LymeNet Flash: Encouraging News ..... Since Rifampin!

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»	LymeNet Flash » Questions and Discussion » General Support » Encouraging News ..... Since Rifampin!

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Topic: Encouraging News ..... Since Rifampin!

TN Kim
LymeNet Contributor
Member # 26729

posted

Hello! I haven't been to the forum in quite some time.

Once I got over a week's herx from Rifampin, I had a remarkable improvement!

I have been almost completely back to my normal self ever since! I just went back to Dr. K today

and he told me to stop Rifampin since I am doing so good and also I do think it made me a bit depressed.

I had just started my second 3-weeks pulse with it (Rifampin) this Sunday and have felt depressed ever since.

I am pretty sure that I felt depressed on it the last pulse as well but once the herx ended, I felt great!

I truly think the Rifampin was the "cure" drug for me. Dr. K. wants me to just pulse my Dorxy

and Ceftin for 3 weeks (no more Rifampin) and then the Tindamax for 3 weeks.

After that, I will go back to him .... well, actually in about 8 weeks.

Anyway, he says if I am still feeling as good as I have been, then he might be able to "release me"!

You know what that means??? It might just mean that I beat Lyme!!!

I am scared to get too excited but I'm sure hopeful!

The ONLY symptoms that I have still had for the past 4 weeks or so is a bit of twitching still but it is nothing like it was.

It is mostly in bed at night though I do get a few now and then while sitting at my desk.

He thinks that maybe that is Magnesium deficiency and told me to start taking a Magnesium supplement.

If that works for the twitching then I might be cured from Lyme!!?

--------------------
Bite 4/22/12
abx 5/03/12
neg. Lyme
pos. Cpn 5/17/12

Bite 5/22/10
abx 6/25/10

IgM � Igenex Positive & CDC/NYS Positive with 18+ ; 23-25+; 31+; 34+; 41+; 66+; 83-93 (IND)

IgG � Igenex Positive; CDC/NYS Negative with 31+; 39 (IND); 41++; 58+

Posts: 339 | From Tennessee | Registered: Jun 2010 | IP: Logged |

kimmie
LymeNet Contributor
Member # 25547

posted

Congrats Kim, you were smart to catch it so early!

Posts: 747 | From Utah | Registered: Apr 2010 | IP: Logged |

TS96
LymeNet Contributor
Member # 14048

posted

Yes Congrats. Keep a watchful eye tho. I loved Rifampin too it got me 90% Then went off and a year later I needing to go back on it. I hope it does the same thing again.

Stay well.

--------------------
Bart Henslea 1976
Fibro/CFS/arthritis 2004
Lyme diagnosed 2007
3 1/2 years treatment with oral combos, Cowden, IV roc. BW herbs. Off all abx in 12/10. Feeling good.

Posts: 647 | From NY | Registered: Dec 2007 | IP: Logged |

Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759

posted

Congrats!

Would you mind telling us how long after you started Rifampin until the herx hit (was it right away, a few days in, etc)?

And also, what symptoms did you get during the herx?

I think this would help some people to know if their Rifampin is "doing something" or not. Thanks!

And CONGRATSSSS!

Posts: 4590 | From Midwest | Registered: Jun 2008 | IP: Logged |

Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759

posted

Oh, sorry...one more question. Aside from what symptoms made up your herx, I'm also wondering what symptoms the Rifampin "cured"? (brain fog, fatigue, etc etc)

Posts: 4590 | From Midwest | Registered: Jun 2008 | IP: Logged |

TN Kim
LymeNet Contributor
Member # 26729

posted

I am more than happy to share what I know. I was on Rifampin for a full week before I felt anything!

After that first week, the herx hit me! I felt really bad for another full week! I had an increase

in all of my symptoms .... aches, pains, muscle twitches, speech problems, weakness, fatigue.

After the herx ended, I have felt back to my pre-Lyme self except for a bit of muscle twitching

still which is mostly in bed at night. I am having more twitching right now tonight though but

I did take 3 days of the Rifampin before Dr. K. told me to stop today because of the depression.

Maybe I am being too optimistic and maybe the twitching is still really Lyme or Bart and not just

a Magnesium deficiency. I'm starting to get more paranoid as the night goes on and I feel the

twitches again. [Frown]

So much for being hopeful for a few hours. Can anyone tell me what they think?

Could I be "cured" and the twitches just be Magnesium deficiency ... or am I still "sick"?

