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SeanIRL
Regular Member


Date Joined May 2016
Total Posts : 69
   Posted 3/5/2018 1:22 PM (GMT -6)   
I've been on treatment for lyme for the past 9 months, my IDS is continuing my AB treatment for another 3 months (bringing it to a full year of antibiotics) but if I don't see any improvement by then - he has decided to take me off them and prescribe LDN for 6 months to see how I fair.

I've been on the following for the past 9 months:

  • lymecycline (switched out after 6 months)
  • rifampicin
  • azithromycin
  • cefuroxime (added after 3 months)
  • malarone (added after 6 months)


My latest appointment last week, he decided to switch the cefuroxime for amoxicillin to try switch things up.


I also took and am continuing to take the following herbs/remedies:

  • nattokinase
  • japanese knotweed
  • cat's claw
  • artiseminin
  • teasel root tincture
  • sarsaparilla
  • whole leaf stevia extract


I've also ordered some serrapeptase and d-limonene. So I have really been doing everything on my side also to get better.

My problem is I've seen no improvement. But also, I've had zero reactions to the antibiotics. No herx, nothing. And they were pretty high doses too - like 2x to 4x the normal dose size. Honestly - I'd get more of a reaction to caffeine than my abx.

My IDS seems to know what he is doing and is the most knowledgeable specialist in my country, but he said that I should be at least seeing something happen by now. But it's as if I'm not taking anything. The only time I feel anything is on the days I take azithromycin when my stomach feels a bit queasy. Outside of that, I get about my day as normal.

I've had CFS for 13 years. I don't remember ever being bit by a tick, but armin labs results showed I was positive for lyme and Ehrlichia/Anaplasma (but negative for bartonella). I don't have headaches or joint pain - never had. If it wasn't for the twitching (which to be fair has subsided a bit) - I'd think I didn't have lyme at all.

I'm not really sure what to do from here. My IDS is a really good guy, and I trust his ability. But after the next 3 months - it will be a year of treatment, with no changes and then my treatment will be over.

Do I just brush the idea of lyme to the side? Surely I should have had some sort of response (either positive or negative) by now?

LymeSick 🌟
Regular Member


Date Joined Aug 2017
Total Posts : 234
   Posted 3/5/2018 1:40 PM (GMT -6)   
What dosages are you taking?

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33895
   Posted 3/5/2018 1:44 PM (GMT -6)   
Why wait for the LDN? It's harmless.

So treating babesia (malarone) for only 3 months? May not be long enough yet.

Also, maybe stop the Rifampin for awhile and take Mepron...it has more of a 'kick' to it. I've been on both.
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

SeanIRL
Regular Member


Date Joined May 2016
Total Posts : 69
   Posted 3/5/2018 2:27 PM (GMT -6)   
LymeSick 🌟 said...
What dosages are you taking?


1000mg of cefuroxime twice a day.
300mg of rifampicin once a day.
I can't remember my lymecycline dose, but I think it was twice a day and like twice the normal dose for lyme IIRC.
Azithromycin is 500mg monday, wednesday and fridays.
Amoxicillin 1000mg (3 times a day I think? It's hard to read his writing. I haven't started it yet)
Malarone is 500mg once a day.

SeanIRL
Regular Member


Date Joined May 2016
Total Posts : 69
   Posted 3/5/2018 2:33 PM (GMT -6)   
Girlie said...
Why wait for the LDN? It's harmless.

So treating babesia (malarone) for only 3 months? May not be long enough yet.

Also, maybe stop the Rifampin for awhile and take Mepron...it has more of a 'kick' to it. I've been on both.


Mepron is Atovaquone. Malarone is a combination of Atovaquone/proguanil which I've already been on with no response.

I never tested positive for Babesia btw, but I think miscommunication when I said I sweat a lot - he thought I meant night sweats. I never had night sweats or typical babesia symptoms. The only co-infections that I tested positive for was ehrlichia/anaplasma and c.pneumoniae.

He gave me a prescription for LDN a few months ago, but I was hesitant to start it because I wanted to see how I responded to the antibiotics and didn't want anything else to cloud my improvement. He has given me a 6 month LDN prescription which I'll try next.

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 2025
   Posted 3/5/2018 3:30 PM (GMT -6)   
That is odd that you have no response or reaction, and it is good that you are questioning things.

I take it you've had no response (improvement or increase in symptoms) from the herbs either.

What symptoms did you have that initially led you to the doctor to be tested and treated for Lyme?

Were the tests you had IGG and IGM antibody tests?

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33895
   Posted 3/5/2018 3:48 PM (GMT -6)   
SeanIRL said...
Girlie said...
Why wait for the LDN? It's harmless.

So treating babesia (malarone) for only 3 months? May not be long enough yet.

