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can you just live with your lyme?

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Posted 9/12/2018 8:57 PM (GMT 0)
is it possible to just have mild lyme. I have and have always had most of the symptoms on and off but never to the point that I cannot function. I am wondering if ones lyme can just coexist with them to the point where you just get used to living with it and hope it just stays that way, if that make any sense. not happy about it, but when I see what other people go through I try not to complain to much.
Posted 9/12/2018 9:50 PM (GMT 0)
I understand what you mean, we are all affected differently.

If you have a lower bacteria load or mild Lyme it would be good to knock it back as far as you can.


For many years I had mild symptoms(unaware it was Lyme and co) and then I was hit hard with neuro symptoms.

I would be cautious about letting these infections fester.

I function and work, but its not always easy.

My thoughts are that I don't want to just live with my mild symptoms and monthly flares.

I also fear that if I don't try my best to eradicate Lyme and my co infections now...what quality of life does the future hold

As time goes by , will I have the strength to just tolerate it, or what about other illness occurring that could weaken me further,

I don't know what the future holds for me...all I know is that today is my best chance at fighting and conquering this beast.

Dont worry about complaining, your are welcome to ask any questions here and also reach out for support when needed. We are all in this together here..
Posted 9/12/2018 10:01 PM (GMT 0)
Def possible, these infections affect people in so many different ways, it is a wide spectrum. Some are completely debilitated, some are virtually asymptomatic.

I'd generally want to treat even if I had mild symptoms, the worry (not to make you paranoid) is that the infections might blow-up at some point down the line. They are very opportunistic and tend to amplify in moments of stress or trauma. Then again, they might be kept in check indefinitely.

Even if one doesn't want to do intensive treatments, there are various herbal protocols out there that can be started slowly and very gently. I think that can be a good avenue because if you are able to function why blast yourself with treatments potentially knocking yourself out? imo better to treat slowly and gradually while still maintaining high function if possible. Of course these are all personal choices, and many ways to do it!
Posted 9/12/2018 10:14 PM (GMT 0)
So I'm now under the opinion that Lyme is a opportunistic infection. Meaning a healthy immune system will keep it at bay.

I may be the minority here and perhaps get a tongue lashing.

Klinghargt now feels Lyme can become is activated by a Retrovirus.. That he claims comes from WIFI (yes a little far fetched but who knows) and or contaminated vaccines.

Which could be true,, there does seem to be a correlation to people recently vaccinated and then having Lyme.. I myself became severely symptomatic a few months after a serious of vaccinations.

*So following the Lyme to vaccinations path led me to Aluminum poisoning that can occur in some people. Aluminum being in vaccines.

* Research shows that the body should be capable of dealing with the Aluminum. Unless you have a condition that disables this function.

*One know element that is know to do this is Mercury.

* Where you get the mercury is usually form the silver filing in your mouth. (Or playing with broken thermometers which I did)

* Im now treating Heavy metals starting soon the ACC protocol.

As the saying goes MIM (Maybe it's Mercury)
Posted 9/12/2018 10:17 PM (GMT 0)
Mark brings up a good point. Just because one might have the infections, don't want to overlook other potential angles like metals, mold, etc. It's not always the infections which are driving illness, sometimes they are just cofactors and merely riding the coattails of a more significant factor.
Posted 9/12/2018 10:43 PM (GMT 0)

stickersteve said...
is it possible to just have mild lyme. I have and have always had most of the symptoms on and off but never to the point that I cannot function. I am wondering if ones lyme can just coexist with them to the point where you just get used to living with it and hope it just stays that way, if that make any sense. not happy about it, but when I see what other people go through I try not to complain to much.

Thing is - will you be "waiting for the other shoe to drop"?

Mild lyme can become major lyme and co's....and then you'll be treating a longer-standing infection that may now be debilitating.

It's certainly your choice and there's no rush in jumping into treatment.
Posted 9/12/2018 11:28 PM (GMT 0)

stickersteve said...
is it possible to just have mild lyme. I have and have always had most of the symptoms on and off but never to the point that I cannot function. I am wondering if ones lyme can just coexist with them to the point where you just get used to living with it and hope it just stays that way, if that make any sense. not happy about it, but when I see what other people go through I try not to complain to much.

I have wondered the same thing. I was infected in early July and did 7 weeks of heavy antibiotics (did just doxy for 3 weeks then added plaquenil and bactrim for 4 weeks on top of an additional 4 weeks of doxy). I caught the infection as early as possible. Literally started the doxy the day after pulling tick off me. If anyone should be successful with early antibiotics, it should be me. However, since ending that protocol, I have not been able to end the jaw pain, morning internal tremors and tingling sensation in my back (a couple of times a day, not constant).

I stopped antibiotics but am thinking of starting japanese knotwood and then continuing to add herbs as I go.

Sometimes I wonder if I could have post treatment lyme disease? Even Buhner acknowledges that PTLD does exist, in addition to chronic lyme disease. I am hoping they subside with time.

But if my symptoms remain here and don't progress, I wonder if I can live with it? I am afraid to continue antibiotics given all of the research out there about the damage to your gut and long term effects they can have. In just the 7 weeks, I was developing oral thrush despite monitoring my diet and taking high quality probiotics.
Posted 9/12/2018 11:58 PM (GMT 0)

Thing is - will you be "waiting for the other shoe to drop"?

Mild lyme can become major lyme and co's....and then you'll be treating a longer-standing infection that may now be debilitating.

