Another month and a half of waiting and my test results are all in!! To start with there was a total of 20 tests run. To sum them all up I have a current Lyme infection and my immune system is shot because of it. I should be starting my treatments very soon and I cannot wait. I may be completely freaked out about it but I know in the end I will be better.... when ever that end may be! I was told that I will have to get worse to get better. But I will fight this!!!!
OK... I will have to explain a bit with these tests and their results... so bare with me.
To break down Lyme disease... First of all Lyme Disease is an autoimmune disease mainly because the body has a hard time attacking the bacteria, that is Lyme, and instead attacks itself in error. The actual Lyme bacteria is called Borrelia Burgdorferi (aka: B. Burgdorferi or Bb for short.) It is a bacteria that is called a spirochete. That means it has a cork screw-like body. It can drill into tissue and cells to hide and protect itself from the immune system or antibiotics. There are only 3 known spirochetes and Lyme is one of them. It is transmitted in a few ways. Most commonly by a deer tick... Specifically the black legged tick. It can transmit the disease in two of its 3 forms. The tick starts as a Larva then morphs into a Nymph then to an Adult. It is in these last two stages that the tick can bite you and transmit the bacteria. The smallest one is about the size of the tip of a pencil. You could even mistake it for a freckle. This tick is tricky. It numbs the skin before digging in to feed. It will stay attached anywhere from 12 to 36 hours.
So, lucky me... I tested positive for IgG and IgM Lyme antibodies on the Western Blot. (It's the Lyme disease test.)
IgM is a sign of current infection
IgG is a sign of current infection, or of a past exposure to or past infection by the organism
So I have evidence of a past and current infection.
Sometimes these ticks can carry another bacteria or virus. These are called co-infections. Some of these can be worse or the same as Lyme as far as symptoms goes and can complicate treatment. The Co-infection tests came back negative for me. WHEW!
Other tests show 2 secondary infections that I have and my body is unable to fight off because of the low immunity levels that I have. One is a parasite and the other a nasty virus. BOTH of these will have to be treated in order to have a full recovery.
Another important test is called the CD 57. It is a test to check for a certain marker of your Natural Killer cells (NK) or as I know it to be: The killer T cells. NKT cells are essential for several aspects of immunity because their deficiency has been shown to lead to the development of autoimmune diseases (such as diabetes and atherosclerosis,) and cancers. The normal range for your body to be at is 60 - 160. I am at a 13. It is ridiculously low. Lyme is causing this and will need to be addressed in order for my body to be able to take over fighting and maintaining the Lyme after IV antibiotics are completed.
My regular Blood count came back the same as it was in February. Low count of RBC and WBC. (Red and White blood cells.)
My Spectra Cell test, (looks for vitamin deficiencies,) showed I am low in B12, D3 and Glutathione.
My Urine Metal Toxicity test came back with high levels of 4 metals. Aluminum, Mercury, Lead, and Cadmium, (which is carcinogenic... It means it causes cancer.) All of these will need to be lowered greatly if not completely, (especially Cadmium!) Lowering these levels also helps in addressing the bio-film communities that Lyme disease creates to protect itself. Its like the film in a fish tank is a microscopic community of organisms... Called a bio-film. Lyme can do the same. Antibiotics cannot get through the protective slime shields that they create. Bio-films are made up of several components including certain metals. If you remove the metals you make holes in the film that antibiotics can get through and destroy the bacteria. So this will also need to be addressed.
My thyroid checked out fine as well as a whole slew of other tests. Although a few tests showed of other past viruses and infections, the panel for these were low and suggested they were past and not the root cause. There are 5 of those with three in need of monitoring. One was Epstein-Barr, another HHB6, and another a mycoplasma type of bacteria.
SO!
What does this all mean? Well, I only know the Lyme protocol and nothing for all the others. We will be learning as we go, but there are a lot of things we need to address in the next year or two. Lyme treatments when shown past the first stage are typically 3 weeks of daily IV antibiotics through either a PICC line, Central line or Port. All send a tube directly to your heart that will get the antibiotic to the best place for treatment. Then following there will be an long in home regimen that I will have to follow and continue until things really improve.
