Are we wrong about chronic Lyme disease?

There are so many smart and qualified doctors out there that deny the existence of chronic Lyme disease. What if they are right? They are all smarter and know much more about medicine then most of us on this board. If they are denying it, they must have gone through thinking about it and decided why they are right. If ILADS is right, why are so many and most of us still sick on this board? If I ask for treatment recommendations on this board, no 2 people will have done the same thing. I get that everyone is different but if someone has tuberculosis, they use the same medication on everybody and it works most of the time. If we are so right about chronic Lyme disease, then what is the treatment that we are right about. What are we actually right about. What if it is another condition and we are just wrapped around the idea that its Lyme disease because some doctor that is charging us 2000 dollars a visit says it is. Ive never seen more sketchy behavior in the medical community than with lyme doctors to be honest. Im just frustrated but I do believe in lyme but all this thinking makes me think otherwise. Im just an average Joe trying to prove that a disease exists when world renown Harvard and Yale doctors who's have studied this disease their entire life are absolutely sure chronic Lyme disease doesn't exist. And most of the LLMDs I have seen are money hungry. Ive been treating for about 1.5 years but some days it feels like I am still on day 1. Im so sick of whatever im feeling and I empathize with all of you on this board and I know your symptoms are REAL. Its not in your head. But sometimes the majority can be right and I just want to do whatever I can to make feel better. I hope no one takes offense to this, I just wanted to know what everyone thinks.

No offense taken. Are you aware that companies like $$ Pfizer $$ are currently working on a Lyme vaccine? Surely if Lyme was easily treated with some doxy there wouldnt be a point in this right? These companies hire the same type of "talent" from Harvard and Yale by the way, if that tells you anything about their character and how easily they change their mind. Oh and by the way, that new Lyme "vaccine" has already severely disabled someone in the clinical trials. Just like the former Lyme vaccine did.

Post Edited (LabRatDeluxe) : 6/12/2022 10:56:29 PM (GMT-6)

Bro123….I agree with you. I am so disappointed in our medical system. No one should suffer, regardless if the illness. I am beginning to believe viruses and bacteria are the cause of Lyme and many other medical conditions ( root of problem). Not one treatment might not help everyone.

What did people do 100 years ago. Along with ticks, is it our environment, food and etc we eat causing this awful dilabating pain to so many. What if there is one simple drug that would drastically improve life for so many? Is that drug Ivermectin? Maybe not being used enough because of big pharma. I am to point of telling my doctor I want to try this drug for 6 months and document reactions. Paying over $900/ month for pharma drugs is terrible and strain on my family. This does not include doctor visits and supplements to help with process.

We all deserve better quality of life. Each of us have something amazing to offer to this world. Now, we just need the strength to do it!

Read bitten by kris newby.

Evidence continues to come out against old ways of thinking, the money just isn’t behind it.

bro,

No offense taken. Your observations are legit. Those were good suggestions to watch Under Our Skin and read the Kris Newby book. I saw the documentary but haven’t read the book. I didn’t need to read a book to be convinced that Lyme disease is the result of lab experimentation.

You make a valid point about if ILADS is right, then why are we not well. The reason is not all ILADS affiliated doctors are equal. Even when you have doctors who will follow another doctor’s protocol, those doctors don’t have the instinctual knowledge and experience that the top doctor has, so results may not be the same. Also, many patients fail the more effective protocols because they simply can’t handle the negative effects whether herxes or reactions to drugs or complications from MCAS or other things going on with their bodies at the same time. It’s the sad reality.

Besides being stealth pathogens that alter immune system responses, these pathogens, if weaponized, may be acting in other ways not yet understood. Additionally, there may very well be individuals with genetic makeups that are vulnerable in ways others are not. Genetics are one factor, but there are others - health of gut microbiome, exposure to environmental toxins like mold, and heavy metal accumulation. All of these factors - known and unknown - make effective treatment for Lyme and coinfections very complicated. I don’t know of any one doctor who has mastered all of the related areas. Often it takes more than one practitioner or a very self educated and experimental patient to adequately address everything that needs to be addressed in order to make treatment effective and lasting.

While it can seem like nothing works, there ARE people who fully recover with appropriate treatment. Treatment may still take a year or more, even for those who tolerate it well. I am pretty sure there are many people who recover with treatment. It just seems on here like it’s almost impossible, but there are thousands of people who have been treated and don’t hang out here.

