HealingWell
Search Close Search
☰

Questions regarding antibiotic treatment

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 5/20/2017 8:34 AM (GMT -5)
Good morning!

I'm hoping someone can help me out with my antibiotic protocol. I've been seeing a LLMD since November of last year but have lost faith in his knowledge and treatment approach. When I first started with him, he put me on a super low dose of Doxycycline (50mg/2x/daily) for several months (as well as Valtrex and numerous supplements). Eventually he added Biaxin which I took with the Doxy for a few months. I eventually asked him if he could prescribe Rifampin because I was having not much in the way of improvement and he agreed (150 mg/2x daily) and prescribed Mino but again, it's a low dose (50 mg/2x/daily).

Last month I decided to seek a new LLMD for a second opinion (for me and my husband) and he just prescribed Omnicef (300 mg/2x/daily) and that's it. He said that in a month he will probably add another antibiotic (I believe he said Plaquenil!?!).

To be honest, I don't know what to do here. Between these two doctors I don't really feel a sense of confidence in their approaches. Neither of them really addressed biofilm/cyst busting and with both of them I was the one to ask about these. I did my own research and decided to add in Serrapeptase myself. But is that enough? I don't even know. I've considered combining the meds that they've both prescribed but I don't want to overdue it or have any drug interactions and make myself sicker. But at the same time I've been sick for so long and I'm getting super frustrated with doctors and don't want to under treat this stuff either. I feel like let's get on with killing this crap already! I just feel really lost and unsure of the best route to take now. I've considered trying one more LLMD that I've heard of for a 3rd opinion with the hopes that maybe the 3rd times a charm... but honestly, I'm about ready to throw in the towel with doctors and treatment. I'm sick of being sick.

Any input, comments, thoughts would be greatly appreciated. Thank you!
Posted 5/20/2017 8:40 AM (GMT -5)
Well, I can certainly understand your frustrations! Is it possible that they are just trying to take it slow with you?

I don't know enough about the abx to comment, but what about adding in an herbal protocol? That would allow you to stick with the LLMD that you like the best, and keep you covered for the infections. Several of the herbal protocols are safe with many of the abx that are used.
Posted 5/20/2017 8:51 AM (GMT -5)
Traveler,

Thanks for the reply!

It does seem that both like to take the slow and steady approach which, isn't necessarily a bad thing, but... I'm too the point where I'm seriously questioning if either of them know how to treat this stuff effectively. I do have MTHFR so I know that it's not wise for me to overdo it, but, I want to have faith that what I'm doing is actually working to do SOMETHING. I feel like after treating now 6 months we can bump things up a notch especially since I'm not making great strides in feeling any better than I did before I started treatment. It's just so frustrating. The first guy seems to have a fairly decent grasp on the importance of supplements, while this new guy didn't have a whole lot to say about what to take in addition to the one antibiotic he prescribed. It's like... who do you believe? Who knows best? I'm at a complete loss.

I have considered adding in an herbal protocol but there again, I'm not entirely sure which one would be the best one to try. And I'm still left with do I stop the Rifampin/Mino that I've been taking and just take the Omnicef or do I simply add the Omnicef to the combo I'm already on?

As you can see I'm a confused mess over here. 😢
Posted 5/20/2017 9:14 AM (GMT -5)
I'm so sorry, Lyme_mama!! It IS confusing when we are left on our own! I'm sure that others that know a lot more than I do about the abx will be along shortly though, and then you can use their input to help you make a decision on what to do about the abx.

As for the herbal protocols, does one "sound right" for you? Do you feel like one may work better for you?
There are advantages to each of them. Buhner's is good, works for most who try it, and is very customizable to your specific symptoms/infections.

Cowden's is more 'strict' in that there is a set protocol for each person, it's all laid out as to what you take and when. It's been effective (at least to a point) for most that I have seen here. It doesn't seem to address the other infections other than Lyme well for many, but can be very effective if it does work.

