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Posted 12/4/2012 1:24 AM (GMT 0)
I just wanted to do a little update. I went to see my regular doctor today, because of bleeding I had to see her. Well she took me in her office, now I am been a patient for over 7 years.

She said that the doctors here are afraid to treat us Lyme patients. I am not new to Lyme, I am in a later stage not sure what stage I am in ,but with the seizures , and stuff, I have been sick for a while. She said she is afraid to run the test she wants to run, I have to go out of the state for treatment.

As first I got really upset, crying, and then I got angry. Who gives a insurance company a right to decided you should be treated? How can anyone put a price on a person's life?

I am angry, very angry. If we had a different disease there would be help out there for us, now it's sorry I can't help you, I know you are sick but I can't help. Something has to change. We have to fight, fight for the people that are losing their life.

I am going to see another doctor in a different state when I can afford it. This disease stinks.
Posted 12/4/2012 1:45 AM (GMT 0)
Traveler, I can so relate to wondering how much of your life can be devoted to support others because it does take alot of time to post and support others.  I did that on another forum for benzo withdrawal and Levaquin toxicity support.  I wouldn't have taken away one minute for all the wonderful people I met.....but sometimes there is a point when life must go on to do your own thing.  That being said, I would miss your wise and informative information that you so willingly provide to all of us.  You are a true guardian angel and I thank you from the bottom of my heart.

summer16/Patty  xo

Posted 12/4/2012 2:33 AM (GMT 0)
Marie, too I can identify so much

big sigh, it helps me, deal with nonsense disease

thanks for sharing. Garfield u 2, I always say I hope I get my brain back

it helps me feel like I am not the only one on the planet with the most abscure things going on
like now, my veins are popping out of my hand, inflamation, looks creepy

I am very anxious today for whatever reason, anywhoo, hugs to all.
Posted 12/4/2012 8:25 PM (GMT 0)

summer16 said...
Traveler, I can so relate to wondering how much of your life can be devoted to support others because it does take alot of time to post and support others. I did that on another forum for benzo withdrawal and Levaquin toxicity support. I wouldn't have taken away one minute for all the wonderful people I met.....but sometimes there is a point when life must go on to do your own thing. That being said, I would miss your wise and informative information that you so willingly provide to all of us. You are a true guardian angel and I thank you from the bottom of my heart.
summer16/Patty xo

Awww, Patty!!
Thank you so much for your kind and supportive words! I too wouldn't take away one minute that I spend on here, but sometimes things happen behind the scenes (as you know) that really make you wonder why you are doing all that you do for those on that forum. This has happened several times over the last whatever that I've been a Mod. I thought I would toughen up, but alas, I guess I'm a softy at heart! LOL! If only all those that swear I'm a hard-*** knew!!

I'm not going anywhere though, I don't think I could stand not being here to help those that want my help and experience - so you all are stuck with me! smhair So I do hope that everyone can put up with me! turn giggle!

Thank you so very much for sharing your time as a Moderator! It really helps knowing that I'm not alone in that either!
Posted 12/4/2012 8:34 PM (GMT 0)
Justme,
My heart broke reading your latest post in this thread!! cry I know exactly what you are feeling! I had that happen to me back in 2007. Not one single doc would take me! The unlucky soul that finally ended up treating me (he was just opening his practice and I didn't have to tell him why I wanted to be seen!) until I could find a doc that would treat the Lyme, did all that he could without jeopardizing his license, and he did help some, but I had to direct every test and every treatment. Not the way to go!!!

Hang in there! Here's how you get your revenge: once you get to feeling a bit better, you can find ways that fit into your routines to help out. You can help out at a local support group, write letters to the editor of you local papers, help to encourage doctors to get their Continuing Education Credits by taking the ILADS training course, help out on this or anther forum, or many other things you can do to help raise awareness! I also plan to open a support group once I can spend more time away from the house without being completely exhausted and unable to function the next day. Talk about stirring the pot around here!! turn LOL!!!
Posted 12/5/2012 12:19 AM (GMT 0)
It's just very frustrating. I called so many different doctors, most of them within a two hours span of my house is out of business , or not taking patients. Some charge per test, so to walk in the door its 1000. What gets me Is I pay 600 a month for insurance I can't use for a doctor I can't see.

