Understanding Lyme, and Autoimmune Diseases

Hello Everyone,
Thanks so much for all of the posts and information.  I too have been dealing with a Lyme co-infection called Babesia (I guess that there are 800 or so additional tick borne pathogen in addition to Borrelia). This is tick borne as well and I was super sick but in subtle non-tangible ways. Three years before, I had found an embeded tick which I didn't get concerned about but I just became increasingly ill.  

I was diagnosed by a chiropractor in Bloomer Wisconsin who specializes in Lymes (Lindsley Chiropractic https://www.midwestnaturalhealingcenter.com/ ) and he uses kinesiology.  Thank goodness for him, as I had no idea what was going on, and traditional medicine was zero help.  Dr. Lindsley said that he had never worked with anyone with ALS, MS or Alzheimer's who did not also test positive for some tick borne pathogen.  

Though his initial diagnosis was helpful, and all of the supplements were somewhat helpful, I wasn't improving as much as I thought I should or could.  Many of his supplements were in an alcohol base, and though he said they could be boiled off, that seemed counter productive.  When I almost died in an airplane enroute from Minneapolis to Ireland because the glutamate he assured me was going to be helpful caused an hyper inflammatory response with overstimulation (...I had a brain injury years ago so perhaps I was more sensitive??) I decided I needed to go at this alone to navigate my way back to health.    

I was able to get off the plane in Toronto and took a bus back to Western Wisconsin and because I am a bodyworker trained in cranial sacral therapy as well as other manual therapies that deal with fluid regulation including circulation, I worked on myself almost the entire time to re-establish homeostasis within my body.  It was super scary.  People must have thought I was so weird.

After this, I began to do my own research and the primary books that have been most helpful to me have been referred to above:  Lymes Disease and Modern Chinese Medicine by Zhang and Zhang, and Natural Treatments for Lyme Coinfections, Anaplasma, Babesia and Ehrlichia by Stephan Harrod Buhner.  Dr. Zhang has a clinic and a supplement product line which are very good, though a bit expensive.  https://www.hepahealth.com/ctr/web/index.jsp?action=showproducts&categoryid=5
If a person can show proof of being a health practitioner of some sort, you can receive a discount.

I found Zhangs protocols more helpful than Buhner's, but appreciated the great medical definition of the biological processes that take place in the body.  Lymes and coinfections are stealth pathogens, and they are not bacteria or virus or fungi (or perhaps there are elements of all 3??).  They are in the category of being a prion from what I understand.  I am currently reading a book about the history of prion disease called The Family That Couldn't Sleep:
https://gustavus.edu/neuroscience/brainbooks/The%20Family%20That%20Couldn%E2%80%99t%20Sleep%20A%20medical%20mystery.pdf (free download)

I also appreciated Buhner's detailed descriptions of the cytokine storm phenomena that creates inflammation and something similar to an allergic reaction to yourself.  What was not helpful were his protocols because almost everything that he recommended was in tincture form, which requires a high concentration of alcohol which can be damaging to the liver.  I realize that small amounts of alcohol for healthy people is not a problem, but in my experience, the liver is one of the most affected organs and shouldn't have anything additional to stress it.  Powdered herbal extracts worked best for me, which is what Zhang sells, as well as other product lines.  

After I began my own protocol for healing, I felt really good.  I was able to walk my dogs again, and stick to commitments for outings etc.  But then about 2 months into it, I got super sick.  I was pretty sure that the chronic pathogen infection had become acute, so I stuck out the high fever, sweats, vomiting/dry heaves and incapacitating  focuses exhaustion for two weeks until I was becoming too weak to get out of bed.  At this point I introduced colloidal silver (CS) into the mix and began quickly recovering.  I had taken CS in the past but it had been only mildly helpful.  I now understand that this is because the body needs to be strong enough to bring the infection to the surface so then the CS and other remedies can fight it.  Buhner emphasizes the two prong approach to dealing with Lymes by both supporting the immune function organs as well as then fighting the pathogen.  

This began a process of every third week being completely debilitated with another round of the same symptoms, but the primary focus of my body's healing seemed to rotate from organ to organ.  It was horrible.  No one wrote about a process like this... but most people seemed to think that you could only manage symptoms and not actually heal.  
It was absolutely horrible for over a year.  Not for the faint of heart.  When the 'pandemic' hit, I noticed that hydroxychloroquine was an anti-Malarial drug... and the Babesia coinfection is also in the Maleria family (according to Buhner) so I added the Dr. Zelenko protocol (vit c, quercitin, zinc vit D) to my own and it reduced the 'every third week' symptoms to only minimal discomfort that I could easily manage.  Eventually the rounds became less and less intense and now I only sometimes feel a little off.  I think that I still have a ways to go, but I am fully functioning again and able to walk my dogs 10 miles and work in the greenhouse.  

