My trip to Mexico

[vinny]

The real significance of this trip is far greater than the pictures show.

I am sharing this because it is so huge. It is very exciting and we tend to share a lot more than just wine making, but there has to be one person on here, or a family member or friend, that will benefit from this story.

I have alluded to some things in my posts, not being able to eat beef, and I did a whole thread on chemicals in wine, but I have glossed over much of my reality. When I was 27 I got the dreaded tick bite. I can only pin point that time frame by tracking symptoms, I never noticed the bite. I got neurological issues first, Migraines, involuntary movements and muscle twitches, stabbing pains in my muscles, and as the years progressed I got more and more random symptoms.

I saw a few dr's and every test came back clear. I was never given a hint that there could be anything other than random genetic traits that caused my inconvenient little issues. Moving forward 10 years with little symptom after little symptom I was completely unable to function. I was in constant pain, I had physical reactions to everything. I couldn't wear deodorant, I would get a rash. Gas fumes, or any chemical, would give me a migraine. I got dizzy spells. One day I was driving down the main road in town and the world turned upside down. I had no bearing on anything. I was luckily rolling through a light as it turned green and just kept it straight until it passed.

After that I wouldn't drive.

At my worst I was very angry and confused. I would completely lose words, simple things like the name of that thing out there... The building? Yes, thank you! I would be talking about Edmonton and say Vancouver, and then during a conversation my mind would completely wipe and I would have no idea what we were talking about.

I found a Dr. in town and wrote down everything I could think of, when this started or that. He laughed and asked why I wrote it all out. Well, I couldn't remember or articulate my point. I got some blood work done, and my liver levels were through the roof. His professional advice. Stop drinking. Nothing more. I asked to see a rheumatologist because fibromyalgia was the only thing I could find that checked any of the boxes I was experiencing.

I was diagnosed with fibromyalgia and then ignored by the medical system, even thought the rheumatologist was holding two positive Lyme tests. He said he didn't know what they meant. I was offered a pamphlet to a support group because there is no known cause or treatment.

We saw a post of an acquaintance who was dealing with Lyme on Facebook around the time of the first visit to the Dr. That got me on track. I found a Lyme literate naturopath and got an appointment. The only MD I could find was a 6 month wait. We sent blood samples off to Germany and it came back positive for Lyme. I went back to the Dr. and got a lyme test thinking being in that system I would get more support. It came back positive, but was ruled abnormal/negative because Lyme is not considered to be prevalent in Alberta. I was in BC when I got bit, but I only include this to demonstrate how hard it was to identify the cause. Once I knew it was Lyme, I pretty well spent the next year on the couch doing treatment protocols of some sort and looking for the next miracle cure. The next two years were very slow increases in function and this April will be 2 years since I moved to Edmonton for a month to do ozone treatment. When I came home I was at 90%.

We were on year 10 of our 3 year plan to put in a house and decided to fast track it. Prices were skyrocketing. I went back to my regular self, working long hard days. Clearing trees, moving dirt, digging well and power trenches, rerouting septic lines, etc etc. For the last 16 months I have been getting more and more symptoms back, and I have been completely unable to figure it out. 6 months ago I went on the auto immune diet, which eliminates the foods most common for upsetting the immune system. As inflammation drops you are supposed to add food back in. I started reacting to more and more things instead of getting less sensitive.

I decided to retest and see where I was, if Lyme had not been eliminated, or if I had missed co-infections. About a week later I found DNRS. I saw a success story of a young man that had Lyme. He was unable to walk or function at all. He managed to push the infection back, but like me he had lingering issues he couldn't move past. DNRS is a neural retraining process that uses the principles of neuroplasticity to rewire the neural pathways in the brain.

It turns out that with at least a 15 year infection my body locked itself in fight or flight mode. My brain had 'written' so many associated pathways with illness that although the infection was removed or reduced it still associated the threat to those items. This included my behaviours as well, as the symptoms really piled on while I was developing my property and building a business. Long hours and stress piled on an already floundering system. As I continued to work hard on the house I began to trigger old pathways and reactivate the stress response of the brain.

Since starting DNRS on Dec. 5th I have eliminated most of the food issues. My energy levels are up. If I get a migraine it is minor and short lived where before they would keep me in bed all day, and bad ones have made me consider a trip to the ER.

