If there is no cure for chronic lyme,why go through all the meds that play a number on your kidneys, liver etc? Yes, lyme does too. Are the meds to keep you from getting worse? Just wondering.
Why can't you just build your immune system and treat the symptoms?
So much I don't understand.
Posted by lymegal23 (Member # 28573) on :
Hi there Phyl. I see you're in need of support.
There is treatment for Chronic Lyme. and in my opinion although antibiotics dont get EVERYONE WELL (some people have gotten better on other alternative treatments like herbs and rifing etc) I believe that you need to treat the infection. Lyme is a bacterial infection. Therefore it needs to be treated. Treatment for lyme can be as bad or even many times worse than the original disease before treatment. But thats the way it is. and if you want to get better you have to go through the darkness.
Chronic lyme means youve had it for a while. therefore youre bacterial load is high. Therefore when you treat it and kill it, the endotoxins it releases make you feel like crap.
but detoxing is important and sticking to your treatment is important.
Building up the immune system can help yes but it isnt going to eradicate the disease. its bacterial. and its disseminated in your body. therefore you need to treat it. antibiotics do that. it kills the bacteria
Hang in there. you are at the beginning of your treatment. Treating it and feeling crappy from herxing is alot better than not treating it and continuing to feel sick. because at least with treatment. youre feeling sick is going to pay off later. where not treating will lead you sicker and sicker
HANG IN THERE. we're all here for you!
Posted by AlanaSuzanne (Member # 25882) on :
You cannot build up your immune system when a persistent infection is tearing it down. You have to treat the infection so that you can start building your system up again.
As far as just treating the symptoms, why would you want to try treating symptoms like severe neurological, cardiac, etc. problems and let the infection fester? The symptoms will just get worse.
The meds will not affect your body the way LD and cos do. And, if a med does not agree with you, it can be changed. There are also a lot of therapies that can be done in conjuction with medications--supplements, diet modifications, rife, etc, etc.
Are you asking all these questions because your symptoms are very mild?
And, I don't buy that there is no cure for CLD. I believe there is or will be. Regardless, many people regain their lives after treatment cure or no cure.
Posted by BoxerMom (Member # 25251) on :
"No cure" means there is no way to completely eradicate the infectious microorganisms. Some will always remain.
The same is true for every illness you've ever had. You still carry Varicella Virus from when you had Chicken Pox. But your immune system keeps the remaining viral organisms from proliferating and causing illness. Until you get Shingles, which is reactivated Varicella Virus.
"No cure" is a misleading statement. You can reach remission, which means symptom-free, with a very small pathogen load that your immune system can contain. Return to normal life.
Can you imagine the parental hysteria if we said there was "no cure" for Chicken Pox? Parents would assume their kids would be sick and spotty forever. Rather, Chicken Pox is self-limiting, meaning in most cases, it resolves without treatment.
Chronic Lyme requires treatment to get under control.
If you decide to treat only the symptoms, the pathogens will continue to proliferate and you will get sicker.
Once you have chronic Lyme, there is not enough immune building in the world to get your pathogen load under control. Since some people have hyperactive immune systems or autoimmune problems, it can be risky to build the immune system.
Sorry, the only way out is through.
Posted by TF (Member # 14183) on :
I had undiagnosed lyme disease for at least 10 years. Plus, I had babesiosis and bartonella.
I got to a good lyme doctor who followed the Burrascano lyme treatment protocol, and I got rid of my diseases. In March, it will be 6 years since I completed my lyme treatment and I am still symptom free, enjoying my life. I have the same life I had before lyme disease.
I have at least 4 friends who also had lyme and coinfections and they went to the docs I recommend and got rid of their diseases. Two of these ladies had lyme for at least 15 to 20 years misdiagnosed as fibromyalgia. They have each been well for at least 3 years now.
So forget the people who say there is no cure. Treat this horrendous disease and get your life back.
I don't know where you are in VA, but you could travel to Baltimore and see these successful doctors and get well.
Posted by Hambone (Member # 29535) on :
I'm very curious to hear about Dr. K's talk in New York next month about healing Lyme without antibiotics.
Phyl, have you tested for KPU? I just did my test yesterday. Waiting to see what the results will be.
I wonder of this is why we have such a hard time with abx?
Posted by Camp Other (Member # 29797) on :
onbam,
Agreed!
phyl6648,
I've asked the same questions you have, and after much research have come to the conclusion that antibiotics and other antimicrobials are necessary for treatment and offer the most effective path to getting to a stable point of health. And then hopefully remission.
I am not 100% sure about cure. Someday, I think it will be possible with better medications and technologies that replace antibiotics.
What I have learned so far (well, I've learned more, but these are the major points atm):
1) Certain genotypes of Borrelia bacteria are more virulent than others and more likely to cause persistent infection.
