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» LymeNet Flash » Questions and Discussion » Medical Questions » Why still so "few" of us who fell ill by Lyme?

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Author Topic: Why still so "few" of us who fell ill by Lyme?
wtl
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I have read so much on this board, and any literature I could get my hands on in the past year about Lyme. And still one thing keeps hunting me, like a ghost that won't go away.

While most here believe Lyme is widely spread, and the disease can be very serious, why then "most" of the people who might also gotten bites from ticks are essentially "fine" or manageable to live full life while few others, like my wife, are so sick that she had to quit her job and now disabled? What else other than the bacteria that's giving her all the debilitating symptoms she is having? Are we sure there is no genetic defect to her body that all the neurologists we have seen are saying? What's the main culprit of her illness: infections or genetic defect?

Please do not see this as my bashing on the theory of Lyme disease. I too wish I could say to myself that Lyme is all it is. I wish I could say everything she is going to deal with from here on is related to the random circumstances she had encountered (lucky or unlucky) but not her own genetic structure.

I don' know how to make my fear/worry clearer than what I could form to say here. But I have been tortured by the ghost...

Could you help me ease my doubt? Please...

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jkmom
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I don't think there is a way to ease all doubt.

My daughter has been disabled by Lyme for 2 1/2 years. There might be a genetic component to her illness, but I am sure there is an infectious part, too. Her symptoms started after a bullseye rash.

If I go with the genetic defect or autoimmune theory, there isn't much hope of her getting better. Going after the bacterial source offers a chance of better health.

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greengirl
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I'm so sorry this all so awful. I commend you for being such a considerate and generous husband.

The book Cure Unknown discusses potential reasons for this at length, with regard to the TYPE of illness that a tick may have transmitted to your wife. It seems to have a lot to do with the particular strain of the lyme-causing bacteria and whether co-infections are transmitted.

As for the number of sufferers, since the dx of TBI is so controversial, who knows how many people out there suffer from TBI, but are diagnosed with something else.

As for your wife, are you saying the neurologists say it's not the lyme, but some (unknown) genetic detail in your wife's makeup. Of course that's possible, but, personally, I would nod, smile and say good-bye to any doctor who said it must be a problem with me instead of admitted he/she can't explain what's causing my symptoms. Now, if a doctor wanted to offer me a particular theory, I'd be willing to listen. But, I would not accept some abstract "genetic" cause of my symptoms.

I've seen lots of specialists and when they say they see nothing wrong, I accept that and add that to my file as something that is ok with me.

Some other people, here, also discuss other things that may contribute to the severity of lyme symptoms (gluten, mold, etc. etc.), that you can look into to see if they're at play with your wife.

Take care

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wtl
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Thank you, jkmom. That was how I felt, except the treatment is very expensive and I don't know what to expect.

I brought this up to the llmd we visited and so far they could only confirm that she is sick with Lyme and co-infections, but beyond that, like you said, what's there to be done?

This is very troubling for me. Feel like you just keep dumpping the money into a hole that you don't know if you can block it, or how big this hole is in comparison to the overall picture.

How well is your daughter doing now?

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wtl
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greengirl - thanks.

Yes, her neurologists (Gosh, I can't count with my fingers how many she has seen) all ignored Lyme, with a few flatout saying there isn't such a thing considering she is in Ohio. I can't seem to make any of them understand, even I accpet Ohio-has-no-Lyme theory (which I don't), she still spent a large part of her life lsewhere, both east coast and west coast. All efforts in those communications have gone to waste already.

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jkmom
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I can't say she is much better than when we started. Mentally, she is better. She used to look she had a mood disorder. I was told she would end up with a bipolar dx. No one would say that about her now.

Other than the mood problems, her main symptom is an unrelenting headache. According to her, that hasn't changed. She does seem a little better because some of her personality is coming back.

She also has muscle twitches and fatigue. Her fatigue is getting a tiny bit better also.

