Sorry to rehatch an old article, but I want to do so to help educate new lyme patients, so they're aware what they're up against, when it dealing with and treating chronic lyme.
There's so much misconception out there still because even LLMDs aren't being totally truthful about
how long treatment can be and how many patients actually reach remission, again, the premise of what this post was about
by Deadman. And it's obvious to me, he figured out a lot of the deceitfulness that surrounds this disease. I suspect some of it's due to many LLMDs trying to keep Lyme patients positive, keeping lyme patients minds at ease during the long length of treatment, I get that, but when some LLMDs claim only 2-3 years of treatment or even some of the bold claims made by some in the alternative medicine field, again lyme patients need to be told the truth with what they're up against so they make the right decisions for treatment.
Here's a great article written by a veteran lyme patient, part of it is just a bio, but this was also a good article about
Joanne Drayson said...
Joanne Drayson was bitten by a tick whilst walking her dog in the woods in Guildford, UK in 2003 and had two further tick bites in 2005. She developed Erythema migrans rashes on all three bites but did not know the significance at that time of the rashes nor did the doctor she saw in 2005. She became sick with a summer flu unlike any other she had ever experienced and although that passed within a week, it left her with weakness in her upper arms and upper legs, and joint pain which migrated throughout her body, affecting every joint. It took 5 doctors, 3 rheumatologists and 4 years for her to be diagnosd with Lyme disease, after previous diagnoses of Fibromyalgia, ME/CFS, Musculoskeletal Disease and Polymyalgia Rheumatica, for which she was given 20 months of high dose steroids. Joanne was retired on ill Health Grounds from the Civil Service. She significantly regained her health after long- term combination pulsed antibiotic therapy. Fifteen years after her diagnosis she still occasionally relapses but responds well to a short course of antibiotics.
Keywords here are "15 years," she's been dealing and treating this Disease for 15 years, but still relapses. I think this is a great example of a lyme veteran that probably went through everything she could to treat this disease, but she's still chronic and relapses. But here's the thing, she's better and lives her life comfortably compared to how disabled she used to be. I have to say I appreciate her honesty and telling the truth about
still relapsing! It's kind embarrassing for lyme patients isn't it, it's been 10 years or so, and you're still somewhat not in remission. Maybe you some LLMDs told you you'd reach remission, they claim to treat to cure, you've told friends that you feel cured, but later end up feeling crappy again after a month? But then there comes a time where you have so many people questioning your illness, that when they ask about
your ailment you just tell them you're in remission and don't need meds?
Let me explain something to you before I get into this next article, there's no need to lie on the internet, you're not putting yourself out there, people aren't going to stone you... Tell the truth and let the internet set you free, more you're honest with what your write on here, more the truth gets out about
Chronic Lyme. The more people are saying that they have a cure like Mark FW did and there's 1000s of patients that getting cured by ACC, the more people realize the truth surrounding this Disease, maybe the more the word will get out and people will understand what you're dealing with. Great thing about
the internet is you don't have to deal with people getting into your face and chastising you about
I'm sorry, I've dealt and seen the ridicule for more than a decade due to say people being passed off as a Lyme Nut... Even David Letterman had to bring that up in a segment, despite successfully treating what I believe to be acute Lyme, I think. How many celebrities that still deal with this chronic disease on a daily basis but don't bring it up. Alex Baldwin's a great example who already hates the media, but he has gone on the record a few times, saying he almost thought he was going to die, then later when on a sugar free diet that made him drop all the weight.
Just be honest with yourself and on the lyme forums, whatever is told face to face I completely understand. But I very well suspect that also creates a problem. But hey, again use the internet for what it's worth, get the truth out.
Article - https://www.lymedisease.org/savannah-lyme-disease-mast-cell/?fbclid=iwar2cb2fg-k9q5hxocr8igxg9ik9yslcllngbrcgl1limbuyen2ai9ar5a4q
Video - https://youtu.be/sxtunfmcws8
Here's another article that I think tends to misleading new lyme patients, it was posted on LymeDisease.org then later on Facebook where I saw it. Savannah Marcum's a 20 year old "young" lady that recently went on YouTube talking about
mast cell activation syndrome (MCAS), suggesting this is what's the casue of her persistent symptoms of chronic lyme disease... Remind you Lorraine Johnson who owns the website LimeDisease.org is a true advocate for lyme being a chronic infection, which kind of scares me... So let's get into it!
