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Should I change my treatment plan?

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Posted 9/4/2017 8:59 AM (GMT 0)
Hi
I have been treating for 4 months now without seeing much progress. I generally have the same ups and downs as before and I'm frustrated that I don't see any progress. I don't think I had any herx, but it's hard to know.

After a test that showed elevated liver enzymes two weeks ago, I've taken myself off the treatment and are only taking vitamins, NAC, omega 3 etc. No antibiotics or herbs.

The first two months I treated with minocycline, rifampin and azithromycin in addition to some herbs. This protocol was change to only minocycline and some extra herbs for my last two months as my immune system was further deteriorating.

I'm really unsure of what to do next, and I'm thinking of switching to only herbals. I have a skype appointment with my LLMD tomorrow. Another factor is that I'm seeing an LLMD abroad, and am unable to get antibiotics without travelling there. It's expensive. The other remedies they use I can order online. I do however have a stock of minocyclie for about another month or so.

I don't know if the mino is causing the elevated liver enzymes or the herbs. If I knew it was mino I would definitely switch to herbs, but it was only two weeks ago that the values really went up. I'm really confused and would be glad for your input.

I have now done 4 months of abx and haven't seen the results I hoped for. My total NK cells went further down after my first two months of 3 abx. They have since stabilized under the new protocol. CD57 is still stuck at zero shakehead

I would really appreciate your input
Posted 9/4/2017 9:24 AM (GMT 0)
just out of curiosity, are u getting treated in one of the augsburg clinics ?
Posted 9/4/2017 9:31 AM (GMT 0)
Yes. Are you too?

Post Edited (RedLabel) : 9/4/2017 3:55:15 AM (GMT-6)

Posted 9/4/2017 10:03 AM (GMT 0)
yeah i used herbs for 2.5years from them, now i need to get back on antibiotics, exactly the same scheme as you are (that's how i figured u were treated in the same place)...

if i don't see any progress in 6 months i am going to drop them. this will mean they do not live up to their fame. i am also not seeing any of the new antibiotics or herbs that are emerging. i would like to try dapsone, pyrazinamide, etc.... i have a higher CD57, around 154. but still, my neuro symptoms progressed and are much worse than when i got admitted in their practice. i wonder if i would have been better by just following buhner myself. they used a lot of buhner herbs but i suspect they are too low in quantity and they do not really know how to treat bartonella with herbs.

i am also a bit skeptical about this new antibiotics treatment. i say this because i was treated by a local doctor, before getting to augsburg and starting herbal treatment. the local LLMD gave me antibiotics 50% higher in doses they have

- they give 300mg rifampin a day, i was on 600
- they give 200 mino a day, i was on 300
- they give azithro one day on one day of, i was on azithro daily

besides that, they give artemisinin for the persisters, but they recommend artemisia herbs, not artemisinin which is the active chemical, and we know 400mg of artemisia extract is not exactly the same thing as 400mg of artemisinin... so im not even sure they go after persisters either.

anyway, my local lyme dr was a bit nuts as was giving really high doses without asking for any liver or kindey function test. One regimen was: 300mg mino, 1500mg cipro, 1500mg tinidazole all at the same time for one month. To prescribe that without liver/kindey test is at least nuts ... so at least these germans ask u to do regular tests so that u don't die like an idiot.
Posted 9/4/2017 10:27 AM (GMT 0)
Do you guys take milk thistle in standardized capsule form? It does help with the liver. For me anyways, I have been taking it since day one of treatment and when I was on the ABX I never had an issue with my liver tests.

Take care, Jo
Posted 9/4/2017 10:29 AM (GMT 0)
yepp, i do. while on abx i haven't had liver issues either. maybe because of it.
Posted 9/4/2017 11:11 AM (GMT 0)
Have you been feeling good while on herbs mpost? Was that the reason you changed to herbs in the first place?

I don't take milk thistle, but I have other stuff for liver supprt, NAC for instance. Do you take milk thistle in addition to what you get at the clinic, or did you receive it from them? How much do you take goshawk and mpost?

I think it was exactly the same dose of abx for me too. I agree that when I read the labels on the herbs it looks to have less amount than what buhner says, but they use a lot of other stuff as well so I figured these might add some effect.

Bums me out a bit to see that you are not well after treating 2 years with the same stuff I'm using. I was actually hoping the high liver enzymes were because of die off, but I don't know. I also take new tests every 2 months. Initially i had a weak positive, after 2 months negative, and now after 2 additional months the elispot is actually at its highest. Maybe my body is able to respond better, or maybe everything is getting worse. Hard to know.

Why did you leave your first LLMD mpost?
Posted 9/4/2017 12:17 PM (GMT 0)

RedLabel said...
Have you been feeling good while on herbs mpost? Was that the reason you changed to herbs in the first place?

