posted
She has info on You Tube... not sure she has what you are looking for though.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96220 | From Texas | Registered: Feb 2001
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Rumigirl
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posted
She's a reseacher, not a clinician. So she doesn't give protocols. But maybe you saw something that she wrote that suggested a protocol?
Posts: 3770 | From around | Registered: Mar 2008
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Keebler
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posted
- Check the archives at the website for Townsend Letter for some of her research [but she does not have any protocols but articles about her work do detail some supplements that some LLMDs suggest - but I would not call it a protocol, just a few things].
You might search all the Townsend archives for "lyme" as they've had many articles. One just a couple months ago. -
[ 08-20-2012, 02:50 AM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Marz
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My LLMD has this article laminated to show her patients.
I just ended her protocol today. 6 months on banderol/burbur, samento/parsley, serrapeptase and doxy.
Posts: 1297 | From USA | Registered: Dec 2002
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Kudzuslipper
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Marz, thanks for the link... Great article. My llmd has been suggesting Samento and banderol... Do these two work on their own... Or do you really need to do the whole Cowden protocol?
Now that I am reacting so negatively to flagyl, I may re-consider... But I am fearful of compliance with the whole protocol.
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canefan17
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posted
Describe "negatively" to flagyl
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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glm1111
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posted
Interesting that Dr. Sapi never mentions the devasting co-infection of filarial worms that she found in over 40% of the ticks that she dissected. She, along with other LLMDs are focusing ONLY on the bb.
I e-mailed her about 6 mos ago about this serious co-infection and why it isn't being addressed. Her reply was that the findings of Filarial Worms in ticks needs to be published in order to be recongnized.
REALLY??? WHAT ARE YOU WAITING FOR????
I feel that many who are chronically ill are carrying this deadly co-infection along with other parasites and keeping them sick.
I would have been dead by now if I hadn't accidentaly discovered that I was carrying this co-infection. After 4 yrs of oral abx incl 6 mos of IV Rocephin, I wasn't getting better.
I started antiparasitic herbs and the salt/c protocol and this is what came out of me. www.lymephotos.com VERY disaconcerting that this is being ignored.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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annxyzz
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Thank you Gael ! I agree ! If you see the worms and know they are a likely problem , why wait to suggest tile something is published ? Until there are numbers of people saying they improve with parasite treatment , who will publish or do a study ?
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
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Marz
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posted
kudzuslipers, I think it's just the banderol/samento plus doxy because that's what was used in the study.
And the serrapeptase. Plus the parsley and burbur for detox.
Still much simpler than the complete protocol on the nutramedix site.
Posts: 1297 | From USA | Registered: Dec 2002
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Kudzuslipper
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posted
Depression Cane.
Posts: 1728 | From USA | Registered: May 2011
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lpkayak
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posted
i like eva and i am greatful for her work
Bb complex is very complicated and any good research we get is important
i know parasites are a problem and many other things are too: sugar, not enough rest, alcohol, etc etc etc
i'm glad eva is staying focussed and doing good science
i hope someone soon picks up the parasite problem but one person cant do it all
i especially liked reading this:
The other very important fact needs to be considered for an effective treatment for Borrelia infection: this bacterium typically has a life span ranging from several weeks to six to eight months; therefore, it may take six to eight months for even one generation of Borrelia to become exposed to the antimicrobial for elimination..16 Since the herbal extracts like Samento are reported to be nontoxic, they can be safely taken daily for the long period of time necessary to thoroughly eradicate Borrelia from an infected body.17 In summary, our study has provided in vitro research data on a novel treatment approach using herbal antimicrobial agents to efficiently eradicate B. burgdorferi, the Lyme disease bacterium.
i have not been able to take samento - it makes me very sick but not in a herx way. buhner sayd ppl on reflux meds cannot take samento. i cant seem to get off my omneprazole altho i have really tried.
i suspected my doxy use would come back to haunt me. i kinda knew it was chasing them into cyst. but its so hard to stop something that gives you one mor day to feel better.
i wish i was organized enough to contact eva ans ask what would be a good substitute for the samneto...or if there is a way someone on reflux meds can take it safely.
i enjoyed my talks with her and alan macdonald at the seminars i went to in nh. if anyone gets a chance to talk with her please ask my question!
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Rumigirl
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lpkayak, ask Nutramedix that question about what to substitute for Samento.
Others: for heaven's sake, don't bash Eva!! She is our best hope here! She works really hard and has gone out on a limb for all of us.
This study, if I remember correctly, was done before she did the work showing the filarial worms. Plus, she can only do so much, and has to follow accepted scientific protocol for what she says and publishes.
She has a job to keep at the university, and it is not easy for her to juggle that, considering the administration could care less about her research. So don't blame her.