Beyond Balance is a little less strict than Cowden's, and it uses herbal combinations to help heal, rather than introducing single herbs like Buhner's does. It seems to be pretty potent for many, and many need to start off on low doses. Generally you need a doctor to order this for you, but I believe there is one place that sells without a dr's order, I just don't remember where - sorry!

There's Byron White products and they are very potent for most who use them. They too are combination herbs products, and most need to start off on low doses on this as well. For this, you need a doctor to order it for you.

I used the chronic tonic - which admittedly doesn't work for everyone, but often works for those that the other herbal protocols don't work - for some reason. This can be very powerful for some, and for others it's an easier protocol to stick to, but it's only effective for Lyme, so a person would need to add in Houttuynia for Bartonella, and then find a Babesia treatment if needed.

The one thing that is universal no matter what protocol you choose - you must have confidence in your doctors!
Hang in there!
Posted 5/20/2017 9:19 AM (GMT -5)
AHA! I forgot that Pirouette posted a break down of the different herbal protocols (much more detailed) in this thread (until I saw it this morning! LOL!)

You can find it here: www.healingwell.com/community/default.aspx?f=30&m=3851229
Posted 5/20/2017 12:15 PM (GMT -5)

Lyme_mama227 said...
Good morning!

I'm hoping someone can help me out with my antibiotic protocol. I've been seeing a LLMD since November of last year but have lost faith in his knowledge and treatment approach. When I first started with him, he put me on a super low dose of Doxycycline (50mg/2x/daily) for several months (as well as Valtrex and numerous supplements). Eventually he added Biaxin which I took with the Doxy for a few months. I eventually asked him if he could prescribe Rifampin because I was having not much in the way of improvement and he agreed (150 mg/2x daily) and prescribed Mino but again, it's a low dose (50 mg/2x/daily).

Last month I decided to seek a new LLMD for a second opinion (for me and my husband) and he just prescribed Omnicef (300 mg/2x/daily) and that's it. He said that in a month he will probably add another antibiotic (I believe he said Plaquenil!?!).

To be honest, I don't know what to do here. Between these two doctors I don't really feel a sense of confidence in their approaches. Neither of them really addressed biofilm/cyst busting and with both of them I was the one to ask about these. I did my own research and decided to add in Serrapeptase myself. But is that enough? I don't even know. I've considered combining the meds that they've both prescribed but I don't want to overdue it or have any drug interactions and make myself sicker. But at the same time I've been sick for so long and I'm getting super frustrated with doctors and don't want to under treat this stuff either. I feel like let's get on with killing this crap already! I just feel really lost and unsure of the best route to take now. I've considered trying one more LLMD that I've heard of for a 3rd opinion with the hopes that maybe the 3rd times a charm... but honestly, I'm about ready to throw in the towel with doctors and treatment. I'm sick of being sick.

Any input, comments, thoughts would be greatly appreciated. Thank you!

Starting out on lower dosages is fine...but you should be ramping up to the required dosages.
Several months of doxy at 50 mg twice daily isn't enough...

For Omnicef - I have seen posts of 1200 mg daily. (and have also seen 600 mg daily)

I think if you want to do antibiotics...then you will need to either discuss higher dosages with your present LLMD...or switch again.

Sorry you are having to deal with this...you shouldn't have to worry about the antibiotics being the correct dosage.
Posted 5/20/2017 1:20 PM (GMT -5)
Traveler- Thank you for all the info on herbal protocols. The one I'm most familiar with is Buhner's but admittingly, I don't know much about the others. I'll look into them and try to figure out which one might suit me best. smile

Girlie- I have discussed the doses with both doctors. Both of them seem to think 100mg of Doxy 2x/ day is adequate. The second guy said based on my weight/size that is about as high as he would go for me (if he were to prescribe Doxy again). I'm beyond frustrated because it seems to me, from all the many posts I've read here that most people get up to much higher doses of all the antibiotics I've been on thus far. I honestly don't know what to do other than possibly try yet another doctor but I'm really really starting to lose faith in all doctors at this point. sad

I've been trying to do some research myself on the antibiotics I currently have on hand. I'm thinking I may just have to figure this out for myself for now (with hopefully a little help from you guys!). I guess my questions are...