You said:
“world renown Harvard and Yale doctors who's have studied this disease their entire life are absolutely sure chronic Lyme disease doesn't exist. ”
- I don’t know who those doctors are, but if they have studied everything to date and are absolutely sure there’s no chronic Lyme disease, then they are grossly biased and just simply refuse to believe other doctors and scientists’ work.

“There are so many smart and qualified doctors out there that deny the existence of chronic Lyme disease. What if they are right? They are all smarter and know much more about medicine then most of us on this board. If they are denying it, they must have gone through thinking about it and decided why they are right.”
- WRONG. I seriously doubt they have gone through thinking about it and drawing their own conclusions based on ALL the data and research available. Most of them simply believe what they’re told. Buhner spent a YEAR reading and studying all the research available at the time he wrote his book. Doctors don’t get paid to sit around reading and thinking. They get paid by insurance companies to make quick judgements based on a 10-15 minute appointment.

Some (but not all) doctors are smart and qualified. But in what ways?

Before I got sick, I was VERY naive about medical care and doctors, in spite of the fact that I had already seen and experienced signs that things were not the way I presumed them to be. After multiple doctors who seemed to know next to nothing about a human body and how it functions, no longer did the physical exams that doctors did when I was a child, had next to zero interest in finding out what they didn’t know, and expressed the same personality and methodology as every other doctor, the lights of truth finally came on.

I understand now that there are forces of darkness in this world that manipulate people in such ways to hide what is true and real from their eyes and divert them to believe what is false or compromised.

“ I'm pretty disillusioned with LLMDs.. the kindest thing I can say about a doctor that treats with abx for 1.5 years is that he/she is incredibly stubborn. If it takes 1.5 years or more to get better then they have absolutely no idea if it's the abx that are doing what they claim they are doing. There are too many other variables at that point.“

I was sick for 15 months - with so many symptoms and not getting any better.

The first LL dr who treated me helped me but not all symptoms abated. He couldn’t prescribe the antimalarials for Babesia.I plateaued and did not improve further over the next few years.

Then I travelled to Dr J and on his protocols I continued to improve to where I’m at.
I am now able to work again and fully functional.

I have a couple “symptoms “ -
Short term memory issues and sore upper back

They have continued to improve over time .

I am forever grateful for this forum (led me to the Lyme diagnosis ), my LLND and my LLMD (Dr J)

I doubt I’d be fully functioning without the Lyme treatment I was given.

"Are we wrong about chronic Lyme disease?"

There is no consistent definition, that is part of the problem. Conventional Drs are schooled in thought and belief with repeatable and constant symptoms outcomes to define illnesses.

Fibromyalgia obviously does not fit that either, but that's also a scapegoat label to just give up on the patient.

And science does not even know 100% of what antibiotics do to the body yet (in addition to killing pathogens).

Ive had Drs in the same clinic that did not agree with each other on this subject. Many are clearly independent and stubborn individuals.

A special School degree does not guarantee ones intelligence or malleable thought process, other than the ability to remember new information under tested stressful times. (Regurgitating studied info). There is no one definition of intelligence either.

DrJ went to Ireland and the UK to talk about Lyme disease - diagnosis and treatment to medical practitioners and caregivers.
I think it was 2019.

I’ll see what info I can find on it.

Edit to add:

https://www.jemsekspecialty.com/archive/tick-talk-ireland2019

https://lymediseaseuk.com/2019/08/03/a-morning-with-dr-joseph-jemsek-md-insights-into-diagnosis-treatment-and-recovery/

Whether all of us have chronic Lyme, I don’t know. Whether chronic Lyme exists has been proven with both studies on animals where they find the Lyme spirochetes in them after they were given standard abx, and based on many patients not having recovered being given standard treatment then responding to continued treatment.

The reason some of us don’t recover after treatment from, say Dr J, can be because of many things
1) we may have something else or some other combination of health issues
2) no one has discovered any treatment that is as effective at eradicating Lyme and it’s coinfections as rifabutin apparently is at killing tb. I don’t know how complex tb is but there was definitely a time when they experimented on many treatments for tb and whether you’d live or die was anyones guess. We’re in that period for Lyme disease now where no one has found a cure despite what “experts” may say.
3) I’ve been around a lot of heavily credentialed people in various fields. In my experience they don’t know/are not as certain of half as much as they pretend to know when speaking to media or making grand statements. I mean we all remember at the beginning of the pandemic when fauci and company said that masks don’t help prevent COVID at all so stop buying them and if you have them donate them to the hospitals so the staff can wear them to protect themselves from covid right? I’m not making any claims on the efficacy of masks or lack thereof but we all see how you can’t have it both ways like that, yet these people are still venerated as the US’s foremost medical experts. My point being, take what they say with a grain of salt.