*sigh*
Kim

--------------------
Bite 4/22/12
abx 5/03/12
neg. Lyme
pos. Cpn 5/17/12

Bite 5/22/10
abx 6/25/10

IgM � Igenex Positive & CDC/NYS Positive with 18+ ; 23-25+; 31+; 34+; 41+; 66+; 83-93 (IND)

IgG � Igenex Positive; CDC/NYS Negative with 31+; 39 (IND); 41++; 58+

Posts: 339 | From Tennessee | Registered: Jun 2010 | IP: Logged |

seibertneurolyme
Frequent Contributor (5K+ posts)
Member # 6416

posted

Of course this goes against what your doc told you -- but in my opinion pulsing rifampin is not a good idea and you were not on it nearly long enough.

If you have bart symptoms will start coming back within 2 or 3 days or definitely within a week. And in hubby's case each time he had to stop it made it harder and harder to get back to baseline. I honestly think some strains of bart do develop med resistance. That is why I think you need to be on at least 2 supposed bart meds at any one time and keep rotating off of one and adding in a new one.

But I think the total treatment needs to be a minimum of 4 -6 months with no breaks.

This is not medical advice, just my personal opinion based on hubby;s experiences.

Bea Seibert

Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004 | IP: Logged |

TN Kim
LymeNet Contributor
Member # 26729

posted

Bea, I have felt great from the time I herxed with Rifampin up until now which has been 6 weeks.

My only remaining symptoms have been some mild muscle twitching. I was supposed to re-start Rifampin but stopped because it has caused

notable depression for me. I am already on life-long anti-depressants so I can't afford to take

a drug that causes depression. Also, I was taking Doryx and Ceftin along WITH the Rifampin!

Now, I will just take the Doryx and Ceftin only for 3 weeks then switch to 3 weeks of only Tindimax.

Same routine as I did last time, just no Rifampin this round.

--------------------
Bite 4/22/12
abx 5/03/12
neg. Lyme
pos. Cpn 5/17/12

Bite 5/22/10
abx 6/25/10

IgM � Igenex Positive & CDC/NYS Positive with 18+ ; 23-25+; 31+; 34+; 41+; 66+; 83-93 (IND)

IgG � Igenex Positive; CDC/NYS Negative with 31+; 39 (IND); 41++; 58+

Posts: 339 | From Tennessee | Registered: Jun 2010 | IP: Logged |

Lymetoo
Moderator
Member # 743

posted

Wow that would be wonderful if you could get off meds soon!!

CELEBRATE!! [hi]

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 96222 | From Texas | Registered: Feb 2001 | IP: Logged |

Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091

posted

I don't think that Doryx or Ceftin are particularly Bart meds, however. And I agree with Bea. Be careful about stopping treatmet too soon. sorry to be a "downer."

Posts: 3771 | From around | Registered: Mar 2008 | IP: Logged |

jkmom
LymeNet Contributor
Member # 14004

posted

Muscle twitching in my legs is my most predominant symptom. When I am on Biaxin or zith it is almost gone. It comes back quickly if I stop or switch to something else, so I think mine is probably a coinfection but not magnesium deficiency.

Also, if you are herxing on Rifampin still, with depression and/or muscle twitching, wouldn't that mean you still have something?

My symptoms are so mild that one of my LLMD's thought I should be done with abx. Instead, I found a new one who is treating me more aggressively. I do not want to have even mild symptoms, since I have seen what can happen if they progress.

Sorry to be another downer.

Posts: 984 | From US | Registered: Dec 2007 | IP: Logged |

TN Kim
LymeNet Contributor
Member # 26729

posted

Well, I guess that is my thought now too since I am having more muscle twitching again ... just after taking only 2.5 days of Rifampin.

Now I am wondering if I SHOULD start the Rifampin again and not stop it just because of the depression?

It helped me SO much as far as the energy level, pain and aching going away and just generally feeling well again!

Dang, I don't know WHAT to do now. LLMD says stop the Rifampin because of depression but honestly, the Doryx and Ceftin didn't make the

difference in symptom improvement that the Rifampin did and I REALLY don't want to test another new abx.

I am SO FRUSTRATED now!!!

--------------------
Bite 4/22/12
abx 5/03/12
neg. Lyme
pos. Cpn 5/17/12

Bite 5/22/10
abx 6/25/10

IgM � Igenex Positive & CDC/NYS Positive with 18+ ; 23-25+; 31+; 34+; 41+; 66+; 83-93 (IND)

IgG � Igenex Positive; CDC/NYS Negative with 31+; 39 (IND); 41++; 58+

Posts: 339 | From Tennessee | Registered: Jun 2010 | IP: Logged |

kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691

posted

Could you possibly get your doctor who prescribes your anti depressant to either up your dosage or add other drug the mix so that you could take the Rifampin and try to control your depression symptoms?

