx related to raising body temp.
Posts: 13 | From Vermont | Registered: Aug 2006
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Yup, heat always makes me sick. Dysautonomia was one of my first symptoms. I black out constantly - several times a day. I can't stand in lines at the store, etc. It's one of my most disabling symptoms still.
I also had a positive tilt table test and thought I was going to die. I would be so thrilled if therapy improves this problem.
I have heard that heat therapy is helpful in killing Lyme. I try to sit in the hot tub often but can't stand to stay in as long as I'm supposed to to do much good.
-------------------- Sofi Posts: 150 | From Northern California | Registered: Jun 2009
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posted
Hot weather causes me severe fatigue and shortness of breath! It's one of my worst symptoms.
Does anyone have this problem? I can't go in hot tubs at all anymore. When I try to go in it feels as if I just lit myself on fire! I assume it's neurological? Does anyone else have this problem? Same thing happens if my bath is too hot.
-------------------- My lyme disease blog: http://lymetimes3.blogspot.com/ One BIG Lyme family! I tested CDC + 10/08 My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too) Posts: 470 | From Painesville, Ohio | Registered: Mar 2009
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
When soldiers are in the extreme heat, they are given salt pills, right?
The heat depletes our Na, sodium...extracellular (that's where it is supposed to be). In extreme cases this, hyponatremia (low blood level of sodium) can -> seizures.
That low level of Na wouldn't make Bb very happy 'cause it is depending on Na (and Ca) to go INTO the cells.
Bb needs NaCl for motility and Na for its Na-ATPase and Ca also goes into the cell to activate PKC (calcium activated phosphate transfer onto a protein) which Bb is INHIBITING.
It is "logical" if Bb is PREVENTING calcium from activating...we'd send Ca in...
Bb may "use" Ca temporarily, but looks to have a gene to export it out.
Bb triggers chloride channels and in goes NaCl and CaCl.
Those are "de-icers". The cells are "cold" they need to be "heated up"...now guess what is another "de-icer"...MgCl! But it is not as "reactive" as is NaCl and CaCl.
Epsom salts are MgSO4 which *reduces acetylcholine* (which opens the Na channels).
So does the drug (topical) called Gelnique (blocks the release of acetylcholine). That drug is Rx'd to stop bladder spasms.
IF Bb's "toxin" IS arginine deiminase which looks to -> NH3 (ammonia) this can be countered by taking zeolite (contain clinoptilolite and are generally recognized as safe by the FDA (ACZ zeolite for example), or the Rx:Lactulose.
Google lactulose and see what it is and how it works.
However...are "toxins" actually released causing a "herx" OR is the number of once-infected cells that suddenly CAN die off too great for the body to handle -> sepsis?
Once Bb is "eliminated", the damaged (DNA damaged) infected cell can finally be destroyed (likely by all the ROS = reactive oxygen species = "free radicals").
Here is the far infrared treatment for fibromylagia:
"Patients received Waon((soothing warmth therapy)once per day for 2 or 5 days/week.
The patients were placed in the supine or sitting position in a far infrared-ray dry sauna maintained at an even temperature of
60 degrees C for 15 minutes, and then transferred to a room maintained at 26-27 degrees C (about 80 degrees F.) where they were covered with a blanket from the neck down to keep them warm for 30 minutes."
"RESULTS: All patients experienced a significant reduction in pain by about half after the first session of Waon therapy (11-70%), and the effect of Waon therapy became stable (20-78%) after 10 treatments."
PMID: 18703857
60 degrees C = 140 degrees F. Whoa...that would sure do a "number on" the circulating blood level of Na.
Catching on? If not because of "brain fog"...seriously consider OmegaBrite to reduce the brain inflammatory cytokines. The therapeutic dose is 3 capsules per day.
Believe me...that Omega 3 is really really needed.
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
quote:Originally posted by feelfit: Hot showeres, baths, = tachycardia/dysautonmia for me.
Feelfit
Me too, totally. Guess I should look into this. I often feel like I am going to faint and have to immediately lay down, even while still wet, after a bath or shower, and my heart is just pounding. I feel like I can't breathe.
I also can't stand saunas at all; or steam showers.
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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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Just to be clear for new comers, the "The Snorkle Thing" is a new term to me - it is not a treatment for lyme. Everyone here may have certain techniques that can help with symptoms and it's great to share some of those. I just don't want anyone new to all this this think "The Snorkle Thing" is part of treatment.
