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  #26  
Old 09-20-2018, 02:12 PM
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I know I’m being paranoid, but because of our son’s medical conditions and age, I’m extremely worried about his brain development and how this will affect his logical reasoning in the future. We’ve had to deal with this for so long because of his concussions from sports injuries, a chronic Lyme infection which causes brain inflammation that went undiagnosed for over a decade[...]Oh, our system is so broken.
I can't comment on most of this because I'm the wife of an inmate who was already inside when we met and thankfully he's healthy as a gosh-darned horse. But I have Chronic Lyme and when I read that, holy jeepers I can absolutely understand your concern. We can't get good care out here when it comes to Lyme, I wouldn't hold my breath on finding understanding/interested/informed medical staff inside. If someone says, "I'm scared because my son is in jail with cancer" everyone rallies and supports and has resources up the wazoo. But Chronic Lyme..."is that a real thing?" "how do they treat it" "how does it affect him?"**. Because the thing we want to be at the most stressful and anxiety ridden times of our lives are educators, right? Ugh.

I'm sorry this is happening, at one point in my life this story could have been mine. I was 8 when I contracted, 12 when the Chronic symptoms started to show, 19 when I was thrown into the mental health system because they ignored Lyme then. I'm now 40 with a laundry list of specialists but also hope. Hang in there, mom. This is hard. The illness alone is hard. I know it's exhausting to add in the incarceration bit but if you can find a community advocate to help you explain the impact Lyme has to his attorney, this might be able to impact his sentencing. It's worth a try. Big hugs and so much empathy.


**For those wondering the answers to those questions-- yes, it's real. treatment geared at eradication is shockingly bad at best and illegal at worst. As far as how it affects us-- take the virulence and pain of cancer, the randomness of MS, the mental and emotional impact of personality altering brain disorders and the fatigue of narcolepsy and blend it up. Take a big drink. You're now in Chronic Lyme and probably allergic or highly sensitive to everything that you come in contact with.
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Old 09-20-2018, 02:22 PM
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Or you can be like a friend of mine who, when his chronic Lyme's flares, gets epileptic!
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Old 09-20-2018, 05:26 PM
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My first husband, my kids' dad, has it too. They just diagnosed him, so don't know how long he has had it. My daughter suggested it as he has so many things wrong with him for the past few years - arthritis, gout, nerve pain, short-term memory (that could also be the alcohol), joint and bone pain, numbness, chills, fevers, fatigue. Hard to know if his brain swelled, but that also happens.

Yup, Lyme's disease is real and it can go undiagnosed for decades. When you first get the tick bite, the test won't even show you have it for at least 6 months and then you can get a false negative. If you know and start on antibiotics you can prevent this, but most people don't know.
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Old 09-20-2018, 06:48 PM
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I have a supply of doxycycline.....if I've had a tick on me for just an hour, two doxy immediately, then another 12 hours later and so on for 3 days. Haven't had Lyme's for 25 years since my first case decades ago. And considering that I live with multiple animals and ride through tall grass, barberry (they just LOVE to hang out in barberry) and have come home with multiples on my clothes and animals, I think that trick does it for me!
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Old 09-20-2018, 09:32 PM
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I can't comment on most of this because I'm the wife of an inmate who was already inside when we met and thankfully he's healthy as a gosh-darned horse. But I have Chronic Lyme and when I read that, holy jeepers I can absolutely understand your concern. We can't get good care out here when it comes to Lyme, I wouldn't hold my breath on finding understanding/interested/informed medical staff inside. If someone says, "I'm scared because my son is in jail with cancer" everyone rallies and supports and has resources up the wazoo. But Chronic Lyme..."is that a real thing?" "how do they treat it" "how does it affect him?"**. Because the thing we want to be at the most stressful and anxiety ridden times of our lives are educators, right? Ugh.

I'm sorry this is happening, at one point in my life this story could have been mine. I was 8 when I contracted, 12 when the Chronic symptoms started to show, 19 when I was thrown into the mental health system because they ignored Lyme then. I'm now 40 with a laundry list of specialists but also hope. Hang in there, mom. This is hard. The illness alone is hard. I know it's exhausting to add in the incarceration bit but if you can find a community advocate to help you explain the impact Lyme has to his attorney, this might be able to impact his sentencing. It's worth a try. Big hugs and so much empathy.


**For those wondering the answers to those questions-- yes, it's real. treatment geared at eradication is shockingly bad at best and illegal at worst. As far as how it affects us-- take the virulence and pain of cancer, the randomness of MS, the mental and emotional impact of personality altering brain disorders and the fatigue of narcolepsy and blend it up. Take a big drink. You're now in Chronic Lyme and probably allergic or highly sensitive to everything that you come in contact with.
Got bless you, God bless you, God bless you! I was so hesitant to even mention that diagnosis on here for all of those reasons... you’re making me cry because of your compassion. That’s what my disability is, chronic Lyme. I just got diagnosed 3 years ago, but my symptoms began in 2004. My Lyme literate doctor (LLMD) believes that my son and I were infected at the same time which was 2004 when we lived on the east coast, and only now is the research coming out about how badly Lyme can affect the child’s or adolescent’s brain. So much research just came out about suicidal ideation, depression, impulsivity, and Lyme. The most comprehensive paper just came out about a week AFTER my son had his mental breakdown that got him thrown in jail. Looking at all of the symptoms and knowing the ones most young people have, NO WONDER THEY SELF MEDICATE. After living through this myself, I can’t believe that I DON’T self medicate. I’m going to hop on my soapbox now for people reading this who don’t know about Lyme.

