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Chris12321
Regular Member


Date Joined Jul 2017
Total Posts : 68
   Posted 2/9/2018 2:14 PM (GMT -6)   
Hey everyone, an update from me.

My LLMD wants to take me off antibiotics before next meeting, 7th of March. She means that I'm ready and that all the herbs/supplements I'm taking will fix the rest.

I'm currently struggling with many itchy rashes in my face, brain fog, cold limbs(knees, feet and hands) and I really don't feel ready to get off the antibiotics.

According to LLMD I have Mycoplasma, Babesia, Bartonella, Strep(A) and Lyme. Coxs virus is also present according to test but cmv is not.

She noticed thrush on my tongue and suspected Candida, which I think have gotten much worse and hasn't been focused on enough.(High Glucose, Thrush, Brain fog, Rash. All symptoms of candida according to Dr. Horowitz)

She mentioned that Lyme, Bartonella and Babesia have all been debulked, but strep and mycoplasma have gotten worse.

Also I haven't heard a lot about the supplements/herbs I currently take, which I find very weird. She mentions that you can't clear the infection only through Buhner's procotol and the herbs are too weak.

She's telling that these herbs/supplements are the best that she's selling from her store. But they're pretty expensive.

Monopure 1300, Bio Allay, Tf L+, Pro Biomax 350, Perilla Pearls and ADP from her store. Additional from amazon are vitamin A, B5,B6,B-active, D3, E. Other supplements I'm buying off amazon are magnesium malate, milk thistle, curamin/Reservetrol.

I'm functioning pretty good, tough exercise 3x a week but I was also okay, maybe even a bit better when I was on Buhner's and antibiotics and not all the other stuff.

With all this stuff, would it be wise for me to stop the antibiotics? I really REALLY want to trust her, but this is my life at risk.

She mentions that she can fix me before I go back to Denmark in August, which is amazing to hear, but also almost too good to be true...

This ended up being a long post, if you have knowledge on one of the things, please comment, it's greatly appreciated!

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32601
   Posted 2/9/2018 3:10 PM (GMT -6)   
How long did you treat?

And how long were you sick before you started?


How was your babesia treated?

(sorry for all the questions)
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Chris12321
Regular Member


Date Joined Jul 2017
Total Posts : 68
   Posted 2/9/2018 3:48 PM (GMT -6)   
I have been with my llmd since mid October but didn’t start the actual treatment until end of November. I have been on Buhner since August

Compared to other lyme patients I have been surprisingly well over the years. I had injuries that occurred from lyme but other than that I didn’t have any severe symptoms. Only last year after being bedridden from a flu, it felt like everything started.

Muscle twitches, pain behind eye, brain fog etc.

I have felt hot a couple of times, but other than that I haven’t shown big symptoms of babesia.

The antibiotics I have been on are omnicef, doxycycline, Zithromax. We only found out for sure about babesia(according to llmd) that I have babesia and bartonella. But she says that they’re all drilled, so I guess we haven’t targeted a babesia treatment.

Chris12321
Regular Member


Date Joined Jul 2017
Total Posts : 68
   Posted 2/9/2018 3:50 PM (GMT -6)   
I think it occurred in 2012 or 2014. But as I said, I have been doing amazing up until mid 2017.

It is greatly appreciated Girlie, ask as many questions as possible!

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32601
   Posted 2/9/2018 4:39 PM (GMT -6)   
Chris12321 said...
I have been with my llmd since mid October but didn’t start the actual treatment until end of November. I have been on Buhner since August

Compared to other lyme patients I have been surprisingly well over the years. I had injuries that occurred from lyme but other than that I didn’t have any severe symptoms. Only last year after being bedridden from a flu, it felt like everything started.

Muscle twitches, pain behind eye, brain fog etc.

I have felt hot a couple of times, but other than that I haven’t shown big symptoms of babesia.

The antibiotics I have been on are omnicef, doxycycline, Zithromax. We only found out for sure about babesia(according to llmd) that I have babesia and bartonella. But she says that they’re all drilled, so I guess we haven’t targeted a babesia treatment.


Well, I wouldn't stop treatment if you haven't addressed babs and bart effectively. Unless you are symptom free. You need an anti-malarial type med for babs. (mepron or malarone are most commonly used)
Were babs and bart a clinical diagnosis...or testing showed it?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Chris12321
Regular Member


Date Joined Jul 2017
Total Posts : 68
   Posted 2/9/2018 5:06 PM (GMT -6)   
I agree, I wouldn’t stop either. But I’m still in a lot of herbs and supplements , so it’s a antibiotics break

Both were clinical, I have had white horizontal stretch marks and cramping in soles(bart) and I have been hot a couple of times, and a little nights sweat in the summer, with a pretty hot room

So you don’t think the herbs are enough, when I’m in my current state?