6m of abx that high doses got me wasted. lost a lot or weight and was.feeling terrible. during this time people on forum here bragged about how cool the herbs are and i thought to give it a try. i do not regret that decision, would not have been able to forgive myself for not trying herbs

RedLabel said...

How much do you take goshawk and mpost?

used to take 1000mg, im not on abx just yet, starting this week.

RedLabel said...


Why did you leave your first LLMD mpost?

i explained. hi doses of abx, no regular liver checks, and then the famous german clinic, thought they are better.

i've met a girl in their waiting room, her mom told me she was in treatment for 5 years. she was from germany, bavaria.

my feeling is patients that decide not to continue come back half year later feeling much worse and asking for more meds. that would explain the 8 months waiting line they have and the relative poor treatment results. probably most LLMDs have poor results treating it bit it is better to treat than do nothing...
Posted 9/4/2017 12:35 PM (GMT 0)
my advice to you redlabel is if you dont take antibiotics, take the herbs. usually liver enzymes are not affected by herbs as much , but it is way better than not take anything... i would get buhners books (the lyme 2nd edition plus the coinfections book) and order his herbs and give it a try. this is my plan after im done with trying augsburg.
Posted 9/4/2017 12:52 PM (GMT 0)
Hi RedLabel,
Please try not to get to discouraged, I understand how difficult it is. The important thing is to continue treating and to make sure you are treating the correct infections.
Build your immune system with proper diet, detoxing, exercise and supplements that are supportive of overall health.

Make sure you don't have other issues such as yeast,mold, metals toxicity etc. They will inhibit you healing.

I take Jarrow brand milk thistle, each capsule is 150 mg and I take 5 a day. I take one in am, lunch time, pm(dinner time) and 2 at bedtime.

I wish you the best of healing and there is hope it just takes some time, Take care, Jo
Posted 9/4/2017 12:55 PM (GMT 0)
Thanks mpost. I actually have buhners book already and have found many of the herbs there in my treatment plan, but as you say, at lower dosages.

Hmm. After 5 years at the clinic I would have tried something else but maybe she has tried it all already sad I think it's strange that they use the same approach for all their patients, but what do I know.

I did look for buhner herbs online before I went to augsburg, but almost none of the sites he recommends ships to Europe. I ended up buying some stuff at iHerb, but don't know how good those are (NOW brand). Do you know of a good place to buy? I reckon you're in Europe?

Too bad you need to go back on abx. Did you feel OK in the meantime?
Posted 9/4/2017 1:52 PM (GMT 0)
Hello, I just wanted to add one more thing to all the good advice everyone has already given you. There is a supplement called Tudca, you can get it on amazon. I heard about it on a podcast by Dr Jay Davidson (you can google him too if you're interested). I think the tudca is really helpful for the liver. Good luck to you!
Posted 9/4/2017 2:37 PM (GMT 0)

goshawk said...
Hi RedLabel,
Please try not to get to discouraged, I understand how difficult it is. The important thing is to continue treating and to make sure you are treating the correct infections.
Build your immune system with proper diet, detoxing, exercise and supplements that are supportive of overall health.
Make sure you don't have other issues such as yeast,mold, metals toxicity etc. They will inhibit you healing.

sorry goshawk. i know you are trying to help and we really appreciate all the effort and heart people put on this forum to help each other. but i thought we are paying an LLMD to do just that: find what coinfections we have and run more tests on the more difficult patients...

the only thing where we can help is diet and exercise.

or of course you can take matter into your own hands, drop your LLMD, find some GP that is lyme literate and can prescribe you antibiotics, and go for it ...

we were under the impression here that experience is something LLMDs have (other lyme patients before us) and we don't, since we are our first patient smile

maybe a change of our LLMDs is what is needed, not us turning ourselves into doctors...
Posted 9/4/2017 3:06 PM (GMT 0)
Well, some need to be their own Drs.

We are trying to fix our whole bodies- I'm starting to think thats too much for any Dr.

Why do all the "great" Drs have different approaches from each other? That tells me / proves that they are still learning and obviously cant agree on treating this.

I've met people who spent 50 to 100 grand flying around the country to LLMDs and are still stick.