I am the perfect example of someone walking around, not knowing they have Lyme. Looking into all of this made me realize I had a few symptoms also (muscle twitching, knee pain, air hunger). Even though I don't remember a tick bite or a rash, my symptoms improve dramatically with a few days of abx. I have to stay on them or they come back. So I know my symptoms are bacterial and that helps me to believe in this whole thing.

At the end, I want to know that I have done everything possible to get her health back even if we ultimately decide were were dumping money into a hole.

I just re-read "Cure Unknown" and it got rid of some of my lingering questions.

Our insurance has covered all of her prescriptions and part of her doctor's visits. We have had to travel so it hasn't been cheap, but it hasn't been as expensive as I thought yet, either.

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wtl
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Thank you, jk. Glad to hear that your daughter is getting better, even the improvement can be very settle.

I think I will re-read Cure Unknown as well. It was th efirst book about Lyme I read, based on a recommendation from a friend who witnessed my wife's condition. I remember after reading it, I thought I was very clear that's what she has, but then over time, things drag out much farther and slower than my patience affords.

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sutherngrl
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Simply put, its the same as why do some ppl get cancer and some don't. Why do some ppl get the flu and some don't, etc, etc.

I personally do think it has something to do with genetics; that some ppl have something in their genes that fights it off. My aunt got bitten 2x in the last year by a tick and got LD both times, but luckily treated promptly and got better within a few weeks. Her husband who gets bitten all the time has never had LD.

I don't think the answer to that is all that important however. The only thing that matters is that you are doing all you can to get her well. Those of us that do have a problem and get chronic lyme usually have to treat for a long time to get well.

As I always say......LD is very bizarre! And you will never get all the answers. That part was hard for me and still is to a point; but after a while you realize that you just won't ever get all your questions answered, because no one really has all the answers.

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wtl
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sutherngrl - You are probably right. I guess the thought that you are in the "minority" who can get seriously ill if bitten and untreated is a hard concept. But someone will have to be in that group to form the world, I guess.

By reading this board for a while, I somehow got the concept that "majority" of people will get sick if bitten and untreated. And then when I look around the people in the community, it just seems that I was off the base.

And every time when a friend asks how the treatment goes with her, and then gives me that "sympathetic" look while tells me to be sure the doctor is not taking us to the laundrymat, the ghost will come out...Don't get me wrong, these are good friends who might not be most educated with Lyme but have genuine concerns.

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TerryK
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There are many posts in the archives about the genetic issues that make lyme harder to deal with. Also, co-infections, heavy metals, environmental toxins such as mold etc etc...

I am one who was infected for many decades and have been very ill for 20+ years. It is taking me longer to get better but I am getting better. I seem to have many of the genetic issues and environmental issues.

You can do a search here at lymenet or enter some of the terms in google combined with the term lyme disease.

I am cutting and pasting from another post of mine. Please don't ask me to explain each issue in detail. There are lots of links below and you can search lymenet and the internet for more info. I'm just trying to bring some of the issues to your attention so that you can take it from there.

Genetic issues

porphyria (there are several kinds)

KPU (a type of poryphyria)

this thread has a lot of links for both KPU and other porphyria's

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/87840?


Methylation cycle
depending on your specific mutations you can have impaired glutathione making detox very hard, excess ammonia and sulfites, impaired folate metabolism, inability to effeciently get rid of heavy metals, more robust parasitic infections, difficulty deactivating viruses and many other problems.

Methylation panel?
http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/77338?

Biotoxins
Anyone who has lyme will have to deal with biotoxins because they are created when borrelia dies (naturally or we kill it). Borrelia toxins are very toxic and this is a big part of why we feel so sick when we are killing borrelia.


Some of us do not make enough antibodies to efficiently get rid of borrelia toxins. Some can have added problems with other biotoxins like toxins from mold. Borrelia toxins can make us very sick and those of us with this problem may never get well unless we take a binder to help our body bind to and excrete these toxins.

