Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Hi all,
There is a lot of collective wisdom and experience in this net, so please let me hear your thoughts on this. Many thanks!
My LLMD, highly recommended as LL, does not believe in the cyst phase of the Bb bacteria. I have only seen him twice, and last time brought him a list of published studies with evidence of the cyst phase, as well as imagery of the cyst phase available on-line. He dismisses it all as bad science, and says that the evidence of the cyst phase is too weak.
I was surprised. Of course, this is not just a debating point - it has great implications for treatment!
I am taking amoxy 3 g/day, and my worst neuro-symptoms, are just not getting much better. I will see him in about 3 weeks and give him an update.
I have seen him only twice, starting July. I made some progress, for sure, during the first month, but I think that all may be due to the 400 mg/day/doxy I took for 10 days before starting the Amoxy in late July. My symptoms have been slowly creeping back since some improvement (such as reduced facial numbness, reduced brain fog, more energy)
My lyme is late-stage; I have had it for at least eight years....my neuro symptoms got especially bad in the last two years and finally, with some good advice from a nurse, we figured out what it was....
Thanks for your thoughts! How controversial is the evidence on the cyst phase?
Posts: 2557 | From home | Registered: Aug 2006
| IP: Logged |
I haven't heard any debates here over the ability of lyme to go into cyst form. Just debates over how to deal with and treat cysts.
It seems that you have read up on the cyst form and with good reason are concerned about this doctors approach.
I have discussed my concerns with my LLMD and LLNP-both eradicating and preventing further formation-and neither has said that the science and theory behind lyme cyst formation is controversial or weak.
Curious what others will have to say. As you said, there is much collective wisdom and experience on this board.
I just looked and saw that Lymetoo is already collecting info for you!
Posts: 628 | From the south | Registered: Dec 2005
| IP: Logged |
posted
As far as cyst conversion go's...do all ABX's promote it about the same,or are there notable differences? Alan
-------------------- Charter member of the ~ Delux Toasting Club ~ Our Moto: "Take No Prisoners" Posts: 95 | From San Diego | Registered: Nov 2005
| IP: Logged |
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
There are many people in the medical profession who do not believe in the cyst form. I've never heard of an LLMD not believing though.
On another note, I got much worse when I was on just amoxycillin. In my personal non-medically trained opinion, amoxy is not enough. And my LLMD never thought it was enough. She just thought it would keep it at bay while I was dealing with other health issues.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
| IP: Logged |
quote:Originally posted by Thereminator: As far as cyst conversion go's...do all ABX's promote it about the same,or are there notable differences? Alan
Mostly the beta lactams - amox, pcn etc. Less so or not at all with tcn, doxy, metro, etc.
jon
-------------------- ret ER MD (25yrs), lyme 19yr DX 6/06, guitarslinger www.LifePathGuide.com Posts: 28 | From Willits, California | Registered: Sep 2006
| IP: Logged |
Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Thank you so much everyone for all this information -- you guys are awesome and the best!
This is very helpful.
I am wishing good health for everyone.
Posts: 2557 | From home | Registered: Aug 2006
| IP: Logged |
posted
I have heard that some people have done well on amox - I was not one of them. I also suspected relapsing on amox - I personally will not go on it again. The best meds for me have been IV rocephine then iv zith. Doxy was the first med I took with very good results- I have been on doxy 3 times in treatment. I also have done well with oral zith/malarone/art combo for babs. Flagly also for cyst form but then again flagly with also help against babs too. Ceftin worked well but it was pretty hard on the gi tract. Currently on the end stages of treatment with onmicef and it is working well. Will also be on leviquin next to make sure bart is gone all the way.
Posts: 582 | From milwaukee wi | Registered: May 2005
| IP: Logged |
Carol B
Unregistered
posted
I knew there was something I forgot to do today-and sitting here with headphones on,reading lymenet, I realized it was take my antibiotics.
So I took off my headphones, laid them down, and forgot what it was I supposed to do- that quick. So I came back to reading this thread-and the lightbulb went off(or is it on) again that I was supposed to take my meds.
I think I make it three days in a row remembering to take all my meds.
and just now, when I wanted to hit replay for the song I am listening to-I hit reply instead before finishing my response. Hence the edit.
Wish I could forget I have lyme disease that easily.
BTW ,I am listening to Enjoy Your Life by Wave Storm. I keep playing it over and over again.
posted
We have been "playing around" with the microscope for some time and done some really interesting discoveries.
While on either penicillin G or Doxy, we couldn't really see the typical spirochete-forms. Then, after adding flagyl to the edta blood, waiting for at least 4 hours, we would see the typical spirochete-form again.
From what we have seen, it seems that both doxy and penicillin G would make the spiro turn into cystic form. But of course, this is just a private experiment, nothing that has been official - yet.
sig
Posts: 155 | From Norway | Registered: Jan 2006
| IP: Logged |
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
I would say your LLMD better get off his butt and start doing search's on spirochetes and see how much work has been done on the cyst form bleb,Lform,coccoid forms.
