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.

Mold

It came as no surprise to me that my nose swab came back as positive for mold. A few weeks ago I did the mold testing in the house and all of the petri dished grew mold. I have two strains of mold living up my nostrils. Alternaria and Cladosporium. I need two different types of nose sprays to kill off these nasties. One is about $90 and the other is $180. Insane. I will not be getting those until I get insurance! They said that most likely the hubs and son have mold as well. So, today I am taking my son to get his nose swabbed. If he is positive then we are gunna have to get my husband tested as well. We have to do something about this mold situation in our home. As if I didn't have enough on my plate...


We are really having a tough time of it financially. We are going to have to take my son out of school in a few months and that means I can only work on weekends if I even am able to keep that up for much longer. All of these medical expenses and prescriptions are making things that much worse. We are going to apply for insurance this week hopefully.


I got my test kit in from IgeniX. I really REALLY want to be tested for Lyme and Co-Infections through them. That is going to cost right over $1000. I think that it is absolutely necessary. I need to sell some things in order to help with that cost. My wedding dress being at the top of that list.


Onto a more positive subject. I got to get out of the house this weekend. Friday I went with my mother in law and a bunch of other family to see my step-daughter perform the lead in the musical "once on this island." She was really good. She turned 18 on Saturday! I have now known her for HALF her life! :) I can't believe how time flies.


We also took my son to Monkey Joe's on Saturday. I surprised myself my being able to climb up the huge slide WHILE carrying my son about 3 times. It absolutely wore me out and that night and the next morning my joints hurt soooo bad. But it was worth it, as he had a BLAST! We also got popsicles! He got spiderman and I got a spongebob! He is really into spiderman these days.

Frustrated and Tired...

I am so sick of this crap. All of it.
Reading about Lyme, talking about Lyme, trying to find a good Lyme doctor, researching Lyme treatments, watching Lyme related videos...
I am not happy with how things are going.
I want to be tested for Lyme and Co's through Igenix.
I want to get aggressive treatment started already!
I am so sick of being sick.
I'm tired of complaining.
I am running out of steam.
I don't know if I should even be in charge of my own treatment.
I am so confused.
I am overwhelmed.
I want to just give up.

Brrrrr!

It is a tad bit cold out today! School is closed. A bunch of businesses are closed. It is sleeting outside. My Son and I are warm and snuggling and watching cartoons. I took him to the doctor yesterday and he tested positive for the flu. My poor baby. He started feeling a little better last night. He actually left my lap to play. His fever has been up and down. Now he just has this terrible cough with a runny nose. Hope he gets to feeling better soon.


About a week ago, out of desperation, I went to my primary care physician. I wanted to know what he thought of the "LLMD" in Atlanta and the protocol she put me on. But more so, I wanted to know if there was anything else he could do for me and this out of control pain and laundry list of symptoms. He was impressed with her thorough testing and wants copies when it all comes back. He said he sees nothing wrong with everything she has me taking but really wants me to continue the antibiotics, which she wants me off of. I am torn. He also thinks that it may not be Lyme, but a different strain called S.T.A.R.I. (Southern tick associated rash illness). From what I have read, its the same as Lyme as far as treatment. There is not a lot of information about it, harder to treat, and the joint pain and fatigue are worse, from what I was told. I told him I didn't know how much longer I could continue on like this. All he said was to let him know if I become suicidal and to come back in a month, free of charge. He really is a good man and a good doctor. I just wish he was more informed and educated on Lyme and co infections.


Speaking of Lyme and co's. I really want to be tested when I go back to Atlanta for my follow up with the llmd. I really need to confirm or rule out what is causing all of this. It would really give me peace of mind to just know. I have been taking my supplements like I am supposed to. The only thing I am having trouble with is that Opti GI drink mix. It is nasty! I got some vanilla almond milk and frozen fruits to try it in a smoothie. Hope it helps. I have felt a little relief in my guts, so I think something is working. Hopefully I can begin treating the cause soon...after we confirm or figure out what the cause actually is.


I also have become really aggravated and pissed off when I research, or read in the Lyme forums and facebook groups. I wish I could just stop and ignore the problem...

