I've been posting lots of questions lately. Thanks to all for being so helpful!
I figured out tonight that the severe tingling and pain in my hands is being caused by six weeks of flagyl. So, no more flagyl for me!
Now I'm wondering what other abx are out there that are effective in the treatment of neurolyme sx. Especially the neuralgia symptoms in my head.
My LLMD said flagyl was the "only effective drug for neurolyme."
I am sure there are others out there who are unable to take or have developed adverse side effects from flagyl.
Are there any good alternative medications?
Posted by WhitneyS (Member # 25666) on :
Ummm....I would worry about your LLMD. Pretty much everyone with Lyme should be given Flagyl to kill cysts-- it really has nothing to do with neuro problems. If neuro symptoms are your primary problem-- like me, I would look into Bart treatment and detoxing protocols. Neuro symptoms are the worrrrst! Do some searches on Brain Fog and you can find some other supplements to take too.
Posted by djf2005 (Member # 11449) on :
I would steer clear of a so called LL Dr who claims Flagyl is the only effective drug for neuro Lyme.
That simply is erroneous.
Rifampin, Doxy, Rocephin and others are effective and far safer.
Rifampin especially penetrates the BBB well and is very safe.
IM Billin is also a VERY good option albeit it costly.
I have personally been on all of the above abx.
Best
Derek
Posted by Rumigirl (Member # 15091) on :
Also, Factive or Levaquin are good for neuro symptoms. BUT, you really have to watch out for the tendon problems, etc. Maybe for you that wouldn't be a good choice, given your reaction to Flagyl.
Oh, and Minocycline is good, too, crosses the BB barrier. I found it and Rifampin hard to take, but I am very sensitive.
Eek, I would be concerned about an LLMD who said that!
Posted by Abxnomore (Member # 18936) on :
Flagyl is a cyst buster. I don't think it matters what kind of lyme symptoms you are dealing with, you need a cyst buster as part of their ABX combo.
May be he meant that without flagyl you won't be able to move forward neurologically. That being said, why not try Tindamax.
It doesn't sound as thou he meant only flagyl and no other ABX treats lyme but that it's part of the mix.
Tindamax often used interchangeably with flagyl and many tolerate it better. What ever you choose, you have to have some kind of cyst buster. I think flagyl and Tindamax are thought to be the most effective ones.
Posted by seekhelp (Member # 15067) on :
I don't agree with that doc's assessment on that either. I have never read anyone here saying Flagyl is the cure-all for neuro issues, just part of an overall Dr B protocol (multi-drug). I was told to take Flagyl only by that doctor. Not one person here recommended that and said all it would do is bust open cysts and let them roam wild with no other Abx to kill the alternative forms.
Posted by 0ldman (Member # 22101) on :
My doc told me high doses of amoxicillin passes the blood brain barrier. I was on 3500mg 2x daily and it helped. Wasn't easy on the rest of me tho...
Posted by annier1071 (Member # 28977) on :
I was put on omnicef only for my neuro symptoms for two months now? Never given any type of cyst buster or anything else. According to them, this will work on neuro lyme. After three weeks I stopped have those severe brain shocks that kept tossing me from an upright position. My dizzinesss was becoming less but joint and muscle pain started severely? The last two days I have been dizzy again so I dont know what is happening now? Sure hope I didnt waste alot of time on omnicef if it isnt the right one for neuro lyme? Seems to be doing something good
Posted by Abxnomore (Member # 18936) on :
That's correct. Flagyl or Tindamax is one part of a combo protocol used to bust open cysts.
I've never heard of any protocol using only flagyl or Tindamax.
Amox is very good at passing the BBB but only in high doses. I was on 18,000mg of amox with Tindamax and biaxin or zitho, alternating.
Annier, You have just begun treatment and are very sick with neuro symptoms. My guess is he wanted to start you off slowly and also he was hoping to get you on IV, which was delayed due to insurance denial.
I'm sure it is part of your LLMD's plan to use a cyst buster in treating you but remember that treating lyme and co-infections is a long, with a capital L, term plan.
When you see him for your second visit certainly bring it up with him but I think given that you have such severe neuro symptoms he wanted to see how you reacted on the Omicef and again it was supposed to be a stop gap measure until the IV was put in place.
Given that you are only on ABX approximately two months, I don't think there is any problem with mono therapy at this point.
You have learned so much more about this illness at this point. When you see him in February ask him to give you an idea of his treatment plan and when he introduces cysts busters and combination therapies, thou anyone's' treatment plan will inevitably change based on how you react.
Posted by Blackstone (Member # 9453) on :
For Lyme itself, I highly suggest Tindamax in place of Flagyl, in my protocol.
Tindamax has the cyst-busting potential of Flagyl without many of the side effects. Sadly, there is no generic available at current (Have to love drug patents!), so it will be at whatever the "brand name" tier for prescriptions costs you through your insurance. Those without insurance, the full price is about $400 USD/month. I suggest Tindamax 500mg once a day, possibly twice.
