How does anyone make it through this? The pain is UNBELIEVABLE and NOTHING is helping bring it down.
This is off a low dose too! NO way!! Cysts can stay, they aren't causing symptoms anyway!
When will there be a treatment that doesn't torture us to death? This is crazy! I can't see "health" in this bottle.
Anyone read the MD blogs site regarding cyst-busting? He says it is like swatting at a bee hive (or something like that) yeah, well, I am being STUNG by bees it feels like on top of major cramping and neuro pain.
I mean who thought, lets really torture the sick/weak lyme patients and break open the cysts that are dormant???? Dr. B in "Cure Unknown" didn't use Flagyl, neither did the author. There is obviously a way to get well without it.
I am just worn from this battle and had to vent. Posted by bonafidejason (Member # 24472) on :
I am not a doctor, but from my research it appears that nitazoxanide (alinia) is just as effective, less toxic and has less side effects. I would consider switching.
I have a rough time with flagyl too, i went to the ER last time on my tenth day. I felt better for awhile after, but then relapsed.
Posted by canefan17 (Member # 22149) on :
I started flagyl and got sick 8 hours after (wasn't a herx... was def flagyl)...
But I continued taking it and eventually it went away.
My symptoms were severe headache and nausea. I was lying on my kitchen floor for about an hour.
I finally drank some lemon water and in 30 minutes it was gone.
That was when i first said, "Damn, this lemon water stuff works."
Ha I don't know what it do... but i wasn't complaining.
Posted by feelfit (Member # 12770) on :
(((((lymebytes)))) i surely can relate...worn to the bone.....
I hear you, I am being tortured by levaquin right now...wondering what i am doing......I get your frustration.....hang in there.
Posted by Lymetoo (Member # 743) on :
Definitely from &%$#! The worst for me was the depression it caused. Very hard to get through.
I still think it's a necessary evil.. but could be wrong!
Posted by seibertneurolyme (Member # 6416) on :
Not sure that Alinia does the same thing. Hubby was on Alinia for 8 months I think. Then maybe 6 months later tried to pulse Tindamax -- lasted less than a month on that. Not sure when or if we will try another cyst buster.
Bea Seibert
Posted by seekhelp (Member # 15067) on :
If we could all be like WildCondor and pump 3,000 mg daily along with three other high dose Abx!!
Posted by springshowers (Member # 19863) on :
Seek.. I Was able to pump the high doses....
ANd Flagyl was great.
I think people have to remember that ORAL Is different that IV>>
FOR MY By FAR FAR FAR>>>
Those horrible feelings we are told are herxes??? I now question big time..
I could tolerate 5 x the dosages IV wise and also I finally made progress...
IF your feeling horrible on ORals do not believe its all a big herx.... It took me years to believe in myself because it is my body and the doctors could not fee what I was feeling...
THere is something to this.. I know it..
FOr me anyway and I read about so many who herx very badly on small amounts and that WAS ME!!
So.. well.. I do not know for sure what I am talking about but do know what I experienced..
Blessings.WE all can only learn from eachother.
Please do not compare dosages of IV to ORAL Either. And do not think you HAVE TO use the dosages that others do...
Again. for me.. IV dosages were so hugely different than oral... and as well our bodies are constantly changing with this disease and we have to listen to our own bodies.
DO not make yourself push through something when you know it does not feel right.
I finally know what a reasonable Herx is. HOw sad I suffered for so long.. through herxes thinking i was doing the right thing... ANd it was not the right thing.... it did not get me further along.. Just suffering and more suffering.
Please be careful.. and again listen to yourself.!
Blessings
Posted by lymebytes (Member # 11830) on :
Seekhelp..I hear ya and agree, WC is the ultimate fighter when it came to this at any cost was determined to get well and it paid off. If we were all able to do the same protocol this forum would be empty I am sure.
I can't do those high doses, I want to, it is just impossible, they'd have to put me in an induced coma - seriously the nerve pain is intolerable before I ever get to the abx. I wonder how Dr. B helped patients in this much pain.
This abx is just feels so awfully hard on the body it seems. I can't imagine that being a good thing. I have heard stopping abx "busts cysts". In fact, that is why people relapse when they think they are well, because cysts are dormant and cause no symptoms (possibly brain fog but that isn't for sure) the "well" patient stops abx, cysts open and they relapse I have read.
The only reason I can think that Md's make us take it is that it hits many different bacterias and it penetrates everything from the bone to the CNS deeply. Maybe they use it more as a precaution for killing parasites and other possible unknown bacterias that we may have. It is the only thing that makes sense to me, otherwise cyst busting is as easy as stopping abx.
Totally upset, angry and frustrated about this as the abx list grows shorter for me.
[ 02-18-2010, 03:27 AM: Message edited by: lymebytes ]
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by springshowers: DO not make yourself push through something when you know it does not feel right.
I finally know what a reasonable Herx is. HOw sad I suffered for so long.. through herxes thinking i was doing the right thing... ANd it was not the right thing.... it did not get me further along.. Just suffering and more suffering.
Please be careful.. and again listen to yourself.!
Absolutely true!!! Slow and steady wins the race!!!
There was someone who posted here about a conference where a dr said that there was a point in which more flagyl was not going to be any more effective than a lower dosage.
