posted
I'm starting Lyme treatment for the first time next week. My doctor has prescribed the following:
Week 1 M,W,& F Minocycline Cefdinir Azithromycin
Week 2 Same as week 1 except add Flagyl 2x day on Thursday and Friday
Week 3 No medication
Week 4 Take another week off meds or begin week 1 again depending on how I'm feeling
I guess I'm really nervous to take so many medications at once. I'm nervous about side effects as well as any long term damage. Has anyone else taken this combination of medicine before?
**edited the dosages, per Lymenet rules. Feel free to share in a private message here**
posted
Don't be nervous. Treating Lyme is pretty much a continuous cycling of 3-4 antibiotics at a time. It seems like a lot if youre new but youll get used to it.
Posts: 173 | From USA | Registered: Aug 2015
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I had the same reaction over the amount of medicine. I've been on a 3 antibiotic cocktail for almost a year now.
GOOD probiotics is a must.
Everyone does their routine, dosing, etc. a bit different. I always started with one drug at a time so I would know what it was doing to me. It would have been very hard for me to start 3 drugs at once.
I usually had to gradually get to the correct dose as well. I'm kind of a baby when it comes to herxes. I have taken antibiotics continuously, though. Not pulsed.
Try not to be nervous. It took me about 4 months of treatment before I could honestly say I was progressing.
It's a marathon, not a sprint... but it will get better.
Good luck and keep us posted.
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
I would be as afraid as you!
I can barely stand ONE antibiotic for more than 2 days.
I had to drop all drugs long ago.
Fortunately, there are many other options of treatment, that also work.
In case you feel your body cannot take these stuff, no worry.
Many people treat using herbs and other treatments.
My daughter and I got healed without drugs, and we've been practically 10 years almost totally drug free.
It's a very personal decision, and also it depends on the body: some people can take all those stuff, others can't or do not want to.
Posts: 6199 | From Brussels | Registered: Oct 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey there Christmas1987,
You will get many different opinions here. What is most important though is for you to do what you are comfortable with, and nothing more.
Don't let anyone (including a doctor) goad or guilt you into doing something you don't want to do.
You DO have the right to say HOLD EVERYTHING, or NO NO NO. And you should use your best judgement when making your decisions, and do what feels "right" for you,
For example, if I were to take that combo I'd be on the floor or in the hospital the very first day, if I weren't dead.
Everyone is different and you should do only what you feel safe doing. For me and many others that combo can be dangerous.
And there is absolutely NO reason it can't be adjusted.
And the problem with starting all those meds at one time, especially in the beginning, is that if you have an allergic reaction you can't tell which of the meds caused it and you'd have to refrain from all of them.
Yea, that sucks.
It also limits your future choices. We have some tools in our tool box, but not an abundance, so you might remember that you may need some of them later.
I can't tell you what to do, but knowing what I know now, if those were my orders I'd contact the docs office and tell them I am not comfortable doing all that at once.
They should be willing to adjust it so you aren't starting out with such a load. If not, find a different doctor, someone who will work WITH you.
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
It is common for a lyme doctor to start a patient out on 3 antibiotics. However, I think the best ones tell you to take one for a few days, then add in the second, then add in the third.
This way, if you get a bad reaction (like hives, red rash, vomiting, etc.), you will know which med caused it.
Then, after perhaps a few months when the patient is doing well on the 3 basic antibiotics, then the doctor adds in flagyl to kill the cyst or persister form of lyme.
Usually, the goal is to work up to taking flagyl for 14 days in a row or continuously.
Your concern about "long term damage" of antibiotics is perhaps being caused by the medical profession who scare people that taking antibiotics long-term is bad.
Meanwhile, they will give teenagers antibiotics for acne for year after year. Also, TB is treated with long-term antibiotics as is rheumatic fever.
I got rheumatic fever in 2nd grade. I took antibiotics for a few years and then tapered off them. When the symptoms returned, I was back on antibiotics. This went on until 9th grade.
So, I think the medical profession's fear-producing words are definitely NOT for all diseases since they are treating people long-term themselves depending on the illness.
If you are concerned about your gut health, that is good. You should take a good probiotics 2 hours after taking the antibiotics. This will help restore your gut flora.
You really should read and STUDY the Burrascano Lyme Treatment Guidelines found here:
Burrascano was the lyme disease pioneer and the most successful lyme doc on the planet. They came from every country in the world to be treated by him.
