Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
My LLMD gave me three months of Bactrim in our first visit. He also prescribed IP6, Transfer Factor and Lauricidin.
I think it's because I have very high viral titers and he wants to get my immunity up.
I'm a little hesitant though. I haven't had a bad reaction to Bactrim ( in fact I feel better than I did a few days ago) but something is bothering me.
There is a lady who runs a site called owndoc. Her name is Sarah Vaughter.
She says that there is no other effective treatment for Lyme but Doxy or Mino. She actually says that you have to take either one of these for a very long time in pretty high amounts, otherwise you will continue to deteriorate.
She also says there is no such thing as a Lyme neurotoxin.
She also has no belief whatsoever in herbals because they don't cross the BBB.
So I'm sitting here taking my Bactrim and Lauricidin thinking that if I'm not taking minocycline my brain is going to rot out of my head.
Does anyone have any opinion about this?
She seems pretty sure of what she's saying.
Posts: 2057 | From Florida | Registered: Feb 2015
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- She is NOT an expert. Over the years, while they have some things of relative interest and worth - there have been many more matters on their site that have been very misleading and some just plain wrong.
Here's where to look when you want the best detail:
WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation for lyme, OTHER tick-borne diseases, and other chronic stealth infections - and all that goes along for the ride.
Medical "models" explained here, as to differences in the ISDA & ILADS models of assessment & treatment - and exactly why it is so very important to know the differences. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Thanks...This is part of why Lyme is so hard to navigate.
This woman says she's spent "thousands of hours" researching and talking to researchers.
Her description of what "lyme" has been like for her is really terrifying, since she says she has to have unbroken, high dose doxy in order not to "deteriorate"
She argues incessantly with her commenters and won't accept any other ideas about treatment but ONE - nonstop, high dose tetracyclines.
If it's true we're all headed to hell.
Posts: 2057 | From Florida | Registered: Feb 2015
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Don't waste good energy there. Yes, there's much to be very concerned about and there is no way this is easy. But with such glaring errors in the process of that site, it's not going to serve you.
The ILADS Annual Scientific Conference was held October 16-18, 2015 in Ft. Lauderdale, FL -
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
book & website . . . with a new edition of the book due out early 2016. He is also a leading ILADS LLMD.
and,
to learn more about lyme and coinfections, books by Harrod Buhner. He has some exceptionally detained insight. Whether you "do" herbs or not, his books are so essential to understanding these infections and our bodies. -
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
If there were ONE solution to Lyme, then everyone would be doing it. It would be very nice if it was that easy.
Some people will insist that you HAVE to do x, y, or z to get well. They all mean well, but we all likely have different combos of bugs and strains and we all have different bodies, histories and immune systems. There isn't a one size fits all approach with this disease.
And beyond that, taking one med doesn't address the three forms of spirochetes, nor does it address any of the co-infections that most of us have.
Posts: 1737 | From Virginia | Registered: Aug 2011
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bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
I just got rxd doxy and tini. Ketokonazole and ivermectin. .havent started yet..doing iv h2o2, herbs and bvt ..i had crazy reaction to bactrim short course has been banned in uk...i did find out i had lyme etc so not all bad, im wiggin on where to go from here too
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
I just watched the Dr H video. Made me wish he was my doctor .
Well, I'm glad you all and Dr. H disagree with Own Doc.
She wrote an article on there that says that co-infection symptoms are really Lyme symptoms. In other words co-infections aren't real.
I don't think she should be publishing these things if they're just going to scare the hell out of people.
I've been through too much already and I'm just getting started!
Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Bluelyme I did know that bactrim has been banned in UK. But for people who are not sensitive, it's prescribed in very long term courses for HIV/AIDS since the immune system is so low in those people; and even for acne.
Good news is, according to Sarah Vaughter you're taking exactly the right medication Posts: 2057 | From Florida | Registered: Feb 2015
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- NEVER use Sarah Vaughter as an expert. Please.
Jordana,
You say: " . . . don't think she should be publishing these things if they're just going to scare the hell out of people. . . . " (end quote)
First, lyme can scare the hell out of people. I'd hate to see any information squelched just because someone thought they were protecting me from being scared.
But, it's taken a while to learn now to sort things out. Education is what shines a light to dispel fear.
But, back to "they shouldn't say such things" approach:
First amendment. It's simply freedom of speech, of expression.
Accuracy has nothing to do with that, actually. Most do strive for that, I do think but it's down to there being various interpretations and beliefs. And we NEED to have that so that all thoughts can be considered.
Even in some theories that have many holes, there can be spark of light to consider. Still, as we hold dear the right to express our thoughts, we must also give space to others.