2) If you add in coinfections, there is some evidence that makes the Borrelia infection harder to beat. And some evidence that you will be sicker with more symptoms for a longer period of time. The coinfections must be treated.
3) To top it off, if you have a particular genetic background (yes, minding your own business and doing nothing wrong - all you had to do was inherit your parents' genes) your immune system can react in such a way that you cannot effectively fight off the remaining bacteria. In some cases, the immune system can trigger inflammation in excess proportion to the infection present. This is something antibiotics cannot fix - some other treatment will have to be found for it.
In the meantime, antibiotics and antiprotozoan meds are the tools of recovery.
It appears that some people may get enough of a jump on the bugs that their immune systems can overcome what remains. Why? Don't know; it requires more study. Sometimes it is really the coinfections that really have people by the short hairs, and once they treat those, they begin to get better.
It depends on what went into that tick that bit you, and in some cases we simply don't know yet.
There isn't a test for absolutely every pathogen out there, so we keep trying different combinations and seeing what the clinical response is. (This is another way of my saying that I admit I am somewhat of a guinea pig.)
Posted by BoxerMom (Member # 25251) on :
Good response, Camp Other.
I found Hyperbole and a Half through your blog, and have been LMAO ever since!
Posted by Camp Other (Member # 29797) on :
Thanks, BoxerMom.
Isn't Hyperbole and a Half a riot?
I really love her "Pain Scale" post and the more recent "Christmas play" one cracked me up, too.
Posted by BoxerMom (Member # 25251) on :
I love A Better Pain Scale.
My favorite is a toss up between The God of Cake and The Party. And maybe How a Fish Almost Destroyed My Childhood. And anything involving her dogs.
OK, I love it all.
Posted by phyl6648 (Member # 28522) on :
Thanks everyone. I don't have a LLMD and one doctor tells me one thing and the other says another. Yes I am all mixed up but getting there , maybe.
Hambone, no I haven't had the KPU test , what is it?
Oh, well I am going to try the doxy again today and hope to be able to get to a doctor soon. Or maybe I should see the doc first. Why is this so confusing for me? Guess because of the reactions I have had and major reactions from the abx..
Thanks for all your support and help.
phyl
Posted by j100100 (Member # 30277) on :
TF could you send me a message with the doctor that you saw. I live in Texas but don't mind traveling. Anything to get rid of this stupid virus!
Posted by Hambone (Member # 29535) on :
quote:Originally posted by phyl6648: Oh, well I am going to try the doxy again today and hope to be able to get to a doctor soon. Or maybe I should see the doc first. Why is this so confusing for me? Guess because of the reactions I have had and major reactions from the abx..
Thanks for all your support and help.
phyl
I'd wait and see a doctor first, Phyl. You will feel worse on the Doxy and it will make traveling even harder. Get the doctor appointment out of the way and then go home and start Doxy.
I always have to let off the gas ( stop my abx ) a few days before an appointment or else I would never get there.
Posted by HorseHelper (Member # 30255) on :
I get confused also. I'm new but doing my best. Got Doxy. other day. Pharmacy doesn't know why ten days only, he says it should be 28 days.
I believe Dr. is going by other anti Lyme guidelines. You know, its just amazing!
So I've been given Lyme, I am going to make Lyme Ade! Want some?
Thinking of starting support group also.
Oh, if oral abx don't work, IV port is what Dr. wants to do! Bummer!!!!!!
Hang in everyone
Posted by Camp Other (Member # 29797) on :
HorseHelper, am I following you?
Did you say that your doctor prescribed ten days of Doxycycline but the pharmacy said you should have 28 days?
That seems to be the reverse of what an LLMD would do.
On the other hand, trying IV antibiotics is more like something an LLMD would do.
I'd be confused, too.
Posted by Lymetoo (Member # 743) on :
I would not do IV abx without a REAL LLMD.... well, I wouldn't do "lyme treatment" without a real LLMD either!! Posted by HorseHelper (Member # 30255) on :
Camp Other, Pharmacy thought I had done my homework on Lyme and I have.
Yes, IV port is what Dr. would do. Keep in mind I thought and think perhaps she may be LLMD, however, may follow those other guidelines. I am calling tomorrow for additional 2 wk., we'll see, I mean, do you think I want this IV port? NOT!!!!!!
tHX. FOR THE COMMENT Posted by HorseHelper (Member # 30255) on :
I need, perhaps, to go through certain things to realize my options. I'm an individual and have my own thoughts. God and I are working together, He is the great physician, not man! I trust Him.
I do have a Dr. close by that I hear understands lyme (LLMD). If this Dr. doesn't increase Doxy, this is my next option. She is expensive. She is out of net work with Aetna, however, when it comes to health we all know it has to be done!!
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