Generally, for lyme patients, it's best not to get too hot (we can not survive temps necessary to kill spirochetes) or be around chlorine. Although, with a personal hot tub, temperature can be lowered and being out-of-doors can help lessen the chlorine fumes. However, some lyme patients can't be around chlorine at all - even outside.
Still, moving about in warm water can be very, very nice. Some hot tubs use different kinds of chemicals but, in my dreams, I'd have a small pool with those fancy blue lights to replace the chlorine.
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I know you guys won't believe this but my last 2
soaks I did 2 cps. Epsom s and 2 cps. baking soda
for herxing pains/temp. I really stirred things up.
So yes I do know what you mean. Now my feet look
like I have dog pads. I guess I should get a pic.
-------------------- 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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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
This is important...PLEASE keep reading!
IF a herx is caused by die-off of the pathogen OR the pathogen PLUS the once-infected cells, the bath (MgSO4 + Na bicarb) is NOT a remedy for a herx!
While epsom salts are recommended to "soothe aching muscles"...MgSO4 PLUS baking soda (a bicarbonate) is quite another thing!
That combination is NOT a "detox".
In warm, not hot baths, you are replenishing some of the missing nutrients and this too can -> MORE die-off = herx.
You EXPECT a "herx" from abx., but freak/don't understand if a herx comes from applying "natural" things! We do indeed absorb things thru our skin.
The baths "help out" your own immune system. The body is too acidic (metabolic acidosis) which is countered in hospitals by "bicarbonates" - Na bicarbonate - usually IV.
The MgSO4 not only restores some of that mineral (Mg), but MgSO4 also looks to *partially block the release of acetylcholine*.
Acetylcholine and glutamate are released simultaneously (so I've read). Mg is one of the things that "gates" the NMDA (glutamate) receptors.
"Acetylcholine opens Na channels."
So the MgSO4 + Na bicarb baths = restore extracellular levels of Na and the bicarb makes you more "alkaline",
but
the MgSO4 prevents acetylcholine release and the opening of the Na channels...Na isn't "allowed to" go IN the cells. It stays where it is supposed to be...extracellular.
It appears our defense cells can only really work if our blood is as it should be...slightly alkaline.
We give Rx's to stop bladder spasms which work by *preventing the release of acetylcholine*.
Some lyme patients have bladder spasms - urinary urgency/frequency issues. That is pretty common...sooner or later.
It does NOT make sense that Bb's "toxin" prevents the release of acetylcholine when, in fact, docs Rx an anticholinergic to do the SAME i.e. prevent the release of acetylcholine to halt bladder spasms via a new topical drug called Gelnique (= Oxybutynin).
It doesn't look like Bb's "toxin" prevents the release of acetycholine.
The "toxins" do look to locate esp. to the feet...gravity issue? Or because our feet have so many little bones (we have a LOT of bones in our feet)?
An aqua-chi or befe "detox" foot baths DO help.
IF Bb's "toxin" released IS an enzyme called arginine deiminase this -> NH3 = ammonia!!!
An arginine deiminase is an enzyme that catalyzes the chemical reaction:
Is Bb "making" ammonia and then using it? That isn't "healthy" for our bodies or brains!
It looks like we need to counter NH3 (bind) with zeolite (Zeolites contain clinoptilolite and are generally recognized as safe by the FDA)
OR
perhaps the Rx: Lactulose (is a synthetic sugar, which does not occur naturally).
The first looks (Zeolite) to work via the kidneys while the latter (Lactulose) via the bowel.
About "colors" for a moment:
Re: "blue" lights (SAM pool lights are prettier and safer..colors can rotate or be stopped). Most pools simply have white lights.
Personal note: our grandaugher thinks the SAM lights are wonderful...as the pool changes "colors" (at night). She likes to stop it on purple.
The blue light gadgets to sanitize our toothbrushes or those put into a glass of water to "sterilize" the water making it safe to drink or to wave over our bed linens to destroy dust mites...are potentially dangerous to OUR skin and body.
The blue wavelength is the shortest and most powerful of the "colors". It is my understanding this is the wavelength that can trigger skin cancer - UVB. We need only a "little" of that wavelength which is likely why it is the shortest (deepest penetration) and not the most "abundant" wavelength.
About pools and chlorine:
I know a Florida lyme patient who cannot tolerate a "chlorine" pool, but CAN tolerate a chlorine pool that uses NaCl (salt) to generate the chlorine.
The bags of salt are poured directly into the pool water and when the water is circulated it comes into contact with metal plates that cause chlorine to be generated from the NaCl.