For more info about the mental issues Lyme and co-infections can cause, google “Lyme and depression” and Dr. Robert Bransfield, Dr. Rosalie Greenberg, and Dr. Daniel Cameron if you’re interested. Can you imagine? My son has probably been dealing with an active Lyme infection since he was 4 years old, and all of the doctors missed it. That means chronic brain inflammation for overa decade in a growing child! We have spent literally hundreds of thousands of dollars of our own money on his various treatments and “programs,” and it wasn’t until about a year ago that anyone in our area was knowledgeable enough about it to even suspect he had it. He still didn’t receive treatment because he and my husband stuck their heads in the sand. I understand why they did it. After watching what I’ve gone through all of these years, who would ever want to admit to themselves that they had this disease? Instead, my son has been seeing psychiatrists who know nothing about Lyme and co-infections and have been giving him psychotropic medicines which aren’t helping. Why would they help? He has brain inflammation and major immune system problems. They’re treating the symptoms, not the disease. If we still lived on the east coast where it’s endemic, we would have probably figured this out years ago, but where we are, people are clueless. I mean, my own doctor didn’t realize I had it until about 5 years ago and only found a test he trusted about 3 years ago. He has been learning because of so many patients who were sick coming to him with unexplained symptoms, and he was our last resort. That’s how I ended up there. He started putting things together and realized almost all of us were suffering from the same thing. Most of us ended up having Lyme and co. Amazingly, a few years ago my test DID come back positive which is almost miraculous even though I do have a textbook case of the disease. However, neither my son nor I had a bullseye rash ever. I CANNOT BELIEVE HOW FREAKIN’ LONG it took to get a diagnosis for us. I can’t tell you how many blood tests I’ve had over the years ordered by clueless doctors, mostly for thyroid or diabetes. They all came back perfectly fine. No one even thought to look for Lyme.

Just getting a positive test is almost impossible because the tests are so unreliable, and if you don’t test at the correct part the life cycle of the spirochetes, then the test will come back negative. (The disease is caused by spirochetes instead of a virus or bacteria. They’re creepy.) What’s stupid is that they can just take a blood sample and culture the spirochetes, and even though that’s simple and reliable, no one does it! The politics and hidden agendas of the doctors working with the CDC for so long have blocked real Lyme research and diagnostic techniques and have made life a living hell for many Lyme patients because they are unethical and trying to make money off of patents for medicines and vaccines. There is now a lawsuit against them, but of course no one knows about it except the people who have Lyme or love someone who does, just like no one is talking about prison reform unless they are involved in it for the same reasons. The press doesn’t seem to care. The petitions needed to prevent these problems are not getting signed. (Carl Tuttle, the only person who seems to be able to articulate what is really going on, is someone who needs to have a voice on the national stage. I read and sign everything he writes or endorses.) The insurance companies have also been involved in keeping things about Lyme quiet because they don’t want to have to pay for our over-the-top medical bills. Yes, Lyme and other tick-borne diseases are incredibly complicated, but they could have come up with a cure or at least more effective treatment years ago if it weren’t for unethical people like a Gary Wormser, Alan Steere, and the other evil people involved with the CDC and the insurance scam.

I really can’t believe that you know about Lyme and all of the problems that go with it! I haven’t even told most people I know that I have it because they wouldn’t understand, and I don’t have the good health or energy to bother to explain. I wasn’t trying to sound mysterious or anything, I just never DREAMED anyone on here would know what I was dealing with. Again, GOD BLESS YOU! Now maybe people will understand how serious this situation is. You’re right about the cancer thing too. If he had cancer, we would be totally supported. It’s a no brainer. But because of those nasty people who decided to sweep this disease under the rug decades ago for their own profit, no one understands the desperate need my son has to be treated. If he needed chemo, you know they’d make that happen. Lyme treatment, NOPE. My LLMD is willing to go to bat for him at any moment, but because the diet has to be so restricted in order for treatment and because NO ONE UNDERSTANDS HOW SERIOUS IT IS, he’s just going to sit in jail and get worse. Despite what the CDC says about it, the protocol of antibiotics to treat chronic Lyme for a couple of months does NOT work for most people. Believe me, I’ve tried it. I tried it for 9 months and felt fantastic for the first 8. Then my body started freaking, and I couldn’t take them anymore. (The problems caused are TMI, or I’d share. You don’t want to know.) I was lucky enough to have insurance that actually covered many, many months of antibiotics which out of pocket would have cost thousands of dollars, and it still didn’t cure it. Eventually most people’s bodies can’t take all of the antibiotics anymore, and the Lyme spirochetes that have been hiding in biofilm in your fatty tissues (like your BRAIN) come back with a vengeance once you have to stop the antibiotics. I’ve lived it.

The spirochetes are amazing little screw-like microscopic creatures that can bore into any of your tissues. It’s a lot like syphilis in form and in the fact that it eventually can drive people mad, cause blindness, and appear in many different forms. Just like syphilis, doctors and researchers are starting to call Lyme disease “the great imitator” because it presents in each patient differently and can mimic so many other diseases. However, that Lyme spirochete is a much smarter little buggar than the syphilis spirochete. It can hide in tissues and biofilm and create a nice little hiding place whenever our bodies are given anything to kill it. Also, when you DO manage to kill off some of the regular spirochetes, you can actually die from the build up of the DEAD spirochetes which become toxic. If you don’t detox well enough, it can cause a herxheimer reaction (we call them herxes) that make you feel like you’re dying (believe me, I thought I was when I had my first major one) or can actually cause death. And that’s just from the antibiotics or herbs to treat the disease. Currently there is no actual cure, just treatment, and people with certain gene mutations can get hit a lot harder than others, so not every Lyme patient will be affected as badly as others. I WISH I were one of the lucky ones that could say I’ve been in remission, but that has never been my experience. Researchers have also found that Lyme can be spread by certain types of MOSQUITOES (which is terrifying) and that it’s spreading much faster now because bugs are moving because of climate change. One more fun note... researchers now suspect that it may also be sexually transmitted like syphilis. Un-freakin-believable.