I have an appointment this Thursday, July 24, 2014 at 9:15 am with an Infectious Disease doctor here in town to get his opinion and possibly begin IV antibiotic treatments that day. Depending on a lot of things, though.
The treatments should cost us around $15,000 in total by the time we are done. If my treatment goes over the 3 week time period, then it could be more. I will know more on this from the appointment Thursday.
Once treatments are started I may still go to Envita if we are able to afford them. I would recover quicker there but can as well here in town. It will just take a LOT longer.
I also have learned that I will need to add sugar to my already cannot eat list of gluten and dairy. HOW WILL I EAT??? Just kidding! I already eat gluten free being previously diagnosed with Celiac Disease, yes, another auto immune disease,) 15-ish years ago. So it's nothing to me. Dairy is not too bad... but SUGAR??? Fine. It's not good for me anyways. I try not to eat too many processed foods so all of this should be easily followed.
I am learning so much from this and hope to start bringing awareness to everyone on what to do if you get bit by a deer tick, the signs in the first stage, (remember if you catch Lyme in it's first stage you can COMPLETELY get rid of it.) I hope to also bring awareness that second and third stage Lyme mimics other diseases and is highly found to be the root cause of them. If I can help just one person.... The symptoms are so horrible! And to be able to get rid of 90% just be attacking the root cause. Its awesome to think of and even more amazing that it happens ALL of the time. Most of the cases of "chronic" Lymies, (that's a nick-name for a person with Lyme Disease,) when found out years later have been misdiagnosed with Lupus, Fibromyalgia, Chronic Fatigue Syndrome, Multiple Sclerosis, heart problems, and MANY more.
Any how. I promise never again to make a post this long. It was necessary!!! I love you all and hope you check out my YouTube Lyme Diary entries. I will try to keep them up through treatments. Please don't forget to go to my GoFundMe site and donate. The link is at the top of this blog. Thanks again!
Saturday, July 19, 2014
Thursday, July 10, 2014
Entry on 07/10/14 from GoFundMe - Mommy is in need of treatments
Please help our family get mommy better. Any donation helps and sharing this page does, too. We are still waiting for test results that will inform us of the proper treatment plan.
Last night we all went swimming and it was so much fun but today is a true testament of how bad things really are. As time passes the disease continues to wreck havoc and puts mom out of commission. Having even a few hours of fun with the family makes for days of recovery. Not to mention all the daily tasks of taking care of the kids and home. Just vacuuming or doing the laundry can put mommy down for at least a day. Going to church on Sundays always make for tough Mondays. It is a challenge that is making us all stronger as a family but still no way for mommy to live.
Every day there is intense pain. Some days its hard to walk. Others mom walks around in a fog, unable to function or talk correctly. Her heart is continually feeling the effects of this disease and we have now added a cardiologist to the long list of doctors on the list.
We are hoping for a miracle but we know that miracles do not come with out the instruments of God, (which is all of you!!) He is on our side and we know we can get this disease under control.
We are so very thankful for all the friendships we have. It is a testament of how truly blessed we are. We know someday we will pay it forward... It has always been mom's love language to serve others. It always brings her great joy!
Thanks again and may God bless.
Love,
the perSeverance Clan
Last night we all went swimming and it was so much fun but today is a true testament of how bad things really are. As time passes the disease continues to wreck havoc and puts mom out of commission. Having even a few hours of fun with the family makes for days of recovery. Not to mention all the daily tasks of taking care of the kids and home. Just vacuuming or doing the laundry can put mommy down for at least a day. Going to church on Sundays always make for tough Mondays. It is a challenge that is making us all stronger as a family but still no way for mommy to live.
Every day there is intense pain. Some days its hard to walk. Others mom walks around in a fog, unable to function or talk correctly. Her heart is continually feeling the effects of this disease and we have now added a cardiologist to the long list of doctors on the list.
We are hoping for a miracle but we know that miracles do not come with out the instruments of God, (which is all of you!!) He is on our side and we know we can get this disease under control.
We are so very thankful for all the friendships we have. It is a testament of how truly blessed we are. We know someday we will pay it forward... It has always been mom's love language to serve others. It always brings her great joy!
Thanks again and may God bless.