I feel I am getting worse, I forget things, the pain is worse, not to mention the seizures. I can't just sit back and let my life slip away, I won't do it. I want to get better so I can help other people like me and like all of us on this website. If it wasn't for this site giving me hope I don't know what I would do. I feel desperate today, I am having complications with the doxy, but I am scared to not take it, because I may get worse. I understood my doctor has a family, but it really upset me, that she couldn't really help in anyway.

I am just upset today, in pain, and foggy. It's kind of my life right now.
Posted 12/5/2012 10:02 PM (GMT 0)
Justme,
I sent you an email, I hope you don't mind.

Hang in there! We can all understand why you are upset and frustrated!!

Once we start making enough noise, then people will have to listen to us. It has to be a real 'grass roots movement' and that's hard to do when all those that would be down in the trenches with you are too ill to leave their house most days!
Posted 12/6/2012 12:46 AM (GMT 0)
I try to stay positive, but as a whole, this is hell.

fiances gone, my whole life, I am the opposite of who I was,

all I do, is surf computer, channel surf, write notes, cause I cant remember anything

and write in my calendar .... Dr. appts, or I cancel dr appts, cause I know they will not help
and deal with insurance and go to the bank and withdrawl withdrawl, with noting coming back in...

ugh I am writing a book too about this.

my life is just going to health food store for glutten free foods and supplements

it is so old..... so old, I am tired of it, really.

The movie Ted is coming out soon, going to buy when it comes out soon, maybe and watch it 10x till I am bored
ouy, my life... :)

love, love u guys, thanks for being there,
Posted 12/6/2012 1:02 AM (GMT 0)
I did a email, just responded. Thank you all.

Post Edited (Justme4508) : 12/5/2012 6:56:40 PM (GMT-7)

Posted 12/6/2012 4:56 AM (GMT 0)
Hello, I'm a newbie. 42 year old single female no children. Diagnosed in Oct 2012. I already know more about Lyme than the doctor who diagnosed me and the ID I was referred to this week. My next step is going from Las Vegas, where I live, to Los Angeles (that's 5 hours with no traffic each way) to get a LLMD. I've had neurological symptoms for 10 months before diagnosis. I HATE this disease. I hate gluten free food and no sugar. On the plus side, I've lost almost 10 lbs since changing my diet 2 weeks ago, but in all the research I do, the doctors tell me the opposite. I just want a doctor who will stop pretending to know all about it from what they read on CDC.gov and tell me the truth. I want the truth.

I'm thankful to have found a site where people understand. I read the entries above and I feel the same! I want my life back! I don't care if I have to forego eating a meal or two a day if I have to. I already had to move in with my mom because of lack of $, and now I will do what it takes to get myself well. No illiterate Lyme doc is going to be in charge of my case!

Thanks for listening and may we ALL get better soon.
Posted 12/7/2012 6:46 PM (GMT 0)
Hi Havelin!!
Welcome to our forum!! We have a great community here, and I'm sure you will fit right in!! Although I'm so sorry that you have the prerequisites for being here!

If you haven't yet, please do read through the "New to Lyme?Start here!" thread that sits at the top of the forum as it's packed full of important info, symptom lists, informative links and pdf's and even a list of questions that you can ask any doc that you are seeking treatment from!

I would also like to caution you to stay away from ID doc's and that you stick with the LLMD's that have gone through ILADS (International Lyme and Associated Diseases Society) training if you are wanting abx or abx and herbal treatments. If you are hoping to find natural/Holistic medicine docs to treat you, then you just need to be sure they understand Lyme disease.

