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Understanding Lyme, and Autoimmune Diseases

 
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I have started a private forum to discuss symptoms, possible treatments, and perhaps just venting the frustrations having to do with Lyme and Autoimmune Diseases. This forum is in a section of Permies that is hidden from Mr. Google, so you will be free to share your experiences while retaining your privacy.

I have started this forum because I would like to understand more about these conditions. If you would be interested in sharing your story, successes and failures, or just learning from others, please join our conversation.

The publishing policies of Permies will apply in this forum. I have made space for this forum in my virtual kitchen, and I reserve the right to remove people from my kitchen who are unwilling to follow those publishing policies. If you wish to join us, just PM me and I'll add you to the list.
 
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Hi,

So I thankfully don't have lyme,  but I did have eczema and allergies.  I was told I had to live with it and it was something wrong with me.  Some friends told me to try an elimination diet for the eczema.  I lasted about a day,  but in that time I noticed a difference and then just watched as I tried different things.  I ended up narrowing it down to non-organic grains. I later added to that non-organic potatoes. It's a pesticide thing.  The same pesticides they use in lawn care, mostly during "high allergy" season. It took about a year before my allergies were significantly less- mostly now when I go on repeated weeding sprees, because plants do conduct chemical warfare. I cheat a little now (a morsel of brownie), but I also know more of what crops are most sprayed, based on my reaction and research: heavy gut, tired, a feeling like I'm getting sick, itchy skin, etc.

I thought it was just me being a runt growing up,  but now I see many many people in the same boat, so I share my experience when opportune so others hopefully don't have to spend  several decades of their life thinking they have a problem they have to live with.

Good luck!

 
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In the next few weeks (I've been told) several papers will be published showing links between mineral content of the foods we eat and aspects of many of the autoimmune diseases.
Currently there is a group of patients at UAMS in the research department participating in a Lyme disease study, if I can find out their parameters I'll post those here.

Redhawk
 
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Joylynn,

I am not immediately affected, and I can tell you there is a reason I almost didn't click on this (to stay out of trouble with Paul), but this is something I have familiarity with.

First, I am not an Immunologist, although I have studied it in gradual school. That being said, you have picked two things that bedevil traditional medicine. This makes it interesting.

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.

So as a family we made peace with her likely demise. It is partly why I am so nonmetaphorical about death, we lived with it as a near and future event. They told us she had a couple years as she had the rapid progressive type. About two years later she was literally giving stuff away. Not only was her body worn out but she was ready for the end of life. She met a Hematologist in the hall of her Neurologist, they were getting ready to start interferon treatment, which basically destroys the immune system, especially the early ones. Anyhow, the Hematologist said he had just gotten over MS. This is a board certified, real doctor hematologist.

Her ears perked up, and pretty quickly she got tested for Lyme by Western Blot and ELISA, which are both dependent on a functioning immune system. She was negative. At the time there was no approved other tests, only one kinda sketchy sounding outfit in Texas that had a panel of direct immunoassays, but not approved. This was in the early days of the internet, and I was a little baby hacker with a modem, so Ii did some research on Gopher and some other defunct platforms to find out what I could. There wasn't much, other than the word of this Hematologist, who had basically been wheelchair-bound for a year until six months prior. We were not affluent people, but we found $300 for the test from the sketchy Texas place. It was positive. The she paid out of pocket for a med port, and gave herself IV antibiotics for six months, also paid for out of pocket. The Hematologist has converted his whole office toward this disease constellation, and was not running it at a profit, he had what is called own-occ insurance, so he was considered disabled and didn't need the money.

She is back to being annoyingly energetic. It has been 22 years, and she has been out working with us in 90+ heat. This does not happen with MS.

Either her initial diagnosis was incorrect (and it is the same diagnostic criteria now I believe), or antibiotics for Lyme cured her MS. I can't explain it. I thought about going to medical school and picking up where this hematologist was leaving off, but he ended up dying of a heart attack (downer) while I was in college. He had reams of research, all on paper, and we tried to make sense of it. Not everyone improved, by any means. But there is a subset of people who seem to have Lyme or another sneaky bacterium that basically cause immune havoc to evade detection.


That's the story. My mom is a country bumpkin by choice. She has a PhD in Biochemistry and was a professor at the time. I have been reluctant to blow off some crazy cure claims I have heard after that.

