posted
Personally, I'd find another LLMD, but then MAYBE you have a good one??
I personally would not do IV Rocephin without a cyst-buster.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
I just got done talking to a doctor today that suggested that monotherapy with Rocephin is not a good option and that consideration of treatment for cysts is important.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
From what I've comprehended from my readings I find it difficult to believe that you have progressed to the form of bacteria that is encased in cysts. You say you started antibiotics soon after the bite. I agree with others online, you need to do a lot more research and if you're uncomfortable with your doctor's stance after that, then switch.
Posts: 12 | From Maysville, KY | Registered: Jan 2008
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posted
Adamm - she said nueropathy is a big problem, In general she doesn't feel you need to take the risk when there is no in vivo studies to suggets they work
Kentucky- i have been treating Lyme for 2 years all orals except 1 month of rocephine early on w/ no cyst busters(different Dr.)
i wonder if taking natural cyst busters would have any effect - grapefruit seed extract and the like.
Posts: 137 | From wethersfield ct | Registered: Mar 2006
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posted
My mistake. It seems this is a bunch of studies about cyst form.Not just from one in 1999.
Posts: 137 | From wethersfield ct | Registered: Mar 2006
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
A very good study on cystic form lyme/Alzheimers.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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adamm
Unregistered
posted
That would explain why the only symptom of my grandmother,
who has had Lyme for 10 years, is dementia.
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
quote:Originally posted by ctlyme: i wonder if taking natural cyst busters would have any effect - grapefruit seed extract and the like.
I don't know, but I can tell you I get a little tired after I take my GSE! I was on Tindamax, which was knocking me on my butt. I was doing fine other than the one week per month on Tindamax, so my LLMD switched me to GSE for now. He said we might revisit Tindamax later.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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The impression i got was she absolutely believes that there is a cyst form (other bacteria also encyst she said) she just doesn't believe there is any evidence that Flagyl or Tini are effective in vivo.
That is my challenge. To find studies that show they are effective in vivo.
Which is probable unlikely for me to find if nobody here knows of any.
Posts: 137 | From wethersfield ct | Registered: Mar 2006
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Did the LLMD switch w/ the idea that the GSE is effective against the cyst form? Is that the reason you are on it?
Do you see Dr H in Hyde Park?
Posts: 137 | From wethersfield ct | Registered: Mar 2006
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tailz
Unregistered
posted
Has your LLMD treated you for coinfections?
I think coinfections are more problematic and what bring the spirochetes out of their cyst form.
He doesn't sound like an LLMD, so I'd fight him. Remember, you're his "customer". If he doesn't do what you want him to do and doesn't give you a good reason for it - fire him. I got fired enough times as a patient.
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Yes, that is my doctor.
He switched me to GSE to get the cyst form, that is the reason I'm on it.
I am doing much better, so am switching over to an herbal protocol .... I'm doing a lot more detox, and he didn't want me to feel as sick as I was on the Tindamax, so we are using GSE, which is milder.
He said we might use Tindamax later ... even in conjunction with saunas ... he said the sauna puts them in to the cyst form, then right afterward, I'll take a dose of Tindamax ... but that's in the future. For now the focus is detox.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
We as LD patients are a group that don't want to believe anything an ID Md might say and they are always immediately considered inaccurate in all they say. But, I actually hope she is right, that anything can happen outside the body in the lab! Here is footage of Bb forming cysts in a lab setting: http://www.youtube.com/watch?v=lVmCa70bAxE
I know most lyme patients like to believe our LLMD's as always being right, but the truth is so far (since LD forums are full of "uncured" patients) LLMD's apparently are missing something with so many of us sick long term. They certainly don't have treatment down to a science. My point, I don't believe they are always right and most of LD treatment is guess work. Even my LLMD said, "Med school never prepared any of us for this and we don't understand how we can remove this layer by layer and the patient is stil sick". Speculation, fact or fiction that cysts form - whatever, fine, as long as I feel better. I have had LD 2 years and so much of it still sounds so far-fetched. I still don't understand a bacteria (and I have studied it for 2 years everyday and written articles on it) that takes double dose of abx & years to kill.
I'd do the Rochephin if it were me and maybe you will be one of the lucky ones and be done with treatment.
Flagyl usually used to kill cysts, also kill many other things including parasites (giarda to name one)so if someone feels better after flagyl, maybe they killed something else entirely, there is no way of knowing.
Does anyone have any actual picture of a Bb cyst formation inside the human body? Have they been found in autopsy reports? I remain open (and even skeptical at times) to it all. All I can find are lab pictures of cysts. She could be right, who knows, lets hope so.
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