The LLMD and Ongoing Herx Myth

I have been thinking about this for a long time now, and I would love to hear everyone else's thoughts ...

I think that everyone who comes here to this message board has one thing as their top priority - to regain their health and be well again ... And finding the right path to achieving that goal should be HIGHLY personalized - needless to say, we not only different genetically, but ours paths to feeling as we do have all been extremely varied ...

I have given a lot of thought to this - which, as I am sure a lot of you have done, is out of the indescribable desire to get well ... I want that more than anything ...

When I was first diagnosed and treated by an "LLMD" ( a founder of ILADS ), my condition went from semi-functionable to completely unable to do anything ... I was told to push thru round after round of antibiotics and antimalarials ...

Combinations of antibiotics ... more Mepron ... followup bloodwork ... and the only thing to look forward to was next month's visit, even though I was making zero progress - in fact, I was getting worse ...

I am beginning to think that the perception of "LLMDs" as the fighters for justice and for the rights of the lyme sufferer is a crock of BS ... These doctors have no idea what they are doing with different combinations of harsh drugs, doling them out to already super sensitive and toxic patients ... At best they are misguided parrots who blindly follow some completely unproven and potentially dangerous "guidelines" ... At worst - well, they have a built-in patient base that look to them as saviors and who will come to them for years, even when there is no progress ..

There is something that usually goes completely ignored by LLMDs - in fact, it is the best, most effective way of ridding the body of the debilitating symptoms connected with these illnesses - it is called the HUMAN IMMUNE SYSTEM ... and this amazing work of art called the immune system is completely thrown into dysregulation by round after round of antibiotics ... Not to mention the subconscious chaos we live under from the stress and fear of not knowing what to do, and relying on what amounts to trail-and-error ...

There is a reason that these boards are filled with the heroic people who are fighting this - it is basically impossible to get well by trying to kill yourself into good health, and we come here to find answers BECAUSE OUR DOCTORS ARE NOT HELPING US ... yet we go back, hoping that the next appointment will bring different results ...

I went thru it - thinking that then next combination of rifampin and biaxin, or azithromycin and ceftin would be " the silver bullet" - IT NEVER HAPPENED ... and it is not just antibiotics - it is the assumption that our bodies are riddled with infection and require bombs of agents that eradicate - whether that be from drugs or herbs ...

Another troubling aspect of all of this is the big money this now generates - The last "LLMD" that I saw spoke of some new blood tests she would be looking in to - she went to a "lyme convention" and got a lot of info from the hundred or so companies and labs hawking their products and services ..

This is now not much different than the standard practice of the conventional/traditional doctors .. When I was sitting there, having made no progress with her for a long time, I began to zone out and think about how this is NOT right and how many times I have basically been a guinea pig - and a provider of income ...

"Lyme Convention" ?

A new $600 blood test ?

FL1953 ? ( more like W T F 1953 :)


So what do we do ??

We come here looking to each other for hope and answers ...

I think we need to look at the paths we have taken to get to this point ... We need to find out WHO WE ARE and first address returning our bodies to a state of best defense - our zinc, copper, B12, genetic issues that can be helped and bypassed, diets, etc

I recently had a zinc and copper test panel performed ... My zinc is low in the blood, and my urine copper was NOT DETECTED ... This was done at my request, but when the results came back, the doctor simply said it would all balance out with treatment ...

That was the last straw ..... In doing my own research, the copper deficiency symptoms in me have been there the entire time - low white blood cells, low neutrophils, waaaay premature gray hair, spider veins, nerve pain, inability to tolerate not only treatments, but foods that were no problem years ago and emotional irratibility ...

THESE ARE SYMPTOMS OF COPPER DEFICIENCY

For example - my varied food intolerance:

Copper deficiency results in impaired DAO, which is essential for degrading and dealing with histamine - and much histamine comes from food ... And an out of control histamine response feels like a HERX ... and IT IS NOT A HERX

And histamine causes rashes - it is NOT ALWAYS A BART RASH

Byron White Formulas, while they may be very beneficial, are 40% ALCOHOL - almost half - and nothing sets off a histamine response like alcohol !!

So the supposed "herx" you are feel from a drop or two of A-BART might just be an exaggerated histamine response , which in turn could be a copper/zinc imbalance ...

YOUR LLMD WILL NOT TELL YOU THAT

www.lsialab.com/gb/Background_information

Thanks for the vent ... I'm not even sure where I'm going with this, other than to say that we need to start believing that we CAN get well - these endless "herxes" and blind guidance from LLMDs are something we need not tolerate anymore ...