As you will see, his protocol is a high-dose, combinations of antibiotics protocol. He has you take the meds daily, no stopping and starting.
I got rid of lyme disease (and babesiosis and bartonella) over 12 years ago now by going to a doctor who treated me this way.
The top lyme doctors give out combinations of antibiotics. As you will see in Burrascano, lyme has the ability to evade any one antibiotic. That is why you will make no progress if you just take one at a time. Read "Combination Therapy" starting on page 12.
The more you study this document, the more likely you will become comfortable with how lyme must be treated.
Read "Safety" starting on page 22. And see this quote:
"Remember, years of experience with chronic antibiotic therapy in other conditions, including rheumatic fever, acne, gingivitis, recurrent otitis, recurrent cystitis, COPD, bronchiectasis, and others have not revealed any consistent dire consequences as a result of such medication use. Indeed, the very real consequences of untreated, chronic persistent infection by B. burgdorferi can be far worse than the potential consequences of this treatment." (p. 22)
I have heard of doctors who have the patient takes breaks from meds like you are describing, but I think it is best to take the meds continuously like the Burrascano protocol recommends.
Still, some patients cannot handle high doses of antibiotics. With such patients, the doctor can increase doses slowly and add additional meds slowly. Every person is different.
If you can handle this therapy, then you may want to consider asking if you could take your meds every day until you become symptom free.
If your doc insists on the starting and stopping, then you may need to find another doctor to treat your lyme daily.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Actually TF, we disagree- sorry.
You said... "As you will see, his protocol is a high-dose, combinations of antibiotics protocol. He has you take the meds daily, no stopping and starting."
First, those guidelines are old. OLD old in terms of medical guidelines. Much has been learned since then that is not included in the GUIDE, key word GUIDE, lines.
NOTHING about the guidelines is mandatory and they must be adjusted to fit the individual patient's needs.
And Dr. B does say to stop treatment and adjust it as needed. He also promotes "pulse therapy" which is starting and stopping meds, different ones at different times.
QUOTE- (Herx) "Observation suggest that the more severe this reaction, the higher the germ load, and the more ill the patient.
In those with long-standing highly symptomatic disease who are on I.V. therapy, the week-four flare can be very severe, similar to a serum sickness reaction, and be associated with transient leucopenia and/or elevations in liver enzymes.
If this happens, decrease the dose temporarily, or interrupt treatment for several days, then resume with a lower dose."
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TF said... "Your concern about "long term damage" of antibiotics is perhaps being caused by the medical profession who scare people that taking antibiotics long-term is bad."
There have been no studies showing the affects of taking antibiotics long term for Lyme. There have been no studies showing combining antibiotics is safe or effective.
And there have been MANY problems with side effects and herx reactions, including death.
So it isn't just a false scare, it is real. What we do is dangerous and not scientifically supported. It is at best, pot-luck medicine. But, at least we are trying.
Any doctor treating anyone should and is responsible for stopping or adjusting doses/duration of antibiotics for many reasons, as, for example, elevated liver enzymes.
Dr. B QUOTE- COMBINATION THERAPY "Treatment of chronic Lyme usually requires combinations of antibiotics."
USUALLY, not always. It is not mandatory.
QUOTE_ Dr. B- "The choice of medication used and the dosage prescribed will vary for different people based on multiple factors. These include duration and severity of illness, presence of co-infections, immune deficiencies, prior significant immunosuppressant use while infected, age, weight, gastrointestinal function, blood levels achieved, and patient tolerance."
QUOTE- Dr. B- "Therefore, begin with a regimen appropriate to the setting, and if necessary, modify it over time based upon antibiotic blood level measurements and clinical response."
QUOTE- Dr. B- "Biliary and superinfection problems with ceftriaxone can be lessened if this drug is given in interrupted courses (known commonly as “pulse therapy”- refer to chapter on this on page 20), so the current recommendation is to administer it four days in a row each week."
QUOTE- Dr. B- "Therefore, the trend now is to treat the chronically infected patient who has resistant disease by combining metronidazole with one or two other antibiotics to target all forms of Bb. Because there is laboratory evidence that tetracyclines may inhibit the effect of Flagyl, this class of medication should not be used in these two- and three-drug regimens."
QUOTE- Dr. B- "It [antibiotic] is usually administered three or four times weekly for six to twelve months."