It's certainly your choice and there's no rush in jumping into treatment.


Comment on post above.

I have to agree with this. It’s like having high BP. 150/85 won’t kill you but I found out the hard way that being at the upper threshold not a good place to be. 1 Kidney infection and your off to the ER. Lucky you won’t stroke out.

More to your case,,, all it will take is 1 major life event and this infection will get the upper hand. Something you don’t want.

So I think it’s important to treat.. while I’m waiting to start they Mercury chelation, I’m still treating with Cowden protocol. The detox tinctures alone keep my symtoms at bay.

So in short, I have enough respect for this infection in that not treating is not a option.

Post Edited (Mark FW) : 9/12/2018 6:02:54 PM (GMT-6)

Posted 9/13/2018 12:18 AM (GMT 0)
In regards to Klinghardt, my understanding is that he (and other klinghardt trained doc i follow) are having much easier and better luck treating lyme after retroviruses. So he is still treating it (usually with biopure cocktail & cistus tea).

I do like Klinghardt. I’m not totally on board with the wifi stuff but who knows. I try to keep an open mind and go with my gut.
Posted 9/13/2018 12:21 AM (GMT 0)
Lyme is very complex, there are many contributing factors. But it’s progressive, follows a course. Much worse in the stage 4 neurological Lyme.

The longer it goes undiagnosed the more difficult it is to deal with.

Some people can operate with a mild case, but that can develop out of dormancy with stress or contributing factors.
Posted 9/13/2018 2:02 AM (GMT 0)
Before the sulfa insult i guess i was as happy or miserable as the next person . The bugs happily eating me slowly. But when ms and als sx happened the symbiosis was not ok with me ....most are ok with fog and lethargy and arthritis ...i was no longer a functional human in so many ways ...dont let it get that bad
Posted 9/13/2018 3:07 AM (GMT 0)

bluelyme said...
The bugs happily eating me slowly...But when ms and als sx happened the symbiosis was not ok with me ....most are ok with fog and lethargy and arthritis ...i was no longer a functional human in so many ways ...dont let it get that bad

I second this sentiment, this is how I feel right now, that there are bugs happily eating some of my most important tissues namely eyes and brains..and I can't keep letting that happen (!)
Posted 9/13/2018 4:46 AM (GMT 0)
i know quite a few people who after many years of treatment have gotten as far as they can (not 100% symptom free) and just live with the 'disability'. i've been on meds over 3 1/2 years and seem to of hit a wall.

as long as i take my gabapentin i can live my life decently most days. i feel i won't get much better as i plateaued quite a few months ago. still treating with Dr. J but i think i've hit the best place possible and i know quite a few others who are in the same place.
Posted 9/13/2018 12:42 PM (GMT 0)
im torn on this...

i think we dont have a choice....its not really going away forever....even with treatment

so when we are to 80% or so, do we know for certain that continuing treatment (over a yr) is going to get us better? could our issues actually be autoimmune, or nerve damage that needs to time to heal....or yeast which will only get worse the more our microbiome is affected (despite all the nystatin or diflucan we take)

not to mention, do we REALLY know why we are sick...if lyme messes up thyroid, or hormones or etc etc, maybe thats what we need to focus on

when you read buhner he talks about living with the bugs rather than blasting them over and over

finally since a tick is a dirty needle, what else might we have besides the 3 b's ehrlichia and mycoplasma...what undiscovered parasite or bacteria might be the issue

my llmd doesnt really look at viruses at all...is there a synergistic effect of different bugs working together?

as socrates said, "all i know is i know nothing"
Posted 9/13/2018 9:52 PM (GMT 0)
I am a Physician Assistant and from my experience as a chronic Lymee and now Mycotoxin exposure . I can tell you once I feel great I will maintain suppression with chinese herbs. I like Green Dragon because it has Bunyner's herb selection. I can aslo say when I was off therapy symptoms came back in 6 months and I went back on only herbs and 2-3 months later I was better.
Posted 9/13/2018 10:09 PM (GMT 0)
So we’re talking about two different scenarios.

1. Not treating at all

2. Treating to a certain point and plateauing and then maintaining that.
Posted 9/14/2018 12:37 AM (GMT 0)
right girlie. i think doing some type of maintenance/suppression is an absolute must for pretty much everyone as we never know if these buggers are going to make a comeback.
Posted 9/14/2018 1:42 AM (GMT 0)
That's a tough decision and one I've grappled with for years. I only did a few months of abx back in 2013 then 5 months of herbs because of mild symptoms and am now regretting it. I can still function pretty well most days but I have less good days than I had before and am losing weight now every year so I think as one gets older the odds are the disease will progress like it has with me.
Posted 9/14/2018 2:04 AM (GMT 0)
then there's the age factor.


Would you rather be doing this when you're in your 30's....or 60's?

(That is if you knew you had it in your 30's)
Posted 9/14/2018 3:13 AM (GMT 0)
I had mild symptoms for the first 39 years of my life before I really got sick in 2009. After the 2009 onset, symptoms got better and drifted in and out while new symptoms emerged as the years went by. Even days when I didn't have noticeable symptoms, I never once felt "normal" again since 2009.

In 2015 after getting bronchitis, I got very sick and have never recovered.

The older you get, the weaker your immune system gets and the more impaired your endocrine system becomes, and all the while your body accumulates various toxins, insults, and infectious pathogens as part of living on this earth that can eventually and suddenly take you down.
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