January 31, 2015
Click here for the full written transcript of this podcast episode.
I recently watched the documentary Under Our Skin, which exposes the hidden story of medical and scientific malfeasance and neglect when it comes to Lyme disease. Thousands of people with Lyme disease go undiagnosed, or get misdiagnosed each year, and many who suffer the troubling effects of Lyme disease are simply told that their symptoms – from brain fog to chronic fatigue to frustrating muscle and joint pains – are “all in their head.”
The film follows patients fighting for their lives and livelihoods, and brings into focus a haunting picture of a health care system that is all too willing to put profits ahead of patients.
I found the film so incredibly interesting that I decided to interview health advocate Erin Elizabeth, who has actually had Lyme disease and dealt with it via completely natural remedies. In this episode, you'll discover:
-Why common tests for Lyme disease won't work, and which test actually does work…
-Why you can have Lyme disease and not even know it…
-How comment, conventional treatments for Lyme disease can actually be harmful…
-The best natural remedies for Lyme disease…
-How to manage the weight gain that can accompany Lyme disease…
-And much more!
Resources:
–Dr. Klinghart's full Lyme disease protocol
–Dr. Mercola's article on Lyme disease
–Under Our Skin documentary on Lyme disease
–IGeneX.com lab for lyme “Western blot” test
–My “REV Yourself” interview with Dr. Mercola
–Erin's website and free e-book “In the Lymelight” at HealthNutNews.com
Do you have questions, comments or feedback about Lyme disease or natural remedies for Lyme disease? Leave your thoughts below.
Congress has commissioned a tick borne disease working group for the huge problem these diseases pose. Dr. Richard Horowitz is on the working group and has some of the very best info on getting better from Lyme-MSIDS – Multiple Systemic Infectious Disease Syndrome.
I have had Lyme for 4 years. I have had the coinfections Bartonella and Mycoplasma (unknowingly) for even longer. The combination of the 3 illnesses together has been horrendous. Practically nothing worked. The ONLY thing that worked at all was complete diet change along with a very carefully designed antibiotic and holistic protocol with strategic/heavy probiotic supplementation. After finding an amazing ILADS physician, I am finally getting better. Some people are able to get better naturally. For me and a large percentage of the sickest and/or coinfected patients, antibiotics are necessary. I used to be 100% against antibiotics. Used alone or inappropriately, they can be very dangerous. Under the care of a skilled, knowledgeable ILADS practitioner, they have saved my life.
I’ve been dealing with chronic fatigue/stress/anxiety/irritability for almost a year now. I’ve tried almost every nutritional option I can reasonably think of (I’ve been paleo/keto for almost five years). I had a Stool Analysis / Parasitology done and it showed insanely high SIgA (950 mg/DL with a normal range being 51-204) as well as no growth of lactobacillus, but everything else was normal. I’ve become pretty overwhelmed by all the possible tests, especially considering how low energy I am everyday. I want to get a Lyme Disease test as I spend a ton of time outdoors, but I’m really not sure where to start, there are so many different options. I am very low on funds at the moment but at the same time, I am ready to get this situation taken care so I can move on with my life. Is there a certain hierarchy of tests that might make more sense than just spending a ton of money on all of them? I’m currently considering a Western Blot IgM/IgG as well as the IgM/IgG/IgA screen (the PCR is the most expensive). Any help or advice you can lend me would be greatly appreciated.
hey, I have been getting thru lyme and rocky mountain spotted fever
to make this easier for me to answer back to u about tips and test could u please txt me at 9792482744
clarisa
Hey Ben,
I’m not sure if you will still check this post, but do you know of any Lume Literate MDs in or around Spokane? I live up in Kettle Falls and just found out I’m postitive. I know there are secret lists of doctors, but I’m having trouble finding someone. I’m hoping you have some better knowledge.
Thanks!
Tessa
Lyme you mean? I'd look into Dr. Toby Hallowitz…he may know someone…tell him I sent you over…
I live in California and have unsuccessfully been treated for lymne . now I am trying LID does this actually work or is LDA different or better? if anyone knows can they please inform me of a doctor amywhere that could get me better?