If we are told everything is a HERX - we begin to believe that our bodies are completely overwhelmed with infection and disease - AND THIS IS NOT THE CASE

Riding in the car makes me feel worse - IS THIS A HERX ? .. DO THE BUGS HATE CAR RIDES ???

It is NOT all about the illness

It is all about YOU

A HEALTHY YOU !!!

Post Edited (Tano) : 5/11/2014 12:26:07 AM (GMT-6)

Not every lyme dr is a good one. Suffice it to say my LLMD saved my sons life. He was on a downward spiral of temper tantrums, not successful academically and headaches that would cause him to scream at the top of his lungs. He is 9 years old and I can recall these events from a very young age. He is a different child on the medication. He never screams has headaches and has straight A's. He is also very athletic.

After his first basketball practice he laid down in the front seat of my car and told me his head hurt so bad he couldnt sit up anymore. I went to his regular pedictrician regarding these issues when he was three and a half. He dismissed me and told me there was nothing wrong with him. Then my baby horse almost died from anaplasmosis and I developed neurological lyme disease. The primary care physician told me not to come back for 4 years. The llmd listened. I was started on moderate doses (within the prescribed guidelines) of abx. I did a lot of research and started other vitamins and changed my diet. I am still undergoing treatment 10 months later but I am 90% better I was able to keep my job, insurance and pay my bills.

I worked together with my dr to find the path back to wellness. I have a long way to go but I can function. I do believe in moderation in the medication, testing etc. Is my llmd a hero ? Yes to me and my family he is the best. He has gone above and beyond to listen to and help his patients. But of course the patient is the pathfinder in navigating the illness.

Post Edited (BarnGurl) : 5/11/2014 4:47:00 AM (GMT-6)

HI Tano,

I am very sorry about your experience but it sounds like luckily you put some missing pieces together for your health.

We cannot judge all LLMD's however by one persons experience and many such as myself had a polar opposite experience from yours. Given my neurological symptoms and what my cardiologist mentioned it was recommended for me to get a port put in but my dr believes less is more. I did 4.5 months of antibiotics among alternative treatments and I'm fine.

I felt better almost immediately after being administered antibiotics, with yes - a few herxes. But had this doctor not been there, there is a good chance I might not be here today.

The reason byron white tinctures are alcohol is so they are absorbed directly into the blood stream, most tinctures are. You can always put the tincture in water or hot tea so the alcohol will evaporate off. There are many that cannot tolerate alcohol that do this.

I'm sorry for your poor experience and you are certainly welcome to rant but I don't like throwing all lyme doctors into one category.

~beth

www.drsusanmarra.com/services/herxheimer-reaction-herx

Rather than posting basically the same things as everyone else, I want to point out that there are many that have come to this forum and no longer post......because they have healed using either a LLMD or other means of healing. I'm one of the few that have chosen to stick around for a while.

While I completely understand what you are saying, I believe your anger may be misplaced. I too went through abx use by a LLMD and only got worse. I was no longer able to communicate effectively (it took so long to express an idea or thought that I often lost track of what the point was); was have symptoms of seizures (absences, tonic-clonic, clonic, myoclonic and more); major cognitive issues (couldn't follow written or oral instructions or patterns, no working memory); seemingly no control over my emotions with outbursts, rage, depression; couldn't regulate my own body temperature due to serious adrenal issues; totally unreal fatigue that kept me in bed most days and more that I won't go into because it was just too miserable to try to think through even now. Sorry, I digressed so much! UGH.

I guess my point is that as you said, Tano, each person has a different healing path to follow. Maybe it's time for you to try something different? Abx are not for everyone. Some need herbs/naturals along with the abx, some can only use herbs/naturals and some have such issues that they have to correct several things in the body before they can ever tackle the tick-borne infections.

Things like mold exposure can stop all healing from tick-borne infections. The body not being able to detox properly is something most of us with chronic infections has to deal with and must be addressed before healing can occur. Co-infections, adrenal issues, thyroid issues, intestinal issues - all of these can make healing from Lyme much more difficult as well.

Some find that they have other issues that must be dealt with before they can heal - it doesn't mean anything is a scam, it just means that -as you said - each of us is unique in our health issues and must find unique healing techniques that will allow our bodies to overcome what it can't on it's own (or we wouldn't be this sick to begin with).

Hang in there and start exploring different options.

Hi Tano,

I was writing a long answer, then hit the wrong button, and everything is gone....

