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Posted 7/13/2014 7:48 PM (GMT 0)
Not to bring anybody down. Today I went to see a priest. I have unrelenting searing pain and dropping weight. I can no longer function like a human being. The pain is unbearable. I know its no longer just lyme disease. It just isn't. I haven't gotten this confirmed by a doctor but I think I have a version of like mad cow or a version of it like chronic wasting disease (not theoritcally found in humans). I know this theory sounds crazy and dramatic but I cant find any other explantion. Its not something that doctors would look for but they symptoms are all there. Both diseases are progressively fatal. There is no cure and not treatment. But I believe the myelin sheath in my nerves has eroded away causing the unbearable pain. Im not sure if this cause it but I ordered tea from china and after I drank it all these pain symptoms came on so rapidly severe. Maybe the tea was super contaminated with junk. Or maybe I had this disease and it was part of the natural progression. Im at a loss.

Im not sure if I have any hope but please everybody pray for me. Im going to try to see if I can get anyone to take me seriously and get a stem cell transplant. Otherwise Im not going to be posting any longer. I need to try to save my life.
Posted 7/13/2014 7:55 PM (GMT 0)
Definitely go and get checked out by a doctor because that sounds rather serious. If its any consolation, I had a similar situation happen that persisted in varying severities (but always bad) for about three months before slowly calming down. Turns out, after my doctors being incredibly unhelpful, it was a mix of the Lyme and allergies. My histamines attacked the hell out of my body and it felt like I was very near death, I lost 20-30 pounds within less than two months, I was unable to move from laying down, I would only be able to sleep a couple hours before waking from shooting pains. Maybe that's something like what you are going through? Definitely see your doctor and get it sorted out, though. I just wanted to share my experience because I'm still alive and kicking and its been almost five years since that happened to me!
Posted 7/13/2014 8:09 PM (GMT 0)
Hi there,

I'm so sorry that you're feeling so desperate sad

I have been where you are now.

I lost so much weight and I was skinny to start with,I had large dents in my legs and arms where my muscles had once been,it was terrifying.

The pain was so overwelming that I often hoped that I would fall asleep and never wake up.

Two years later my muscle mass is nearly normal and I'm back to my former weight of 98 lbs.

I still have twinges when it's damp but my life is full and I'm happy.

Please don't give up,You can and will get better,I'm living proof..............keep the faith.

Tickled
Posted 7/13/2014 8:29 PM (GMT 0)
Oh Louise,
I'm so very sorry that you are feeling so poorly!

The myelin sheath is very much affected by neuro Lyme disease, this is what can cause incredible pain and misfiring nerves for us.

The weight loss can be from a number of things:
Lyme disease
Over active thyroid (Graves disease)
Adrenal stress (causes weight gain for some, weight loss for others).

At one point in time I was 37 lbs underweight due to Lyme and it's issues! The sides of my mouth split open too - boy that was painful!

Another time I also lost a lot of muscle (I'm quite muscular for being a female) due to Lyme and it's affects, which was quite scary, although I have regained most of my muscle now.

And the brain function that I lost for a time was really hard to deal with. My husband had to tell me what needed to be done each day, I couldn't follow patterns, couldn't follow written or oral instructions, or interpret much information- so I was also absent from this forum for about 1 1/2 years back in 2007 - 2008. That had to be the scariest time of my life!!

Please take a deep breath. And then get checked out by a doctor for these other conditions that you believe you could have, but also please realize that the conditions that I listed above will also cause many of the symptoms that you are attributing to other conditions.

Please do let us know what you find out too. You can also feel free to email me if you wish to.
Posted 7/13/2014 8:32 PM (GMT 0)
Louise - Please don't give up. Don't you think the weight loss is because your throat ulcers aren't allowing you to eat?
Have you tried high calorie protein drinks? May not hurt as bad to swallow?
Is your searing pain all over your body?

Don't give up...please!!

Maybe you should go to ER and get checked into the hospital - they can give you nutrition through an IV. They can't send you home in that condition.
Posted 7/13/2014 9:01 PM (GMT 0)
I'm praying for you now.

Try to keep hope.
I lost a lot of weight before I was diagnosed, I started drinking 2 whey protein shakes a day until I gained weight back. I know this doesn't always work for everyone, but if you haven't tried it, you might.

I'm with Girlie, if things don't get better please go to the ER.

Thinking of you, & praying.
Posted 7/13/2014 11:37 PM (GMT 0)
Dont give up!!! I know those words can seem empty even uncaring when you feel so sick you feel you are dying. But it comes from people who have, are enduring so much hardship. It wares us down on so many levels but you are worthfihting for. Im praying you feel some relife and find a dr who can help.
Posted 7/14/2014 12:37 AM (GMT 0)
Prayers for you Louise!!!
Posted 7/14/2014 2:02 AM (GMT 0)
Louise I feel so sad for you! I really hope you can find some solution to this horrid situation soon! Praying for you!
Posted 7/14/2014 3:31 AM (GMT 0)
I'm praying for you too Louise. Praying for your health to be brought back to you and for strength of spirit and body. Hold on!!!
Posted 7/14/2014 4:14 AM (GMT 0)
Louise, I had lost a lot of weight too ... the pain was unbearable for me ( and still is on some days, but I am getting much better )

I went thru the entire gamut of things I thought it could be - I got MRIs, CT scans, TMJ experts, oral surgeons, ENT surgeons, all kinds of physical therapists from acupuncturists, myofascial, lymph drainage, chiropractic, vein specialists ( CCSVI ultrasound ), MTHFR specialists, etc etc etc - wow, I have spent a LOT on useless doctors

For me, it is bartonella .... as much as I have thought that an infection cannot cause THIS MUCH pain - IT CAN !!!

