Would you elaborate on this symptom please?

Thanks,

Karen

When I first got lyme (8 days after removing the tick from the back of my neck) The first thing was this burning on my upper body and I could not be out in the heat, it made it so much worse (now my body loves the heat very strange). Then I got the flu and it was the end of July and in Chicago its HOT...Then the knee and neck pain started, I could not walk without a brace on my knee. I just felt like I was dying a slow death.

Went to the doctor he did not play around put me on abx's and I was on them off and on until mid December (I'm allergic to 99% of abx's on the market)...I'm seeing an allergist next month to address this, my mom and sister are the same way, it sucks when you get sick and can't take anything.

After I got off the abx in Dec I felt bad for about a month, then slowley I started to feel better and better. Then my mom was in the hospital and the knee and neck pain came back for about a month, then gone again. While in Mexico the heat and salt water from the ocean made my body feel like 100%, I had no pain whatsoever, I came home and within one week I have the mild knee pain back...But I feel good again...

So is detox a myth, I have no idea, but if it makes you feel good, do it, if it makes you feel bad, don't. I put Lavender epson salt in the bath and sit for about 1/2 hour twice a day...I also go into the hot tub twice a week (my doctor gave me an order for this and I go to a clinic for this, and my insurance pays for it) plus they work my knee and neck)...Its wonderful...Again it might not work for you.

I don't think anyone person with lyme is the same, pills, no pills, natural, yes, no, I don't think anyone can give a forward answer to it, its a total shame lyme can do this to a body.

I feel I'm in remission, but when my stress level go's high I know its still there, so I try and stay stress free, ya right...lol

What are you doing for your lyme?

Julie

Peace,

Karen

Id find a Dr thats familiar with the unfortunate fact that tests are USELESS--you can have Lyme and coinfections and be flat out negative --its more rare to NOT have Lyme and have a false positive

as long as you were positive on ONE test and have a certain symptom pattern Id find a Dr who is more experienced with Lyme to guide you.

If you were asking about heat symptoms--theyre different for everyone but in general many feel an "air hunger" like you can breathe but youre not getting enough oxygen--if its too warm you crave cooler air and find you go to the door or window for fresh air if its cooler outside

Heat can also drain you making the fatigue worse. For some it increases the chest pressure and muscle aches--as if youre dragging around in a heavy suit of armor.

With cold you often feel colder faster than others and keep sweaters around and turn to gloves quicker than others do.

as for dysautonomia and heat--it worsens the feeling of passing out ( a sudden wave of internal flushing and sudden waves of weakness...sometimes eyes sparkly and things go black for a second or 2...for some that precedes an actual fainting)

the waves will be worse, more often and longer...blood pressure can either rise or lower and usually pulse will be very high

any "stress" will make dysautonomias worse--and not just "emotional" type stress--any "physiological stressor" even standing up or sitting up instead of lying down for many...too warn showers/baths are considered a "stress" as is too hot or cold ambient temperature ( environment)..anything that "normal" people automatically adjust to is harder for dysauto's

if you were asking about other symptoms, sorry...please ask again with specifics

and make sure youre also tested for ALL coinfections ( the little stowaways that piggy back with the Lyme and can cause even worse stuff!!)

IF you need a list ( and it grows all the time) : Babesia, Bartonella, Ehrlichias/anaplasmas; tularemia, Q fever,mycoplasma, STARI ( I may be blanking here so maybe others can add to the list??)

good luck

Finette

I don't want to get into arguments on this site at all. I am here to share my story of recovery and to offer hope. Others that are following in my footseps are on their way, too. Others that are going a different way are getting better, too. It's a personal choice. I believe most people have enough common sense to do what is right for them and it is their ultimate choice (hopefully they will get themselves informed). So, to infer that I'm telling people what to do and giving them false information that will potentially hurt them is wrong. I have a right to inform people how I got better, especially when asked. They can then take the information and make their own choices.