As you can imagine, I’m now having a huge flare and can barely walk or sleep because of the stress in my life. I’ve stopped treating for a while so that I can just try to build up my immune system. I’m sure you know what my coffee table looks like with the 50 bottles of supplements that I have to take every day, not including the ones that have to stay in the fridge. Insurance pays for none of my supplements, some of which are $50 a bottle. I consume no sugar, gluten, caffeine, alcohol, or carbs because of this stupid disease. My allergy list is off the charts, literally. There are so many foods on my list that my card I got from the allergy testing company to take shopping is completely full and says, “see additional lists” on it. I am mostly housebound. I have heart trouble, and my joints don’t work. For years my doctors believed I had breast cancer. Now we know that I have cysts because of Lyme. I used to ride horses every day, hike for miles, go camping, dance, volunteer in my community, teach, and have a social life. All of that is gone now. It’s slowly been taken away by Lyme. My pasture is empty, and I have a cane. I can’t even carry a laundry basket upstairs, or vacuum, or stand up long enough to cook or shower. There is no possible way I could hold down a job. Thank God my husband is handy and was able to put in a handicapped tub for me, or I’d hardly ever even be able to get clean. I have brain fog like you wouldn’t believe and can barely read a book now even though I used to be a biologist and teacher. I used to love to read. Now it’s “Netflix and ILL” because there’s so little I can do. Now imagine what this same disease that I have has been doing to my son’s growing brain for 14 years without any treatment. Because the medical community is so ignorant about Lyme and co-infections because of those hateful people who took charge of the narrative decades ago, we didn’t even see it.

Our lawyer doesn’t even want the doctor’s testimony about my son having Lyme, and my husband is sure that it won’t make a difference. I have medical journals and research papers by the dozen and four Lyme professionals to back this diagnosis up, but because it’s so unknown here, my son will probably end up going for a plea deal and will end up missing out on treatment, probably for years.

I feel so unbelievably helpless, and I’m so incredibly frustrated and sad that no one recognized that my son had this earlier. I believe in my heart that this could have been prevented if he had been properly diagnosed and treated years ago. He could have had a normal, happy life instead of being crippled by depression which he was diagnosed with at 6 years old. What normal 6 year old has depression and wants to kill himself? There is a special place in hell for Wormser, Steere, and all of the other people who were hiding information about this disease to make a buck. Everyone in the Lyme community knows about these crooks. I just don’t understand why the media hasn’t picked this up... it’s going to go down in history as one of the biggest medical crimes ever. The CDC is FINALLY admitting that instead of 30,000 people a year being infected, it’s 300,000, and I’d bet big money that a lot of the gun violence, mental health issues, and addiction problems we have today could be explained in some part by Lyme. The guy who shot up the babies in Sandy Hook? He lived about 30 miles from Lyme, Connecticut where this disease was first discovered when a bunch of children started having symptoms of arthritis and where almost every family has been affected by Lyme in some way at this point. Everyone in the Lyme community believes that young man was suffering from Lyme and co-infections. I believe the deaths of those babies’ are on the souls of all of those unethical doctors and members of the CDC and insurance companies that colluded with them. After seeing and hearing that story and the very likely connection it has with Lyme, I can only thank God that my son is only suicidal instead of homicidal.

Off my soap box.

Last edited by Mama33; 09-20-2018 at 10:01 PM..
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Old 09-20-2018, 10:12 PM
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Or you can be like a friend of mine who, when his chronic Lyme's flares, gets epileptic!
I have a friend I met in the Lyme community whose son contracted Lyme & co as a young teen who has terrible seizures and is also suicidal. He was featured in the movie ďA Ticking Time Bomb.Ē They show him repeatedly having seizures.

Thankfully he is doing a little better now, but he is now in his 30s and has lost so much of his life to these diseases.

This woman has been such a great help to me and also knows the complete panic of worrying about your son constantly trying to commit suicide.

We know people who have had brain surgery when the doctor thought there were tumors, and when they went in to look, it ended up just being holes filled with fluid and Lyme spirochetes. Other people have needed heart transplants. A friend I grew up with has three children, and she, her husband, and all three of their children have it. Her oldest son, a teenager, is having ďheart episodesĒ and is on a monitor.

Thank you so much for commenting. I canít believe so many people on here actually know what Iím talking about! I appreciate the support so much.
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Old 09-20-2018, 10:20 PM
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My first husband, my kids' dad, has it too. They just diagnosed him, so don't know how long he has had it. My daughter suggested it as he has so many things wrong with him for the past few years - arthritis, gout, nerve pain, short-term memory (that could also be the alcohol), joint and bone pain, numbness, chills, fevers, fatigue. Hard to know if his brain swelled, but that also happens.

Yup, Lyme's disease is real and it can go undiagnosed for decades. When you first get the tick bite, the test won't even show you have it for at least 6 months and then you can get a false negative. If you know and start on antibiotics you can prevent this, but most people don't know.

I have all of the same symptoms and more except for gout. I wonder if the alcohol use was his way of self medicating? The only over the counter remedy I came up with that actually helped my arthritis pain was 3 Advil and a glass of wine. One of my brothers who is a doctor threw a bucket of water on that treatment and told me that it will damage my liver and to stop doing it. I have yet to find something that will help as well.

I finally did get rid of the fevers and constant feverish headache when I was on the antibiotics, and thankfully that hasn’t come back. I do still get headaches, but not every moment or feverish ones like before. I think those are symptoms of babesiosis which is a Co-infection of Lyme, but I’m no expert. Usually when someone gets infected, it’s with more than one tick-borne disease, and each has to be treated differently.

