Chronic Lyme and Antibiotic success?

amelie_casey said...
I'm a college student and was finally diagnosed with Lyme this may after getting sick last october (believed to be a flare-up of lyme caused by a burn injury i sustained). Since my mom is into the "natural" medicine route, herbs, supplements, the works, and since she believed that I had chronic lyme at that point, we skipped the antibiotics and went straight to natural protocols. I've been to numerous natural drs. without success, many even saying things that were completely contradictory. It's been a year now, and with the time I've had to take off school I'm on the verge of having to quit/losing my scholarship. I don't have time to go through all my symptoms and my situation right now, but basically I am desperate to return to school in January. I believe that i have lyme with a babesia coinfection but honestly the "lyme naturopaths' I've seen haven't really even been able to tell me what coinfections I have, etc.
My question is: has anyone had success treating lyme with antibiotics even when it's chronic? I know there's so much discussion about this but would people recommend going with an antibiotic + naturopath route? Naturopath has done very, very little for me over the past year. My mom doesn't believe that antibiotics would do much good, if any, and is strongly against me going on them. It's her money for treatment so she kind of does have the say.
What are peoples' successes with this? Have antibiotics actually helped/cured people with chronic lyme? Am I worse off without them even if they're not super helpful?

Hi amelie_casey - welcome to our community.

Here on this forum, you will find mixed answers - some prefer the herbal and other non-antibiotic route...others' prefer antibiotics....and some do a combination.
Some have tried herbs with no reaction/success and switched to abx...others' the other way around...etc.

Was it a lyme literate ND you saw...that is important. You do need a Dr. whether it's an MD or an ND - to be lyme literate.

We have successes on this forum - with both herbals/alternatives....and antibiotics.

I am currently treating with abx. I have had close to 40 symptoms (30-something) and am down to about 6 - 8 now...with 3 that are still bad.
I treated with a LLND (who prescribed abx) for over 2 years...and had plateaued with no change for several months...then self treated for about a year....and now am with a LLMD since this past February.
So, from start to now is 4 years....yes...4 long years.

The LLMD I am seeing now has given me the most hope I've had in a while.
I think I'm finally on the cusp of getting rid of the last few symptoms...but too early to say for sure...
I wish I had gone to him from the start...as I think I'd be at this point within 2 instead of 4 years....

Do some reading here and ask any questions you have before making a decision.

And, yes people with chronic lyme do get better with antibiotic treatment. We have members here who have...and I know some personally.
You've had lyme for about a year now?

yes, the naturopaths only methods work. The herbs are very effective and strong. I did antibiotics and herbs. You could treat lyme with just herbs and be fine (but some people can't). It is good to do this under the direction of a LLND. Tell your mom you want to see a LLND (sorry if I misread you haven't done so) to make sure you are taking the right herbs, because they see a lot of people with lyme and will know which ones are best. I would ask about quality, purity, absorption rate, method of actions, interactions, half lives, effective dosages, etc. I like Cat's Claw, Teasel, Stevia, Tumeric, and Garlic extract with NAC, Iodine, Selenium, Zinc and Spirulina, and pro-biotics/fiber for antibiotics.

If the herb only method doesn't work after a while or if you think you want to try antibiotics under direction of your natural pathic LLND. Maybe you can make a deal with your mom if it doesn't work by X date to, after a LLND, you could try abx -- but she is right the herbal/natural method is very good. Your mom is mostly right.

oh, yeah a year? got it. I agree with Girlie then!

PDXtransplant said...
I don't know if mine was chronic bc I don't know when i got infected, but I did abx for 2 months then switched to herbs. It was very effective for me. I'm about a year and a half out and am near 100%. The abx kicked a ton of my symptoms within the first month. While I obviously wasn't symptom free, my LLND felt I had made enough progress to switch to herbs only.

How long did you have symptoms before starting treatment?
if it was a few weeks to a few months - not chronic.....

if it was years...chronic.

