posted
I have not been dx yet...still awaiting test results....i am also going to call Igenex on Monday and get the ball rolling with that..
Is anyone on tetracycline for treatment?
How much?
thanks for the info,
Lesley
Posts: 120 | From NB Canada | Registered: Jan 2006
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
Yes, Lesley we have been treated with tetra, two of us made very good progress and the third good progress, be has babs so that complicates treatment.
My son was put on 750mg a day. It was his first time treated. My husband and I were put on 1500mg. I had had several short courses of abx previously, my husband none, but he is the one with babs. It's a good drug to start with if you can tolerate it. Inexpensive too.
Posts: 1572 | From Pa | Registered: Jun 2001
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A good friend of mine, recently diagnosed with Lyme after 15 years, has just started his 2nd month of Tetracycline. Like mlkeen, he is on 1500 mg. a day. He does 2 doses of 750, but it's also possible to do 3 doses of 500.
He's seen significant improvement in his cognitive / neuro symptoms, although still has far to go. But it does seem to be a promising start.
Hope this helps.
Aviva
Posts: 532 | From southeast US | Registered: Oct 2005
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posted
Tetracycline is a close cousin to doxy. Works for some.
WElcome!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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BostonLyme2005
Unregistered
posted
AWESOME!!!!
Tetra post! Cool!!!!
Hi, I am Rob, live in Boston. I have been on Tetracycline for over 3 months now. I was on Amox. 1500mg's a day for almost 3 months.
Tetra is also 1500mg's a day. I maybe had some baby herxes while on Amox, but NOTHING like what I have been living through while on Tetra!!
After a few months I have had some day where I felt pretty good, it felt like my energy levels were up, I mean I noticed a difference, for three days, two different times.
I NEVER stop taking the meds, NEVER!!!! I did not go to the LLMD to stop! I know some people need to, thats cool.
I eat lots of yogurt and drink water and ad lemon once a day, that is it! Take the Tetra, YOU WILL GET BETTER!!!
Within a few days my sleep improved greatly. I also had some wild spasms, fatigue, arthritis pain, joint pain, burning pain, etc....
posted
I took Tetracycline for 28 days, 750mg a day in three doses.
Could hardly wait till I got off of it. It was VERY hard on my stomach. Made me nauseated and pain. Not fun.
I took the recommened 7 days off, and then started taking Doxycycline. It is easier to take than tet, but now after three weeks of 400mg a day in two doses, my stomach is getting bad again. One week to go and can get off it. Hope I make it.
Then I was going to take a week off and go on Amoxicillin, but don't know IF I will or not right away. I feel so much better on herbs only. I understand from some that they can take Amoxy easier then doxy or tet. Hope so.
Nal
Frequent Contributor (1K+ posts)
Member # 6801
posted
Im on Doxycyclene right now. I am only on 5mg a day. Yes, I have SEVERE sensitivities to meds so my dr ordered the 5 mg pills that I pick up at a compounding pharmacy here in town.
I havent noticed a difference yet but I am hoping SOMETHING will help!
nancy
-------------------- Life is 10% what happens to you, 90% how you respond to it!
-Chuck Swindoll Posts: 1594 | From Colorado | Registered: Jan 2005
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posted
After seven weeks of doxy and biaxin, my llmd has me stopping abx for two weeks...then I will start tetra 1500/day and Biaxin 1000/day.
Will this kill me? I hope not. You know, I was afraid of going off abx, but now on the third day off, I HAVE NO SYMPTOMS!
What's up? I was so ill for seven weeks, dying practically. Now without abx, I am like a new person. (Well, I have some slight stuff, but I am not crying with pain like I had been...)
Will keep you posted.
-------------------- We are spiritual beings on a human journey...
HumanBeing, you were herxing my friend! When you stop the meds, many people feel better, some feel good a few days/wks into the meds...
If the meds are strong enough, and you do have Lyme in your body, then there will be a reaction, and not a favorable one, and it can last awhile, come and go!