The primary herb that helped me was Artemesia Annua.  This is also known as wormwood or Sweet Annie or Qing Hao in Chinese medicine.  
If you want to grow it yourself:
https://www.johnnyseeds.com/flowers/artemisia-sweet-annie/sweet-annie-organic-artemisia-seed-1700.html

https://strictlymedicinalseeds.com/product/artemisia-annua-qing-hao-sweet-annie-potted-plant/

Some states, such as South Dakota, consider it a weed and so seeds cannot be shipped there.

The Dr Summits recently has a symposium of healing Lyme's
https://drsummits.com/healing-lyme-vip-access/

and through them I learned about a local physician who diagnoses and treats Lymes using the mail. He uses herbs as well as the Rife machine (mentioned in a thread above),
https://www.connersclinic.com/

Klinghardt institute (one on the West Coast) also specializes in Lymes and has protocols and info available for free download.
https://klinghardtinstitute.com/

And just to bring this full circle... I have flown again with no problems since the near death experience several years ago, and I wanted to pass on some links about possible origins and continued considerations of Lyme and prion disease.
https://truthstreammedia.com/?s=lyme

as well as
 https://strangesounds.org/2022/02/nobel-prize-2015-for-the-artemisinin-and-ivermectin-discoveries-but-it-is-prohibited-to-use-both-against-covid-what-the-heck.html

https://files.constantcontact.com/daa02ded201/65939165-b57c-4a51-84f7-51fe8b6bee16.pdf?AID=10296303&PID=8161620&SID=ktgal3l38k02l8xl0mcu0&pn=cjaffiliate

A followup post from my journey dealing with Auto Immune Protocol

Firstly I've found some very good information on YT from the following sources

Jason Fung who has many videos about issues like Fatty Liver disease, Autophagy and related issues
Nutrition Facts channel has some excellent videos among them is "The Best Diet for Hypothyroidism and Hyperthyroidism" and "The best diet for Thyroid Function"
Dr Andrea Furlan "Anti inflammatory diet for Chronic Inflammation"
David PerlmutterMD "how gut bacteria affects blood sugar"
Dr Jin W Sung has MANY MANY fantastic videos on Thyroid and Hashimoto
Dr Westin Childs "best supplements for Hashimoto"
Dr Vivek Joshi has some very interesting discussions about natural remedies and diets that can help
Adamimmune channel documents his experience with AIP

Yes its a boatload of material. I managed to get through it all by cutting sports on TV. To each his or her own I suppose. Plenty of time for learning when not watching dramas or sports imho

So in essence we need to purge the gut of harmful microbacteria or microbiome. This takes quite some time and we have to endure the cravings much like someone trying to quit tobacco or alcohol does.
My wife has commented that I smell differently. Sometimes better and other times worse

There are a multitude of ways to do this, but essentially we need to cut just about all the "fun" foods from our diet. Especially grains, other complex carbs and sugar which is poison...
Specifically for Hashimoto we should avoid Tofu and any Soy based foods as they hamper the Thyroid's function. Also to avoid are tomatoes and eggplants.

Eating loads of Garlic, Ginger and Turmeric has also helped me feel much better since the start of 2022

Here is the initial list AIP

AVOID
gluten
all grains rice, oats, millet, tapioca, teff
dairy
whey
gmo protein soy corn
lectins and nightshades
seeds and nuts
legumes
tomato, potato, eggplant peppers

EAT
vegetables
fruit
healthy oils especialy Olive Oil
free range grass fed meats

elimination diet

Reactions can be
mild headache
stuffy nose
wheezing
fatigue
GI and or bloating

Results
decreases HS-crp (C reactive protein)
normalizes WBC (white blood cell count)
improves general health
improve vitality

Here are some Chemicals we should avoid for Hashimoto
Aflatoxin grains, dairy, vegetable oil, cosmetics
Formaldehyde Adhesives, fabric binders, shaving cream, drinking water
Trimellitic PVC pipes, fiberglass, plastics, tanning agents, perfume, insect repellent
Isocyanate Upholstery, mattress foam, window and wall insulation, carpet adhesives
Benzene Cigarette smoke, gasoline fumes, exhaust, pesticides, glue
*Bisphenol A plastic, coating of beverage cans, sales receipts. This one in particular is pervasive. If its clear soft plastic DO NOT USE IT especially water bottles
Tetrabromobisphenol A Electronics, Soil and food contamination
Mercury Amalgams, medical implants, water and soil contamination
Parabens cosmetics, shampoo, skin moisturizers, food additives


There is more but I think this wall of text should suffice unless there is a request for more of the data acquired over the years

I hope my input gives hope to others confounded by these illnesses.  8 yrs ago, I was diagnosed with MS- woke up one morning and had to learn to walk all over again. I was suffering from other illnesses as well- Hyperthyroid, Hep C, Tachycardia, Vertigo, Angina, until I discovered the Medical Medium/ Anthony William (medical medium.com), online.
All the diseases I had and those I'm reading about, here on Permies, stem from an infection of the Epstein Barr (EB) virus. In fact, EB causes more than 60 different diseases- Lyme, Bell's Palsy, Graves Disease, MS, Dementia/Alheimer's, Heart Disease, RA and other autoimmune diseases, depending on where it is embedded in the body. EB is found in 95% of the population!
When I committed to omitting certain "foods" in my diet and incorporating others, I had a seemingly impossible recovery time of less than 3 months; my energy and weight increased, memory returned and apparently, I am immune to viruses now.

