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What would happen if I stop treatment?

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Posted 8/31/2012 11:05 AM (GMT -8)
I'm tired of being sick, is it the meds and I am herxing all the time. What would happen if I quit all treat? Does lymes kill ?
Posted 8/31/2012 11:23 AM (GMT -8)
You will be incredibly miserable and your body will rot away.

IF you aren't happy with your current treatment, try something else. There is something out there to help.
Posted 8/31/2012 12:08 PM (GMT -8)
Thx for the vision. I'm am just having a really bad day but I trust this doctor.
Posted 8/31/2012 12:22 PM (GMT -8)
Then please don't stop your treatment, Biggs!! Although it's not likely one could find Lyme disease written as the cause of death, it does kill!! It will continue to infect each organ, joint, tissue until they are all so messed up that they can no longer function. I've lost 3 body organs and my teeth due to not recognizing my infections soon enough.

Hang in there and be sure you are doing all you can do to ensure your treatment will work - detox soaks, drinking plenty of water to keep toxins flushed, dry skin brushing, exercising if it's tolerated, and eating very well, besides taking your meds!

If you are having a lot of issues with being 'down', or depression, please talk with your LLMD about this - they should prescribe something, as depression is one of the symptoms of Lyme, and let's face it - being sick all the time is depressing!
Posted 8/31/2012 3:16 PM (GMT -8)
Oh, Traveler, I am so sorry for what you have gone through.  You are a blessing to this forum.

Patty  xo

Posted 9/1/2012 2:21 AM (GMT -8)
Morning Biggs,

I already know that many here won't like my response but that's okay.  It simply just does not make sense to me putting poisons in one's body to kill other bacteria.

Some people feel fine taking abx, other's do not... And why is that?  It's your body telling you this is "not good!"...  And I must tell the truth:  I know too many people who died from taking abx (oral and IV), one of them was a nurse.  Some of them I knew personally and I still cry for them. 

Biggs, what do you have to lose by trying alternative medicine?  Abx will always be there...  Learn, learn, learn..  Before you even consider it, read books written by famous lyme doctors.. 

A friend of mine said that she took antibiotics for so long that it was doing damage to her organs, wrecked her body, etc.  She switched over to alternative medicine along with heavy detoxing and a healthy diet and she got her life back.   She didn't tell her LLMD what she was doing because of fear, but it was her body and her life so she did what she felt was right for her.   She no longer suffered from taking abx. 

Again, everyone is different and I believe that person should honestly "feel" their treatment protocol is "right" for them.   As the old saying goes "when in doubt, throw it out"... 

Hang in there,

Denise

Posted 9/1/2012 3:04 AM (GMT -8)
Hi again Biggs and everyone else,

Another thought...  Ask your pharmacist what your abx are made from, see if she or he will tell you...  If your pharmacist does tell you, write it down and research the ingredients and then you will know why the abx is making you feel so sick.

If I learned anything from all the years I had chronic lyme and all the researching I have done, it's that people tend to think our bodies are stupid... Oh no!  It's the other way around, our bodies let us know when we have a headache, why is that?  Our bodies can heal cuts by themselves, why is that?  Because our bodies know what to do.. 

When we get sick our bodies need some extra help to boost our immune system and to open up the detox pathways...   And when we give our bodies that extra help such as really good supplements, changing our diet, and detoxing (dry skin brushing, detox baths, etc.), then our bodies can and will kill off lyme bacteria on it's own... 

Honest?  I think pharma is just big business.  I was shocked to read the cost or mepron, etc.  

Do your own research, become your own advocate..  If you need help in researching or any other help, please e-mail me...  Don't take the medicine because your LLMD says it's right..  It's your body not your LLMD's body.

Denise

Posted 9/1/2012 3:39 AM (GMT -8)
I have been on antibiotics for 2 months now and although I have experienced some improvement especially with my neuro-problems,I,too feel that I am ready now to take a more natural approach.
I agree with Denise, how can bombarding your body with antibiotics for months or even years make you healthy?

Athough I have coped with the antibiotics fairly well,my digestion is begining to suffer and I feel at this stage I would like to take a look at alternative treatments.herbs.homeopathy,whatever is out there.I can always come back to more conventional treatment should I wish.

