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Lyme Disease ~ So I've been diagnosed with Lyme Disease!

toyotafan

Toyota Truck Club Founder
Staff member
1000 Posts
So my oldest son has had some health issues for years, and the symptoms and issues related to them also keep coming and going in very weird cycles, again for years. So on more than one occasion we had his blood checked and it keeps coming back that he's got a low immune system. Same old same old, just watch out for him getting sick and stay on top of it.

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FIRST PANDAS - BAD STUFF WITH STREP BACTERIA

Then he started to get some unusual symptoms, so we were put in touch with a specialist who said he's got "PANDAS" which is Pediatric Auto-immune Neuro-Psychiatric Disorder Associated with Streptococcal Infection. This is scary stuff, they now believe that in the right situation, strep (think Strep throat) can affect the brain. That's a gross over-simplification, but that's the general idea.

THEN OTHER BACTERIA - INCLUDING LYME DISEASE (BORRELIA BURGDORFERI)

Long story short, the immunologist that we've been seeing suggested that we look for chronic infections through a blood-draw and see what comes up. Turns out there was a LOT of stuff that has been overlooked for basically his entire life! Including Lyme disease, which technically is Borrella Burgdorfrei. We're treating him now with long-term antibiotics and other protocols, everything except for the Borrella infection, because that's just about illegal to treat in Texas.

THE WHOLE FAMILY IS SHOWING CURRENT AND/OR PAST ANTIBODIES FOR LYME

The immunologist said that the entire family should be checked, and we ran our labs against Lyme Disease ... looks like we're all showing that we've got the antibodies for it! My labs came back very strong for an active infection, from what I understand it's because I had just recently taken a short-course of antibiotics, so that probably "provoked" the bacteria to come out of hiding.

WHY THE *@#* IS LYME DISEASE SO CONTROVERSIAL?

So, why the controversy? Turns out there's two schools of thought on this and one school is steeped in academic bureaucracy and that includes the quasi-military CDC (Center for Disease Control), which takes it's scientific queues from the IDSA (Infectious Disease Society of America - which is NOT a governmental group) on Lyme Disease and there are some fishy characters inside of that group who may have conflicts-of-interest that bias their view.

ISDA VIEW ON LYME

Anyhow, the IDSA states that there is no evidence for long-term or "Chronic Lyme Disease". However, much of this decision was based upon one or two people inside the Lyme Disease panel in the IDSA and one member of the panel in the IDSA said that the guidelines were railroaded quickly with little or no discussion and no follow-up discussion.

Their view is that a Lyme Disease infection can be treated with a short-course of antibiotics and any lingering effects from the infection probably represent permanent damage. They also state publicly that a Lyme Disease infection is almost always associated with the bite of a certain type of deer tick and that the tick must be attaches for 36 hours and only in a few isolated parts of the country.

ILADS VIEW ON LYME

However, according to a wide range of physicians, researchers, clinicians, medical school professors and more, there are a lot of people who say this is nonsense. They grouped together to form ILADS (International Lyme and Associated Diseases Society).

The people at ILADS say that deer ticks are being spread all over the country (studies show that to be true) and there was only one study that showed it took that many hours for bacteria to be transmitted from the tick to the host. Many researches believe that the bacteria can be transmitted in just a couple of hours, not a day and a half. Not only that, but they've found the Borrelia bacteria in the blood bank supply and they also have proven that it can be spread sexually (it's a cousin to Syphilis after all) and trans-placentaly as well, so babies can be born with congenital Lyme Disease. How about that?

BIOFILM - CUTE NAME, NOT SO CUTE REALITY

So, who's right? Well, in just the past few years a new understanding of how Bacteria try to beat anti-biotics and the immune system has emerged and the key to that is something called a biofilm. I won't get into great detail here, but essentially bacteria are just like soldiers in a fight. They can either try to go off on their own, or they can group together and try to fortify their position to push back the invaders.

Bacteria grouping together is called a biofilm and it's incredibly complex. When they do this they have a communication system, tunnels to eliminate waste products and they can extrude an outer protein to cover themselves up all in an attempt to evade both the human immune system and also antibiotics.

ABOUT US

So, we're just now started down the path for therapy. But, in my case I was a very good student up until about the 3rd grade. I pulled a tick out of my scalp that could have been there up to a few days and later that year I started to have significant issues cognitive issues ever since.