Can't kick this

I can't seem to kick this cold. My throat is absolutely killing me! I have been waiting for my Opticlens GHI to come in the mail so that I can start this detox diet thing. I need to do some recipe research and make a  list of foods I want to get at the grocery store and just start this thing already! But of course I have been feeling like crud so I've been putting it off.


Got my sleeve finished up yesterday. I couldn't stop from twitching all over the place. Thankfully he didn't ask why I twitch/jerk/have tics so I didn't have to go there. He said it was ok, and did a wonderful job. Took about three hours. That last half hour was excruciating as I had reached my pain threshold. I am very happy with it and have already gotten compliments. I got it done in my good friends shop. We used to work together at a different tattoo shop until that one closed down and he opened up his own. I am so happy to see that he is successful and happy. Working where we did together was very stressful and not a very happy time when the owner was around. But it was always so fun when it was just us two, which was how it was most the time towards the end there. I got to catch up with him and I will for sure frequent his establishment more often :) I miss that guy!


Got things to do but just want to stay in bed. Need to clean out my car. My best friend didn't receive her Christmas package so I need to find the tracking number. Need to go to the grocery store. Picking up MIL this evening. I think I will lay back down for just a bit...

Atlanta LLMD

So, yesterday me Mum and I drove to Atlanta to see this new Doc. It was absolutely FREEZING! So thankful my MIL lent us her vehicle. Made the trip much more comfortable, since my heating element is OUT in my car.
So, we get to the appointment and she comes in and starts going over my new patient packet, which covered my entire life, from birth to present. From being constantly sick from the moment of conception to now, she said all the environmental factors are like rocks and my body and health are a bucket, there is not a big enough bucket for all my rocks LOL Its her job, she said, to take those rocks out and then see what we are left with and address that. She didn't rule out Lyme, and said that further testing through IGENIX would be suggested after a while but it is VERY pricey. She said my adrenals were shot to hell, and that she suspected a thyroid problem. Gallstones and cholecystectomy at such a young age suggests my digestive system is and has been fucked for quite some time. That explains why I can no longer tolerate antibiotics. Also, she suspects candida in my gut. She also said she was shocked I was even able to conceive! And that more kids was a very strict NO until I am well in the not so immediate future. That is fine with me, as I feel like I am not able to give Finn my 100% as of late. What I need right now the most is CLEAN water, CLEAN food, and CLEAN air. No antibiotics. Also, she said she could start treating Lyme or whatever else could be the matter right now but that none of it would matter if I didn't detox my body from a lifetime of crud, mold, heavy metals etc.
So, she left to write out my treatment plan which consists of a "detox diet", supplements, mold testing from my body and the house, heavy metal testing through my hair, blood work to test for how my adrenals and thyroid were functioning and probably some other things, urine test to see how my gut is digesting and processing nutrients and oxygen therapy.
The nurse came in and gave me my supplements which consist of:

• Opticlens GHI- 2 scoops daily as a meal
• Citramins- 2 with dinner
• Adrenall- 1 in the a.m. and one in the afternoon
• Liver Protect- 1 twice daily

She also explained a little bit about my detox diet:

• NO tap water
• Drink 1/2 my weight in ounces between meals
• Proteins with every meal 10-15% daily intake. As much organic, hormone/antibiotic free. Chicken, turkey, fish, beef, bison, eggs.
• Veggies 50-70% daily intake. Raw or lightly steamed. No dried fruits. Potatoes eat sparingly and beans in small amounts.
• Healthy Fats 10-15% daily intake. Cook with coconut or olive oil. nuts/nut butters EXCEPT peanuts/peanut butter. NO trans fatty acids/hydrogenated oils!!
• Grains 10-20% daily intake. Quinoa, brown rice (long cooking), gluten-free oats, wild rice.
• Sweetener- use stevia or xylitol

    AVOID the following

• Gluten-includes wheat, rye, oats, barley, spelt and kamut.
• Dairy products-milk alternatives like rice, coconut, hemp, and almond are OK. REAL organic butter is OK in SMALL amounts or Organic Smart Balance/Organic Earth Balance is OK.
• Alcohol and Caffeine- decaf teas and coffee that has been decaffeinated using a Swiss water process are OK.

