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Posted 10/31/2012 7:19 PM (GMT 0)
Alwysa just struggling through , not really enjoying anything , irritable because my breath is short and I feel on the verge of death , my body feels ancient and nothing is fun when your body is a heavy painful burden ( I am not talking overweight , I am talking weakness and pain ) ... but yet your "healthy" .

Trick or Treating is going to suck , I am having a big flare , I am not sure if it is still just repocussions of me eating gluten, sugar , wheat , alot of dairy all at once , its been 3 days since I ate all the junk , but I tend to have noticed that it can take a week on average to start  to feel a tad normal .

Can't get a straight answer , is it lyme is it food allergies , is it that the government is dousing us with chemtrails and biowarfare or is this damage from a virus .... or am i just plain screwed for no reason ?????? I hate not knowing WHAT it is , and if I'm on the right trail .

Last night I tried to wash some walls in my kennel that badly needed it , I was so weak that I had seizure like muscle problems with my arms and torso , I felt like I was going to collapse and die . It got late and I had to call my mother and wake her up to stay on the phone with me because I felt like I wasn't ok . My phone died and I had to carry the kids down from the kennel to the house , its about 200ft . .. and I had to sit down on the wet lawn half way because I was severely winded, aching all over and charlie horse like pain all over my body , I couldn't carry my daughter ( she's only 25 lbs ) ..

I am sick and tired of living like this and wondering how much worse its going to get , I am 36 ( feel 105) and this has been going on since I was 10 yrs odl , the better part of my life . What is this life all about ? pain and struggling ( and I am not talking about little  battles , I am talking feeling on the verge of suffocation, or death ) .

I get sick of people saying think positive , and sick of people saying to not be negative or not to worry . Sorry I guess I'm a failure m, because I am losing my outlook more often that not . There is no enjoyment when you are never in the moment because your physically so in turmoil.

I feel like my kids shouldn't even be with me because I have no patience because I am so sick all the time . I am not the person that I would be if I was not in pain and sick and weak . I snap at them for the normal kid stuff because I feel like an old dog that is hurting and being jumped on . Its not how I want them to remember me one day .

And to think that lyme is a manmade disease :-(

Posted 10/31/2012 7:25 PM (GMT 0)
Hi, I wanted to drop a line at your email, but unavailable,
I just wanted to say, I can identify with alot of what u wrote
chem trails, etc, does not help either. every body is different
how we can assimilate all this junk sprayed in atmosphere

I no longer believe in god anymore

are u close with the neighbors, or have supportive family nearby
just to give u a break with kids, even dogs for a few hrs,

It is insane, the pain, personality changes, temperment change,
I will scream to the heavens forever if this is manmade
but I feel it is, cause what it has done to my brain.

I have very little money left, everything i worked os hard for
everything I was, ....

I hear u. hugs. hugs not bugs.
Posted 10/31/2012 8:36 PM (GMT 0)
thankyou hope2bhealthy , I hear you on the God thing ,its very hard to know what to believe anymore . People are always quoting .. "everything happens for a reason " well enough is enough .. 26 years of feeling like total crap ...what would be the purpose of that ??? There is no good reason .

I am not suicidal but I often think of dying being a relief, and that is really depressing because I want to love life .. I tried to love life , but my body is too broken to enjoy doing it . I happen to be a hardworker and not someone who minds doing things the hard way .. but this dis"ease" ... it just takes that to a whole new dimension. I know people who go thru chemo and radiation who dont act as sick as I feel
Posted 10/31/2012 9:53 PM (GMT 0)
Oh you two, I'm so so sorry that this disease has taken so much from you. After reading both of your posts, I just had to respond, as my heart is breaking for both of you. I can honestly, really,

truly relate to what you are saying. That's why I stick around as a Mod here, I can't stand the thought of others going through all of that and not knowing what to do to help themselves! Although I

know I don't have all the answers, I do want to help as that was me back in '07, '08, '09! I just didn't think I could take it much longer.

I've had to think about how far I've come lately, so that took me back to the "bad" days. I'm normally a very active, happy and outdoors person. This set of diseases had me bed ridden and house

bound for more than just those three years I mentioned above - that's just the longest stretch of it that I've had. I was on track to be a good horse trainer back in the mid-80's, until one flare took

me out and I had to have surgery on a "perfectly healthy" knee. I had to rearranged my life once again.