So obviously for me this is great. If you are limited by food restrictions you can't travel, and here I am only 2 months later. But, this is not just a Lyme thing. The pandemic was so overwhelming with the isolation and restrictions, for some people that was enough to set this off. They call it long haul covid. Chronic fatigue, fibromyalgia, IBS, Chrones disease, mold illness, balance, anxiety disorders, depression, chemical sensitivities, electromagnetic sensitivities, and food allergies are a few off the top of my head. The list is long. My understanding is that celiac disease is one of the mildest forms of a malladaptive stress response. So maybe for someone you know the answer is with the brain, and not the body.

In a fight or flight state the body moves resources from the digestive system and changes body chemistry to move focus away from joy and excitement to survival. Anything digestion or mood related can be a result of a chronic stress response. All the way to serious and debilitating symptoms. Disease/infection doesn't create a symptom, the brain creates a reaction to a perceived threat. A fever for example, the bug or virus doesn't cause the fever. The body detects a threat and the brain sends out signals to heat the body up to a temperature high enough to ward of the threat. The pain and misery is the stress reaction, the body's attempt to heal itself.

So to make a long story short, here I am in Mexico. No longer restricted by my capabilities, we decided to celebrate the victory and freedom by taking this trip.

Hopefully someone reading this is thinking that this could be my answer. For the first time in years I am fully confident that I am on my way to 100% recovery.

 

[ChuckD]

Wow! Thanks for sharing your journey with us. The medical system is very good with many ailments but often struggles when it comes to a lot of neurological problems. I’m glad you were able to find help.

Living in a Lyme hotspot and spending much of my time outdoors I am amazed I’ve dodged this bullet (so far) I’m always wondering if the new sore knees, fatigue or arthritis are Lyme or me getting older and fatter.

 

[jswordy]

The real significance of this trip is far greater than the pictures show.

I am sharing this because it is so huge. It is very exciting and we tend to share a lot more than just wine making, but there has to be one person on here, or a family member or friend, that will benefit from this story.

I have alluded to some things in my posts, not being able to eat beef, and I did a hole thread on chemicals in wine, but I have glossed over much of my reality. When I was 27 I got the dreaded tick bite. I can only pin point that time frame by tracking symptoms, I never noticed the bite. I got neurological issues first, Migraines, involuntary movements and muscle twitches, stabbing pains in my muscles, and as the years progressed I got more and more random symptoms.

I saw a few dr's and every test came back clear. I was never given a hint that there could be anything other than random genetic traits that caused my inconvenient little issues. Moving forward 10 years with little symptom after little symptom I was completely unable to function. I was in constant pain, I had physical reactions to everything. I couldn't wear deodorant, I would get a rash. Gas fumes, or any chemical, would give me a migraine. I got dizzy spells. One day I was driving down the main road in town and the world turned upside down. I had no bearing on anything. I was luckily rolling through a light as it turned green and just kept it straight until it passed.

After that I wouldn't drive.

At my worst I was very angry and confused. I would completely lose words, simple things like the name of that thing out there... The building? Yes, thank you! I would be talking about Edmonton and say Vancouver, and then during a conversation my mind would completely wipe and I would have no idea what we were talking about.

I found a Dr. in town and wrote down everything I could think of, when this started or that. He laughed and asked why I wrote it all out. Well, I couldn't remember or articulate my point. I got some blood work done, and my liver levels were through the roof. His professional advice. Stop drinking. Nothing more. I asked to see a rheumatologist because fibromyalgia was the only thing I could find that checked any of the boxes I was experiencing.

I was diagnosed with fibromyalgia and then ignored by the medical system, even thought the rheumatologist was holding two positive Lyme tests. He said he didn't know what they meant. I was offered a pamphlet to a support group because there is no known cause or treatment.

We saw a post of an acquaintance who was dealing with Lyme on Facebook around the time of the first visit to the Dr. That got me on track. I found a Lyme literate naturopath and got an appointment. The only MD I could find was a 6 month wait. We sent blood samples off to Germany and it came back positive for Lyme. I went back to the Dr. and got a lyme test thinking being in that system I would get more support. It came back positive, but was ruled abnormal/negative because Lyme is not considered to be prevalent in Alberta. I was in BC when I got bit, but I only include this to demonstrate how hard it was to identify the cause. Once I knew it was Lyme, I pretty well spent the next year on the couch doing treatment protocols of some sort and looking for the next miracle cure. The next two years were very slow increases in function and this April will be 2 years since I moved to Edmonton for a month to do ozone treatment. When I came home I was at 90%.

