Hello! Well, this blog post is going to contain a LOT of information. So, I am just warning ya! :) Today was a big day for us as I had an appointment with my Lyme doctor, but I also want to give you an update on my last treatment round and inform you about Lyme Disease Awareness. So, let's get started. :)
First, I will give you an update on my last treatment round. This was the first time I took Zithromycin and also two days of Flagyl. The pain and fatigue were not actually as bad as my last treatment protocol. I was a little surprised. However, we had a lot of other things that got a bit worse. I took the drugs on Tuesday, Thursday, Friday and Saturday. On Wednesday, I developed what a lot of us know as "air hunger". It is not an asthmatic reaction, but is caused by a co-infection that is called Babesia (ticks carry this infection along w/ Lyme Disease). It attacks your red blood cells and depletes oxygen from them (that was the explanation from my new doctor). So, for about 36 hours, it felt like I couldn't get enough air. By the time it let up, I was pretty exhausted. Another thing that we noticed by Sunday was a decline in my cognitive ability to complete sentences and thoughts. This is so hard for me as you know I LOVE to talk. Brian noticed a quite a change from Tuesday to Sunday. I would start sentences and have no idea how to finish them. I was talking about our puppy Toby and how he had deodorant...I know... crazy huh!! It's so scary sometimes, but I have to focus on Christ and know that He is in control. The good news is that the farther I got away from my treatment round the better it got. So, obviously it's a side effect of the treatment that we will have to get used to. As far as my sensitivities, we didn't really notice any improvement and in someways, they got a bit worse. However, the Zith is fighting the bacteria, so it's to be expected. I am going to continue on my current protocol for now until we switch up to IV.
Yep, you just read it. After talking to my doctor today, she informed me that after looking over my case and speaking with me about my last reaction to the antibiotics, that I will need about a year of IV therapy. This was VERY hard to swallow. I guess, we always knew that in the back of our mind that it was possible; however, we were hoping that we wouldn't have to resort to this. However, after multiple doctors telling me how sick I am, it's time to face it. IV therapy will be EXTREMELY expensive for us. Insurance will most likely only cover 30 days and were not sure they will even do that. As you might already know from some of my old posts, there is a current battle in America: Patients and Lyme Disease Physicians against the IDSA (Infectious Disease Society of America). The IDSA is the one who develops treatment protocols on how to treat diseases and insurance companies treat these like the bible. Unfortunately, the IDSA refuses to see the light and accept that Lyme patients remain very ill after 30 days of IV treatment. Praise the Lord that we have Lyme Disease physicians fighting to do what is right and to treat patients correctly with long-term therapy; however, it puts them on the front lines and most of them have to battle daily. So, insurance companies choose to side with the IDSA because it's cheaper. It's SO SAD. This disease affects people on so many levels. The IV treatment is SO difficult to get through, but at the same time many patients go broke paying out of pocket to get well.
May is Lyme Disease Awareness month. As a graduate project and also to help raise Lyme Awareness, I created a video about my journey with Lyme Disease and also the journey of so many of my dear friends. It is my prayer God will use this as a tool to impact others and to gain support for a suffering large community of patients. Tens of thousands suffer from the disease and are fighting for their lives physically, emotionally and financially. Please watch (just click on the title below).
Lyme Disease, A Journey
So, how can you raise awareness? Here are some ideas for you!!!
-You can spread the word about this disease. Please feel free to use my video above and send it to people using every avenue possible! Here is the actual address that you can copy and paste in an e-mail or even on facebook: http://animoto.com/play/9hJZWPFBIi51BcbPnkFD1Q
-Please be praying for all of the Lyme Disease patients. Please pray for healing and that research would be done to help find a cure and to develop better medical tests so that detection of the disease can be easier and faster! Please pray that God would do a miracle and cause the IDSA to change their guidelines so that insurance companies would cover the cost of treatment instead of patients having to pay for the cost of medical treatment ($5000-$50,000) out of pocket. Please also pray for the physicians who treat this disease correctly. They are battling every day, but they have such a heart for their patients.
