Lyme Disease is Unique

WHY LYME DISEASE IS SUCH A UNIQUE DISEASE (short answer)

 by Dave Cottrell

Lyme Disease unique.  It is VERY important to be diagnosed quickly if you are bitten by a Bb (Burrelia Burdorferi=Lyme) infected tick.  If you go on the proper antibiotics within the first couple of months, they will get rid of any Bb or co-infections, but once they get a foothold, they are very difficult to get rid of.Unfortunately, very few doctors are what we call “Lyme Literate Doctors” or LLMDs.  They are NOT educated to recognize the early symptoms, and many of them will not even recognize the tell tale “bull’s eye” or  Erythema chronicum migrans  (EM) rash that a small percentage of infected people get in the earliest stages of the infection.  (This rash GUARANTEES without ANY further testing that the cause is Bb, and can be immediately and quickly treated with antibiotics and eradicated usually withing three to six weeks.)

Lyme Disease is Unique

A young crow found me to be a comfy perch

Other doctors that have a bit of knowledge of the disease are taught that unless the rash is present, the person does not have LD (Lyme Disease).  This is what is presently claimed on the Wikipedia website, is absolutely false, and it is my opinion that the truth is being deliberately suppressed and withheld from doctors.  The more this disease is studied by sound research, the lower the percentage goes for those LD infected patients who display the EM rash.

In Canada, it is more likely to pick up Lyme Disease in southern Ontario and east than it is to get it here in Gibsons, BC, but it is possible to get it virtually anywhere in Canada that birds fly or pets move on vacation.  The BCCDC has posted warnings here since 2006, but the greatest occurrence of Lyme in Canada is in Ontario and east.  Something like 50% of the ticks collected in New York state up at the Canada-US border are infected, meaning they must be virtually the same in Canada in that area.

Bb (Burrelia Burgdorfori or Lyme) is a very unique and intriguing spirochete.  It has no ordinary protein cell walls, but has a perimeter of fatty acids, then cilia that help it move, then another layer of fatty acids.  It is not understood how the cilia can propel it inside these layers.

It also is a spirochete, or spiral shaped, which, along with its unusual fatty acid, rather than protein “casing” gives it the ability to move through the walls of blood vessels into surrounding tissue, organs, and even into the spinal column and eventually the brain.

Once in the tissue and organs, many of the spirochetes become indefinitely dormant, forming cysts.  This continues as long as the blood is loaded with active Bb.

Once antibiotic therapy is begun, the active Bb in the blood stream are killed off.  If they are completely killed off, you begin to feel well, again.  The first thing you notice is a return of some of your energy.

Then, however, once the therapy terminates, some of the cysts reactivate, reenter the blood stream, and the process begins again.  This is one of the reasons it takes so long to cure someone who has been sick for a while.  All the cysts must be eradicated to have a full cure.

Another recent discovery (within the last five years) is something called a “biofilm.”  This is an incredibly intriguing shield that the bacteria form right in the blood vessels when attacked by antibodies or antibiotics.  The Bb bacteria form colonies on the sides of the blood vessels, and produce a film over these colonies that shields them from antibodies and antibiotics.

Certain antibiotics can penetrate the biofilm, but they are destroyed in the process.  This is why it is usually necessary to treat Lyme disease with multiple antibiotics if it is not caught in the first month or so.

I am also on several non antibiotic extracts that have been shown to attack both the cyst coatings and this biofilm.  These products are easier on the body than antibiotics, but I am still presently on three antibiotics in very high doses.  It is imperative to go for regular liver tests when on antibiotic therapy like this, and also to take a very strong probiotic (not “over-the-counter.”  I buy a very specific brand online.)

I have done a LOT of research on this disease in the last 4 + years, so if you or anyone you know is suffering from this disease, or even a mysterious, multi-symptom chronic condition, contact me via FB or email.  It’s very likely that I have the information you need to at least get started in the right direction.  Also, pass this on to your own health care provider.  Doctors want to see people get well, but they are generally very under-educated on this disease.

2017 UPDATE

Lyme Disease is still unique.  Unfortunately, one of the things that is still mysteriously and miserably unique about Lyme Disease is that it is still misdiagnosed, said to only exist in certain places, and still claimed to be fully researched and dealt with by the IDSA.  THAT IS NOT TRUE.  To make such a claim in the face of the overwhelming body of good science available today is to be either criminally negligent (Surely the IDSA keeps up with science) or bald-faced liars (which I believe is the case.)