I should begin by clarifying the fact that I am *not* a physician and this is *not* to be interpreted as medical advice. Please talk to a licensed medical professional about all of this! However, we will contact Erin and see what she says:
are you still having lingering symtoms? i dont know if you can see my reply above to someone else if not itll be easier for me to reply to u if u text me at 9792482744 ill more then glad to help u
clarisa
Looking for a Dr that does LDI treatment for Lyme near Albany NY.
I am looking forward to you posting information you may find on the Ultra Violet I.V. therapy. I know of a LLMD who is using the device and having maxing results with it for Lyme. A friend of mine who was extremely sick with Lyme and coinfections tried this therapy and recovered within a couple of months. It is safe and effective. I myself have chronic Lyme. I recovered and recently relapsed after doing very well for about 5 years. I am trying another new treatment called LDI. I've only had one treatment so far and am very hopeful that it works as well as I've been hearing it does. The Ultra Violet I.V. Is something I am holding back on due to the cost but for now the LDI is within my budget. I was bedridden at one time from Lyme. Misdiagnosed as MS, Lupus among many other diseases. When I was properly diagnosed I tried everything within my power to regain my health. I did it all! Hyperbaric chamber, Chinese herbs, long term antibiotics ( both oral and I.V. ) RIfe machine, Ondamed , vitamins , supplements , mediation , sound therapy, special diets and Acupuncture. I recovered! I am now an advocate to those who need help. I have researched so much on the subject of Lyme I could write my own book! I have spent countless hours day and night as a lifeline on the phone talking to people who are left in the dark about the disease. There are so many that are frightened and mislead by the medical professionals who seem to be uneducated on how to treat Lyme and the coinfections . It's a multi complex disease that is in desparte need of more research funding. It doesn't help that we have divided ideas from the IDSA and ILADS on how to diagnose and treat. Not to mention that the testing methods are worthless. Most of the tests are inaccurate. If your test doesn't come back CDC positive by their standards you will live a life of pure Hell becuase doctors will not treat you! Finding a LLMD is like searching for needle in a haystack. If you do find one close by its a miracle! Mortgage your home… Get out the credit cards and take out a loan to get your life back! However, you WILL GET BETTER! Most insurance companies will not pay for alternative methods of treatment and that is what is needed to treat Lyme. I could go on and on with this subject but too much negativity is not the answer. We need more people to write letters, make phone calls and media coverage to expose the world to what's happening. This is the fastest growing Vector Bourne Disease in the world and most people don't even know they have it….
I’ve heard about a new ultraviolet machine called the UVLRx that’s being used for Lyme patients. It uses a fiber optic thread which is inserted directly into the vein and the treatment lasts for an hour, so all the blood is treated. Has anyone tried this?
I have not personally tried it. Curious to see if others pipe in. I am, however, currently working on a podcast about an intranasal light device. Stay tuned.
I just diagnosed myself with Lyme also. Thanks for sharing the Lyme therapy links!
Part III: MANY OTHER THINGS HAPPEN TO PEOPLE LIVING WITH LYME – I had to have all teeth puled this summer due to rotted roots. surficially, teeth looked great. Under gums? The ruins of Rome. The sewers of Paris. My poor teeth. I kept such good care of them, got complimented often. 40 years old and I now have dentures…….. and I may be billed over 20k for them if insurance won't cover them. Sweet.
AND HERE'S THE BIGGY:
(these have hurt the most over the years, as I can take the physical pain most of the time, or have at least gotten somewhat used to it, but this kind of crap….. nearly all my memorable life has been like this)
My wife of 5 years, walked into my 'office' on the morning of 8 January 2015 and told me she was leaving me and taking our three year old twin daughters to live with another man. Not much else I can say about that right now. Just miss the hell out of my kids. So much.
I've spent the last five years pretty much in isolation. Almost every close friend I have ever had has abandoned or left me. My soon-to-be-ex-wife, since having the girls, has also treated by pretty much like a non-entity as well. Calls are unanswered, texts and emails ignored. Being a trained scientist, the pattern was pretty easy to recognize; as I became less physically able to do things, the less friends stopped by, the lest I was invited out, the less they called. Eventually, it just all ceased, and now I talk to my old, farty dog and a picture of glacier taken in Switzerland. Yeah, my life is quite boring these days.