This article explains borrelia toxins

Biochemistry of Lyme Disease:
http://www.townsendletter.com/FebMar2006/lyme0206.htm

Some links that will help explain biotoxins including testing for the genetic problem and treatment.

Dr. S's site. He pioneered the theory.
http://www.biotoxin.info/home

Public health alert
Biotoxin Pathway Holds Key Pieces of Puzzle in Solving Chronic Illness
http://tinyurl.com/m5qdqv

video Dr. B. on biotoxins
http://tinyurl.com/yeto7jd

neurotoxins - Treatment Information Sheet
by Jacob Teitelbaum M.D.
http://tinyurl.com/2h4gd5

Another of Dr. S's sites - you may want to review the whole site
Use of pioglitazone to prevent intensification of persistent symptoms following cholestyramine treatment of patients with Post-Lyme Syndrome.
http://tinyurl.com/ydmllys

http://www.personalconsult.com/articles/aggressivelymetxfailure.html
"You can easily determine your unique genetic ability to remove Lyme's specific biotoxins by ordering a special 5-part HLA inherited gene marker test from LabCorp (test 012542), which is one of the largest labs in the United States."

__________________________________________________

Body terain must be cleaned up. Get rid of heavy metals because they depress your immune system and cause all kinds of symptoms. There is a study that I posted at lymenet that shows that in the presence of sub toxic levels of mercury, mice have great difficulty getting rid of borrelia. That research clearly shows what Dr. K., GIGI and many others have said all along. Get rid of heavy metals!!

Get rid of parasites and other infections that you have accumulated. Make sure you are not being exposed to mold because that too depresses the immune system and some of us can't rid rid of the toxins which can cause overlapping symtpoms to lyme disease. Deal with leaky gut and the list goes on and on for some of us.

Spend some time reading in the archives for detailed discussions on all these issues.

I hope this is helpful and not confusing. It has taken me several years of learning full time to get a handle on these issues and there is still a lot to learn.

Not everyone needs to deal with all these issues in order to get into remission but evreyone with lyme should clean up the body in order to keep a healthy immune system.

Terry
I'm not a doctor

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wtl
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Terry,

This is very helpful, though they are extremely confusing. [Smile]

My feeling is that my wife has a long list of things that need to be taken care of. And that's depressing to think.

Thank you very much for taking the time educating me.

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TerryK
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wtl - I understand believe me! It is depressing but well worth the effort to work at uncovering mitigating factors that are keeping your wife from getting better.

Take it one step at a time. If you can, try to find someone who is knowlegable with all the complications of Lyme treatment such as an LLMD and LLND. Both working as a team would be very helpful.

Most important to find someone who will help deal with co-infections if she hasn't already. A clinical diagnosis may be required because tests aren't very reliable for many of them.

A number of LLMD's don't worry about parasites and in my own case, that would have been a big mistake. I believe it is a problem for many lyme patients.

Make sure you have NO mold in your house - VERY IMPORTANT even if you don't have the genetic issues. Critical if you do. Mold alone can make some of us just as sick as lyme disesase itself.

Work on a good detox program. Take it a step at a time. First get a binder on board for borrelia toxins. Then go on to deal with general detox issues. Consider a FIR Sauna (made with non-toxic materials such as heavenly heat or others). Lots of posts in the archives about detox.

Heavy metals is another potential make or break deal. Some people may have no trouble getting rid of them and others do. Takes the help of someone who knows what they are doing because dealing with them willy nilly can be dangerous.

I wish these issues were easier to deal with but try to just take one at a time and work on it as you go. In no time you will know more than you thought possible (or ever wanted to know LOL).

Keep posting here and reading in the archives for help.

Terry
I'm not a doctor

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sixgoofykids
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Dr. K believes that all adults with chronic lyme either have mold exposure or KPU. I had both. I was extremely ill and am well today. I think treating KPU and mold was HUGE for me. The Bionic 880 got rid of infection.

http://www.publichealthalert.org/pdf/2010_05.pdf

quote:
Dr. Klinghardt believes that it is not possible to have
chronic symptomatic Lyme dis- ease as an adult without a pre- ceding mold illness or the patient having developed HPU.