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32601
   Posted 2/9/2018 6:06 PM (GMT -6)   
Chris12321 said...
I agree, I wouldn’t stop either. But I’m still in a lot of herbs and supplements , so it’s a antibiotics break

Both were clinical, I have had white horizontal stretch marks and cramping in soles(bart) and I have been hot a couple of times, and a little nights sweat in the summer, with a pretty hot room

So you don’t think the herbs are enough, when I’m in my current state?


If you do switch to herbs - make sure you cover Bart and Babs - I would start the herbs soon - it will take a while to add them in and titrate up.
Many people do well on herbs.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Chris12321
Regular Member


Date Joined Jul 2017
Total Posts : 68
   Posted 2/9/2018 6:09 PM (GMT -6)   
My llmd mentioned folliculitis as the cause of my rashes, but rashes doesn’t look like it.
And the foggy-ness and thrush makes me very suspicious, that all my current symptoms is Candida.
As I mentioned as well my glucose was also pretty high...

She mentioned it in December, right around when the rashes started to get really bad.

k07
Veteran Member


Date Joined Sep 2015
Total Posts : 2501
   Posted 2/9/2018 6:12 PM (GMT -6)   
Sounds like bart but I'm not so sure about babs. Hard to say you have babesia from a few sweats in hot room. But you do say you are cold, so that could be temperature dysregulation.

Taking a break, especially if you have candida, is probably a smart idea. Plus you have the herbs on board. Are you taking a good probiotic? You may need diflucan or pure nystatin to combat the yeast.

As for the supplements - looks like one is transfer factor lyme plus and I noticed a few Xymogen products. I am not sure if this is enough to be considered a herbal protocol. I could be wrong though - I never took transfer factor. Do you think she would be open to letting you add the buhner herbs back in? If you felt good on them that is what I would do.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32601
   Posted 2/9/2018 6:51 PM (GMT -6)   
What you currently listed - is that your herbal treatment?

If so, I'm thinking the same as k07 - Add some buhner herbs in as well.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Chris12321
Regular Member


Date Joined Jul 2017
Total Posts : 68
   Posted 2/9/2018 7:06 PM (GMT -6)   
Yes, those are all my herbs.

I have always trusted Stephen, so I asked my LLMD about taking his herbs. She didn't mind, but "at this point, it wouldn't do much good. Her herbs are much more strong." But I'm taking Andrographis 3x a day at a low dose, as well as cat's claw from time to time. I have run out of Astragalus, but I have considered getting more.

Chris12321
Regular Member


Date Joined Jul 2017
Total Posts : 68
   Posted 2/9/2018 7:11 PM (GMT -6)   
Exactly. I'm taking the best probiotic called Pro Biomax 350. It's crazy expensive, 14 days for $100 so I'm taking it every 2. day.

Otherwise it's pretty decent probiotics.

I agree k07, I forgot to tell, that was her intention as well, before the candida gets really bad.

So you know these products? Because I have searched for other people taking it, but couldn't find many... I hope it's good compared to the price.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32601
   Posted 2/9/2018 7:36 PM (GMT -6)   
Chris12321 said...
Exactly. I'm taking the best probiotic called Pro Biomax 350. It's crazy expensive, 14 days for $100 so I'm taking it every 2. day.

Otherwise it's pretty decent probiotics.

I agree k07, I forgot to tell, that was her intention as well, before the candida gets really bad.

So you know these products? Because I have searched for other people taking it, but couldn't find many... I hope it's good compared to the price.


I took a quick look at your supplements - what in particular is she saying will be for bart and/or babs?
Re: Buhner herbs...I would add in bart...and then babs...maybe mycoplasma...as well.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

dacarte3
Veteran Member


Date Joined Feb 2016
Total Posts : 1897
   Posted 2/9/2018 7:57 PM (GMT -6)   
I think taking breaks and then eventually stop taking ABX is the way to go at some point in time, for a person can't take ABX forever.

But the huge question is when is that time? People can debate that forever.

I didn't stop taking ABX until I reached what I felt was 70-80% well. ABX is a powerful punch to lyme, while herbs are little jabs.

But after you throw several haymakers at lyme (ABX) at some point moving to "Death by a thousand jabs" will have to come into the equation at some point.