I’ve also heard and most of us have experienced how doctors are taught when they don’t know the answer to blame it on the patient and tell them their ailment is in their head, which even a 5 year old with common sense can tell that logic doesn’t test out. It would mean before they discovered cancer, and officially labeled it in their system, their logic would tell every patient dying of cancer, it’s all in your head. It’s an extremely flawed and arrogant approach to basically anything. But it tries to give them a very easy answer to a complex problem, namely, who is telling the truth to their doctors and who is lying or a hypochondriac, and how do we treat illnesses we have no idea how to fix? Life just isn’t that simple.

Are Lyme doctors taking advantage of desperate patients? I don’t have proof but I would guess some definitely are. Are all of them? I think probably not, but I don’t have a study to prove it. Is our medical system very very abusive of patients that don’t fit their cookie cutter mold by first saying we’re liars, refusing to covers our expenses, then hunting down doctors that try to help us yes. I know there have been Lyme docs that tried to keep taking insurance or keeping their rates down, but then medical boards prompted by arrogant colleagues or insurance companies that didn’t want to pay for treatments forced them to stop. Is there a medical system in the world that treats chronic Lyme patients better? I haven’t heard of one to date, please tell me if anyone has found one so I can research what might be involved i swearing allegiance to their overlord and whether they take payment in empty prescription bottles (something I have in abundance).

There's too much evidence about biofilms, persisters, etc for us to be wrong.

Tuberculosis takes two years to get rid of with powerful antibiotics. Lyme isn't an outlier in that regard.

Vizmor said...
There's too much evidence about biofilms, persisters, etc for us to be wrong.

That has gained acceptance though hasn't it? The arguments have shifted a little so that now you'd probably be more likely to hear "yes persistence is possible, but it's not the cause of the patient's illness". I don't think it's a very important argument anyway as there's no protocol proven to eradicate biofilms or persisters in vivo. We might as well keep the focus on symptom resolution.

Vizmor said...
Tuberculosis takes two years to get rid of with powerful antibiotics. Lyme isn't an outlier in that regard.

I was just reading about TB and it sounds like two years would be when it's recurring/drug resistant. When drug resistant, TB can be cultured from the patient and different abx combos can be tested on the culture for efficacy against the particular strain. Without evolved drug resistance it's more like 6-9 months of rifampin plus other abx.

But the issue is really that there's published literature supporting the efficacy of TB treatments and LLMDs don't have that. Tickborn pathogens can't be cultured either. So when an LLMD's patient gets better, especially after a year or more on abx targeting an infection that may or may not exist, we can only guess about why.. patient gets worse it's again mostly guessing about why. It seems the guessing always leads to more abx.

For about 6 years I tried all sorts of treatments and I eventually did get better, but if I'm honest I too can only guess about why. The herbs helped with many of my symptoms (until I would come off of them) and I think the disulfiram helped.. but it's entirely possible that I needed something like 1.5 years *without* treatment, focusing instead on lifestyle habits as Deep_sleep often preaches. Or maybe 6 years was just about how long it takes for someone like me to fully recover??

Hi everyone! Let's get healthy altogether!

BlondieStrong did you just mention ivermectin?

For some reason this whole thread reminds me of this other thread (link below).

Klinghardt said...
Thou shall get rid of the big parasite first (worm) before thou can get rid of the little one (lyme)

Didn't Klinghardt say something like that? Please correct me if I'm wrong. Thanks!

https://www.healingwell.com/community/default.aspx?f=30&m=3749069

Post Edited (Anthony22) : 6/15/2022 5:47:26 PM (GMT-6)

potsnpans said...
.but it's entirely possible that I needed something like 1.5 years *without* treatment, focusing instead on lifestyle habits as Deep_sleep often preaches. Or maybe 6 years was just about how long it takes for someone like me to fully recover??

I have a hard time understanding how also working more on other things with health isn't standard practice. If you remove gluten and decrease sugar, go for walks in the morning to get sunshine to set your circadian rhythm, remove screens one hour before bed, and do yoga, all these remove the possibility to take treatment? It's just something you add that helps your overall health. You are in general not going to get well with just lifestyle treatments but it will accelerate your way to getting into good health.

I believe most here take too much treatment, but even if you stay at your current schedule, this will take more time and energy but it will help a lot.