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Posted 11/23/2012 7:23 AM (GMT 0)
Hello everyone, my name is Will and I have been struggling with Lyme for years. Here's a bit of my story:

I was diagnosed in 2010, but I did a very bad job at treating the disease. I never took my medicine right, and for 2 years I struggled with symptoms on and off. In the very begging of September I had a very stressful event occur to me and ever since then I have been fighting Lyme. I was off antibiotics for about 5-6 months before this incident occurred as well.

It's been a tough time for me, but a few weeks ago my Lyme Doctor told me I have Bebesia (based off my symptoms). I'm really just looking for some advice and possibly some solutions to my current symptoms that are taking away my life. I'm so scared I'm dying and all I can do is lay around in bed all day.

My current symptoms:

- Extreme fatigue
- Heart palps. flutters, skips.
- Chest Pain (sharp and throbbing)
- Numbness on the left side of my body
- Chest tightness
- Chills
- Trouble breathing at times
- Loss of appetite
- Muscle pains in my arms and legs
- My heart beats so hard my body shakes
- Trembling
- Restless leg
- Blurry vision
- I get the sensation my heart has been replaced by a big rock

I was on Monodox for about 2 and a half months (September-November), but I am now on Zithromax and Maleron.

I've been on it for a week now and I have only gotten worse. I know this is probably a herx reaction, but it still worries me. I get symptoms of heart attacks and strokes, yet I'm so young! I was just wondering what you guys do to help cope and get through your symptoms.
Posted 11/23/2012 12:21 PM (GMT 0)
Hi Will and welcome!

First, please excuse my typing as I am away from home and using a laptop (not used to laptops).

Sorry you are having a difficut time. And yes, stress alone lowers one's immune system which in turn makes a person feel worse, not only with lyme but any kind of illness.  Yet sometimes stress can not be avoided.

I don't think you will get a heart attack or stroke even though it feels that way.   What can you do to feel a bit better?  Learn about detoxing.  In the sticky thread on top called "New to Lyme?  Start Here!" there are instructions on how to detox.  Believe me, when I first read about people detoxing, I thought they were nuts!  I said to myself "what does detoxing have to do with lyme bacteria?"  Made no sense to me.  Ha, ha, little did I know back then...

Lyme bacteria dies by itself (yes, even with NO medication) and after the bacteria die, it leaves toxins.  Toxins cause people to feel sick which they don't need on top of already feeling sick from the lyme. 

If you decide to start the detox baths, start really slow (make sure the bath water is warm, not hot).  Only stay in the tub about 10 minutes.  Drink lots of water during the detox bath.   Dry skin brush before getting into the bath.  Then there are foot baths.  Very helpful!

I can't say much about abx since I don't believe that they help with chronic lyme.  I got well using alternative medicine.  You may want to look into that.  There are several protocols that many people use and they work!  I am living proof of that. 

And talk to us, we are here for you okay?   I believe the only people that truly understand lyme are the people that walked that road. 

Wishing you the best,

Denise

Posted 11/23/2012 3:28 PM (GMT 0)
Hi Will!
Welcome to our forum! I'm so glad that you found us! We have such a wealth of information and some of the friendliest members around! We just love to share info around here! smilewinkgrin

If you haven't yet, it would be really good for you to read through the thread at the top of the forum titled, "New to Lyme? Start Here!" as Deejavu suggested - as it's packed full of important information, symptom lists, informative links, helpful pdf's and more.

As Deejavu has said, it would be best if you started detoxing. Here is an article that you can read about the need for detoxing and how it's the toxins from the bacteria dying that drive our symptoms:
www.encognitive.com/node/5768
Also as Deejavu has said, please do start off slow - only warm water and don't stay in more than 7 - 10 minutes - or less if it makes any symptoms worse. I would herx horribly when I first started detoxing! Even if it doesn't help your symptoms right away, you need to continue to detox, as your body may be so overwhelmed with toxins at this point that it may take a while before you really start to 'feel' the difference, but your body will know!! You'll find that most everyone here will recommend these detoxing methods.

Please do be careful with those heart symptoms. I know of a couple of people that have had some serious heart problems from Lyme and/or Babesia. If you really feel like you need to go to the Emergency room, please do! Better safe than sorry! Most people don't really have heart attacks and strokes - even though they have the symptoms (darned infections!!!), but some do.

It definitely sounds like you are dealing with not only Lyme, but Babesia as well. There could also be other infections at play, but that can come later, just be aware of this.

You will need to really dedicate yourself to your treatment this time, as by not sticking closely to your treatment you now have to deal with chronic Lyme, which is much harder to put into remission. If you are willing to really dedicate yourself though, you should be able to eventually have at least most of your life back!!
Posted 11/23/2012 8:17 PM (GMT 0)

Traveler said...
Hi Will!
Welcome to our forum! I'm so glad that you found us! We have such a wealth of information and some of the friendliest members around! We just love to share info around here! smilewinkgrin

If you haven't yet, it would be really good for you to read through the thread at the top of the forum titled, "New to Lyme? Start Here!" as Deejavu suggested - as it's packed full of important information, symptom lists, informative links, helpful pdf's and more.

