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Posted 7/8/2009 8:45 PM (GMT 0)
Just wondering how everyone has tolerated flagyl.  I was on bactrim for 3 months.  Thought i was getting better for about a month where i had more energy, less pain, and less flu like symptoms but that came crashing all down a few weeks back and I got brutally sick again.  Doc thinks it may have went into cyst form. 

I just bumped up my flagyl from 1 pill to 2 pills a day today.  Going up to the full dosage of 3 pills sunday.  Doc says you can herx quite severely on a flagyl regimen.  Not looking forward to it!!

Anyone have any success stories with this stuff...or at least improvements?

Vin

Posted 7/8/2009 9:35 PM (GMT 0)
I never personally did well on Flagyl.

LLMD put me on Tindamax and it was very easy for me to tolerate and alot less side effects.

I am seeing more and more Lymies on Tindi now.
Posted 7/8/2009 10:00 PM (GMT 0)
This made me so sick. It was horrible. I felt like i had a severe hangover for 3 months. I finally quit it because I couldnt handle it anymore. The thought of it makes me shake in my boots!

Posted 7/8/2009 11:45 PM (GMT 0)

Hi Vin.   From what I understand, Flagyl needs to be taken with anonther antibiotic.  Are you on another antibiotic with it?

I believe Tinidazole is similar to Flagyl but is supposed to be easier to tolerate.  I took Tinidazole.

When taking Flagyl, make sure you do not have alcohol of any kind (including mouthwash etc.) or you can get very sick.

I have a good article on Flagyl that I can email to you.  The link for it is no longer valid but I have the entire article.  You can email me at [email protected] if you are interested.

 

Posted 7/8/2009 11:46 PM (GMT 0)
Vin, am I correct in assuming you were bitten by a tick sometime in June or was it awhile ago and just diagnosed?

What stage of Lyme are you in...1 2 or 3
And why is Flagyl prescribed?

I'm 1st stage and on Doxycycline 100mg twice a day, probably bitten in June and only symptoms I have now or ever had were extreme fatigue and occasional tremors and of course fever when first diagnosed. Now my temp is sub normal 97

I am testing soon for co-infections and am curious about Flagyl.
Posted 7/9/2009 1:03 AM (GMT 0)

Hi mcjane.  Are you being treated by a Lyme doctor?

From what I understand, 200 mg of Doxy is not strong enough for Lyme.  I believe the recommended dose is 300-600 mg daily with 400 mg daily often prescribed.  If you have not done so, I recommend reading Dr. Joseph Burrascano's 2008 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses at http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf  He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols.  He discusses antibiotics and doses starting on page 18.   

It sounds like your infection is early which is good.  Early infections are the easiest to cure.  Getting the proper treatment now may reduce the chance of long-term complications.

Flagyl or a similar med treats the cyst form of Lyme which typically occurs later in the infection.

Are you aware of the Jarisch-Herxheimer Reaction (herx)?  Often, when people who have Lyme take antibiotics their symptoms get worse or they get new ones.  When the antibiotics kill the bacteria, toxins are released making them feel worse.  It can be scary, but it is a good sign the antibiotics are working.  During treatment it is a good idea to document your symptoms daily.   One way to do this is to list the main symptoms you have each day with a numerical rating of their severity from 1-10.  Over time when you review this, you can see when your herxes occur and how you are responding to the meds.

It is important to learn as much as possible.  I also recommend the books "Everything You Need To Know about Lyme Disease Second Edition" by Karen Vanderhoof-Forschner and "The Lyme Disease Solution" by Kenneth B. Singleton M.D.

 

Posted 7/9/2009 1:51 AM (GMT 0)
Jane,

C Pneumoniae is fine to talk about here because it is usually involved with Lyme.

Just a suggestion but I think it's very disrespectful to go back into the MS board and post again about Lyme. I'm sure most people there have already been through the Lyme testing, etc. I'm also sure that if any of the Mods there suspect Lyme that they would send them here. We've had a few people sent from the MS board already.

I know you are very passionate about the subject but forcing it down someones throat will only cause anger and in the end, they will not listen to you. They are on their own journey. If they suspect Lyme, then they are more than welcome to visit our board and get advice.

Put yourself in their shoes. I know I would be pretty irritated if someone kept telling me I had MS when I knew in my heart that I had Lyme. Just think about that please.

Thanks for listening:)
Posted 7/9/2009 4:31 AM (GMT 0)
I am on Flagyl 1 wk/month, and I feel like crap...sweaty, shaky, etc...but I'm on 250mg twice/day, and I remember being on 500mg a long time ago for something else and I'll tell you for sure that it was WAY too much for me. I do much better on the 250mg, even though it's still hard!
Posted 7/9/2009 5:43 AM (GMT 0)
jane, i understand how you feel and know this your not alone there in your feelings. but then again you may give advise but its there to do with as they please. you can not make anyone see things your way if they choise not to.

also wanted to show you from the rules on Donts, 6. No posts regarding research studies, surveys or clinical trials without obtaining prior approval from the forum administrator before posting to the forums.
this maybe why your post there was deleted. you may wish to read them over again. so your not steping on to many toes.

also some of the mods there do post in here.

i admyer your passion very much. and i understand fully why you feel as you do. never stop. just maybe tone it down a lil bit. you'll caych more flies with honey then with vinager.
Posted 7/9/2009 11:49 AM (GMT 0)
CajunGrl, very well said. You have a great way with words and thinking!
Posted 7/10/2009 2:53 AM (GMT 0)
Hi guys, sorry it took a while too respond. it felt like i got hit with a truck today. i could barely move the first half of the day and i had to leave work early because i coulndt keep my eyes open or my head up and i was burning and freezing at the same time. i have a little more energy now, but the joint pain in my fingers, ankles, wrists, etc are bad and i have a heck of a headache. im not sure if i have indigestions either but i have been having a tight feeling in my chest and sometimes i seem to be laboring for breath..more so since yesterday. I am normaly an athlete.