You were healthy for most of your life - I was too ... that makes this even harder ...

But you CAN return to that healthy state - I ASSURE YOU !!!!!!

Find a doc and try ozone - and give it time !!

I had my 3rd ozone last week ... and I am supposed to start the rifampin, but I have not b/c the ozone is doing things that have not been done before - I feel that I am "returning" ( I know you will understand that )

Just hang in there and try the ozone
Posted 7/14/2014 8:43 AM (GMT 0)
Hi Louise,

How are you doing today?

Please let us know how you are,I think that I can speak for the others,we are very worried about you.

Tickled (((((((((((( HUGS)))))))))))))))))))
Posted 7/14/2014 10:03 AM (GMT 0)
Dear Louise, prayers for sure. Short term: try Ultimate Zapper! I just started. Been sick forever. Also, apparently they are treating Lyme successfully with stem cells in India. I hear someone is taking stem cells from our fat cells & it's working well!
I'm stopping IV Clindamycin, by my own choice. Been on antibiotics for over yr. No more!!

Prayers again! :-)
Posted 7/14/2014 11:49 AM (GMT 0)
Dear Louise,

I'm also praying for you! I hope you post soon and let us know how you are doing.

I was also at the point when I was so very sick where I thought it was all over but here I am today, healed for several years which I thought would never ever be possible.

Please don't give up hope okay?

Sending you hugs,
Denise
Posted 7/14/2014 2:48 PM (GMT 0)
Hi Louise, how are you doing today? Is it any better?

Did you talk to your doctor about painmedication? A person can handle a lot, but there comes a point when it's getting too heavy to handle.
I have been there... I tried all sorts of painmedication, also the heavy ones, but no luck.
My dr prescribed me Low Dose Naltrexone, and the pain has decreased. It's a real relief. It does not work for everyone, and some people need to stay on it for a while before they notice a difference. But it helped me.

Don't loose hope please...

Sending you good vibes from over the Atlantic,

MarieLS
Posted 7/14/2014 7:04 PM (GMT 0)
Yes, Louise - there are many of us that are very concerned for you! And many of us can completely relate to what you are going through!

If you feel that a forum is a little too impersonal right now for you, email someone you feel connected to on here or even me!! I've been a part of many support systems for members here and other places.

It takes all of us to get through this sometimes because it can get really hard for some of us, but that's why these forums are so good! We can connect with people we might not have otherwise.

Please reach out to someone and go to the doctor or ER if this continues. We are all quite concerned for you.
Posted 7/14/2014 8:07 PM (GMT 0)
Louise, I just read your post and feel awful. You are in so many people's thoughts and prayers! I hope you get the answers you so deserve - we are all rooting for you Louise. Cyber hugs coming your way...
Posted 7/14/2014 8:30 PM (GMT 0)
Traveler is right, sometimes more personal contact works better. I was lucky to have the support of some people, and it pulled me through.

Please if you feel you want to contact anyone, don't hold back. We're here to help each other.

Marie
Posted 7/15/2014 12:08 AM (GMT 0)
Louise74,
Know that I am praying for you but please don't give up hope!
Posted 7/15/2014 1:39 AM (GMT 0)
Thanks everyone!! Hanging on by a thread, but not giving up yet. I do have pain everywhere, like a burning sunburn feeling. But geez, the throat pain is mind numbing and does not quit. It seems to come from the bony area, outside the throat, swallowing is impossible, like being cut with shards of glass. Like docs make me irate when they say they can't help, they don't try when tests look good. Maybe a nerve has lost some of its sheath. I'm meeting with my doc on Wed to talk about pain options.

I'm freaking out that it's some God awful fatal disease, but if this is lyme. Holy wow, I didn't start off this bad.

Thanks for the prayers, it means alot!!!
Posted 7/15/2014 1:46 AM (GMT 0)
did you get my message??
Posted 7/15/2014 2:36 AM (GMT 0)
Thanks for checking in Louise. We're all worried about you!

Hopefully on Wednesday you will have an answer.

Sending healing thoughts to you.
Posted 7/15/2014 8:25 PM (GMT 0)
Yes, thank you so much for checking in here on the forum and for sending me an email!! You will be okay - you are under an enormous amount of stress right now, so your symptoms are flaring badly. Hang on tight and detox as much as you can. You'll make it through this too - we are here to help!

Write to me any time you feel the need. I'll be there!
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