Lyme Disease is NOT for sissies

[boswife]

oh boy wtr,+1   You have really had some pains your way.  Im so sorry and when i just started reading this, i got so worried that it was going to be effecting YOUR kidneys..  What a horrable slap that would be.  And, on the other hand, i do know the horrors of headachs!!!!!!!!!  Im good now for years actually, but i had menningites and that started with major headach, and then siness crap o la...  which may not even touch the pain your having.  Im so glad your getting help, and YES, homeD was good for something 
Hope all else is going well for you so you can comfortably take care of yourself.  Best wishes,,, and    <---( cant help it,,, thats what i do    )

[willowtreewren]

Thanks for the kind wishes... 

I kind of slog through each day.

Aleta

[jbeany]

 

[cassandra]

I really hope that this will work for you Aleta,

lots of luck, and love Cas

[natnnnat]

Gah, what's all this???  Aleta, I hate to hear about all this nonsense you've been going through with ticks, headaches and so on. 
Hoping with big hopes that the IV works. 
 

[willowtreewren]

I started my treatment today. I felt like I better not be a wimp over that "tiny" needle being inserted.

 

They will come back out to supervise the treatment tomorrow, then Monday and Tuesday I'll be on my own. On Wednesday they will have to change the needle. That gets done every four days throughout the treatment.

I EVEN get heparin!

I feel really confident that this will finally kill the infection. The best part is knowing that I have a doctor in my corner. I have also started using SuperBetter.

I heard about it through a TED talk and it has really given me (or helped me find) strength.

superbetter.com

I think that SuperBetter might be a good resource for dialysis folks! Maybe I should start a new thread! 

Aleta

[jeannea]

I went to the link. Now I want to try it! I thought you were probably talking about a vitamin but this looks great!

[willowtreewren]

Here is my next update!

First of all, the IV Rocephin has really kicked my 

I had hoped it would be kicking the Lyme disease. 

I do take it as a good sign. After one week of treatment I'm seeing very limited (and I DO mean VERY) improvement. I'm still experiencing the constant headaches. The improvement is that I can tolerate them with only Naproxen now instead of Naproxen AND Tylenol.

I called my neurlogist this morning about extending the treatment. Lyme disease is kind of like dialysis. Those not in the community have no idea what the challenges are, with the biggest one finding a physician who will actually TREAT it. I have been very fortunate.

So this morning by phone, my doctor agreed to all of these things:

1. allowing me to get a PICC line so this silly IV access doesn't need to be changed every few days.
2. Extending my treatment so we don't just kill off the weak spirochetes allowing the strong ones to proliferate.
3. Sending my blood work to a lab in California that specializes in tick-borne diseases.

It is very rare to get physician cooperation with #2 of those items. As I said somewhere, maybe here, I am fortunate that the buggers went after my brain. Infectious disease docs will usually not consider these steps, let alone the IV Rocephin!

In the mean time, I'm missing lots of work because I'm too weak to go! I am missing the last of the swim season here, because I have this port in my arm. But the most important thing is that I get this treated before I have permanent brain damage. Talking is such a challenge. Phone conversations are the worst!

But I WILL get better, especially with all the support I have been getting from friends and family!

Aleta

[jeannea]

Glad to hear you have such a great doctor! A PICC line will be easier. I had assumed that was what you were going to get. I hope this really helps you.

[willowtreewren]

Jeannea,

I have really gotten lots of help staying positive by utilizing the SuperBetter "game." I hope you enjoy it. 

Aleta

[natnnnat]

 

[MooseMom]

Jeannea,

I have really gotten lots of help staying positive by utilizing the SuperBetter "game." I hope you enjoy it. 

Aleta

I've enjoyed SuperBetter, and I hope you find it helpful.

I am so sorry that you have been having such a rough time of it.  It must all be quite frightening.  I can't imagine what life would be like with a constant headache.  That must be awful.  I hope you get better really soon.   Please give us as many updates as you can manage.

[willowtreewren]

I've enjoyed SuperBetter, and I hope you find it helpful.