Posts: 3770 | From around | Registered: Mar 2008
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annxyzz
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No one is bashing her . She has ger heart in the right place and is an ally certainly . It is perplexing nonetheless that she would make statements that downplay parasite issue - or that she would not make it a focus after declaring doctors in Europe were having impressive results with ivermectin and doxycylcline .
There have been many who have used samento but I can not personally say I have read many rave reviews for it . I used it myself and it was no cure for me , but neither was doxyclne, minocycline, or bactrim .
I am now taking ivermectin / praziquantel ( safe guard vet product ) . I am herxing as I did when I first started doxycycline. Who could figure that a parasite med could cause such a profound reaction ? Incidentally , this combo is EXACTLY what the World Health Org has used around the world for filaria infections and has a good safety profile.
Nothing about this illness ever makes sense . I can personally only hope that collectively we can make progress sharing what we individually discover . May God help us !
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
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glm1111
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Not blaming her for anything really. Just don't understand what the problem is with anyone (including the group at Columbia) who makes NO mention about parasites, especially when Burgdorfer found adult filarial worms is some of the ticks he dissected as well, and as an ASIDE found spirochetes.
Hmmm, could be that after all this time everyone jumped all over bb, and made such a big deal about it as the main cause of Lyme (raised money on this platform)that it might not look politically correct to come out with a MAJOR parasite connection.
I am sure I will get some flack for saying this, but I am sick of seeing people so chronically ill and not getting better with yrs of taking abx.
Dr. K. says that bb is not that big of a problem to get rid of once the parasites are killed off, and he thinks most everyone has them.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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annxyzz
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There were THIRTY DIFFERENT STRAINS of filaria found in one tick by Burgdorfer .
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
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glm1111
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OMG annx...I didn't know that!!!!! Can you somehow post that info here?? Time people wake up. The suffering going on here is ridiculous!
Knowledge is power, and if kept in the dark about how to effectively treat this disease, people will continue to treat for yrs without results because they are not being given the right treatment.
Gael.
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
got a couple of questions about this 1. Do these herbals mentioned cross the BBB? will they work for neuro lyme?
2. what is the treatment for these parasites you guys are talking about?
Posts: 574 | From Out there somewhere | Registered: Jul 2010
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CD57
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posted
i agree re not waiting to publish before making a statement.....that should be out there more.
Also South American and I think other docs have used Ivermectin for treating Lyme....what if they are really treating worms? There are blogs on this.
We really have to be responsible for our own health and do our own research. You can't rely on your LLMD for everything -- they have too many patients and are overwhelmed. I've found I need to bring ideas to the table and then they agree or not.
Annyzz......is this SafeGuard pet med ok for you to take? Can you get a human version of this?
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lpkayak
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i used to feel this way back when dr fallon was doing that big study:
"i agree re not waiting to publish before making a statement"
but what happens is stuff is taken out of context and we are made to look like fools and they call our llmds rogue...it can get very messy
very political
it is important for our docs and researchers to be excellent and professional
this site and others like it can have the conversation and get the word out...but when a professional says something it really has to be done well or it comes back to bite us...
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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glm1111
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posted
I hear ya IP, however, the information about Filarial Worms being found in the ticks Burgdorfer dissected was as public as the finding of BB in the ticks way back in the 70's or 80's when the original ticks were dissected.
The filarial worms were the FIRST thing he found and it seems he stumbled upon the spirochetes as an aside as I mentioned above. For the life of me, I can't understand why supposed intelligent acedemia would completely ignore this finding.
It just does'nt make sense to me. It's like finding a gun and a knife at a murder scene, and tossing one of the weapons aside.
I keep harping on this because it is of the utmost importance that this infection should be treated, especially in people not responding to abx and who are chronically ill. Why am I among the few that is upset about this???
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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lpkayak
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gael-i hear what you are saying. the whole thing is a mess. there are so many variables when you include bugs, genes, medical history,different strains, patient compliance etc etc etc
and that doesnt include the pressures from ama, drug companies etc etc
A HUGE MESS and one way or the other i think money is at the root of our suffering
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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lpkayak
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posted
ps
I LOVE EVA!!!!!
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Tammy N.
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posted
Gael - To answer your question -- Why am I among the few that is upset about this??? I understand you completely. For some reason, talk of parasites often falls on deaf ears, within the medical community and within the patient groups. I don't understand it myself. This can be a game changer for so many. Yet it seems to be one of the most overlooked areas to treat. Very upsetting.
P.S. I am not saying Eva Sapi is deaf to this, btw. Not at all. I am just speaking in general terms from my own observations.
