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Posted 4/24/2014 8:30 AM (GMT 0)
So I was diagnosed with lymes last year. I was bitten by several ticks three years ago, two gave me bullseye rashes. I started having flu, fatigue, neurological and joint pain symptoms.
I was also bitten by ticks as a child, at age 6 I had a tick in my head that gave me a rash as well. the lymes doctor and and llnd both told me they felt my mom gave it to me and or I contracted it as a child. I had a lot of weird medical issues as a child. I was born with my hips turned in and had to wear braces and they never really got it right. The list is long but I honestly didnt expect the lymes doc to say that all those things that happened as a kid were lymes.
I've never been good with going to the doctor at the onset of symptoms. For example, when I was in my early 20s, I fractured my shoulder and tore my rotator cuff and I convinced the EMT I was going straight to the ER and just didnt want to pay for an ambulance but then I didnt feel like waiting in the ER so I went home and everyone around me said there is no way I broke it if I wasn't screaming in pain. Well after about five days I couldn't stand the pain anymore and went to the ER, where they were shocked that I had waited so long. I did the same thing when I broke my foot, just waited a week until it was the size of a football and blue. I don't like taking medicines I don't need but some of it I think comes from experiencing abuse when I was young. I struggle with feeling like I don't deserve things.
Anyway I guess I've had lymes my whole life, but because I didn't know it, the times I was sick for weeks in bed didnt seem so dismal I guess.
The ticks that bit me a few years ago must have been super lymes bugs because I so ill I don't know where to start. I am very sick. I cannot care for myself very well. I can't breathe or even talk without chest pain. My back hurts constantly, always around the spine where it feels inflamed. It keeps me icing it, and taking baths trying to lessen the pain. I don't sleep much, when I do I have nightmares, I wake from muscle spasms that sometimes make me scream. I have intense joint pain in my shoulders, ankles, hips and hands. They swell up but the pain is way worse. I have terrible abdominal pains every day it feels like knives. When I get my period I have three to seven days, which is a blessing because it used to be longer, where I sometimes have to get medical care it is so intense. I have many times vomited and blackout from the onset of it. I grow cysts all over my body and whenever I get more serious about detoxing they tend to hurt and even get new ones. I constantly grow cysts in my ovaries that get too large and burst, needing medical attention. I can barely use my hands anymore, I am very arthritic. I have severe neurological issues that are debilitating for me. I can barely form thoughts. Certain herbs help and I take them before I come on here so I can write. I can't run a business or even hold a job right now. I lost my friends from being so weird when I didn't know I had lymes, I literally pushed them all away. The ones that are left don't understand what's going on, and they probably can't and won't be able to get it anyway. My family is not very supportive. But we have a hard relationship because we grew up in a unhealthy environment but none of them ever went to therapy and they can barely talk about it and deny it frequently. So all my elders are dead and my siblings are all just not wanting to deal with anything much less my illness.
The reason I am writing this though, is that for weeks now I have wanted to pass. I love life. It might not sound like it from what I wrote but I really love life. I love people and all their quirks. I love nature and exploring and travel. I love learning and culture and pushing my body and mind to new limits. I ran marathons as a kid and have always been a get up and go, live life to the fullest of kzevery minute. I felt trapped as a child and so any freedom I had I would cherish and when I got older I experienced a lot of death and loss and it again made me want to live every second to the fullest.
But for three years Ive been in and out of bed. This time Ive never been this sick, Ive been in bed since October. My home was robbed while ai was at the doctors. I couldn't afford insurance at the time and I lost a lot of equipment I needed for work as well as things like my moms wedding ring and photos. My dog passed a few months back and ai had her for almost 20 years. She was my best friend. She protected me and loved me. She and I climbed mountains together. Swam and surfed in oceans. I was abused as a child, and I don't blame him anymore, but that dog was there for me this whole time, making me feel loved.
Ive been engaged, Ive had many miscarriages, not realizing I had lymes. Im now with someone who loves me but is not handling this part of life well. Im not sure if it is lymes, but he has similar symptoms to myself a few years back and it's starting to really affect both him and me. He had no energy and his back hurts all the time. I feel terrible thinking he might have gotten it somehow. We don't get along. We can't seem to communicate well. We care about one another and he wants me to get better but besides his symptoms he is also very angry and can be negative and struggles with depression more than ai know how to handle. But he has shown me a level of compassion that it is so kind he really does want me to get better and to help me feel less alone.
I just want to feel better soon. I've been so sick in the last few weeks that I can't do anything. I can't even think. For about a year now I wait for someone to help me shower or help me make a smoothie. It's been incredibly humbling to lose my savings, my business, my lifestyle, my friends, and need someone to feed or clean for me. I often fear people will get tired of caring for me and I will be homeless. My neurological issues are really bad, I know it's hard to understand when I can write all of this but I spend most of my day with a blank mind or an inability to take thought to action. That's the worst is the feeling like I can't count on myself, it's been hard to understand. I hope to learn as much as I can from all this experience has offered. I just feel like I can't take much more of the blank lymes brain thing. I used to think all the time, I couldn't even shut it off in my sleep. Now it's like Im watching my mindless thoughtless self exist and nothing more. The pain of this disease is relentless at times but the neurological issues make me feel dehumanized. I feel empty, like I am now just a shell of a person and the mind and soul has gone. My heart is still here though! I love all of you for supporting me and each other during this journey. Thanks for sharing and listening. I just need a little help. Thanks
Posted 4/24/2014 8:55 AM (GMT 0)
hi roots, your post broke my heart. I can identify and I feel your suffering. we have a similar background. I am a victim of child abuse and neglect. my family is very dysfunctional and I have been in therapy several years to heal my emotional pain, and trauma. but they are in denial, very narcissistic, and have abandoned me over and over including one time when I attempted suicide by taking 10 pills.