QUOTE- "Drug levels are measured, where possible, to confirm adequate dosing. Often, the regimen may have to be modified to optimize the dose."
Hope that helps you Christmas1987. Please do what YOU feel is best for YOU.
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Christmas, Dr. Burrascano recommends pulsing intravenous (IV) antibiotics or more toxic medications like vancomycin.
Since you are not on IV antibiotics or vanco, I did not mention this to you.
See "Pulse Therapy" on page 21. He has you take the IV antibiotics 2 to 4 days in a row each week.
So, as you can see, he never recommends being off antibiotics for 1 or 2 weeks as your doctor is doing.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
TF- I believe this is the doctor you promote here? He doesn't follow Dr. B's guidelines to a "T" either.
He makes all sorts of adjustments to Dr. B's recommendations.
It all depends on the patient's needs and the doctors own experience and beliefs as to what they prescribe, doses and how they do it.
posted
I (and my doctor who I was lucky to find) am definitely on the side of Burrascano's Guide and not Tincup here. Burrascanos is not that old, that information is not invalid, and I have always found the combinations in that guide are VERY VERY effeftive.
I can understand there are different opinions here, Tincups being extreme on the other side, and me probably on thr other extreme side but I will repeat what I always say as my experiences. You need high doses, and you need combos that you switch and yes you need them in the high dosages indicated in Burrascano.
And no you are not going to die from a herx. This is something I have heard Tincup bandy about as a thing for far too long. It is an exceptionally rare thing caused likely by another factor.
The bottom line is this, if you are not allergic to an antibiotic, and you would know that really soon, then no its not going to kill you. Will you herx? Absolutely. Does a herx feel like youre dying especially early on? Absolutely. But all that is is a sign that its working. If you keep stopping while doing your antibiotics every time you herx or have symptoms, you willl never get better. I learned this deeply over the years.
I usually wouldnt respond so vociferously but I really believe Tincups advice in this case is bad. And the fact that Burrascanos guide, which has been the single best guide on antiobiotic combos, is deprecated in his/ her response is something I can not sit on the sidelines for
Posts: 173 | From USA | Registered: Aug 2015
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I appreciate anyone asking me questions and sharing their opinions, but I do not like what you are doing. It is not acceptable.
And it didn't have to be done that way. How rude and disrespectful.
You said.. "I (and my doctor who I was lucky to find) am definitely on the side of Burrascano's Guide and not Tincup here."
You are assuming (stating) I am not on the side of Dr. B?
Big time wrong, so wrong you can’t even imagine. I’ve known Dr. B, assisted him and fought for him for over three decades.
I’ve also sent thousands of patients to him and still today chat back and forth with him on Lyme related issues.
Please don't mistake my commenting that the guidelines he wrote almost a decade ago are "old" for a lack of respect and my appreciation for him.
Proof that he is a hero and important to me?
Check the www.MarylandLyme.org website. If I was not on his side he certainly wouldn’t be referenced or promoted at least 47 different times on just that one site.
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You said… "Burrascanos is not that old, that information is not invalid, and I have always found the combinations in that guide are VERY VERY effeftive.”
First of all I didn't say his information was invalid.
And the fact is, the guidelines he wrote almost 10 years ago are OLD. Compared maybe to the ice man, no. But, in terms of medical knowledge, they are old.
There has been well over 4,000 NEW studies putting new information out there since his guidelines were published.
4,000!
And I am not the one "dating" the guidelines or setting the standard. The National Guideline Clearing House has a policy to remove medical guidelines that are over five years old. His Diagnostics Hints paper is almost 2 times the NGCH maximum limit.
The federal 5 year policy is to protect patients and doctors both from using outdated information (injury, lawsuits).
If you’ll remember ILADS guidelines were pulled after their time was up because they were considered outdated.
And I would sincerely hope you wouldn’t promote using 10 year old cancer or TB or MERSA guidelines to treat yourself or your family member considering all the new science that has been published since they would have been published, so why is old not old with Lyme patients?
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You said… "I can understand there are different opinions here, Tincups being extreme on the other side, and me probably on thr other extreme side but I will repeat what I always say as my experiences.”
My opinions above are from, and based on facts. Science. Also they rest on clinical experiences involving hundreds of thousands of people, and not just your own personal experience which may be one-sided.
As for my “extreme” position? I have seen about 1/4 of Lyme patients have dangerous JH reactions over the years that have caused severe illness, hospitalizations, organ and tissue damage, loss of vision and even death.