--------------------
symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections.

Posts: 1470 | From Tennessee | Registered: Dec 2009 | IP: Logged |

Tracy9
Frequent Contributor (1K+ posts)
Member # 7521

posted

I'd stay on the Rifampin and add an antidepressant.

Rifampin has been a miracle drug for me as well. I've been on it for six months. I'm thinking of asking my LLD about switching to IV form for maximum benefit. I've been sick for many years and I think I have plateaued on it.

--------------------
NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005 | IP: Logged |

lymeshmyme
LymeNet Contributor
Member # 26774

posted

WOOO HOOO! This is the best news! So happy for you.

Posts: 256 | From Texas | Registered: Jun 2010 | IP: Logged |

Tricky Tickey
Frequent Contributor (1K+ posts)
Member # 26546

posted

Hey Kim. I'm happy you are doing so well. It's obvious from your FB page!! Way to go, girl! I know exactly how you feel. Wondering if the lingering symptoms mean you still have it or is it just a result of the illness. I'm going through the same confusion.

Keep moving, ride that horse of yours! Don't allow the worry to obsessivly overtake your recovery. Accept it, feel it, receive it. One step at a time....you will make it!

--------------------
Early Disseminated LD- 2010.
Currently doing acupuncture and yoga.
Negative Igenex (IND & Pos Bands)
ISSUES AFTER: Tendonitis, letter reversal, Low immune system.
PREVENTION:SaltC,Iodine,Humaworm,
Chiropractic.

Posts: 1013 | From In a van down by the river. | Registered: Jun 2010 | IP: Logged |

TN Kim
LymeNet Contributor
Member # 26729

posted

Well, I gave in and stayed ON the Rifampin. I am terribly depressed again and now here come the

body aches as well. So ... can we all say "HERXING again" together? [Frown]

So, I guess that means that I am NOT "cured" and that I am still sick with this illness.

I SOOO enjoyed the past 4 weeks of feeling normal again and now back to feeling like an

afflicted Lyme and Co. sufferer. Reality stinks!!!

I guess now is the question ... is this a herx for sure ... meaning that I am still sick or is

it MAYBE just a "sife effect" of the meds? I know ... wishful thinking here but it doesn't

hurt to ask does it?

--------------------
Bite 4/22/12
abx 5/03/12
neg. Lyme
pos. Cpn 5/17/12

Bite 5/22/10
abx 6/25/10

IgM � Igenex Positive & CDC/NYS Positive with 18+ ; 23-25+; 31+; 34+; 41+; 66+; 83-93 (IND)

IgG � Igenex Positive; CDC/NYS Negative with 31+; 39 (IND); 41++; 58+

Posts: 339 | From Tennessee | Registered: Jun 2010 | IP: Logged |

Misfit
LymeNet Contributor
Member # 26270

posted

I was about to jump up and down for you (figuratively, of course) over your happy news. Then I read the last post.

I don't have any answers for your symptoms, but whatever it is I hope that it's remedied.

At the least you got a glimpse of what life will be like when you ARE cured of Lyme! Then we'll jump up and down.... [Smile]

Posts: 624 | From Oklahoma | Registered: Jun 2010 | IP: Logged |

TN Kim
LymeNet Contributor
Member # 26729

posted

Thank you, Misfit. I am more confused than ever now!

Now I am getting comments that it is dangerous to PULSE Rifampin. That my "flu-like" aches and

symptoms could actually be a dangerous side effect of stopping and starting Rifampin. *sigh*

How do I or anyone else KNOW for sure??? [Embarrassed]

(

[ 10-08-2010, 10:38 PM: Message edited by: TN Kim ]

--------------------
Bite 4/22/12
abx 5/03/12
neg. Lyme
pos. Cpn 5/17/12

Bite 5/22/10
abx 6/25/10

IgM � Igenex Positive & CDC/NYS Positive with 18+ ; 23-25+; 31+; 34+; 41+; 66+; 83-93 (IND)

IgG � Igenex Positive; CDC/NYS Negative with 31+; 39 (IND); 41++; 58+

Posts: 339 | From Tennessee | Registered: Jun 2010 | IP: Logged |

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