Had two very hard pregnancies and had a terrible time recovering from them, but I had two wonderful children that kept me going more times that I can count - but that didn't take away the pain

and the constant exhaustion - plus all of the 'weird' stuff that was going on. But still kept on struggling to live somewhat of a life.

I've rearranged my life so many times thanks to this set of diseases. I've seen so many doctors too! I have literally run out of doctors to see before, as they would turn me away, cancel appts,

or just keep sending me away with nothing no matter how much pain I was in.

I got to the point where I couldn't tolerate temperatures above 80 degrees or below 72 - I'd get seriously overheated at 80 degrees!! and by the time it was 72 in the room I was in a heavy winter

jacket and a heavy blanket on my legs I was so, so cold. I couldn't tolerate a lot of foods, couldn't hardly communicate with even my own husband - there was a time where I really couldn't

communicate with anyone the words were all jumbled up and never made any sense. I couldn't follow directions - written or oral - or even follow a pattern (like putting together shish-ka-bobs).

My list of woes goes on and on, BUT - once I got into a treatment that was right for me and my body, it only took three months and I was noticing definite improvements!

Lotta, your saying that you often think of dying as being a relief - I know that exact feeling - it's so sad that it comes to us at such a young age - even if we don't feel so young. Hang in there! Once

you are using the right treatment for you, you will begin to see improvements in your life! Things will get better, so please just hang on!!! Hope2B had a good idea to see if there is

someone who can come in and just keep an eye on things while you go pamper yourself somewhere - even if it's in your own bathroom! Or better yet, go to a gym and use their sauna, or have a back rub!

Hope2B, although you've only just started treatments, I know that you have been suffering for a long while. You will begin to see the

world in a new light soon, I'm sure. Things will get better. You too must hang on!! Healing is happening!

Remember both of you, it took us a while to get this ill - a long while! I was first infected at a very early age as well. It's going to

take a while to get enough healing done where you can actually tell a difference, but it will come!

Thinking of both of you tonight, sending some healing, comforting thoughts....
and a few cyber hugs - ((((((hugs))))))

**Post was broken up as I know that it's hard sometimes for those who are really ill to read long posts that aren't broke into smaller segments.
Posted 11/1/2012 6:23 PM (GMT 0)
LottaAnsy-I hear what you're saying and can COMPLETELY RELATE. I often have those same thoughts and just want relief! There are many days when I really feel like I'm dying; I really wonder if I go to sleep if I'll wake up. Lyme makes a person so very sick, it can be unbearable!

And you're so right, how can you enjoy life when you feel like complete crap?!!? I can't count the number of times that friends and family have told me to enjoy each day as best as I can. When it comes down to it, they just don't know how sick we are. They haven't experience Lyme Disease. It's impossible to enjoy the day when you are so sick.

I have 2 young kids and I can definitely understand having less patience and snapping at them. It took 20 minutes to get my 15 month old dressed in her costume last night because she fights changing so much-it's like wrestling a freakin greased pig. I was out of breath and in pain and could hardly move just after getting her dressed. Then, for trick-or-treat, it was pouring rain, I was carrying my 15 month old, and my son wanted to go to more houses and I just couldn't physically do it. I snapped at him and told him that I was headed home and he could follow me or trick-or-treat by himself (he's 6 yrs. old!). I felt so guilty afterwards, but then I just realized that I'm doing the very best that I can. We got home and I literally just crashed onto the floor and laughed out loud at the ridiculousness of all of it. I'm 34 yrs. old and feel like I'm 90! The way I look at it is, motherhood is hard, really hard! Add illness to the mix and there are times when it's darn near impossible, but we are doing the best we can. All our kids really want is to know that we love them. If we're meeting their basic physical needs and showing how much we love them, that's what counts! I don't know you, but my guess would be that your kids would NOT be better out w/o you.

And when it comes down to it, our kids are what keeps me going and wanting to fight this!

How long have you know that you have Lyme and been in treatment?

