posted
After reading several of the posts and other blogs I am confused.
Iv'e read that antibiotics do not kill all the spirochetes especially across brain barrier.
IS that true? If so why are they standard treatment verses essential oils or herbs?
Also, I understand that people can have coinfections with Lyme, but if a person wasn't sick before exposure to Lyme, why test and treat for everything besides coinfections under the sun?
The tests in themselves are not cheap.
Does anyone ever treat just the spirochetes?
I'm not trying to be negative, I just don't quite understand.
Thanks a bunch.
Posts: 47 | From wichita, kansas | Registered: Feb 2015
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
First, it's never just antibiotics that kill late stage lyme. It's a multi disciplined approach involving anywhere from 5 to 50 lifestyle changes, medicines, herbs, excercise, diet, psychiatric care/release, etc....
Second, I can only say that after being here for 3 yrs. Also being head of a support group in NE Ohio, I have seen very few success stories when it comes to treatment involving late stage lyme and antibiotic treatment.
That's just me. I have dozens of friends w/ lyme & very few get better on IV or oral antibiotics.
That said, the ONLY ones that do get better are 100% compliant. They eat right, they take their meds, they use weights, they follow the basics.
I believe that fostering a healthy body, gut is just as important as antibiotics if not more from what I've witnessed.
This is only me. Others may have different experiences. I had a PICC with many IV antibiotics for almost 2 yrs & followed Dr. B's protocol to the smallest detail. I got minimal results. BUT antibiotics reversed a downward spiral and allowed me to walk again so I believe their absolutely is a place. The length of using them can be debated.
canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
Though abxs haven't been a long term soluton for me per se they have saved my life a few times and have kept me out of some very dark times.
I'm grateful for western medicine for helping keep me afloat but in the long run I have to find a way to get immune system back on track (way beyond just using some herbs).
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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posted
I think we're all very individual when it comes to what works.
Many do an abx combo to hit the two main forms of the bacteria - the spirochetal bacteria and their cyst form.
I believe antibiotics do treat the brain, since the brain recovers after treatment. You can see that on before and after treatment SPECT scans.
Surprisingly for me, oral clindamycin 500mg a couple times a day took all fibromyalgia pain to zero for five years. I was very pleased about that. Never got C diff. It was bacteriostatic, not cidal - kept the infection at bay but didn't outright kill it.
Then it stopped working and now I take capsules of turmeric. I am allergic to most antibiotics. Many people can't take them and they take herbs and anti-inflams.
I notice that even though the clindamycin stopped working for the Lyme, it is still effective for anything else I try it for. I was curious about what would happen if I tried it for other uses. Thank goodness it still works. Good argument to remember when people say say we will just become antibiotic resistant.
Re the co-infections, I always suggest that google symptoms and see whether they think they match any of the main co-infections.
If you qualify for low income, www.lymetap.com will cover 75% of the cost of IGeneX lab tests.
Posts: 13116 | From San Francisco | Registered: May 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Antibiotics, alone, are NOT standard treatment with ILADS educated LLMD or LL ND. Never.
However, with IDSA, a single antibiotic IS.
The IDSA protocol is NOT a good one. ILADS is much more sound. See:
Two Standards of Care Revisited: Should Lyme Patients Have A Choice? 2015, Johnson ------------------
Antibiotics are just one classification of drugs. OTHER drugs are also required along with antibiotics when using the allopathic approach.
Antibiotics, alone, are NEVER good idea and antibiotics, alone, can CAUSE chronic lyme because they are not meant to be alone. Antibiotics do not affect all the forms of lyme. Not by a long shot. Every LLMD knows this - or they are simply not a LLMD.
And lyme NEVER travels alone. Other infections also required consideration from a full range of Rx, antibiotics may not even work at all for some of the other tick-borne or chronic stealth infections.
There are various Rx combination / rotations to be considered.
As for a doctor, of course one who is ILADS "educated" and beyond in all aspects of tick borne disease, the best, brightest, most well educated in the field, when at all possible.
And specific liver, kidney, adrenal and neuro support nutrients.
Rest, the right kind of movements, nutrition, etc. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Essential, absolutely essential to go along with any Rx protocol:
LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- If other paths are explored / employed, it's still vital to have an ILADS educated LL ND to guide, so they know the science of lyme, TBD, etc.
When considering herbal / nutritional / adjunct methods, because lyme is so very complex & unique, as are possible coinfections:
if at all possible - because each person & each case is different - it's best to consult with an ILADS-educated LL ND (lyme literate naturopathic doctor) (or similar) who has completed four years of post-graduate medical education in the field of herbal and nutritional medicine -
- and someone who is current with ILADS' research & presentations, past and present, and has completed the ILADS Physician Training Program (see: www.ilads.org )
so they really know all they can about the science of lyme . . . how lyme (& other TBD) act and what we can do about that in various ways.