Main Points:
1) Excess fat in the diet will overwhelm the liver and force it to release its sequestered store of toxins and unprocessed fat into the bloodstream, eventually collecting in the heart (plaque), bones (Arthritis), brain (corroded neurotransmitters). etc. A common sign of a stagnating liver is belly fat.
2) The body does NOT attack itself! The immune system is after the virus and if EB is embedded in tissues- like the thyroid, it will bury itself deeper to escape attack, which means more collateral damage in the form of inflammation.
3) The EB virus, in a feat yet unknown to medical science, EATS; it was cultured in the lab on our favorite foods- eggs, dairy, gluten and when it escaped into the general population, it found  a lot to eat in a typical human. EB also developed a taste for environmental toxins- like Glyphosate. If it eats, it defecates and it's waste is many more times toxic to the body than the toxins themselves.
4) Fat (Lipids) in the bloodstream oxidizes heavy metals, creating runoff that bleeds into surrounding tissues- in effect, spreading the metals throughout the body. This plays havoc with the nerves- numbness and neuropathy are common symptoms, but in the brain, the damage is more insidious .

These are some of MY main points from the Medical Medium's work; there are more, in fact, his books are incomparably "dense" with medical knowledge.

Finally, in the event that suffering is severe, I'd suggest one skip the introductions and immediately start with the healing protocols the MM provides- celery juice; you'll need a good juicer (https://www.medicalmedium.com/blog/celery-juice) and the detox smoothie; you'll need a good blender (https://www.medicalmedium.com/mm101/medical-medium-heavy-metal-detox.htm)  

Unfortunately the potential of Stevia leaf powder to kill Lyme bacteria only worked in the lab.  The stevia tickles our sweetness sensors but does not get into the body so does not kill Lyme in people.  Too bad.  That bad news is according to a doctor easily found with a web search; it was the only post I saw on Lyme written in 2019 or later, 2017 was when the research was done in the lab.  Many posts are repeating the hopeful study in 2017 and 2018.

Altho' this topic seems to be 3 years old, I will add my two cent's worth to the discussion on Lyme disease. I live in an area where deer ticks are rampant. Since I'm a gardener and work in an area known to have infected deer ticks (I have had at least ten infected deer tick bites), I take extreme care when going out to work in the gardens. I use a 25% Neem oil to 75% olive oil mix on my skin prior to dressing, being sure that my skin is coated with the oil. Neem is a deterrent to bites. I wear sturdy foot wear, socks and gaiters, even when wearing shorts. During my time outside, I visually check for ticks and remove any that I see. They go into a bottle of alcohol where the die. Don't think that removing them and tossing them back into the woods is a good idea. My mom took a piece of paper napkin or toilet paper, wrapped up the tick and burned it.

In 1997, my mom had a bite on the back of her thigh. The doctor said it was a spider bite. There was a dinner plate-sized bull's eye rash on her thigh. I suggested she have a Lyme test but she didn't listen (my mother NEVER listened to me). Her health began to decline to the point where she was in bed most of the time. This was a 69 year old woman who was an avid gardener, hiked, mowed her own lawn, did her own house painting. Two years later, he knee swelled. When she went to the ER, the doctor drained the fluid. Two days later, she was back in ER, more fluid drained. But this time, the doctor didn't like the look of the fluid and sent it to be tested. She tested positive for LATE STAGE LYME DISEASE. The damage to her knee was so severe, she had emergency surgery on her knee. The doctors put her on Doxicyclene, a 21 day dose. She threw up on the antibiotic and didn't finish the entire dosage. Her health continued to deteriorate. She began to have breathing issues. My mom never smoked, was never exposed to second-hand smoke. Then heart issues and Type 2 diabetes. Two stents later, she developed a very rare cancer of the uterus, unheard of in women of her age. She had a hysterectomy and declined further cancer treatment.

After her second diagnosis for LATE STAGE LYME DISEASE, she received a 28 day, IV antibiotic treatment. She never recovered from Lyme Disease.



Four years after her hysterectomy, she died of cancer.

Now, the interesting thing is, she had Advanced Lyme Disease twice. Or at least that is what the doctors said. But she never told that she didn't finish the first round of antibiotics. And our family does not have a history of cancer of any kind! And the breathing issue? I can see how she developed Type 2 diabetes since she was bed-ridden for years but maintained her healthy appetite and she did gain a lot of weight. The heart issues were caused by overweight...or was it?