I can’t believe this is my life. It’s no fun to feel like you’re 80 in your forties.
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Old 09-20-2018, 10:39 PM
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I have a supply of doxycycline.....if I've had a tick on me for just an hour, two doxy immediately, then another 12 hours later and so on for 3 days. Haven't had Lyme's for 25 years since my first case decades ago. And considering that I live with multiple animals and ride through tall grass, barberry (they just LOVE to hang out in barberry) and have come home with multiples on my clothes and animals, I think that trick does it for me!
Oh, what a blessing for you! I am so thankful you caught it early and know what to do! I wish the antibiotics would work for me. I would love to be even just 50% of myself again.

We were always in the woods and mountains of Virginia, had dogs, cats, and horses, and had deer and other animals right outside our back door. Our doctor believes thatís where we contracted Lyme & co. because thatís when our symptoms started. I had no idea anything was wrong until I started to have sleep problems and then started getting pneumonia every 3 to 6 months. At the time I had a 4, 3, and 2 year old and was a stay-at-home mom. (My salary wouldnít have covered daycare.)

Thatís also when my son started having behavior problems. He was always a very smart, active little guy, but he started to be obnoxious and disobedient. He was so difficult to handle that he actually made one of his pre-school teachers cry. I wish I knew then what I know now. It would have been so easy to change our diet and treat him, and then this entire mess and sadness over the past 14 years could have been avoided. Hindsight is 20/20, right?

We were so familiar with some of the deer in our backyard that we saw every day that we named them. It was such a sweet time with three little babies. I look back and kick myself now for not suspecting Lyme disease, but I guess it just wasnít on my radar.

We spent so much time in the woods behind our house, and though I donít remember ticks or a rash at all on either one of us, there were a ton of mosquitoes. Iíll never be able to pin down exactly how I got it, but knowing that mosquitoes can carry it too is terrifying to me.

Thanks so much for sharing your story. I donít usually hear good ones.
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Old 09-20-2018, 10:41 PM
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Yes, Lyme and other tick-borne diseases are incredibly complicated, but they could have come up with a cure or at least more effective treatment years ago if it weren’t for unethical people like a Gary Wormser, Alan Steere, and the other evil people involved with the CDC and the insurance scam.
So much I could respond to, but this ^^^ is something that you only feel a special rage for when you're infected or loving an infected person. For people who want to know what we're talking about, give the movie "Under Our Skin" a view. It's depressing, but it's our life and it's a life far too many people don't know about when the risk of contraction is so very high.

I had joint and skin involvement from age 8 to 17. And then a few weeks after my 18th birthday, I had what they referred to as a psychotic break at work. Looking back, I can give you a thousand build-up moments that are classic Lyme and would have kept me from being put on ridiculously heavy anti-psychotics. Those meds, which did nothing for my physical discomfort and in fact added to it-- 60lbs put on in under a year, tardive dyskinesia, headaches that made me want to put my head through a wall because external pressure was the only thing that relieved the pain. I was suicidal, I would lie in bed and wail from the pain and the emotional torment. I can't imagine the stress this put on my parents, they were scared sh*tless for me. This was not their daughter. I was social, very active in spite of my physical health, never turned down an invitation and was looking forward to college. But because I was snatched up by a psych diagnosis and put on the pharmaceutical treadmill, my life was essentially high-jacked for six years. I managed a relationship and to get married at age 24 and decided that with the support of my husband I would get off of all meds and for the first time feel what it meant to be myself-- not a pilled up version. And surprise, I was fine. I mean I still had swollen knees and stiff hands and weird rashes. But my mental health improved almost immediately. I still suffer bouts of anxiety, but that's par for what I've been through and what my body perceives as constant threats (living in fight or flight is not for the weak!). The last 12 years have brought new physical complications, but I've got the best help I can get without traveling and paying out of pocket which isn't an option for me.

I don't want to take this thread too far off-topic because the focus is your son and his current circumstance. But if you'd like to hop over to this thread, I'm MORE than happy to continue the conversation with anyone interested. I am sure that the toll this has taken on your own health is immeasurable and I know your son would want you to be doing everything you can to take care of you. I also know how hard that is when things simply must be done.

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Old 09-20-2018, 10:44 PM
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Thank you ALL so much for telling me your Lyme stories. This disease is so isolating, and there are so few people who even know what I’m talking about. I’ve been researching the effect of Lyme and co so much lately, and all I’ve been hearing is that nothing can be done. It’s been disheartening and frustrating.

I’m sorry that any of you have to deal with these diseases, and I wish you didn’t, but you’ve made me feel so supported and so much less alone. Thank you from the bottom of my heart.
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Old 09-20-2018, 10:51 PM
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Originally Posted by miamac View Post
So much I could respond to, but this ^^^ is something that you only feel a special rage for when you're infected or loving an infected person. For people who want to know what we're talking about, give the movie "Under Our Skin" a view. It's depressing, but it's our life and it's a life far too many people don't know about when the risk of contraction is so very high.

I had joint and skin involvement from age 8 to 17. And then a few weeks after my 18th birthday, I had what they referred to as a psychotic break at work. Looking back, I can give you a thousand build-up moments that are classic Lyme and would have kept me from being put on ridiculously heavy anti-psychotics. Those meds, which did nothing for my physical discomfort and in fact added to it-- 60lbs put on in under a year, tardive dyskinesia, headaches that made me want to put my head through a wall because external pressure was the only thing that relieved the pain. I was suicidal, I would lie in bed and wail from the pain and the emotional torment. I can't imagine the stress this put on my parents, they were scared sh*tless for me. This was not their daughter. I was social, very active in spite of my physical health, never turned down an invitation and was looking forward to college. But because I was snatched up by a psych diagnosis and put on the pharmaceutical treadmill, my life was essentially high-jacked for six years. I managed a relationship and to get married at age 24 and decided that with the support of my husband I would get off of all meds and for the first time feel what it meant to be myself-- not a pilled up version. And surprise, I was fine. I mean I still had swollen knees and stiff hands and weird rashes. But my mental health improved almost immediately. I still suffer bouts of anxiety, but that's par for what I've been through and what my body perceives as constant threats (living in fight or flight is not for the weak!). The last 12 years have brought new physical complications, but I've got the best help I can get without traveling and paying out of pocket which isn't an option for me.

