I've been seeing this doctor who I have a lot of faith will help me. I have yet to start treatment Bc we are awaiting to see some lab results first.
But I found out through some people about the Lyme research study at University of Florida. A social worker working for the study said they would cover all of the treatment.
That's huge since we all know how much treatment and doctor visits cost.
Has anyone participated in a study? Any thoughts on this? Has anyone heard of their program?
Thanks for hearing me out!
Posts: 113 | From Hollywood, Florida | Registered: Aug 2016
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Keebler
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- stefi,
Their definition of "cover treatment" really matters.
My heart sends you good vibes. I do not like to sound "down" on this as I recall when I first started out and the only way I could then get help was to look for a study.
Rather than my maybe "raining on your parade" or hopes, here, I hope detail here will make any research you do on this matter easier, starting you out with a good question list.
I never found a study that I was looking for early on - but then knew others with "CFS" who were in a study and it did not go well for them, at all because of the way most university / drug funded studies are set up.
Actually, one drug was very helpful in the study for CFS, about two decades ago. All in study were promised treatment for a certain time after the study ended. The Rx helped the group that got it and those in the placebo group suffered greatly - but thought they'd get the Rx later.
The Rx company broke that promise.
Now, that drug and that group was not set up for infection matters.
However, the key is that most control studies are not really good for those who are really ill with an infection if the infection is not adequately addressed in all manners required.
And studies are usually not set that way.
There are some "observational" studies yet they usually also have too strict parameters for someone with a complex infection / multiple infections.
Be absolutely certain - absolutely certain - that they are ILADS "educated" doctor who are working on this. They need to know as much as humanely possible about lyme at this point in time. Be sure they know the basics and the complexities.
This is not likely on the grounds of a university, however.
I would never participate in a control study where my course of treatment would be limited and where I might get zero actual treatment during trial.
Some Rx manufacturers have refused Rx to participants after the studies, breaking promises. A friend of mine had this heart breaking experience with a drug trial for a different issue. So the Rx company would need to be fully researched for this promise, too.
Also, all other tick borne infections that might be on board must be assessed and addressed. That's really hard in a study. Most studies do not end up having the patient's care in mind.
Most look only at one particular drug. Lyme cannot be treated with just one thing.
And no proper study can be done on a person who has lyme AND other tick borne infections if all the infections are not also considered.
Lastly, if a person has lyme and is in the study, it is unethical to enter that person in the study and have them denied of the treatment that would be best for them, for all matters on board. -
[ 09-11-2016, 03:49 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- Important to know: Who is funding the study? What names are connected with this? Then find out more about just who they are and what their body of work to date stands for.
Do you have a link to any detail?
What specific Rx being considered? How long?
IMO, any study should be endorsed by ILADS, the LDA, and LymeDisease.org -
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Keebler
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- I don't have time to look further but maybe others have. Contact your local and state lyme disease support groups, if they are ILADS "minded" -
and contact ILADS, too, they might know more about it. Ask if the researchers on the test are ILADS members (that would be a good thing).
itself, has some very good detail yet they are still operating under some very bad errors in thought / practices.
I do give them a gold star for recognized that lyme can be in various kinds of ticks but they stop short in expanding their awareness of the issues there.
It can take a quite a while for any patient to be able to know just which statements are so very wrong. There are at least four of five errors regarding the tick attachment time "required" to spread infection and the limited extent of Rx and length of treatment or how long lyme can last.
Glaring omissions in avoiding mention of other tick borne infections that should require assessment in anyone with lyme.
I could never feel comfortable - could never trust - to be in a study at a university where their own department of health held up such errors, where they get the most basic and important points all wrong.
The sources cited are the usual bunch of IDSA ID doctors who are so in the dark about lyme.
They could do with expanding their knowledge base to ILADS doctors as well. -
[ 09-11-2016, 02:26 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- Just one example of several errors they have on their site above regarding tick attachment time where they say a tick must be attached for a certain number of hours / days.
That is just not true. What those who really do know lyme have known for decades:
Lyme borreliosis: a review of data on transmission time after tick attachment
Michael J Cook - 2014 Dec 19
Independent researcher, Dorset, UK.
Excerpt:
. . . Mechanisms for early transmission of spirochetes have been proposed based on their presence in different organs of the tick.
Studies have found systemic infection and the presence of spirochetes in the tick salivary glands prior to feeding, which could result in cases of rapid transmission.
Also, there is evidence that spirochete transmission times and virulence depend upon the tick and Borrelia species.
These factors support anecdotal evidence that Borrelia infection can occur in humans within a short time after tick attachment. . . .
[Full article at link above] -
[ 09-11-2016, 03:12 PM: Message edited by: Keebler ]
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Keebler
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- Trying again, no success with search for any of these:
Florida "lyme research study"
Florida "lyme research" study
Florida, lyme, research, study
You say that you "found out through some people about the Lyme research study at University of Florida. A social worker working for the study said they would cover all of the treatment. . . ."
Go back to that person / "some people" and ask them for the specific place, LINK to detail.
Then you will have more to start looking at. -
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Keebler
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If there is anything of note going on in the US / World regarding lyme / TBD (tick borne disease) these top three groups will likely know about it - or know where else to look.
Contact: LDA [one of top patient advocacy / education organizations] -
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Keebler
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- A basic template - with the understanding that treatment is just never the same for everyone. It requires an individual approach with frequent changes of Rx, combinations and rotations.