1. Does anyone know what the dose of Minocycline should be? Right now I'm taking just 50mg/2x daily but if I have to double up on them, I will.

2. I'm currently taking Rifampin. 150mg/2x/daily. Seems like most people work up to a higher dose of this as well!? I will say that this one seems to hit me harder than all the others I've been on. My pain levels are more intense on Rifampin so I'm unsure if I should attempt a higher dose of this one or not. !?!

3. The Omnicef. Should I try adding this to what I'm currently taking? I've tried searching for posts here and have seen a few people being on all 3 of these medications at once, however, some seem to pulse the antibiotics and I'm clueless as to how to do this.

I'm angry that I have paid these two doctors SO much money and yet feel like I'm being under treated. For the amount of money they charge, I shouldn't have to try to figure all this out for myself. But I feel like I've hit a wall with both of them. The first doctor told my husband he did not have LD based on his Igenex test while the other guy says he believes he does have it. You can never get the same answers from any of the so-called experts. Argh. 😑

Post Edited (Lyme_mama227) : 5/20/2017 12:25:57 PM (GMT-6)

Posted 5/20/2017 2:05 PM (GMT -5)

Lyme_mama227 said...
Traveler- Thank you for all the info on herbal protocols. The one I'm most familiar with is Buhner's but admittingly, I don't know much about the others. I'll look into them and try to figure out which one might suit me best. smile

Girlie- I have discussed the doses with both doctors. Both of them seem to think 100mg of Doxy 2x/ day is adequate. The second guy said based on my weight/size that is about as high as he would go for me (if he were to prescribe Doxy again). I'm beyond frustrated because it seems to me, from all the many posts I've read here that most people get up to much higher doses of all the antibiotics I've been on thus far. I honestly don't know what to do other than possibly try yet another doctor but I'm really really starting to lose faith in all doctors at this point. sad

I've been trying to do some research myself on the antibiotics I currently have on hand. I'm thinking I may just have to figure this out for myself for now (with hopefully a little help from you guys!). I guess my questions are...

1. Does anyone know what the dose of Minocycline should be? Right now I'm taking just 50mg/2x daily but if I have to double up on them, I will.

2. I'm currently taking Rifampin. 150mg/2x/daily. Seems like most people work up to a higher dose of this as well!? I will say that this one seems to hit me harder than all the others I've been on. My pain levels are more intense on Rifampin so I'm unsure if I should attempt a higher dose of this one or not. !?!

3. The Omnicef. Should I try adding this to what I'm currently taking? I've tried searching for posts here and have seen a few people being on all 3 of these medications at once, however, some seem to pulse the antibiotics and I'm clueless as to how to do this.

I'm angry that I have paid these two doctors SO much money and yet feel like I'm being under treated. For the amount of money they charge, I shouldn't have to try to figure all this out for myself. But I feel like I've hit a wall with both of them. The first doctor told my husband he did not have LD based on his Igenex test while the other guy says he believes he does have it. You can never get the same answers from any of the so-called experts. Argh. 😑

Your post said doxy 50 mg twice daily....was it actually 100 mg twice daily? (still low, but not as bad...)
Are you low weight? when I was on doxy 200 mg twice daily, I was 126 lbs.

Mino dosage = 100 mg twice daily.

Yes, Rifampin should be 300 mg twice daily OR 600 mg once daily. How long have you been on the 150 twice daily?

Yes, I've also seen Omnicef, Mino and Rifampin together.

Pulsing does allow more antibiotics to be taken together as you have the drug 'holiday's to recover.
Posted 5/20/2017 4:48 PM (GMT -5)
Girlie-

Initially, with the first Doctor started me on 50mg/2x/daily and I was on that dose for 2-3 months (then he added Biaxin and bumped it up to 100 mg/2x daily). I was on that dose for a few months.

I'm not underweight. I used to be, but since this nightmare began I've gained about 12-15lbs so I'm now around 123lbs (5' 2").