We were on year 10 of our 3 year plan to put in a house and decided to fast track it. Prices were skyrocketing. I went back to my regular self, working long hard days. Clearing trees, moving dirt, digging well and power trenches, rerouting septic lines, etc etc. For the last 16 months I have been getting more and more symptoms back, and I have been completely unable to figure it out. 6 months ago I went on the auto immune diet, which eliminates the foods most common for upsetting the immune system. As inflammation drops you are supposed to add food back in. I started reacting to more and more things instead of getting less sensitive.

I decided to retest and see where I was, if Lyme had not been eliminated, or if I had missed co-infections. About a week later I found DNRS. I saw a success story of a young man that had Lyme. He was unable to walk or function at all. He managed to push the infection back, but like me he had lingering issues he couldn't move past. DNRS is a neural retraining process that uses the principles of neuroplasticity to rewire the neural pathways in the brain.

It turns out that with at least a 15 year infection my body locked itself in fight or flight mode. My brain had 'written' so many associated pathways with illness that although the infection was removed or reduced it still associated the threat to those items. This included my behaviours as well, as the symptoms really piled on while I was developing my property and building a business. Long hours and stress piled on an already floundering system. As I continued to work hard on the house I began to trigger old pathways and reactivate the stress response of the brain.

Since starting DNRS on Dec. 5th I have eliminated most of the food issues. My energy levels are up. If I get a migraine it is minor and short lived where before they would keep me in bed all day, and bad ones have made me consider a trip to the ER.

So obviously for me this is great. If you are limited by food restrictions you can't travel, and here I am only 2 months later. But, this is not just a Lyme thing. The pandemic was so overwhelming with the isolation and restrictions, for some people that was enough to set this off. They call it long haul covid. Chronic fatigue, fibromyalgia, IBS, Chrones disease, mold illness, balance, anxiety disorders, depression, chemical sensitivities, electromagnetic sensitivities, and food allergies are a few off the top of my head. The list is long. My understanding is that celiac disease is one of the mildest forms of a malladaptive stress response. So maybe for someone you know the answer is with the brain, and not the body.

In a fight or flight state the body moves resources from the digestive system and changes body chemistry to move focus away from joy and excitement to survival. Anything digestion or mood related can be a result of a chronic stress response. All the way to serious and debilitating symptoms. Disease/infection doesn't create a symptom, the brain creates a reaction to a perceived threat. A fever for example, the bug or virus doesn't cause the fever. The body detects a threat and the brain sends out signals to heat the body up to a temperature high enough to ward of the threat. The pain and misery is the stress reaction, the body's attempt to heal itself.

So to make a long story short, here I am in Mexico. No longer restricted by my capabilities we decided to celebrate the victory and freedom by taking this trip.

Hopefully someone reading this is thinking that this could be my answer. For the first time in years I am fully confident that I am on my way to 100% recovery.

(This is too long for WMT, so I broke it into two parts.)

Part 1

Oh, I can relate. Way back when Lyme was coming into public consciousness (but had long been recognized by the medical community), I was on a trip visiting my parents in northern Illinois and my Mom was complaining of fever and flu-like symptoms, and had a rash on her leg. She had been to a doc who diagnosed her with flu. Having read all the newspaper reports (remember newspapers?), I took one look at the bulls-eye rash and said, "That's Lyme Disease, Mom! Get back to the doctor!"

When she returned, the doc simply referred her to a dermatologist.

When her dermatologist appointment came, he gave her a topical cream for her "rash."

The entire time, after I had returned home, I was yelling down the phone to Mom to have a Lyme test, have a Lyme test, have a Lyme test. But the docs wouldn't listen nor give her one because it was thought Lyme was not in the area. And of course, time was passing by.

After I had been home about a month, I got the call nobody wants. Mom had been airlifted to University Hospitals in Iowa City after having a severe stroke. The right side of her face was paralyzed. Docs were puzzled.

I immediately started yelling down the phone, "Have a Lyme test! Have a Lyme test! Make them give you a test!!!"

The hospital was resistant as the docs there tried to determine the extent of her nerve damage and what caused the stroke. More days, and they were coming up with nothing, Her brain function said there was no stroke. Pushed by my Mom, who was being pushed by me, and some by my Dad, too, after a week they finally relented.

The very first test was positive, and they ran two more to be sure, and then started her on intravenous antibiotics. Eventually, she regained much of the function on the right side of her face, although when she smiled, you could see a slight downturn to the right of her mouth for as long as she lived. The mark of the disease.