Trav- you have such great wisdom and advice. THANK YOU! I really needed that reminder that healing will come. The hopelessness can set in after a while and it's hard to even imagine feeling better, so thank you for that!
Posted 11/1/2012 7:48 PM (GMT 0)
You're welcome, Mystery illness. I get a lot of encouragement from the members here too!! That hopelessness is something that I'm very familiar with still. One day it will leave me as well though!!
Posted 11/1/2012 11:58 PM (GMT 0)
I totally relate, I'm hopeless, just got home from doc appointment and he pretty much told me that my remaining pain was my "fibro" i've had for all these years. Back in 07 I had a wb and the only reactive band was 58 but I have since learned that this would have been grounds to treat for lyme but wasn't by the same doc I'm seeing now, an llmd is the same one that tested me back then. I have been treating aggressively for the past year and now sicker than ever. He also said that lyme is joint pain and would not be causing my musculosckeletal pain, so I guess saying that when I had the rash and acute severe symptoms last year and cdc pos test is when the pain started, but even if that were true, I have never gotten rid of the newer symptoms I've had for the past year.



So now I'm more confused than ever. I thought I had determined it had been lyme all along, but who knows? He pretty much does not know what to do for me. My whole body is stiff and sore, and all the larger muscles of my body are so sore they feel like I've had injections in them. My spine is stiff and sore.

I've had no quality of life for ten years now, I learned I have NO friends. Everyone said, "whatever I can do for you, let me know." as I don't even want to get out of bed most days, and I'm supposed to ask people to please bring me some food, pick up prescriptions, Just do it!!!!", I'm bedridden, why would I even have to ask? Drop me off a meal, bring me some magazines, call me!!!! I have one person that helps me out , that's all. And now I sit here waiting to go septic from my picc line because the dressing has not been changed in over a month!!!

I was a nurse, thought I had "friends" that were nurses and I can't get one of them to change my dressing. One person I asked said she would see what she could do , that was over a month ago I never heard from her again.

It's no wonder people commit suicide w/this disease, good for them for having the guts and getting themselves out of this much pain and suffering, I wish I could do it. It's too bad I can't find a quack doc to help w/assisted suicide, there sure are enough of them out there, including the ones that misdiagnosed me and ruined my life to begin with.

And yes I don't want to hear about god anymore. Why would god not want us to be able to walk outside and enjoy nature without worrying about nature attacking us? This is what he intended? A local guy by me dropped dead from west nile a few months ago.

Even if people do recover, especially us that have been sick for so many years, I probably still won't leave my house. Is that any way to live?

Post Edited (seniubr11) : 11/1/2012 6:01:52 PM (GMT-6)

Posted 11/2/2012 12:17 AM (GMT 0)
senlubr-The statement that your Dr. made about Lyme not causing muscoskeletal pain is completely inaccurate! Most of my pain is muscoskeletal. I have joint stiffness and cracking, but my joints aren't what causes the most pain. I'm not sure if I interpreted your message correctly. Is that dr. a LLMD????
I would think that any LLMD would know that Lyme and it's co-infections cause muscular pain.

Have you been tested for co-infections? I'm new to this, but from what I've read, when Lyme gets worse or lingers after treating aggressively, there is often a co-infection involved that needs treated.

I'm sorry that you are in so much pain emotionally and physically. I do think that people on here like Traveler can help provide some hope. It does get better, but it can be a long, slow, grueling process.

Is there any way that you can get to a different LLMD to see if another treatment plan would help? Are you on abx. or doing more of an herbal treatment? Are you on supplements also? With Lyme, it seems like what works for each person is very individualized.
Posted 11/2/2012 2:29 PM (GMT 0)
Seniubr,
Mysteryillness is right, are you sure that you are seeing a LLMD? A good one?? There are good LLMD's and bad LLMD's. A "LLMD" who doesn't even recognize symptoms of an on going Lyme infection isn't a very useful!! You need to get to a practitioner that actually understands these infections and run - don't walk - away from that one that is telling you all of those things!

Not only that, for some of us, abx just isn't the answer, so don't ever give up!!

I was only on abx for 12 months because I kept getting more and more ill. I finally got really scared and took myself off of them. It took me a while to get onto a natural protocol, but once I did, I started seeing improvements in only 2 months - that's after only getting worse each month I was on abx!!

I know you don't really want to hear this, but don't loose hope either - I was bed ridden and house bound and after several months of following my treatment protocols, I was able to be back outside doing at least a few things - now, after being in treatment for less that a full year, I have enjoyed quite a bit of life outside the house!!

Of course there's no way to tell how much damage each of us will end up with from these long-term infections, but there's no reason to believe that you won't ever be able to function again....once you find a good practitioner and the right protocol your body requires for healing!