The remainder of my protocol for Lyme includes...
Omnicef 300mg once or twice a day. A very similar drug to Rocephin, Omnicef fulfills the "traditional" anti-lyme role of cephalosporin (3rd gen). To my knowledge it has the best penetration for our uses and helps to deal with the organism in its native form.
Minocycline 100mg once or twice a day. Of the tetracycline class, minocycline is one of the most useful and penetrative, including crossing the BBB. It is also effective against some of the other coinfections.
Zithromax can be added in as well if the patient can tolerate it, 600mg per day. However, the above three are the core protocol and I usually use Zith as a substitute for one of the above temporarily, or to segue into treatment of coinfections.
In terms of Flagyl's effectiveness against tick borne pathogens itself, there are certainly other options. However, there are relatively few cyst busters that have the ability to deal with cystic organisms and also have such a wide range of activity, but Tindamax certainly has these traits as well and is tolerated better. For Lyme itself, I believe in always including a cyst buster, but it doesn't seem all LLMDs believe as I do.
Posted by Abxnomore (Member # 18936) on :
I totally agree. Tindamax is much easy to tolerate than flagyl, without the horrible side effects. It took tons of it.
For those who have access to meds from other countries you can use Tinidazole, which is what we all used before Tindamax became available in the U.S.
It's made by Pfizer and is called fasigyn but was never marketed in the U.S., only abroad. You can also have a compounding Pharmacy make Tinidazole for you. http://en.wikipedia.org/wiki/Tinidazole
I have no idea which is the cheaper route but when I used Tinidazole over ten years ago, it was ridiculously cheap, especially if you obtained it from Mexico or abroad.
It might be worth looking into, if Tindamax in the U.S. is so costly.
Posted by lymewreck36 (Member # 4395) on :
HI folks. I had extreme neuro damage from flagyl, and still I have to be careful with the Tini because of that. So it is not completely safe as some might think.
The difference between Flagyl and Tini is that tini is a larger molecule, so it prenetrates a little less than flagyl.
I know it is touted as having fewer side effects, but be careful nevertheles if you already have neuro damage.
By the way...change doctors.
Mary
Posted by annier1071 (Member # 28977) on :
wow, thought i was doing well at this point. Every time you say LONG treatment I want to give up! My LLMD said six months, the most nine. I sure hope he is right since I want to get back to work.
I get a bit frightened when I read some of these posts. I was offered shots if I wanted them instead. They told me that my GP could give me the shots since the parking there is easier than the city.
Posted by annier1071 (Member # 28977) on :
I just got the paper with the lyme ticks results. I was bitten in may 2009 by an ixodes scapularis (deer tick) which contained borreliosis, human granulocyctic ehrlichosis, and babesia.
Not sure if these are good, bad or inbetween results in treatment. I forwarded the paper to my LLMD so he can decide what we need to do next.
Posted by SashaC (Member # 18968) on :
Thank you. I am seeing a new LLMD in 4 months, just trying to limp along until then without backsliding.
I will call my LLMD tomorrow and ask if I may switch to tindamax.
The flagyl seemed to be helping control the pain in my cranial nerves, so I hated to have to stop it. Even though it made me feel so bad, my dental and jaw pain seemed to be lessening.
I was hoping that the headaches it was causing meant death to Lyme!
Posted by SashaC (Member # 18968) on :
So I continue to receive PMs from one member, whose name I shall not disclose, about the "bashing" of my doctor, whose name or location I have not mentioned.
My little girl and I are very, very sick. So much so that we rarely leave our home. Many of those days, my daughter is crying in pain and I am crawling around our home, trying to gather meds and food to care for her, when I can barely care for myself. Not a pity party, just the facts.
So maybe someone can help me decipher this statement, which I received from a source that I will not post publically:
Try flagyl (metronizadole) for the cyst form of borrelia. It has a 63% response rate. You will NOT see improvement in your severe neuroborreliosis unless you take flagyl. It is the ONLY antibiotic with a significant response rate.
Do NOT take more than ONE medication at at time. If you do not see improvement in four weeks, switch to the next medication.
Would you interpret this as "flagyl is the only effective drug for neurolyme?"
I interpreted this as exactly how I wrote it. Flagyl is the only effective med for neurolyme. If there are others, they don't work. Am I wrong?
I have really gotten so much help on this board, and I thank each and every member who has taken the time to respond to my questions.
It is really disheartening to be harrassed by one member who claims that I am misquoting the information I received.
I am trying my hardest to understand what kinds of the many, many different treatment methods may be the most beneficial for myself and my daughter.
I have repeated exhaustively, what works for one patient may not work for another. If one tailored tx worked for everyone, none of us would be on this board, would we?
It has been mentioned that I am "making up" the things I have written. I really feel like I'm in the 9th grade again.
I have read things on this board that I don't agree with, but I most certainly don't send harrassing emails to those folks who don't share the same beliefs as myself.
I have a feeling that this certain member is trying to remove me from this board because I do not share her opinions.