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I see Dr. D. No Breaks! I don't want to! I am taking 1500mgs a day...That is what I was given. Not sure why you need to take both meds...Maybe you have two different germs to kill?
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I'll jump in on your question about taking Tetra in 2 vs 3 doses, since my friend sees Dr. P as well:
Dr. P said that either way was okay, but if you can tolerate the higher dose, it's more effective to do 2 doses of 750 mg/day. It also helps reduce complications around timing of meals and probiotics.
So far he's just on Tetra, so don't know about Biaxin.
best regards, Aviva
Posts: 532 | From southeast US | Registered: Oct 2005
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posted
Thanks Viva and boston, I don't know why two drugs either but I guess that is what dr. P likes to do...don't know if I hav babs was just tested.
Boston, Do you take your 1500mg two times a day? How is your stomach holding up? Thanks
-------------------- We are spiritual beings on a human journey...
Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
I take 1500 mg TID. Rationale is that tetracykline level is more stable when given every 8 hours.
Good stuff! I am on it for little over 6 weeks. It is touching my most abx resistant symptoms. I am going to stick to it for a long time.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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JimBoB
Unregistered
posted
I took the Tet three times a day, but could hardly WAIT to get rid of them. I have two unopened bottles here and they will probably stay that way.
They killed my stomach, both pain and nausea. Ugh!
AND I was only on 750mg a day, divided into the three doses.
Now I am on the doxycyline at 400mg a day divided into two doses. It was good at first, but now the past week my stomach is getting real bad again. 6 days to go, the Halleluliah, a 7 day break. Herbs only then.
THEN I may or may not go with Amoxicillin for 28 days. Might just put that on hold for a month or so and see how I do on the herbs by themselves.
I take 750mg's in the morn, then in the early eve.....I eat 20-30 mins after taking the meds...I only eat yogurt 3 hrs after taking the meds, and during the day until 3 hrs before taking second dose...
I am not having any probs with taking the abx, none at all..Just have probs with herxing....Ups and Downs as usual!
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posted
I have been taking tetra for just shy of 2 months now. I am taking it 1500mg twice a day (though it wasn't until 2 weeks ago that I realized that I was doing 1000mg three times a day - doh!).
No major stomach issues. I eat gobs of yogurt. I should be better at taking the probiotics, but then I am still trying to get used to this routine.
I haven't had what I would call a clear cut herx. My first week I had a real stiff neck. That passed, and since nothing major. At most maybe some slight worsening in my usual symptoms and a few minor new ones.
I will say this, though. Over the last 3 weeks I have been workinglike a maniac. Like a full 8 hour day, take a break at home for a bit, and then back in the office from 7pm until 1am. Get up at 6am and do it again. All I need is a nap here and there and I am fine. This is really unusual for me - the stamina.
I have also noticed that my handwriting and computer mouse use have improved. My hand/feet fine motor skills have been one of my major symptoms, and suddenly I am realizing it's better.
I hope this is all due to the treatment and not just a "lull" that will come back.
Good luck, all
Posts: 36 | From Boston, MA | Registered: Sep 2004
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PS BostonLyme: I am also at the boston area and been 2 months into Lyme detection, I was wondering if you are open to phone conversation?
Posts: 46 | From Cambridge, MA | Registered: Feb 2006
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posted
Am I reading some of you correctly, that you are taking tetracycline at doses of 750mg morning, 750mg mid-day and 750 mg in the evening? 2250mg/day?
And Feesher you are taking 1500mg in the am and 1500mg in the pm? So 3,000mg/day?
I'm just suprised at the high doses. Anyone taking it 1000mg am and 1000mg pm? That's what I was just recommended to do today by me LLMD.
Anyone have any lab abnormalities on those high doses? creatinines ok? LFT's ok?