It's good to hear you stand your ground!! Information is key and you sound as if you have a good start on it!

We look forward to interacting with you here! :-)
Posted 12/18/2013 3:00 PM (GMT 0)
I am having a rough time. My pain is getting to me. Its been a year now fighting and they say it will be longer. Its so tough to be emotionally physically drained. I push through. I knwo I need to be positive. THis disease has changed me as a person. I am so different. I knwo one day it will be different. I have to believe this or I would give up. And giving up is not allowed. I have a child who needs me. With this said the pain the confusion and brain fog dizziness and emotional tole will not win. MY body will fight and will win.....

I wish you all the same. I know we all have our own fight with this disease. But we have one another.

Wishing everyone health in the year 2014...

XOXOXOX blush

Posted 12/18/2013 5:50 PM (GMT 0)
Cyn,
Are you or have you seeing any improvements yet? You may need to switch protocols or maybe even switch doctors. Not all doctors are capable of treating all cases of these diseases, as they can take on such different clinical pictures.

Can you explain a little of what is going on with your treatments? Maybe someone here will be able to share some things that can help you get 'over the hump'?
Posted 12/19/2013 4:18 AM (GMT 0)
Im praying for everybody right now!!! The hardest part for me is i start to feel bettter, that i get excited, do too much and pay for it for days. Also my symptoms always flare during that time of the month as well as ovulation!!! That means i pretty much flare all the time!! I often wonder what all these antibiotics are doing to my body as well as all the supplements. Thank you all for being here, everyone on here has more strength than they know!!!!!!!
Posted 12/19/2013 7:11 PM (GMT 0)
i am

i spent even more money for a differnet dr, and was only a bit better while on his protocol

and then it didnt work

it just bought me time, to be here

I am so tired, i was just resting on the carpet, cause my housekeepers are suppose to come soon

i can not survive without extra help

i am so exhausted, i cant even sit

beyond tired and sick of this disease, only one percent better

i still feel like my brain is in a fog, disconnect

lord have mercy, if i could just get my cog funct back, that would be great

another yr

maybe next yr, more progress for all!
Posted 12/19/2013 8:26 PM (GMT 0)
*sigh* I waited a while to post to this thread. I feel so much of the same things that everyone is saying. I feel guilty for feeling this down, because I don't have as many problems as some do, but I'm sick of the pain. I'm sick of the lack of understanding from people around me, and I'm sick of faking a smile on a daily basis, and I'm sick of people asking me if I'm ok! Because the answer is, no I'm not ok. I'm a physical and mental wreck.

I hurt, I don't feel good and no one in really "gets it", except for the people here. I feel like I'm less of an employee at my job, less of a mother to my children and less of a wife to my husband because of what this disease has taken from me.

I try so hard to stay positive, to not complain and to keep pushing on, that I think I end up making myself feel worse. I'm very bullheaded, and independent, so I don't complain at home or work, and I don't ask for help. I try to do all the things I used to do on my own. I can manage most days, but by Friday, I'm done, I feel like I have to sleep my weekends away in order to function the next week.

I feel blessed though, that I have a great ND and an LLMD on my side, I have this forum and just found a small support group in my area and the first meeting is on 12/28, looking forward to it.
Posted 12/20/2013 4:24 PM (GMT 0)
We all get down due to what we are forced to live with when we have these infections - why wouldn't we? We are just human after all!!!

Why not have some scheduled 'down time' then? Many of us here are of the same personality - pushing ourselves constantly to maintain, when what we really need to do is to allow our bodies to take it easy so that they have the energy to do what we are asking of them - to heal from a very serious infection!!!

I've had to learn how to say no to many things in order to take care of my body so that I don't end up run down and in a place physically where my body can't hold up to what I ask it to do. Although I consider myself to still be healing from the effects of having these diseases for so many years, I doubt even when I no longer feel like I need to heal I will still likely decline to do some things. None of us are super-human.