Psilociraptor said...
There's really nothing to generalize here. Every condition, every abx/herb is different. I will say, I have found cryptolepis to be a large magnitude stronger than doxy or tinidazole. But I'm still sick. Don't know exactly what i've got. Neuropathy, heart problems, joint problems, muscle aches. Like 90% better with abx/herbs. But relapse every time I stop. So in some ways, i've had successes, in other ways I can't seem to snuff it out no matter what I do. I am successful enough to live a pretty normal life. But I'm worried that at this pace the side effects of treatment will eventually catch up with me.

Psilo,

You are taking something to treat bartonella, right? I ask b/c bart can cause all the symptoms you mentioned.

Thanks to everyone who has replied!
For those of you who were asking, I'm not sure if the natural dr's I've seen were officially "LLND"'s, but one of them is in NH and focuses on Lyme and has cured, if that's the right word, friends of mine with Lyme disease (ie. they had acute or chronic Lyme, some had already been treated with abx, others hadn't, but all are now asymptomatic). The other natural doctor is a Nutrition Response Tester, but we quit going to her bc she had never dealt with lyme before. We have also seen a Dr. in MI who is knowledgeable about Lyme and was also an actual MD, so she was the one who was able to actually get the bloodwork done to confirm I had it.
I would love to see a LLMD, but haven't really been able to find one. I'd be willing to drive quite a ways for one too. Anyone have an LLMD who has helped them in the Michigan or northern OH area? I go to school near Pittsburgh PA so anything in that vicinity would be perfect as well.
My case started out as pretty acute, but when I went to my GP as soon as I got home (I was away at college) they refused to test me for anything other than mono. By the time we finally found someone who could test for lyme and were able to get an appointment it had been 6 months or so that I had been feeling this way, so my mom believed that it was chronic at that point, hence the reason we never went with antibiotics. Hopefully we'll be able to compromise on a combination of herbs+abx now. I'm supposed to return to school in January, but with the combo of mental + physical symptoms i have right now it's going to be challenging.
What antibiotics did you find worked for you the best? I know that different things help different people, but I am wondering if there are certain antibiotics that have nasty side effects or never seem to help, or ones that seemed to work better or helped people? Obviously I will have to go with what the dr will proscribe, but I would rather be knowledgeable about all the different antibiotic options i have rather than blind faith in any dr's advice or prescription.

1000Daisies said...

Girlie said...
Oregonhay -
She had tried the herbals for a year...

“Since my mom is into the "natural" medicine route, herbs, supplements, the works, and since she believed that I had chronic lyme at that point, we skipped the antibiotics and went straight to natural protocols. I've been to numerous natural drs. without success, “


If that’s correct - I think it’s a good trial - and hopefully your mom will listen when you say you want to try antibiotics.
You gave it a good shot.

Respectfully, I don't necessarily agree with this.

That's like saying abx won't help a person who has been on them for a year and hasn't seen improvements. It is very much dependent on which abx that person was on. Perhaps they weren't on the right abx for their issue (eg missed the right abx if Babesia was their major issue).

Same exact point for herbals.

So, I caution people to say abx or herbals failed them because they were on them for a year without improvement. I suggest looking deeper on which abx and which herbals they were on specifically. Perhaps their issues are moreso viral (which I feel is more common than we acknowledge here), so thus abx aren't going to be effective. Similar with herbals, I can try so many of them that don't seem to help, and then I switch to something like monolaurin/lysine (for Kid#2) for virals for him, and wham - that made a big difference for him.

Back to the OP - I am VERY open about having both epic failures in BOTH mainstream/allopathic and alternative medicines. I personally became very frustrated with years of using abx, and my kids have seen much better improvements and quality of life being off abx (and being on herbals and other alternatives). Having said, there are plenty of success stores on abx, herbals, or combination of both. Conversely and unfortunately, there are also plenty of stories where those weren't successful for individuals either. I now very much believe it's trial and error.