Also, maybe stop the Rifampin for awhile and take Mepron...it has more of a 'kick' to it. I've been on both.


Mepron is Atovaquone. Malarone is a combination of Atovaquone/proguanil which I've already been on with no response.

I never tested positive for Babesia btw, but I think miscommunication when I said I sweat a lot - he thought I meant night sweats. I never had night sweats or typical babesia symptoms. The only co-infections that I tested positive for was ehrlichia/anaplasma and c.pneumoniae.

He gave me a prescription for LDN a few months ago, but I was hesitant to start it because I wanted to see how I responded to the antibiotics and didn't want anything else to cloud my improvement. He has given me a 6 month LDN prescription which I'll try next.


Yes I know malarone has Atovaquone in it but a lower dose.
I’ve taken both and no comparison really - the Mepron (on its own) was stronger- in fact DrJ will give some patients malarone if they can’t handle Mepron (alone)

Babesia sweats can be day sweats too.
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

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33895
   Posted 3/5/2018 3:49 PM (GMT -6)   
I’ve not tested positive for Babs either.
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

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33895
   Posted 3/5/2018 3:51 PM (GMT -6)   
Have you seen Suzy Cohen’s list of Babs symptoms?

Maybe take a look - scroll down to the green box


/suzycohen.com/articles/lyme_babesia_treatment/
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

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33895
   Posted 3/5/2018 3:55 PM (GMT -6)   
It is odd though that you haven’t had any response with those abx.
They’re certainly high enough doses
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

magoo2
Veteran Member


Date Joined Mar 2015
Total Posts : 1302
   Posted 3/5/2018 6:53 PM (GMT -6)   
Have you ever been checked by a biological dds? If not don't wait another year-a good biological dds may be the key to regaining your health. Treating parasites also sounds like something you may consider looking into.

goshawk
Forum Moderator


Date Joined Sep 2016
Total Posts : 2299
   Posted 3/5/2018 8:20 PM (GMT -6)   
Curious, you mentioned twitching.....but you say negative for Bartonella....testing can be unreliable

My twitching is from Bartonella

Might try a few herbals for Bart and see what happens

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33895
   Posted 3/5/2018 9:06 PM (GMT -6)   
goshawk said...
Curious, you mentioned twitching.....but you say negative for Bartonella....testing can be unreliable

My twitching is from Bartonella

Might try a few herbals for Bart and see what happens


He is taking antibiotics (Rifampin) for bart now though.

I guess it wouldn't hurt if he added in a couple of herbs - maybe the JK and Houttuynia.

Oh - I just saw your dosage of Rifampin, Sean...300 once daily of Rifampin is half the dose.
...or are you taking Rifabutin?
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

bluelyme
Veteran Member


Date Joined Nov 2015
Total Posts : 4904
   Posted 3/6/2018 2:21 AM (GMT -6)   
bee venem therapy with rife n herbs worked for me,,,

SeanIRL
Regular Member


Date Joined May 2016
Total Posts : 69
   Posted 3/6/2018 12:40 PM (GMT -6)   
WalkingbyFaith said...
That is odd that you have no response or reaction, and it is good that you are questioning things.

I take it you've had no response (improvement or increase in symptoms) from the herbs either.

What symptoms did you have that initially led you to the doctor to be tested and treated for Lyme?

Were the tests you had IGG and IGM antibody tests?


I've had CFS since 2005, which was triggered after some dental work. (A mouthful of fillings, which I had safely removed a few years ago and chelated for 3 years to make sure).

Then a few years back I was bit by my cousin's dog, and that night I noticed my leg was twitching which gradually over time migrated to random parts of my body. At one point it was really bad, but honestly right now - it's nowhere near as bad as it was and is really triggered mostly by dairy.

The twitching was the thing that made me think it might be lyme, even though all the literature I read said that lyme wasn't transmittable by a dog bite. All my other symptoms I've had for years as I have ME/CFS, but the twitching was new. I mean, I had some eyelid twitching prior to it - but never anywhere else in my body.

In anycase, I tested with armin labs (which was required before my current IDS would see me) which gave me a positive result for lyme. I did all positive lyme tests that they had to offer.

Armin Labs said...
Borrelia burgdorferi Elispot
Borrelia burgdorferi Full Antigen + 7 SI
Borrelia b. OSP-Mix (OSPA/OSPC/DbpA) + 10 SI
Borrelia burgdorferi LFA-1 (+) 2 SI
>3 = positive
2-3 = weak positive
<2 = negative


The LFA-1 was only a weak positive, but the other 2 were positive. I've seen a lot higher results from people on this forum using armin-labs, but I can only go with what they give me.

And yes - no improvement in symptoms. No response, either good or bad.