As Deejavu has said, it would be best if you started detoxing. Here is an article that you can read about the need for detoxing and how it's the toxins from the bacteria dying that drive our symptoms:
www.encognitive.com/node/5768
Also as Deejavu has said, please do start off slow - only warm water and don't stay in more than 7 - 10 minutes - or less if it makes any symptoms worse. I would herx horribly when I first started detoxing! Even if it doesn't help your symptoms right away, you need to continue to detox, as your body may be so overwhelmed with toxins at this point that it may take a while before you really start to 'feel' the difference, but your body will know!! You'll find that most everyone here will recommend these detoxing methods.

Please do be careful with those heart symptoms. I know of a couple of people that have had some serious heart problems from Lyme and/or Babesia. If you really feel like you need to go to the Emergency room, please do! Better safe than sorry! Most people don't really have heart attacks and strokes - even though they have the symptoms (darned infections!!!), but some do.

It definitely sounds like you are dealing with not only Lyme, but Babesia as well. There could also be other infections at play, but that can come later, just be aware of this.

You will need to really dedicate yourself to your treatment this time, as by not sticking closely to your treatment you now have to deal with chronic Lyme, which is much harder to put into remission. If you are willing to really dedicate yourself though, you should be able to eventually have at least most of your life back!!

I will definitely look into the detox bath, I'm desperate at this point.

Also I was at the ER today due to my chest feeling paralyzed and numb and chest pains. Everything turned out okay though so it's probably just the Lyme interfering with my nervous system or something.

The doctors gave me Cymbalta and Ativan but I'll be asking my LLMD what he thinks I should do.

Also I do not think anything bad like a heart attack or a stroke will happen to me because I am only 17 years old and have been treating the Lyme for 3 months now. I really hope I see some improvement soon, my parents can't take much more of me and are thinking about putting me into a psychiatric hospital.

Any other advice you have is gladly appreciated.
Posted 11/23/2012 9:18 PM (GMT 0)
Do you need information about how Lyme and Bartonella can cause psychological issues? Let us know what kind of info you need, most likely we can find at least some of what you need.

Do you need links to articles that explain the issues with theses infections? Links to show that heart issues are very much an issue?

To just say that 'any other advice is appreciated' leaves a lot of room. I have saved links to a whole lot of info about these infections!!
Posted 11/28/2012 12:10 AM (GMT 0)
Hi Will,

hang in there! the fact that you are already looking for information and answers and that you are young are all in your favor! You can get well! Many have and even after many many years. I am about 80percent better now after 17 years of chronic lyme. Due to a recent treatment change.

In an nutshell, the neurotoxins from the lyme bacteria, co infections, including fungus and yeast all can cause neurological problems...toxins pass through the blood-brain barrier.

It is very very common and can affect people in different ways. You will need to detox a lot (we all do) and get good treatment for the infections. For me, and many others, treatment other than antibiotics was crucial.

I also have had heart issues (lots of palpitations, flutters) and neurolyme symptoms, and many of the other symptoms you list.

My advice, to be blunt,(and after seeing the gamut of lyme specialists from western medicine, mayo, integrative, eastern and naturopathic... for many years)....is to get yourself to the Hansa Clinic in Kansas. (I don't think I am supposed to endorse a particular place on this forum, but I can't help it! :)
Sooner rather than later as you can thus start getting better quickly, especially since you say your parents are thinking of a psychiatric hospital.

Google "Hansa Center" for more info. And you can search this site for my posts and others from going there. They are ahead of the game in treatment and diagnostics and specialize in hard to treat cases. The doc there has been treating lyme for 15 years or more, I believe. He is amazing.

Good luck!! And do email me if you want to.

Cheers,
Nan
Posted 11/30/2012 9:53 PM (GMT 0)
Hi Will,

I am so sorry to hear of your troubles. Goodness, 17! You are still a baby - and I mean that in the nicest possible way. I'm I suppose still a little young at 27 and I was still thinking " I am WAYyyyy too young to feel this terrible." I've really only had symptoms for a month and a half now. When my bloodwork checked out, I just tried to ignore the fact that symptoms were getting worse...and worse...and worse. I knew it - but my bloodwork was OK - thyroid, kidney, liver WBC count. And when I started to get chest pain that really sucked. And then I woke up in middle of the night with my wrist hurting and I knew at that point it was not in my head ( I sleep like a Rock). My PCP is still not convinced that it is Lyme's but I am going to an LLMD to find out for sure. The one sound piece of information that she gave me is completely logical and has kept me from having more panic attacks and more visits to an urgent care center. She said, "Time is your friend, especially with health - whether it is two steps forward or two steps back - look at that as a very good thing." And really, it's true. I thought maybe I had mrsa in my bones or....maybe some time of cancer thing that started wreaking havoc...or God only knows some wierd Hanta virus thing carried by a mouse. BUT if I had in fact, had any of those terrible things - I would be in the hospital by now or worse. Once I did realize this and take it to heart; it makes things easier. I still get the pains but the abx have noticeably helped which makes me feel better. Small steps can still add up to one great journey (I know, I'm short and therefore have to take baby steps everywhere I go) smilewinkgrin . I missed some of my meds too BUT I've been about as proactive as I can be to take care of this "thing" whatever it is. You are young - your body is full of healing power - but it will take some time. Follow the perscriptions and read literature or be on forums(like this one). Its always nice to hear when other people feel the same way/same symptoms as you - you realize you aren't crazy and you can get through it.

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