posted
I saw Dr D. today and as expected I'm switching back to tetracycline now after 6 months of Plaquenil & Biaxin. I did well on that combo until the last few weeks.
I'm trying to time the switch as best I can. I'm tempted to start tomorrow since I'm already feeling bad. I have to go to work though.
What were your experiences switching back to tetra? The first time I was on it I felt better for 3 weeks and then mega herx the 3rd & 4th weeks.
hatsnscarfs
Posts: 956 | From MA | Registered: Nov 2004
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Just did the same switch at the start of last month. Was ok for the first couple of weeks. Then I experienced the same headache for 3 weeks.
Dr. D suggested taking a few days off. Which I did and have had some headaches but not constant. I do have lesions not really sure if that matters.
How long has he been treating you? I have been seeing him since 3/05. Things were really bad when I started treatment. I was in bed for a month. Really thought I was going to die.
Things have gotten better slowly. I saw my Neuro last week and have reflexes back in my ankles. Which is a step in the right direction.
I still don't have them in my left arm or either wrist. The road back sure is slow. I also know I did not get this way overnight.
Best of luck.
Posts: 221 | From S. Florida/Massachusetts | Registered: Mar 2005
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posted
Hello hats,the tetra was good for me the first two months and then i plateud.I do enjoy the appetite with tetra,Im on rocephin now and have quite the appetite on this too.I go back to dr d in december and Im sure I will be going back to tetra when Im done with the IV.I remember you said you were feeling well,did you plateau on the biaxin?My guess is you will herx again because of the switch.
Posts: 308 | From new bedford,Ma. | Registered: Dec 2004
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posted
Prconn, Is this your first time on tetra? Dr. D. says the first time is the worst. I started lyme treatment 8/04, doxy. Started with Dr. D. 12/04. Making progress, but I agree it is slow and has plenty of ups & downs. Keeping a daily journal helps me to see how much progress I have made.
Chainsaw, I'm not sure if I plateaued. I have been continuing to make progress. This past week though things got worse. I think it's time for a drug switch.
The problems could be related to diet. After not eating ANY grains, fruit or sugar since last May I had rice, tofu & a little pasta this week, also had a bite of a cookie. Now my skin is itching, my ankles feel like they're being poked with pins, my head hurts, I'm naseous. Yick, I'm going back to the super strict diet. hats
Posts: 956 | From MA | Registered: Nov 2004
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posted
Cant really give any meaningful input here but I will see him the end of this month after 4 months on Biaxan & Plaq.
I had taken tetra for a couple months before seing him 4 months ago and tetra was the first abx that did anything and it knocked me down to the ground. I had to stop for a while so I could get to the store and get food.
Im starting to have some good days now but that didnt happen till I started th chlorella. I must have had a lot of toxic sludge in me cuz this stuff really made a difference.
Its too soon to tell if it will last but Im enjoying the good days I have. Still crash after having a good day and overdoing but its worth it to be able to do some mundane thing.
I will let you know what happens with the tetra if that what he does.
PS: I was able to read a novel for the first time in over 4 years and I cant tell you how wonderful having reading in my life is. Such a pleasure, tonic and gives me hope for a better tomorrow.
Better health to us all.
Posts: 561 | From connecticut | Registered: May 2004
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henson2
Frequent Contributor (1K+ posts)
Member # 463
posted
Hi,
I was put back on Tetra, too, in late September. We spent *a lot* of time talking about what to put me on. I had not been compliant on any abx for a year, as I kept not being able to tolerate it while I needed to perform well academically. (He was extremely kind to me, and understood, but of course I'm obliged to be compliant now... some bad new symptoms had started, most notably edema which I had never had before). He was SO nice, though, told me not to add guilt to everything else I was going through. )
We ramped up - I am curious what dose others are taking and managing to tolerate? I started at 500 mgs per day for a week, then up to 1000 per day for a week, and then to 1500 mgs.
By the middle dose I would say I had the worst Herx of my life -- and I know that is good. I've never had such swollen and painful joints or achey all over flu "I want to die" body aches and higher fever. We were both pleased.
On the highest dose I just had too hard a time. The irony is that my awful chest pain started getting better -- but everything else got SO much worse. Then I had a very bad fall and got sent for emergency brain scan at ER. (it was normal).