Posts: 211 | From NC | Registered: Dec 2005
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Did I read you right? You are taking tetracycline 15000mg am, 1500mg mid day and 1500mg in the afternoon? 4500mg/day and all your labs are staying normal?
Are you a man? a large man? just seems like high doses to me...
thanks!
Posts: 211 | From NC | Registered: Dec 2005
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posted
I took 750mg twice a day and 1000mg twice a day. I saw the most improvement from the higher dose.
According to my LLMD, tetra is most effective if give less times per day at higher doses - for example, 750mg twice a day is better than 500mg three times a day. The higher peaks work better at killing the bacteria.
Good luck! I saw some great improvement and some crazy neurological flares from tetra.
Posts: 98 | From MA | Registered: Dec 2005
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posted
I'm on my 2nd round of tetra. Last year I took it from from December to May. I switched to Plaquenil & Biaxin from May - November & now I'm back on Tetra.
I take 750mgs twice a day (total 1,500 mgs). My Stomach is fine. I take probiotics faithfully. Tetra is the most effective drug I have taken.
I often herx shortly after taking it. When it is bad I eat 20 minutes after taking it, preferably something with some fat in it. Thus seems to slow the herx & help manage toxins. When the reaction is not so strong I wait longer to eat.
I used to take it before breakfast & before dinner. Recently I switched to taking the evening dose around 9 or 10pm. I eat something a half hour later & then stay up for at least 2 or 3 hours and take theralac (great probiotic) before bed. Herxing around dinner time was not fitting into my schedule so the new late night approach is easier.
I have made huge progress on Tetra. The biggest negative is it makes me gain weight. I saw Dr. D. this week and he says weight gain is a side effect. The Tetra causes the body to store all it can. He gave me the option of going off it but I'm going to stick with it until May since I'm making progress. Fortunately I am able to exercise again.
Before Tetra I was on Doxy. It was very hard on my stomach, made me more sun sensitive than Tetra and simply did not work. Tetra is giving me my life back.
hatsnscarfs
Posts: 956 | From MA | Registered: Nov 2004
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BostonLyme2005
Unregistered
posted
Hi Radha,
Absolutely! I would enjoy speaking with anyone from Lymenet and the boston area, not a prob!
I have some good days, like yesterday, Friday, was feeling good, still herxing, but good!
I will see my LLMD on Wed. I will see what he has in mind for me next.
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Most days are ok for me. I have been at home due the problems with not much escape. I am not sure how to go about it, I dont know how to use the private messenger, could you let me know how.
Radha
Posts: 46 | From Cambridge, MA | Registered: Feb 2006
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Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
I take 500 mg every 8 hours.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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posted
Have any of you been given Flagyl to either alternate or to intersperse with your Tetracycline doses?
I have been using Tetracycline for awhile now and am having good results, but I think I am seeing alot of cysts in the darkfield.
Posts: 714 | From San Antonio TX | Registered: Oct 2004
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JimBoB
Unregistered
posted
You are bound to see cysts if ALL you are taking is tetracycline. THAT is the nature of the beast.
You need to at least stop for awhile every month for a week or two.
BUT you need to take a good herbal protocol also. THAT is the only way you are going to beat this. ABX rarely does it by itself IF you have had Lyme for any length of time. eg Chronic Lyme.
My LLMD started me out on Doryx (doxy) at 100mg (that's one hundred mgs) daily x one month.
He said he has to start me out very slowly, since I have neuro lyme.
I go back Monday so he will probably increase it. He said "I get more aggressive with treatment at every visit."
I don't know if I'll be able to handle more than what I'm currently taking.
I've been having pretty bad stomach pain and other GI problems on this low dose.
I also take four Acidophilus caps daily and have been eating yogurt as well.
Problem is that I've been having pain and nausea from eating and have practically no appetite now.
I used to eat like a horse! Now I have to force feed myself.
I've also lost about 6 lbs in a week. I couldn't lose weight like that even when I wanted to.
I don't know how I'll handle more and more ABTs.
