No bands reactive on last Lyme test... now what?

because of the not reliability of the testing...that kind of testing. Maybe test Igenex too.....
Also did you only do antibiotics? Because 6 months of hammering antibiotics even on rotation or pulsing, it sets a very predictable attack to the spirochete IMO. You might feel great for the next 6 or 9 months.... I truly hope you feel great forever. I am speaking now basically just by observing how long treatment (antibiotics or herbs) tend to fail with some people.

My last labcorp western blot was totally negative too, yet I don't feel great and my c6 Elisa was sky high (blood taken at same time). But we should probably look at symptoms - and you seem good, so...

Hi JimWisneski!
Welcome to our community! I'm so glad you found us.

If you haven't ​yet​, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more. And this is another good list of possible detoxing routines: www.tiredoflyme.com/detox-methods.html

How long were you taking the Doxy, Azith, Tindy, Mino and how long since you stopped taking those? It's possible that you weren't in treatment for long enough and the infection has returned.

You can expect your Western Blot bands to change around pretty much every time you get one. This is because of the lack of sensitivity of the testing as well as the nature of the bacteria - which changes it's outer surface protein from time to time, unlike other bacteria.

When we get a blood test, we have to remember it's like a snapshot in time - it only tells us what's going on at that moment with these infections. It could be that there weren't enough antibodies being produced just weren't high enough in quantity for these inadequate tests to "see".

My "symptoms" are gone as far as I can tell.

My "issues" is something that's been going on for years. Head, sinus, eyes. And I'm in the difficult spot of not knowing if it's Lyme, weather, allergies or what. That's the tricky part here. It's driving me mad and causing unneeded stress and anxiety which is only fueling things to feel worse.

I've been having MAJOR anxiety all week with no way to stop it. Waking up with it and bothering me all day long.


For those who came off long term antibiotics, how long did it take to feel normal? Some people have been telling me this could be my body getting used to no meds. Could be withdrawal (from antibiotics?). Etc. So I'm just a bunch of confused over here lol

I agree, depending on just how long you were infected before getting treatment, you may not have been in treatment long enough.

But, if it's allergies, try staying on a 24 hour antihistamine for a few days and see if that gives you any relief. A word of warning though - that doesn't mean it's still not these infections, but still might give you some relief.

Can you tell us what is going on with your head? Dizziness? Brain fog?

You should have been symptom free for 2 months before stopping treatments. But even then a person can still not have had enough treatments, or it could be another infection that is presenting itself.

Jim - What i plan on doing when I get to the point of feeling well...is pulse the antibiotics - a few days each month.

(This is following a protocol that Dr. J. is using with some patients)


That way...if there are any persisters...you will hit them on the three or four days you take the abx.

So, maybe the first 3 (or 4) days of each month take the abx. Do that for a few months.


Also, maybe do an herbal protocol for a few months, too.

Have you had the sinus issues the whole time you've been in treatment?
I think I would try to find out what is causing those issues...and see if you can get rid of them.

Jim W.,

Welcome to the community. I think it's great that you are in remission. Sounds like you are strong and able to handle a heavy load of abx. I'm with Peteza in the belief that we heal (or remission). It sounds like you may have candida. I had chronic sinus infections. I used to travel a lot for work and a week after every flight I would get them. ENT specialist wanted to operate. I said no. I did a full candida diet/cleanse - you cannot cheat or you repopulate the yeast, for sixteen weeks. This was pre-lyme and I haven't gotten a sinus infection since. Not one in almost three years. I also swear by Young Living Thieves essential oils (No, I am not a rep) I put a drop on a Q-tip and swab each nostril morning and night. I believe it keeps the SIs away. Good luck!

Artemix,

Hi. I'm pretty much a newbie but to hear my LLMD discuss it there are so many factors. Some ticks have much more bacteria than others, some people think tick was on a short time but it wasn't, depends what else is going on in the body and where on your body you were bitten. Not sure if there is any data on this fact but he believes bites from the neck up and especially at base of skull are much more serious. Basically said "If you need to get bit the foot or leg is the best place. Higher up on the body seems not great." My father and mother in-law were both bitten on leg, hip respectively. I was bitten upper chest - I definitely was much worse than they were in beginning and they are old. I see things in them now that look lyme related to me so wonder if they just didn't treat properly at time because they were symptom free.

Artermix - so it took 9-18 months to feel well after stopping abx?

How would you know to stop?


I think everyone's stories are different...

Here's a few stories from people I know who have healed:

The first one: She had symptoms for about 8 months - treated with antibiotics for 6-7 months, was symptom free at that point and stopped. Has been feeling great ever since, no relapse...etc. It's been over 2 years for her now.

The second one: She had symptoms for years...several years. She treated for 3 1/2 years. She didn't feel any improvement until after 2 years. When she stopped abx she was symptom free except for some tingling on her scalp that they figure could be nerve damage...and may or may not heal. She is now off all abx and using LDI. It's been 7 months now...and she is still doing great.

The third one: He had symptoms for over a year - he treated for over a year and has been well since stopping treatment. That was several years ago (5 or more)

Yet another thing we need to understand is wording. For some people, when they say they have Lyme, it means all the co-infections as well, for others it means Lyme only. This will make a massive difference in not only healing time, but in how well we heal.

Trav,

Are you intimating that not everyone gets co-infections? I thought that they did.

Girlie, because all those people I know stopped abx based on what their lyme test results after months of treatment. Because this is how many doctors are treating lyme around here. Some LLMD do treat it this way as well. I am not saying is right or wrong I am just saying that is just how these people have been treated for lyme disease.