trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
This is being pulled over from another thread:
I was troubled by one of your posts that mentioned that you feel worse after hot tub soaks.
I and you both know that you have a tick borne disease(s). But, I am also wondering if you don't have some MS stuff going on now too. (I know, perish the thought!) But, I have to mention it because of your feeling worse after hot baths.
In trying to figure out what was wrong with me, MS was looked at. And I knew that people with MS feel worse in the heat. That has never been an issue for me.
I'm sure you've considered the MS issue in the past. Do you think it could be part of your issue now?
Do others here on this forum feel worse after heat exposure? (Maybe you could post this as a new question).
So here are my answers:
I had a spinal tap done in 2001--and lots of other MS tests then and a few more recently, but not a spinal recently. Nothing begins to indicate MS except symptoms. BELIEVE you-me, if that Neurologist could have slapped an MS tag on me he would have!
Could I develop MS in 5 years since my last spinal?
I have always LOVED hot water. I still do. It is not that I FEEL worse after a bath, but SOME of my symptoms do get worse right AFTER the bath and return to norm again. Some of the burning under my skin gets worse. And of course, I get light headed and woosy, which makes my usual dizziness seem even WORSE. But things usually calm down within half hour of getting out of bath.
How would a MS patient feel after a bath?
I had that ONE bad experience with the BATHERAPY product, but dont normally feel worse and keep feeling worse after a bath. I love baths, lived on a hot springs "ranch" and take at least one a day and usually more than one.
I cant get WARM ENOUGH without them!
I am not heat intolerant and I spent a long time in the hot desert, as you know---so I would hope that I would know---I had a fellow teacher who had MS and her classroom was FREEEEEEZING compared to mine. I am much more COLD intolerant than heat intolerant....although, I must say I do hate to be uncomfortable in any temp and I HATE sweating.
But now I am a bit worried about the MS thing....I was living in an MS hotspot or whatever it is called for the last 6 years. Also lots of hypothyroidism in that area......
so much to consider.
anyone else?
Posts: 1950 | From New Mexico | Registered: Sep 2001
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posted
I have more fatigue and an increase in some other symptoms (herx) on days that I take a infrared sauna- I have just recently had the full work up and had MS ruled out.
Again- my insurance duck was really pushing for it to be MS.
It was my understanding that Lyme doesn't like heat and that the heat is killing them similar to the abx.
I thought that the sauna was good as a way to get the toxins out and to also kill off the Lyme and I should do them as much as I could tolerate.
Other opinions?
-------------------- Lucy Posts: 342 | From Hawaii | Registered: Nov 2005
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
I don't know what thread this subject was pulled from.
I doubt this is helpful except for polling purposes but I am completely heat intolerant.
I can't tolerate hot packs or take hot baths or showers. On the off times I go into a friend's hot tub the water can't be higher than my body temp which is less than 97.
Anything hot makes me nauseous, headachy, increases pain and triggers neuro stuff. For me it's no herx definately a flare, I get no benefit down the road from being exposed to heat.
(Those ice vests they make for MS patients sound really good to me.)
Interestingly, to me anyway, is I always feel better when, or after, runnning a fever but raising my temp from the outside works reverse.
My intial diagnosis for Lyme was done as a rule out for everything that wasn't. (Granted this was 1993 and the first thing they wrote down was demyelanating(sp?) disease while doing the testing.)
I had a lumbar puncture and MRI of the brain and neither were consistant with MS. I can't remember what all else they did but MS was definately ruled out first thing.
My personal opinion is MS actually is lyme and co, anyway. So I don't ever worry about it. I got what I got and eventually will find the right treatment for it.
ps. If I've missed the point or this post doesn't belong here please let me know and I'll remove it.
pps. I do think there's a good possibility that my heat intolerance is from yet untreated Babs.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
Great teplies so far!
The post was pulled off of my thread about coinfections...timaca had asked me this sort of as an aside. We both thought it should have it's own thread.
I am thinking everyone is gonna be different about this as they are with almost everything.
However, I did still want to put it out there for polling.
Also I was wondering if you COULD develope MS in 5 years post spinal tap.
AND what does an MS patient feel like during and after a hot bath?
Posts: 1950 | From New Mexico | Registered: Sep 2001
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TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
This could be an autonomic nervous system problem such as NMH or Orthostatic Hypotension, both of which aBhore heat ( especially hot baths) Lyme loves to cause this problem.. sia especially.
I have Orthostatic hypotension... woozy after baths, dizzy, cant think in head, etc. It gets relieved alot when I lay down. My heart races after a hot bath, etc.
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
trails, you said
quote:And of course, I get light headed and woosy, which makes my usual dizziness seem even WORSE. But things usually calm down within half hour of getting out of bath.
That described me quite nicely during this last relapse. But these days I feel relaxed and loose getting out of the bath.
Interestingly, I recently visited a podiatrist about my Morton's neuroma, if an orthotic might help keep it from flaring. He advised me to start with alternating warm and cool foot soaks to treat inflamation, ending with cool.