-If you are on facebook, you can change your profile picture to lime green (a lot of my friends have just used photoshop to paint their picture lime green) or you can get a pre-designed profile picture from one of the Lyme Disease groups (e-mail me and I can give you instructions).
-Finally, you can tie a lime green ribbon around your tree! One of my friends has started "Paint May Lyme Green" and it has caught on and will be nationally recognized. We are praying that every city in the United States will be covered in lime green so that this disease will be ignored no longer!
So, as I close, I would ask you to also lift up a prayer for Brian and I. The news that we received today was very hard to take even though we were somewhat prepared. We have a long and tough journey ahead of us both physically and financially. I won't be starting IV therapy until my doctor feels I am ready which will be a couple of months. However, once we do, it has the potential to cost $2000 to $3000 a month. As I do my IV treatment, it will not be good for me to be by myself because of how allergic I am to things and also because the therapy is so intense and can be somewhat incapacitating. We don't know very many people down here, so this is going to be a challenge. We would just appreciate your prayers. God has always provided for our every need and we know He will continue to do so. Please pray that God would reveal himself to us in a new way. We really need it! Also, please pray that I will be able to take the much needed supplements and drugs to help prepare my body for the big race (that's what I like to call it).
Thank you for all of your support. I know I end like this on every e-mail, but it is something we treasure. We couldn't walk this journey without our Heavenly Father and all of you! Know that you are loved with Christ's abounding love!
Friday, April 30, 2010
Monday, April 19, 2010
New beginning, scary, but gotta walk forward!
Hi! I know it's been awhile, but I wanted to wait to update until I had something substantial to say! Well, in my opinion, I always have something substantial to say, but my husband would probably beg to differ sometimes. These days, by the evenings, he is having to finish my sentences more and more. Thank you Lyme! I told him it's a game and he has to play "find the right word". Not sure if he's totally into it yet, but he likes competitions so maybe if I tack on a prize to the game he will go for it!
Okay, enough of my babble, lol. Here is our update. In the last 2 1/2 weeks we have had a lot of change. First, we had to basically get rid of our kitchen. We sorted through everything and threw out anything plastic, coated ceramic (our dishes) or any coated pots and pans to try to reduce my toxin load. In the middle of it, Brian looked over and I was crying. I am such a sap. Almost all of it, we got for our wedding. Those were the good old days when life was grand, we were able to leave the house and the sickest I got was a sinus infection. I think it was hard because we have had to basically do a 180 degree life turn from our dreams, future plans and our day to day activities. I don't say all this to get pity, because that is definitely not what we want. This is the life God has called us to as of right now and we have accepted that. I just want to give you a picture of how sometimes it can be pretty emotional. So, we said goodbye to another memory and gave it all to the dump.
The fun part was I was able to get all new stuff (well, not fun for the budget, lol). I joked w/ Brian and said we should have a "Lyme Disease" shower. Ha! Glass dishes, stainless steel pots and pans and glass storage containers were some things that were purchased. We are still struggling to answer the question, "What do we freeze stuff in?" because we are not supposed to heat or freeze anything in Ziploc bags. Bummer! We have ordered some glass jars that are not supposed to have any latex in the metal lid and the sealant. Hopefully, they will work! We'll definitely let you know!
I have also spent the last few weeks trying to expand my food list. Up until this point, I wasn't constantly trying things because I was so reactive that we were afraid that if I got set off w/ my food, I would just go downhill. However, about a week ago, I started reacting to my "safe" foods and we knew it was time to branch out so we could get on a rotation diet like my new doctor requested. So, I have actually added about five new foods to my list. Yay!! Some of them I can't eat a ton of like fresh strawberries, blueberries and carrots, but thanks to NAET treatments I am actually able to eat them w/out freezing them or cooking them for the first time in about 10 to 15 years. Yay! I also added brown rice (Yummy!) and lentils (Not so yummy!). Oh, I can also eat white tortilla chips. I need to get on a rotation diet where I only eat foods once every three or four days. So, that is our goal. Hopefully, my body will allow me to get there!