Lets analyze what she claims, she's been treated for a total of 6 years and claims she's "healed, in remission," but "not cured." Later in the LymeDisease.org article, few paragraphs below claims to only be 70-80% better.... If you're only 70-80% better, why are you saying you're in remission? There's bloodwork, labs and MRI's done before a Doctor labels a cancer patient in remission. We all know there's not accurate diagnostics to tell whether the majority of the lyme infection has been suppressed and you're immune system to control it, we're all going by our own intuition and what we feel like after getting of antimicrobials longterm, antibiotics or herbs, why mislead people...?
When I questioned some of these things on Facebook, someone from her friend or family recommended this book by Stevin Harris, never heard of this lyme doctor. Kind of throws up warning signs right off the bat, a Doctor looking to sell books and possibly influencing his patient into making claim she's in remission. How much does this go on? And I'm sorry, just because a Doctor has a Lyme book does not make them an official Lyme Literate Doctor, I suspect the friend or family member thinks I should consider he's totally legit. Bryan Rosner has a book, so does Stephen Buhner, as well as Dr. Rawls... And three of these individuals have given out great info, but not all accurate information, for instance Stephen Buhner on "biofilms" being natural, and Rawls claiming Stevia can't absorb into the gut. Yet the top ILADS LLMDs like Dr. H are using Stevia with success?
What really scares the crap out of me when she put this 20 step program together and claims there wasn't one thing that made a difference, it was everything" when treating mast cell activation syndrome (MCAS) and Chronic Lyme Disease.
Let me explain something to you, I've been around this disease for almost a decade and I've seen Doctors come and go claiming and theorizing that Lyme Diseae is chronically extended because of mold, celiac disease/gluten(heard that from a Doctor on Coast to Coast AM, EMF radiation, now Dr. Kim Lewis, who now claims due to an imbalanced microbiome due to overuse of antibiotics, yet this same Doctor claims to be the leading researcher in persister cells.. The one thing that always remains and science keeps building up, is chronic lyme is staying chronic due to a persistent infection, mostly likely due to biofilms, persisters cell spirochetes, and coinfections that traditional pharmaceutical antibiotics are having a tough time killing, considering Dr. MacDonald's work, Dr. Sapi's and now John Hopkins. Alos recently with the Yale study saying all the antiparasitic drugs the used on Babesia didn't work or how it took chemotherapy to fully eradicate all forms of the bacteria in vitro in the John Hopkins study. This what Dr. J believes in, Dr. H believes, along with ILADS. Yes, there are other things that a spirochete can manifest and cause a lot of different symptoms, whether it's gene mutation, autoimmunity and constant inflammation, arthritis, and everything in between. There's a reason why they call it the great imitator, but are any of these others things the sole cause of why Chronic Lyme Patients are saying ill longterm?
Question is, what happens when you address the underlying infection with right protocol to address the dormant persister cells, biofilms, and possibly coinfections, for most lyme patients the majority of symptoms do go away for majority of lyme patients long term with antimicrobials. Now there are some lyme patients like Michael J Fox who go end up developing an autoimmune disorder, as well as others like pro baseball star Ben Petrick. I'm not denying that and ignoring the fact that mast cell activation syndrome could a real thing with Chronic Lyme. All I'm saying is be weary of a lot of claims by Lyme patients and even so called Lyme Literate Doctors.
Believe it or not, there are Infectious Disease Doctors like Dr. M in Keego Harbor Michigan who claim to be a LLMD in my home state, but isn't... You have to ask yourself, what makes a Lyme Literate Doctors allowed to use that title, most of us know that it was Doctors who were part of ILADs or at least treated with the same protocols, the group that battled the IDSA. Fast forward 20 years, I really suspect many Doctors and even alternative doctors are misusing the title and claiming to be something that they are not. And with todays studies of learning more about
resilient coinfections like Babesia through the Yale study, more about
persister cells and biofilms through John Hopkins, how many are actually adapting there protocols like Dr. J and Dr. H. Question, does it still make a Doctor Lyme Literate just because they put you on a few antibiotics longterm for a few years then pull you off? Because I hear a lot of that going on.
There's two other things that throw up flags about
what this young girl has to say about
mast cell activation syndrome, in #14 she says mast cell activation syndrome is like PTSD, ummm PTSD? Isn't that what the IDSA has been perpetuating about
chronic lyme disease all these decades. As well as #17, where she said "it's all in your head," some of this could of meant figuratively speaking, meaning keeping a positive mind set, I get that, but then she later goes on to say again, what I said up top, there wasn't one thing that made a difference, it was everything" when treating mast cell activation syndrome (MCAS) and Chronic Lyme Disease.