The mental health cost of spending that kind of money and still being sick is a huge toll against healing itself!!!!!! Thats a bill I would never want.
Posted 9/4/2017 3:17 PM (GMT 0)

astroman said...
Well, some need to be their own Drs.
We are trying to fix our whole bodies- I'm starting to think thats too much for any Dr.

i know, but that's risky, right ? there are some people online that got very very sick doing just that. i'll search for the blog of some lady that self treated with doxy for 4 years or so, and she was much worse than in the beginning. she was buying the doxy online from some rogue chinese site that was selling antibiotics for animal treatment ....


so some (not all) of these patients have followed this path:

- years sick without diagnostic
- lyme diagnostic - hope ahead!
- treatment with a LLMD
- treatment inside a clinic
- treatment with another LLMD
- [repeat the last few rows a few times]
- out of money
- treatment on their own
- prayer

i am just trying NOT to reach the last bullet...

don't get me wrong, im not saying u cannot be your doctor. but if u get really sick and have difficulty reading and writing, you will have trouble reading research articles or new treatments, and i have failed to see doctors that don't keep up to date with their medical field and yet have good results with their patients.... so again ... very risky ...
Posted 9/4/2017 3:40 PM (GMT 0)
Doxy four years on your own? - not a good idea. Common sense applies too.

When I mean be your own Dr- I really should say learn as much as you are able and become your own health manager.

Herbs are safer to do on your own. And supplements can really help symptoms.

The reason I always promote clean diets - is that its free for you to try.

I am somewhat convinced that the longer you have this, certain changes happen to the body which may never completely heal. Its hard to accept this, but then I remember I've already outlived some I knew from the past (and they didnt have lyme).

Even though I dont like fixing cars anymore, its unfortunate that sometimes thats a better choice than some called professionals. Some people are just more familiar with their bodies or their stuff than someone on the out side- and that totally makes sense in some cases.
Posted 9/4/2017 5:04 PM (GMT 0)
Thank you all for your support.
I was indeed hoping my LLMD would show me what to do and be better in "no time". I probably need to reset my mindset for a long struggle instead of a sprint.

Are you "healed" astroman, since you are fine tuning as you call it in your signature? I am really interested to know if you had your best progress while on abx or herbals. Very good job you are doing to stay around here and give advice to all the lost people.

Yes mpost, I think i read her blog as well. Claimed to be better for a while, but ended up worse than ever.

goshawk, sorry I didn't see your pst at first. Yes, I will try to keep the hope up, but you probably know as well as me that it's hard sometimes. Especially unmotivating to not see progress from the diet restrictions. I really do wonder if there's any point to it at all. Thanks for the advice on milk thistle. I will mention it for my LLMD tomorrow.
Posted 9/4/2017 5:34 PM (GMT 0)
Sorry you aren't seeing the results you had hoped for! I'm still very early in my treatment , so I don't feel I can offer treatment suggestions/ or experiences. I do feel that following your intuition is important! Sometimes I think Lyme has messed with my intuition though!

I totally agree about each individual person knowing their body better than any doc ever could. Maybe I feel so strongly about this b/c I also have Ehlers Danlos Syndrome . It's a congenital condition, so I grew up paying an excessive amount of attention to my body& trying to explain constant subluxations, dislocations , & pain to doctors who didn't want to believe me until both shoulders were fully dislocated for 2 years straight.

But I would think that after the many years some of us have suffered with Lyme & co. most of us on this forum would also have become very attentive to the changes & goings on in our bodies.

I'm still on the fence about using an LLMD vs. a natural practitioner who treats Lyme ... I also have begun herbal treatment myself. It's comforting to think a medical professional of some sort is overseeing my treatment, but considering the many bad experiences I've had w/ doctors in general ( not just for Lyme), I think its really important to research all we can and be our own advocates as well.

Best of luck making these difficult treatment decisions! I'm trying to do the same & it can be scary!
Posted 9/4/2017 6:00 PM (GMT 0)
Casa, I'm sorry to hear you have another health struggle as well. Good to hear you have started with the herbs though. Doctors can really piss you off yes, especially for you since it's not your first time around

I'm sorry, I don't have the answers for you either. How long have you had lyme? If it's for a long time, then I probably would consider herbs as a first trial, and move to antibiotics if it doesn't work. If it's a recent infection I think it makes sense to throw as much as possible on it as you can.


In my case, maybe I was to late with the antibiotics. Maybe I even had lyme for years without knowing it.
Posted 9/4/2017 6:14 PM (GMT 0)

RedLabel said...

Yes mpost, I think i read her blog as well. Claimed to be better for a while, but ended up worse than ever.

yes and for the record, i found her blog. Worth reading for anyone that plans to self treat using antibiotics

owndoc.com/lyme/the-best-treatment-for-lyme-disease-pulsing-doxycycline/

the last entry is:
"UPDATE
After nearly a year of taking frequent long breaks (days to a couple of weeks) between taking antibiotics, I find myself slowly deteriorating, and every time I am on antibiotics, the "herx"-like symptoms increase. So, sadly, the approach described above is not a panacea and great care should be taken not to lose progress gained over years of non-interrupted treatment.
"

conclusion: just down take antibiotics on your own, especially on long term, you can experiment with herbs, following a herbalist book.

probably if u just got bitten and can take doxy for a month, while u search for a LLMD, that should be ok, but treating yourself years with abx DOES NOT WORK, and here's the proof above...
Posted 9/4/2017 6:14 PM (GMT 0)
Red-

I seemed to stop the progression. Most days are a lot better. I function pretty well in my personal life, work still brings limitations. I had almost all lyme symptoms I've read about here - but thru will power did my best to stay one step ahead and off the couch and changed jobs to keep money coming in. Certainly was not easy, so I understand peoples internal struggles with this.