Support methods, IMO, are absolutely required as well:
Probiotics for gut microbiome health; & nutrients to help protect the liver & kidneys and help them better serve you through treatment and with life's stresses. Adrenal support is also required
These are all included here, too.
Rx studies never can take support methods into account. One drawback of many. They also do not take rotation, combination therapies in account.
For the basics, keep in mind the thought process behind this - understanding of the science of lyme and other TBD:
by a leading ILADS LLMD - November 2013 -
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Keebler
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- Google search: Borrelia, study, Florida
Sometimes, the slightest change in term can yield different results. I still cannot find a current patient treatment study being set up in Florida, however, this led me to this absolutely excellent piece of work from three years ago.
Not a treatment study, though this is groundbreaking in so many ways to prove the IDSA has been so very wrong about a lot of things:
Int J Med Sci 2013; 10(7):915-931. doi:10.7150/ijms.6273
Research Paper
Lyme Borreliosis in Human Patients in Florida and Georgia, USA - 2013
Kerry L. Clark1, , Brian Leydet1,2, Shirley Hartman3
1. Department of Public Health, University of North Florida, 1 UNF Drive, Jacksonville, Florida USA 32224;
2. Current address: Department of Pathobiological Sciences, Louisiana State University, Baton Rouge, Louisiana USA 70803;
3. Mandarin Wellness Center, Jacksonville, Florida, USA 32257.
Abstract:
The aim of this study was to determine the cause of illness in several human patients residing in Florida and Georgia, USA, with suspected Lyme disease based upon EM-like skin lesions and/or symptoms consistent with early localized or late disseminated Lyme borreliosis.
Using polymerase chain reaction (PCR) assays developed specifically for Lyme group Borrelia spp., followed by DNA sequencing for confirmation,
we identified Borrelia burgdorferi sensu lato DNA in samples of blood and skin and also in lone star ticks (Amblyomma americanum) removed from several patients who either live in or were exposed to ticks in Florida or Georgia.
This is the first report to present combined PCR and DNA sequence evidence of infection with Lyme Borrelia spp. in human patients in the southern U.S., and to demonstrate that several B. burgdorferi sensu lato species may be associated with Lyme disease-like signs and symptoms in southern states.
Based on the findings of this study, we suggest that human Lyme borreliosis occurs in Florida and Georgia, and that some cases of Lyme-like illness referred to as southern tick associated rash illness (STARI) in the southern U.S. may be attributable to previously undetected B. burgdorferi sensu lato infections.
Article excerpts:
Table 1
Demographic and clinical characteristics of study patients, and Borrelia burgdorferi sensu lato detected in attached ticks.
Table 2
Results for Lyme enzyme immunoassay (EIA) and Western Blot (WB) antibody tests, BSK spirochete culture, and Borrelia burgdorferi sensu lato PCR test results, and clinical diagnoses of study patients.
[Full articles at links above]
Of note, all authors might be superb but I'm so out of steam that I just looked at the first author listed above
He received a Lyme Disease Association Grant Effective dates: Summer 2009 through Spring 2010. The LDA is an excellent organization.
His research resume is very impressive. If he is connected with any study you might come across, he sure looks like an excellent researcher to have on any team [although he is not the kind of doctor who does patient care / treatment, he is a researcher].
Professor • Epidemiology & Environmental Health Public Health • Brooks College of Health - University of North Florida -
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Keebler
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- Please do search this out further. My basic searches may not have found it but it may be rather quiet at this point. You might contact the office manager of the researcher above to see if they know of anything. Sure would seem they might.
Others, hopefully know something to share with you. I do hope that it may be something that could work out - as long as all the considerations have been checked off.
It may seem like I'm opposed to a study set up with a new way of looking at this. I am not. It's just that I want to see all those working with lyme to know first all about it and not ignore basic facts as has been done so often. A "new" way of looking at it cannot include ignorance of its very nature.
Still, with the right minds on board, it may well be that some new way of seeing, some new way of thinking might be just the ticket.
Please come back and post if you find out, okay?
You never know what kind of study this might be that you heard of until you get more details. I really wish I could have found it. I love finding things but am all out of steam so I'll give your wagon a lucky push and offer hope that some links here will connect you. -
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Keebler
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- Just in case you ever come across a patient study for lyme vaccine - that is one I would never suggest for anyone, ever. There is a lot of dark history to one that was on the market few years ago that harmed a lot of people
and the way one soon to hit market is being designed poses many questions, too.
Just to have on hand, important to know about any vaccine, too:
I could not find it but I don't "do" Facebook so could not get rid of a big box covering the screen. This is from the Google search page clip:
The Lyme Action Network is working to develop "What needs to happen NEXT to... ... Florida Lyme Disease Association .... Call for participants in a study on the genetics of Lyme disease .... In fact, Dr. Christina Sanchez, a... molecular biologist at Compultense University in Madrid Spain, has completed extensive research ...
Call for participants in a study on the genetics of Lyme disease
Posted by VH on June 1, 2016
The BCA clinic and BCA Lab in Augsbug, Germany, as well as, Dr. Leona Gilbert’s Research Team at the University of Jyväskylä, Finland
are conducting a study into the role of genetics in Lyme disease symptoms.
They are looking for participants in the study. Caudwell Lyme Disease charity welcomes this study and urges
*** all Lyme disease patients in the UK or further afield ***
to offer their participation if they fit the selection criteria.
Gene expression in chronic Lyme patients, a pilot study
. . . If you fulfill all requirements [see details at link] and would like to take part in this study, please contact us using the following e-mail address:
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/
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