Many LL NDs incorporate antibiotics (depending upon the licensing laws in their state). Some LLMDs and LL NDs have good working relationships.
When possible, it's great to have both a LLMD and LL ND and even better when they have a long-standing professional relationship.
Herbal Safety considerations & reference books; etc.
Links to many articles and books by holistic-minded LL doctors of various degrees who all have this basic approach in common:
Understanding of the importance of addressing the infection(s) fully head-on with specific measures from all corners of medicine;
knowing which supplements have direct impact, which are only support and which are both.
You can compare and contrast many approaches with links to articles, books, methods . . .
BODY WORK methods / links (and why anyone who works on your spine MUST be LL to the degree they at least know to never suddenly twist neck or spine. Never. Ever. And that we should never be advised to do neck / head / shoulder stands.) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
It's a pot shot. Abx work for some people and for others they don't (various reasons). No way to know this until people try them though. Abx do cross the bbb but it takes time.
As far as co infections, it's good to test and hopefully get a positive test, so it's worth doing. The majority of time patients actually do have the infections, but they never make it in the blood draw so the test shows negative but symptoms remain. So lyme docs treat the symptoms.
I wish that I never used abx, but then again if I hadn't who knows where I'd be today. I'm pretty sure I was on the way to ALS or parkinsons which IMO are lyme and company related.
Don't just focus on lyme. Everyone I know who has lyme has co infections (its a given). They pop up when you start treating.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Robin123...
I'm sure you've already considered that Clindamycin is a powerful anti-inflammatory, and that may have been the effect you were experiencing?
Particularly if turmeric had a similar effect?
Here's an article explaining the anti-inflammatory and immune modulating properties of antibiotics:
I suspect that in many chronic cases, it is possible that people erroneously attribute these effects to direct "bug killing" or "keeping bugs at bay" rather than the anti-inflammatory properties they possess, which could keep them on the drugs for years under the wrong assumption.
Since chronic Lyme is so good at suppressing immune function and evading antibiotics by going into protected forms and deep into tissues, in my opinion it is really time to shift more attention on specific methods and protocols to rebuild the immune system so it can do it's job against the bugs as it was meant to do...
Posts: 1876 | From Earth | Registered: Jul 2013
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I had undiagnosed lyme disease for at least 10 years before a smart doctor thought to test me for lyme. So, I was sick with this disease for at least 10 years before I started treating it.
Once I got to a doc who followed the Burrascano protocol, I was symptom-free in 8 months and finished with treatment in 13.
I had babesiosis and bartonella also. This was based on Igenex testing for coinfections. I wasn't tested or treated for coinfections until I got to my Burrascano-type doctor. Still, I got well.
I then sent at least 5 of my personal friends to lyme docs who followed Burrascano and they all got rid of their lyme disease and coinfections also.
That is why I believe in the Burrascano protocol. I have seen it work over and over again. It is the most successful lyme protocol on the planet. Doctors all over the world use it.
It is a 4-pronged approach:
1. antibiotics (at bactericidal dosages, and in combinations; not one at a time)
2. diet (to avoid yeast infection from antibiotics)
3. supplements (to replace what the lyme has stolen)
4. exercise (full-body light weightlifting for one continuous hour every other day)
All 4 prongs are necessary for recovery. The exercise boosts the immune system. This is essential so that you do not relapse when treatment ends. (Lyme and babesiosis compromise the immune system like AIDS. So, you must do things to restore it to normal.)
Many doctors treat lyme disease, but very FEW know enough to get rid of it for a person. You have to find one of those few.
(Also, please know that many fear treating properly due to the persecution that will come their way. You have to find a doc who is willing to treat you properly.)
My symptoms were bad and they included plenty of neurological symptoms and brain problems. Prior to treatment, I had 2 UBOs (unidentified bright objects) show up on a brain scan. These no longer show up, by the way.
It is now 10 years since I completed my treatment and I am still symptom-free. I take no meds or supplements to keep lyme away. I have the same life I had BEFORE lyme disease.
The doc is the key. Can't emphasize that enough.
Here are a few points from Dr. B's guidelines:
You must attack both the regular and cyst (or other) form of lyme simultaneously--requires at least 2 different antibiotics to do so.
You must test the patient for all co-infections and other physical ailments (thyroid, etc.) and treat everything the person has.
You must treat all co-infections the patient has (including babesiosis, bartonella, ehrlichia, mycoplasma, etc.) or the patient will not get well.
You must use Igenex for most of these tests--they are a tick-borne disease speciality lab in Calif.
You must use very high doses of antibiotics to kill the diseases (batericidal doses).
You must give the patient supplements, probiotics, herbs such as artimesinin if babesiosis is suspected, and require adherence to rules such as low carb diet, no alcohol, no smoking, no steroids if at all possible, rest, and exercise as the patient is able to do it.