I have been chronically ill real bad for 10 yrs but I started having health problems 20 yrs ago. I was a avid gardener, horse rider, working full time as a RN, and I have pets. my llmd said I may have had lyme all this time. my first diagnosis back then was fibromyalgia, then it morphed into poly drugging being told I had anxiety disorders, depression and bipolar. I am taking bipolar medication for anger episodes but I feel my illness is causing this.

by 2007 I gave up on life. I crashed and I had had it with suffering. I got on methadone for pain took klonipin and just was all doped up, applied for disability and got it due to several psychiatric admissions. but I have learned I am not crazy, just so hurt and wounded from my childhood, I still have much healing to do. but the disability has saved me, my health has deterioated. I have been in the house and in bed over the last 3 yrs most of the time. but I have improved some since last october when starting antibiotics.

I too feel I have lost my diginity and self respect. I am a RN been a charge nurse, manager, worked in all different fields, got into a masters program and had to drop out due to illness. I could be a nurse practitioner easy if I was well. my family does not understand nor has been there for me. I have a few people I talk too, but they are not the healthiest people, and I so want to go out and live my life again and make new friends. I still have one paso fino mare, sonadora, I love and I can't ride now due to my illness. I hope I can ride again some day. but I feel like a shell of the person I once was. I have been labeled and stereotyped as crazy by some, and it hurts my pride and wounds me so. I have helped hundreds of people over my nursing career, and I have been insulted that people do not respect my intelligence.

I lose hope alot of days too. but talking on here has helped me so much. I also have a therapist i see online and much of my healing is emotional too as well as physical. many years of pain I have carried like a monkey on my back. don't lose hope. you can rebuild your life. so many days I lose hope. could you get another little dog? or a puppy? I think it would help you so much even if just adopted on already house broke. I so love my boo, a little maine coon tabby, and I tell her every day I love her and I am gong to live so I can be there for her and she will not have to die alone. she makes me so happy. my husband is supportive, I am proud I do have that.

I feel terrible too but slowly I have improved you can too. sincerely jackie you are in my prayers tonite.
Posted 4/24/2014 11:58 AM (GMT 0)
Hi Roots,

Your post almost made me cry... I'm so sorry life has made you jump over a lot of obstacles...

I hope that you can overcome these dark feelings, I really do, cause like you said: you do love life...

I might maybe get some reactions on this, maybe not, but have you ever considered working on your inner child. I had a troublesome youth because of a mentally abusive mother, and working on my inner child has helped me. Do you have the financial possibilities to see a therapist who can work on that with you?

Do you take any contraception? I was in so much pain before, but then my llmd adviced me to choose the vaginal ring. It's easy, you just need to think about it twice a month. It considerably shortened my period to 2-3 days, I don't have excrutiating pains anymore.

Is your partner willing to get tested or see a llmd? It could explain his anger, negativity and depression? Or he just feels he can't fix this, and that upsets him?

I can't remember all the member's treatments, but what are you doing now as a treatment to fight the infection?

I know about the pain, it drives me crazy, the inflammation is horrible, it doesn't leave one part of your body alone. I saw my dr yesterday (unexpectedly) and he wants me to go on ldn (low dose naltrexone), he says it could bring down my pain levels considerably. I have no experience with it, so I can't say it works out of own experience. You could talk to your dr about it??

Please hold on, many of us got better, even the ones with infections that were up to 40 years old.

And PLEASE come on to the forum if it's getting too much for you, we are here to help you. Knowing that someone will listen what's going will take some of the edge off.