We also have the freedom to study various sources to determine just who are the experts and who are not. We have the freedom to spend our time where it is most advantageous to our goals.
We have the ability to think, to discern. We need to use that.
She & her husband have had that site for many years. Just pass on by. there are many things on the web that are not true, some with bits and pieces or truths mixed in with lies . . . some just biased opinions . . .
and if you are going to be able to keep your sanity during all this, it's really important not to dwell on those who don't know what they are talking about. Your energy bank can get overdrawn very fast.
The links for you above are a good start to the foundations. Stick with the good foundation pieces.
Best: have the most well educated and wise doctor you can go guide you.
No patient should have to learn all this for themselves. But many of us do. Even with a good LL doctor, much study is required.
Yet no one has all the answers, this is a journey of discovery that will unfold over time, a bit differently for each person.
When possible, find the best doctor to set the protocol and then put your efforts on the self care part of healthful living. Where possible, it's good to get "out of the books" and be in life. -
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Funny thing is, I've been going to specialists for a year, nearly two specialist appointments a month. I've seen an MS specialist who took one look at me and said -- I don't know what's wrong with you.
Ended up in the hospital getting my gallbladder out and for all that time prior no doctor could even deduce that it was infected.
I saw an infectious disease doctor who said I had post viral syndrome and there was nothing he could do.
But when I finally had my Lyme stuff in hand and told my PCP I was going to a Lyme specialist, she told me I should go back to the ID doc "because those doctors who don't take insurance are all quacks."
So -- you've got trained medical people who can't or won't diagnose Lyme, but when it's suggested there's someone outside of their wheelhouse who CAN -- well, then you're doing something dangerous.
That makes it doubly hard to know who to trust. Until I found and saw the LLMD I thought I was going to have to do this on my own and read everything *everybody* said.
The thing about that particular person is that the way she writes she makes herself *sound* like an authority. She's basically telling people not to listen to anyone else but her, not even Lyme docs, a couple of whom she's criticized pretty seriously on her site.
Thanks for the good reading material. I'm already dependent on this site for good info Posts: 2057 | From Florida | Registered: Feb 2015
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- To help us understand why others are so sure of what they say when it's just not at all the experience we've had:
Now, we all know someone who seemed to do just fine with a short course of doxycycine. That is their truth. And they may have no need or desire to then look beyond that.
And, apparently, these are the ones that the IDSA doctors must limit their practices to (&/or not know that many of their patients likely go elsewhere when continuing symptoms are ignored).
The STRAIN of borrelia makes a huge difference.
What many people don't know is that 10 strains of lyme cause only the lyme rash. They don't cause any lyme disease at all.
So, that's why a person can get a rash and just take a little doxy and be fine. They actually would have been fine even without the doxy.
On the flip side, if lyme is present just doxycycline can CAUSE lyme to become chronic as doxy pushes spirochetes to go into the cyst form.
Combination treatment - with very specific Rx to address cyst form as well, is vital to prevent that. Antibiotics do not do this.
Back to the rash but no symptoms: as mentioned above, that may be true for NOW but it can change. Still, maybe not.
Here is an excerpt from the book "Cure Unknown" by Pam Weintraub in which she talks about this aspect of lyme disease:
p. 342 tells how Ben Luft, infectious disease specialist and Daniel Dykhuizen, evolutionary biologist, working together at Stony Brook went out into the field collecting ticks and analyzing Borrelia.
A few years later, they had a graduate student travel the Eastern seaboard as far north as New Hampshire and south through the Carolinas collecting ticks infected with B. burgdorferi spirochetes.
p.343 “The Borrelia were duly isolated and compared for differences in their genes.
Eventually the researchers focused on twenty strains, each with a different version of the changeable OspC. Working with those twenty strains, Luft learned that six didn’t infect humans and ten caused only a rash.
Only four of the twenty could leave the skin to invade other tissue like the heart and joints or the brain.
The most virulent of the strains turned out to be the prototypical B31, the version of B. burgdorferi … ultimately isolated by Burgdorfer and Barbour at the Rocky Mountain labs in 1981.
The implications are profound.
One of the most important is that if just four strains of the twenty cause disseminated infection, then the roster of rash-based studies on the treatment of early Lyme disease, conducted from the 1980s to the present, would have to be reassessed.
Take a moment to ponder the simple math: It would be impossible to accept results based on the assumption that 100 percent of Lyme rashes can cause invasive disease when a significant percent cannot.
Some of the classic studies claim very high cure rates for early infection; yet if the causative strain were of the rash-only variety, then even orange juice would be a “cure.”
Are recommended treatment protocols truly curing most of those with early, invasive borreliosis? Or has noise from rash-only strains obscured less rosy results?” (p. 344)
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