You must treat at least 2 months after all symptoms have disappeared (if sick at least 1 year).
These are just a few of the important points you will see in the guidelines. If possible, you want a doc who does EVERYTHING Burrascano says to do. He treated lyme for over 25 years, and compiled what he learned so that other docs could benefit from it. He was the most successful lyme doctor on the planet. They came from every country in the world to be treated by him.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Catgirl
Frequent Contributor (5K+ posts)
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posted
quote:Originally posted by Phoiph: Robin123...
Since chronic Lyme is so good at suppressing immune function and evading antibiotics by going into protected forms and deep into tissues, in my opinion it is really time to shift more attention on specific methods and protocols to rebuild the immune system so it can do it's job against the bugs as it was meant to do...
I agree. :)
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
TF...
I appreciate this information, and acknowledge that many have found success with Dr. B's protocol, unfortunately, there are also many that simply cannot tolerate it, myself included.
I followed Dr. B's protocol closely for many, many months, but became more and more ill and toxic as time went on. I was told I was "herxing", but in reality, it was a continual worsening of symptoms, to the point that I became homebound for 5 years after that.
My body/organs/gut simply weren't capable of handling the accumulation of toxins and drugs over time, and, although I didn't think it was possible, I ended up much worse than before I started.
So, for the many people who cannot tolerate this kind of protocol, I just want to make the point that there are other methods of increasing immune function and becoming well (my case in point, via mild hyperbaric, diet, and graded exercise).
Posts: 1876 | From Earth | Registered: Jul 2013
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote:Originally posted by droid1226:
I believe that fostering a healthy body, gut is just as important as antibiotics...
. The more I study Lyme, the more I realize this.
I'm presently reading a book about healing cancer with methods that bring the body back into balance. From what I see, most of it applies to people with Lyme.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
ohdeer is the poster that owns this thread. She asked a number of questions including "why take antibiotics?"
That's why I posted what I did.
I hope folks focus on all of the questions she is asking and give her some answers.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Thank you one and all for your replies and thoughts.
It helps to know that antibiotics can cross the brain barrier and do their job on the spirochetes. Knowing that is very encouraging.
It is true that some people cannot tolerate some things others can. I am hoping I can tolerate the antibiotics once my gut problems are under control.
My own niece, not diagnosed for fifteen years, fears she could not tolerate the antibiotics and so is taking herbs for her Lyme. Although better, she is still not well yet.
However, I have an open mind to anything that might help but now understand the reason for the B. protocol.
From what my husband and I have read and from your comments here, it appears we have an very educated llmd.
He is following the B. guidelines as T.F. indicated that are so highly respected.
So, I will be compliant. I am not facing the challenge many of you faced as I will be just under a year when I commence antibiotics.
I can't believe how horrible a time so many of you have faced!
It is so kind of you all to help others by taking the time to answer questions we newbies have!
Thank you again, your various comments really helped!
Posts: 47 | From wichita, kansas | Registered: Feb 2015
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
Why take abx?
For my kids, being on IV combo abx for a year saved them from going further into the abyss. Was it a "cure?" Who knows? Was it helpful and necessary? Hell yes. They are functional! And that's my litmus test.
The right oral abx IMO are great early on-REALLY early on.
Posts: 1885 | From here | Registered: Jul 2012
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Late stage neuro lyme here. Many coinfections. Immune compromised. Endocrine issues. Mycotoxin issues.
I had lost the ability to speak, couldn't swallow food or drink without choking, forgot familiar places and names, falling a lot, couldn't use my hands much, etc. Antibiotics brought me back from that pit.
Cured me? No. Prevented me from going down the ALS to Death road? Yes.
I am of the personal opinion, if one has neurolyme and is facing ALS to Death, or MS to Death, then antibiotics are the fastest, harshest way to stop that trip.
However, a lot depends on coinfections and other health issues. And also I think some of us are so thoroughly infected, neither herbs nor antibiotics, nor other modalities will 'cure'. Maintain, yes, cure no.
Just my two cents.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
I was in a very bad health crisis when I finally got diagnosed and abx got me out of that hole. I would have died without them.
However, and I agree that each person is different and has their own path, abx were not the treatment that brought me to wellness. I could only get to a certain point with them. And I did all four things that TF mentions, though I switched #1 to non-abx. She is a great example of someone who got well with the Dr. B treatment.
I have way too much trouble detoxing though, and I think that's a big reason I needed something different so after a couple years of treatment with my LLMD, I changed to natural things. I still had to address all aspects of the disease. Lyme causes a lot more trouble than *just* infection.
After addressing everything, I am well. I don't do anything to address Lyme or keep it under control, I just don't have it anymore.
I do eat a good diet, exercise, get enough sleep, control stress, and balance work/play/rest, but I think all that is good practice for everyone, especially those of us over 50.
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