My wife's mother said that my wife got a significant major rash and that she was almost lifeless for a period of a week or ten days back when she was a little girl. She's also had a lot of medical issues in her life and a lot of them line up directly with the specific issues that she's had.

My boys are all different and one has a lot of medical issues, one just has frequent headaches and the last one shows some of the PANDAS symptoms ... really hate to think that we could have passed them something either through birth or through breast milk.

OUR JOURNEY

So, we're just a few weeks into this journey and we're doing anti-biotics and some other stuff we're thinking about like the Cowden Support Protocol. Either way it's been a long time getting where we are at, so it might be years before my wife and I get recovered from this nasty bacterial infection.
 
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toyotafan

Toyota Truck Club Founder
Staff member
1000 Posts
Here is a good video to watch, it was on Netflix but just recently was removed.





 

tbplus10

Moderator
Staff member
1000 Posts
Community Leader
Wow, that sucks.
Hopefully ya'll can get a handle on this.
I know a few people suffering from Lymes Disease, it causes a lot of health issues.
 

toyotafan

Toyota Truck Club Founder
Staff member
1000 Posts
This really sucks because I was actually pretty advanced as a kid, my folks said I taught myself how to read by the time I was 3, then was doing basic math by the time I was 4. But after the tick bite, I shut down. My ears started ringing, then I got a lot of floaters in my field of vision, then came some pretty bad anxiety as a kid, that really stunk. Then my grades tanked as I just couldn't concentrate, eventually they said I had add.

My wife has issues are a lot worse ... I won't get into it but Dr. Alan Macdonald, who is a retired MD pathologist, is openly asking if lyme disease is the primary cause of alzheimers disease, parkensons or als...
 

jazz

Mechanic
100 Posts
Wow that's a lot on your plate.. I know Pandas is frequently overlooked because people don't have the usual strep symptoms.. Lyme is as very controversial up here, as if the medical experts can't agree as to whether the symptoms are related to lyme or some preexisting ailment.. You really have to be proactive as some medical professionals are only it for the money.
My own child was misdiagnosed by 4 doctors,,they said it was nothing,,just a cold now go home. We knew better. Finally a real doctor diagnosed whooping cough and prescribed anti biotics. He was surprised so many other doctors could not diagnose her.
 

toyotafan

Toyota Truck Club Founder
Staff member
1000 Posts
Yeah, a lot of physicians are just good at memorizing the work that other people do. The pathologist and research physicians are the ones that I like to follow.
 

toyotafan

Toyota Truck Club Founder
Staff member
1000 Posts
Just had my eyes checked by an optrician, and he ask about eye history.

I asked him the question about seeing floaters in my field of vision at age eight nine or ten, after I had been bitten by a tick in northern Idaho. He kind of stopped and looked at me, and said it is very unusual very unusual for a child to see a lot of floaters in their vision. Maybe one but not dozens and dozens that I saw when I was a child. He strongly urged me to continue with my Lyme disease therapy.
 

toyotafan

Toyota Truck Club Founder
Staff member
1000 Posts
This sucks. If I've been infected for 30 years, it's going to be a LONG LONG TIME before I get this junk out of my body. :-(
 

MuddyTacoma

Mechanic
1000 Posts
Hope you feel better, and can get control of this stuff. Lyme disease has been in the news a lot lately, but what surprises me is how miss informed so many physicians are, they're angry about it and they're quoting studies from 20, 30, even 40 years ago!

As you mentioned, Texas A&M University spearheaded that multi year college and university study and you're right they found 45% of ioxdes scapulara ticks in Texas and Mexico have Lyme disease.

Basically, if you go outside where ticks are likely to be, wear shoes with long socks that come up with ways long shorts if it's too hot to wear pants and check yourself for ticks every time you go in don't let a day go by that you don't check your body for ticks.
 

toyotafan

Toyota Truck Club Founder
Staff member
1000 Posts
My middle son just got his labs back this week and he's CDC positive for Lyme Disease. This stuff really sucks.

However, I have been on a VERY aggressive treatment protocol for about a month and I have NEVER felt better in my life. I'm not tired at all during the day, I'm focused and alert and am doing better work than ever.
 

toyotafan

Toyota Truck Club Founder
Staff member
1000 Posts
My vitamin D level was 18. Doc said it should be 45 or more. I've been taking 50,000 IU's weekly and that alone may be the reason for my extra energy. It's really amazing.
 

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