The sketchy Texas company is now a real deal. They have been instrumental in identifying the other tickborne illness. And by and large you still have to pay to get the test done, but you can go on immunosuppressives for 10k/year and no one bats an eyelash.
 
Tj Jefferson
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In the next few weeks (I've been told) several papers will be published showing links between mineral content of the foods we eat and aspects of many of the autoimmune diseases.  



Dr Redhawk,

This makes sense to me. Specifically I would bank on zinc being the big player due to the ubiquitous nature of zinc finger moieties in immunology, but copper and zinc are comingled greatly. It has been a long time since I read scholarly stuff on this.

Ironically, my mom's PhD dissertation was on zinc deficiency in immunology. She also started taking glacial rock dust orally at the same time, but I think the absorption was minuscule based on what you have posted on the minerals of late. Now she takes a complexed mineral supplement (from a US company with US feedstocks), so that could have played a role too.

Anything you can dig up I would be interested to read.
 
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Glad to see this topic.  I could go on for hours about both Autoimmune Diseases (AD) and Lyme from a personal perspective.  I'm in my early 60s now but have had medical issues that are either related to or directly caused by AD.  In my youth, I had several episodes of abdominal problems which led to hospitalization.  Then as a young adult, my problems increased and soon I was diagnosed as having Colitis or Chrones debated by the Drs I had seen.  The problems worsened to the point that I was constantly passing blood and an exam showed that my colon was cancerous and fully involved so I had a total Colectomy and now have an ileostomy.  The surgery lasted more than 27 hours with surgeons spending time tying off thousands of blood vessels that had developed to feed the cancer.  They ultimately abandoned the surgery leaving me with a rectal stump which was less involved than the majority of the colon they removed.  Over time this has been monitored and healed.  At the same time this was happening my bloodwork showed my liver was also failing.  I traveled to the University Hospitals in Pittsburg at the time the premier place for liver diseases.  They did a full workup and sent me home saying that I would ultimately need a liver transplant as a result of PSC.  Less than a year after the colon surgery my liver numbers where at the point my Drs couldn't understand how I was continuing to function, I was still working 50+ hours per week when they told me anyone else would be laid up in the hospital waiting for their transplant.  I'd been listed for a transplant about 7 months when I was told I was at the top of the list nationally based upon the numbers from my bloodwork.  My skin was a putrid orange and my eyes glowed yellow like some freaky Halloween monster.  They kept telling me I had only a short time to live unless I got a new liver.  I received my transplant at Froedtert Hospital in Milwaukee Wisconsin in early July of 1999.  As a result I've taken immune system suppressant drugs ever since to prevent my body from rejecting the new liver.  In the weeks and months that followed I had several follow surgeries to address poor blood flow to the new liver.

About 18 months after my transplant follow up tests showed I had lesions growing in the biliary tracts.  Biopsies showed it was cancer and something had to be done about it.  My Drs suggested an off-label treatment that was being used in Europe for esophageal cancers, the procedure known as PDT (photo dynamic therapy) involved using a drug that would be administered by IV and over 24-48 hours it would collect in my skin, eyes, and in cancer in my bile ducts.  They then passed a flexible laser into the ducts and exposed the cancer to a specific wavelength of light.  Forty eight hours later they scoped the bile ducts and were amazed to find healthy pink tissue, the cancer had been eradicated and sloughed away.  For the next two months while the drug remained in my system I had to keep myself totally covered from head to toe and wear super dark sunglasses anytime I was near sunlight.  I would be uncovered indoors because the incandescent light did not contain the specific wavelength of light that would trigger the drug they had given me.

A few years later the cancer returned and they repeated the PDT once again and I've been clear of cancer in the ducts ever since.  However following the second PDT treatment my platelet levels started to fall.  They plummeted to the point that they had to had count them because the diagnostic equipment failed to find any.  My Drs tried several treatments to address this but in the end I was given Immunoglobulin and it finally stopped my body from destroying platelets they were giving me via IV and over time my body started building up my platelets on its own once again.  This occurred twice more before the Drs found a correlation between this Idiopathic thrombocytopenic purpura (ITP) and me getting Heparin for a medical procedure.

Several years passed and follow up scans revealed I had a lesion on my left kidney which turned out to be cancer.  My Drs froze about the lower 1/3 of my left kidney to eliminate the tumor.

Again several years passed and I started to feel palpitations and I tired easily, this was diagnosed as a result of Atrial Fibrillation and medication was added to address this issue.