SeanIRL
Regular Member


Date Joined May 2016
Total Posts : 69
   Posted 3/6/2018 12:43 PM (GMT -6)   
goshawk said...
Curious, you mentioned twitching.....but you say negative for Bartonella....testing can be unreliable

My twitching is from Bartonella

Might try a few herbals for Bart and see what happens


Honestly, Bartonella is what I thought I might have rather than Lyme. But I did all possible tests available for it with Arminlabs and they all came back negative.

Arminlabs said...
Bartonella antibodies
Bartonella-quintana-IgG-IFT < 1:64 Titer < 1:64
Bartonella-quintana-IgM-IFT < 1:20 Titer < 1:20
Bartonella-henselae-IgG-IFT < 1:64 Titer < 1:64
Bartonella-henselae-IgM-IFT < 1:20 Titer < 1:20

Serological no evidence for an infection with Bartonella henselae or Bartonella quintana.

Bartonella DNS
Bartonella henselae/quintana-DNS (PCR) negative negative

No actual evidence for specific Bartonella henselae/quintana-DNS in the blood.

SeanIRL
Regular Member


Date Joined May 2016
Total Posts : 69
   Posted 3/6/2018 12:45 PM (GMT -6)   
Girlie said...
goshawk said...
Curious, you mentioned twitching.....but you say negative for Bartonella....testing can be unreliable

My twitching is from Bartonella

Might try a few herbals for Bart and see what happens


He is taking antibiotics (Rifampin) for bart now though.

I guess it wouldn't hurt if he added in a couple of herbs - maybe the JK and Houttuynia.

Oh - I just saw your dosage of Rifampin, Sean...300 once daily of Rifampin is half the dose.
...or are you taking Rifabutin?


The brand name is Rifadin. Rifampicin 300mg. That's the dose I've been on for the past 9 months.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33895
   Posted 3/6/2018 1:27 PM (GMT -6)   
SeanIRL said...
Girlie said...
goshawk said...
Curious, you mentioned twitching.....but you say negative for Bartonella....testing can be unreliable

My twitching is from Bartonella

Might try a few herbals for Bart and see what happens


He is taking antibiotics (Rifampin) for bart now though.

I guess it wouldn't hurt if he added in a couple of herbs - maybe the JK and Houttuynia.

Oh - I just saw your dosage of Rifampin, Sean...300 once daily of Rifampin is half the dose.
...or are you taking Rifabutin?


The brand name is Rifadin. Rifampicin 300mg. That's the dose I've been on for the past 9 months.


Yes, but it's half the dose that's required to treat bartonella.

In fact some LLMD's go further than 600 mg per day.
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

k07
Veteran Member


Date Joined Sep 2015
Total Posts : 2548
   Posted 3/6/2018 2:12 PM (GMT -6)   
Twitching can be from low magnesium or b12. Have you been supplementing?

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 2025
   Posted 3/6/2018 2:55 PM (GMT -6)   
Well, this is definitely mysterious!!

I've had ME/CFS since 2005, which was triggered after some dental work. (A mouthful of fillings, which I had safely removed a few years ago and chelated for 3 years to make sure).

So you did not have CFS until you had mercury amalgams removed.

Were you having other problems that led you to have amalgams removed in the first place?

You chelated for 3 years. What did use for chelation? How did you feel when doing chelation? How did you feel after you stopped chelation?

Then a few years back I was bit by my cousin's dog, and that night I noticed my leg was twitching which gradually over time migrated to random parts of my body. At one point it was really bad, but honestly right now - it's nowhere near as bad as it was and is really triggered mostly by dairy.

The twitching started with the dog bite. Was the bite a puncture wound? Twitching is a neurological symptom. It could be caused by any number of things not just Lyme or bartonella. Theoretically, the dog bite could have caused damage to a nerve. However, you said the twitching later migrated to various areas of the body and you did have some eyelid twitching prior to the dog bite. Now you believe the twitching is mostly triggered by dairy. Not sure what to think of the dairy connection.

The twitching was there before the dog bite but was mild. After the dog bite it was noticeable and you became much more aware of it.

With longterm Lyme and coinfections, symptoms can start out mild and be easily dismissed. Later, they can occur more frequently or change and evolve along with new symptoms.

Definitely positive for Lyme via tests. It is possible your immune system has largely kept the Lyme in check. Bartonella tests are harder to get a positive on from my understanding, and there are numerous other species besides the 2 they test for that can infect humans.

Still, none of this explains why you have had NO reactions positive or negative to multiple antibiotics and herbs.

There are people who were exposed to Lyme in the past and either were treated or their immune systems took care of it and yet they are unable to clear the toxins from their bodies. The toxins remain and trigger ongoing chronic inflammation that Dr. Shoemaker termed Chronic Inflammatory Response Syndrome (CIRS). That is one possibilty here. You can read about Shoemaker's work at www.survivingmold.com. There are many people with ME/CFS who are sick due to biotoxins and a genetically induced inability to clear toxins. Many of them are on the Phoenix Rising Forum. Many of them were sickened due to mold exposure and other organisms that produce biotoxins.