Love,
the perSeverance Clan
Our first goal of 10% met on 07/05/14!!!
We did it! Thanks to everyone we made it to our first goal! A special thanks to a certain family, (the Martz's!) who previously donated, but put us at out goal before weeks end! As I told them, "I have to say that this is the first donation to really make me cry." Don't get me wrong, I teared up completely with each one... We are just SO blessed! Here is to the next 10%!!! THANK YOU everyone, from the whole perSeverance clan!
Entry on 06/30/14 from GoFundMe - Lyme's sad news...
Its 2am. I'm all cleared to go in a few hours. Yesterday, (Sunday,) I learned something very important. I think this will be my last post for a while until I know more of what's wrong with me. I'm tired of scaring my kids, of being in need, of being weak. I learned something very sad and I need to process it for a bit. I have a follow up appt later this week and will decide, by myself, what to do then. I just need a break from all this. It sucks... Sorry for everything. Thank you for all your love. It has meant a lot.
Entry from 06/29/14 from GoFundMe - Still in the hospital
Entry on 06/28/14 from GoFundMe - Hospital visit for chest pains
I am here still in the hospital, waiting for more tests. I have had chest pains since the 13th and two days ago my back, between my shoulder blades, started to hurt tremendously. Yesterday, both were excruciating. It would fade off then come on strong. Then my shoulders and arms became numb and tingling. I couldn't take the pain anymore even with my pain meds. I called my husband home and called 911. I was taken to Centennial Hills Hospital in Las Vegas. They confirmed with my blood test and EKG that I did not have a heart attack. But my EKG did not look good. Something about a line that should be going up is going down. It suggests my Aortic Artery, the one that goes behind the heart. Or it could be something else... First they are eliminating heart issues. Lots of blood work, Echo on my heart and still waiting to do a stress test. The Doctor said I'm too young for this, even though he has seen 34 and even 26 year olds in here before with issues. So, one step at a time to figure things out. Keep the prayers coming and thanks to everyone for their support! I feel so loved!
Entry on 06/26/14 from GoFundMe - How much do I have to raise?
I am asked every day, by some one new, when I will be leaving for treatment. I always respond with:
We are waiting for results... That's another 2 weeks. Then I will have a consult scheduled and will travel to AZ for my port surgery. Then it will start the week after.
So, maybe 3-4 weeks.
I realized late last night that until I have the money... I cannot start. We were quoted the highest, worst case scenario about $57,000 over a 8 week period. I may not have to be there that long and that is if I will need "the works."
That is $7,125 per week.
I know "some" of the antibiotics are covered by insurance(s).... But we don't know how much.
I may not be going right away after all...
Next week my amazing "fundraiser volunteer" friends are going to be put to work getting something big planned. I am excited to start and hope it will accomplish what we require.
I am starting to fear that I am not trying to raise enough. I won't know until the test result consultation. Just praying for everything to truly be something we can do soon.
If I left this Monday I would be, at the latest, home a day before school started. Knowing this won't happen I fear how long into the school year I will be gone. It's hard to think that I won't be there for them.
OK, rant over... Either way, there is work to be done! I am just thankful for ALL the support coming through for our family. Like I have said before... We are truly blessed. Love to all!
We are waiting for results... That's another 2 weeks. Then I will have a consult scheduled and will travel to AZ for my port surgery. Then it will start the week after.
So, maybe 3-4 weeks.
I realized late last night that until I have the money... I cannot start. We were quoted the highest, worst case scenario about $57,000 over a 8 week period. I may not have to be there that long and that is if I will need "the works."
That is $7,125 per week.
I know "some" of the antibiotics are covered by insurance(s).... But we don't know how much.
I may not be going right away after all...
Next week my amazing "fundraiser volunteer" friends are going to be put to work getting something big planned. I am excited to start and hope it will accomplish what we require.
I am starting to fear that I am not trying to raise enough. I won't know until the test result consultation. Just praying for everything to truly be something we can do soon.
If I left this Monday I would be, at the latest, home a day before school started. Knowing this won't happen I fear how long into the school year I will be gone. It's hard to think that I won't be there for them.
OK, rant over... Either way, there is work to be done! I am just thankful for ALL the support coming through for our family. Like I have said before... We are truly blessed. Love to all!