But...there always IS NaCl IN the pool.
We've had both kinds of pools. Our present one is a "salt" pool. I do prefer it.
Even young kids notice the difference!
Our skin feels sooooo much better after swimming in a "salt" pool.
But from an owner standpoint...those pools are harder to maintain.
Don't be envious...they are a very very expensive "work of art"! Very few Floridians use them on a daily basis. They are often primarily used when guests come to visit.
The lanais are nice...the entire pool is "caged" in screens...no bugs. It is like having a huge screened-in porch.
Heating pools(from about Oct -> May) is very very costly, no matter which way - gas, electric, or even solar (which uses additional electricity to circulate the warmed water).
Now about heat:
Heat...think of the soldiers who have to deal with being out in desert like high temperatures...
it reduces their blood sodium levels. This is WHY they are given salt pills.
K (potassium) is supposed to be IN the cells and Na (sodium) out...generally speaking.
But Bb prefers Na (and temporarily Ca)IN the cells.
Bb "moves away from KCl"
Okay...how do we drive K back in if Bb doesn't "like it"?
Tricky because:
"K deficiency resulted in a 36% reduction in the rate of lysine catabolism (breakdown) in kidney"
A K DEFICIENCY conserves lysine.
The body will upregulate aldosterone to do this.
At the outset of lyme, many persons have hyperkalemia (higher blood levels of K), but in time this will drop and hypokalemia can and will happen.
What's happening?
It appears Bb locks onto OUR lysine on our DNA and also impacts alanine via using an enzyme (arginine deiminase) to do this:
alanine with H2O -> L-citrulline + NH3 (ammonia).
But....this works in both DIRECTIONS!!!:
L-arginine + H2O <-> L-citrulline + NH3
L-citrulline...
"supplemental L-Citrulline has been shown to support ammonia incorporation and liver detoxification of ammonia"
HOWEVER!!!
L-citrulline converts TO L-arginine
and then nitric oxide.
If Bb is using (up) OUR L-arginine (and L-citrulline which can convert to L-arginine) in order to make NH3 (ammonia)this would reduce our supply of L-arginine -> NO
and the body will upregulate TNF alpha and IL1 Beta to increase NO.
I suspect NO is capable of destroying Bb as it can many other deadly bacteria:
I suspect it is gonna take a LOT and spaced out...
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
The hot baths make me really ill too. Makes my heart race and I feel like I am going to pass out.
I don't know much about dysautonomia although it was mentioned to me once by a cardiologist. He didn't do a tilt table test though. Does it even matter, I mean is there a treatment specifically for dysautonomia? I was on Tenormin for heart palps but it made my blood pressure way too low.
I think your body temp has to be way up there for a while to kill the ketes. If we could just induce a fever, wouldn't that kill them?
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Marnie,
Thanks so much for what you wrote about purifying the water. Very helpful (for my file, anyway. I really ope to swim again someday, somehow, somewhere . . . .)
CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
I nearly passed out from a hot Epsom Salt bath. It was horrible. Not for me.
CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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sutherngrl ,
We cannot possibly get hot enough to kill lyme without killing ourselves. Some have tried the fever therapies but there were many problems with that. (As in Italy & Atlanta - Heat treatments require specific medical supervision.)
Same with freezing. Spirochetes can survive forest fires and blizzards (housed only within a tick in a modest hiding place).
It sure took a while but I figured out that Warm baths, warm pools are best. Heat really knocks me out, too - for weeks afterward I'm just jell-o.
In addition to toxins being released and stress on the liver, many lyme patients just don't have very stable hearts as lyme can really affect the cardiac system. Heat stresses a heart tremendously, as well as the entire nervous and endocrine systems.
Lyme patients can often feel very bad from getting too hot. It's not necessarily just a herx but also body systems that have just been toasted, so to speak and commanded to work harder than they are able.
lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
do you have mcs, maybe its the chlorine?
Posts: 2905 | From New England | Registered: Sep 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- This is an old link that was linked for another hot tub thread. Just adding for future readers.
In addition to just the heat and over activity, the chlorine sure can cause a problem - sometimes, even just sitting by a pool or hot tub.
MCS is very likely related to elevated porphyrins and the liver's inability to metabolize as it should.
Chlorine and chlorine fumes can trigger porphyria attacks, too. Anyone dealing with KPU/HPU need to avoid all the other triggers that patients who have other kinds of porphyria must avoid.
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