SeanIRL
Regular Member


Date Joined May 2016
Total Posts : 69
   Posted 3/7/2018 2:17 PM (GMT -6)   
k07 said...
Twitching can be from low magnesium or b12. Have you been supplementing?


My magnesium and B12 levels are fine. I already tried supplementing with magnesium malate, epsom salt baths and an array of forms of B12.

SeanIRL
Regular Member


Date Joined May 2016
Total Posts : 69
   Posted 3/7/2018 2:26 PM (GMT -6)   
WalkingbyFaith said...
Well, this is definitely mysterious!!

I've had ME/CFS since 2005, which was triggered after some dental work. (A mouthful of fillings, which I had safely removed a few years ago and chelated for 3 years to make sure).

So you did not have CFS until you had mercury amalgams removed.

Were you having other problems that led you to have amalgams removed in the first place?

You chelated for 3 years. What did use for chelation? How did you feel when doing chelation? How did you feel after you stopped chelation?


No, I developed CFS after getting amalgams. Have read lots of anecdotes of people developing health issues from amalgam fillings from mercury toxicity. After a few years I had my fillings replaced safely and began chelation a few months later.

I chelated with the cutler protocol (ALA & DMSA every 3 hours, 3 days a week). I did this for 3 years without improvement.

WalkingbyFaith said...

Then a few years back I was bit by my cousin's dog, and that night I noticed my leg was twitching which gradually over time migrated to random parts of my body. At one point it was really bad, but honestly right now - it's nowhere near as bad as it was and is really triggered mostly by dairy.

The twitching started with the dog bite. Was the bite a puncture wound? Twitching is a neurological symptom. It could be caused by any number of things not just Lyme or bartonella. Theoretically, the dog bite could have caused damage to a nerve. However, you said the twitching later migrated to various areas of the body and you did have some eyelid twitching prior to the dog bite. Now you believe the twitching is mostly triggered by dairy. Not sure what to think of the dairy connection.

The twitching was there before the dog bite but was mild. After the dog bite it was noticeable and you became much more aware of it.



I had eyelid twitching every now and again, but not anywhere else in my body. The body twitches seemed different. They were pretty bad but the past year or so, they have subsided a bit. If I ingest a lot dairy they get worse, and I think stress also plays a role in their frequency.

WalkingbyFaith said...

Still, none of this explains why you have had NO reactions positive or negative to multiple antibiotics and herbs.


Honestly, I'd have more of a reaction from a cup of tea than these antibiotics. I was expecting me to react poorly to at least one of them because I was taking so many, but I've felt just fine on them.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33895
   Posted 3/7/2018 2:28 PM (GMT -6)   
Try doubling your Rifampin dose...it's not high enough to treat bartonella effectively.


also, did you know that taking Rifampin with malarone could reduce the effectiveness of the atovaquone in the malarone? It's already a lower dose compared to Mepron.

Another suggestion is to try Mepron instead of malarone and maybe discuss with your dr. removing the Rifampin for awhile while you take Mepron...so that you can give it a good 'shot' without the potency being reduced.
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

Post Edited (Girlie) : 3/7/2018 12:33:02 PM (GMT-7)


SeanIRL
Regular Member


Date Joined May 2016
Total Posts : 69
   Posted 3/7/2018 6:57 PM (GMT -6)   
Girlie said...
Try doubling your Rifampin dose...it's not high enough to treat bartonella effectively.


also, did you know that taking Rifampin with malarone could reduce the effectiveness of the atovaquone in the malarone? It's already a lower dose compared to Mepron.

Another suggestion is to try Mepron instead of malarone and maybe discuss with your dr. removing the Rifampin for awhile while you take Mepron...so that you can give it a good 'shot' without the potency being reduced.


I can't because he has given me my final 3 month's of prescription and if there's no changes after that then he's taking me off the abx sad

SeanIRL
Regular Member


Date Joined May 2016
Total Posts : 69
   Posted 3/7/2018 7:19 PM (GMT -6)   
I've e-mailed him and asked him if he would double my rifampin dose, and also add doxycycline on top of the amoxicillin. If I'm going to be finished with my abx in 3 months, I'd like to just throw everything at it.

I've also ordered some ivermectin, which I've seen people report it curing twitching. It's worth a shot.
Lyme diagnosis summer 2017:
Medication: malarone, rifampin, azithromycin, cefuroxime, lymecycline (cycled out after 6 months)
Herbs: nattokinase, artemisimin, cat's claw, whole leaf stevia extract, teasel root extract, sarsaparilla, japanese knotweed.
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