MarieLS 

 

Posted 4/24/2014 12:25 PM (GMT 0)
Hi Roots, I'm so glad you came on here to share and let us support you with thoughts, prayers, and suggestions. I don't have anything at this moment to suggest but I wanted to let you know that you're in the right place to talk about it-I've not seen judgement here and it is very safe to let your thoughts out. My hat is already off to you as a nurse--I've had amazing nurses over the years for various things and I have such respect for them. I know I couldn't do that.

There are always people who care and you have found them here.
Posted 4/24/2014 12:40 PM (GMT 0)
Roots,

I'm sorry to hear that you are suffering. I can't imagine what it has been like to have been sick for so long. I have only been sick for a few months and there were days that I just wanted to die too. One day I had a completely normal GI system and the next it was totally dysfunctional. I can't even enjoy food or my favorite coffee anymore without getting I'll.

The other day I was reading an article online and I didn't recognize the town mentioned even though I had worked there for 10 years. I don't even enjoy watching anymore TV either, like my brain can't relax.

My husband of 10 years has turned into a yelling toxic mess. I used to do everything but he can't handle the stress of me being dysfunctional. It's taken a huge toll on my kids and me. It's just awful. He just expects me to be immediately better and it doesn't work that way. He is almost worse than this illness.

I read about a woman who was bedridden for seven years who finally got het life back. I do think we can all get better, unfortunately it just takes awhile.

You'll make it, I'm praying for you.
Posted 4/25/2014 8:34 AM (GMT 0)
Mystery1, reading your post really touched me. We do have a similar experience. Im so sorry to hear you went through such an unhealthy environment and that you are still dealing with the denial of others. That can be the worst part you know? Just wanting to work through the tough times with family instead of alone. I am so sorry to hear you felt abandoned during a time when you needed people most. Im glad that you are here now though. You seem like a kind hearted and loving spirit and the world needs people like you.
You have been in the house for three years? That's just like me too. For some reason my immune system can't seem to get strong for long enough to get back out into life again. I will be praying for you to regain your freedom and especially to be able to ride. I can tell you truly love horses. I believe you can get better, we both can! Wow it sounds like you have helped a lot if people with your career and in life, be proud of that. Whenever I have to go to the ER and I am in screaming pain, it's people like you that make me able to not just break down into tears and breathe through the pain. I am so grateful for people like you. Im glad to hear you have a tabby to love and a husband that is supportive. It's so nice of you to share with me your life experiences. It made me feel less alone. Thanks Jackie.

Marie, I agree with you. Working on my inner child is great advice. I was doing this with a therapist but just currently lack the resources to see her. She really helped me try to embrace and gently care for the child inside me. I went to a great person for a few years but I really think I could benefit from seeing her as soon as I can.
Thanks for the ring suggestion, I tried it, as well as depo, and BC but those and other treatments don't lessen the pain. Just last week an ER doctor told me if it was her she would get a hysterectomy because Ive exhausted all the known options. I've had specialists say this too but I just haven't gone any further with it for now, I obviously need to though.
My boyfriend is willing to be tested. Im thankful for that.
Right now Im taking herbs, have a strict diet and do lots of detoxing. The herbs are a mix of my llmds original suggestions, dr Jernigan and a Chinese herbal docs plan. I think whats going on is Im detoxing too much and herxing all the time?
I spent the day yesterday vomiting hard and fast, sweaty, dizzy and unable to get out of bed. I haven't heard about naltrexone. Ill research it. Thank you so much for all you suggestions and support. It is so amazing how you are so gracious, really thank you. It is so so helpful to feel like we can all support one another. Thanks Marie I wish you the best.

Ksgirl67, thank you, your kind words are better than advice sometimes! I will be wishing you and your boy health and happiness.

Louise74, thank you for you support and kindness. I know what you mean. I can't even drink coffee. I miss all the foods I used to indulge in. Currently, my tract isn't even digesting food and I have such severe bloating and cramping and pain from every food that I eat blended veggies or I suffer a lot. I hope your GI system bounces back. I've healed mine better than this before so I think it can be done.
Im sorry to hear your having memory loss. My heart goes out to you. That's hard. Try to not allow stress in, I know it's tough but I definitely think my neurological issues are worsened from stress like fights with my boyfriend.
I hope your husband can learn to better accept your health. My boyfriend was a yelling mess for awhile and he calmed down a little, he's not so screaming and stubborn as he was but still struggling with it a lot. I asked him to come to appts and read stuff online, it may have helped because he talks to me about it more now than just looking away. Maybe try to get him to hear your illness from someone else's words? I wish you the best with both your hubby being more supportive and your health being the best. Thanks for your kindness.