GoFundMe account established 06/12/14 - the LYME LIFE
It's amazing how fast things can come tumbling down when you hear "You have Lyme Disease."
Some of the first comments I heard from others were, "I knew someone who died because of Lyme Disease." Can you imagine my reactions?
I have heard of it before but never quite understood how horrible this disease can be if left untreated. The symptoms mimic other diseases. So if by chance you test for Lyme, you are one of the lucky few who will get a diagnosis.
Rheumatoid Arthritis, Multiple Sclerosis, Fibromyalgia, Lupus, ALS or Lou Gehrig's Disease, Chronic Fatigue maybe even Alzheimer's and Autism... Just to pull out the more common misdiagnosis's.
I am one of the lucky few with a diagnosis. But not lucky as much as you'd think. You see, I discovered it after my 4 week-ish window of oral, no-biggie antibiotics CURE.
Testing and treatment for Chronic Lyme Disease, (and oh, don't forget about it's co-infections,) can be over time added up in the tens of thousands, (for some around half a million). Not to mention the expenses of travel, lodge, food.... And don't forget to include care of my 4 young children while I am away. A good baby sitter isn't cheap these days!
We have a wonderful family who has done so much for us and many friends near and far who have gone above and beyond to help. We are so thankful and are deeply grateful for all you have done.
As far as my care, our family has hope to go to Envita to help us in our journey to get my health back up to as close to normal as it can be. They are located in Scottsdale, AZ. Check out their site if you like. You can learn more about Lyme Disease as well as Chronic Lyme Disease and maybe even help someone who you may think is suffering with an unknown diagnosis.
http://www.envita.com/conditions-we-treat/lymedisease
Although I have a lot of support it will be difficult and the costs will add up.
Everything from our GoFundMe site will go towards labs, treatment, travel and any other expenses occurring from the care that will be needed to help our family. This is a life long battle we will have to face until they find a cure. You can go to my site and donate here:
http://www.gofundme.com/a8w6xg
I want to send a heartfelt thanks to everyone in advance. Our journey has just begun and you play a huge role in my speedy recovery... No matter how you can help it will be appreciated!
We love you and may God bless us all!
Some of the first comments I heard from others were, "I knew someone who died because of Lyme Disease." Can you imagine my reactions?
I have heard of it before but never quite understood how horrible this disease can be if left untreated. The symptoms mimic other diseases. So if by chance you test for Lyme, you are one of the lucky few who will get a diagnosis.
Rheumatoid Arthritis, Multiple Sclerosis, Fibromyalgia, Lupus, ALS or Lou Gehrig's Disease, Chronic Fatigue maybe even Alzheimer's and Autism... Just to pull out the more common misdiagnosis's.
I am one of the lucky few with a diagnosis. But not lucky as much as you'd think. You see, I discovered it after my 4 week-ish window of oral, no-biggie antibiotics CURE.
Testing and treatment for Chronic Lyme Disease, (and oh, don't forget about it's co-infections,) can be over time added up in the tens of thousands, (for some around half a million). Not to mention the expenses of travel, lodge, food.... And don't forget to include care of my 4 young children while I am away. A good baby sitter isn't cheap these days!
We have a wonderful family who has done so much for us and many friends near and far who have gone above and beyond to help. We are so thankful and are deeply grateful for all you have done.
As far as my care, our family has hope to go to Envita to help us in our journey to get my health back up to as close to normal as it can be. They are located in Scottsdale, AZ. Check out their site if you like. You can learn more about Lyme Disease as well as Chronic Lyme Disease and maybe even help someone who you may think is suffering with an unknown diagnosis.
http://www.envita.com/conditions-we-treat/lymedisease
Although I have a lot of support it will be difficult and the costs will add up.
Everything from our GoFundMe site will go towards labs, treatment, travel and any other expenses occurring from the care that will be needed to help our family. This is a life long battle we will have to face until they find a cure. You can go to my site and donate here:
http://www.gofundme.com/a8w6xg
I want to send a heartfelt thanks to everyone in advance. Our journey has just begun and you play a huge role in my speedy recovery... No matter how you can help it will be appreciated!
We love you and may God bless us all!
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