posted
Greetings, I am glad to find this Bulletin Board! I am skipping over LOTS of details for now ... here is my intro.
In a nutshell, I am experiencing chronic LD. After digging through my medical history and places I grew up, I may have had this since childhood, am now almost 60.
Last full time job 2012, a positive Igenex result finally came in 2014, applied disability 2014, been denied 3 times.
1 year+ of rounds of Doxy and Ceftin - not better at all. thyroid is wonky since 1985, and am in 3rd stage adrenal exhaustion.
Have very basic Medicaid, but no doc in this area that recognizes chronic LD as valid.
Family provides the very basics for a place to live, caring for my elderly mom ... got bills I can't pay. I know I am not alone with all this ... not playing you my squeaky violin (pity party).
OK, my first question for all y'all: where/how do I look for emotional support in the Lyme community? (There is no actual group meeting in my area.) Is there a phone group? Do I simply post here when needed?
This list of posts here very specific, great to dig into, yet kinda overwhelming.
I do OK most of the time, but lately all this not being believed by family, docs, and former friends is getting to me.
I do have one friend who helps me to 'dial down' and feelin' what I am feeling, grieve my losses, etc., all that good recovery stuff.
I guess I am just looking to HEAR and be heard by fellow Lyme warriors.
That's it for now. Hope to be encouraged and be an encouragement.
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(breaking up the post for easier reading for many here)
[ 01-13-2016, 03:52 AM: Message edited by: Robin123 ]
Posts: 59 | From US | Registered: Jan 2016
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Welcome! Glad you found LymeNet!
Short reply, you are lucky as that is rare for me. HA!
Sorry to hear about your tuff journey. At least you are not alone now. Post all you'd like here.
If I may I suggest have the non-believers watch the multi-award winning movie- Under Our Skin.
posted
Thanks for the links. I have never seen the website But You Don't Look Sick ... We have all heard that at least ONCE!
The Spoons article confirmed that I am on the right track. Recently relatives visited, some of whom I had not seen for 12 years.
They came to Las Vegas where I live, so your KNOW there is no end to toxic environments to 'have fun' in.
At the first dinner together, I turned to the ones whom I had not seen in a more than a decade, and said,"I am so happy to see you, glad you came! Yet, things to do that most people call fun, are just painful for me to endure.
I value the renewal of our relationship, so I am going to spend the energy I have on face-to-face times together, at meals, where we can get re-acquainted. That is what I have energy for. That is why I won't be going on the outings."
I could tell they really didn't get it, but at least I stated an enforceable boundary. (Hmm, there were probably at least 10 spoons a that table, had I known this story.)
Its the vibe I get from them and other 'healthy' people that cuts me to the core. I used to be one of them. ARGH.
So thanks again, Honorable Contributor! I will be around here, in the days to come.
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(breaking up the post for easier reading for many here)
[ 01-13-2016, 03:54 AM: Message edited by: Robin123 ]
Posts: 59 | From US | Registered: Jan 2016
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posted
Hi - thanks for coming on the site here - hopefully you will find it helpful - sorry you had to go through this most of your life. But I guess better to find out than not find out, because we're all different and we get to find out what remedies we respond to.
Treatment occurs in three areas - kill/deter the organisms, detox, and fortify the body.
You can read through the Burrascano guidelines at the top of Medical Questions.
It would be a good idea for you to learn as much as you can about what's going on so you can understand how we combat it. It also helps to be able to explain to others what's going on - they don't have a picture, they usually don't have a clue what's going on.
It is possible to explain, like, we have a bacterial infection that is similar to the one that causes syphilis - I get real factual with people, to help them understand better what's going on.
We have to get real strong that way, because we don't get a lot of help or understanding out there - it's my view that we get to teach the world what's going on.
It took me awhile emotionally to take in what had happened to me, so there's that emotional time of just absorbing this, and then once I was through that, I got ready to teach the world I encounter about what's going on, and I do, every day.
First of all, all states have free online chatgroups - you might find out whether you have very many folks actively chatting on yours -
2nd, ask away all you want here - lots of experienced folks to walk you through the various issues we all face - you can post in General Support or ask medical questions in the Medical Questions section.
I doubt any docs take Medicaid because it doesn't pay hardly anything. I have the doctor list for CA, if you would like to chat with me privately - to do so, click on the envelope with the pencil to send a private message.
Posts: 13116 | From San Francisco | Registered: May 2006
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Welcome NanceLynn, we hear you. We've all been there. A doc recently told me I looked great. I told her that she couldn't really tell from my face how I felt, that I was putting on my best face and trying to stay positive.
I'm thinking about not wearing makeup anymore or getting my hair done. People just don't get it. Yes, it gets old. So support groups are the best place as well as here on Lymenet.
We also get visitors who want us to help them tour the area. We tell them I have lyme and can't go, but hubby takes them around instead. I don't feel guilty about it. I'm happy to see them but I have to take care of myself.
As far as adrenals, acupuncture helps. Hang in there, you're not alone!
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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MannaMe
Frequent Contributor (1K+ posts)
Member # 33330
posted
Welcome! Glad you found Lymenet. It has been a huge support to us in our Lyme Journey.
We also know what its like to have family and friends not believe us.
Dr James Wilson's Adrenal Supplements have been very helpful for my husband. When he started taking the supplements, he was struggling to work 2 hours a day.
A month later he was working 5 hours a day, with a break in there to rest an hour or two.
He's heard the "But you look good" so often... he sometimes responds, "Yes, if I looked the way I felt, it would scare you!"
My hubby has given up trying to go places or do things to please other people. He's the one who suffers and needs to recuperate for a week afterwards.
And the people usually didn't appreciate the great effort he put forth to be there - it still wasn't good enough for them. So do what is best FOR YOU!!
Posts: 2249 | From USA | Registered: Aug 2011
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
NanceLynn, I posted this today, it's named> SO YOU HAVE A FRIEND OR FAMILY MEMBERS WITH CHRONIC LYME DISEASE- It may help your family & friends understand a little better.
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.
"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."
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.
What a warm welcome, compassionate, and informative also. I will be back on to answer your individually in the next few days .... For now I've got a date with my pillow it's pretty late here and I got some insomnia to address.
Again thank you all, my heart is warmed by your responses and great info and tips... I look forward to be in touch soon ...
Posts: 59 | From US | Registered: Jan 2016
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Scroll down for financial help, etc., available from several sources.
The Lyme Test Access Program (Lyme-TAP) is a nationwide patient assistance program to provide assistance for initial Lyme-related lab tests to patients who demonstrate true financial need. I think coverage is up to 75%. View on www.lymetap.com
For uplifting, encouraging, life-changing music, listen to KLOVE (FM radio). You can listen online by clicking on "Listen Online" on their homepage (upper-right hand side) or you can find a station near you by going to "Find a Radio Station" under the photo/video on the homepage.
Btw - when posting on Lymenet, please break up your posts into 2-3 sentence paragraphs, as there are people on Lymenet who cannot read large blocks of text due to neurological problems from Lyme. Thanks.
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