I had, before I started treatment for Lyme/Bart, 2 yrs of treatment to try to boost my immunity: vitamine supplements, repairing leaky gut (total dysbiosis, 0,5% E.Coli where it should be 97%) and bowel inflammation, taking chlorella to bind heavy metals (I had scary results on the heavy metal test), taking immune boosters, GC-maf.

Was checked for many zoonoses, repeatedly for Bartonella and Borrelia, dr found some virusses too that we tried to eliminate with those immune boosters and the GC-maf.
I have histamine problems since years and years, I went on an elimination diet, and felt much better.

Then suddenly the Bart and Borrelia showed up in the test results, and I could finally start that treatment.
So, my dr worked on my immunity for 2 whole years before I started Bartonella and Lyme treatment, now 21 months ago. I started on abx (15 months) and since beginning of December last year I switched to Samento/Banderol/Cumanda.

I had done all the possible things to restore my immunity, but it didn't do anything for the herxes I undergo since being in treatment.
My bacterial load is very heavy, I have detoxing problems (probably because of my cancer history).

I have had histamine problems for a very long time, and for me it does not at all resemble to herxing. At all.
I have often repeated on the forum that it is highly adviceable to check for food allergies and intolerances, and eliminate those foods. It makes the body deal with even more toxins, and I think it is of great importance to not increase the toxic load. This is the normal protocol at my dr's office: you come in for the first time, he prescribes the needed testing, amongst them a food allergy test and a consult with a very good nutricionist who helps you with intolerances.
Herxing and histamine reaction are totally different for me. It also shows in my blood. I have extremely high interleukins, prostaglandins, also high sedimentation, gamma globuline, low wbc and platelets. All signs of a herxheimer reaction. My blood looks like the perfect, out of a book reflection of severe herxing. It didn't look like that when I was having histamine issues.

If I may advice you something? You can go on a histamine eliminating diet, if it is really the histamine that is bothering you, you will very very quickly feel results (within 2 weeks), and I would advice you to stay on it, so that your body is not suffering more under more toxins. You can email me, and I can send you the diet I got, if you want to. It is not easy, but it opens up another world.

Like Trav suggested: there are other options than abx, maybe you could try one of those other options if you are no longer tolerating abx.

I truly think that a good llmd is really trying to make his patients better, but it is so complicated, each patient has other symptoms, other health histories, other coinfections, other viral loads, all of that needs to be taken into account.
My sister has, like me, both Lyme and Bart. We see the same dr, we get different treatments, we react totally different to the abx, her herxing is light, mine is making my life miserable. She can still do some sports, I have to take a break halfway the stairs.
Herxing is just part of the healing process.

Please don't hesitate to email me.

MarieLS

Whoa!

Herxes are no myths!! They do happen when you go on abx or abx herbs, and the abx DO make you feel better in the long run.

Be careful.

Margaret

Thanks for the replies everyone, and being very understanding with my rant ...

I completely understand that a Herxheimer Reaction is a legitimate medical issue ... My point was that the herx excuse is used by many doctors who cannot explain the flaring of symptoms ...

Trav, I don't see how I slandered "Dr S"

He was arrested twice, which is public record - I was simply posting links to newspapers in Naples Fla ..

Believe me, my passion with this will get me well, and one of the biggest motivating factors for me to get well is so that I can in turn help others who are suffering - that is a mission I have in life, and I want so desperately to resolve this ...

Thanks again everyone ...

Hi Tano - Sounds to me that you simply need a better doctor. Your going to get a lot worse before you get better, but you will get better. Your doctor needs to explain this in a way that you fully understand the science behind it and are fully satisfied with it or the unknown of this disease will kill you.

fyi - That rage you are experiencing sounds like a Bartonella coinfection to me and that could also explain why you arent getting better.

I agree that you need to be on the same page as the doctor. It is not a one size fits all disease. Although I do hope if I gain remission my case and my son's can be used towards a body of research to help others. I think you have to communicate clearly with your dr. And if you dont feel you can do that than find one that you can talk to.

Again, thank you everyone ... It really means a lot

As I am sure most of you know, those visits to a doctor's office can be dreadful - from the "HI HOW ARE ?" greeting when you drag yourself in, to the nightmarish footsteps in the hall and little knock on the exam room door ...

Coming here is very encouraging ... and those of you who have had success, and still come here to help - you are angels and your words will never be forgotten ...

His mugging isn't the only thing I find humorous in a perverse sort of way!! LOL!

Honestly, although I think there is some really good info on his site, I'm not a big fan of his personally - I only want to protect this (Healing Well0 site.

" Ya gotta laugh or you'll go insane" Completely agree!!!!!