Well, tomorrow (Tuesday) is when we start my new treatment protocol. I am a bit nervous as I had a lot of trouble getting treated for the Zithromycin that is one of the drugs. I had a lot of reactions when I got treated via NAET. However, in the end, I did end up passing the treatment, so I should be able to take the drug now safely. I am trying to have realistic expectations; however, I have so many friends who have multiple chemical sensitivities (MCS) and horrific allergies because of Lyme Disease and when they took this drug they noticed a big improvement. I am trying to remember to place my hope in the Lord and not the drug. It would be incredible if this was a game changer for us! I will be taking Zith Tuesday, Thursday and Saturday. On Thursday and Friday, I am supposed to take the "evil drug" Flagyl. I took this drug on my last treatment protocol, but I only took it one day. When I did, after my second dose I got so sick I could barely walk to the next room. So, we really don't know what to expect with a second day of this drug. It will be a dosey though!
I have not been able to get my saline IV infusions set up. My insurance won't pay for home health care and they said I had to have a local doctor administer it. I wish I had a friend who had a nursing degree that could give them to me! We are struggling to find someone local willing to administer it with an out of state prescription. My local doctor would not be willing to because she is not Lyme literate and would not agree w/ my protocol. So, that has been put on the back burner for now as we can't afford to pay out of pocket for the home health care and the IVs. It's so hard to know when and where to spend money. With a possible IV drug treatment protocol looming in the future that could cost us 1000's a month, we want to be wise about what we spend our money on now. Saline IV's were recommended to help me detox, but my new doctor said they weren't absolutely necessary.
So, we would ask you to please pray for a some things. Please pray that I can tolerate the new antibiotic Zithromycin and the new supplements she wants me on. Please also pray that I can get enough new foods to go on a three to four day rotation diet. Please pray for my nerves and emotional strength as we begin this new/second journey. It's so difficult to know what the right path is and as soon as you choose one, you find someone with a different opinion and ideas about the best treatment protocol to be on and the best doctor to see. Don't get me wrong, I love the advice and knowledge of all my friends, but it's so hard sorting through all the information never knowing for sure if you have made the right decision. It literally makes my head spin.
With Lyme, there are so many methods of treatment and each doctor seems to have his or her own philosophy. Also, what works for someone might not work for the another person. Then, at the same time, each doctor you see and each treatment you do, costs a lot of money. So, I guess I am always concerned that we will spend all our of our money on finding the right fit for me and then by the time we get there, we won't have any money left to do the treatment that I will desperately need. You can see why this journey is so taxing on so many levels. I have to just trust that God has led us here for now, and we need to walk forward even though the unknown is scary. I think once you read the next paragraph, you can see how God spoke to my heart in a mighty way.
It's been a difficult and emotional few weeks. It's sometimes hard to remain hopeful and strong when obstacles are around every corner. Well, this past Sunday, someone sent me a text during a church service. We sometimes watch this service on live streaming feed over the internet, but on Sunday we didn't. I think I have only talked to this person a total of two times in the last four years. So, I know it was God who laid me on his heart. I received the following message through facebook:
"Everything bows in his presence Dawn. Don't know if u were watching the live stream but EVERY sickness and disease MUST BOW!!!
Amen."
I still get goosebumps as I read it! What an incredible word picture! I can just imagine Jesus standing over my disease and making it bow in His presence. This encouraged me beyond words! I have to remember that God has already won this battle! He has the Victory! So, as I come to a close, I just want to encourage each one of you no matter what you are going through, please know that the Victory is won! We can rest in His peace knowing that each step we take is guided by Him alone. It's such a relief to know it's not my job to figure out this puzzle. I hope it's a relief to you too!