Something is keeping the truth suppressed, even though it is supported by an absolute wealth of good science.  The very unfortunate fallout from this is people like myself, who cannot get insurance to cover our expenses and must pay for our doctors and medicine out of our own pockets, and perhaps even more tragically, people who have another mysterious illness who are self-diagnosing and going on black market antibiotics at great risk to their health.

WHAT CAN WE DO?

First of all, stay alive!  Sadly, far too many people with chronic Lyme Disease are committing suicide.  That is a fact and it’s the wrong choice.  We may be going through hell at times, but we are one of the best possibilities for the next generation not to have to.  The longer each one of us fights to get well, the more opportunity there is for medical practitioners to learn.

Secondly, talk to doctors, nurses and anyone else in the medical community that you can.  Some will listen, even though their own professional societies have told them the problem does not exist.

Blog about your experience.  Tweet about it.  Post on Facebook and any other social media you can.  Talk to your local radio and television stations.  Contact your political representatives.  Education is a huge part of the puzzle.  When enough people finally understand that this is a real, scientifically proven problem that needs to be dealt with, the research dollars will begin to be unlocked and doctors will begin to be able to start treating people without fear of censure.

Even better, when it is finally understood by the medical profession that this disease can hit people virtually anywhere, and that it can usually be cured quickly and thoroughly if it is caught in the early, acute stage, doctors, most of whom WANT to cure people, will learn how to recognize and diagnose the disease, which is likely the biggest step there is in eliminating chronic Lyme Disease altogether.

30 thoughts on “Lyme Disease is Unique

  1. Tres interessant, et on se sent moins seule avec nos nombreux maux.
    Diagnostique depuis 13 ans avec fatigue chronique, fibromyalgie etc…
    Depuis la fin janvier 2013 j’ai recu le diagnostic de maladie de lyme par une specialiste aux E.U. Il faut travailler ensemble pour que cette maladie soit mieux connue et traite, car ca detruit nos vies. Bonne chance a vous!

  2. Où pensez-vous que vous avez reçu l’infection initiale? Était-ce en France ou en Amérique du Nord ou un autre endroit? Cette maladie a été détectée dans de nombreux pays différents, y compris l’Ecosse. La souche de Burrelia est quelque peu différente dans des endroits différents, mais les symptômes sont très similaires. Certains scientifiques soupçonnent qu’il ya près d’une centaine de souches différentes de Burrelia aux Etats-Unis, seul.

  3. Cindy, I have used Cryptolepsis, A-Bart, A-Bab, Banderol and Samento. I had quite a herx on the A-Bab, which would suggest a Babesia infection, as well. I have also tested positive for Burrelia via the Western Blot and Bartonella via standard government lab tests.

    • Hi Marion. As I mentioned in an earlier reply to Cindy, I have used Cryptolepsis, A-Bart, A-Bab, Banderol and Samento. These are natural antibiotics that have been proven to be at least somewhat effective in fighting some of the co-infections of Lyme disease. At this time, there is no known natural antibiotic that is effective against Lyme burrelia. I and many others have searched extensively for such an elusive agent, to no avail. There are many things that are claimed to be effective against Lyme and its co-infections, but they are not, and their greatest benefit is most likely the dollars they put into the pockets of those who would take advantage of people who are suffering.

      One thing DOES need to be mentioned here, though. There are many natural and holistic treatments that may boost the immune system, detoxify the body, and increase energy and cognitive levels. They should be considered, especially for support during antibiotic treatment, which basically is the practice of putting poison into your body to kill invading life forms, while trying not to kill yourself!

  4. Hi Marion: I’m currently on my 2nd dose of Doxy, a probiotic, multivitamin, Curamin, Banderol and Samento. If you use the Banderola and Samento be careful and start slowly. It will catch up with you quickly and you will feel terrible.

  5. Good advice, Cindy. Start really slow and build up from there. If I recall correctly, the dose listed on the bottle is pretty high. Best to start with maybe 5 drops in water a couple of times a day and work up from there. Those ones can give you a powerful herx.

  6. Dave:
    I’ve been on doxy since Aug. 8. I’m feeling the twinges and aches in the same places in my body as when I was initially diagnosed. I realize this could be from the banderol and samento killing the dormant bugs but also makes me wonder if they are immune to the doxy now. Any suggestion on a different antibioctic I can discuss with my doctor? Thanks.