Anyone remember hearing that? I thought they mentioned 1500 mg of flagyl was all most people needed or should take.
Posted by migs (Member # 16496) on :
My issue is that, without Flagyl or Tinidazole, my brain gets heavy and I can't think straight.
24-48 hours after I add in Flagyl or Tinidazole, I become intelligent again. When I DC it due to neuropathy after about a week or so...I start to become mentally slow again within a few days.
I'm stuck with it until it gives me Cancer I guess cause I cannot live my life in a haze.
Posted by canefan17 (Member # 22149) on :
migs
That's because you have inflammation/swelling.
If an abx gives you relief in the first 48 hours it's simply because of it's anti-inflammatory abilities.
Posted by springshowers (Member # 19863) on :
I agree.. Inflammation is a HUGE Deal that we forget about and has become even at the TOP of my list of things to try to control..
When I recently got Sepsis and was in the Hospital the pain was unbearable and I was sooooooo sick. I know it was the increased inflammation throughout my body as I was trying to fight the infection.
SO why dont we all talk more about this as we are all trying to find these lower grade constant infections ongoing!
Its a big big deal.
Also for during herxes.. trying various anti inflammatory meds, foods, anit allery items... anything that will help...
Helps..
A lot of or "symptoms" are from this affect...
ANyone with other ideas on how to control this inflammation?
Its always great to hear from others to get ideas that we may not have thought of.
Posted by springshowers (Member # 19863) on :
PS
REmember Flaygl also is anti protozoan and I got a lot of benefit from that aspect as well.
Lyme too .. yes I think it is 1500 mg a day that is the most that is needed....
The more you push the more toxic you get and all sorts of things can go wrong and does go wrong.
DO not take this lightly...
More is not always better. I have tried it all ways. ANd everyone is different too. Too many variables to make blanket statements.
Way too many.. Be careful people to be thinking if you only could take the dosages that someone else did. THere is a lot more to the story than dosage.. as well.. I do not agree with anyone pushing on others that they are not taking enough to do any good just because that is what they needed.. Very dangerous thing to do..
Posted by WildCondor (Member # 434) on :
Hey!
Flagyl can be tough at first, try to stay the course...because the herxing calms down eventually. Try parsley drops every hour until it calms down and the lemon water for herxing, plus epsom salt baths.
Just to correct the above, the 3,000 mg a day I took was not in the beginning, that was the pulse therapy dose that was taken 4 days on 3 days off, 2 weeks in a row, then 2 weeks off, (so only 8 days per month.)
The starting dose is 1,500-2,000 mg/day taken for 2 months straight to burst the cysts, and then switching to a pulse program, and combining other antibiotics the entire time, especially Bicillin shots.
Stay on course and take the full dose..slivers of pills wont solve anything but delay you getting well for months to years.
Posted by migs (Member # 16496) on :
quote:Originally posted by canefan17: migs
That's because you have inflammation/swelling.
If an abx gives you relief in the first 48 hours it's simply because of it's anti-inflammatory abilities.
Even if it is the cysts causing the swelling in the brain...which I have read is common, you're probably right that my relief is the inflammation settling and that the cysts are not actually being killed within a day. Obviously I am not killing many of them because as soon as I DC the Flagyl, I am retarded very quickly.
Either way, I depend on the stuff...just can't feel good without it.
Posted by migs (Member # 16496) on :
WildCondor - parsley drops? Is that for inflammation? Haven't heard of that one yet.
Posted by lymebytes (Member # 11830) on :
WC, (I am thinkin' WC stands for World Champ since you made it through this!) This is a whole 'nother level of frustrating pain and misery. Really, this is impossible, but I will order the Parsley drops and hope!
Thanks everyone for advice, suggestions and help.
Posted by richedie (Member # 14689) on :
Interesting, I took flagyl for three months and never noticed one thing. Nothing.
Posted by randibear (Member # 11290) on :
wow, my doc started me out at 250 3 times a day. he said due to me never being treated it was best to start slow.
then i got c. diff and my gastro went to 500 3 times a day.
so can you do the 250 3 times a day for lyme? what would be the minimum you would take.
my friend, ann, can only take 250 ONCE a day. she says it just flat out puts her right down.
Posted by MariaA (Member # 9128) on :
yes, you can do 250 3 times a day. Also, I've seen it have an effect on me (with other meds) at only 250 mg once a day. After one course at that dosage, I was eventually able to increase the dose to the higher one my LLMD wanted me to take initially.
Posted by sutherngrl (Member # 16270) on :
I took 250mg 2x a day with Zith, same dosage. I did feel a little worse on flagl, but not much worse than my usual horrible sick self. I took it every day, no pulsing for one month.
Not sure what I think about loading your body up with cyst busters. Like it has been said before. Stopping antibioitics makes the cyst open up, so why be tortured with heavy doses that make you so miserable you can barely live?
Maybe we should just treat until remission, stop antibioitcs, then you relapse probably because the cyst open up, then attack again, go into remission, and repeat until well.
People have gotten well this way!
Some very smart LLMDs do not allow their patients to get extremely sick from medications. They change the meds, lower the doses, and keep treating.....slow and steady until the patient is well.
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