Below is a song via video that has really ministered to my heart lately. To listen to it, you will have to press pause on my music player at the bottom of the page. It's worth it! It's titled "What Faith Can Do" by Kutless. I'll make sure to update you on Sunday or Monday on how my treatment week went! Thanks for your prayers! Blessings to all of you!
Okay, enough of my babble, lol. Here is our update. In the last 2 1/2 weeks we have had a lot of change. First, we had to basically get rid of our kitchen. We sorted through everything and threw out anything plastic, coated ceramic (our dishes) or any coated pots and pans to try to reduce my toxin load. In the middle of it, Brian looked over and I was crying. I am such a sap. Almost all of it, we got for our wedding. Those were the good old days when life was grand, we were able to leave the house and the sickest I got was a sinus infection. I think it was hard because we have had to basically do a 180 degree life turn from our dreams, future plans and our day to day activities. I don't say all this to get pity, because that is definitely not what we want. This is the life God has called us to as of right now and we have accepted that. I just want to give you a picture of how sometimes it can be pretty emotional. So, we said goodbye to another memory and gave it all to the dump.
The fun part was I was able to get all new stuff (well, not fun for the budget, lol). I joked w/ Brian and said we should have a "Lyme Disease" shower. Ha! Glass dishes, stainless steel pots and pans and glass storage containers were some things that were purchased. We are still struggling to answer the question, "What do we freeze stuff in?" because we are not supposed to heat or freeze anything in Ziploc bags. Bummer! We have ordered some glass jars that are not supposed to have any latex in the metal lid and the sealant. Hopefully, they will work! We'll definitely let you know!
I have also spent the last few weeks trying to expand my food list. Up until this point, I wasn't constantly trying things because I was so reactive that we were afraid that if I got set off w/ my food, I would just go downhill. However, about a week ago, I started reacting to my "safe" foods and we knew it was time to branch out so we could get on a rotation diet like my new doctor requested. So, I have actually added about five new foods to my list. Yay!! Some of them I can't eat a ton of like fresh strawberries, blueberries and carrots, but thanks to NAET treatments I am actually able to eat them w/out freezing them or cooking them for the first time in about 10 to 15 years. Yay! I also added brown rice (Yummy!) and lentils (Not so yummy!). Oh, I can also eat white tortilla chips. I need to get on a rotation diet where I only eat foods once every three or four days. So, that is our goal. Hopefully, my body will allow me to get there!
Well, tomorrow (Tuesday) is when we start my new treatment protocol. I am a bit nervous as I had a lot of trouble getting treated for the Zithromycin that is one of the drugs. I had a lot of reactions when I got treated via NAET. However, in the end, I did end up passing the treatment, so I should be able to take the drug now safely. I am trying to have realistic expectations; however, I have so many friends who have multiple chemical sensitivities (MCS) and horrific allergies because of Lyme Disease and when they took this drug they noticed a big improvement. I am trying to remember to place my hope in the Lord and not the drug. It would be incredible if this was a game changer for us! I will be taking Zith Tuesday, Thursday and Saturday. On Thursday and Friday, I am supposed to take the "evil drug" Flagyl. I took this drug on my last treatment protocol, but I only took it one day. When I did, after my second dose I got so sick I could barely walk to the next room. So, we really don't know what to expect with a second day of this drug. It will be a dosey though!
I have not been able to get my saline IV infusions set up. My insurance won't pay for home health care and they said I had to have a local doctor administer it. I wish I had a friend who had a nursing degree that could give them to me! We are struggling to find someone local willing to administer it with an out of state prescription. My local doctor would not be willing to because she is not Lyme literate and would not agree w/ my protocol. So, that has been put on the back burner for now as we can't afford to pay out of pocket for the home health care and the IVs. It's so hard to know when and where to spend money. With a possible IV drug treatment protocol looming in the future that could cost us 1000's a month, we want to be wise about what we spend our money on now. Saline IV's were recommended to help me detox, but my new doctor said they weren't absolutely necessary.