I don't want to take this thread too far off-topic because the focus is your son and his current circumstance. But if you'd like to hop over to this thread, I'm MORE than happy to continue the conversation with anyone interested. I am sure that the toll this has taken on your own health is immeasurable and I know your son would want you to be doing everything you can to take care of you. I also know how hard that is when things simply must be done.


I canít believe youíve been through this too. I will definitely look at that thread! I can tell you from a parentís perspective that itís so much harder to know that your kid is suffering than suffering yourself. I am praying so hard for better treatments and cure.

Iím so glad youíve found a way through some of the worst of it. At least for me I was older when I contracted it. I canít imagine how difficult it is for a young person to get it, and to go through the teen years with it? What a freakin nightmare. Iím so glad you had the strength and heart to make a semi-normal life for yourself! That gives me hope for my son.
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Old 09-24-2018, 07:43 AM
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I have all of the same symptoms and more except for gout. I wonder if the alcohol use was his way of self medicating? The only over the counter remedy I came up with that actually helped my arthritis pain was 3 Advil and a glass of wine. ...
Unfortunately, he has been an alcoholic much longer. I didn't know any better when I was younger. We all drank and so did our friends. Then I had my daughter. Parties slowed down. But the ex was drunk every day, self-employed, and came home when he felt like it. My attorney boss was an alcoholic too. It felt like I never got a break as one or the other was drunk all the time. Intervention for the boss, which didn't work very long. The ex signed himself in when he reached a point where none of his friends or anyone would open the door because no one wanted to deal with him drunk again. In 1988 he went into treatment and quit to 10 years. Then he went back to drinking and we got divorced.

Alcoholism runs in his family big time. If there is a gene for addiction or predisposition to addiction (like they told me back then), my son definitely inherited it. Dad doesn't get it that drug addiction is the same as alcohol addiction. Dad would lecture the kid while drunk opening another can of beer so son would roll his eyes and make more drug comments. Dad still doesn't understand that for our son it was the pot calling the kettle black.

Alcohol makes gout much worse. Whatever the specialist told him along with diagnosing him with Lyme's disease, he stopped drinking that same week. I hope for his sake he remains sober.
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Old 09-24-2018, 11:28 AM
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I can't comment on most of this because I'm the wife of an inmate who was already inside when we met and thankfully he's healthy as a gosh-darned horse. But I have Chronic Lyme and when I read that, holy jeepers I can absolutely understand your concern. We can't get good care out here when it comes to Lyme, I wouldn't hold my breath on finding understanding/interested/informed medical staff inside. If someone says, "I'm scared because my son is in jail with cancer" everyone rallies and supports and has resources up the wazoo. But Chronic Lyme..."is that a real thing?" "how do they treat it" "how does it affect him?"**. Because the thing we want to be at the most stressful and anxiety ridden times of our lives are educators, right? Ugh.

I'm sorry this is happening, at one point in my life this story could have been mine. I was 8 when I contracted, 12 when the Chronic symptoms started to show, 19 when I was thrown into the mental health system because they ignored Lyme then. I'm now 40 with a laundry list of specialists but also hope. Hang in there, mom. This is hard. The illness alone is hard. I know it's exhausting to add in the incarceration bit but if you can find a community advocate to help you explain the impact Lyme has to his attorney, this might be able to impact his sentencing. It's worth a try. Big hugs and so much empathy.


**For those wondering the answers to those questions-- yes, it's real. treatment geared at eradication is shockingly bad at best and illegal at worst. As far as how it affects us-- take the virulence and pain of cancer, the randomness of MS, the mental and emotional impact of personality altering brain disorders and the fatigue of narcolepsy and blend it up. Take a big drink. You're now in Chronic Lyme and probably allergic or highly sensitive to everything that you come in contact with.
As a family member of someone who die of cancer due to MEDICAL NEGLECT, no one helped certainly not the prison or medical staff!!!
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Old 10-02-2018, 07:43 PM
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As a family member of someone who die of cancer due to MEDICAL NEGLECT, no one helped certainly not the prison or medical staff!!!
I am so very, very sorry. I canít believe they wouldnít help someone with CANCER? Thatís so terrifying!!! Why is it that our country canít figure out how to care for incarcerated people? I get that theyíve done something wrong and are being punished, but not being treated for cancer? Wow. I am totally disgusted.

Again, I am so sorry.
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Old 10-02-2018, 08:05 PM
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Unfortunately, he has been an alcoholic much longer. I didn't know any better when I was younger. We all drank and so did our friends. Then I had my daughter. Parties slowed down. But the ex was drunk every day, self-employed, and came home when he felt like it. My attorney boss was an alcoholic too. It felt like I never got a break as one or the other was drunk all the time. Intervention for the boss, which didn't work very long. The ex signed himself in when he reached a point where none of his friends or anyone would open the door because no one wanted to deal with him drunk again. In 1988 he went into treatment and quit to 10 years. Then he went back to drinking and we got divorced.

