It's been a while...

Had a hunch and had my son tested through Igenex.
He has lyme disease as well. It was passed to him congenitally.
The state of my health has declined rapidly and felt that I needed a different treatment approach.
My son and I both went to see a LLMD in Washington DC.
They told me he does not require any treatment at this time as his lyme is not active.
I on the other hand require IV antibiotics for 7-9 months followed by oral for some months til my main symptoms are gone.
My amazing mother in law will be my travel companion once a month.
She has also been my guardian angel through all of this and I would be lost without her.
How did I get so lucky?
Sigh.
Going to try and link my instagram and twitter to this site before we leave to try and document this journey as I don't think I will be wanting to type much.
As I haven't been able to lately.
<3 p="">Hoping this is the answer for me.

Is THIS the bottom?

I highly doubt it.
But I feel pretty fucking low right about now.
I wish I could control this sadness.
This anger.
I feel like I have no one to talk to who can understand what this is like.
This isn't the typical disease.
There is no known "cure."
There is no standard treatment or protocol.
No one knows what will work and what won't.
And we are all searching day after day for something.
Better testing methods, new procedures or medicines.
Hell, even recognition that chronic late stage lyme actually exists!


Don't get me wrong, I am grateful for all that I have.
I am privileged to have an LLMD.
For the means to afford (most) my medicine.
For the supportive family.
For my son.


But I'm mad as hell.
And I'm so down.
And the stress keeps piling on.
This is going to be a long road.
And even still, I won't ever be back to my 100%.
And what hurts me the most is that my son might have to go through this, too.


SIGH...


My husband worked for a guy who is in remission after only 10 months of treatment.
Granted he had i.v. antibiotics etc. from the top Lyme Doc.
Looking forward to talking with him.


The trip to the LLMD went ok this time. I added about 8 new things, and one for my son.
Something to help his mood, specifically rage.
Which has been through the roof the past two days.
We made an appointment for the both of us this time.
I'm looking forward to hearing what she has to say about him.
And hopefully get to spend some time with my Dad and Stepmom.


I have no choice but to soldier on.
I have my moments when I'm caught up in the emotions.
It's just such an isolating illness.

Sauna!

Finally ordered my portable sauna last night!
I'm super excited about it.








http://www.ebay.com/itm/XLarge-Infrared-IR-FAR-Portable-Indoor-SPA-Sauna-1-Y-WR-/160462715372?pt=LH_DefaultDomain_0&hash=item255c52b9ec

Procrastination

I finally labeled all of my meds!
And I got a handy dandy little note pad to write down when I add a new one.
It felt good to get organized and I feel motivated.


Now, to prepare for a yard sale next Saturday.
I am going slow and working one room at a time.
I would never be able to do all this without pain management.
I am so thankful.


I caught a cold from somewhere.
My son has it too.
I feel run down and more achy than usual.


My husband, myself, my son, stepdaughter, her friend and my mother in law went to the park today.
It was purty hot out and my son wasn't feeling 100% yet, so it was short lived.
But glad to get out in the fresh air and sunshine.
Now he has gone to his NaNa's to spend the night.
I hate it when he is gone.
He has only stayed away from me like 5 times.
One of those times was for three days when I was admitted for severe migraines.


The morning can't come soon enough.

Appontment #2

So, my second appointment in Jacksonville went rather well. She agreed that antibiotic treatment is way too harsh on me. So we tweaked a few things and I am happy. Since my son is tolerating the herbals, that's the route I will go as well. Also, instead of taking all these new things at once I will take one for a few days then add another if I am tolerating that one fine.


My son is still sick with this tummy bug going around. Took him back to the doctor for the third time today to make sure he wasn't dehydrated. He did not need an IV thank goodness. Found out he is also getting 4 of his two year old molars in at the same time, so that is adding to the diarrhea. Doc said another week of it and he should be in the clear. He has still been throwing up in the early hours of the a.m. Gunna try giving him his Zofran before bed to see if that helps.

Update on Protocol

So, my insurance came through on my scripts. Thank goodness :) They ended up being $20 each, so $120 for them all. Much better than without insurance. Phew.
So I did one day of the protocol and was sick sick sick! I couldn't possibly manage to work AND treat so I held off and put in my two weeks notice. I have been done with work for a few days and am about to start the protocol again. I already feel so weak, fatigued, my joints are hurting so bad, migraines are out of control.
My mom got me a wheelchair. I needed one so bad. I cant stand for very long without feeling like I'm going to pass out. I have to have someone take me to the grocery store and use the wheelchair. I feel like I can't drive right now. I wouldn't want to put mine, my son's or anyone else's life on the line. So, I guess that means I need to start this protocol ASAP.
I've also been very angry and sad. Its hard to just sit on the sidelines and not be able to help as much as I used to with my son. And I see my husband get frustrated with my son and how terrible the house looks, so I try and get up and help and just end up on the floor or really overdoing it and hurting bad.
My eyesight has been blurry with floaters lately. The list of symptoms is endless. I can't wait until I have a good day again so I can get my son and myself out of this house. It is so hard just to care for him when I feel like death...doing this protocol (which takes a lot of effort in itself) is going to be really really hard. I don't know how I'm going to pull it off.... I really don't.

From Hopeful to Hopeless

Well, since last post I went back to my primary care doc and he said there was nothing else he could do for me. He wants me to go up to Emory and see a rheumatologist. I also sent off some blood to get tested through Igenex the same day. It hasn't come back yet, but I am eagerly awaiting those results.


I also went down to Jacksonville to see a new LLMD. She was amazing. She not only gave me a protocol, but one for my son as well. I left that office so happy and hopeful. I was bummed that she confirmed it must be not only Lyme, but Bartonella and Babesia. But the extensive course of antibiotics, antimalarial, vitamins, supplements etc. was very impressive and I couldn't wait to start.


I ordered all the vitamins and supplements and those were about $150 for a months supply.
Then today I dropped off my scripts at the pharmacy and was really hopeful this new insurance would pay for most of it. Nope. The coupons that I print out at goodrx.com were way cheaper than insurance!!!! I don't know if they just didn't cover them or what. But those are $380 and are still at the pharmacy for that reason. I also need to still get my two nose sprays from that compounding pharmacy in Atlanta. Those are $270 I believe.


At this point doing the Cowden like I wanted to would be wayyyyy cheaper. $230 a month compared to the $800 for the next two months and after the nose sprays it would drop down to $530 a month.


Holy shit. There is no way.


Back to where I started.


Hopeless.