    • Hi Cindy,

      It’s not unusual to feel a lot of pain when taking antibiotics if you have Lyme disease, because the proteins from the bacteria are a neuro-toxin. I don’t have the information right in front of me, but there was a good description online about the way these toxins work between the nerve synapses, as I recall. If your pain level has increased since going on the antibiotics you’re on, it can be from the die off, but from what I am finding, it can also be due to the body being overloaded and unable to flush all the toxins out. You will have to discuss this with your practitioner. Have your liver tests been good? Ask your doctor about adding serrapeptase, to help with the toxins, especially in the blood. If your doctor would like to consult with another Lyme doctor, Dr. Eric Chan of Pangaea clinic in Richmond, BC, is a good person to talk to.

  7. Thanks everyone for the comments. I have been muddling through all this information the past six months and it has been overwhelming, and at times confusing. Especially in the disease description. I just started doxy after seeing an infectious disease specialist here in Southern Ontario who is treating for as she puts it “an unknown”. She wouldn’t admit I had Lyme’s because I am atypical and have not had the rash. She does think I have a co-infection or something else. Reassuring I know. She then prescribed doxy which I understand to be a Lyme antibiotic??

    I should note that I found a tick (in my nose) positive for Lyme’s, blood work Ontario ELISA inconclusive, IgeneX inconclusive, and a whole weird wack of strange body aches, crazy dizziness and spontaneous food sensitivities which all started one week after I found the tick (in my nose). I have been warned by my naturopath that I will feel bad and it is a common treatment for Lyme’s. Sadly, I asked the MD about following up with probiotics and she smurked and said, “if you feel it is necessary”. I feel it is necessary.

    Now when they say I will feel bad, and it is a very powerful antibiotic, should I assume I will feel BAD?

  8. Marion, it is very encouraging to hear that your Naturopath is knowledgeable about Lyme disease. The naturopath is correct; ANY antibiotic treatment can make you feel really bad if you have an active bacterial infection such as Lyme disease and co-infections. It won’t necessarily make you feel bad, but it CAN make you feel terrible.

    Your doctor is smitten by the same misinformation that so many MDs are smitten with; the rash is NOT typical. Today, with the overwhelming abundance of good science available, I would have to say that your doctor has been outright lied to, and needs to do her homework. The statistical presentation of the “Lyme rash” has been going down steadily with research, and it is becoming more and more apparent that it only shows in the minority of cases OR is hidden (ie, in the hair).

    Your doctor is also misinformed about probiotics, which is typical of the vast majority of MDs and hospital staff, today. That’s the number one reason for so many cases of so-called “Super bugs” showing up. The antibiotics kill off the good bacteria in your gut, leaving the deadly strains to thrive.

    They now are doing feces transplants (yukky, but works) to treat the super bugs. If they put their patients on STRONG probiotics like HMF FORTE by Genestra from Seroyal at the same time they put them on antibiotics, they would solve this problem in most cases.

    YES!!!!! Go on probitics! I highly recommend you get the HMF FORTE (you can order it online from Rockwell Nutrition. http://www.rockwellnutrition-canada.com/ in Canada and http://www.rockwellnutrition.com in the USA. The recommended dose by most naturopaths is 2 capsules three times per day at meal time or after taking antibiotics.

    Finally, never give up! Don’t be too hard on your MD. She has been fed a lot of misinformation by the College. Why is the question none of us have a good answer to, yet.

  9. I’m just wondering if I need to have my doc change my drugs (antibiotic) to give the bugs a wake up call. I’ve also read where doxy promotes biofilm which is why I’m takng the microbial drops. It’s just so frustrating! Thank you for your knowledge and support.

  10. Hi Cindy,
    I hope some of this helps. From the research I have read, it is not so much the drugs that promote the biofilm as it is the bacteria that create a biofilm that inhibits the effectiveness of the drugs.

    Lyme burrelia does not “like” doxy or any other antibiotic, but it also does not like oxygen. That’s why it tends to leave the blood stream, especially arterial blood, go into surrounding tissue, and form cysts. It also forms colonies in the blood that it protects with this biofilm.

    You antibiotic may go through the biofilm barrier, but tends to be destroyed in the process. This is why several different antibiotics or such things as the microbial drops and/or serrapeptidase may be necessary.

    Unfortunately, this is a very frustrating disease, and it can be a very long battle, if it isn’t caught early enough.

    If you message me through our contact page with your location (country and state or province is all I need), I can give you the name and contact information for a Lyme literate practitioner in your area if there is one.

  11. I will send you a private message, Cindy. I have listings for your state, but due to difficulties with the College of Physicians and Surgeons (the licensing branch in each state and province), I cannot openly publish the information. Look for an email from me.

