Realities of Antibiotics for Lyme Disease

[VaBreeze]

The Townsend Letter (2007)
Realities of Antibiotics for Lyme Disease
by Dr. David A. Jernigan

"In one year, in the United States alone, over three million pounds of pure antibiotics are used on humans. This is enough antibiotics to give every man, woman, and child in the US ten teaspoons of pure antibiotics per year. Now, consider that many Lyme disease sufferers have been on at least two different antibiotics at a time, at an average dosage of 600 mg each per day. If one has been on antibiotics at this dosage for one year, this means that a full pound of pure antibiotics has been consumed. My question is, how many more pounds of antibiotics will it take, especially when research has shown that at times bacteria are known to be able to mutate around an antibiotic within the first 20 minutes of taking the first pill? It the bacteria have already mutated around the antibiotic, then switching to an intravenous form of the antibiotic, which is a favorite tactic, will do little good."

http://www.townsendletter.com/April2007/antibioticlyme0407.htm

[PlateletGal]

Speaking of vitamin D dysregulation and Dr. Marshall.... you may want to read gina's new post about her vitamin D levels:

http://www.medhelp.org/posts/show/745381

[PlateletGal]

Although Dr. Marshall is not a medical doctor... he does have physicians and R.N.'s who are successfully or who have successfully been treated with his protocol. You have to give the man credit... he saved his own life with his protocol and his protocol is saving people who have sarcoidosis. This apparently is a cure for sarcoidosis. And Dr. Marshall discovered Benicar. Dr. Paul Cheney said this about Dr. Marshall:

"My hat is off to Trevor Marshall for identifying that the Renin Angiotensin System (RAS) is a key element in the pathology of this disease and pointing out that it acts locally as well as systemically."

[PlateletGal]

You are right. Trevor Marshall, Ph.D. (who is not a medical doctor) believes that vitamin D deficiency may be a symptom of a disease and that supplements may make it worse. Dr. Nancy Klimas, an internationally respected CFIDS researcher and clinician, also questions whether or not a low vitamin D level is a consequence of illness.

Most of the people who are on the Marshall Protocol have been sick for many years. Many of them have said that Dr. Marshall's research on vitamin D makes sense. These people have been on vitamin D supplements for numerous years and yet they continue to have vitamin D dysregulation (low vitamin D ---- higher vitamin D 1,25 hydroxy). I tend to agree with these people based on my own personal experiences. I've taken heat for my position, but that's fine.... I'm only telling people my story.

I know there are some people who are on the MP and still supplement with vitamin D. Although I'm no longer doing the MP, I do not supplement.. but I am now able to tolerate some sunlight (although not too much) and I do eat some foods with vitamin D.

The only thing I can tell people is to do your research.... and do what you think is best for your body. I listen to my body, read the research and take it from there.


sources:

http://www.sciencedaily.com/releases/2008/01/080125223302.htm

http://www.immunesupport.com/library/showarticle.cfm?id=8646&T=CFIDS_FM&B1=EM013008C


Glad you guys are here. I was bitten by a tick shortly after I started the MP and so I could have lyme. Thank goodness I was already being treated as if I had lyme disease. Dr. OZ also said that ticks carry viruses as well. If you read the old medical books... they say the root of disease is parasites, fungal & pathogens. I'm starting more and more to believe it.

[patsy10]

There is something about the MP that confuses me.  Maybe you could enlighten me.  I have read over and over again about vitamin D and the need for people to supplement this, especially people with neurological problems.  I believe the MP does not recommend D.  Am I correct?  If so can you tell me why?

[patsy10]

I can tell you I saw now improvement whatsoever until 4 months into treatment.

[wonko]

Yes, my LLMD told me that he would treat until symptoms are gone.  But then, sometimes I wonder if/when that will happen!

I don't recall a bit or rash, so by your definition, I couldn't have spotted this early.  I trace when my Lyme sympomts began to spring '07, after a round of other infections (bronchitis and others, for which I was on a short course of antibiotics).  I didn't "worry" about my symptoms until the fall of '07, and didn't see a doctor about them until Jan '08.  I was diagnosed by an LLMD in late Nov. '08.  