If being on the side of safety is wrong when a new patients is concerned about a possible problem, so be it. I will not sugar coat the possibilities when asked and certainly no one should try to bury them.
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You said… "You need high doses, and you need combos that you switch and yes you need them in the high dosages indicated in Burrascano.”
That’s not always true. Many LLMD’s do not use those exact doses; even TF’s own doctor doesn’t come close, which I pointed out above using his own words- NOT mine.
Now, if you know Christmas's age, weight, height, BP, medical history, family history, current and past lab readings, etc. etc., have performed a physical exam, and had the results for the many other things his/her doctor has checked for, AND you had a medical license AND were Christmas’s doctor, THEN you could direct treatment for him/her.
Until that time we can only tell people our own experiences and NOT say conclusively to someone that “you NEED high doses”, or "you NEED combo’s that you switch”, or “you NEED them in the high dosages indicated by Burrascano" blah blah blah.
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You said.. "And no you are not going to die from a herx. This is something I have heard Tincup bandy about as a thing for far too long."
Bandy about? Why not just ask me why I have that position instead of slamming me for it?
And I didn’t know you owned a crystal ball. You really feel you can sit there comfortably and say someone won’t die from a herx, when even doctors don’t have that answer?
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You said.... "It is an exceptionally rare thing caused likely by another factor.”
I'd love to see your scientific support for that comment. Oh, that's right, there isn't any.
There are studies coming out by LLMD's that have used my statistics gathered over the years on deaths in Lyme patients.
And I’ve mourned terribly and stood at the grave of too many who have died from treatment or neglect. I’ve gathered obits, talked to family members, discussed this with LLMD’s, written memorial tributes, and have a pretty solid back ground in this area.
I can’t release the data until the study is published (asked by LLMD not to), however, I can tell you our community has a high rate of deaths compared to many other diseases.
And I can say that herxing was a factor in many of them, and hopelessness was also a big factor.
I wanted to cry this morning when I saw your reply and how disrespectful it was to those we’ve lost. You may not, but I do and will continue to remember them.
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You said… "The bottom line is this, if you are not allergic to an antibiotic, and you would know that really soon, then no its not going to kill you.”
I will assume you have not read any of the science or realized that even doctors (including LLMD’s) have a hard time distinguishing between an allergic reaction and herx.
You also may not know an allergic reaction can occur weeks after a medication has been stopped and it can occur months into taking it. For example, with Zithromax.
After stopping for 2 weeks an allergic reaction popped up. We’ve had that happen to patients here. So no, you can't always tell.
So please do not assume a new patient or anyone else has the ability to instantly or easily tell a herx from an allergic reaction. And keep in mind, both have the chance of being deadly.
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You said… "Will you herx? Absolutely.”
Actually, many people do not herx at all. Check the scientific literature. Off the top of my head, it ranges from no herxes in a group of patients to over 50% of patients (can’t remember the high number right now.)
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You said… "Does a herx feel like youre dying especially early on? Absolutely."
Well, not always. Please check the scientific literature or with the LLMD’s. Some people only have a mild reaction, like a flu, that is barely noticeable. A hot bath can often relieve the discomfort, while more severe reactions can require hospitalization and extreme measures.
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You said.. "If you keep stopping while doing your antibiotics every time you herx or have symptoms, you will never get better."
“NEVER” get better? Crystal ball again? Show me the proof (from someone credible) that says anyone who stops antibiotics due to a herx reaction will never get better.
It’s just not true.
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"I usually wouldnt respond so vociferously but I really believe Tincups advice in this case is bad.”
You sound like the IDSA idiots when they are just spouting off because they don't have any support for what they are saying.
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You said… "And the fact that Burrascanos guide, which has been the single best guide on antiobiotic combos, is deprecated in his/ her response”...
First- If you’ve seen any other “guide” on using antibiotic combos to treat Lyme, please post them here.
As far as I know Dr. B’s is the only one. So is it "the best", even better than others? Of course it is the best GUIDE we have, cause there aren’t any others.
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You said.. " is something I can not sit on the sidelines for.”
If I may suggest, while sitting on the sidelines please do some research so you have the facts before you once again tell someone they MUST do this and they MUST do that or they will "NEVER" get well.
You can start here. I had these pages on my list to update and due to your post I decided to do it today. Enjoy.
Collection of Jarisch-Herxheimer Reaction Abstracts & Studies
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