I am so sorry that you have been having such a rough time of it.  It must all be quite frightening.  I can't imagine what life would be like with a constant headache.  That must be awful.  I hope you get better really soon.   Please give us as many updates as you can manage.

MooseMom, I don't think I would be doing as well as I am without SuperBetter. Despite being weak and unable to talk well, I continue to FEEL like a fighter because of SuperBetter. I'm glad you enjoy SuperBetter, too.

I'm sleeping quite a bit lately, but I imagine that is what my body needs to fight this infection. I'm looking forward to the time that I can go a whole day without a headache. 

I'm also looking forward to being able to work for a whole day. I have only been able to do a couple hours here and there.

I get my PICC line on Monday. That will make life a little simpler. I won't have to have the IV changed out every couple days. 

Onward..... I'm fighting. And hopefully winning. I realized last night that my headache was perhaps not as bad as it has been. I'll take that as a step forward.

Aleta

[cassandra]

I'm very happy for you that the treatment is helping a bit. I hope the extention of the treatment will really knock it down. And after all these positive mails about that SB site, I'll check that out too.

Hang in there girl, lots of love Cas

[jbeany]

Yes, please, start a post about SuperBetter.  I'm curious what it's all about, but I hate signing up for things without knowing about them in detail.

[willowtreewren]

That's funny. I thought I HAD started a thread about SuperBetter, but now I can't find it.

I guess I (super) better do that now!

Here is the link to that thread (which I renamed to make it easier to find!).

http://ihatedialysis.com/forum/index.php?topic=27317.msg436911#msg436911

Aleta

[AnnieB]

Glad to see that you are taking care of yourself - Lyme disease is pretty nasty. I'll be sending healing thoughts in your direction. 

Anne

[willowtreewren]

A brief up-date:

I have an appointment with my neurologist tomorrow to go over the labs that were done by IgeneX in California. Since insurance won't cover sending labs out of state, that set me back $1300. Wheeeee.

But in the mean time, Carl rushed me to ER yesterday with chest pains. All manor of tests and an overnight stay at the local spa, er...hospital did not turn up any heart disease. Before discharging me today he kind doctor shrugged his shoulders and said the chest pain was probably Lyme related and I shoud follow up with my PCP or cardiologist.

A spinal tap is scheduled for September 27 (the earliest they could do it!).

So, that's the news from Lake Woe-be-gone.

Aleta

[natnnnat]

Yuk!  Why are you having a spinal tap?  Is that cardio related? [confused face] [oh, like this one:] 

[jeannea]

Spinal tap? Oh you poor thing. Just the thought is bad. I'm glad you didn't have a heart problem.

[cassandra]

Oh no, spinal tap, I'm so sorry for you Aleta, lots of hugs, and love Cas

[willowtreewren]

Ah, I realized that I hadn't really given an accurate update!

I was on Rocephin for 2 weeks and have been off for 2 weeks. Everything has gone downhill in the past two weeks as the disease has come back with a vengeance.

The spinal tap is to check for spirochetal DNA in the spinal fluid. They do not show up in blood too easily as the spiral configuration of the bacterium draws them into denser body parts. That is why they "attack" the organs and large joints. My knees at this point are causing me lots of problems. I sure wish I could get my doctors to work as a team!!!!

Seeing the neurologist (headaches and brain fog) later this morning.

Aleta

[cassandra]

lots of luck Aleta, I'll be thinking of you

love Cas

[jbeany]

 

[MaryJoe]

  Hi Aleta!  I was just dropping in to see how you are doing.  I'm so sorry the Rocephin does not seem to have really done any thing but keep the Lyme at bay, and that only while you were on it.  I'm hoping your neurologist will have more helpful ideas about improving the headaches and brain fog.  I don't know how you manage to stay so strong and positive through all the pain and complications Lyme keeps throwing at you. I hope the spinal went well (as well as having a tap can go!) and I'm sorry to hear that your knees are now under attack by the spirochetes. At least they ruled out heart disease.  Sheesh, one step forward...well, you know.

Positive thoughts