So, we would ask you to please pray for a some things. Please pray that I can tolerate the new antibiotic Zithromycin and the new supplements she wants me on. Please also pray that I can get enough new foods to go on a three to four day rotation diet. Please pray for my nerves and emotional strength as we begin this new/second journey. It's so difficult to know what the right path is and as soon as you choose one, you find someone with a different opinion and ideas about the best treatment protocol to be on and the best doctor to see. Don't get me wrong, I love the advice and knowledge of all my friends, but it's so hard sorting through all the information never knowing for sure if you have made the right decision. It literally makes my head spin.
With Lyme, there are so many methods of treatment and each doctor seems to have his or her own philosophy. Also, what works for someone might not work for the another person. Then, at the same time, each doctor you see and each treatment you do, costs a lot of money. So, I guess I am always concerned that we will spend all our of our money on finding the right fit for me and then by the time we get there, we won't have any money left to do the treatment that I will desperately need. You can see why this journey is so taxing on so many levels. I have to just trust that God has led us here for now, and we need to walk forward even though the unknown is scary. I think once you read the next paragraph, you can see how God spoke to my heart in a mighty way.
It's been a difficult and emotional few weeks. It's sometimes hard to remain hopeful and strong when obstacles are around every corner. Well, this past Sunday, someone sent me a text during a church service. We sometimes watch this service on live streaming feed over the internet, but on Sunday we didn't. I think I have only talked to this person a total of two times in the last four years. So, I know it was God who laid me on his heart. I received the following message through facebook:
"Everything bows in his presence Dawn. Don't know if u were watching the live stream but EVERY sickness and disease MUST BOW!!!
Amen."
I still get goosebumps as I read it! What an incredible word picture! I can just imagine Jesus standing over my disease and making it bow in His presence. This encouraged me beyond words! I have to remember that God has already won this battle! He has the Victory! So, as I come to a close, I just want to encourage each one of you no matter what you are going through, please know that the Victory is won! We can rest in His peace knowing that each step we take is guided by Him alone. It's such a relief to know it's not my job to figure out this puzzle. I hope it's a relief to you too!
Below is a song via video that has really ministered to my heart lately. To listen to it, you will have to press pause on my music player at the bottom of the page. It's worth it! It's titled "What Faith Can Do" by Kutless. I'll make sure to update you on Sunday or Monday on how my treatment week went! Thanks for your prayers! Blessings to all of you!
Thursday, April 1, 2010
Change is everywhere!
Hi! This is going to be a long one, I am warning you. A lot has taken place since my last post and I want to make sure I don't forget anything. We are finally in our new house. It has been crazy and definitely NOT uneventful, but we are here. It's beautiful and I promise to post pictures soon. Currently, we are unable to walk in some of the rooms of house, lol. So, I thought I would spare you those pictures. I promise, as soon as we get things settled, I will post a TON of pictures of our new place! Let me give you a run down of our move and what has happened this week.
Starting on Thursday night, I developed severe pain on the right side of my abdomen. Yep, our mind first jumped to what your mind just probably did....appendicitis. It lessened a little over the night, so we decided to wait to go to the ER because hospitals are so difficult for me with my MCS (Multiple Chemical Sensitivities). However, by Friday morning, it was still hurting so I actually drove myself to the Urgent Care. That is a first in a long time as I usually don't go anywhere except my chiropractor because I don't feel good, I'm on a lot of medication that makes me feel kind of out of it, and also because I never know if I am going to have a bad reaction to something. I waited for about 4 hours at the Urgent Care only to be told that I would have to go to the hospital because they have no way to rule out appendicitis. I wish they would have told me that before I waited there that long!! :P So, I went home and lasted through the night as I was still doing everything I could not to go to the hospital.