I was so furious at the long list of degreed fools who had put her through this – when a layperson had diagnosed it quickly on first sight and soon enough to prevent all that happened – that uncharacteristically I was urging them to sue. But they were not that kind of people, either, so they didn't.

The resulting studies of my Mom's nerve damage and how much function she recovered after aggressive treatment for Lyme were published as one of the first case studies of nerve damage and recovery from the disease.

 

[jswordy]

Part 2

The entire episode taught me NOT to be a complacent, compliant patient but to do my own work to understand my conditions and the various ways to treat them. That saved me once from being killed by prescribed medication, but that's another story.

I really understand the struggle you have been through, as your experience was of a much longer duration than my Mom's few months. My wife has had chronic fatigue syndrome for years. It is common for doctors to "diagnose" this syndrome as hypochondria. The utter incompetence and deafness of the medical community caused her to return to college to become a clinical herbalist and treat herself, with great results. During her second career as a clinician, she helped literally thousands of others manage the syndrome's symptoms and effects so they could lead fuller lives.

My deep and hearty congratulations on being free!

 

[sour_grapes]

Thank you for being willing to share your journey. The brain (and the rest of the nervous system) is indeed a funny thing... Congrats on the progress and good luck on the rest of the journey.

 

[vinny]

Wow! Thanks for sharing your journey with us. The medical system is very good with many ailments but often struggles when it comes to a lot of neurological problems. I’m glad you were able to find help.

Living in a Lyme hotspot and spending much of my time outdoors I am amazed I’ve dodged this bullet (so far) I’m always wondering if the new sore knees, fatigue or arthritis are Lyme or me getting older and fatter.

It is definitely something to be aware of. You can see by @jswordy's response how varied the onset can be. For some it is an instant life threatening emergency, others, things just pile up over years.

At this point I am just grateful to see the light at the end of the tunnel.

 

[vinny]

My deep and hearty congratulations on being free!

Thank you, and for sharing your Mom's story. I can completely relate to your wife. I became my own Dr. I had no other choice. It is very frustrating sitting down with 'experts' that don't have any idea about what you are dealing with, or the capacity to think outside of their knowledge base.

There is a community for the members of the program and many people with CFS are completely recovering. If she still has lingering issues have a look into DNRS. There is a free portion that explains neuroplasticity and how the stress response works. For me it was an instant ahha moment. Finally all the missing pieces fit.

 

[vinny]

Thank you for being willing to share your journey. The brain (and the rest of the nervous system) is indeed a funny thing... Congrats on the progress and good luck on the rest of the journey.

Thanks Paul.

I have searched everything imaginable on Lyme and I don't know how I missed this for so long. It was developed in BC, well before I was even diagnosed. I just hope it reaches someone that needs it.

 

[BigDaveK]

I'm very happy for you!
I read your story early this morning but dared not respond until I settled down.
Medical propaganda portrays doctors as super beings and, gosh, they're all just like Dr. House. I've THANKFULLY only been a spectator to the wonders of modern medical technology as they treated my loved ones over the last 40 years. I'm terrified at the thought of needing attention for something serious. I definitely have a low opinion of most healthcare providers. There are a few good doctors, of course, and I like nurses.
Again, good luck and I'm happy for you. Now get your ass moving and make some wine.

 

[wood1954]

Ticks are really bad and doctors just don’t get it. I’ve had erhlichiosis and Lyme. I got in an argument with a doctor when I told her I had a 99.9 degree fever for three weeks. She said a fever starts at 100.4 so obviously I wasn’t sick. Went back and saw a doctor in residence and he ordered a Lyme test and sure enough I was sick. I was lucky 2 weeks of doxycycline cured me. My dog got anaplasmosis from a tick and died. My neighbor got bit by a lone star tick in Wisconsin and was allergic to meat for a long time.
My son had what they thought was Bell’s palsy but it was from a tick.
We really need more research on how to rid our country of ticks.

 

[vinny]

Ticks are really bad and doctors just don’t get it. I’ve had erhlichiosis and Lyme. I got in an argument with a doctor when I told her I had a 99.9 degree fever for three weeks. She said a fever starts at 100.4 so obviously I wasn’t sick. Went back and saw a doctor in residence and he ordered a Lyme test and sure enough I was sick. I was lucky 2 weeks of doxycycline cured me. My dog got anaplasmosis from a tick and died. My neighbor got bit by a lone star tick in Wisconsin and was allergic to meat for a long time.
My son had what they thought was Bell’s palsy but it was from a tick.
We really need more research on how to rid our country of ticks.