She gave me four mold plates and told me to put them around the house to see if any mold would grow on them. They are to go in the bedroom, living room, kitchen, and one is to be used for the top mattress of my bed. I have to just tap the plate onto the top mattress and then close.

My nose was swabbed to see if I am harboring any mold spores in my sinus cavities.

I was supposed to give a hair sample but since I dyed my hair last week I have to wait 5 more weeks in order to give a sample. Hair must be dye free for 6 weeks minimum.

I was given a urine kit to take the First Mornings urine, freeze, and send back. She said that will tell her how I am digesting and processing nutrients.
She gave me a prescription for oxygen therapy. 8L per minute for 2 hours a day. Have to look into how much that will be...

And lastly, I had blood taken for a multitude of tests including:basic metabolic panel, auto hhrwp & auto diffial, thyroid stimulating horm, somatomedin, thyroxine tot, triiodothyro9 T3 tot, oxalate, phosphorus inorganic, organic acid 1 quan, pyridoxal phosphate, pyruvate, vanillylmandelic acid utinr, vit nos...

She seemed very smart. She attends Lyme conferences and said she has Dr. Horowitz's new book "Why can't I get better?" She was at his conference last October and agrees with what he says especially about mold and Lyme patients intolerance to it.

I guess I am pleased with the visit. It's going to take a lot of hard work on my end. I wish there was a magic pill that would just cure me already. I want to be well. I want to stop this constant pain.

I'm still going to keep my appointment with a different LLMD in March. Very least I can see him too, and not have labs that way it would only cost me $400 tops.

I just don't know if this is the right path for me? I'm wondering why we would just let the bacteria just keep multiplying. Why not add something to kill the bacteria while I am detoxing? This plan of action just seems too laid back or something. I want action! I dunno...

I'm going to try and stay positive. Maybe I will see some changes after I get all this going.

I will start tomorrow.

Today I am going to drink my coffee, eat what I want, rest this sore body from the journey and watch a flick.

Sick...again

Not sure if it's a good sign that I am sick once again. My immune system is still active? I woke last night with a sore throat, body aches, headache, stiff neck, stuffy nose. Had to have help with my son I felt so cruddy this morning as well. Got a little bit of rest and then went and picked him up just so we could take a three hour nap. Even had to go into work for a few hours. I think it did me some good though. I'm off tomorrow though, my son turns TWO, then I work Saturday. But then I am off for SIX DAYS STRAIGHT! I really am going to enjoy that! It's probably a good thing too, since the LLMD is on Tuesday and I have no idea what kind of regimen she is going to start me on. I am still super excited about it. So ready to get his show to wellness on the road!

Going to take my sick behind to bed.
Got to bake a chocolate Birthday Cake tomorrow :)

First Posty Post

So, I have an appointment with an LLMD in Jacksonville FL for March and was planning on doing the Cowden protocol until then. But things have gotten so much worse due to my stomach not being able to handle oral antibiotics anymore so I went back to the LLMD list and found a Lady in Atlanta who will see me on Tuesday! Thank Buddha! I'm happy about it, for sure. But, wasn't really expecting on going in so soon, so there's a lot of medical records I have to get together as well as update my Timeline of infinite doctors appointments and hospital visits. Yay. Not to mention the extremely long and thorough New Patient Packet I have yet to print out.

I've been so busy with my son because he has been out of school for two weeks. And also work has been crazy busy with the holidays. It was only supposed to be a seasonal position but they told me recently they plan to keep me permanently. I'm lucky to have that income, it helps...but working has really shown me how fragile my body is and how easily I can overdo it. If we didn't need the money I would quit tomorrow...

My son is turning the big TWO on Friday :) I plan on keeping it small and simple. Going to bake his cake with him. He specifically requested chocolate cake, so that's what he shall get! Just ordered his gift today, a Step 2 Deluxe Master Art Desk. He has gotten so many art supplies that OUR desk is overflowing! I'm sure he will love having his own space.

On a side note: Must try and purchase an electric can opener. My hands really hurt!



My Son and I. Halloween 2013