Saturday, was our moving day (Nice timing huh?!!! I just can't handle when things become boring, lol.). My pain had not improved and was getting worse, but the movers were set to come at 9:00, so we had to wait until after they finished to go to the ER (Yes, I decided to cave and get it checked out). The move went by very quickly. Yay God! We were done by about noon and then were off to the ER. The ER worked with us wonderfully. They listened to us when we explained how highly allergic I was to everything and did not push us to get an IV or do anything invasive. We were so thankful!! They did a cat scan and did not find anything! Thank you so much for your prayers during that time!!! God totally answered them. With how allergically sensitive I am right now, a surgery would have been so dangerous. The ER doctor said he thinks a large ovarian cyst burst which would definitely explain my pain. We are just so thankful that it was not appendicitis. It was a scary 24 hours for us, but as always, God was SOOO faithful.
Now, for the next big news. Over the last few months, Brian and I have prayed a lot about trying to find a closer LLMD (Lyme Literate Medical Doctor). We love Dr. J and he is a brilliant man; however, he is in Washington DC and with my current condition, we have wondered how in the world I would ever make it to see him for an office appointment. He has been great, allowing us to have phone appointments, but we knew that we could not continue doing that forever, as that is something he had told us. It has been hard to think of letting him go, but during this whole process we have been praying that God would guide us to the correct physician and treatment plan. Dr. J was the first doctor to diagnose me correctly and find a reason for my crazy symptoms and sensitivities. We are so grateful for his insight. However, for sometime I have been looking at having a consultation with another LLMD who not only is an expert in Lyme Disease treatment, but also works with patients who have MCS. She is located in California, only about 7 hours aways from us. I was supposed to have a phone appointment with her on Friday, but because of my Urgent Care visit, I had to cancel. On Monday, I called to reschedule and they were able to fit me in that day. Praise the Lord!
I had my phone appointment at 3pm and it was one of the best two hours of my life. She was amazing!! She trained under one of the top Lyme doctors in the country and is up to date on all the current successful Lyme Disease treatments. However, what was the most amazing thing is she is used to working with patients like myself who have MCS. Half of our phone call we spent talking about my environment and things I needed to do to lessen my toxic load and my diet. There are going to be some major changes at our house. It's going to be definitely a financial investment. We have to get rid of all of our pans and cooking materials that are coated. We also have to get rid of plastic (cooking utensils, tupperware etc.). All of these things release toxins in our food which can contribute to making my MCS worse. We have to buy a new set of stainless steel pots and pans ($400) and lots of other things that are made out of glass (dishes, storage containers, jars etc.). This is going to be very expensive; however, it's worth it if we can get my MCS to improve. We will be trusting God that he will provide for all of our needs. He always has and we believe that He will continue to do so. She taught me a lot about how to boost my immune system with supplements that her MCS patients have been able to take. She also wants me to drastically change my diet which will be challenging since right now I can only eat about 15 foods. However, she said it's necessary in order for me to get well. Over and over again, she reinforced how this is going to be a slow process. I can only add one supplement a week and if I have problems taking them it will take even longer. She is so great! She has so much experience in working with MCS patients helping them to change their environments and diet and also how to help her patients detox. Detoxification is vitally important when you are going through Lyme Disease treatment and also if you have MCS. That is one area I haven't been able to do very well because of my limitations.
Next, we talked about my current antibiotic treatment protocol. She is going to be changing the antibiotics that I use to ones that she has had more success with in her patients with MCS. We are excited because one of the drugs is a drug that a couple of my friends are on and their MCS has improved drastically! She also wants me to eventually start Bicillin shots (1 per week). It is a powerful way to take antibiotics without having to get them through a PICC line. She said they have seen great improvements on this treatment protocol. The shots will be a ways off for me as my MCS needs to improve somewhat. She is also going to increase my treatment protocol in which I will take antibiotics for two weeks and then have one week off. I was excited to hear this because we have wanted to be a bit more aggressive.