You are fortunate. Addressing it immediately is key. Sounds like it is very prevalent in Wisconsin, but I suppose it really is everywhere.

 

[wood1954]

You are fortunate. Addressing it immediately is key. Sounds like it is very prevalent in Wisconsin, but I suppose it really is everywhere.

Unfortunately there are more deer than people in my area so there’s a huge
food supply for the ticks. Plus the small predators are hunted heavily which allows all the small rodents to flourish. I found a supplier of odor free permethrin which I will be putting on my hiking clothes and on my dog. I hope your recovery holds , I have a friend who has a lot of joint pain from having undiagnosed Lyme. A vaccine should be available for Lyme in a couple years.

 

[vinny]

There are a multitude of herbal remedies that could help your friend.

Teasel Root was the most effective for me. It warms your muscles and joints and flushes the bacteria into the blood stream where the immune system can get to it. Japanese Knotweed and Cats Claw are antibacterial and work well in conjunction with Teasel root. Cistus Incannus tea can break down the biofilms that it uses to protect itself. There are many more, but this would be a small investment that could offer some relief.

Actually, I just checked. I have a full bottle of all three blended in one tincture I ordered from a Lyme Dr. I was working with in Ontario. I'll ship it to you if your friend is interested.

 

[wood1954]

That would be great, I’ll ask him today.

 

[BigDaveK]

There are a multitude of herbal remedies that could help your friend.

Teasel Root was the most effective for me. It warms your muscles and joints and flushes the bacteria into the blood stream where the immune system can get to it. Japanese Knotweed and Cats Claw are antibacterial and work well in conjunction with Teasel root. Cistus Incannus tea can break down the biofilms that it uses to protect itself. There are many more, but this would be a small investment that could offer some relief.

Actually, I just checked. I have a full bottle of all three blended in one tincture I ordered from a Lyme Dr. I was working with in Ontario. I'll ship it to you if your friend is interested.

Hey, shouldn't you have some kind of "I'm not a doctor" disclaimer to CYA? I'm sure that would make Big Brother happy.

 

[vinny]

Hey, shouldn't you have some kind of "I'm not a doctor" disclaimer to CYA? I'm sure that would make Big Brother happy.

It's herbs, and I'm not a Dr. You can buy this stuff with an internet search. I just happen to have more time spent in the trenches so my knowledge base is wider on the subject.

It's not like I suggested he try catnip wine or some experimental concoction!

 

[Gilmango]

@vinny so glad you are on the mend. My stepmother deals with all sorts of nerve related diseases, since 1993 (which started when she and my dad visited me in Berkeley, but not tick or geography related, as far as we know), and it has been a 30 year slog.

My wife actually got bitten by a tick when we were in Sweden in 2003, I removed the tick and we knew that Lyme disease was a risk there (in Sweden on the Baltic Sea), but we did not think the bite showed the 'bulls eye' mark which we were on the look out for.

Fast forward 4 weeks later and we are in Germany then Switzerland and she's been having shortness of breath, headaches, just not feeling well. She went to a Swiss doctor in Basel who basically said, 'it's not protocol but I'm prescribing you these antibiotics to try to nip this in the bud, since you are off to the Alps before test results come back.'

Bless that doctor, as my wife was soon hiking in the Alps with me with no more symptoms, short term or long term, I think we really dodged a bullet. And the Americans will appreciate that my wife was billed about $50 equivalent for the doctor visit and the prescription.

 

[BigDaveK]

It's herbs, and I'm not a Dr. You can buy this stuff with an internet search. I just happen to have more time spent in the trenches so my knowledge base is wider on the subject.

I was half joking. No, three quarter joking. Personally I would try an herbal remedy first. Every now and then "they" try to start a pogrom for herbalists and natural remedies. Crazy world.

 

[vinny]

I was half joking. No, three quarter joking. Personally I would try an herbal remedy first. Every now and then "they" try to start a pogrom for herbalists and natural remedies. Crazy world.

Don't worry, I know there was humor there. That's why I threw in the cat nip wine. I just took the opportunity to get my disclaimer in, too.

 

[vinny]

Bless that doctor, as my wife was soon hiking in the Alps with me with no more symptoms, short term or long term, I think we really dodged a bullet.

I think you are more fortunate than you know. Many Dr's have lost their licenses for trying to treat Lyme outside of the VERY strict treatment guidelines of the CDC.