Alcoholism runs in his family big time. If there is a gene for addiction or predisposition to addiction (like they told me back then), my son definitely inherited it. Dad doesn't get it that drug addiction is the same as alcohol addiction. Dad would lecture the kid while drunk opening another can of beer so son would roll his eyes and make more drug comments. Dad still doesn't understand that for our son it was the pot calling the kettle black.

Alcohol makes gout much worse. Whatever the specialist told him along with diagnosing him with Lyme's disease, he stopped drinking that same week. I hope for his sake he remains sober.

Oh, wow, I can see why your son didnít bother to listen to his dad. I probably would have felt the same way. I agree... drug addiction and alcohol addiction are the same. Alcohol is a drug, itís just legal and accepted most places.

You know, I was with a guy just like your ex for a long time. We all partied together when we were young and stupid, and everyone grew out of it but him. I think heís something called a functional alcoholic. It took me years to realize it because Iíd never been around an alcoholic. I always thought it was strange that his parents never had wine or beer at family gatherings like my family did, but after being with him for a couple of years, I figured out why. Heís divorced and has two kids now from what I hear. I hope for their sake heís stopped drinking.

I have to admit Iím terrified that my son is going to manage to get something while heís locked up. Heís still in the jail where itís been (supposedly) difficult to get, but if he gets moved to a prison, I hear that drugs are everywhere. I donít know if he could stay clean or not. Iím so worried for him.
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Old 10-03-2018, 08:59 PM
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I have to admit Iím terrified that my son is going to manage to get something while heís locked up. Heís still in the jail where itís been (supposedly) difficult to get, but if he gets moved to a prison, I hear that drugs are everywhere. I donít know if he could stay clean or not. Iím so worried for him.
The county jail my son was in, the deputy sheriff was arrested the following year by the FBI for being part of a gang that was bringing drugs across the border. Drugs are rampant in our society and while the punishment for any drug in AZ is a felony, the reality is that drugs are widespread within the prison. The last facility my son was at there was so many drugs they were cheaper than on the streets.

I don't mean to add to your burden just to let you know it's there and we have no control over what our children do in the prison. My son was using for a year after he went in, his first use of heroin was in prison because it was the easiest to get. I was scared for him. All I could do was limit what I sent him and when I sent it, making sure there was no schedule so that it was harder for the dealers to agree to "advance" him because he was expecting a securepak or money on his account. At that time in Arizona the older white guys tried to keep the 25 and below off of drugs and tried to help them clean up. My son got lucky and someone paid off his drug debt, cleaned him up, put him to work, and it all happened at a time he was ready to follow through.

I can't understand it. Nothing I did worked. Wouldn't being in prison give you a wake up call? I don't have the answers. I do know in turn he has tried to help other young guys. I have watched him go from being still a kid at 22 to being a man at 28. I can see where he had good mentors in some areas (like treating your mom properly) to not so good in others (all the race rules in prison that feed prejudice). I can see where he has worked to better himself, from taking college classes to reading on his own to trading securepak items for Spanish lessons. I just hope the real world is not so overwhelming when he gets out that he backslides as he will be 5 years clean in December.

Mama31, I think the fear never goes away. I think we learn to live with it. But, then again, don't we always fear for our children? iIt's just in this instance we have a place to focus it? My daughter is a high school science teacher in one of the worst areas of WI. The police have already been present twice to break up fights in her classroom. I fear for her, but it's different because we aren't used to being afraid for teachers (though lately it is more common.) I think Prison is scarier because we have learned to be fearful of them since we were little kids and we see horrendous things about prisons in their history and in the pop culture of movies and tv.

We had no control over our children's addictions before we ended up seeking help here. We have none when they are in prison. My only rule has been that no matter what he does he knows I love him and I am there for him. I can't punish him for addiction, but I will do everything I can not to contribute to it.
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Old 10-04-2018, 06:19 AM
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The county jail my son was in, the deputy sheriff was arrested the following year by the FBI for being part of a gang that was bringing drugs across the border. Drugs are rampant in our society and while the punishment for any drug in AZ is a felony, the reality is that drugs are widespread within the prison. The last facility my son was at there was so many drugs they were cheaper than on the streets.

I don't mean to add to your burden just to let you know it's there and we have no control over what our children do in the prison. My son was using for a year after he went in, his first use of heroin was in prison because it was the easiest to get. I was scared for him. All I could do was limit what I sent him and when I sent it, making sure there was no schedule so that it was harder for the dealers to agree to "advance" him because he was expecting a securepak or money on his account. At that time in Arizona the older white guys tried to keep the 25 and below off of drugs and tried to help them clean up. My son got lucky and someone paid off his drug debt, cleaned him up, put him to work, and it all happened at a time he was ready to follow through.

I can't understand it. Nothing I did worked. Wouldn't being in prison give you a wake up call? I don't have the answers. I do know in turn he has tried to help other young guys. I have watched him go from being still a kid at 22 to being a man at 28. I can see where he had good mentors in some areas (like treating your mom properly) to not so good in others (all the race rules in prison that feed prejudice). I can see where he has worked to better himself, from taking college classes to reading on his own to trading securepak items for Spanish lessons. I just hope the real world is not so overwhelming when he gets out that he backslides as he will be 5 years clean in December.

Mama31, I think the fear never goes away. I think we learn to live with it. But, then again, don't we always fear for our children? iIt's just in this instance we have a place to focus it? My daughter is a high school science teacher in one of the worst areas of WI. The police have already been present twice to break up fights in her classroom. I fear for her, but it's different because we aren't used to being afraid for teachers (though lately it is more common.) I think Prison is scarier because we have learned to be fearful of them since we were little kids and we see horrendous things about prisons in their history and in the pop culture of movies and tv.