I understand the pressure to want to live your life normal and be able to go back to college. But I have to be honest with you - you can't rush this. MANY people here have given up things - such as college, working, school, and so much more. Not because they wanted to (not necessarily), but moreso because they simply could not do these things being as sick as they are. Nobody wants to be in that position. I think it's important to have realistic expectations with this. I don't mean to sound unsympathetic. I have been there, except as a parent watching their child unable to attend school regularly. I STILL have a hard time reflecting how much innocent TIME they lost from their childhood and how that is something they will never get back.


Truly wishing you the best in finding your path to healing.

I’m not saying that herbals won’t work - but after a full year - it’s certainly understandable to want to try another route - ie abx.
A response - either good (ie improvements ) or not so good (ie herxing) usually happens within a year’s time - I don’t think it’s unreasonable at this point to try abx.

It sounds like the OP was appeasing her mother with the herbals - and I think after a year it’s reasonable to try the abx route.
I could be wrong .

Maybe a response will come within a few months.

Her thread is asking about chronic Lyme and abx success

For what it is worth to the convo...

I was being treated by a couple natropaths with a " specialty" in Lyme etc. and took their formulated herbs for quite awhile with little progress. When I switched to sourcing my own herbs and even using green dragons capsules, I had more control over dose sizing and Herbs used. And much more success getting rid of symptoms.

Yes it requires more research and involvement on your part but it is more of a sure try. ( I'd reccomend Stephen Bruhner books for helping with any research and treatment plans for herbs.

Ther isn't a one size fits all, so prescribing a preformulated herbal tincture is less likely to hit the nail in the head. Correct me if I'm wrong but the few naturopaths I've seen do just that. I have talked to some very good herbalists who are more inclined to customize formulas and protocols and also seemed to make their products stronger.

That's my personal observation.

But I definitely would try whatever speaks to you. Not one is better than the other, it's whatever works for you. Just know that until you go through symptom profiling as well as herbs and dosages used, you may have undertreated with the herbals. As well as missed coinfections.

Now to walk the walk, I must re-evaluate my current protocol.

Post Edited (Lightlife) : 11/3/2018 8:41:54 PM (GMT-6)

Here’s a link to the herbalist list:

http://buhnerhealinglyme.com/resources/herbalists/

1000Daisies said...

Girlie said...

1000Daisies said...

Girlie said...
Oregonhay -
She had tried the herbals for a year...

“Since my mom is into the "natural" medicine route, herbs, supplements, the works, and since she believed that I had chronic lyme at that point, we skipped the antibiotics and went straight to natural protocols. I've been to numerous natural drs. without success, “


If that’s correct - I think it’s a good trial - and hopefully your mom will listen when you say you want to try antibiotics.
You gave it a good shot.

Respectfully, I don't necessarily agree with this.

That's like saying abx won't help a person who has been on them for a year and hasn't seen improvements. It is very much dependent on which abx that person was on. Perhaps they weren't on the right abx for their issue (eg missed the right abx if Babesia was their major issue).

Same exact point for herbals.

So, I caution people to say abx or herbals failed them because they were on them for a year without improvement. I suggest looking deeper on which abx and which herbals they were on specifically. Perhaps their issues are moreso viral (which I feel is more common than we acknowledge here), so thus abx aren't going to be effective. Similar with herbals, I can try so many of them that don't seem to help, and then I switch to something like monolaurin/lysine (for Kid#2) for virals for him, and wham - that made a big difference for him.

Back to the OP - I am VERY open about having both epic failures in BOTH mainstream/allopathic and alternative medicines. I personally became very frustrated with years of using abx, and my kids have seen much better improvements and quality of life being off abx (and being on herbals and other alternatives). Having said, there are plenty of success stores on abx, herbals, or combination of both. Conversely and unfortunately, there are also plenty of stories where those weren't successful for individuals either. I now very much believe it's trial and error.