Finally, she said she wanted me to get weekly infusions of Saline. She said I could do it once a week and they would ship the supplies to my house. I can either go somewhere to get the IV saline or if my insurance will allow me to have a home healthcare nurse come administer it, I can use that method.
So, it was an incredible appointment. This doctor was the first doctor to really focus on and help me with my MCS. We feel so blessed to be under her care. Her location is great and when she does want to see me (she said we could do most of the appointments by phone), we can go up and back the same day. Yay!!!
Well, that is our current update. We have some prayer requests. First, that God would provide for us financially. The changes we will need to make in our kitchen because of my MCS will be expensive. Second, please pray that my insurance company will pay for the new protocol. Lyme Disease patients often struggle to have their treatment covered. Thankfully, my insurance has paid up until this point, but we are not sure about the Bicillin shots or the saline infusions. Third, please be praying that I would be reaction free with the new supplements and drugs. Change, for me, is always challenging; however, we know we need to take this step to get well! Finally, please still be praying for my adjustment to our new house. There are couple of rooms that still bother me allergy-wise; however, we are working on those allergies with my NAET practitioner. Hopefully, my body will adjust soon and the house can be a safe and healthy place for me!
Well, that is all for now. I am sorry this is such a long post!! :) We have had quite a busy two weeks. Thank you again for your prayers and support! Jesus is moving right before our eyes, and it's exciting to see what He will do in the future. We are believing God for my healing and are excited to work with our new physician! We will update soon!!
Starting on Thursday night, I developed severe pain on the right side of my abdomen. Yep, our mind first jumped to what your mind just probably did....appendicitis. It lessened a little over the night, so we decided to wait to go to the ER because hospitals are so difficult for me with my MCS (Multiple Chemical Sensitivities). However, by Friday morning, it was still hurting so I actually drove myself to the Urgent Care. That is a first in a long time as I usually don't go anywhere except my chiropractor because I don't feel good, I'm on a lot of medication that makes me feel kind of out of it, and also because I never know if I am going to have a bad reaction to something. I waited for about 4 hours at the Urgent Care only to be told that I would have to go to the hospital because they have no way to rule out appendicitis. I wish they would have told me that before I waited there that long!! :P So, I went home and lasted through the night as I was still doing everything I could not to go to the hospital.
Saturday, was our moving day (Nice timing huh?!!! I just can't handle when things become boring, lol.). My pain had not improved and was getting worse, but the movers were set to come at 9:00, so we had to wait until after they finished to go to the ER (Yes, I decided to cave and get it checked out). The move went by very quickly. Yay God! We were done by about noon and then were off to the ER. The ER worked with us wonderfully. They listened to us when we explained how highly allergic I was to everything and did not push us to get an IV or do anything invasive. We were so thankful!! They did a cat scan and did not find anything! Thank you so much for your prayers during that time!!! God totally answered them. With how allergically sensitive I am right now, a surgery would have been so dangerous. The ER doctor said he thinks a large ovarian cyst burst which would definitely explain my pain. We are just so thankful that it was not appendicitis. It was a scary 24 hours for us, but as always, God was SOOO faithful.
Now, for the next big news. Over the last few months, Brian and I have prayed a lot about trying to find a closer LLMD (Lyme Literate Medical Doctor). We love Dr. J and he is a brilliant man; however, he is in Washington DC and with my current condition, we have wondered how in the world I would ever make it to see him for an office appointment. He has been great, allowing us to have phone appointments, but we knew that we could not continue doing that forever, as that is something he had told us. It has been hard to think of letting him go, but during this whole process we have been praying that God would guide us to the correct physician and treatment plan. Dr. J was the first doctor to diagnose me correctly and find a reason for my crazy symptoms and sensitivities. We are so grateful for his insight. However, for sometime I have been looking at having a consultation with another LLMD who not only is an expert in Lyme Disease treatment, but also works with patients who have MCS. She is located in California, only about 7 hours aways from us. I was supposed to have a phone appointment with her on Friday, but because of my Urgent Care visit, I had to cancel. On Monday, I called to reschedule and they were able to fit me in that day. Praise the Lord!