He allowed me a break.
So I am ramping back up again now, but I find I can't tolerate it. Definitely knocking me on my ear. I'm taking today off and will try again.
Does it get better?
Tetra was the very first abx I took when he first dx'd me. After 4 months on Tetra, I had no noticeable Herx to speak of. The only difference was my cognitive function improved *amazingly* -- like daytime after night. I could not believe the difference! (And I thought, hey, Lyme treatment is going to be a piece of cake! What is this Herxing business people are talking about?)
So this is only the 2nd time EVER that I'm taking Tetra, and it has done a whammy on me. I don't get it. I gather it is all good news and I am really progressing. (I had been undiagnosed and untreated for almost 6 years when I found him).
I'm getting the headaches now, too -- anyone know a good remedy for that?
I know we are all different and it does not make sense to compare - we all have different manifestations and expressions of the disease.
But I was curious how other people are doing on what dose of the Tetra.
Thank you for any replies! Warm wishes to everyone to get through it quickly. Posts: 1066 | From East Coast | Registered: Dec 2000
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henson2
Frequent Contributor (1K+ posts)
Member # 463
posted
PS
Sofy -- what is chlorella?
I would be very interested to understand what it does and if it could help me.
Thanks! Posts: 1066 | From East Coast | Registered: Dec 2000
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I am so glad to see this thread!!!! I saw Dr. D for the first time last week. I was given four months of tetra, and have been afraid to start it because he said I would probably feel worse. Of course he said it's different for everyone, but I just came off of a 3 week relapse and have been feeling much better this week. I am so scared to start it! I've been on 300 mg of Doxy for two months, which has really helped. I know I need more, though. I did wait 3 months for this appt with him, and I am going to follow the treatment plan; I just don't know what to expect! I would love to hear from others about their experiences with the tetra. I am most likely going to start it tomorrow. I will be out of Doxy tomorrow so need to make my move, I guess!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
I was taking Plaquenil and Biaxin and am now taking them along with Doxy. I think Doxy is in the tetra class? I got really sick within days of taking all of them so I stopped the Biaxin and Plaquenil because I wasn't sure I was suposed to be taking all of them. Talked to Dr. D and I'm suposed to be taking all of them. So stopped the doxy and restarted the Biaxin and Plaquenil. Felt like crap. Waited a week added 1 doxy in. Felt like crap again. Waited another week and added the other doxy in. I'm tired, crabby and have some minor aches and pains. Overall, I think I'm still doing better. Fearing the herx that may be on it's way.
Posts: 441 | From USA | Registered: Jul 2004
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posted
I felt so crappy this week I decided to switch back right away. I started tetra this morning.
I'm taking 1500mgs/day. 3 capsules before breakfast & 3 before dinner.
I did the same dose last winter after being on Doxy (not enough) for 4 months and getting sicker by the day. As soon as I started tetra my brain fog lifted. It never came back more than mildly. I had several good weeks and then the worst week of my Lyme journey.
I could barely get up, My energy would plummet to nothing, not even enough to sit up. I was sprawled on the sofa for a week. There were episodes of intense vibrating, as if my blood & brain were vibrating. I was very very cold. I can't remember what else happened but I was really glad it was during Christmas vacation at a friends house rather than at work! After that I made slow steady progress.
In December 04 I was too weak to lift anything and could barely use my arms and at one point could not do 2 leg lifts. In the end of February 05 I went skiing. It felt like a miracle. I'm very grateful to Dr. D.
When on tetra I generally felt worse for a few hours after taking it. I needed to eat fatty foods. They seemed to help get the toxins under control. I'm going away this weekend & will pack boiled eggs & nuts for tetra survival food. A friend will be driving (just in case).
It was really nice not having the fake vanilla (Biaxin) & bitter (plaquenil) taste in my mouth today.
posted
I too see Dr. D and been on tetrycline since August and haven't feel better at all, still have the whole body pain, etc. I was on doxy, plaq, biaxin xl and was feeling better for 2 months then the third month felt crappy again and that's when he changed me to tetrycline. Does anyone know when Dr. D decides to put you on the IV treatment which I heard helps alot, I have not been pain free to be able to walk/work for almost 4 years now.
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