This past November while working I noticed I would tire easily, things deteriorated to the point while at work one day I'd have to stop and sit down after taking only a few steps and I would not catch my breath.  I was taken to the hospital and told I had a heartbeat of under 30 bpm and that they would be inserting a temporary pacemaker while trying to determine the cause.  They never found a definitive cause, suggesting that I had doubled up on my meds related to the Afib.  I was certain I had not because I have a weekly pill dispenser case that I use and it was not missing any extra doses.  They implanted a permanent pacemaker the next day.

Then in mid February of this year I developed terrible migraine headaches, ear pain, and dizziness that lasted for more than a week and did not improve with medications provided by my doctors.  The ear pain increased and I experienced hearing loss.  My doctors tried high dose steroids, antifungals, antivirals and nothing helped.  Ultimately I was referred back to Froedtert (the regional teaching hospital and level one trama center) where I was admitted and they repeated many of the same tests and tried a combination of multiple IV drugs in an attempt to remedy my issues.  The barrage of blood tests they did yeilded no real results.  Ultimately the infectious diesase team concluded that on the panel for Lyme Disease two of the five results came back as positive.  They typically look for all five as positive before concluding the issue to be Lyme Disease but they hypotesized that due to my liver transplant and the drugs I was taking the results were to be construed as positive for Lyme Disease.  I'd had no sypmtoms related to a tick bite or Lyme Disease but that is their determination.  They had taken spinal fluid for testing during this same time and the results showed that I had meningitis as a result of the Lyme Disease.  They continued to treat me with various combinations of antibiotics and other drugs but my hearing loss and vertigo continued to get worse by the day.  They exhausted all available drugs in an attempt to deal with my illenss but finally stopped when nothing brought positive results.  I've lost all hearing in both ears and over the last 6 months my vertigo varies day by day.  Sometimes I find it impossible to walk without aid, other times I've able to concentrate and work just fine.  A distraction however will cause me to lose my balance and I'll have to catch myself.

Its been six months and I have seen no improvement and my Drs do not hold out any hope for either my hearing being restored or my balance returning to prior levels.

This is a quick summary, I'd be happy to go into greated details if anyone is interested.  I'll be eagerly watching this thread for other posts.
 
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David Buggs you should get survivor of the year award! What an incredible story!

My mom died of scleroderma recently, most fortunately it was quick because it was not one of those autoimmune diseases which you wish to last long.  From diagnosis to the end it was less than three months.This caused me to take a renewed interest in this whole class of diseases. Thought you might find this article interesting:   https://returntonow.net/2018/09/04/were-not-gluten-intolerant-were-glyphosate-intolerant/

Though I have no science to back it up I suspect that also depriving our body of the necessary microbiology is probably part of the imbalance. I mean, the one imbalance feeds into the other until it becomes pathological,  Simple things like chlorine in drinking water is enough to severely damage the gut microflora.

 
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Two Decembers ago I developed low-grade fever and lethargy for no apparent reason. When a rash (not a bull's eye, just a nebulous rash) appeared on my belly, I arranged a visit to the doctor who, after conferring with another doctor, decided to put me on a 21-day doxycycline regimen. Hours after returning home, the rash had quadrupled in size; but after only two days of treatment, my health was restored. (I did take the antibiotic for the prescribed 21 days.)

Two weeks later (January, now), I found another embedded tick. So, back to the doctor, but this time only a few doxycycline capsules were necessary (possible if treatment begins within 72 hours of the bite).

Since then, both my wife and I have had several (summertime) encounters with lodged ticks. I now religiously spray myself with DEET before going out to scythe, and baths followed by thorough tick checks are the rule for the grandchildren.
 
master pollinator
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I have a similar story to David Buggs though so far there is not much help (18 months) as to what is causing my severe fatigue. Cancer does not help that is for sure, but at age 44 I should not be this tired. I am nearing the wrong of a shotgun on this one. I have been tested for everything, once having (14) vials of blood taken to be tested at once! Nothing came up short.