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If you want to learn about this new LDI therapy, here is part one of the interview with Dr. Vincent. They are all around an hour or so long. I haven't listened to third one yet, but 2 talks mostly about Lyme if you're short for time:
Part 1: http://youtu.be/x1sQbPnQw20
Part 2: http://youtu.be/__Dnq_0iZGU
Part 3: http://youtu.be/Fb7BZXWo3Eo
just wanted to say, I can relate to much of what you said…Chronic illness of any type can be especially isolating and it seems to really be challenging for those of us who were nearly as active as "Mr. Ben Greenfield" himself before becoming ill. I listen to these podcasts and it while I'm thankful, I'm also tortured by the thought that Ben is doing what I think I'd be doing if I had not come down with Lyme. the old me would have loved all his tips on exercise and fitness hacks, but like you said, "gardening would be an extreme sport for me". I was a pro-level athlete before this, running races, surfing big waves, climbing, dancing, working, traveling the world, etc… the farthest from a lazy man, but Lyme can really do a number on your ability to even walk. I like yourself have several injuries from my active days, but i'm unable to repair them or even focus on them while I simply try to have enough energy to cook my autoimmune paleo meals.. yes, people abandon you..I am a very social guy, never had trouble being surrounded by friends and had great girlfriends, but chronic illness is a bitch and most people don't enjoy facing their own mortality and would rather slink off into the horizon and surround themselves with other healthy people who can share a beer and perhaps do something more than watch a movie…I try not to blame these people, heck, I'm super compassionate, but I'm not sure I'd love hanging out with myself these days…chronic lyme or chronic fatigue or fibro type ailments can really be stigmatized, especially for "fit appearing males"..I still walk around with a six pack, 7% bodyfat and pretty good muscle tone at 39.9 years old(40 next week, yikes!)…but underlying is osteoporosis, lyme crushing my organs and causing arthritis, a bad heart, crazy hormonal flux, and most of all a cognitive ability of someone with dementia on most days and with barely enough energy to get from my bed to my recliner…and I'm as tough and stubborn a man as you will find..former wrestler and martial artist that had to be told by coaches to train less…so, you know lyme is powerful when it puts people like us out of work, our wives leave us and even our families don't get it…I would never hope for cancer or any other less stigmatized condition, but in some ways it would be nice to just have the support of one's community and not the scorn while fighting for one's life… I attended a lyme support group today in Portland, Oregon…so many people on their last dollar about to be homeless with this disease…really sad and made me feel grateful that I have some savings left to still be indoors and to pay for treatment.. Hang in there man and as shitty as it sounds, be thankful you had all those previous adventures..I know it makes you only want more adventure, but at this point I'll take just enough energy to work and to sustain the companionship of a woman/potential for a family. FYI, I'm doing Ozone IVs and UVB therapy at moment and on Wahl's protocol for diet and also doing Shoemaker protocol for mold toxins..in addition to the 2-3 daily coffee enemas, daily infra red saunas, niacin flushes, and soon I might be taking Gc Maf injections(fucking expensive!!!)… also hoping to start HBOT for lyme and potentially some bio-identical hormones to re-mineralize my bones…they can't figure out why I am osteoporotic since mid 30's(in sun all the time and weight bearing exercise all my life)..ok, enough erratic ramble from me.. In case Ben is listening, thanks for what you do and perhaps you should contact my ND who is ILADS and on the cutting edge of treatment: Dr. Werner Vosloo Restorative health clinic Lake oswego OR… he'd be a good guest(from S.Africa)…
Part II: I was an extreme skier, surfer, mountain climber, hiker, traveler, fisherman, snowmobiler, cartographer, glacial guy, photographer, lived a few places around the globe, etc… Now, gardening is an extreme activity and I spend most of my time in a special chair or whatever piece of floor or bed is most comfortable. I've now been treating my Lyme for just over two years total. It had 29 years to mess me up good.
When first diagnosed, I started with the traditional 30 day supply of Doxy, and it made me sick as hell. Then went to some Bio blah blah homeopathic crap that didn't do anything. Then on to a mixture of oral Antibiotics for about 6 mths, changed up every 3 weeks (quite standard) and spent 5+ months in bed I was so sick.
Now I'm doing LDI / LDA therapy, and it's actually working. Been doing it for about a year for Lyme, and it is helping. Just started for Bart and Babs. (will provide links at end). The Bart shots have brought out my neurologic symptoms quite bad! That has been hardest part so far, especially odd when it's mostly just my left side, too.