Your LLMD is wrong if he or she in fact stated that herbs will not work (as if it's an absolute fact). What I hope they meant was it's much slower.

It's thousand little jabs at lyme and lyme herbal protocols are supposed change your biological functions (for the better). Biological changes by nature are slow (but happens).

A person doesn't go from overweight to ripped after only a few months of working out. A smoker's lungs doesn't clear up and get a lot healthier in a just a few months. A torn ACL takes several months to over a year to fully recover, etc.

When you are dealing with changing and repairing biology on a cellular level through herbs you have to look at it the same way. 1-2-3 years, to make a biological transformation.
Lyme (Igenex) - Positive IFA and WB bands 23, 31, 41
Ehrlichia (Igenex)
Mycoplasma (Labcorp) - Score: 595

ABX Treatment: 03/2016-04/2016; 7/2017-9/2017
Buhner Protocol for Borrelia, Babesia, Bartonella and Mycoplasma (treating everything to be on the safe side): May 2016 - Dec. 2016; 8/2017 - Present

B99
Regular Member


Date Joined Sep 2016
Total Posts : 94
   Posted 2/9/2018 9:18 PM (GMT -6)   
Keep in mind that milk thistle interferes with Mepron and Malarone, the meds used to treat babesia. If you do start either of these down the line, you can take dandelion root instead of milk thistle to support the liver.

If you have time and energy, making your own kefir is a fantastic way to get living probiotics. It costs what the milk does. It needs to be made from real kefir grains, not the powder stuff sold in health food stores. The grains are available online. I managed to get some from a cheese maker at a farmers market. Youtube has tutorials. Easy to do.

Our LLMD didn't think it would be a problem when our daughter took a 6 week break from antibiotics. We were all nervous about it but she didn't get worse. She resumed them again afterwards.
College age daughter diagnosed with Lyme, babesiosis, possible bartonella. Infected for a couple of years before being diagnosed and had advanced neurological symptoms. We used antibiotic and herbal protocols. She is done with treatment, and is now working through PTSD and adrenal fatigue.

PeteZa
Veteran Member


Date Joined Jul 2015
Total Posts : 9729
   Posted 2/9/2018 10:10 PM (GMT -6)   
I so dislike a doctor telling me that their herbs are the best and I HAVE to buy from them.

That is such a huge red flag for me.

Sorry, I just had to comment on this.

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 1677
   Posted 2/10/2018 10:48 AM (GMT -6)   
Chris12321 said...
Yes, those are all my herbs.

I have always trusted Stephen, so I asked my LLMD about taking his herbs. She didn't mind, but "at this point, it wouldn't do much good. Her herbs are much more strong." But I'm taking Andrographis 3x a day at a low dose, as well as cat's claw from time to time. I have run out of Astragalus, but I have considered getting more.


I trust Buhner's, too. He has said that if people do nothing else in his protocols to at least do Japanese knotweed, even with abx. I didn't see that in your list. You did mention resveratrol in your initial post, but I personally would not trust in that. I would only use Japanese knotweed, preferably whole herb from one of Buhner's trusted sources.

Chris12321
Regular Member


Date Joined Jul 2017
Total Posts : 68
   Posted 2/10/2018 12:20 PM (GMT -6)   
So many great responses, thank you so much!

Girlie: The thing is, she mentions that my babs, bart and lyme are not very present at the moment. So she is not so worried about it. She mentions that she can get rid of it all, maybe not the strep, but everything else. If I continue on her list of herbs. But I agree and I already have some of buhner's protocol for co-infections, so I wouldn't mind taking them as well to be sure. Money is only an object, I just want my life back.

The thing is, I don't feel so sick. I have been at points where I'm 95% well, and that is after probably 3-5 years of undiagnosed lyme+co. Which sounds very weird to me. I'm glad not that sick of course! But it kinda tells me that either I have had a superior immun system, that has kept every infection at bay. Or it tells me that I don't have as many co-infection as she states.

Dacarte3. In the beginning she stated that antibiotics is necessary, which is pretty much true. A lot of people do best on herbs AND antibiotics. Especially Buhner's. But she's saying that they wouldn't be strong enough to kill the lyme and co-infections completely. I somehow disagree with that, especially when so many have gotten healed from Buhner's.

B99, I will start to look into it! I have a lot of free time and I feel pretty good, so I am in for some cheap alternatives

PeteZa I absolutely agree! I the beginning she was referring to her shop, now she tells me that I have to buy some of them and some other's I can buy on amazon. I think I bought 5 products for $300, almost as much as the consultation itself. So both me and my wallet were very depressed after we left the clinic.