The two most important things I've learned that matter are - diet (gut health) and stress. Both can make a good day turn worse. Our minds are so reminded of the past ills with this that erasing our memories would do us some good LOL. Example: The day I woke blind I started hating going to sleep - what else would I wake to? People dont like to mention the mental aspect of chronic illness- but its a big one.

In all honesty since my bulleseye rash was 25-30 years ago, I believe there has been some damage done. So I cant say i'm healed, just that I hope to heal more. Muscles and nerves can be physically damaged from this and there is not much info on fixing it other than time. I refuse to blow my retirement savings on more Drs that are just guessing with my money - I seen what that does to people and they are totally screwed now.. I'm no kid, thus retirement is something to plan for.

I did abx for one year, because like you, I assumed an LLMD would make me all better in one year or less. Most llmds do abx, not herbs.

Post Edited (astroman) : 9/4/2017 12:21:32 PM (GMT-6)

Posted 9/4/2017 6:33 PM (GMT 0)

RedLabel said...

I did look for buhner herbs online before I went to augsburg, but almost none of the sites he recommends ships to Europe. I ended up buying some stuff at iHerb, but don't know how good those are (NOW brand). Do you know of a good place to buy? I reckon you're in Europe?

yes RedLabel, i do. There u go:

www.bristolbotanicals.co.uk/ (UK, ships to EU countries)

/lymeherbs.eu/ (this is a polish firm, they have the site certificate expired but it works if u click on "proceed, unsafe")

greendragonbotanicals.com/ (these guys are from US but ship to europe, and have the greatest JK that i ever tried, absolutely awesome. But they are not cheap).

you can use these to order the "weird" buhner herbs that you will not find on iherb. like isatis, sida, houttuynia, alchornea, etc...

the rest of the herbs i take from iherb too, they are awesome and delivery to europe is quite cheap.

i also used the services of this guy
/www.etsy.com/shop/HerbalLymeSolutions
very good CSA tincture, and u get two anti bart herbs (sida+alchornea) plus crypto which works on both babesia and lyme...

good luck

Post Edited (mpost) : 9/4/2017 12:37:07 PM (GMT-6)

Posted 9/4/2017 6:41 PM (GMT 0)
Good to hear you are working. Me too, but I do get stress at work and am thinking about finding something else, less stressful. I'm only 30 and just started my career, so I have to continue that. I do find the mental aspect really bad as well. Thinking and overthinking everything. Before this I never would have imagined seeing a therapist, but now it seems like a really good idea.

I might want to make a push for herbs, but it's not so easy getting it in my country. Restrictions on everything and goods getting pulled out in customs.
Posted 9/4/2017 7:20 PM (GMT 0)
Thanks a lot mpost. Those look like some good places although the layout of at least the first one could need some refurbishing.

I will surely use them if I decide to go herbal.
Are you switching to your own herbal mix after two years of taking the herbs from the clinic? Didn't you find them effective at all?
Posted 9/4/2017 8:25 PM (GMT 0)

RedLabel said...

Are you switching to your own herbal mix after two years of taking the herbs from the clinic? Didn't you find them effective at all?

well the nature of the disease changed. when i was admitted it was highly inflammatory, could feel my entire body , skin, and gut painful, i had digestion issues and very often heart palps. but i had no problems with my brain, eyes. i had really bad arthritis in one knee. i was also often getting tired.

now my gut is healed, heart is fine, and no longer i feel tired. BUT i have days when i cannot read well (yes yes been to several eye docs, it's not the optics it's inflammation of the eye that comes and goes), during noon i have double vision and brain fog, which goes away in the evening. arthritis is now generalized almost all my joints hurt.

i read long before having symptoms that the bacteria gets to joints heart and eye and survives there because the immune system cannot get it and i always said "well i caught it before it spread that deep". well now it is exactly there and getting worse, while i am on treatment with the herbs.

so no, i don't think their herbs work, for me this is worse than when i was tired had serious gut/digestion issues and heart palps. because i work at a desk with a computer i need my eyes and brain more than i need my gut, and i was ok with some heart palpitations too ... so i consider it treatment failure. i explained this to the doctor at the clinic which was still insisting in giving me some new herb they had for chlamydia. so i kinda asked for antibiotics and explained i will lose my job if this continues...
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