Good points on eating healthy. Most people make treating Lyme too damn complicated and stressful. Find a treatment that helps you, EAT HEALTHY (learn this, or it's your own damn fault. Just get Robb Wolf's book at the Library), and try your hardest to make your life as stress-free as possible. Yes, I know, nearly impossible for us Lymies (I hate that term – sorry). I eat Paleo-esque, no processed food, local farm-bought stuff, grass fed – and I'm under the poverty line, doing this in Alaska Mat-Su Valley area, so most should be able to do something semi-similar I'd think. I may be wrong as I know cities and some neighborhoods can be tough to get good, healthy, inexpensive food. My best advice is stay away from processed sugar like the plague – it just feeds the Lyme – and limit even natural sugars (no juices either!!!!)
Part I: For patients that have been misdiagnosed for years (decades), you will NEVER get completely better, imo. Too much damage is done to the body already. I was infected at age 9 in SW Oregon, misdiagnosed as ringworm as I DID have Lyme rash, and life since has been hell. I am now nearly 41. Lyme arthritis since I was 10, back spasms and knee troubles all through high school and college, and now, all kinds of even worse maladies. All my joints have severe osteoarthritis, and as far as I know not much can be done about that. Plus, damage to my heart and other organs from all the crud that's been pumped into me over the years and from the Lyme itself…. Plus, 3 knee surgeries, back surgery, jaw and face surgery, tons of broken bones in arms, wrists, fingers, ankles……..
Because I was very active person, All docs thought my problems were from sports-related injuries, or it was all in my head, or I was just looking for attention, or I was a big pussy, later a drug seeker, etc……
My story is very long, but I've lived around the world in various places and have seen all kinds of doctors for my problems. It was ME who finally diagnosed myself with Lyme. I walked into a clinic, demanded to be tested, fought with doc about it, and finally reminded the guy I was the damn customer. I got a call a week later sheepishly telling me I was off-the-charts positive.
If you think you or someone you know may have Lyme, the 1st step is take ELISA test. If positive, then do Western Blot. Depending on bands that show up positive on WB, you are labeled either CDC positive or not. Luckily, I was CDC positive. CDC does NOT recognize IGENEX testing. She misses some big points here and delivers some misinformation. Not being CDC positive, but still no doubt having Lyme, is a so hard for so many people. I know too many of them.
Look up the CDC controversy and Lyme. It's a HUGE story that needs to be told badly or this will become a huge epidemic that….. don't even like to think about it. Much of it has to do with private Health Insurance companies not wanting to foojavascript:%20postComment(0);t bill for proper Lyme treatment. Also, quite a revolving door exists between CDC and these "Health" Insurance Companies. You saw that alluded to in Under Our Skin.
Hey
I am a Lyme sufferer who was in the military for 30 years. I was very active. But enough of that.
How long did it take for your LDI to work. I have seen some positive results after the first shot but shot 2abd 3 have had me herxing and feeling unwell. Hope it gets better over time
Hello! I was searching online for LDI (Low Dose Immunotherapy), specifically with reference to lyme disease. A relative of mine has lyme disease and several co-infections/virus. (Anaplasma, EBV, CMV, VZV, Coxsackie virus, etc) Based on your research/experience, would it be worth a shot to try LDI? Any other treatments/therapies that you’ve come across that you recommend? Thank you so much!
I would start here: https://bengreenfieldfitness.com/2015/01/how-d… http://www.podcastone.com/pg/jsp/program/episode….
After curing my Asperger’s Syndrome and dyslexia, I thought I healed my problems. Many things were better… but I still wasn’t strong. One of my clients recommend a doc 45 minutes from me that has a huge practice of Lyme patients from around the world. His website: http://www.lymestop.com has a great list of symptoms to see if you may have it.
After four months my SIBO (small intestinal bacterial overgrowth) and my brain fog is completely gone. The only healing crisis I had was exhaustion, which is improving weekly.
I was one of those cases of Lyme’s Disease that overtly didn’t look like I had it. The Dr. Smith kept saying as he was treating me, “You’re so healthy, I can’t believe you have it.” My healthy lifestyle did pay off, but it didn’t cure the Lyme’s Disease. It took Dr. Smith’s treatment to get it. Now I’m rebuilding my body.