When I get an infected (or any) tick bite, I'm at the Urgent Care center right away. On more than one occasion, I have been told that the tick was NOT infected! When there was an obvious bull's eye rash, a raised, red area around the bite and the skin was feverish. I will NOT leave until I have the antibiotic. I have had words with the staff about the proper treatment for tick bites but it seems to fall on deaf ears.

Most recently, the treatment for a tick bite less than 72 hours old is 2-100 mg Doxicyclene, taken together with food. So far, this seems to be working, but I really can't tell. The theory is that the antibiotic will kill the virus before it really takes over your blood system.

The WESTERN BLOTT test is the "go-to" test for Lyme. However, the results are mostly inconclusive or negative unless you are in a full-blown infection. If you have the test done before four weeks have passed since the bite, the test results will be negative. The doctor won't test you again!!! So, be sure to get the antibiotic, take it and then a month after the bite, get tested.

Many doctors don't believe that Lyme Disease is real. Many of the chronically sick people have undiagnosed Lyme Disease and doctors are so blind, they can't see the forest for the trees...or the tick bites.

Since I am NOT going to change my hobby of gardening and there seems to be little to do about the tick infestation, I am a guarded gardener!

I know several people who have suffered and will continue to do so since they were not diagnosed early and treated properly for Lyme Disease. It is a real illness, not something that the patient is given Prozac for!

AIP protocol

AIP cont

Foods to eat
Limited research indicates which specific foods the AIP diet includes. A person following the diet may be able to eat:
any vegetables, except those from the nightshade family
high-quality seafood that are rich in omega-3 fatty acids
fermented foods
lean meats and liver
small amounts of fruit
oils, such as olive, coconut, and avocado oils
In general, the diet focuses on whole foods and those that do not contain additives such as sugar.

Foods to avoid
There are several food groups to avoid when following an AIP diet.
Little guidance is tailored to people with any specific autoimmune condition, but a study in people with IBS recommends avoiding:
nightshades, such as tomatoes, potatoes, peppers, and eggplants
grains
legumes
dairy
some vegetable oils
coffee
eggs
nuts and seeds
alcohol
food additives, such as refined or added sugars

Beginning the AIP diet. The AIP diet is very restrictive, so you may want to eliminate foods one at a time as your body adjusts. You can choose a category of foods – dairy, grains, nightshade vegetables, or processed foods – and eliminate one per week until you are following the AIP diet for autoimmune disorders completely.
Follow the AIP diet strictly for 30-90 days. When you’re ready, you may reintroduce foods one at a time to see how your body responds. For example, if you choose dairy, you might start with low-fat milk and drink a serving each day for three days. If you don’t notice a negative reaction, add other dairy products in phases.

Cons of the AIP Diet

The AIP diet is very restrictive. While knowing exactly what you can eat helps you meal plan, it may also be difficult to follow. If you go out to eat, there may not be something on the menu that fits your diet restrictions. If other people in your home are not following the AIP diet, you must be mindful of which foods in your house are safe and which ones aren’t.
You may miss out on vital nutrients. Cutting out whole grains means eliminating an excellent source of fiber from your diet. Cutting out dairy means removing your main source of calcium for building strong bones. Make a list of acceptable foods that fill these needs in your diet and be sure to incorporate them regularly.

and the last bit

AIP autoimmune protocol
The elimination phase
Cut foods & meds that cause gut inflammation, imbalances between levels of good and bad bacteria in the gut, or an immune response
NO grains, legumes or beans, nuts, seeds, eggplant, peppers, potato, tomato, eggs, & dairy
NO Tobacco, alcohol, coffee, oils, food additives, refined and processed sugars, and certain medications, such as non-steroidal anti-inflammatory drugs (NSAIDs) ibuprofen, naproxen, diclofenac, and high dose aspirin.
EAT fresh Salmon, Kale, Seaweed, Garlic, shellfish, liver/pate sardine, blueberries, minimally processed meat, fermented foods, &  bone broth. It also emphasizes the improvement of lifestyle factors, such as stress, sleep, and physical activity
The length of the diet varies, as it’s typically maintained until a person feels a noticeable reduction in symptoms. On average, most people maintain this phase for 30–90 days, but some may notice improvements as early as within the first 3 weeks

The reintroduction phase
Once symptoms improve being reintroduction. Avoided foods are gradually reintroduced into the diet, one at a time, based on the person’s tolerance.
The goal of this phase is to identify which foods contribute to a person’s symptoms and reintroduce all foods that don’t cause any symptoms while continuing to avoid those that do. This allows for the widest dietary variety a person can tolerate.
During this phase, foods should be reintroduced one at a time, allowing for a period of 5–7 days before reintroducing a different food. This allows a person enough time to notice if any of their symptoms reappear before continuing the reintroduction process
Foods that are well tolerated can be added back into the diet, while those that trigger symptoms should continue to be avoided. Keep in mind that your food tolerance may change over time.
You should repeat the reintroduction test for foods that initially failed the test every once in a while.