The most important thing for me is to find a way that minimizes pain and stress because these factors inhibit progress and healing.

Of course.not everyone reponds to treatment in the same way,it is just the decision that I have made.
Posted 9/1/2012 4:57 AM (GMT -8)
Denise, did you ever take antibiotics for Lyme treatment?  How long were you sick and how long did it take to get well.?  Did you have neuro symptoms?

Patty  xo

Posted 9/1/2012 6:29 AM (GMT -8)
Thank you for your kind words, Summer16, but we almost all of us have come through a really tough time to get here, where we can learn so much of what we are going through!

Denise was a life saver for me - she taught me how to detox - even coached me through it when I couldn't detox at all without herxing, which taught me soo much about having a heavy load of toxins and how it can not only stop the healing, but make things sooo much worse! This is why I always sound like a broken record! LOL!! Detox, detox, detox!! As I'm writing this, I have my feet in Epsom salt/peroxide soak! It's really that important!

Abx are great if you catch Lyme immediately, but after that I believe it has a lot to do with how overwhelmed the body is by the infections and toxins, so if you can get the toxin load down far enough, the body has a chance at healing and herbs help this. Abx only attack the infections (which actually increases the need for heavy detoxing), they don't help the body heal after that. This is why many LLMD's are now incorporating herbs into their protocols. The big key is finding the protocol that your body is willing to work with.
Posted 9/1/2012 7:38 AM (GMT -8)
It's amazing how a forum can make you feel so supported. I appreciate all your responses. I appreciate so much each and everyone of you taking time to write such detailed responses.

I am going to look up Dr J protocol. ( forgot already haha)
Do natural products kill the lymes or just make your body stronger. Will the get the cystic form? I will do my research too. Is that book
10 things I should know about Lyme worth buying?
I pray everybody has a healthy productive day!
Posted 9/1/2012 7:52 AM (GMT -8)
Hey Biggs,

I'm so glad that this forum has been helpful to you!! That's why we are here!!! This site is what it is - a really great place!! - because of our awesome members!!

The more you read and learn the better able you will be to help your body to heal. Try looking in your library (or do an inter-library loan) to help so that you don't have to have your own Lyme Library. Speaking of which, there are two sites that are attempting to have a Lyme Library!! One is called Lymebrary (www.lymediseasedigitallibrary.com/). You do have to register, but it's a free site. Another one where you can find articles about Lyme is here:delicious.com/lymebrarian - I don't think you have to register to use this site.

The natural healing protocols do work very well for those who stick to them. Herbs are quite powerful, even dangerous, so it's best to have someone to help you through using them, like a Naturopathic Doc, Herbalist, or other natural health Practitioner. Stephen Buhner uses nothing but herbs for his protocol. Zhang's protocol uses herbs as well, but his are in the form of Chinese Medicine, which is another good herbal protocol. These aren't the only herbal protocols, but are a couple of the popular ones.
Posted 9/1/2012 12:04 PM (GMT -8)
I just wanted to throw in my 2 cents as well - I was in the same place as you a while back (actually, I've probably been there a few times!) - what I was doing simply wasn't working for me. But now I'm in a great place where I'm actually ENJOYING the process of healing, rather than wanting to cry every time I look at the pills I have to take. What I ended up doing was lots of oral antibiotics for about a year, then a few months of heavy doses of herbs, and now I've added back in just one antibiotic, along with pretty much revolving my life around detoxification, exercise, healthy dieting, healthy "energy," etc. Obviously what's working for me isn't necessarily the right path for you, but I do want to stress that it is possible to get to a point of just noticing that you're healing, rather than noticing that you have an illness. And for me, learning about herbs and even how to make my own medicine has been a really fun and rewarding experience! I know it sounds hokey but if you can find a way to turn the negative into a positive it really changes everything.

