I've thought about whether I would have believed in chronic Lyme before I got sick, when I was normal. It is indisputable now since I saw the rash, saw the tick, had positive blood tests and now have most of the symptoms on the check list, but I don't know if I would have believed in this as the before me.
Not only is the disease itself utterly bizarre, but the way in which it is treated by the medical community, in which I previously placed my trust, is so illogical as to be unbelievable by anyone on the outside.
Maybe I am a hypocrite in some ways for resenting those with no compassion for me now, but then again we are both following human nature.
[ 04-21-2009, 09:52 AM: Message edited by: John S ]
Posted by Curley911 (Member # 2205) on :
I would put this question to you, how did you feel about people with Fibromyalgia or Chronic Fatigue before you got sick and were diagnosed?
Were you compassionate and caring?
Most of us are hypocrite's until it happens to us. I think that's why the movie The Doctor (William Hurt) made such an impact when it happend to "one of their own". At least he thought he was one of them until it happened to him.
Posted by John S (Member # 19756) on :
My friend's mother had fibromyalgia and finally died of a heart attack in her 50's. The lining around her heart was infected I believe. At the time I didn't know much about Lyme and just accepted the fibromyalgia diagnosis not knowing what it was.
I don't know if it was lyme, but if I were told it was lyme and informed about the whole lyme world I know at the time I'd be skeptical.
That woman lived in unimaginable pain. Her fingers were contorted by the arthritis. If it was Lyme it was a crime.
I think I would have been open minded and compassionate realizing something was wrong, but would I really have believed the person had this illness that most of the medical world disavowed?
Posted by luvs2ride (Member # 8090) on :
Even as sick as I have been and the incredible efforts I have had to make to be as well as I am today, I still sit and ponder a lot what on earth really happened to me.
I do not believe, based on everything I know today, that a bite from a tick triggered all that is wrong with me.
For one thing, I live in the mountains, I play in the mountains and yet it took 49 yrs for me to succumb and I have many, many friends and aquaintances who do the same thing and they are not sick.
Even just this weekend, my realtor said "I pull ticks off me all the time and I don't get sick."
He is right. All of us grew up with ticks. Not all of us are sick. Why????????
In my case, I believe I have the answer. My doctor ran a DetoxiGenome test on me to determine genetically if I detox well. I detox extremely poorly. Very poorly! Out of 6 genes needed to make glutathione (if you don't know the importance of glutathione, research it right now, because you are most likely deficient in it) I only have 5 and of those 5 only 2 are functioning.
Glutathione is so important to our health that studies have found elderly people in good health ALWAYS have high levels of glutathione and chronically sick people of any age have very low levels of glutathione.
So, yes I have lyme disease, make no mistake about that. But I also have Babesia, Mycoplasma P, Chlamydia P, HHV-6, EBV.
We all are exposed to microbes, heavy metals, etc yet many people's immune system deals with it and they don't become chronically ill.
Many other people do become ill unto the point of death but they never connect their illness to microbes or their faulty ability to detoxify.
All my life I suffered bacterial infections. In my 20's I developed allergies. At 30 I had a mild case of Graves Disease which is auto immune.
At 40, my first bout with lyme and 49 chronic lyme that progressed to rheumatoid arthritis.
Today, I am 100% functional inspite of a severe RA diagnosis. Why? Detox and medication.
Detox to eliminate metals and just the toxins from bugs and drugs. Medication to lower the bacterial, viral and parasitic levels in my body.
I do not believe Lyme started this disfunction. I believe a genetically faulty detox system allowed infections, parasites, metals to build up and thrive in my body. Eventually, I collapsed.
That would explain why so many people either don't get sick from the tickbite or are easily cured with a shortterm of antibiotics.
BTW, my first bout of lyme at age 40 took 6 mths of antibiotics to clear.
Doctors need to change the way they evaluate and treat patients. We are all different.
Posted by luvs2ride (Member # 8090) on :
Oh and I will receive glutathione the remainder of my life to compensate for my body's poor ability to produce it on my own.
Posted by John S (Member # 19756) on :
All I know is something in ticks is making people chronically sick and almost no effort is being taken by the medical community to find what is causing this.
Does lyme survive antibiotics, in my opinion yes.
Posted by bwillis (Member # 18811) on :
Your post has made me think. I agree with what you've said. I'm in the middle of this and I still can't believe it. I always had a lot of faith in the American medical system and it nearly crushed me when I went to my doctor, a very good man by the way, and he said he wouldn't treat me.
I still wonder what this disease is and why do some people get better and some people just hang on.
I want to be one of the many who get better so I must keep hanging on to the hope that my LLD, the abx, and supplements will help my body take charge of the disease and bring me back to the life I once lived.
I try to continue to live as much of that former life as I can, believing that if I refuse to give in, it will help.
I also believe in God and pray for his help.