Step-by-step reintroduction protocol
step-by-step approach to reintroducing foods that were avoided during the elimination phase of the AIP diet.
Step 1. Choose one food to reintroduce. Plan to consume this food a few times per day on the testing day, then avoid it completely for 5–6 days.
Step 2. Eat a small amount, such as 1 teaspoon of the food, and wait 15 minutes to see if you have a reaction.
Step 3. If you experience any symptoms, end the test and avoid this food. If you have no symptoms, eat a slightly larger portion, such as 1 1/2 tablespoons, of the same food and monitor how you feel for 2–3 hours.
Step 4. If you experience any symptoms over this period, end the test and avoid this food. If no symptoms occur, eat a normal portion of the same food and avoid it for 5–6 days without reintroducing any other foods.
Step 5. If you experience no symptoms for 5–6 days, you may reincorporate the tested food into your diet, and repeat this 5-step reintroduction process with a new food.
It’s best to avoid reintroducing foods under circumstances that tend to increase inflammation and make it difficult to interpret results. These include during an infection, a poor sleep, stress, or after strenuous workout.
Additionally, it’s sometimes recommended to reintroduce foods in a particular order. For example, when reintroducing dairy, choose dairy products with the lowest lactose concentration to reintroduce first, such as ghee or fermented dairy products.

Here is a talk wtih Dr Jill Carnahan

cancer, diabetes survivor talking about Lyme disease

She is in Colorado in case anyone is interested, anyway I find her approach to be not only helpful but very supportive as she was a patient and so has some proper perspective



Wishing you all good health

Tj Jefferson wrote:Joylynn,

My mother was diagnosed with Multiple Sclerosis by her Neurologist. She had an MRI that showed what you would expect from MS, had lab studies appropriate for MS (including a lumbar punture/CSF), and had all the hallmark symptoms. She went from being annoyingly active (like she built a ceiling high stone wall the whole length of the house with three kids under ten), to sleeping in until 10AM, dragging herself to the store to restock the fridge with Totinos pizzas, and back to bed. Basically in the course of a year or so she had aged about 60 years. She was intolerant of heat, exhausted easily, and got weak very easily.

Wow! What a great story about your mother. I am still in the exhaustion state that she was in and I have been for nearly 10 years. I dropped my clients eight years ago because I simply couldn’t work and now I am up to working one day a week. I also tested negative about four times for Lyme disease. I found a naturopath who identified the problem as Lyme and his protocols Helped me dramatically. I thought any week I was going to be back to normal. In reality, it boosted me up a step or two but I was still nowhere near normal. I was recently diagnosed with fibromyalgia, which some in alternative medicine would say is actually Lyme disease.

Beyond the extensive fatigue… I lost my brain power… My executive functioning. I can do some complicated tasks but I get very confused at what used to be rote tasks - like making coffee, following a recipe, or having a normal chat with someone – my mind goes blank I get confused and don’t know what to do. I have found myself standing in the kitchen, realizing I had been standing there about 10 minutes thinking I was waiting for coffee but I hadn’t made any coffee…

It’s been a nightmare. One that no one understands. I’m used to being successful at what I do and I’m used to having a positive attitude and being the fun perky friend/ auntie. So I default to that even when I’m exhausted and people don’t understand when I have to cancel plans or when I refuse to make plans and just say it takes too much energy. “ Well you sound fine” Is what people think. Or I look fine I don’t look ill. It’s been a really long road for me. Is what people think. Or I look fine I don’t look ill. It’s been a really long road for me. After the fibromyalgia diagnosis, that opened some more medical doors that insurance would cover… Such as I’m currently taking part in water therapy with a physical therapist. That’s been surprisingly helpful. There’s a balance I have not been able to find. When you overdo with fibromyalgia you simply can’t recover no amount of sleep can restore you. I can be in bed for three days after one day of work. Or after one day of a family gathering. The water therapy is helping me understand the small amount of activity that actually makes me feel better and greater amount of activity really puts me under.

My heart goes out to anyone dealing with either of these issues. I have literally been so exhausted and in bed for so many days in a row at times that I seriously questioned why I was even alive. If you sleep 16 hours at night and then also take a nap during the day, When you can’t even walk your dogs anymore or even have the energy to take care of your own basic human needs…what amount of life are you even living? I am 58 and I lost my 50s to Lyme or Fibro or perhaps something else I haven’t identified.  I went through a sleep study and the NP said usually when you have all of these unexplained symptoms that the doctors can’t nail down a diagnosis, it tends to be more than one problem…that’s part of why the doctors are misled by the symptom set. Good luck to anyone struggling, I do not wish my world on anyone.

An old friend from High School was diagnosed with MS about 5 years ago. She decided to change her life and went on an AIP diet, to nobodies surprise she is still as energetic as ever. She even got a dog to go for walks to stay fit.

Its a daily struggle but she made me a believer

Paul Canosa wrote:An old friend from High School was diagnosed with MS about 5 years ago. She decided to change her life and went on an AIP diet, to nobodies surprise she is still as energetic as ever. She even got a dog to go for walks to stay fit.