The other thing that Mysteryillness pointed out - do you have co-infections? According to Dr. James Schaller (www.personalconsult.com/) those co-infections

can not only stop you from healing from Lyme, but can be deadly -especially Bartonella and Babesia. Have you done any reading on his site? He has a lot of information that he pretty much always backs up with references and links.

I would love to talk more with you - but I have to get ready to leave for my doc's appt - and I'm usually gone most, if not all day.

Everyone who is posting here - healing can be had!! You will have to do some leg work in order to find the treatment protocols that your body needs in order to heal and sometimes it doesn't include abx. for those who have been ill for a very long time. The body has

been beaten up pretty bad by the time we've been ill for very long with these infections. We need to support bodily functions, balance out the body's hormones and get the gut moving well again- among other things - not just go after the infections. Of course if a

person is 'well supported' in those respects and abx are being added in, then a lot of those issues can be avoided.....as long as the abx are tolerated.

The big thing here - don't give up!!! I really truly almost did and I would have missed out on being here to bug the heck out of you all (smilewinkgrin), I would have missed out on having Grandchildren, and I wouldn't have lived the life I now have.

Hang in there everyone!!


Oh- PS - Mysteryillness - blush Thank you for such kind words about me!! It really does mean a lot to me to know that I have a positive impact on at least some here! Otherwise I'm just a pain in the rear for everyone!!! turn: LOL!!
Posted 11/8/2016 9:53 AM (GMT 0)
Traveler, I don't mean this meanly...

But healing can only be had with money. With support.

I have a home. I have treatment. I am looking forward and feel healing can be had.

But I recognize that not everyone has my situation... I would be homeless and without treatment without help. My life would be a nightmare.

I personally feel at some point they should not make people suffer with these infections with no treatment or dignity, as getting and holding a job for many is impossible.

Prayers things change
Posted 11/8/2016 12:51 PM (GMT 0)
You mentioned the diet.....3 days in a row....?

Your diet is so important,especially now.

Keep moving foward and asking questions....we all get those days and they do suck.

Answers will come if you leave no stone unturned.

r
Posted 11/8/2016 7:40 PM (GMT 0)
Hi Spaceinthesky,
This is a really old thread - it's 4 years old now.

While I agree with you on needing money to heal, most people that have a place to live and food to eat, have a way of getting some money for treatment - maybe not enough to see a LLMD, but enough to buy herbs and at least not suffer as much.

I do totally agree with you that it is VERY wrong for Lyme patients to be left homeless and without help simply because of all of the controversies with these infections, but that is still where we are. There are a ton of people that have lost it all and have taken their lives because they could not see a way out. I was nearly one of those people twice in my life, but fortunately I managed to survive and live to fight again and again for treatments that would help me.

Everything in this life takes money, and when you can't work, that makes life pretty miserable. I haven't been able to hold a job for over 25 years, and even back then, it was only part time - so I get it. Having two young kids at my side wasn't helping things either - unless I was willing to give them up for adoption, which I wasn't.

This country does not know how to help those with chronic illnesses, unless that person has one of the "acceptable" chronic conditions, like cancer or a few other things. Everyone else has to fight for the basics in life, and I agree, that is so very wrong.
Posted 11/8/2016 7:57 PM (GMT 0)

spaceinthesky said...
Traveler, I don't mean this meanly...

But healing can only be had with money. With support.

I have a home. I have treatment. I am looking forward and feel healing can be had.

But I recognize that not everyone has my situation... I would be homeless and without treatment without help. My life would be a nightmare.

I personally feel at some point they should not make people suffer with these infections with no treatment or dignity, as getting and holding a job for many is impossible.

Prayers things change

Traveler is right.


It has also been said on this forum that our bodies are made to heal themselves, and that we need to allow it to, by feeding it in the healthiest way to the best of our financial capabilities. If we don't, we create other health issues that hinder our healing such as yeast overgrowth, too many stimulants and sugar which the bacteria love.

I learned the hard way that with these bacterias being active inside of me I can no longer eat the way I used to.

I've learned on here that our adrenal glands keep our entire physical and mental state running smoothly. If we over work it's function load and combine it with any excess stress, it can wear out to the point we want to just drop in our tracks.

We all have to relearn that if we want to get better and stay better, we have to at least cooperate with feeding our bodies with what it really needs, and often with further adjustments for specific issues.

It's tough and takes determination and work,(but really not all that much more money, but worth striving for.
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