Sorry about your whole 'sordid' past and struggles with Lyme. We all have a story, some are worse than others , that's for sure. I wish you and all Lymies all the best, I really do. In fact, that's why I'm here. I'm better, but yet I continue to stay. I stay to help and I stay for hope.

I think we are all in this together and are here to bring each other up, to share what works and what doesn't, to cry when we hear of another member's struggles, and to laugh sometimes, too.

So, to pick on me because I said I use fir sauna to detox, herbs for detox, etc . has left me baffled. I guess I should have said 'to help ' detox (which is exactly how it's worded in most of my posts).

Peace,

Connie

as for my post--it was a summary of the ARTICLE I cited--so the statement about "tap water" was from that source--not what I do or do not do.

sorry you misunderstood--thats why I try to post the site Im citing from. So you and others can read it in entirety.

as for other's common sense and/or ability to find out stuff--unfortunately the more common occurrence is a person desperately grasping onto some quick cure or some story of " this can help you" and most do NOT bother to do the homework--it remains for sites like this to provide complete and current info so that rash and possibly dangerous decisions arent made

I wish more did do that--they dont--as evidenced by the sheer numbers of HOURS I have to spend doing research and getting valid accurate info out to others!!! Id rather be doing something else, believe you me.

I agree that this site, like others, is good for support but its also used for information and we all have a responsibility to make sure that it stays accurate and complete in addition to the sharing!!

again I wasnt picking on YOU nor on what you do to feel better--I simply did not wish others to read that and think that removal of toxins by many means is even possible.even if "helped".. Its like someone saying that dancing naked under a full moon will cure cancer--maybe it will IF you truly believe in it ( placebo/mind over matter effects) and then that person can certainly post that that was what made her get well-- BUT if she said that the dance killed cancer cells due to exposing her body to the moons rays??? Id first investigate HOW and WHY and then if it was impossible--Id say that too--Id also add " Dance and if it makes you feel better--great, but the moon's rays cannot possibly kill cancer cells"

Please dont take comments about INFORMATION in a post to be a personal attack--its never meant that way ( and unfortunately I cannot control the way you/others take things--I can only control what I mean to say/do)

Finette

as far as detoxing goes. I know many people who feel it has helped them, myself included. I know of someone who sees one of the top lyme docs and he doesn't believe in detoxing, he says your body does it on it's own. So for the longest time she didn't detox. Then she tried activated charcoal (you can get over the counter, and pm me if you want more info before actually taking this), and it stopped a herx in it's tracks basically. It binded up the toxins.

Everyone here should realize we are not lyme doctors, and we are only sharing our experiences , and knowledge.

Karen, if you need a lyme literate doctor please PM me. You don't even need a positive test to have lyme. Your body could be under such attack that it's too weak to even make the antibodies. Lyme is usually treated by a clinical diagnosis (meaning because of symptoms)

I'm all about a detox, especially for people like us. I don't want to start anything with you, Fin. But your comment "getting valid accurate info out to others" is still what YOU BELIEVE to be true. I just can't believe that detoxing our defunct systems isn't a good idea. My lymph system was completely sluggish, now I'm fighting things off again. Without the detox, I don't think that would have happened. I don't want to have to go back and forth with this - I just want people to have both sides.

I feel better in heat too. Julie you should move down south where the sun in always warm and our pools are saltwater and no one swims in water colder than 90 degrees!

When Texas people heard I use to swim in 75 to 80 degree weather in 60 degree lake michigan they thought I was nuts! Everyone thought that would cause hyperothermia! LOL!!!

Fin: I suggest Chicago if you like it cold...LOL!!!

I would move in a heart beat if I could, I love the HEAT, Love it...I have to disgree with Fin, dexoting helped my pain by 110%...again, while in mexico the salt from the ocean was like GOLD to my body....When I first got lyme, yes the heat I could not be out in for two weeks, then my body LOVED it and still does...

I fully agree with Jamie, what works for one may not work for another....

J