Its a daily struggle but she made me a believer

That’s good advice, thank you. I am familiar with that – I went through natural cancer treatment program when I had melanoma skin cancer and the regimen was a similar diet as well as other lifestyle changes. With all of my fatigue and emotional exhaustion as well as physical, I let go of a lot of those good lifestyle habits. Too tired to care and it was just so hard to have discipline when I could barely think and function! However… I have been realizing that I need to go back onto the anti-cancer life and diet. I had a new spot appear that could be another type of melanoma ( Seeing doctor tomorrow). Maybe it will reset other areas of life and energy…

cynda williams wrote:Altho' this topic seems to be 3 years old, I will add my two cent's worth to the discussion on Lyme disease. I live in an area where deer ticks are rampant. Since I'm a gardener and work in an area known to have infected deer ticks (I have had at least ten infected deer tick bites), I take extreme care when going out to work in the gardens. I use a 25% Neem oil to 75% olive oil mix on my skin prior to dressing, being sure that my skin is coated with the oil.

I am the same… I have had chronic Lyme But I continue to garden and I have a Wooded property on the lake that is my joy. My sister has also battled chronic Lyme and can’t understand why I still want to go to the woods. I will follow your Neem oil advice. After going through a three month long protocol with a naturopath for chronic Lyme, and then  being reinfected, The naturopath advised me that the small amount of debt in bug spray it’s safer for me at this point than contracting Lyme again. This is very hard for me to accept since I am very natural and I have not used deet in about 30 years. However… I plan to use your name oil idea on my skin, and Deepwoods repellent on my clothes this summer. I did not find any tick or tick bites at the time I was reinfected with Lyme… So I don’t think you always know when to get treatment.

I wish you nothing but the best Susan.

If possible try to keep a positive mindset, I find meditation helps me purge negativity but please do whatever works best for you

I humbly suggest you avoid eating anything that comes from a box at the supermarket unless its real unprocessed food packaging such as oats or frozen berries for example

Studies show cancer loves sugar, but I'm not a doctor just sharing what I've heard and read

Susan Brill wrote:

Paul Canosa wrote:An old friend from High School was diagnosed with MS about 5 years ago. She decided to change her life and went on an AIP diet, to nobodies surprise she is still as energetic as ever. She even got a dog to go for walks to stay fit.

Its a daily struggle but she made me a believer

That’s good advice, thank you. I am familiar with that – I went through natural cancer treatment program when I had melanoma skin cancer and the regimen was a similar diet as well as other lifestyle changes. With all of my fatigue and emotional exhaustion as well as physical, I let go of a lot of those good lifestyle habits. Too tired to care and it was just so hard to have discipline when I could barely think and function! However… I have been realizing that I need to go back onto the anti-cancer life and diet. I had a new spot appear that could be another type of melanoma ( Seeing doctor tomorrow). Maybe it will reset other areas of life and energy…

Paul Canosa wrote:I wish you nothing but the best Susan.

If possible try to keep a positive mindset, I find meditation helps me purge negativity but please do whatever works best for you

I humbly suggest you avoid eating anything that comes from a box at the supermarket unless its real unprocessed food packaging such as oats or frozen berries for example

Studies show cancer loves sugar, but I'm not a doctor just sharing what I've heard and read

Thank you Paul, I agree!

Kathleen Sanderson wrote:Auto-immune diseases seem to run in our family.  

My mother has celiac disease, fibromyalgia, Sjogren's syndrome, arthritis...

I have celiac disease, fibromyalgia, Sjogren's, arthritis, psoriasis, metabolic syndrome ...

My oldest daughter has vitiligo; her oldest daughter also has vitiligo....

My youngest daughter has celiac disease, vitiligo, lupus, Sjogren's, and is autistic and mentally retarded....

I am absolutely certain there are more issues with other family members, but these are the ones we know for sure.  

I can mostly keep my symptoms under control with diet and a few supplements, especially Vitamin D3.  My youngest daughter lives with me (she's 38, I'm 61) and we mostly follow the auto-immune protocol diet.  She also takes a generic zoloft to help with the autism, and a generic Plaquenil for the lupus.  We still struggle to keep her healthy and feeling good, and she absolutely has to avoid prolonged exposure to the sun (prolonged being more than a few minutes). I also have to be really careful about anything that is going to stress her -- moving from Oregon to Kentucky last spring was a tremendous stress and she's just now beginning to recover from that, almost seven months after the move.  Vitamin D also helps her a lot.  I had her taking diatomaceous earth for a while and I think it was helping her, too.  I need to get her back on that.  Caring for her is complicated by the fact that she doesn't communicate very well (she does talk a little bit, but not well).  

Kathleen

Keep a close eye on the plaquenil, it was prescribed to me for my autoimmune problems and I now have permanent blurry vision in my left eye from it.

