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Author Topic: How do you explain lyme
hurtinginoio
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I would like to know how people have explain lyme to others who do not know nothing about it.

Where do you start beside the tick part. I tried to explain some things but I am still learning myself.

Most people ask why cannot abx just cure it.

Maybe I am not explaining things right, or is it just to hard for others to understand if they have not gone through the disease themselves.

Is there something that I am able to read so I can help other understand it better.

Posts: 52 | From Ohio | Registered: Oct 2013  |  IP: Logged | Report this post to a Moderator
steve1906
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Unfortunately what you’re going through is very common, and most of us are going through the same process with (family, friends, kids, co-workers, spouses etc.) – Some of us for many, many years.

Read this below it should help you understand a little better.

I’m hoping this helps you explain to your family and friends exactly what you're going through, day in and day out.

A Guide to understanding their struggle

It's never easy to understand what another person is going through no matter the cause. The saying holds true that you'll never truly know unless you walk a mile in their shoes.

In the case of Chronic Lyme Disease, there is much to be understood by not only those who know someone with it, but the person battling it as well. Let it be known that this article is by no means a sympathetic appeal, but to give an honest voice of reason to the person battling Chronic Lyme Disease who can't always find the words to explain the complexities of their circumstances.


1. They're not crazy, they're not lazy, and it's not all in their head (pun intended)
This gravy train needs to stop. There has to come a point where reality takes hold and reality is that a highly evolved bacteria with lethal intent courses through the blood of a person with Chronic Lyme Disease; literally dismantling the human body in a malicious manner over an extended period of time until death becomes. That's reality. All other claims are a true reflection of a person's inability to reason effectively.

2. They're not stupid.
They're under the influence So you have the distinct pleasure of having a conversation with a person with Chronic Lyme Disease. Did you notice that they may not appear to be as smart or possess the ability to articulate words much like they used to?

Were they not able to recall an obvious time or memory that you both shared? Did they come to a complete stop in the middle of conveying a thought? Don't worry, it's not them. Within their brain, there exists a bacteria releasing deadly toxins that are directly interfering with the nerve relapses of their central nervous system.

3. They're on a special diet.
You may have the intent of asking a person with Chronic Lyme Disease to join you for a meal. Maybe even one that you cooked but not without your love, passion, and hard work. Here is the deal.

If your meal or a place you intend to visit for food contains either gluten, dairy, or sugar, they can't eat it.

They're on a diet designed to deprive their body of food that directly feeds the bacteria within their blood and provide the essential nutrients their body needs to allow their immune system to take hold. In a nut shell, they're trying to avoid adding more fuel to the fire here. Yes, this includes alcohol.

But no one is denying the food is just as delicious as the bacteria in their body is deadly.

4. They're not ignoring you.
They're reeling It's been a while since your friend or relative with Chronic Lyme Disease reached out to you.

Let's be honest here, living in a constant state of mental and physical pain, accompanied by eccentric, uncontrollable, and unprecedented symptoms, with a life that came crashing down isn't really something to show for; especially when these truths are in their face at all times and can't be ignored.

A person with Chronic Lyme Disease can't talk about a party they went to last night, or the degree they're majoring in at college, or the job they're working, or simply what they plan to do this weekend.

You want to know what they're doing this weekend? Here's what they're doing. They're most likely laying in bed or on the couch, in a both physically and mentally ailing state, wondering time and time again why they happened to be the lucky person to contract such a life altering disease.

Their aspirations have come to a complete stand still as their life now almost 100% of the time revolves around restoring it. Can't you just see how eager they are to talk about their life with you? They have nothing to impress you with.

Also consider that in addition to the reeling, a person with Chronic Lyme Disease more than likely may be experiencing what is know as floating, and more than likely is exhausted in attempting to explain what they're going through to members of their own species when they themselves don't have all the answers.