He must be a recent convert?
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
My llmd, Dr. C in Mt Kisco, is highly recommended by many on this net -- but for sure, he does has told me that he does not accept the evidence of the cyst phase of Bb. Now I have much more info from your replies and will discuss again, but I do not think that I will convince him....
Posts: 2557 | From home | Registered: Aug 2006
| IP: Logged |
posted
Oh no, here we go again with the whole alkaline v. acidic ph debate and which is more inhospitable to the Bb. It seems like more than half of our community thinks one needs to make our body more alkaline and then I read something like this:
"The first of these is the ``inducible'' cystic Borrelia, which is easily produced by placing the corkscrew forms into a ``hostile environment'' such as liquid media containing antibiotics, or acid pH, or starvation conditions."
from the link the idfighter provided.
So, who am I supposed to believe?!
Posts: 33 | From New York | Registered: Aug 2006
| IP: Logged |
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
quote:Originally posted by Vermont_Lymie: Thank you all so much for the information!
Treepatrol, thank you so much for all the newbie links, I have learned so much.
My llmd, Dr. C in Mt Kisco, is highly recommended by many on this net -- but for sure, he does has told me that he does not accept the evidence of the cyst phase of Bb. Now I have much more info from your replies and will discuss again, but I do not think that I will convince him....
Your very much welcome
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
I'm confused about this. I've heard at least one LLMD say that too (not yet found in humans), while others say they have. Well, at the very least, cysts been observed in a human tissue model:
J Infect Dis. 2005 May 15;191(10):1747-54. Epub 2005 Apr 6.
Invasion of human tissue ex vivo by Borrelia burgdorferi.
Duray PH, Yin SR, Ito Y, Bezrukov L, Cox C, Cho MS, Fitzgerald W, Dorward D, Zimmerberg J, Margolis L.
Department of Pathology, National Cancer Institute, National Institutes of Health, Bethesda, Maryland 20892, USA. [email protected]
Borrelia burgdorferi sensu stricto is an etiological agent of Lyme disease. The lack of an adequate ex vivo system for human tissue infection is an obstacle to fully understanding the molecular mechanisms of invasion of tissue by B. burgdorferi and its adaptation within the human host. Here, we report on the development of such a system. We inoculated blocks of human tonsillar tissue with B. burgdorferi spirochetes, cultured them in a low-shear rotating wall vessel (RWV) bioreactor, and analyzed them using light and electron microscopy, nested polymerase chain reaction (PCR), and quantitative real-time PCR. Also, we evaluated the expression of the outer surface proteins (Osps) OspA and OspC by use of quantitative Western blotting. Light and electron microscopic analysis revealed multiple spirochetes localized extracellularly within the tissue, and their identity was confirmed by PCR. Quantification of spirochetes inside the RWV-cultured tonsillar tissue demonstrated that the number of B. burgdorferi exceeded the initial inoculum by an order of magnitude, indicating that spirochetes replicated in the tissue. Electron microscopic analysis showed that some spirochetes were arranged in cystic structures and that invading spirochetes differentially expressed surface proteins; both of these features have been described for infected tissues in vivo. The system we have developed can be used to study B. burgdorferi pathogenesis under controlled conditions ex vivo, in particular to explore the gene activation responsible for the adaptation of B. burgdorferi to human tissue that leads to Lyme disease. (PMID: 15838803)
Posts: 621 | From US | Registered: Jun 2006
| IP: Logged |
posted
Just to add more to the debate. I get a lot of art and bio-feed testing done throughout my treatment. About 14 months into treatment we started to look at what percentage of my lyme was in cyst mode. About 35% to 40% kept coming up for about 3 months. I went on a ABX break for 10 weeks and stayed on hebal and homepathics and artimisin. 4 weeks into the break I had one of the biggest herxes that reminded be of my fist symptoms. After about a week of this is passed and I felt great - my cyst level testing dropped to 5% - go figure. For what its worth.
Posts: 582 | From milwaukee wi | Registered: May 2005
| IP: Logged |
posted
Johnlyme, How could you measure the level of the cysts? I dont understand. I know Bradford has a high powered microscope that allegedly sees the cyst form in the blood, but I don't believe it. So how was your cyst form measured?
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
| IP: Logged |
posted
I truely believe that there is a revolution that is occuring in the medical profession of those who use ART, muscle testing and computerized bio-feed testing. Our bodies have all the answers, we just need to understand how to use various methods to tap into this knowledge. There are some very talented people out there who know how to use these technologies.
In the case I stated above - both computerized biofeed and art testing was used. The biofeed was from a direct signal that came from the computer via complete body meridian output.
Posts: 582 | From milwaukee wi | Registered: May 2005
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
Alan
![[group hug]](graemlins/grouphug.gif)
![[Frown]](frown.gif)
![[Big Grin]](biggrin.gif)
Printer-friendly view of this topic