I wrote the original post and started feeling really dizzy and sweating and vomiting and was just miserable until tonight. I was blown away to have such a crappy feeling day and then get such support from you guys. Thank you so much.
Posted 4/25/2014 9:10 AM (GMT 0)
You're very welcome Roots :-)   I too wouldn't know what to do without the forum, it is a great place to be at.

I was thinking about something. I'm reading about prostaglandins a lot latel, cause my PGE2 is very high.

I'm just copying some stuff here, cause I have a severe headache:

PGE2 can be very high in Lyme patients that are undergoing treatment.

PGE1 and PGE3 are good prostaglandins, but if your PGE2 is way out of balance, you will need to balance the ratio between PGE1-PGE3 and PGE2. This can be done by taking high dosages of Omega3.

Have a look at this:

The minerals zinc and vitamin B6 are also important for the correct metabolism of fatty acids and their conversion to beneficial prostaglandins (PGE1 and PGE3). Certain prostaglandins e.g. PGE2 can be negative in high amounts. In particular, PGE2 is a highly inflammatory substance that can cause swelling and pain and also thicken the blood, which can then cause congestion and stagnation in the pelvic area.

(this is where I got this piece: http://www.marilynglenville.com/womens-health-issues/endometriosis/ )

Why don't you try to take high dosages of Omega3 and see if that helps with your severe PMS like symptoms?

I hope you understand what I'm trying to write. I don't have much time for now, but I needed to give you this information.

I'm not a dr, but this is what my dr prescribes me.

Posted 4/25/2014 1:23 PM (GMT 0)
Your post really breaks my heart.... You shouldn't have to suffer like this physically, mentally and emotionally. I understand and relate to everything you wrote. I was sexually abused for 13 years by my dad and have a screwed up family. Thankfully my dad passed away when my daughter was 7 months old so I wouldn't have to worry about her being around my dad.

I take prescription pain meds for my pain - Tramadol. It literally gives me my life back. Otherwise I would be a mess mentally and pain wise. It not only takes away most of my pain but also diminished most of my neurological symptoms. I get more energy and am able to focus better. This has helped me to keep some of my friends. Otherwise I know I would have none if I didn't take the pain meds. Also when you're out of pain, you can think more clearly about your disease and pursue proper treatment. I would consider discussing it with your Dr. Or a pain management Dr.

It really breaks my heart that you're in so much pain. I just want to go over there and give you a hug and help you get out of it.

I'm so glad you reached out. This place has so many sensitive, caring people that don't judge at all. We've all had some kind of life battles. Just Lyme alone completely humbles you and gives you a different outlook on life.

Don't ever think you are not worthy! You are just as worthy as the next guy! Everything you have gone through in your life is not caused by you, you are not to blame! You were an innocent child growing up with an abusive family. You actually deserve the world for what you've endured!! Don't let anyone make you think you're less than you are! We will get through this together! From all this you will gain strength and start anew. You are not alone... We'll help you with every step forward.

Many, many hugs!! Keep the communication lines open! :)
Posted 4/25/2014 2:40 PM (GMT 0)
Roots- don't give up. Have to ask. What's TRU located in and are you on any treatment from a LL PSYCHIATRIST or LLMD?

If anyone is in need of a LL PSYCHIATRIST in nj, please let me know!

Xoxo
Posted 4/27/2014 2:03 PM (GMT 0)
Sorry for the delayed response, my dizziness and nausea slowed down but Im still vomiting 2-3 times a day.
Thank you Marue for your advice on prostaglandins. I so appreciate the help. It's interesting because I used to take fish oil daily and lately I haven't been having as much omegas because my stomach is so upset. But Ive been reading about Dr. Budwig, this cancer curing doctor who was from Germany She would make quark cheese with flax seed oil, the sulfur from the cheese activates oxygen into cells. People substitute cottage cheese. Whether or not it cures cancer, getting more oxygen in cells and taking more omegas sounds good. Thank you for reminding me about the need for omegas, I keep forgetting all these things. I don't know what so would do without your help.

Inspiredby3, it just tears me up to hear you endured that pain. You deserve endless happiness and your forgiveness and strength is beautiful. Thank you for sharing with me. I so appreciate your support. It means so much to be able to relate with someone like you, because of the denial if others it's very meaningful to be able to even just talk about it a little. Thank you. You too deserve love and joy every day. Im so glad to hear that Tramadol is working for you. I didn't have the same luck but I think you are right. Pain is hard to deal with all day and night and I do need to readdress my pain management. I went to a specialist and they okd me for pretty serious pain meds but I just can't afford going to the non lymes doctor right now and my body was starting to really dislike the side effects. But it's to that point of the quality of my life being more compromised than the side effects of the medication.
I really thank you for both sharing your personal pain and your experience with lymes. It means so much.
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