  12. Wasn’t sure where to post this, but since we were talking about doxy …

    I was wondering if anyone ever had some side effects to doxy, whilst on doxy, that would look like a rash? Woke up this morning after what I think was a herx yesterday (on-going unexplained symptoms from before returned and left me bed ridden all day). This morning I woke up and I have a rash, in one spot, with a raised bump in the middle and as red haze around the outside. GP (who I get along with) gave me a topical cream and to watch whether it goes away or grows. He thinks bad fungal/yeast or drug reaction.

    • It’s hard to say what has caused your rash, Marion, as there are a number of possibilities, including the one your doctor is treating you for. However, Lyme disease can cause a variety of non-typical rashes, as can some co-infections. Also, you must not let your skin be exposed, even briefly, to the sun when you are on doxy. It can cause skin rashes, itching, skin discoloration and even severe sunburn. Make sure to use a good sunblock and cover up.

  13. Marion;
    I’ve been on doxy for two months with no side affects….just lucky I think. I hope you are also taking a good probiotic?
    Cindy

  14. Good call on the sun Dave. I’ve had some weird rashes on my hands even with sunscreen. I ride my bike a lot and hands are exposed.

    • I’ve been on doxy for a month now, 100 x2 a day, and have yet to get a sun burn. Guess that is good. No major improvement but slightly more energy; duzziness and vertigo persist. The rash hasnt reappeared but a small development in my “I dont know”. I was Onatrio Heath tested fio a million and one things and finally got a positive for something. I am positive IgG for Bartonella. I have been told I have also developed a heart murmur so am waiting on the EKG appointment. Estimate is another 3 months of doxy. I am puzzled why IgeneX didnt pick up the co-infection. So this is now 6 months after primary symptom start and when I found a tick (positive LD) in my nose. Dave, would you be able to send some practioner contact or support group info my way for the Burlington area? My email is alyson.prokop@gmail.com

      Anyone else positive Bartonella?

      • Hi Alyson. I will send you that information after replying here.

        It`s good to know you haven`t had any sunburns. Just be careful. I`m on doxy again, too, and have not had any sunburns, yet. (400mg per day). I have been fighting Lyme disease and several coinfections, including Bartonella and Babesia, for almost six years. Hang in there!

        I still have vertigo and extreme wooziness very often that can last for days and weeks at a time with little or no break. It took too long to get diagnosed and treated, and then I was misdiagnosed and given a short term antibiotic treatment, which is the worst thing possible to do for Lyme disease, even worse than not treating it at all.

        I am vastly improved from the beginning, when I was almost completely bedridden. I still have severe energy limitations and a lot of pain (like having acid all over my skin), but am almost one hundred percent functional, just at a much lower level than I used to be.

        Most, if not all MDs who have not been trained in Lyme disease and coinfections will tell you that Bartonella is simply common Bartonella hensellae, or “cat scratch disease,” something that humans have been exposed to for thousands of years and that our immune system readily deals with.

        Two things are incorrect with this assumption. First of all, when one has Lyme disease, the immune system is suppressed. Never let a doctor or specialist get away with telling you that your immune system is naturally weak (a genetic anomaly). They like to say this when they cannot figure out how you continue to have persistent Bartenalla, even after antibiotic treatment.

        Secondly, modern science is suggesting that there may be at least one hundred different strains of Bartonella in North America, yet only one has been studied! This is logical to expect, since bacteria are the only complete organisms known to be able to constantly mutate and yet continue to be viable (able to survive and reproduce).

        Your heart murmur is very unfortunate, but may clear up with treatment. You really do need to go in for a stress test to make sure it’s ok.

        Finally, regarding why the IGENEX screen did not pick up the Bartonella: there is a likely simple explanation. It depends on what test you took. The most common test is only for Burrelia burdorferi, the Lyme bacterium. Some doctors are now getting their patients to have a newer test which tests for the most common coinfections. You probably did not have that one.

    • I am sorry for taking so long to reply. As I am sure you know, we lymies must prioritize our time, and I just haven’t been getting back to this site. Please reply to this message if you still want to.

        • Hi Aleisha. I hope you are feeling better. I really apologize for not answering sooner. I am still battling the monster and just have had too much on my plate to keep up.

      • Please, how are you doing now? Are you taking antibiotics, and if so, which ones? Is your pain gone? Thank you for your blog, and I am so sorry you have this infection.

        • Hi Susan. I am taking bicillin by injection, which is giving the best results I’ve had in this ten year battle. I started at three times per week, but am now at twice a week. The pain isn’t gone, but I have way more energy and mental clarity.

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