I've been on the Rifampin for a few months although when I first met with this new doctor he asked me to take a break from all antibiotics (I guess he wanted to see how I felt being off of all of it!?) so I did stop for about 2 weeks and started taking them about 2 weeks ago. So, I guess I've been on 150mg/2x daily of the Rifampin for roughly 2 months.

Sounds like, for whatever reason, the doses of everything I've been prescribed is too low. sad. Are these doctors trying to keep me sick? Sometimes I wonder! The first guy I was referred to by the ILADS website. The new guy, while I don't believe he's ILADS per say, according to the paperwork he gave me, he subscribes to the ILADS protocols. But doesn't follow them. I guess. !?!
Posted 5/20/2017 4:54 PM (GMT -5)
So, if you're not herxing badly - then you should be ramping up your dosages to the required amount.

Two months on the half dose of Rifampin - is more than enough time....you should be at least go to 300 and 150 for a few weeks...then 300/300.

so 123 lbs - that wouldn't require a lower dosage of doxycycline. (or other meds)

I don't think the Dr.'s are trying to keep you sick...but for some reason they're not up on the proper dosages for lyme.
They are often (or always?) more than what its prescribe for 'other' infections.
Posted 5/20/2017 4:55 PM (GMT -5)
So - progress for you so far? nothing - and also no herxing?
Posted 5/20/2017 4:57 PM (GMT -5)
I subscribe to LLMD MR TreatLyme online book:

www.treatlyme.net

Between looking at that...and reading what others on the forum are taking...I check what my Dr. has prescribed.

There's also Dr. Burrascano's Lyme Treatment Guidelines.
Posted 5/20/2017 5:07 PM (GMT -5)
Thanks for the link. I'll check it out!

Yeah, I mean...now that I'm on the Rifampin again (after taking a 2 week break) I do feel I'm herxing in that my pain levels are far more intense. The Rifampin, for me, seems to hit the Bartonella hard. But, like I said before I don't want to be wasting my time under treating either.

I don't understand why I'm not being worked up to a proper dose of anything here. This is why I'm thinking of just doubling up on the meds myself.. at least until I can get in to see yet another doctor who will hopefully be more informed than these two doctors are.

I feel like crying!!!
Posted 5/20/2017 5:48 PM (GMT -5)

Lyme_mama227 said...
Thanks for the link. I'll check it out!

Yeah, I mean...now that I'm on the Rifampin again (after taking a 2 week break) I do feel I'm herxing in that my pain levels are far more intense. The Rifampin, for me, seems to hit the Bartonella hard. But, like I said before I don't want to be wasting my time under treating either.

I don't understand why I'm not being worked up to a proper dose of anything here. This is why I'm thinking of just doubling up on the meds myself.. at least until I can get in to see yet another doctor who will hopefully be more informed than these two doctors are.

I feel like crying!!!

Sorry - I did read that you said your pain levels are more intense...so I would 'step up' the dose - not go to 300 twice daily...but increase one dose to 300 and stay at 150 with the other dose...and detox, detox...
Hopefully, after a couple weeks you can increase the second dose to 300 mg.
Yes, Rifampin does hit bart hard.

Crying? gosh - I have cried so much prior to and now during lyme treatment. I am so fortunate that the members here have helped me with any issues I had.
Don't worry...we can help you...and you can always change your LLMD.

So - are you doing enough detoxing? That is really crucial - you need to get rid of the toxins...created from the die-off.
Posted 5/20/2017 6:32 PM (GMT -5)
Girlie-

Thank you, I so appreciate your help. I think I will take your advice on the Rifampin. Should I also up the Minocycline from 50mg/2x/day to 100mg/2x/day? Then add in the omnicef? I know not to do all this at once, so I'll start with one at a time.