We want to carry on like nothing has happened. I get it, I was one who tried the same strategy - although I failed miserably! LOL! In reality we are just as ill as someone with congestive heart failure!

http://lymedisease.org/news/hardscienceonlyme/lyme-disease-science-writer-repeats-standard-misinformation.html#sthash.00gmGayU.dpuf

"For example, at a February 1999 meeting, Mark Klempner of NIH clinical trial fame stated that the patients he enrolled in his study were “severely physically disabled, two to three standard deviations below the norm [Ed. Note: That’s huge.].” Klempner said his patients were as impaired as people with congestive heart failure, a state far beyond “the aches and pains of daily living” often cited by the IDSA propagandists – and repeated by Specter. (Lyme Times #24, Spring 1999) (Former NIH Lyme program officer Phil Baker was at that meeting, so we know he knows. Baker himself is prone to reciting the party line.)

Brian Fallon, Director of the Columbia Lyme Research Center, found the patients enrolled in his treatment trial were also very disabled. He wrote, “Compared with published samples, reports of pain were similar to those of postsurgery patients, fatigue was similar to that of patients with multiple sclerosis, and limitations in physical functioning were comparable with those of patients with congestive heart failure.” (Fallon, 2007) These are scientifically measured assessments against a widely used scale, not just guesses. Clearly this is not the common “aches and pains of daily living.”

This condition doesn't last a lifetime for most of us, so we just need to allow our bodies to heal, then we can usually carry on like we did before, only hopefully more aware and taking better care of our bodies. :-)
Posted 12/27/2013 7:23 AM (GMT 0)
Reading these posts takes me back.  Not very long ago, I was where many of you are now.  Severely ill for over 8 years, homebound for over 5, in horrific pain 24/7, abandoned by the medical profession, no hope of recovery...watching my life and the world as I knew it distort and slip away, and feeling like I had lost my soul to this disease.  I didn't even recognize myself or my actions; or feel part of the human race anymore. 

The physical pain and loss of cognition was unbearable, but the feeling of disconnect, and  loss of my human-ness was indescribable.  There was a constant deep grief over what felt like the loss of my spirit, or essence...everything that made me what I "thought" I was. Nothing was familiar.  I missed my own company, and hated the stranger I had become. 

What I didn't realize, was that there was a deep metamorphosis taking place.  Nobody could've convinced me of it at the time; in fact, it was suggested to me a few times, but I adamantly denied the possibility.  Even the suggestion infuriated me.  This was just too tragic to have anything good come from it.  But, I was wrong.

The good news is, there is a way through.  I am well now, and if it is possible for me to attain wellness in the state I was in, it is possible for others.  You don't have to have a good attitude (I spent a lot of time yelling at God and the Universe), but, no matter what, you have to keep yourself on the planet until things turn around. This is your job.  Keep searching, and keep taking care of yourself the best you can, because you will get through this, and when you do, you'll be glad you kept yourself here. 

Hindsight is an amazing thing.  I am now starting to see why this happened to me, the purpose of it all, and a slice of the amazing "master plan".  I have been granted a glimpse of the "birds-eye view", and I wouldn't trade it for anything.  There is a connectedness that I didn't have before.   I never thought I would actually say I was grateful for the experience, but my life has been incredibly enhanced by the experience in ways I could have never predicted or imagined, every single day. 

I hope this gives you hope and something to look forward to...

 

Posted 12/28/2013 10:24 PM (GMT 0)
Yeah Im really sick of this. I try to be thankful for the good days though. And the bad days, well I try to manage to find a way to reduce the pain, exhaustion and discomfort. I thank God for meds. The one saving grace is that it made me change some of the unhealthy aspects of my life, at least rethink them. Most of all I just wonder if I will ever feel normal again. Keep the faith. Hugs.
Posted 12/28/2013 11:20 PM (GMT 0)
((hugs)) to everybody here :( I am so sorry we have this disease and I wish us all peace tonight. I am sorry!!! One day at a time. Don't give in to this disease!
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