Just know that it's totally normal to feel the way you do - we all have! Many years ago I actually did just totally give up treatment of any kind (although at the time I wasn't aware that I had lyme, so it probably did end up being a good thing to stop treatment for the wrong conditions, in my case). I did end up having a good couple of years, probably just because of all the extra stuff my body didn't have to detox, but I ended up needing further treatment. Don't "give up" - just change things around. You don't necessarily need to devote your life 100% to treating the infection(s), just do whatever you can to heal and trust your body's instincts - it'll tell you what you need.
Posted 9/1/2012 2:26 PM (GMT -8)
Hi everyone,

I'm obviously new to the forum. I've had Lyme for ~ 8 yrs or so, treated ineffectively the first 3 mos, so disseminated. After that, I found a LMD who treated me for 3-4 yrs, first with massive doses of antibiotics for 2 1/2 yrs, then IV for 2 mos which resulted in clearing of symptoms after a month or 6 wks. She then stopped the IV after those 2 mos were up. Symptoms returned after 3 wks. She (LMD) treated me with high dose antibiotics, oral, for another yr or so, got disgusted I was no better and discharged me. How's that for great treatment?

I gave up after that. Haven't had any treatment since then, since 2007 I think. I have the fibromyalgia-type symptoms, most severe in neck, shoulders, back, but muscle pain all over. When docs feel for pulse at ankles, it's very painful. I have the chronic fatigue, and memory problems. I just never have felt well since. I just had a horrendous adverse reax to cipro taken for a bladder infection, so am very reluctant to go back on high dose oral antibiotics. Also, they didn't do any good.

I know nothing about detoxing, or other natural healing protocols. I am on a number of meds which I must take, and am reticent to add herbs when I will have no idea how they would interact with what I already am taking for other conditions.

So I think I am between a rock and a hard place.

I welcome any and all responses.
Posted 9/1/2012 5:26 PM (GMT -8)
Thanks for responding so quickly! I had to get off because we were having an electrical storm, didn't want to fry my computer!

I will check out the detoxing section. And yes, I was tested for co-infections, have ehrlichiosis (sp?) and another whose name escapes me at the moment. My LLMD prescribed rifampin for one of them, and darn near killed me. I ended up in the ER with nausea, vomiting, and vertigo so severe I couldn't walk. Also blood in urine. I know that the coinfections need tx too, but the only other thing she offered was levoquin, which has horrendous adverse effects as well, causes tendons to shear off without any pressure on them. You can wake up in the a.m., w/o an attached Achilles tendon. They have a big black box warning on it now. That happened to a good friend of mine. And according to the literature, you can still have tendons shear even several years later. It damages the tissue. So I refused to try that one.

I am seeing so many specialists at this point, the thought of going to another one turns my stomach, quite frankly. Yet I did set up the appt with someone in Infectious Diseases at Hopkins. My internist assured me that he is knowledgeable in treating mid and late stage lyme disease. We'll see. I'll give him one appt to see what he's really like.

Does a LL Naturopath have an MD? I am both skeptical and afraid to try someone who is not an MD, despite the fact that I have had 3 duds. The LLMD I saw who tossed me away like a dirty tissue is pretty well known. I believe I had gotten her name from an ILADS list. She is in MD. As a matter of fact, I'm certain that's where I got her name. I guess she only wanted successes on her score sheet. She was charging me $350/half hr, non -reimbursable by insurance, she took none. And I spent $700 twice getting the antigen testing. I am definitely positive for lyme.

At the time I was looking for a LLMD, there were only 2 in MD. The one I didn't choose had a 7-8 mo waiting list; the other one's list was shorter. So I went with her. The only other one who looked good anywhere near me was up in NY. I forget his name, but as I recall, he was called on the carpet repeatedly by physcician's board because of prescribing long term high dose antibiotics, and ended up losing his license.

I look forward to participating on the forum. I need to get more knowledgeable again, research again, and definitely need the suggestions and support a good forum provides.

Thank y'all!
Posted 9/2/2012 12:30 PM (GMT -8)
Hey scaredtogetsick-can you PM me. I am in Baltimore too, I think I can give you some info from the ID doc at Hopkins :)

(I can't sent you a PM-there is no link to your email)
Posted 9/2/2012 12:48 PM (GMT -8)
Thanks Beth, looking foward to getting in touch with you. It'd be wonderful to have the support and understanding of someone else with lyme. No one else understands the chronic pain, and fatigue. I don't talk about it at all anymore. People don't want to hear it. Particularly since I"ve had it so long. And I am very looking forward also to info on the ID doc at Hopkins. :)

btw, I changed my profile, so anyone can email me.
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