5. Yes, they had to leave their job or drop out of college; or both.
If a person with Chronic Lyme Disease can't even carry on a simple conversation, how does one expect them to delve into the untouched matters of the universe in their college course or the physical demands of a job. Such societal demands require either an incredible amount of critical thought or physical energy, both of which a person with Chronic Lyme Disease lacks greatly.

Chronic stress is usually a constant factor in college and work and it directly compromises the immune system. It's the last thing a person with Chronic Lyme Disease needs when they're aiming from every angle to remove a deadly bacterial infection. The ultimatum to leave college and/or work, even though it may be temporary, is never taken lightly by the heart.

6. Stop saying "Well you look healthy to me".
Unless you have both microscopic and magnetic resonance imaging (MRI) for eyes, all you can see is the delusional exterior perfectly concealing the destruction that is currently in effect under the skin of a person with Chronic Lyme Disease.

A person doesn't need a visible wound to identify a debilitating physical and mental state of existence. You'll never find a person with Chronic Lyme Disease whose eyes constantly fall out of their socket because of their condition. Almost 100% of all the visible evidence needed to determine how severe or ill a person with Chronic Lyme Disease is resides within their interior. The debilitation can only be felt and truly understood by them.

7. Yes, they've been enduring it for many months or even years.
Hopefully by now, you've made the rational decision to forget the ignorant notion that 3 weeks of antibiotics are all that is needed to remove Chronic Lyme Disease from the body. If not, you're going to have trouble understanding this one. From when the first symptom starts, until the day a person with Chronic Lyme Disease is in remission, many years may pass. Why is this you ask? Well it's very simple you see.

Between a combination of doctors who abide by outdated medical standards, ambiguous symptoms, inaccurate and deceptive testing, and when finally a diagnosis is clinically agreed upon because testing failed time and time again, treatment alone for Chronic Lyme Disease will take a minimum of a year because of the highly evolved complexities of the bacteria and possible coinfections. The entire endeavor is no over night fix. It is the ultimate test of patience.

8. Treatment makes them feel worse.
The idea that treatment for Chronic Lyme Disease causes a person to feel worse is almost counter intuitive, but only to the unreasoned brain. You see, every Lyme Disease treatment protocol must contain either a non bacteria-resisted antibiotic or a supplement of some kind that boosts the immune system in order to effectively eradicate the bacteria.

Got it? Ok. Now when the Lyme Disease bacteria is killed by either the immune system or an antibiotic, toxins are released from the outer member of the bacteria, causing a person with the infection to feel 100x worse than your worst hangover; or worst flu if you don't drink. These endotoxins flood their internal organs and cause what is known as a herxheimer reaction within the body.

If a person with Chronic Lyme Disease kills off too many of the Lyme bacteria in their body at once, the herxheimer reaction can become so severe that it can actually kill them.

For the record, the severity of their herxheimer reaction is a direct cause and reflection of their mental and physical state that day.

9. They don't have all the answers.
It's human nature to inquire about a friend or family member whom you know is not feeling well. You yourself want to understand what is currently disrupting their health and if possible, help them along and expedite the healing process even if it's just by a few good words.

When confronting a person with Chronic Lyme Disease for answers, you will find yourself leaving the confrontation with less knowledge than you had expected to leave with. The reason it that they don't have all the answers nor do they remember the few they have due to their faulty memory.

This also includes a timely explanation of why their life is not adhering to the exceptions you may have had for them. They're currently struggling for truth and answers as they're not easy to find. Try not to make them feel like they owe you more than the truth.

10. They're not bipolar.
If you find yourself around a person with Chronic Lyme Disease often, you'll notice that their mood or condition changes quite frequently. One day they're happy, feeling great or coming off quite intelligent, and the next day they're sad, depressed, irritable, or feeling physically horrible.

Though these continuous fluctuations in a person with Chronic Lyme Disease may lead you to believe there is something else wrong. There isn't. This is actually quite normal because their bodies have been biologically hijacked by a highly evolved bacteria with the intent to kill and cease their biological function.

Good luck, Steve

--------------------
Everything I say is just my opinion!

Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008  |  IP: Logged | Report this post to a Moderator
hurtinginoio
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Hello Steve1906, I just want to say thank ou so much for this.

It was everything I have felt, things I have wanted to say and more.

I cried as I read this because it was as if I was understood FINALLY and I no I am not alone.

Now to, and hopefully get my family and friends to understand and read this.

Thank you so much...

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Kudzuslipper
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Or you can tell them the buggers are very cagey...Like creatures in a sci-fi film. They burrow down, morph, hide in your own DNA and create huge impenetrable walls around their colonies...

The drug/herbal protocols are designed to get the different forms, and peel away the layers of hidden infection. Like peeling the layers of an onion.

and why you don't feel better on abx instantly like you do with strep throat, is that the spirochete, goes out fighting... Unlike other bacteria, it doesnt just die. when it dies it sheds neurotoxins that make all your symptoms worse before you feel better.

I was very vocal at first to friends, colleagues, family... Now I just pretend I'm.... Ok.... When I can. Let them think its the fibromyalgia when I can't. Some how people are more comfortable with a chronic junk Dx than a Lyme Dx.

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map1131
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hurting, when asked how's it feel, describe it.
I always say it like the 2nd day of a bad flu virus when every part of your body aches.

Then I say I have flu like symptoms daily, some days mild flu, like day 3-4, many days are like day 2, and then I'm blessed enough sometimes and my meds and spirit can block it out for several hours.

I also will say sometimes "I have issues from head to toe and you really don't want to hear the long long list of it all".

My close friends and family can look at me or even talk to me on the phone and they know what today is like.

I'm blessed that they always say I'm so happy you're having a good day or I'm sorry that it's a bad day (without) asking the question.

Pam

--------------------
"Never, never, never, never, never give up" Winston Churchill

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steve1906
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You're welcome hurtinginoio - Also read the one I posted today - It's called>

(Please read - But you look so good)

Steve

--------------------
Everything I say is just my opinion!

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hurtinginoio
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Thanks for all of the answers. I do have another question my kids asked.

They wanted to know why it does not make me sick (vomit). I told them I get nauseas all the time but I have only vomited 3 times in the year.

Not to be to vague but I don't vomit much to begging with, however, I just said not everyone gets sick like that with this disease.

AM I right. however will the ABX make me sick.

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steve1906
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Hi hurtinginoio, You’re right, only some of us will have this symptom (vomit).

Although, many of us do get nauseas quite often.
I’m a lot like you in this respect, I never (vomit), but I do get nauseas often – like today.

For me it last anywhere from 1-4 days.
You may get sicker and (vomit) with treatment, again, everyone is different.

I hope that answers or children’s questions.

--------------------
Everything I say is just my opinion!

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hurtinginoio
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Thanks I will show this to my daughter who is 17 will be 18 in 2 weeks and thinks because I am not hanging my head inside the toilet I am not sick.

She is pregnant and thinks I need to do everything for her, she does not realize how sick I m because you can not SEE this disease.

Now that someone else on here does not vomit like me I have proof. sound childish I know but I cannot take the stress.

She is due in 6 weeks and her hormones are going to KILL me.

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surprise
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You could explain it like it's chronic fatigue. Your body is fighting a bacteria, a spirochete, and spirochete bacteria

is sister only to the disease Syphlis, in that it reproduces in your body, taking on 3 different forms to evade treatment, and burrows

into organs and brain, which is why treatment is lengthy and at times debilitating.

Assure her it is not contagious to her or the baby.
But left untreated, can lead to dementia, Alzheimer's, or settling

into your muscles or joints leaving chronic pain and inability to move. Like the disease MS.

Explain as the Lyme and co-infections die off, they release neurotoxins which make you feel sick, and cause inflammation,

which is why you need to rest often, do 'detox' things like baths, light exercise to sweat, take lots of supplements, and watch what you eat.

Chronic Lyme (chronic meaning left unchecked when first caught, letting the bacteria reproduce and riddle your body)
is a DISEASE.