We had no control over our children's addictions before we ended up seeking help here. We have none when they are in prison. My only rule has been that no matter what he does he knows I love him and I am there for him. I can't punish him for addiction, but I will do everything I can not to contribute to it.
It really helps to hear your thoughts, and it helps give me perspective. Thank you so much.
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Old 10-04-2018, 04:21 PM
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The county jail my son was in, the deputy sheriff was arrested the following year by the FBI for being part of a gang that was bringing drugs across the border. Drugs are rampant in our society and while the punishment for any drug in AZ is a felony, the reality is that drugs are widespread within the prison. The last facility my son was at there was so many drugs they were cheaper than on the streets.

I don't mean to add to your burden just to let you know it's there and we have no control over what our children do in the prison. My son was using for a year after he went in, his first use of heroin was in prison because it was the easiest to get. I was scared for him. All I could do was limit what I sent him and when I sent it, making sure there was no schedule so that it was harder for the dealers to agree to "advance" him because he was expecting a securepak or money on his account. At that time in Arizona the older white guys tried to keep the 25 and below off of drugs and tried to help them clean up. My son got lucky and someone paid off his drug debt, cleaned him up, put him to work, and it all happened at a time he was ready to follow through.

I can't understand it. Nothing I did worked. Wouldn't being in prison give you a wake up call? I don't have the answers. I do know in turn he has tried to help other young guys. I have watched him go from being still a kid at 22 to being a man at 28. I can see where he had good mentors in some areas (like treating your mom properly) to not so good in others (all the race rules in prison that feed prejudice). I can see where he has worked to better himself, from taking college classes to reading on his own to trading securepak items for Spanish lessons. I just hope the real world is not so overwhelming when he gets out that he backslides as he will be 5 years clean in December.

Mama31, I think the fear never goes away. I think we learn to live with it. But, then again, don't we always fear for our children? iIt's just in this instance we have a place to focus it? My daughter is a high school science teacher in one of the worst areas of WI. The police have already been present twice to break up fights in her classroom. I fear for her, but it's different because we aren't used to being afraid for teachers (though lately it is more common.) I think Prison is scarier because we have learned to be fearful of them since we were little kids and we see horrendous things about prisons in their history and in the pop culture of movies and tv.

We had no control over our children's addictions before we ended up seeking help here. We have none when they are in prison. My only rule has been that no matter what he does he knows I love him and I am there for him. I can't punish him for addiction, but I will do everything I can not to contribute to it.
Great post, liz. I especially like the last paragraph and am reminded that we also have no control when they're out of prison. That is where we have to hope that their sobriety will continue and that the years of incarceration will be enough to deter them from returning to their addiction and/or prison. Loving them is the easy part, but living with the uncertainty is what I find difficult.
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Old 01-16-2019, 07:48 AM
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Great post, liz. I especially like the last paragraph and am reminded that we also have no control when they're out of prison. That is where we have to hope that their sobriety will continue and that the years of incarceration will be enough to deter them from returning to their addiction and/or prison. Loving them is the easy part, but living with the uncertainty is what I find difficult.
Being married to an alcoholic and working for one at the same time, uncertainty was constantly on my shoulder. My son living with me on probation out of WI prior to this go around, I knew he was using. Worrying over it each day was part of my existence, but the fear of him dying was the worst part of it all.

Learning how easy drugs were to obtain in prison, I spent the first year stressed over trying to control it. Eventually, after a couple of years of him being clean, I stopped worrying about it until the reality of he will get out soon and will he be able to deal with being out and not go back to using. I suspect that my fear of him using will be with me for a long time and I have made the conscious choice not to let it overwhelm me.

Being aware of what he is facing after 6.5 years in prison, taking reasonable precautions with my medications, but I hope to use my energy to support his success rather than to worry over what I can't control. My belief that he has overcome and will succeed in his life is sincere. Most of all, I know that he is not set on self-destructing, which he was before he went in.

"Loving them is the easy part, but living with the uncertainty is what I find difficult." ----------- Such a true and succinct statement. I think somewhere over the last 5 years, I accepted that it's all uncertain. I lost my marriage (my spouse announced he was a woman); my son went to prison; my career ended due to disability; my mother died suddenly. The bilateral neuropathy results in I don't know day to day what I will be able to do and, worse, from hour to hour. Now, how to live with the uncertainty, is really the challenge.
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Old 01-16-2019, 07:59 AM
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Oh, wow, I can see why your son didnít bother to listen to his dad. I probably would have felt the same way. I agree... drug addiction and alcohol addiction are the same. Alcohol is a drug, itís just legal and accepted most places.

You know, I was with a guy just like your ex for a long time. We all partied together when we were young and stupid, and everyone grew out of it but him. I think heís something called a functional alcoholic. It took me years to realize it because Iíd never been around an alcoholic. I always thought it was strange that his parents never had wine or beer at family gatherings like my family did, but after being with him for a couple of years, I figured out why. Heís divorced and has two kids now from what I hear. I hope for their sake heís stopped drinking.
Dad (my first husband) quitting drinking because of the Lyme's disease, didn't last. He started calling me in December, drunk. He wanted me to come for Christmas dinner with our daughter and granddaughter (and to bring manicotti). I declined and didn't visit him and his mom (who is wonderful woman who will be 103 next month). My choice not to deal with it or to put up with him during my holiday time. I had hoped for a better outcome for my children's benefit, but I wasn't surprised or disappointed. Sadly, our 3-year old granddaughter finds him scary.