Let me explain something to all of you, if you do not address the underlying borrelia infection properly with some type of microbials, possibly specific antibiotics for coinfections like bartonella, parasitics for Babesia, you will not get better and progress. As she explained her friend Alex ended up dieing, very heartbreaking.
I suspect she does have 2 good LLMDs and she has been on antibiotics or herbs, and made a lot of progress, but sadly, she hasn't explained that in the LymeDisease.org article and she leads me to believe that her remaining symptoms are due to mast cell activation syndrome. She probably isn't the case considering the new science surfacing on biofilms and persister cells. There's many of us that haven't centered their treatment around treating genetic mutations, POTS, mold in my apartment, and have progressed with treatment just fine. I fear that her remaining symptoms that her other 6 doctors could very much could be misleading her. It's a leap of faith putting trust into 6 other Doctors that tell you your remaining issues could be psychosomatic and keep a good mindset, considering these Doctors probably don't entirely understand the bacteria and the "new science" surrounding Lyme because they're set in their ways and believe what big pharma and the medical systems tells them to believe, which I'm sorry she kind of hinted to in #14 and #17 bullets.
Again, not knocking the other things she recommended, eating organic diets and gluten free, drinking water. These do help with the overall well being daily, but how much they play a role in actually treating Chronic Lyme Disease Infection? How many Doctors claim that if you don't address the mold, EMF radiation, you'll never heal!!! You have got to be careful, because there's a lot of supposed LLMDs and lyme patients that repeat this on the forums.
I even think that Dr. H exaggerates the benefits of taking glutathione, mold, POTs as well as other things. Yes go on a low sugar, gluten free diet if you're sensitive, drink just water as she explained. But some of these services and supplements patients pay for, they end up bankrupting Lyme patients before you know it, things like glutathione are temporary fix to make you feel better, they're not going to cure you.
It's obvious this woman has a wealthy family and great supportive system, so did Yolanda Hadid, I wonder if Yolanda ever admitted she got sucked into a wasting a ton of money on experimental expensive treatments(through Dr. K), removing her fake boobs, which possibly her husband got pissed about
, later he just had it with her and said to Yolanda your disease is psychosomatic, which was later revealed saying some real evil things in the news. She has a new book out and I wonder... Guess what the title of it though is hint, hint, "Believe Me: My Battle with the Invisible Disability of Lyme Disease." Why play into the nonsense and title a book that way when borrelia bacteria infection is a real thing, you just played into your husband's mentality and the others who bashed you. It's sad that a lot of people can't and will not understand other people's ailments, as well as the science behind it, even when they're friends or family know this same person was perfectly healthy a few months ago, or a few years ago.
Moral from this story, be careful what supplements, protocols, Doctors you use, because majority of us aren't wealthy like this girl or Yolanda Hadid. Same thing happened with Tommy Hillfiger's daughter and they stuck her in a pscych ward because she wasn't responding to treatments, you can watch it here. https://youtu.be/eimf5ts_dgg
This is how wealthy people are treating their children and wives, despite knowing that majority of their loved one's were perfectly healthy before Lyme Disease. What is going on with society, I don't get it? So sad!
Again, we've learned a lot since 20 years ago on Lyme Disease, why because of ILADs, as well as some of the original Lyme Literate Doctors, scientists like Dr. Sapi, Ying Zhang, and Dr. MacDonald. It's apparent, just like the article stated above, most Doctors who believe in this disease until they contract it themselves. Majority of Doctors leading the research either have had Lyme like Dr. B or have a loved one like Dr. H's wife who contracted Lyme. Sadly not every Doctor probably shows the empthy Dr. H showed for his wife, incredible Doctor he is.
If you can't tolerate antibiotics, that's fine, try some of the anti biofilm anti persister cell herbs and essential oils Dr. Zhang and Dr. H are recommending. Also even mixing Stevia or Xylitol with Stephen Buhner's herbs he recommends, it works, I've tried it. Listen to what the real scientific Doctors have been saying and leading researchers in Chronic Lyme Disease, yes keep an
open mind about
other things, science is always changing, but be guarded and not easily sucked into snake oil like Greg Louganis with mold or Charlie Sheen that his Doctor has the cure for AIDs. Both are doing pharmaceuticals and antiviral medication to keep them alive, yes I'm sure they do vitamins too, changing their diets and it's important, but without a certain drug tp address their underlying infection, where would they be?
Post Edited (Charlie55) : 12/31/2018 8:45:55 AM (GMT-7)