So I tried it (used to do it all the time to treat ankle sprains), and noticed the bottoms of my feet were pretty itchy after. I was sitting at the computer for about 30 minutes, then tried to get up. The soles of my feet were killing me! Nerve pain, yikes! Guess I gotta check with the doc before I try that again,
Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
Really shaz? be careful!
I have always gotten woozy when I stand out of a bath...isnt that NORMAL? Like I said, I lived on a commune with 16 hot springs and that was normal for everyone---especially people who were NOT used to hot water.
I have symptoms of NMH and the like, but I dont actually have those...when I have been tested my heart and blood pressure decide to behave for the docs so I look like an *** . But I have had the blood pressure go in opposite directions than it is supposed to go when I go from sitting to standing.
mostly that was babs flare/herx.
Posts: 1950 | From New Mexico | Registered: Sep 2001
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posted
When I get out the bath I feel extremely weak and tired, I just go to bed and I feel fine. Like someone else pointed out above, these critters HATE hot water, so it probably stirrs them up and makes them go crazy or something.
Chris.
Posts: 263 | From UK | Registered: Mar 2006
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
For what it worth ,I have been doing hot baths for years. it's hard for me and every minuet in the tub is very excruciating. Specially the last 10 minuets,
My hubby does hot baths and say the whole experience from start to finish is relaing. But he doesn'thave lyme.
I do have heat intolerence. And I often herx afterwards,specially when I am on ABX.
But as hard as it has been to "stay in" the whole time, I have to add it has been good for me in the detox area too. About the only time I break a long sweat.
I feel that BB hates a hot body temp. Some of the feeling I get durning and after maybe because bb is screaming no?
Or because like smell and sound and light I have intolerence as well, because of the diseae itself?
The hot baths don't always make me feel drained and I wonder why.
Did I not have a die off? Did I not release alot of toxins and have not have a toxin release reaction?
Overall though , when I have muscle pains and joint pains , a hot bath is the only thing I have found that makes me feel better.
Everyone's so different here. There are no absolute standards for everyone.
I think you just have to try and find "what works for you"
Hope this helps.take care dana
Make sure to talk everything over first with your LLMD
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
I have trouble with the heat on while driving.
when i had my first episode in august, i had to have the AC cranked up. Before this i was always cold. So this was something new.
Then the shower would make me dizzy and woozy like someone described.
Now, i just get tired after a shower some of the time.
Im not looking forward to the warm months ahead...i have no clue how my body is going to react.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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posted
Before the discovery of penicillin, heat was one of the staples of treating syphilis, which we all know is another spirochetal infection. So it's very likely that depending on how hot your bath/shower is, how hot you get from it, and how long you stay that hot, that you are making the Bb uncomfortable, at the very least.
As I posted here on another thread, I believe I had a huge herx earlier this year when I purposely gave myself a very long, very hot bath. I was "out to get" Bb. I wasn't feeling well and decided that I would combine a detox bath with as much heat as I could tolerate and get an increased "kill" if I could (that is, increased over that provided by my abx), and although my LNP may not believe it, I believe I succeeded.
Bb is killed at a temp of 103-104. (I forget the exact #) It's virtually impossible to get our body temp that high without killing ourselves in the process, but I decided to get myself as hot as possible, and since I've always liked hot baths, the prospect wasn't bad.
Keeping my bath temp at about 108-109 minimum, I got my body temp up to 102 before reaching my limit and getting out. That took about a half hour. During the same time, I realized that my hands, wrists and arms are the thinnest of my extremities, and contain no vital organs, so I felt that if I kept them submerged as much as possible, chances are likely that their "thinness" would allow the core of these extremities the chance to heat up closer to the ambient water temperature than the core of my torso would get. In other words I believed I could raise the core temp of my hands to at least 104deg by keeping them submerge in 108-109deg water.
Upon getting out of the tub, I felt a little drained, as I think any hot bath does. The next day, I felt great. The aching I'd been experiencing was gone, and I felt really good. But the 2nd day after the bath, all hell broke loose, and my joints started aching, my eye drooped, brain fog and fatigue set in, it was the classic herx. But then it kept getting worse.
Eventually my hands and wrists ached so much that I couldn't sign my name without being in pain. I couldn't walk without limping and looking and feeling like I had MS (at least what I thought MS must feel like). This went on for at least a full month without any sign of improvement.
I began to wonder if I'd damaged myself to the degree that has been described by Gigi (I think), who knows someone who now have MS permanently because of treating themselves w/heat. The uncertainty of not knowing is really scary.
It wasn't until I started drinking organic apple cider vinegar and honey that I started feeling better. I think it must be great for detoxing and now I'm hooked.
While not yet 100%, I'm now feeling the best I've felt in over a year. I believe that the big herx that started the 2nd day after my hot bath was due in large to a big kill caused by the heat. The best part is that my head has been clear or mostly clear for at least 3 weeks running.