I had my phone appointment at 3pm and it was one of the best two hours of my life. She was amazing!! She trained under one of the top Lyme doctors in the country and is up to date on all the current successful Lyme Disease treatments. However, what was the most amazing thing is she is used to working with patients like myself who have MCS. Half of our phone call we spent talking about my environment and things I needed to do to lessen my toxic load and my diet. There are going to be some major changes at our house. It's going to be definitely a financial investment. We have to get rid of all of our pans and cooking materials that are coated. We also have to get rid of plastic (cooking utensils, tupperware etc.). All of these things release toxins in our food which can contribute to making my MCS worse. We have to buy a new set of stainless steel pots and pans ($400) and lots of other things that are made out of glass (dishes, storage containers, jars etc.). This is going to be very expensive; however, it's worth it if we can get my MCS to improve. We will be trusting God that he will provide for all of our needs. He always has and we believe that He will continue to do so. She taught me a lot about how to boost my immune system with supplements that her MCS patients have been able to take. She also wants me to drastically change my diet which will be challenging since right now I can only eat about 15 foods. However, she said it's necessary in order for me to get well. Over and over again, she reinforced how this is going to be a slow process. I can only add one supplement a week and if I have problems taking them it will take even longer. She is so great! She has so much experience in working with MCS patients helping them to change their environments and diet and also how to help her patients detox. Detoxification is vitally important when you are going through Lyme Disease treatment and also if you have MCS. That is one area I haven't been able to do very well because of my limitations.
Next, we talked about my current antibiotic treatment protocol. She is going to be changing the antibiotics that I use to ones that she has had more success with in her patients with MCS. We are excited because one of the drugs is a drug that a couple of my friends are on and their MCS has improved drastically! She also wants me to eventually start Bicillin shots (1 per week). It is a powerful way to take antibiotics without having to get them through a PICC line. She said they have seen great improvements on this treatment protocol. The shots will be a ways off for me as my MCS needs to improve somewhat. She is also going to increase my treatment protocol in which I will take antibiotics for two weeks and then have one week off. I was excited to hear this because we have wanted to be a bit more aggressive.
Finally, she said she wanted me to get weekly infusions of Saline. She said I could do it once a week and they would ship the supplies to my house. I can either go somewhere to get the IV saline or if my insurance will allow me to have a home healthcare nurse come administer it, I can use that method.
So, it was an incredible appointment. This doctor was the first doctor to really focus on and help me with my MCS. We feel so blessed to be under her care. Her location is great and when she does want to see me (she said we could do most of the appointments by phone), we can go up and back the same day. Yay!!!
Well, that is our current update. We have some prayer requests. First, that God would provide for us financially. The changes we will need to make in our kitchen because of my MCS will be expensive. Second, please pray that my insurance company will pay for the new protocol. Lyme Disease patients often struggle to have their treatment covered. Thankfully, my insurance has paid up until this point, but we are not sure about the Bicillin shots or the saline infusions. Third, please be praying that I would be reaction free with the new supplements and drugs. Change, for me, is always challenging; however, we know we need to take this step to get well! Finally, please still be praying for my adjustment to our new house. There are couple of rooms that still bother me allergy-wise; however, we are working on those allergies with my NAET practitioner. Hopefully, my body will adjust soon and the house can be a safe and healthy place for me!
Well, that is all for now. I am sorry this is such a long post!! :) We have had quite a busy two weeks. Thank you again for your prayers and support! Jesus is moving right before our eyes, and it's exciting to see what He will do in the future. We are believing God for my healing and are excited to work with our new physician! We will update soon!!
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