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Posted by nonna05 (Member # 33557) on :
Too jump in on this, any suggestions? direct questions?///Have appt. 1 hour .I need short ,direct ,helpers.I.have a post at end of this

if you're doing the best you can..Not everything as I'm so sick ,I'm actually laying here in a small pool of blood..

have no energy and I don't have go to the the bathroom that bad yet why move,, it hurts to much and the rest

how can thousands of people be going through this and people are not jumping in to help..

Or am I just whinning,,On top of it 2 of my doctors are retiring,,, of course the ones that help with pain and nerves most..

So here I lay..I have a protocol, most likely a great one,, I have not been able to work up to the whole thing.

Just to much to soon ..yet 6 month's ago this would not have happened ..So I wonder if something different happened.

Do you just Lay there for months and months??

If I have to go out ,I must take A PILL to over ride the fatigue, weakness, pain. dizzy, upset tummy, brain fog and then it makes me feel kinda crapy for while..

When do you get a break???????????????????????????????// DoI just egnore the herx or whatever and dump it all in...

This is 15 month's with LLMD treatment and private treatment before...

I know parasites...was given jar of treatment, felt like crap and still just getting by.

Everyone is done,,I was sick to long to keep friends around or help.

This just can't go on like this.. I can barely get on computer anymore....

WHAT can I do to help ease the misery

[ 12-12-2012, 04:55 PM: Message edited by: nonna05 ]
Posted by faithful777 (Member # 22872) on :
You have a good LLMD now, hang in there. Many have wasted time with a doctor that did not treat aggressively enough before they find a good one.

You are with someone who knows what they are doing. I hit hell before I saw the light. Try to remember that sometimes it gets a lot worse before it gets better.

Sending prayers your way.
Posted by payne (Member # 26248) on :
HELLO.. is ther anyone near nonna, or that can send HELP ?? --alka seltzer Gold has done me wonders when down for the count..sometimes just a plain cold/seltzer .. lemon water ? I am sure you are past these.. PRAYERS
Posted by norcal (Member # 29829) on :
Faithful said it right. I was at my worst nov-dec 2010,really bad did not want to go on another day.
It was the next month that things started to get so much better,still treating today but have my life back.
Nonna keep with it ,things will get better for you as well.
Posted by Tammy N. (Member # 26835) on :
I'm sorry nonna. I hope you find answers that help you along. God bless you.
Posted by beaches (Member # 38251) on :
Nonna, what do you mean you are laying in a small pool of blood???

What's going on with that?
Posted by Lymetoo (Member # 743) on :
That's what I was wondering, beaches!

nonna... Do you need to go to the ER?
Posted by nonna05 (Member # 33557) on :
thank you all

the blood was from a shot and my body just didn't like it/or was done wrong and I was/am so sick ,it didn't get cleaned up like any normal human would.

I did have a 3 plus temp for a few hours ,but this i stuff that doesn't make sense//

/Like legs swelling ,then not being able to use knee's, walk pull up.
That started on my B-day, 23rd and hasn't resolved but not as bad,

It's just one more thing that stops me

I Really don't understand how it gets so much worse on all these meds.

the triplets are coming and here I lay.

with the pretty urgent matter of what to do about the 2 doc's retiring and energy to be on here , make calls and forget getting dressed and going to find one..

just overwhelmed.

I tried several Alka-gold, constant lemon water
Posted by faithful777 (Member # 22872) on :
I am 2 hours from her and have the same LLMD. There is a treatment manual that was given to both of us that lists all the remedies for herxing. It is a great manual with all the tips and tricks in it. It is around 60 pages.

This is the beginning of treatment with an aggressive LLMD and if the protocol is too much, all one has to do is tell the LLMD and it will be addressed.

It is always worse before it gets better. I crawled into our LLMD's office almost a year ago.

Now, I am on my way to recovery but I had weeks that I thought I was going to die. This group kept me going knowing that all that I was going through was temporary. There is much support here but in the end, you must communicate with your LLMD about how bad things are.

Herxing is going to happen but if it is too much for you to handle, either ask that your protocol be changed or try to toughen up and hang on until the abx start to really knock down your load of infection. This isn't going to be a cake walk with instant results. We all wish it could be like that.

If you need to stay in bed, do it. Watch TV or read a book, do whatever might give you a little relaxation.

I understand about family visiting, but you can do only what you are able to do. If you have to sit on the couch to visit, let your husband wait on the company and you rest. This is a time to do only what you feel your body can do.
Posted by nonna05 (Member # 33557) on :
thankn you ,trying and have call in.....

It's just how can it get so much worse on good treatment???????////

I can't read without getting sick.......92 pages

I've tried looking when can ..

doing it/suggestion when can ,etc.....

I get overwhelmed trying ,and there's such little change if at all it get's worse.

Does this always happen??/

13-15 month's something????
Posted by TF (Member # 14183) on :
Nonna, glad to hear you have a call in to your doctor.

Please know that I am very concerned for you and I am praying for you.

It DOES get worse on good treatment (this is the herxing)! But, it sounds like you are too, too sick so something has to be changed.

Treatment has to be adjusted to what the patient can bear.
Posted by dbpei (Member # 33574) on :
I agree with TF. This herxing is beyond what you should have to endure. Herxing too severely is dangerous. You need to let your LLMD know how bad you are feeling.

Prayers and hugs being sent your way.
Posted by nonna05 (Member # 33557) on :
I talk in 2 hours.....any direct coherent questions?

I know the knees
the just awful feeling
trying remedies
sleep all messed up.
the pain, the pain, the pain, breast hurting.

any quick suggestions?/

a friend from Lab actually came by house and took blood for this appt. otherwise . there was no way.
that was a total God send and I know it...

anybody ,,,what questions,,,suggestions,,,to ask??

I have to roll over and rest for a bit ,,I'll check before the appt.

Thank you...

the other thing is ..I'm usually so tough..hang in there, body takes whatever...this is so different. So I had no fear before of hitting hard.................
Posted by dbpei (Member # 33574) on :
See if you have the energy to write down all of the symptoms you have mentioned to us... Here are some from your posts.

Extreme fatigue
Weakness (so severe you cannot walk at times)
No energy
No longer able to manage things like getting dressed and cleaning up spilled blood
Forgetting to get dressed
Staying in bed all day
Pain in knees
Pain in breast
Overwhelming sadness
Inability to get a good night's sleep

Maybe you can put these symptoms in order of their severity and then go through them with her. Just tell her what you have been telling us. And let her know that this is not like you!

I will be thinking of you and sending positive thoughts your way. Let us know how things turn out.
Posted by dbpei (Member # 33574) on :
nonna, how are you feeling? Did you get to talk to your LLMD?
Posted by dbpei (Member # 33574) on :
Posted by cozynana (Member # 34270) on :
Nonna, Hope you had a good talk with LLMD.

I wonder if you have other issues along with the Lyme.

I just found out I have kidneys stones alnog with everything.

Maybe the doc needs to start looking for other issues.
Posted by lostlyme (Member # 38561) on :
yes it is very important to do your best with a pain diary / medication, like a big calendar . this way its much easier for llmd to see a pattern .
Posted by nonna05 (Member # 33557) on :

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