Kathleen Sanders – I’m curious to know why you listed vitiligo in your family - do you consider that an autoimmune condition? I have vitiligo, which caused me a lot of embarrassment and emotional issues as a child, but doctors always acted like it was just a cosmetic issue and nothing to do about it. As an adult, I have had Lyme disease and been diagnosed with fibromyalgia - with chronic fatigue symptoms. It’s extremely debilitating and I have not been able to work,  except very part time, for about eight years. I am wondering if vitiligo is a marker or early warning of autoimmune illness? I’m Interested to know any knowledge you have about this… i’m 58 so it was 30 and 40 years ago that I was looking into causes. At that time they said it could be caused by shock or a trauma, it could be a vitamin B deficiency (or evidence that your body does not properly make use of vitamin B), or hereditary. I am very fair skinned so if I simply remain out of the sun, the vitiligo is subtle. But when I was a child playing outdoors I would tan nicely where I had pigment but had very large  “albino” splotches all over my feet, up my legs legs and on my stomach that are (mostly) symmetrical on my body. I also developed melanoma skin cancer 10 years ago,  likely from so many terrible childhood sunburns - without pigment more susceptible to the radiation perhaps.

Kathleen Sanderson wrote:Auto-immune diseases seem to run in our family.  

My mother has celiac disease, fibromyalgia, Sjogren's syndrome, arthritis...

I have celiac disease, fibromyalgia, Sjogren's, arthritis, psoriasis, metabolic syndrome ...

My oldest daughter has vitiligo; her oldest daughter also has vitiligo....

……

Kathleen

Kathleen, (I apologize if this is a repeat. I tried to post a reply before I was signed in and I can’t find where it posted. Here’s the gist – ) you listed vitiligo with your family’s auto immune illnesses. Do you consider vitiligo to be related to autoimmune disease? I have extensive vitiligo that caused me a lot of embarrassment and issues as a child. It’s all over my feet, up my legs and on my stomach in a symmetrical pattern, random spots elsewhere as well. I am fair skinned so as an adult if I stay out of the sun it’s subtle, but as a child My skin would tan where there was pigment so I appeared like a “wild cat or a burn victim” depending on who was commenting. :-/. (I had almost forgotten how traumatic it was for me until I am recalling it now .) As an adult I have recently been diagnosed with fibromyalgia – I have not been able to work regularly for the last eight years because of fatigue and brain fog. I was treated for chronic Lyme disease A few years ago by a naturopath but still could not function. I was diagnosed by a rheumatologist with fibromyalgia recently. I am 58 so my research into vitiligo was 20 and 30 years ago. I’m curious if there is an auto immune connection. I also was diagnosed with melanoma 10 years ago but have not had a recurrence (I followed a very strict natural cancer treatment program for about three years. I attribute that to surviving the first bout and not having a recurrence). I assume with vitiligo and multiple Severe child sunburns in the 1970s before we knew that much about sunscreen, that I was quite a candidate for melanoma… i’m interested in any perspective you have on an auto immune connection with vitiligo.

Hello

I have vitiligo as an adult which my Doctor told me isn't unusual for people with Auto Immune diseases.

His suggestion at the time was to treat the symptom on the epidermis, however once I modified my diet the vitiligo didn't progress and actually faded in some areas.

I always try to remember that the epidermis is the largest organ in our body, so treat it with loving kindness and she will repay you with stellar looking skin. Sleep is also an important factor in keeping healthy

Susan Brill wrote:Kathleen Sanders – I’m curious to know why you listed vitiligo in your family - do you consider that an autoimmune condition? I have vitiligo, which caused me a lot of embarrassment and emotional issues as a child, but doctors always acted like it was just a cosmetic issue and nothing to do about it. As an adult, I have had Lyme disease and been diagnosed with fibromyalgia - with chronic fatigue symptoms. It’s extremely debilitating and I have not been able to work,  except very part time, for about eight years. I am wondering if vitiligo is a marker or early warning of autoimmune illness? I’m Interested to know any knowledge you have about this… i’m 58 so it was 30 and 40 years ago that I was looking into causes. At that time they said it could be caused by shock or a trauma, it could be a vitamin B deficiency (or evidence that your body does not properly make use of vitamin B), or hereditary. I am very fair skinned so if I simply remain out of the sun, the vitiligo is subtle. But when I was a child playing outdoors I would tan nicely where I had pigment but had very large  “albino” splotches all over my feet, up my legs legs and on my stomach that are (mostly) symmetrical on my body. I also developed melanoma skin cancer 10 years ago,  likely from so many terrible childhood sunburns - without pigment more susceptible to the radiation perhaps.

A particular line of my maternal family has a long history of terrible arthritis in their hands (like, the tops of their fingers bending sideways, intense pain bad). IT's gone for at least three generations (mom, grandmother, great-grandmother). My uncle, who also has it, started a gluten-free diet which he found helped, so my mom started it and she has had a remarkable recovery. The swelling on her fingers has subsided remarkably, and the pain has decreased dramatically. There is still damage from the years of arthritis, and her grip is still weak, but she absolutely swears by the diet now. Interestingly, I've done 23andme and according to them, I have one of the variant genes that predisposes people to Celiac disease. I'm wondering if that would be a reason for the arthritis in my family.