I have no confidence in my Endocrine Dr because she is not reading my charts. I know this because after having a Thyroid Removed (cancer all through it), there is a 1-3% chance that a patient will never be able to regulate their calcium and D3 levels again. I suggested I was one of the 1-3%, she dismissed it saying I was only "slightly low." I countered with, "yes, but if you look at the medications I am taking, I am also taking 6,000 IU's of D3, and chugging calcium 3 times a day and am still low. How low would I be if I did not take 3 times the recommended allowance?" She should have seen that. (Normal intake for those lacking D3 is 2,000 IU's)

There is a unique pattern though...my Pituatary Gland is shot, I have incredibly low testosterone, I have no energy, my Thyroid was cancerous, and my cholesterol is through the roof at 330. My Doctror's say they are all seperate issues, but I do not believe in coincidences. The one common denominator is Mitocondrial DNA.

On Permies...I won a book on herbal remedies and was reading through the Endrocrine System and the author had a paragraph describing exactly what I had, saying that it was low cortisol levels, but that it would not show up with testing. Ultimately it is something called Chronic Fatigue Syndrome, and that is what I think I have, contracted when I got a burn that resulted in an infection that was almost untreatable to antibiotics. For weeks I endured pints of Vancomyacin twice a day or risked amputation/death. I believe the strong antibiotic, while it saved my arm and my life, also did damage to my Mitrocrontial DNA which regulates energy (hence why my cholesterol is high).

Sadly Chronic Fatique Syndrome is misunderstood, and scoffed at by the medical profession. Myself, I do not want the uncurable disease, I just want to know what is wrong with me. I have endued this for years, been seeking treatment for 18 months, it has just been plain hell.
 
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A quick question to those who may have more information regarding Lyme infections---the following from the Mayo Clinic website:

"Lab tests to identify antibodies to the bacteria can help confirm the diagnosis. These tests are most reliable a few weeks after an infection, after your body has had time to develop antibodies. They include:

Enzyme-linked immunosorbent assay (ELISA) test. The test used most often to detect Lyme disease, ELISA detects antibodies to B. burgdorferi. But because it can sometimes provide false-positive results, it's not used as the sole basis for diagnosis. This test might not be positive during the early stage of Lyme disease, but the rash is distinctive enough to make the diagnosis without further testing in people who live in areas infested with ticks that transmit Lyme disease.
Western blot test. If the ELISA test is positive, this test is usually done to confirm the diagnosis. In this two-step approach, the Western blot detects antibodies to several proteins of B. burgdorferi."

My question is this: I understand that it takes a few weeks for the immune system to generate sufficient antibody to be useful in the Western and ELISA tests, but how long will the circulating antibodies remain in this abundant state?  Can you get tested one or more years after infection and still have sufficient antibodies present for detection of that prior infection?  Thanks!
 
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TJ's post echoes Stephen Harrod Buhner's assertion that Lyme disease is grossly under diagnosed.   I am working through his fantastic book.  He has to be the world's top expert on the subject, he has read billions (not true but I can't remember the astronomical amount) of peer reviewed papers on the subject and has helped tens of thousands of people with Lyme.  He is an herbalist but does not decry antibiotics.  Book will be worth the purchase if you are dealing with Lyme or if you, like me, are an interested medical professional and/or herbalist.  "Healing Lyme: Natural Healing and Prevention of Lyme Borreliosis and Its Coinfections"
 
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There is a man named Dr. Morse who has been teaching people for over 40 years how to detox all manner of ailments from their bodies.  He can be found on youtube.

I recall quite a few videos and testimonials of people who used fasting to get rid of Lymes.  I seem to recall that it was dry fasting that had the most impact.  Dry fasting is pretty much at the apex of detoxing the body.  It would be unwise to jump straight into dry fasting.  It would be much wiser to eat cleaner, and perhaps use smoothies, then juice feast, then dry fast.  Notice I said juice feast, as in drink a lot of juice, up to a gallon or more per day.  I prefer this over fasting because you are literally flooding your body with, "goodness", that cleanses and heals, while still being able to function.  John Rose on youtube talks quite a bit about juice feasting, he has some good videos on the topic.
 
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This episode of Remedy is totally dedicated to Lyme disease (his son caught it during the filming of the series and has been cured using the techniques in this episode!

Only up for today!!!

https://remedy1.thesacredscience.com/episode5apl

Hope it helps
Lucy
 
Bryant RedHawk
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hau John, you pose a most interesting question about the longevity of antibodies in the blood stream.
The answer is sort of two fold, there would remain a high quantity of antibodies for as long as the infection was present, then they would decrease to a level (latent supply) where though always present, a second infection would need to occur for a rapid build up from the latent supply.
 