WalkingbyFaith, I have heard so much good from JK, but I haven't been responding that good on it unfortunately. I got a very upset stomach. But maybe back then, I didn't take any probiotics? Hmm... maybe I'll give it another shot, but once again. The LLMD told me not to start on JK again. Because of my response

1000Daisies
Veteran Member


Date Joined Apr 2016
Total Posts : 2437
   Posted 2/10/2018 1:05 PM (GMT -6)   
Chris12321 said...

Dacarte3. In the beginning she stated that antibiotics is necessary, which is pretty much true. A lot of people do best on herbs AND antibiotics. Especially Buhner's. But she's saying that they wouldn't be strong enough to kill the lyme and co-infections completely. I somehow disagree with that, especially when so many have gotten healed from Buhner's.



My kids did not do well on abx at all. They healed (or are improving) by stopping abx and doing other things. In fact, abx made one of my kids way worse and failed to help him (he was so sick and nonfunctioning that he couldn't go to school for a really long time). When we stopped abx and did alternatives, he started improving. I deeply regret all of the abx that my kids were on over the prior years for this disease.

I also know somebody who isn't able to work. Has been on years of abx and was just thrown more and more abx at him. He just got worse and worse. FINALLY - a new doctor wised up! Took him off all the abx (thank goodness) and switched him completely to herbals and other supplements. He is doing a bazillion times better now.

Just as there are stories of these, there are other stories where people don't do well on herbals but greatly improve on abx.

So, my point is...
I think it's important to find what works for you individually - whether it's abx, herbals, or a combination of both. I am very grateful that we have options and don't have to rely sololy on abx. I think the jury is still out on what is "best", and there are certainly a lot of opinions and experiences of such.
Kid#1: Extremely sick for several years, very difficult to treat, but doing great now!
Kid#2: Still sick now despite being treated for years but doing better (not well yet).
Kid#3: Generally good but relapsing off/on.
Me: Adv Labs positive 2016 (suspected I passed to my kids)-not as sick as others, mostly battling fatigue and yeast issues (heart/kidney issues resolved)
Treating with herbals now.

Post Edited (1000Daisies) : 2/10/2018 12:09:00 PM (GMT-7)


Chris12321
Regular Member


Date Joined Jul 2017
Total Posts : 68
   Posted 2/10/2018 1:41 PM (GMT -6)   
That’s good to hear, 1000Daisies!! Hopefully my llmd knows that as well... I had muscle twitches in my left leg 5 days prior to abc. It lasted for 30 min and came back the day after. Which was scary because it had never been that serious. The twitches stopped the day after the abc started.

It could have been from the bart, so that’s why the lyme protocol didn’t do the trick

Missouri
Regular Member


Date Joined Sep 2017
Total Posts : 336
   Posted 2/11/2018 9:41 AM (GMT -6)   
Hey Chris I really appreciate and enjoy reading your updates. I'm kinda like you I am able to exercise and function most days and work a full time job. And like you, I was never super sick. Don't get me wrong my symptoms were definitely impacting my life significantly, but I was never house or bed bound.

I am hovering at 80-90% recovered and also am a little unsure of the best route to take.

My LLMD says twitching needs to be gone two months before stopping abx. Every antibiotic break I have taken has resulted in severe twitching about 8-10 days into the break.

Right now I'm on Minocycline and I have added a simple herbal blend (Samsara Tick Recovery) Jap Knot, Sida Acuda, Houttyuna, etc blend.

Like you, I am also suspicious of Bart too. I am going to be starting Rifampin in a couple weeks.

Regarding your topic headline of trusting your LLMD... It's hard to do isn't it? I am a skeptical, scientific minded person by nature. Sometimes I have difficulty trusting my LLMD, but at the end of the day, I do trust we are on the right path.

It sounds like your LLMD is on the same track as mine, which may serve as some kind of validation for you. I am not sure about the herbs/supplements they sell. I would be super skeptical if they said they have proprietary or exclusive products in the LLMD office.

Chris12321
Regular Member


Date Joined Jul 2017
Total Posts : 68
   Posted 2/13/2018 8:47 PM (GMT -6)   
Hi Missouri, thanks for the response!

That’s good to know, I’m really looking forward to the break to see where I stand.

You’re right I don’t have much of a choice at this point but I definitely have some questions for her at the next meeting.

Once again, thank you all for your contribution, it means a lot!
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