I understand the pressure to want to live your life normal and be able to go back to college. But I have to be honest with you - you can't rush this. MANY people here have given up things - such as college, working, school, and so much more. Not because they wanted to (not necessarily), but moreso because they simply could not do these things being as sick as they are. Nobody wants to be in that position. I think it's important to have realistic expectations with this. I don't mean to sound unsympathetic. I have been there, except as a parent watching their child unable to attend school regularly. I STILL have a hard time reflecting how much innocent TIME they lost from their childhood and how that is something they will never get back.


Truly wishing you the best in finding your path to healing.

I’m not saying that herbals won’t work - but after a full year - it’s certainly understandable to want to try another route - ie abx.
A response - either good (ie improvements ) or not so good (ie herxing) usually happens within a year’s time - I don’t think it’s unreasonable at this point to try abx.

It sounds like the OP was appeasing her mother with the herbals - and I think after a year it’s reasonable to try the abx route.
I could be wrong .

Maybe a response will come within a few months.

Her thread is asking about chronic Lyme and abx success

Yes, but she also talks about herbals too.

My point is not focus on duration and call it a failure (not saying you said that). It's just so much more complicated than that.
Look at the herbals and see what was used.
I'd say the same exact thing if a person did abx for a year and called abx a failure (look at the abx and what was used).
I think the specific herbals and specific abx give more of a clue than the duration by itself. (Duration is important, but not by itself in judging success or not of a treatment.)

It's very much trial and error for sure. And FWIW, I had been to MANY alternative doctors that failed to help us - until I found one who seemed to "get" one of my kid's issues and was able to help him. I also had been to MANY allopathic doctors that failed to help us too - until I found a functional medicine MD doctor too (he's our primary). We also have a GP who supports us and is wonderful (he follows functional medicine too but hasn't fully crossed over). I think many of us have a long list of doctors that failed us before we found ones who could help us. It takes far too long for many of us to find those doctors!

Yes, she talks about herbals...but in the context that her mother pushed for them:

The OP said "I would love to see a LLMD, but haven't really been able to find one."

Based on that...it sure sounds like she wants to try abx...as we all know that the LLMD's generally focus on pharma....

"That's like saying abx won't help a person who has been on them for a year and hasn't seen improvements. It is very much dependent on which abx that person was on. Perhaps they weren't on the right abx for their issue (eg missed the right abx if Babesia was their major issue)."

In a year of herbals...with ND's I would think she has covered the three B's - at least with the one who was lyme knowledgeable.
Plus - after a year of abx with NO herx or improvement...it would certainly be reasonable to try an herbal route.

A year with no change...is a long time....ie no herx or improvement.

Lightlife said...
U fortunately, I treated with a naturopath once who never mentioned coinfections. Who was supposedly Lyme knowledgeable. Not every practitioner is up to speed. This forum is where I learned most of my information. And books. But this site leads in info.
I'm not in a Lyme Facebook group, not on Facebook at all... I'm wondering If I'm missing out on anything.

What protocols did the ND follow? If it was cowden, Buhner, Beyond Balance, ByronWhite - or none of those?

Hi there. Although I would prefer natural protocol I was sick ten years, misdiagnosed/ undiagnosed. So when I finally saw a Lyme Dr I was extremely I'll. After many disappointments with Drs I felt she knew what was going on and there were a few tests but mostly clinical dx. So I went with the abx treatment for 15-17 months. Although I did not feel a great improvement at the time I stopped treatment I continued to see improvement. It was a slow improvement in dumps. I use supplements now and we are considering putting me back in treatment but on reflection I think using the and at that time saved my life. Obviously everyone has different experience and doesn't mean you will have same experience but I think for those who have been sick a long time need to consider abx if recommended by Lyme Dr.

Good luck and pray you see improvement soon.

Have you had a CD57 test?