I do think the Lyme is in my CNS, based on both symptoms and MRI abnormalities.  Without the bite or rash, I can't say for sure how long I've had it.  I do suspect that I had a dormant infection that was triggered into the spotlight, but I'll never really know I guess!

PlateletGal is right, there are plenty of success stories.  I'm slow in my reading and still wading through some books, but will look into Jernigan's.  Also, I think we all have a different inate ability to fight these things, and some people respond to treatment better than others.  I'm sure Lyme patients all also have our own unique "cocktail" of Lyme and co-infections.

I suppose I'm looking for a good balance of optimism and reality.  I've only been in treatment since Dec., and I don't plan on quitting yet, but I want to be realistic in what to expect and aware of the limits.

Thanks, and thanks for linking this post in the Lyme forum!

[PlateletGal]

I know the Marshall Protocol has had success with people who have had chronic lyme disease. And, the Benicar works with the low-dose antibiotics and is able to kill the bacteria in the tissues.

Here is just one of the numerous success stories. This patient was on high dose antibiotics for lyme disease and then he did the Marshall Protocol.. He talks about his illness, how long it took to get an accurate diagnosis and various treatments:

http://bacteriality.com/2008/03/31/interview19/

I agree that if you take care of your immune system, then you can beat lyme disease. When I was on the MP, they would tell us that we certainly could relapse, but if we relapsed, treatment wouldn't be as long as it was the first time around.

I have Dr. Jernigan's new book, "Beating Lyme Disease". If I read anything on chronic lyme disease... I'll let you know. I do know that he has successfully treated chronic lyme and he treated his own condition.

[patsy10]

Those are really good questions.  I have done a lot of research on this disease.  When is enough, enough?  I think this is a question for your doctor but what I have heard from LLMD's is that they treat until symptoms are gone.

I really do not think it is curable at this point.  My personal opinion is that once it's spread throughout the CNS it is really tough to get rid of since it hides deeply into tissues etc....I think it's possible though that IV treatment could work.  I was very ill by the time I started treatment.  It was 15 months after the rash.  I had severe neuro issues, MS- like symptoms already.  I only took treatment for 4 months and then tired of driving out of state so I stopped going. I still don't think I would be be cured though.  I recovered over several years to about 90%.  Then it all came back again.

I personally think early is at the time of the rash.  I will say though, my neighbor had it and she thinks she was infected for several months prior to treatment.  Her symptoms were arthritic though and not neuro.  She fully recovered after a few months of treatment.  It's been years and she is ok.

This is just my opinion based on my experience and research.

I will put this link on the lyme forum as well so others can respond there too.

[wonko]

Maybe this is a better Q for the Lyme forum, but since the discussion has appeared here, I thought I'd ask:

In terms of antibiotic treatment for Lyme, how can we, the patient, tell when enough is enough?  You state that:

"...lyme is not curable if not caught in the early stages.  It always comes back.  I think it can be kept at bay if we avoid stress as much as possible" and that "My symptoms have come back again. I know antibiotics will reduce them but not cure the problem."

So, how early is early for detection?  Is it mesured in time, or how spread the Lyme is?  And how can a Lyme patient tell when they've gotten all they can out of antibiotic therapy?  

There may not be concrete answers for these questions, but I'd be interested in your (or others) opinions and ideas.  

Thanks.

[patsy10]

VaBreeze,

I agree that lyme is not curable if not caught in the early stages.  It always comes back.  I think it can be kept at bay if we avoid stress as much as possible.  I had several years of remission.

PlateletGal,

I am considering the Jernigans products as my symptoms have come back again. I know antibiotics will reduce them but not cure the problem.

[PlateletGal]

Herxing is common in patients who are being treated with antibiotics for bacterial infections. I had some severe herxing symptoms when I first started antibiotic therapy... now my herxing symptoms are down to a minimum. Dr. Jernigan tends to see things differently. He has a program for his patients who are on his formulas (for bacterial infections).... and he says that if you follow his protocol, then you will not have herxing symptoms at all. I must say that I am very impressed with his protocol and my herxing symptoms aren't nearly as bad as they were when I was taking antibiotics.

[VaBreeze]

Thank you for the information on the labs.  I think one issue we run into is having our physicians not like us telling them more than they know (such as referring them to use a specific lab).  It's good when one can find another who is helpful and respective of our views and will work with us.  