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wtl
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Thank you, Terry.

And yes, she is working with a top notch llmd out east coast, as I was told here.

At our last visit, he asked us to test for mold, and also radon in the basement. Now you mentioned it, I am going to clal someone out for a test and address the issue if there is any problem of either.

You are right, this whole deal seems to be that you try to address one issue at a time, and you are not gotten know where it all ends until you're there. Without both she and I have a grandma who sits on an gold mountain, it gets tricky to keep go on, and try to maximize the "return" of what you have...
Thanks again.

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wtl
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Oh great, now I have to study up all the KPU stuff. [Smile]

Thanks for the reminder, six.

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sixgoofykids
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The article I posted is extremely informative. You don't have to do high doses of the zinc .... I just used Depyrrol, which has 30 mg, well within safe ranges. I also take oil of evening primrose and a little bit of copper since I've been taking the zinc for so long. It seemed to be the final missing piece for me.

I also had mold. Not even the "bad" mold, I had "normal" shower mold in my Select Comfort mattress. However, even this mold can lower the immune system.

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wtl
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Now, six, just tell me if you have any job other than being an encyclopedia for Lyme? (kidding)

You are an enormous library of wealthy knowledge. Thank you.

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TF
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Wtl, there are many, many people out there who have lyme disease, only they DON'T KNOW IT !!!

They have been told they have chronic fatigue syndrome, and they don't want to spread the word to others that they have that because many people will not believe them and will think they are just lazy.

They have been told they have fibromyalgia, and they don't mind telling people they have that now that it is more accepted as a "real" disease. However, many people and doctors still do not accept fibro as a real disease.

I meet people who tell me they have fibromyalgia all the time. Mothers and daughters have it. And, their dog has lyme disease. If you have 10 women in a room, I guarantee at least 1 has it. (By the way, it is almost exclusively a woman's disease. Just like lyme attacks many more women than men, all due to the hormone estrogen which helps the lyme to get established in our bodies.)

Then, you have all the women who have been told they are in menopause, even though they are 36 years old or any other age you want to name. They believe it.

So, what I am trying to say to you is that where I live, many, many people have lyme disease, but they think they have "signs of old age" or one of the things I named above, etc, etc, etc.

Only a small percent of the people who have lyme disease find out that what they have is lyme disease. The great majority of them just suffer year after year going from doctor to doctor trying to find one who can help them.

I did that for 10 years, so I know there are lots of people like that. One doctor said to me, "I see lots of people like you." BUT, he didn't offer me any help or medication. He just said all my tests were normal and that he sees lots of people like me.

Since the medical profession is so unaware of lyme, all the lyme sufferers just wander around or just suffer because they have given up trying to find a doc to help them.

I'm sure there are plenty of people around you that have lyme disease. Well, maybe not in Ohio, but we are loaded with them here.

Some get alzheimers diagnoses, some get ALS diagnoses, parkinsons, etc. They don't question the doctor's diagnosis. They take the treatment and eventually die. I have seen that happen more than once. As I said, we have a lot of lyme around here. Maryland has the 4th largest incidence of lyme in the nation.

Now, veterinarians are very knowledgeable about lyme. They don't tell a person, "Your dog has chronic fatigue syndrome, your dog is depressed, your dog has fibromyalgia, etc."

No, they say, "Your dog has lyme." In fact, here in Maryland, I understand vets treat all dogs yearly with some kind of lyme vaccine. Why? Because lyme is rampant here.

Try asking a vet if he sees many dogs with lyme disease. Then, you will see the truth of what I am saying. The dogs are all getting lyme disease like mad. It is only the people who are getting told it is not lyme, it is X, or Y, or Z disease.