My daughter has positive memories of her dad because she had the benefit of growing up for 10 years, between ages 4 and 14 with a sober dad. Our son doesn't have those, as dad resumed drinking when our son was 9; he just knows a dad who is drunk, was never there for him, and refused to pay his child support. Dad has not sent him a card or had any contact since our son was arrested. He will change the subject when I bring up our son. Whatever relationship they have will be up to them. My plan is to stay out of it, neither advocating nor dissuading. I do hope dad living on grandma's property doesn't prevent my son from wanting to see his grandma often as at 103, despite her appearing to be pretty healthy, I just don't expect she will have much time left.
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Old 01-21-2019, 04:49 PM
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Dad (my first husband) quitting drinking because of the Lyme's disease, didn't last. He started calling me in December, drunk. He wanted me to come for Christmas dinner with our daughter and granddaughter (and to bring manicotti). I declined and didn't visit him and his mom (who is wonderful woman who will be 103 next month). My choice not to deal with it or to put up with him during my holiday time. I had hoped for a better outcome for my children's benefit, but I wasn't surprised or disappointed. Sadly, our 3-year old granddaughter finds him scary.

My daughter has positive memories of her dad because she had the benefit of growing up for 10 years, between ages 4 and 14 with a sober dad. Our son doesn't have those, as dad resumed drinking when our son was 9; he just knows a dad who is drunk, was never there for him, and refused to pay his child support. Dad has not sent him a card or had any contact since our son was arrested. He will change the subject when I bring up our son. Whatever relationship they have will be up to them. My plan is to stay out of it, neither advocating nor dissuading. I do hope dad living on grandma's property doesn't prevent my son from wanting to see his grandma often as at 103, despite her appearing to be pretty healthy, I just don't expect she will have much time left.

Wow, you have been through the ringer, Lady!

Divorce is hard enough, but when you add all of that other stuff on top of it, WOW. I went through a divorce many years ago, but we had no children and so had no reason to be in contact with each other afterward. He was also an alcoholic like your ex, and heís a brilliant scientist and has sociopathic tendencies. Isnít it amazing how easily we could be fooled when we were young? I had never been around a true alcoholic and assumed heíd just outgrow the drinking like most college kids, especially because he was so incredibly smart. He didnít. Why I assumed all smart people would be kind and empathetic, I have NO idea. I actually know another guy who has practically the exact personality! Itís almost as if their brains were wired with so much intelligence that there just wasnít room for the kindness part, but I know other people who are just as intelligent who are unbelievably kind and compassionate, so I know itís not that. Of course, I was totally manipulated and charmed until shortly after our marriage when he decided to show me his true colors and violent temper. I stayed married to him for three years because I took my vows seriously, and I did truly love him. He tried to continue contacting me after the divorce, but I just couldnít handle it because I knew heíd suck me right back in. We had already done that little dance for years. He was the one who wanted the divorce, so why he tried to stay in contact with me I have no idea unless it was an ego thing to string me along, but once everything was final I was able to cut him off. I felt like a huge weight had been lifted from my shoulders. I did miss my in-laws very much because they were very kind people, unlike my ex, and they didnít deserve to be cut off, but it just hurt too much to stay in contact with them. I still miss them.

Youíre in such a different situation though since you have children with your ex. I sure hope your son does keep up his relationship with his grandmother, but it sounds like he should visit when his dad isnít there if at all possible. I know that you donít have any control over this, and I think it may be difficult for him to make that happen, but maybe seeing his dad if his dad is still drinking wouldnít be the best thing for someone coming straight out of prison and trying to stay sober. It also may put him into a strange mindset, and you and I both know that our kids have emotional problems that we donít understand. Gosh, a sonís relationship with his father is such an important thing, but how do you fix that when the father is still so screwed up? I think your son will have to be in a strong mental space before he decides to deal with his dad, but of course heíll have to make that decision himself. I think youíre wise not to get too involved because you KNOW someone will try to blame you for something if you do. You almost canít win except to tell your son to get some counseling about it if he can in order to prepare himself to see his dad. He has to be able to know deep down that he is NOT like his father. I worry about that for my adopted son too because his biological father was in a gang, and people keep trying to recruit my son into gangs. (The funny thing about that, as I think you know, is that his biological dad was in a Mexican gang, and my son looks like he could be a poster child for the Hitler Youth! He doesnít look Mexican at all and is being recruited by the white gangs! This whole thing would be funny if it werenít so scary. I really wonder what would happen if those white guys knew heís 1/4 Mexican.)

Weíre worried about our son in a little different way... the few friends he has left are still using (I assume.) One is a guy who would sneak into our yard at night and throw drugs up to our sonís window when he was on juvie house arrest! We ended up installing cameras and motion sensor lights to try to keep that from happening, and Iíd randomly let the dogs out at odd hours. (Our dogs arenít mean, but theyíre pretty big and will bark if someoneís in the yard.) Weíd love for him to cut contact with this guy, but we have no control over who can correspond with him, especially now that heís 18. At this point, heís so bored that heís thrilled to get letters from him. He also likes to hear all of the gossip. I just wish heíd understand that the lifestyle most of his friends are still living will just lead him back to prison.

I hope your son can understand that just because a guy gave him half his genes doesnít mean that he has to be like that person. Iím trying to teach my son the same thing. Iím sure there are some things that are genetic, but if our kids are determined not to be alcoholics or addicts, they can do it. It will be a difficult road, but there are many success stories out there. My SILís parents are both alcoholics, and she and her sister, their only two children, are not. Even at the AA meetings Iíve attended with my son, weíve met many people who have been successful. Theyíve also been very kind to us. I have hope, as long as my son is willing to seek help for his depression and to commit to being sober.

Itís the self-medication aspect of the depression thatís so bad. Heís in so much mental pain. I wish I could help more in some way. Itís all so confusing.
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Old 01-27-2019, 11:14 PM
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Default An interesting observation and reasonable concern

I can't find the delete button for the comment, as I meant to start a new thread, so deleted contents.

Last edited by lizlizzie2; 01-27-2019 at 11:18 PM..
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