Interestingly, the same family line also has a history of depression and anxiety, it would be interesting to know if there is a connection (though the depression and anxiety starts at a very young age and the arthritis doesn't show up until later).

Knowing all this, I probably should go gluten-free myself as a preventative measure, but I am far too addicted to wheat products and my hands don't hurt yet. I am trying to work more sourdough and whole-grain wheat and home-baked goods into my diet instead of processed goods, in the hopes that that helps (though considering my great-grandmother and her siblings had arthritis I would be doubtful if modern food is the cause).

Relatedly, I recently read "An Epidemic of Absence" by Moises Velasquez-Manoff, who posits that the rise of autoimmune disease may be caused by a lack of helminths (parasitic worms) in people. He makes a compelling case, but again, my family history makes me wary of that conviction. After all, my great-grandmother was one of 11 children who lived on a farm - the very kind of people the scientists quoted in the book say should be protected by exposure to helminths and other microbes. My grandmother was one of four, but lived in a community with close contact with various cousins, and also on a farm. My mother was one of five and she grew up on Navy bases around the world, running around barefoot in the Philippines, and has distinct memories of being treated for worms.

It's anecdotal, of course, but it makes me think that there is something more to autoimmune disorders that simply the absence of helminths, or the presence of certain things like gluten. So I figure that I will do my best to eat real, whole, local foods, and dig in my garden when I have a chance. And if/when I start getting arthritis, as is likely, I know to go for a gluten-free diet and/or try the autoimmune protocol diet.

from my studies , which including listening to any doctors and scientists, that have been pushed away from the forefront, the cause is usually vaccines. the host culture goes through a filter, but th edna gets fragmented. when this is added to the nano particles of metal and goes through the blood brain barrier, the brain attempts to figure out what its supposed to fight..often ties its your own body. Anti  inflammatory lifestyle is the best solution.. we've been experimented on our whole life and their is a consequence . you mean nothing to the medical establishment  

Ben Child wrote:from my studies , which including listening to any doctors and scientists, that have been pushed away from the forefront, the cause is usually vaccines. the host culture goes through a filter, but th edna gets fragmented. when this is added to the nano particles of metal and goes through the blood brain barrier, the brain attempts to figure out what its supposed to fight..often ties its your own body. Anti  inflammatory lifestyle is the best solution.. we've been experimented on our whole life and their is a consequence . you mean nothing to the medical establishment  

Umm, did you miss the part where I talked about how my great-grandmother had terrible arthritis and that it's so inheritable that it probably went back generations before her? They weren't exactly giving rural Pennsylvanians regular vaccinations in 1900.

Also, since everything I want to say about vaccine conspiracy theories would probably get me thrown out of the forums, may I politely suggest that is a topic better suited for the cider press.

bernetta putnam wrote:any suggestions on natural way to help RA?

I have an outdoor shower.   This Spring, I got dive-bombed by a wasp who built a nest under the drain floor.   It was a few minutes before I could get back inside to treat two stings, one on the back of my neck and one on my wrist.  By that time, they had formed welts.

Fast forward two days and all of my RA symptoms vanished.  Mobility returned to my hands and knees. Not only was the binding stiffness gone, but I had zero pain.   This lasted for over 2 weeks, but diminished soon after.   So I Googled it.   Sure enough, wasp strings are known to relieve RA.

Not my favorite treatment, however.   I removed the nest.  

As an aside,  I found that a TENS electric current directed at the site of an insect sting will lessen the spot from being quite so achey.

evanggelo mitchell wrote:
These are some of MY main points from the Medical Medium's work; there are more, in fact, his books are incomparably "dense" with medical knowledge.

Hi Evanggelo,

Thank you for wishing hope to everyone seeking recovery.  The search is real!

In my recovery, I'm discovering that the most effective medicine so far is anything that I believe will help me.   In other words, research has shown that placebos are the most effective of all medications.  Do I still take medicines?   Yes, because I haven't figured out -- yet -- how to activate my own placebo response without them!  I try to be very careful about where I place my beliefs in order to minimize harm while I heal.

I researched the MM you recommended and found this:

https://abbylangernutrition.com/the-medical-medium-cleanse-spirit-or-scam/

Medical knowledge is a tricky idea.   From what I have observed, we make best guesses and then try to find a way to repeat results, while distinguishing which actual thing brought the results.  So much of our marginal medical knowledge makes connections by observing things that are associated but not actually related.  Sometimes that leads to discovery and other times to toxicity or nothing.  

I continually struggle with keeping my wishes separate from my perception of causes and effects, especially related to my struggles with maintaining health.  Many well-intentioned alternative providers have delayed my actual progress and clarity, as have regular old doctors.

Stay curious.  I wish you well!