Now, not all lyme sufferers get as sick as your wife. Probably because she was exposed to chemicals growing up and other factors that you will have to look into. But, many many people have lyme disease. I assure you. I was in that group for 10 long years, and nobody was helping me at all. And, I have so many friends that have the same story. Very sad to me.

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wtl
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TF - as always, your words hold special weight for me. Thanks. I will have a little better sleep tongiht, and hope you do the same.
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wtl
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Terry - I want to come back to say thank you for these organized links provided. I think I have read some of them before, but not in such an organized way. Hats off.
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sixgoofykids
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quote:
Originally posted by wtl:
Now, six, just tell me if you have any job other than being an encyclopedia for Lyme? (kidding)

You are an enormous library of wealthy knowledge. Thank you.

Haha! You're welcome! I just know what I had to do to get better. Since I was sick so long, I needed to address more than *just* infections. And yes, I do have another job .... raising kids and teaching pilates! [Big Grin]

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massman
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Excellent points in the posts above.

I lived in OH for almost 20 years. No lyme ?
Cannot think of a more idiotic response than "no lyme in ______ (fill in almost any state).

Ticks etc can read road signs + jump off their hosts when they see the signs ?

Some other health pro friends and I were finding lyme cases in different parts of OH. There was a vetrinarian in Newcomerstown that died from it.
I worked in Amish Country + other places where we found cases.

I do know a LLND that works with a LLMD about 15 miles from the OH border if you are interested.

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TerryK
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wtl - you are welcome! We are lucky that so many LLMD's take the time to put the info out there to try to help people.

Dr. K's site is a wealth of info for KPU, heavy metals and other issues.

http://www.neuraltherapy.com/library.htm

I agree with TF. We are endemic in my State but no M.D.'s will treat. Most members of my family are sick including children and grandchildren. Amoung us we have diagnosis of fibromyalgia, atypical sarcoidosis and chronic fatigue syndrome but it took me flying to another State to finally get a diagnosis of lyme and appropriate treatment.

My State has high numbers of MS, fibro and CFS but doctors here say NO lyme. You can bet that many have lyme but as TF said, they don't know it and if you try to tell them to have it checked they either don't believe it or can't find a doctor to run a test.

Terry

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ThatColorGreen
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regarding genetic factors:

recall that the lyme vaccine was discontinued, as 30% of the population apparently had a genetic incompatiblity with the vaccine that triggered an apparently untreatable autoimmune arthritis condition.

So it is to my belief that indeed genetic factors may play a role in how someone is affected by their infection.

Other factors need to be taken into consideration also; like which strain of Borrelia has the person been infected with? are there co-infections?
How is his/her immune system?

Environmental factors such as location, toxins, heavy metals and perhaps even diet.

Someone can be a ticking time bomb with the disease.... all it takes is one stressor and the infection strikes aggresively.....

If many are like how I was for the 15 years going undiagnosed, people may eventually think , perhaps everyone feels like this and i'm making a big deal out of nothing, so i suppose i'll keep quiet and just push through the days...

and in such circumstances, those lyme cases will go not only undiagnosed, but that person and all of their symptoms will go unheard.

... etc ... etc ... etc ...


<3

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wtl
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six - that sounds like two real jobs, raising kids being the primary and the hardest. [Smile]

massman - yes, if you could PM me. Much appreciate.

Terry - From reading the Dr. K's website at time, I almost made an appointment with him. I even went ahead and talked to the office manager. Then the NY dr.'s name came up and so we went east...

I do know what you mean about the mainstream doctors refusing to even hear the L-word. I could see that when I mentioned it to my wife's PCP, asking if she being her primary could help administer IV, and I still can't get her wild eyes out of my mind, like I was some kind of criminal asking for her partnership or something. You keep hearing people saying this is controversial but never really know the extent of it. Someone is turning the deaf ear on the public's outcry, for sure.

ColorGreen - thanks for that stat. Wow, 30%?

