posted
This is a follow up post to my recent post of 3/1, on this Medical Questions forum, Symptoms
As I said in that post after describing my symptoms, I convinced my VA Dr. to treat me as if I have CLD and showed him Dr.D's (of MA) protocol for treatment with Tetra, which is widley published on the web.
He prescribed tetracycline , and I took it around 7 to 8 months.
I remember reading that treating with this drug could be rough going at first though I didn't know what that meant.
I felt better the 1st month then began feeling worse and worse till this January when I felt so sick that I stopped taking the Tetra.
Lo and behold, I felt better immediately and have been feeling very good and basically symptom free for over a month. But I'm worried about a relapse. My doctor had no experience with this disease or treatment and now he has been transferred away, anyway.
My questions:
1. What do they mean "it can be rough" on Tetra?
2. Any idea why I felt so sick while on the Tetra.
3. Dr. D's treatment recommends 18 months on my dosage of Tetra, but I did 7 or 8 and feel better?
4. I've heard of pulsing which I take to mean going on and off the meds.
I'm considering going back on the Tetra as I have several months supply left but I'm wondering if I should and if so, how long to go back on. What do you think?
I'm still planning on seeing a Lyme Specialist in CT and am going through the list I received from this friendly forum.
Any comments or advice will be appreciated.
****Please use only the initial of last name when referring to LLMD's here --- also, no dosages except for initial treatment with doxy ****
[ 03-03-2011, 11:44 AM: Message edited by: Lymetoo ]
Posts: 81 | From Rhode Island | Registered: Nov 2010
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
Edit this post and take out the Doctors name!
You can only use> Dr. D from MA.
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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posted
"I felt better the 1st month then began feeling worse and worse till this January when I felt so sick that I stopped taking the Tetra."
-- THAT is what is meant by feeling rough. It is best to treat until your symptoms have been gone at LEAST 2 months. It would be a good idea to be checked for coinfections before stopping any treatment.
Any antibiotic which is effective for Lyme will cause you to "herx" .. this is what happened to you.
Hope this helps!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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quote:Originally posted by Lymetoo: "I felt better the 1st month then began feeling worse and worse till this January when I felt so sick that I stopped taking the Tetra."
-- THAT is what is meant by feeling rough. It is best to treat until your symptoms have been gone at LEAST 2 months. It would be a good idea to be checked for coinfections before stopping any treatment.
Any antibiotic which is effective for Lyme will cause you to "herx" .. this is what happened to you.
Hope this helps!!
-- --
Yes! Herxing. That term has been so confusing to me. I take it to mean that the parasite or infection is acting up in response to the meds causing the patient to feel worse.
Thanks for helping to clear that up for me.
Posts: 81 | From Rhode Island | Registered: Nov 2010
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I searched **** and the above post came up with the title ****.
Dr. Burrassacco's name is widely used here and not abbreviated either. These are people who publish research on Lyme Disease under their own names. I guess the problem is with consistency. But I will abide by the forum rules.
[ 03-03-2011, 12:04 PM: Message edited by: Lymetoo ]
Posts: 81 | From Rhode Island | Registered: Nov 2010
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posted
You need to look again... it's not there. It was edited the other day. Perhaps it showed up in a search unedited. We are trying to protect our LLMD's. You are not helping.
DR B is not a practicing LLMD.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
So, in a way, Lymetoo, the herxing I experienced while on the Tetra is a kind of confirmation that I do indeed have CLD, or would that be jumping to conclusions or making a false assumption based on incomplete or misinterpreted information.
Posts: 81 | From Rhode Island | Registered: Nov 2010
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quote:Originally posted by rajon: So, in a way, Lymetoo, the herxing I experienced while on the Tetra is a kind of confirmation that I do indeed have CLD, ...
- Yes, absolutely!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
Lymetoo just informed you (It is not allowed, published or not) know you put (Dr. B.) name in your post.
Also, I don�t appreciate this comment below, if it was directed at me. We all go by the rules here!!!
(However, unless you are an official moderator of this forum, please, leave the policing to those tasked to enforce policy.)
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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posted
Actually, rajon.. It IS his job... everyone here is asked to alert the moderators if they see that rules have been violated.
They are asked to "report a post" .. it's down in the lower right hand section of each post.
As moderators, we don't open every single thread and can easily miss violations. Posting names of dr's is something we all get very nervous about.
It is very common for members to let posters know that a rule has been violated. They do that in hopes that the person can edit it themselves while waiting for a moderator to come by.
The moderators are all volunteers and we don't just sit around on the computer all day. (well, sometimes I'm guilty of that! )
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
We should agree to disagree and put this topic to rest.
"Reporting a post" through the forum's procedure providing for that and a forum user (who is not a moderator) correcting a poster on a thread are two entirely different things.
Perhaps guidelines should be established for these kinds of interactions.
Posts: 81 | From Rhode Island | Registered: Nov 2010
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posted
I just read the Herxheimer document and it is very clear that that is what I was experiencing.
I have read that they once called Syphilis "The Great Imitator" for the way it was difficult to diagnose and the way it mimicked other diseases, attacking the body wherever there was a weakness.
Now, some refer to CLD as "The Great Imitator." It's all becoming clear.
I guess, in retrospect, that I did well in being pro-active and making my case to my VA doctor convincing him to try Dr. D's protocol and to treat me with Terto. But a doctor more experienced in treating Chronic Lyme would have known what to expect and would have counseled me as my symptoms grew worse.
However, in the VA system, we have no way of contacting our primary care doctor except for a visit every three months. He did me a favor and took a chance, and now he's left the VA in disgust at the way they practice medicine. Hats off to Dr. J. for being open-minded and not being dismissive like so many others have been.
Because of his willingness to take a shot and my research on Dr. D's protocol I'm now in a period of remission and hopeful that I will recover further when I am being treated by a good Lyme specialist.
Posts: 81 | From Rhode Island | Registered: Nov 2010
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