This is some rough stuff. My dr's intent was to start me on flagyl and slowly titrate up beacuse ive herxed very bad in the past, esp on bactrim. After stabilizing a bit on the full dosage of flagyl, i am to go up on bactrim slowly again also. im at 2 pills a day as of yesterday. full dose is 250 x3

I've been on flagyl before and tolerated it well for the chrons/colitis outbreaks ive had in the past. but this time...wow. BRUTAL!!

Ticker I am goin to email you. Vin1382.

Vin
Posted 7/10/2009 3:03 AM (GMT 0)
Does Flagyl make anyone sweaty and anxious and dizzy?! My balance is worse this time around for sure...and I barely exert myself and I'm sweaty and hot...???
Posted 7/10/2009 4:14 AM (GMT 0)
Ticker, no I am not being treated by a LLMD. I asked my PCP when I had my Rx filled if he would prescribe 200 mg of Doxy twice a day and he said 100 twice a day was enough. The Rx was for 60 tabs (hate the capsules)
So...what I did was take two 100mg tabs twice yesterday doubling the dose and the two today, will be taking my next two in about an hour, doubling the dose again. Guess what I felt great today, feel great now and will let you know if I feel great tomorrow. I even ate food for dinner, not my usual Ensure, and it tasted great.
I know you are supposed to follow doctors orders, but just about everyone here knows a lot more about Lyme than he does, including me. (he had no idea what I meant when I mentioned Jarish-Herxheimer Symptoms) so I took it upon my self to do what is said that a LLMD would prescribe and I'm grateful that I read that information here and I feel sure it was the right thing for me to do.

In no way am I suggesting or advising that anyone not follow their doctors orders. I am just posting what I chose to do and did it because I think it's the right thing for me and may not be for you.

Yes Ticker I do know about herxing...learned about it here and knew right away why the more treatment I had the worse I felt, but that's over now, feeling much better.
I also will not be concerned about Flagyl because I am sure I was not in later stage when I was diagnosed.

At first I wasn't going to buy the books you mentioned, but changed my mind. I live in the woods and lots of wildlife around so have to be very careful about deer ticks, they love it here!
I no longer let my cats go outside the deer ticks love them too!
I need to learn all I can about Lyme Disease, will buy the books and I thank you for your reply and suggestions, you and so many others have been a great help and comfort to me.

CajunGrl & RottenDog, my name is Jane and I was wondering if you were referring to something I posted or were you, I hope, speaking of another Jane.
Posted 7/10/2009 7:53 AM (GMT 0)
mcjane, no hun we was talking to a nother jane who i guess deleted all her post. i am sorry for the confusion.
Posted 7/10/2009 8:00 AM (GMT 0)
McJane,

It was another Jane we were referring too. Sorry about that and good luck with everything.
Posted 7/11/2009 7:16 AM (GMT 0)
Well it's July 11th my third day of taking 400 mg a day of Doxycycline instead of the 200 prescribed by my PCP.

When I woke up this morning, no tremors, no fatigue.
I even went out tonight still feeling like my old self. Hoping for the same tomorrow. I feel like it's over, all symptoms gone.
Time will tell if I relapse.

I received the package from IGeneX today and don't think I'm going to use it, don't think I have to.

Again I'm not suggesting anyone do what I chose to do, follow your doctors orders and if you don't agree with what he's doing ask questions. I'm proactive about my care and question everything. This is one time I knew what I was going to do was right for me.

Thanks to all who see a LLMD and post treatments.
Posted 7/11/2009 8:52 AM (GMT 0)
Great news Mcjane! Good luck with everything hun:)
Posted 7/11/2009 12:28 PM (GMT 0)

Hi Jane.  I am so glad you are feeling better!  Please make sure you take the proper dose for six to eight weeks even if you feel fine.  This is the best time to eradicate the infection.  Your symptoms may still cycle.

The books have a lot of useful information including how to protect your property and pets from ticks.  I think it is good you don't let your cats out anymore since you are in an endemic area.  Cats and dogs can get several tick-borne diseases also.

I hope you keep improving!  Keep us posted on your progress.

Posted 7/12/2009 2:21 AM (GMT 0)
Ticker thanks for the article. hte outline below that gives a progression of most peoples reaction to flagyl...days 1-6 is EXACTLY 100% what i went tthrough except it was much worse with pain and sickness feeling. I am so not looking through the depression part. The mental part of lyme has been my worst enemy thus far.

Vin
Posted 7/12/2009 12:02 PM (GMT 0)

Hi Vin.  I also found it to be pretty accurate.  If the depression hits you hard, make sure you let your doctor know.  Maybe it will not affect you this way.

It is unreal how many symptoms a tick bite can cause!

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