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glm1111
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quote:Originally posted by lpkayak: gael-i hear what you are saying. the whole thing is a mess. there are so many variables when you include bugs, genes, medical history,different strains, patient compliance etc etc etc
and that doesnt include the pressures from ama, drug companies etc etc
Ip, I AGREE with this statement....how disturbing
A HUGE MESS and one way or the other i think money is at the root of our suffering
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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glm1111
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posted
So VERY sad, when human suffering takes a back seat to the almighty dollar!! Not a pretty picture.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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annxyzz
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posted
CD 57 : The safeguard is simply the combination of ivermectin and praziquantel in a vet preparation . The drugs are the same . So far no side effects at dosing every other day . These 2 drugs are given together in other countries for filaria routinely . It is my experiment personally because ABX did not help enough .
I had a strong reaction to ivermectin . When I tried the iver/ prazi combo it was doubled literally . I know it is killing something as die off is intense . Will I get better ? Who knows, but the reaction is pretty stunning given I expected nothing .
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
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Razzle
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posted
I have to wonder if antiparasitics like Ivermectin or Alinia kill Lyme cysts too...and perhaps even more effectively than flagyl/tindamax... This is just me thinking out loud, though...
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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glm1111
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According to Lyme strategies, salt/c does kill bb and the cyst form. Salt puts parasites into osmostic shock (dehydrates them)Think of pouring salt on an earth worm. It shrivels up.
I think antiparasitics whether herbal or pharma is KEY in putting this disease into remission. Perhaps antiparasitics, abx and antifungals are an effective combo,
Gael
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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annxyzz
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Parasites can not be dismissed because : -filaria were found in first discovered ticks and still are found -lungworm is found in CFS and lyme patients -other lyme CFS patients are posting at multiple health sites with positive results for strongyloids , ascaris , hookworm, roundworm . - Add to that the discovery of FL 1953 protozoa so many test positive for with lyme CFS
The notion that they are only an issue for third world countries is bunk . That may be the number one reason sooooooo many CFS / Lyme patients remain chronically ill with these "mysterious illnesses " . SADLY , parasites are not on the radar for many researchers. That is why we must either be our own advocates sometimes make choices to experiment . CFS / Lyme are save yourself conditions.
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
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Tincup
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posted
Doing research on filarial worms, elephantiasis, etc. Saw this post come up on Google. Thought I'd offer a response now in the event others are having this same problem.
glm said.. "Interesting that Dr. Sapi never mentions the devasting co-infection of filarial worms that she found in over 40% of the ticks that she dissected. She, along with other LLMDs are focusing ONLY on the bb."
AND, glm said... "I keep harping on this because it is of the utmost importance that this infection should be treated, especially in people not responding to abx and who are chronically ill. Why am I among the few that is upset about this???"
AND, glm said... "Hmmm, could be that after all this time everyone jumped all over bb, and made such a big deal about it as the main cause of Lyme (raised money on this platform)that it might not look politically correct to come out with a MAJOR parasite connection."
Other similar comments were posted, just quoting the main points, not picking on glm.
1st, Dr. Sapi is not a LLMD or even a medical doctor. She can't treat patients or recommend treatment protocols (ethically or legally).
She must stay "in her field" when she publishes. Lyme is her "research field". Worms are simply an additional finding that she can and did mention.
Someone must now take the ball and research and publish on the worms, but not many medical doctors in practice are doing this and the CDC/NIH funding isn't being distributed to those who would do this kind of research. It is going to the IDSA idiots instead.
In a professional capacity Eva Sapi can't tell doctors or anyone else how to treat something medically, especially when it is not supported in the literature already.
Same with Dr. Burgdorferi. He is not a medical doctor. He happened to find the spirochetes and reported it, then the info was given to Bumsteere to investigate in the community and it's all been downhill ever since.
From Dr. Eva Sapi's bio...
Eva Sapi Ph.D. is a Professor and Department Chair at the Department of Biology and Environmental Science where she teaches undergraduate and graduate biology courses and carries out Lyme disease research with her graduate students.
Her research interest is to investigate the different forms of Borrelia burgdorferi for the better understanding how Borrelia can hide from the immune system as well as from antimicrobial therapies.
Her recent research shows that Borrelia burgdorferi is capable forming a protective layer around itself ? called biofilm ? which could render it to be very resistant to antibiotics and provide a logical explanation as to why extensive antibiotic treatment for patients with a tick-bite history could fail.
The goal of her research group is to fully characterize this novel form and to identify novel antibacterial agents that are effective in killing all forms of Borrelia burgdorferi.
```````````````````````````````````````
So, complaining about Eva Sapi not doing more or doing what any random individual not even in that field thinks she should be doing is unfair.
It's like saying the painter I contracted with came and painted the bedroom today, but I'm mad at him because he didn't fix the leaky pipe under the kitchen sink too.
Dr. Sapi excels in her field and should be given a lot of credit for all that she does, especially considering all of the beatings she takes for doing this work for us when she could easily study something totally different like the algae in a scallops diet or the diseases killing trees in the western USA.
From what I understand, they don't complain as much.
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