Detoxing... I'm trying. I drink a lot of water (although I haven't been great about doing lemon water), take glutathione and when I can drag my butt in, I use our infrared sauna. I admit, I was really religious about detoxing but the first 3-4 moniths but lately, I think because I'm in such a funk over my health and my doctor situation, I've kindof slacked on it. I know I should do more, but when I get discouraged and don't see light at the end of the tunnel I tend to get lax and my attitude stinks. I start feeling like it almost doesn't matter what I do anymore I'm always going to feel terrible. sad
Posted 5/20/2017 6:44 PM (GMT -5)

Lyme_mama227 said...
Girlie-

Initially, with the first Doctor started me on 50mg/2x/daily and I was on that dose for 2-3 months (then he added Biaxin and bumped it up to 100 mg/2x daily). I was on that dose for a few months.

I'm not underweight. I used to be, but since this nightmare began I've gained about 12-15lbs so I'm now around 123lbs (5' 2").

I've been on the Rifampin for a few months although when I first met with this new doctor he asked me to take a break from all antibiotics (I guess he wanted to see how I felt being off of all of it!?) so I did stop for about 2 weeks and started taking them about 2 weeks ago. So, I guess I've been on 150mg/2x daily of the Rifampin for roughly 2 months.

Sounds like, for whatever reason, the doses of everything I've been prescribed is too low. sad. Are these doctors trying to keep me sick? Sometimes I wonder! The first guy I was referred to by the ILADS website. The new guy, while I don't believe he's ILADS per say, according to the paperwork he gave me, he subscribes to the ILADS protocols. But doesn't follow them. I guess. !?!


Is it possible that these two LLMD's are of the mind to use abx as more of a partner with your own immune system to get your infections under control? It seems like the latest school of thought is that working with the body's own defenses is now preferable to heavy hitting with long term abx.

The fact that your pain levels get so high (herxing as Girlie said) could be a signal your body is struggling to deal with toxic die off as it is.

Post Edited (julymorning) : 5/20/2017 5:54:20 PM (GMT-6)

Posted 5/20/2017 6:49 PM (GMT -5)

Lyme_mama227 said...
Girlie-

Thank you, I so appreciate your help. I think I will take your advice on the Rifampin. Should I also up the Minocycline from 50mg/2x/day to 100mg/2x/day? Then add in the omnicef? I know not to do all this at once, so I'll start with one at a time.

Detoxing... I'm trying. I drink a lot of water (although I haven't been great about doing lemon water), take glutathione and when I can drag my butt in, I use our infrared sauna. I admit, I was really religious about detoxing but the first 3-4 moniths but lately, I think because I'm in such a funk over my health and my doctor situation, I've kindof slacked on it. I know I should do more, but when I get discouraged and don't see light at the end of the tunnel I tend to get lax and my attitude stinks. I start feeling like it almost doesn't matter what I do anymore I'm always going to feel terrible. sad

Are you going to discuss this with your LLMD?

- I would actually up the minocycline first to 100 mg twice daily. Then after a couple weeks increase the Rifampin.

When drinking lemon water - I use a straw - it helps bypass the teeth (lemon can damage the enamel) Rinse your mouth with clear water after drinking the lemon water.

Have you tried Epsom salt baths?
They are my favorite.
Posted 5/20/2017 6:57 PM (GMT -5)

julymorning said...

Lyme_mama227 said...
Girlie-

Initially, with the first Doctor started me on 50mg/2x/daily and I was on that dose for 2-3 months (then he added Biaxin and bumped it up to 100 mg/2x daily). I was on that dose for a few months.

I'm not underweight. I used to be, but since this nightmare began I've gained about 12-15lbs so I'm now around 123lbs (5' 2").

I've been on the Rifampin for a few months although when I first met with this new doctor he asked me to take a break from all antibiotics (I guess he wanted to see how I felt being off of all of it!?) so I did stop for about 2 weeks and started taking them about 2 weeks ago. So, I guess I've been on 150mg/2x daily of the Rifampin for roughly 2 months.

Sounds like, for whatever reason, the doses of everything I've been prescribed is too low. sad. Are these doctors trying to keep me sick? Sometimes I wonder! The first guy I was referred to by the ILADS website. The new guy, while I don't believe he's ILADS per say, according to the paperwork he gave me, he subscribes to the ILADS protocols. But doesn't follow them. I guess. !?!