I also believe that having FMS impacts our immune system...I've found that to be my case as well.  

One bit of difference I noticed from the MP and Dr. Jernigan's protocol is:  MP expects herxing while Dr. Jernigan stated that if it's working properly, one should not have herxing.  So i'm a little confused on this part.

[PlateletGal]

"The truthfulness is that antibiotics only seem to do justice to if Lyme  is caught in the early stages."

Hi VaBreeze,

Actually, when I was on the MP, I met people who had chronic lyme disease and said that they were recovering on the Marshall Protocol.

Someone can have the lyme bacteria, B. burgdorferi, for years. If they have a healthy immune system, then they may not actually have any symptoms of lyme disease. However... if they become ill or their immune system is run down (stress.. surgery, etc), then that can suddenly change. I'm sure this makes sense to many of our members here. I know many fibromyalgia patients have reported this.

In my opinion, if you have fibromyalgia.... you should consider getting tested for viruses and/or bacterial infections. The problem is... you need to find a lab that actually does the right testing. Standard labs do NOT perform most of the testing we need. For additional information check out: http://www.immed.org/illness/clinical_testing.html

One other alternative is do a therapeutic probe. You can try doing treatment, without being tested, and see if you have herxing symptoms. (the same thing lyme patients go through). There are inexpensive, natural formulas you can try as well.

Knowledge is power and I think it is important for all of us to recognize that we may, as in my case, have successive infections that are causing most of our symptoms. The good news is.... there are treatments for these infections.

[VaBreeze]

I understand what you mean about the shelling out antibiotics for runny noses.  I fell into that category many times, when I did not have an infection.  I ended up having surgery for a deviated septum and haven't had to suffer or use them again for this.  Now we seem to have the 'super bugs' to which our antibiotics provide no 'fix'.  

I feel so badly for those who have been dx'd with Lyme and fearful for those who aren't diagnosed, but have it.  They really need to upstep the research so that there are effective treatments...since it is of epidemic proportions.  The truthfulness is that antibiotics only seem to do justice to if Lyme  is caught in the early stages.  The longer one has it, the outcome isn't as promising with this treatment and yes, there are relapses.  I worry also as I had a like rash after being in a wooded area (1985), and the docs. didn't know what it was...treating it with a cream.  

You're right...very little has changed and this is devastating lives.  It shouldn't happen.  The CDC does need to get a standard test...one that isn't faulty...so those who do need treatment can obtain it quickly to prevent it from causing permanent damage.  They also must use the correct treatment and attack the corresponding co-infections as well.  

Thanks to everyone who posted here.  I'm praying things will change, if not for us, for our children's sake.

[PlateletGal]

I can only tell you that there are two treatments that I'm aware of that have been reportedly curing chronic lyme disease:

~ The first treatment is Dr. David A. Jernigan's treatment. Although it is natural, it works ! He cured his own lyme disease with his natural herbal-homeopathic formulas.

~ The second treatment is a little more complicated. It uses low-dose (pulsed) antibiotics, along with Benicar. Dr. Trevor Marshall has discovered the use of Benicar for Th1 inflammatory diseases. A brilliant discovery and I know it works because I was originally on his protocol. Benicar alone, without antibiotics, appears to enable the immune system to function better and thus kill enough bacteria to cause the resulting immunopathology. Benicar allows the immune system to 'see' the bacteria.

Benicar has minimal side effects in a patient who is healthy. However, in patients who are not healthy. The FDA still hasn't recognized this ! Benicar alone can make these people very ill... due to immunopathology. In fact, there was a MedHelp member who posted in the Autonomic Dysfunction forum. As you can see, he wasn't aware of the MP and for some reason, he was taking Benicar and then high doses of antibiotics together. A dangerous mix.... and everyone who knows about the MP knows why. This is what happened:

http://www.medhelp.org/posts/show/566471


http://www.marshallprotocol.com/forum32/1784.html
http://www.marshallprotocol.com/forum32/1195.html

[patsy10]

I think the problem is due to lack of knowledge of the disease.  Those of us suffering with these kinds of conditions/diseases....CFS,FMS, Lyme and others are at the mercy of the medical profession and I think the majority of practitioners still think it's in our heads.  If it doesn't show up on testing then it's  not there.  Few are willing to look outside the book, research and try to find the underlying cause.  There are some great doctors out there though who are trying to help.  If we had CDC positive testing by a standard lab I do not think we would be denied antibiotic treatment.