And you are doing your best right now to get better, as you'd like to be around for your new grandchild.

But treating chronic Lyme disease and it's infections (and if you have babesia co-infection that one is like malaria)
is a full time job. Many need a caregiver, or/ and go off their jobs on disability while under treatment.

--------------------
Lyme positive PCR blood, and
positive Bartonella henselae Igenex, 2011.
low positive Fry biofilm test, 2012.
Update 7/16- After extensive treatments,
doing okay!

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hurtinginoio
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Thanks you Surprise, you did a good job at explaining this. I have another question?

I hear a lot of people talk about food. What should you eat. I don't eat much as it is. Food is just not appealing.

As or sweating I do that everyday a lot, I also sweat out a lot of salt and I do not even eat salt. If I do it is sea salt if that matter..

two nights ago was horrible I woke up in a pool of water (sweat) I could not wait to shower. ( my little girl room is right next to bathroom did not want to wake her up at 3am LOL)

I have mention this to the doctor and they have ran test all normal of course. Just find it odd how salty my sweat is considering I do not eat any salt and I have not started any treatment yet,

Any suggestion on this.

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Carmen
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you need salt and lots of it.

I believe nutrition is key to how successful your treatments can be.

If you dont eat salt then where are you getting your iodine from? .... you are not getting it from anywhere! this leads to a weak thyroid and many other diseases.

but iodized salt is far from the solution. you are now so depleted that supplementation is required with lugols iodine

your salt should not be mortons but a full bodied unprocessed salt like Redmonds real salt or celtic sea salt, or himalayan salt that still contains all the trace minerals everyone so critically needs.

talking in enough salt has always been an issue for me so I added the salt c protocol. Im finding that I like drinking all the required water for detox if there is natural unprocessed salt in it.

the type of food you eat should largely be living raw foods. I eat a paleo diet with few to no concentrated carbohydrates like bread and pasta, sugar etc

go to youtube and watch Dr David Bernsteins lecture on salt and his ones on iodine supplementation

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steve1906
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hurtinginoio, Sweating is a very common problem with Lyme disease, and also a couple of co-infections. Read this site below>

Comparison Chart of Lyme Disease and Co-infections Symptoms:
http://www.lyme-symptoms.com/LymeCoinfectionChart.html

Do some searching on lyme diets, here's one site to start with>
Lyme disease diet:
http://www.tiredoflyme.com/diet.html

--------------------
Everything I say is just my opinion!

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hurtinginoio
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Oh I forget to mention I drink tons of water also that my doctor at one point in the summer told me that I was close to being water toxin whatever it is called

I can't remember right now brain fog, I was drinking to much water.

I drink on a normal day about a gallon during the summer I was drinking 2 to 3 gallons because of the heat and I had dry mouth so bad and I also was sweating really bad still do.

But I watch my water intake and it is well.

Thanks for the other information I will check it out

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Rivendell
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Honestly, rather than trying to explain, I think the best thing to do is suggest that they watch Dr. Phil's show that he did on lyme.

I think most people pretty much listen to him and would believe what his show said about lyme.

Now if you get them to watch the show.....

--------------------
Herbal Treatments for Lyme and Co-Infections:
http://buhnerhealinglyme.com
http://www.tiredoflyme.com/the-cowden-protocol-for-lyme-disease.html http://www.sinomedresearch.org http://www.lymenet.org/SupportGroups/

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steve1906
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I think this is the link to Dr. Phil's show on Lyme disease.

http://lymedisease.org/news/lyme_disease_views/drphil-lyme-episode.html

Steve

--------------------
Everything I say is just my opinion!

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Rivendell
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Thanks Steve.

--------------------
Herbal Treatments for Lyme and Co-Infections:
http://buhnerhealinglyme.com
http://www.tiredoflyme.com/the-cowden-protocol-for-lyme-disease.html http://www.sinomedresearch.org http://www.lymenet.org/SupportGroups/

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