Is it possible that these two LLMD's are of the mind to use abx as more of a partner with your own immune system to get your infections under control? It seems like the lasted school of thought is that working with the body's own defenses is now preferable to heavy hitting with long term abx.

The fact that your pain levels get so high (herxing as Girlie said) could be a signal your body is struggling to deal with toxic die off as it is.

Dr J's pulsed protocols are designed for that. The drug holidays are when the immune system is supposed to take over. But when you are taking the antibiotics they need to be in high enough doses to kill the bacteria so you can lower the infection load.
Posted 5/20/2017 7:06 PM (GMT -5)
I'm thinking of telling my first LLMD next month when I see him. I was thinking of maybe printing off some of the ILADS info from their website and bringing that with me to show him. He seems like he would be more open to suggestions than the nee doctor. If in the end I can't get either of them to approve me being on normal doses of these meds, I'll try the other doctor I've heard of and hope that she's the one who will truly know how to help me.

I usually do my water in a big jug with a straw. I also have some detox drops that I never take anymore that I used to put in my water along with lemon. I guess I stopped using those because (here comes my negative Nelly attitude) I didn't feel like they did much good anyway.

I do epsom salt baths with some lavendar oil once in a while or foot baths with the salt. I also have some chlorella and charcoal tablets- also things I haven't used in a long time. Wow, now that I think about it I've slacked a lot on my detox! I just haven't found anything that really makes me feel better.
Posted 5/20/2017 7:14 PM (GMT -5)
The detoxing is cumulative - so you may not feel it working right away.. and sometimes the differences are subtle at first.

The charcoal needs to be taken with a few hour buffer - you probably know that... and at least one full glass of water.

You're taking probiotics every day? I take them twice a day.
Posted 5/20/2017 7:17 PM (GMT -5)
Julymorning-

If that is their philosophy, they haven't shared that with me!

The new doctor has told me twice now that he generally expects to see some improvement within the first 4-6 weeks of treatment and seemed kindof surprised that I don't really feel better (some of my neurological issues improved and the shooting pains I used to get disappeared but overall my pain levels haven't improved). I had to remind him twice that I was on a super low dose of my Doxy for 2-3 months. Now I feel upset that I time taking a medication that wasn't doing anything all along.
Posted 5/20/2017 7:27 PM (GMT -5)
Girlie-

Yep, I do take probiotics every day.

I also decided to take Serrapeptase and recently ordered some grapefruit seed extract because I've read these are good at busting biofilm/cysts. Is that correct? From what I can tell, my first doctor doesn't seem to even address these issues and the new doc spent all of 25 seconds discussing it with me (this was after I asked him what I should be taking for these issues). 😡
Posted 5/20/2017 8:35 PM (GMT -5)
You can get minocycline and rifampin and tinadazole from adc on line ...diy ...the only thing that got my joint pain was bvt with rocephin with silver iv
Posted 5/20/2017 9:20 PM (GMT -5)

Lyme_mama227 said...
Girlie-

Yep, I do take probiotics every day.

I also decided to take Serrapeptase and recently ordered some grapefruit seed extract because I've read these are good at busting biofilm/cysts. Is that correct? From what I can tell, my first doctor doesn't seem to even address these issues and the new doc spent all of 25 seconds discussing it with me (this was after I asked him what I should be taking for these issues). 😡

Serrapeptase/lumbrokinase/xylitol/lactoferrin - options for biofilms

GSE - cysts. Although I haven't seen it mentioned as much lately.

the serrapeptase needs to be taken on an empty stomach --- otherwise it works as a digestive aid instead of a biofilm buster.
Posted 5/21/2017 9:34 AM (GMT -5)
It's quite possible that these doctors are trying to 'play it safe' - prescribing lower doses in order to not attract the attention of those that would jeopardize their practice. We are seeing more and more of this because of the political fight that is going on.
✚ New Topic ✚ Reply
12