I am hopeful for change but am not holding my breath.  I had my bullseye rash in 1992 and got sick at that time.  It was nightmare.  I was treated very badly by the health care profession.  I ended up traveling out of state for treatment.  Long story short, I had several years of remission.  It all came back again in 2005.  I was hopeful that things had advanced but I found things were very similar to 12 years ago.  Very little had changed in regards to lyme.

[patsy10]

That's a whole different story and antibiotics would certainly be indicated in this instance.  Pneumonia can be very serious and life-threatening as you stated.  I was referring to simple colds with a runny nose etc...

[PlateletGal]

According to Dr. Jernigan.... lyme spirochetes have been cultured from virtually every body fluid in cows, including whole blood, colostrum and even fresh milk !! I'm guessing that is why these animals are taking antibiotics. But it is interesting how no public health officials will publicly admit as to what is going on and many physicians won't test for lyme disease. But when I take my dogs to the vet... they always talk about lyme disease and parasites.

[patsy10]

Working in healthcare probably the biggest misuse of antibiotics I have seen is for people with upper respiratory infections.  This includes children and adults.  The illnesses are viral but people think they need antibiotics (which do absolutely nothing for viral illnesses).  I think doctors prescribe them just to appease people.  The amount of people taking unnecessary antibiotics for these type of illnesses is far more than people taking antibiotics for lyme.

I personally am opposed to taking medications myself.  I only take what I have to.  I agree there are risks from taking antibiotics.  Just look at the frequent news reports of children getting MRSA in schools.  This is staph that becomes resistant due to antibiotic overuse.  I resorted to antibiotics as a last measure.  I could barely walk at the time and the treatment worked.  I would never take them long term unless my life depended on it.

[wonko]

I think this is a very confusing subject.  As people are probably very aware, there are a lot of controversies and disagreement when it comes to Lyme.  As a Lyme patient myself, I feel very caught in the middle.

I've read plenty of peer-reviewed papers, especially from Allen Steere and Leonard Sigal, condemning long-term antibiotic treatment as futile and potentially dangerous.  Then of course the folks from ILADS have a different point of view.  Testimonials from the documentary "Under Our Skin" and the book "Cure Unknown" (by Pam Weintaub) also support aggressive antibiotic therapy.

The above article states that over 3 million pounds of antibiotics are used on humans in the US each year.  What about the non-human use?  Most (I don't know the exact figure) of the antibiotics sold in America today end up in animal feed.  Corn-fed cows need constant doses of antibiotics because of acidosis caused by being fed a diet they have not evolved to digest properly.  I wonder which practice creates a bigger risk in terms of breeding a super bug:  Treating Lyme patients, or feed lot antibiotics?  It'd be really interesting to get at the numbers of how much antibiotics are used in a feed lot cow versus a Lyme patient undergoing aggressive  treatment.  

I can't resolve the conflict between the two camps.  As a Lyme patient, all I know is that I want to get better.  I spent over a year seeking my diagnosis, and know that is not long on the relative scale of Lyme patients.  While I often read of the dangers of long-term antibiotics, I don't have a clear understanding of what all of those dangers are.  It's difficult to educate myself, as a lot of information on the subject is suspicious for lacking objectivity.  I know I am somewhat blinded by my strong desire to regain my health, and I should learn more about the risks of the antibiotic treatment that I am on.  

[PlateletGal]

Also.. some thoughts on this from the Marshall Protocol:

http://www.marshallprotocol.com/forum32/1082.html

[PlateletGal]

I'm glad to see you've been checking out Dr. Jernigan's website ! Yes, there is a risk of course with antibiotic therapy... but of course the disease progressing is a bigger risk. Fortunately we have natural alternatives ! ; ^)

Best.

PlateletGal

[VaBreeze]

I think this article describes best the concerns that I would have, should I be placed on antibiotic treatment.  This doesn't mean it won't work, but does give one something to think about in the long run of this horrible disease.