-------------------- ~Kelly
"Had I not known I was dead already, I would have mourned my loss of life."
Posts: 22 | From New Jersey | Registered: Jan 2006
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Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
Often people tolerate tetracykline better than doxy.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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JimBoB
Unregistered
posted
I personally found Tetracycline the worst. Doxy at least was tolerable for about three weeks at the 400mg I was taking. BUT then IT got worse also.
C-salts helped quite a bit, but still couldn't overcome all the adversa affects.
NOW after being off Doxy since last Tuesday, my stomache is almost normal. Finally.
I am still doing a full herbal protocol so the brain fog, bad vision and pain is almost all gone now too.
Definitely NOT going back on abx. Yuck.
Can't understand WHY anyone would want to be on them IF they feel anywhere's near as bad as I did on them.
I would definitely get a different LLMD who prescribed a lot less abx and a LOT more herbs.
posted
Human, of course you will feel better OFF than ON.
The tetracycline will probably make you feel even worse than the Doxycycline. Most doctors don't prescribe tetra any more since it is so hard on the stomach. Doxy replaced it several years ago.
At least that is what my duck told ME.
I feel for you. But only a little. YOU have the choice to take herbs instead. So you can feel better too. It is YOUR choice how you feel. Not the ducks and the Spirochetes.
I would rather FEEL good and it took a little longer to cure than feel deathly sick for months at a time ON something.
posted
For me Doxy was extremely hard on my stomach. I was only taking 100mgs. I could not imagine taking the dose really needed to kill Lyme.
In comparison Tetra is a piece of cake (actually I can't eat cake on the anti yeast diet)as far as my stomach is concerned. I did tetra for 6 months last year and am on my 5th month this time around.
Tetra is hard for other reasons, like feeling shaky & vibrating and hungry after I take it. But it is much easier on my gut that I expected.
I always take it with a lot of water and eat a meal or at least a snack (preferably containing fat & protein) 20 minutes after. I take probiotics and follow a strict anti yeast diet. I eat small meals frequently throughout the day. This prevents nausea.
I did all these things while taking doxy and it felt like it was burning a hole in my stomach.
Bottom line. We each react differently to different drugs. Last year when I took tetra it made foods taste strange. Coffee tasted so bad I quit drinking it (a miracle). Tea tasted sweet like there was sugar in it! This time around my taste is not affected!
I like that Dr. D. is interested in how his patients react to the different drugs and inquires & informs. I think his suggestion of eating 20 minutes after tetra is good for protecting the stomach and controlling herxing. hats
Posts: 956 | From MA | Registered: Nov 2004
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BostonLyme2005
Unregistered
posted
I have eaten just about everything under the sun while on Tetra. Tons of food, whatever.
No Yeast probs here! MMMMMM! Never had a prob with Doxy, Amox, Tetra, nothing! MMMM!!!
Sometimes I take the abx hours after eating a meal, no probs here!!!! MMMMMM!!!
posted
Like I SAID, I was only reporting what the ducks told me the reason was for going to Doxycycline instead of Tetracycline. I was told they both work about the same for most bacteria, but doxy was invented to be easier on the stomach.
Tetracycline was harder on my stomach than doxy, but the doxy just took longer for me to be in severe pain with it.
NOW I am NOT going on any more abx. Going to stick with the herbs. I feel MUCH better on the alone. Plus they get rid of the symptoms of Lyme better.
posted
I am going to be taking Tetra for another 3 months....
I just seen my LLMD this week, he thinks Tetra is working and would like to do a complete 6-7 months before Biaxin! Maybe something with that as well???? We'll see!
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JimBoB
Unregistered
posted
Good Luck, Boston2005, HOPE it doesn't rip your guts out.
posted
how have people found that minocycline compares to tetra? and doxy, doxy still also has unbearable stomach side effects for many.
Posts: 244 | From Ottawa | Registered: Dec 2005
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I will see what he has in mind for me next.
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