(I can't type right now so the thousand edits made here in one response)

Posts: 822 | From midwest | Registered: Apr 2009  |  IP: Logged | Report this post to a Moderator
twinkle
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massman,

Could you please PM me about the LLND near the Ohio border?
Is the LLMD there also?

twinkle

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Brussels
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According to dr. K. (or what I understood from his thoughts), it has to do with the 'load'.

The lower the toxic load (from heavy metals, plastics, mycotoxins, other bacterial toxins etc), the better a person's immune system reacts.

The lower the toxic load, the lower the infectious load. And like the egg and hen story, one goes hand in hand.

I had clearly developed food allergies from lyme, which I interpret as also my toxic load increasing due to infections, creating trouble for my immune system.

I don't buy the 'genetic theory' only. Even though I believe some are weaker than others, I guess we all can improve our immune systems.

If I remember well, the percentage of people that dr. K believes are sick with lyme due to genetic problems is very low (about 1 or 2%, if my memory is good?). The rest, I guess, he puts on the same theory of the bad 'toxic load'.

My feeling is that 'cleaning take you somewhere better', killing only will not take you far away. Next tick bite will make you sick again. My opinion.

We're still cleaning our bodies with the KPU on and off, with AI type of allergy treatment, now with vaccination detox at very high homeopathic dilutions.

We no longer have lyme, but I don't want to risk to fall so sick again so I keep cleaning the 'house', everytime I find problems.

As for genetics, one can change gene expression depending on the environment. It was proved in mice. Researchers exposed mice to pesticides, they developed cancer or another degenerative disease (I forgot).

Some genes got deactivated, and the next generations inherited such deactivated genes and will develop same disease, even without exposure to the pesticide!

Do a search in epigenetics, very fascinating subject. There are some good scientific videos in utube too.

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TerryK
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Hi Brussels, Good to hear from you.

You wrote:
If I remember well, the percentage of people that dr. K believes are sick with lyme due to genetic problems is very low (about 1 or 2%, if my memory is good?). The rest, I guess, he puts on the same theory of the bad 'toxic load'.

As I understand it, many of the genetic issues are the reason that some of us have great difficulty getting rid of toxins such as heavy metals. This includes KPU although KPU is not always genetic from what I've read. When you get up to speed on KPU, you will start dumping heavy metals that you could not get rid of before. Same with many of the methylation cycle defects. Not just heavy metals but other toxins too. Same with HLA issues and borrelia toxins. You can't make the antibodies to get rid of the toxins and they accumulate in your body until you are very ill.

Some of the methylation cycle issues can make it harder to get rid of infections such as parasites and viruses adding to the pathogen load. The more pathogens, the more toxins and round an round we go. My understanding is that a fairly large percentage of lyme patients have these issues. Even Dr. K said something like 80% (maybe more?) have KPU. I don't think anyone knows what percentage of those are genetic or acquired for sure.

Good point on the epigenetics.

You wrote:
Some genes got deactivated, and the next generations inherited such deactivated genes and will develop same disease, even without exposure to the pesticide!

Yes, but those deactivated genes may cause one to accumulate toxins and pathogens which is why they are sick.

Terry

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NanaDubo
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KPU can be genetic or acquired, sometimes due to trauma.

Some of us carry the memory of unresolved emotional trauma in our DNA from many generations ago.

AI works for this and many of the other issued mentioned above.

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sixgoofykids
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As odd as it sounds, I used EFT (tapping) for trauma and it was amazing. I went into it skeptically, but since it's free, tried it and it worked.

I do believe I'm a genetic KPU case. I fit the description to a "T". I also think many in my family probably have it.

--------------------
sixgoofykids.blogspot.com

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tick battler
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Hi six,
Did you go to someone for tapping? Can you fill us in on how to go about this? I think Dr. K uses this? I think others found it helpful for lyme treatment.
Thanks,
tickbattler

Posts: 1763 | From Malvern, PA | Registered: Jul 2009  |  IP: Logged | Report this post to a Moderator
   

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