If I have offended anyone in my search for wellness, please let me know. That has not been and will never be my intention.
Thanks again for helping me:-)
[ 01-24-2011, 12:40 AM: Message edited by: SashaC ]
Posted by Donna2010 (Member # 30144) on :
Dear Sasha,
What is your child's disease? Is it a flu or something seasonal? Is she getting better? I completely understand where your understanding about Flagil comes from - I would think the same if I where you. If you currently have no friends or anybody that you could call for some help, I pray that God sends such your way - you definitely need some help with little child in your hands, especially a sick one. Thank you for sharing your struggle - now I know what my prayers should be most about. My heart and prayers go for you, Donna
Posted by 0ldman (Member # 22101) on :
Some people here need a reality check. Some it is due to Lyme, some are not.
Your insurance company is setting the standards and rules of how your doctor can treat you. It should be the other way around.
Flagyl is *not* used for neuro Lyme. You need something that can get into tissue and pass the blood brain barrier.
As Lyme can go into cyst form in around 30 seconds (German study on youtube.com) just treating with regular antibiotics is useless. You have to attack the cyst form. If you only attack the cyst form, if any survive from the cyst the flagyl cannot kill them. You need something else.
Bottom line, there are three forms that I know of. Intracellular, free swimming (can't remember the name) and cyst.
If you don't treat all three it is like stopping the bleeding of the left arm on an accident victim and ignoring the right arm completely. It just aint gonna work.
Posted by SashaC (Member # 18968) on :
I checked on Tindamax and, unfortunately, it is not covered by my insurance. It costs over $500 out of pocket. They suggested flagyl as an alternative...go figure!
I could rant about my distaste of insurance companies for hours!
On a wonderful note, my daughter was supposed to see the famous Lyme pediatrician Dr. J in CT, in four months. His office called today with an opening on February 7th!
So I'm thrilled that my little angel will be seeing such a fantastic LLMD. He is not cheap by any means, but I have great hope that with his guidance, my daughter can grow into adulthood without having to deal with the awful effects of Lyme.
I am so excited for both of us!
Thank you all again for being so candid and supportive.
God bless!
Posted by Donna2010 (Member # 30144) on :
Oh Sasha,
I am so happy and excited to for you and your little angel! Thank you God for listening to our prayers!!! I will keep praying for some tangible physical help for you in your everyday activities though since you need such as well... Please, excuse me, if my question is super stupid, but I am very new to this forum and this illness too: if it is not too much to ask you of how did your little girl catch it too? I am still in the process of being diagnosed myself, do not even have the results from Igenex's tests, but have some very serious symptoms looking like Lime so far. And also have a 5 year old boy who also complains from some very similar symptoms as well. If I have my bugs from a long time ago, I guess that it is not impossible to have passed them to him as well while he was growing in me? I just do not know? Please, excuse me if my questions sound way ridicules! At this point I only care to find answers, since I already look way ridicules in any other way...Thank you very much for your time and attention if you are reading my post. I wish you the best of success with the exam of your little one, and fast improvement for you and her as well! Your post about the Flagil effects on you by the way is very useful to me, since I might develop similar once not wandering where are they coming from... So, thank you very much for sharing your experience with this drug. Wish you many Blessings ahead, and keep praying for you and your precious daughter! Donna
Posted by bigstan (Member # 11699) on :
Hi Sasha, Just wanted to comment about the harassing PM's you are getting from another member.
Please block this female LOSER from PM'ing you again. You have enough on your plate with your daughter also being sick to have to worry about seeking advice and offending anyone on this board.
The majority of people are in the same boat as you. They are not doctors. You should use this board only as a way to read how other people's treatment strategies are doing. And not necessarily apply it to you and your daughters treatment plan.
What works for one often doesn't work for others. This disease has a lot to do with trial and error.
Flagyl is a wonderful drug for penetrating the CNS system. However, some people just can't be on it because of the symptoms you are describing. I would stick with your LLMD and work with him/her on different treatment.
Probably the reason your dental pain is better is because Flagyl kills anaerobic bacteria. A type of bacteria that grows in places which have little or no oxygen. (IE teeth/gum-lines, abscesses etc)
Anyways, Hope you fine better answers and block that LOSER.
Posted by CherylSue (Member # 13077) on :
My LLMD has me pulsing Flagyl two consecutive days per week. He says it avoids nerve pain because Flagyl reduces Vit. B in your body.
You may want to supplement with Extra Vit. B while taking the Flagyl.
Posted by CherylSue (Member # 13077) on :
Sasha,
Just read your post quoting the protocol of a doctor. It sounds like the first LLMD that I went to. I was only on Flagyl in small doses for 6 weeks and relapsed a few years ago.
Now I know that this is not correct per my current LLMD. He said you need another concurrent ABX to kill the Lyme bacteria once the Flagyl breaks open the cysts.
Posted by Lymetoo (Member # 743) on :
Cheryl .. this is an OLD thread and I haven't seen Sasha in at least a year.
![[Roll Eyes]](rolleyes.gif)