Long story, very short. Noelle's spinal tap did not occur today.
I called Dr. Horowitz' office in New York and they are not currently taking new patients. I did email her information to put her on a waiting list.
Thursday, January 30, 2014
Wednesday, January 29, 2014
Rough Week
This past weekend Noelle started to have vision issues. She had blurred vision, floaters and even double vision. We elected to bypass the emergency room and go to her opthamologist on Monday. Noelle has swollen and hemoraging on her optic nerves. One eye is worse than the other, but both are affected. She saw a neurologist and had an MRI on Monday. She has a spinal tap tomorrow at 10:30. They need to figure out what is causing the pressure, then relieve it. VERY scary!!
Meanwhile we have been attending our other appointments. The school appointment went well. We liked the woman that will be the teacher she reports to. She still needs to feel well enough to complete things, but at least her progress will not start over on the 30th.
We drove to Ames on Tuesday. We loved the immunologist. The information we received was mixed. Noelle's immune deficiency is not significant enough to treat. He does want to follow her and re-test her. He was very in tune to Noelle and felt for our situation. I think we were hoping treating this deficiency would help Noelle, so it is yet another piece that is not completing the puzzle. We also had a great lunch with Jake while we were in Ames.
Today we had an appointment with a pain doctor. I did not have high expectations because of Noelle's widespread pain. This doctor was a complete ass! She was not empathetic at all. She told us that Noelle was going to have to live with pain and she would need to learn to deal with it. She suggested that she exercise more. We left before one of us punched her.
We are convinced that there is healing for Noelle. We have not come close to exploring all the options out there for healing Lyme and its co-infections. Do not attempt to rob us of our hope!! Many of these days can be dark. I cannot believe that a doctor who is supposed to give life would say such unsympathetic and potentially damaging things to a 17 year old.
Wow. Sorry. I have to vent. Back to the issues at hand. Noelle is in terrific body and head pain. Especially with the pressure in her head. The vision issues are very annoying and alarming. The spinal tap is scary.
We need direction. We have all these physical issues and no clear direction where to go for healing. I currently have three ideas. We have the second opinion scheduled in St. Paul the beginning of March. I know this doctor does some things differently than our previous LLMD. But differently enough I do not know. There is the medical center in Arizona, which has the advantage of doing many different treatments in one place. Then Dr. Horowitz, in New York State, is a Lyme doctor who has recently written an amazing book describing every issue Noelle has been dealing with. We could see him. I don't know how that would look as far as treatment and follow up. So I guess I need to be fact-finding. But I am not sure how that looks. Very hard when all the research is internet and long distance based. Their are pros and cons for everything!
Our trip to Mexico has been cancelled. Noelle cannot travel due to the unexplained pressure in her head. Scott says he would rather go snow goose hunting instead:/ Yes, he is weird.
Meanwhile we have been attending our other appointments. The school appointment went well. We liked the woman that will be the teacher she reports to. She still needs to feel well enough to complete things, but at least her progress will not start over on the 30th.
We drove to Ames on Tuesday. We loved the immunologist. The information we received was mixed. Noelle's immune deficiency is not significant enough to treat. He does want to follow her and re-test her. He was very in tune to Noelle and felt for our situation. I think we were hoping treating this deficiency would help Noelle, so it is yet another piece that is not completing the puzzle. We also had a great lunch with Jake while we were in Ames.
Today we had an appointment with a pain doctor. I did not have high expectations because of Noelle's widespread pain. This doctor was a complete ass! She was not empathetic at all. She told us that Noelle was going to have to live with pain and she would need to learn to deal with it. She suggested that she exercise more. We left before one of us punched her.
We are convinced that there is healing for Noelle. We have not come close to exploring all the options out there for healing Lyme and its co-infections. Do not attempt to rob us of our hope!! Many of these days can be dark. I cannot believe that a doctor who is supposed to give life would say such unsympathetic and potentially damaging things to a 17 year old.
Wow. Sorry. I have to vent. Back to the issues at hand. Noelle is in terrific body and head pain. Especially with the pressure in her head. The vision issues are very annoying and alarming. The spinal tap is scary.
We need direction. We have all these physical issues and no clear direction where to go for healing. I currently have three ideas. We have the second opinion scheduled in St. Paul the beginning of March. I know this doctor does some things differently than our previous LLMD. But differently enough I do not know. There is the medical center in Arizona, which has the advantage of doing many different treatments in one place. Then Dr. Horowitz, in New York State, is a Lyme doctor who has recently written an amazing book describing every issue Noelle has been dealing with. We could see him. I don't know how that would look as far as treatment and follow up. So I guess I need to be fact-finding. But I am not sure how that looks. Very hard when all the research is internet and long distance based. Their are pros and cons for everything!
Our trip to Mexico has been cancelled. Noelle cannot travel due to the unexplained pressure in her head. Scott says he would rather go snow goose hunting instead:/ Yes, he is weird.