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I've never been tested myself for Lyme disease but since birth was born with Lupus and since a child on wards things progressed one after the other down the years, now at 50yrs old I carry over 10 autoimmune diseases SLE / SCLE of the skin which loves mimicking other health conditions / Secondary Sjogren's syndrome / Scleroderma / Raynauds phenomenon / Antiphospholipid syndrome  the list just carries on.


Every day I wake to thinking what's the point I take chemo meds and anti-malerial besides Naids and have recently been told I have MCTD.
 
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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
 
Gail Dobson
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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




Hello Kathleen, my heart goes out to you and your daughter besides family members with these autoimmune diseases knowing the pain they put we through and living a life on what you can't and can do gets so flustrating and these are genetic conditions as my youngest sister as Lupus and Rosacea of the skin both her and my eldest sister who lives abroad have Osteoporosis which comes from the genetic's of my dad where I have Osteoarthritis which my dad had and my mom had RA and Diabetes.


I do hope adjusting comes better for your daughter :) and she's like me concerning the sun any exposure to the sun and I burn plus the pigmentation from Lupus from birth caused me to be born with olive skin which doesn't help. I was tested for Celiac disease but they came back negative and I have Chronic IBS and don't I know about it.


If you don't mind me asking have you been tested for Lupus because once you have Sjogren's or Lupus...either one follows the other and usually Raynauds with it.


Having psoriasis like yourself got me diagnosed from the start as it was mimicking ringworm, then more tests was done and confirmed but my latest Rheumo as told me he can't help me with to much involved and as put me over to a MCTD specialist who I see next month.
 
Joylynn Hardesty
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Just to remind everyone,  if you wish to join us in the private forum, just PM me and I'll add you to the list.
 
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any suggestions on natural way to help RA?
 
Travis Johnson
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Just an update on my own health: I have a new primary care physician, but we are still trying to figure out why I am so fatigued. The new Dr put me on a medication that makes me sleep at night, but its still not working well (I get up at 3 AM still) and am napping throughout the day.

I got a new book on the Endocrine System and gives a holistic therapy to curing all my symptoms, BUT I am not sure that it will work because I have three problems:

Cancer of the Thyroid (removed)
Lymphoma
Pituatary Destruction on the brain side

The book talks a lot about underdiagnosed thyroid problems, but in my case I have no Thyroid and no Pituatary Gland. I am beginning to wonder if I have Pituatary Cancer which is extemely rare, but if anyone would get it, that would be me. :-)




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



There is a woman named Hilde Larsen whom you can find on youtube, she also has a website, and a few books.  She had RA so bad that she was bedridden.  She eradicated the RA naturally with food and herbs.
 
Kathleen Sanderson
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I keep my RA under control with the auto-immune protocol.  It works extremely well, especially when I'm careful not to eat a huge amount of carbs.  

Kathleen
 
Travis Johnson
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The book I have is by Aviva Romm, MD called the Adrenal Thyroid Revolution. I could not get the name when I posted earlier because my wife was sleeping (funny how normal people can sleep at 3 AM), and one of the bad things of a tiny house, is being unable to move around without waking family members.

I have not read enough of the book though to say whether it is a good book, much less if it is applicable for my situation.

In some ways it should be; while I do not have a active pituatary gland and my thyroid has been completely removed, I am taking synthetic replacements for those functions, but on the other hand, not a lot of people have a non-working pituatary gland AND cancerous thyroid spreading to the lympthnodes.
 
Gail Dobson
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bernetta putnam wrote:any suggestions on natural way to help RA?



I'm being tested for this Bernetta as my mom had it but this link below may help you
 
bernetta putnam
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Thank you all for the replies.
I'll look for that YouTube video.
Gail, what link?
 
Gail Dobson
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bernetta putnam wrote:Thank you all for the replies.
I'll look for that YouTube video.
Gail, what link?



Sorry bernetta i haven't got a clue what happened to it but i did add one for you...hopefully you get it :)

https://www.healthline.com/health/remedies-rheumatoid-arthritis#taichi

 
bernetta putnam
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np thanks for the link.
 
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I ran across an article discussing curing malaria by ingesting dried and powdered sweet wormwood leaves.  In the article it mentioned that it might also be effective for lyme disease.  A friend of mine died from complications from lyme and another friend has also just been found to have persistent lyme.  I was doing some digging this weekend and found this article talking about results of studies at Johns Hopkins that have found specific herbs that can eliminate the Lyme bacteria

Seems very hopeful.    

 
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