However, I wouldn't recommend everyone to run out and do this without understanding all of the risks involved, and it's more than what I just described above. I felt I was more qualified than the average person, having been a clinical pharmacist and having years of experience in a hospital setting.
Besides the severe herx which comes later, heat will increase your heart rate. Your heart rate must be monitored closely along with monitoring your body temperature while in the bath. If you have any predisposing medical conditions, esp. heart disease, you should probably not consider doing it at all. You must have water handy to drink during the bath to avoid becoming dehydrated. Before getting out of the bath, it would probably be a good idea to rinse off with a cool shower, both to rinse off toxins and to start the cool down process. After the bath, you must drink plenty of fluids, and I would recommend detoxing w/my favorite organic ACV and honey on a daily basis.
I'm certain that Bb has a huge effect on our metabolism so we have to be extra careful about the stresses, including heat, that we take on.
Sorry to ramble on. I am not an MD, and this experience of mine, while accurate to the best of my knowledge, contains educated speculation and should be regarded as anectdotal. Nonetheless, I wanted to share it with you because I do feel better.
BTW, I took another hot bath this week for the first time, and my wrists ached after getting out of the bath, but felt better the next day. Almost a week later, no herx, and I'm feeling even better.
Please feel free to email me if you have any specific questions.
Patti
Posts: 449 | From Pasadena, CA, usa | Registered: Aug 2005
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posted
Patti- I am a huge organic apple cider vinegar fan as well. I had originally started taking it for my joint pain prior to finding out I had LD. I didn't know it helped with detox, too.
Trails- I was a commune baby.
It seems that many of the things I stumbled on out of pain management need are helping with LD.
I have started to alternate the days I do my saunas, do them in the evening and make sure that I don't have something big on the agenda the next day. I think they are good for me in the long run, they feel good while I am doing it- very relaxing but just drain me after.
I have recently moved from Ohio to Hawaii and have found the lack of winter cold is HEAVEN. The bitter cold was so hard on my joints and locked up my muscles. My pain is less here.
All very individual.
-------------------- Lucy Posts: 342 | From Hawaii | Registered: Nov 2005
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posted
I tested postive for neurally mediated hypotension on the tilt table test. However, I love hot baths, hot showers, saunas etc.
I find them helpful, relaxing and pleasurable. But I am very careful getting out just in case.
Posts: 925 | From California | Registered: Sep 2004
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-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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WildCondor
Unregistered
posted
The heat intolerance, and feeling worse after a bath can easily be from Lyme disease induced Neurocardiogenic Syncope, Neurally mediated Hypotension (NMH). Not only does it screw up the heart rate and blood pressure, but it can make you feel woozy, weak, dizzy, lightheaded, anxious, depressed, shaky, hungry, thirsty, and faint. These symptoms can happen at other times too...standing in line at the grocery store, a warm day, any time during pain, stress, lack of sleep, caffiene, exercise etc.
The cause of this is the Lyme disease bacteria inflamming the vagus nerve that leads from the brain to the heart.
I have it and its under control with Atenolol/Zoloft/Xanax/magnesium, but it comes out and rears it ugly head when I eat the wrong things, don't sleep enough, or am under stress, but heat is the big one. Don't go to California in August, I learned! A Lyme literate cardiologist can check for NMH by doing a Tilt Table test.
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trueblue
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Member # 7348
posted
quote:Originally posted by WildCondor: The heat intolerance, and feeling worse after a bath can easily be from Lyme disease induced Neurocardiogenic Syncope, Neurally mediated Hypotension (NMH). Not only does it screw up the heart rate and blood pressure, but it can make you feel woozy, weak, dizzy, lightheaded, anxious, depressed, shaky, hungry, thirsty, and faint. These symptoms can happen at other times too...standing in line at the grocery store, a warm day, any time during pain, stress, lack of sleep, caffiene, exercise etc.
The cause of this is the Lyme disease bacteria inflamming the vagus nerve that leads from the brain to the heart.
I have it and its under control with Atenolol/Zoloft/Xanax/magnesium, but it comes out and rears it ugly head when I eat the wrong things, don't sleep enough, or am under stress, but heat is the big one. Don't go to California in August, I learned! A Lyme literate cardiologist can check for NMH by doing a Tilt Table test.
Thank you, Wild Condor. I never saw this described this way before. I though it was just me.
ps. don't come to Florida anytime but in the winter.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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WildCondor
Unregistered
posted
Here are some links to websites with information about Neurally Mediated Hypotension. Keep in mind that Lyme can be the cause in your case, even if it is not listed in these particular articles. There are also similar names for the same condition:
posted
I love hot baths and I soak for a long time which really heats me up and then I have to run cold water in to cool me down a little before I get out.
A few years ago I loved cold weather and was incredibly heat intolerent, now I'm the opposite. I thought it was a by product of getting a little older but now I think it has to do with the Lyme/Babs.
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