Posted by luvs2ride (Member # 8090) on :
Yes, ticks are dirty. But most people survive the tickbite intact. Did they get bit by a clean tick? No such thing in my opinion.
Also, mosquitos are dirty. Flies are dirty. Pets are dirty. The air we breathe is contaminated. The food we eat is contaminated.
To just say Lyme is the sole source is too simplistic.
Posted by luvs2ride (Member # 8090) on :
bwillis said:
quote:I also believe in God and pray for his help.
Ahhh...the very first thing we should do! God wants us to be healthy.
Posted by John S (Member # 19756) on :
In my opinion luvs2ride it is probably many factors, like you say. It is probably your immune system, what strain of lyme you were infected with, what other things the tick had that it kindly gave to you and only God knows what else.
Posted by luvs2ride (Member # 8090) on :
sigh....yes. I am sure of it, John S.
That is not negating lyme and its effects. Just to say our makeup probably plays a lot into how well we deal with the hazards we are exposed to.
If doctors and researchers would take this more seriously, I think a lot of disease could be stamped out.
Take me for instance. If a gene test had been performed on me at birth or least at a very early age, I could have been receiving glutathione injections all along and probably never would have suffered all the illnesses I suffered nor ended up with a chronic illness.
Just a thought.
Posted by just don (Member # 1129) on :
question for luvs or other people,,,
is this a simple or complex test that determines your 'g' level??
Is it an 'expensive' test?(asked for those of us without insurance)
I find it fascinating that other things,like flys etc are carriers
Is this a posibble senario?? Accidently ingesting a fly ,,meaning it goes thru the digestive tract? Meaning what ever dirty stuff in the fly has to 'endure' thru the digestive juices,,which isnt easy!!
Posted by Need Lots of Help (Member # 18603) on :
Loves,
"In my case, I believe I have the answer. My doctor ran a DetoxiGenome test on me to determine genetically if I detox well. I detox extremely poorly. Very poorly! Out of 6 genes needed to make glutathione (if you don't know the importance of glutathione, research it right now, because you are most likely deficient in it)"
What type of doctor ran this test? Is it something covered by insurance, or not? Is it shots or pills?
I am interested in taking this test. I sound a lot like you with bacterial infections, allergies, arthritis, but I am not quite to the auto immune stage yet, but I am only 36, but I think I am working on it.
Thanks, Shalome
Posted by luvs2ride (Member # 8090) on :
just don,
Lyme has been found in mosquitos and horseflies. But what I meant is that flies of any type carry disease. We can't escape all the possibilities of infections.
The test is easy enough. Draw some blood. Insurance will cover it but my doctor recommended I pay for it out of pocket as it will tell what diseases I am high risk for and an insurance company might use that information against me.
So, I paid $399. for the test.
Needs Lots of Help,
Any doctor can run this test, but I guess you need a doctor who is willing. I would think most LLMDs who are seeking answers would run this test.
Gene testing is still in its infancy and I believe it will grow in use over the coming years. Laws are already being drafted that will prevent an insurance company from dropping you based upon these test results.
How stupid anyway. Now that I know what I am suseptable too I can take precautions against that.
For instance. I am at high risk for breast cancer even though it doesn't run in my family at all.
So I can avoid alcohol, take calcium d-glucarate which stops the formation of bad estrogen. Also exercise and diet which is just good medicine for everyone.
The glutathione supplementation is critical and has a noticeable impact on my symptoms. (improvement)
Posted by Jin (Member # 11735) on :
Dear Everyone, What I think we need to do is study the immune systems of mosquitos, ticks, and other insects and creatures. The reason is because you have to wonder why they can act as carriers but not develop the diseases themselves. Perhaps if we analyze them, we will discover antibodies or special features their immune systems possess. Many secrets could be revealed. This would be a worthwhile effort.
Sincerely, Jin
Posted by Lymeorsomething (Member # 16359) on :
John S, I don't think that I would have believed either many years ago. I probably would have thought people with chronic fatigue were just being lazy. That has all changed. Now I'm trying very hard to believe that I will be normal again....tough stuff...
Posted by John S (Member # 19756) on :
I would have found it hard Lymeorsomething.
Posted by Geneal (Member # 10375) on :
I had the "genetic" testing done.
I am no more likely to succumb to infection as the next person is.
Remember, there are over 300 strains of bb world wide.
Some strains are particularly aggressive and cause symptoms.
Others seem to be more "benign".
So, what is it about some of us that makes us a better meal?
I must taste good.
Realistically though, after my diagnosis, I had 11/12 people
In our area of less than one half of a mile get tested based on symptoms.
Almost all were CDC positive both IgM and IgG for Lyme.
So, where I live definitely is an indicator of how active bb is here.
While gene typing can be helpful and even beneficial,
It is not the reason I have Lyme and other people who live here don't.
They just haven't been tested yet.
I would have never believed that Lyme could have
Caused my neurological issues prior to diagnosis and research.
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