Thursday, January 23, 2014
Disappointment
We made the drive to Missouri. Traveling went OK. No weather issues and Noelle survived her pain and anxiety. Our actual appointment was a huge disappointment. Basically we were told that the antibiotics are not working and she should stop. Which may be true. However, he really gave us no direction as to what to do now. She cannot, we cannot, live like this!! I think we both came away shell-shocked and depressed. He threw a lot of information and facts at us, as he always does, and we were overwhelmed. He wanted to use Heparin, which he always does. Which Noelle cannot use due to a genetic possibility that it could cause a stroke. (That is how Scott's mom died:() He thinks her heart may not be functioning well causing oxygen to not reach her extremities. So then I think cardiologist, but he recommends a powder. Our next appointment with him is in July. Wow.
I am not a doctor!! I feel ill prepared to manage all of these ideas and notions and possibilities about how to help Noelle! The ones we have tried: Silver, Ondamed, accupuncture, massage, IV vitamins, IV glutathion, infrared sauna, gluten free diet, numerous prescription and supplemental pain relievers and anti anxiety/depression, and many more. The ones that people are still suggesting: Herbal protocols, Rife machine, no sugar and other dietary restrictions, and many others. All that on top of numerous oral and IV antibiotics.
I am looking into a medical center in Arizona. There are a couple of Lyme facilities there. Apparently they settle in Arizona due to the medical licensing that allows them to have naturopathic and medical doctors in the same facility. Which I do believe is necessary. I just don't know how to balance it all. If this is what we are supposed to do it is going to take a work from God. I am ready to jump on a plane. Scott is not ready to even talk about it. And Noelle is hesitant to leave home. Though I think the longer this is going on the more flexible she is about things. She has had a headache every day since September of 2012! She has had additional body pain every day since August of 2013! That is two and a half years of being in pain every day!! Every day is a battle for her to survive until she can sleep again. That is not what I want for my lovely daughter!!
I am not a doctor!! I feel ill prepared to manage all of these ideas and notions and possibilities about how to help Noelle! The ones we have tried: Silver, Ondamed, accupuncture, massage, IV vitamins, IV glutathion, infrared sauna, gluten free diet, numerous prescription and supplemental pain relievers and anti anxiety/depression, and many more. The ones that people are still suggesting: Herbal protocols, Rife machine, no sugar and other dietary restrictions, and many others. All that on top of numerous oral and IV antibiotics.
I am looking into a medical center in Arizona. There are a couple of Lyme facilities there. Apparently they settle in Arizona due to the medical licensing that allows them to have naturopathic and medical doctors in the same facility. Which I do believe is necessary. I just don't know how to balance it all. If this is what we are supposed to do it is going to take a work from God. I am ready to jump on a plane. Scott is not ready to even talk about it. And Noelle is hesitant to leave home. Though I think the longer this is going on the more flexible she is about things. She has had a headache every day since September of 2012! She has had additional body pain every day since August of 2013! That is two and a half years of being in pain every day!! Every day is a battle for her to survive until she can sleep again. That is not what I want for my lovely daughter!!
Sunday, January 19, 2014
Lots of Appointments!
We have lots of impending Doctor's appointments which lead me to ask for lots of prayer. Noelle has been in so much pain lately! Our biggest prayer request is for healing! If the Lord continues to choose not to work in that way, our request is for the doctor's to find a way to lessen Noelle's pain as she endures treatment.
Tomorrow, January 20th: Thank you Martin Luther for your strides toward racial tolerance. Though I can tell you as the parent of a multi-racial family we have a long way to go!
We have an appointment in Columbia, Missouri with Noelle's Lyme Doctor. It is a five and a half hour drive. Though Noelle likes the distraction of driving, it is not as comfortable as being in bed! Pray for her comfort as we drive. Pray for wisdom for the doctor. One of his main roles is selecting the order of Noelle's antibiotics. We are also interested in having her tested for co-infections, like Bartonella. This testing is not known for being reliable. However, we are currently paying for her IV medications out of pocket due to Lyme policy with our insurance company. If she was to test positive for Bartonella I believe that they would pay for another month of medications. Not sure what else we are looking for at this appointment. All of her symptoms are the worst they have been, so hopefully this will inspire her doctor to come up with something new!
January 22nd: Appointment with the community school district. We need to figure out a way that Noelle can graduate. She has not been able to study at all since about September.
January 28th: Appointment with immunologist in Ames. Noelle tested immune deficient. We pray that treatment will lead her to kill the Lyme more efficiently and quickly.
January 29th: Appointment with pain specialist. No idea what this will lead to. Obviously we are praying for better pain control!!
February 3rd: Appointment with yet another doctor to discuss the results of heavy metal toxicity and genetic testing.
February 9-14th: Every year Scott has the opportunity to win a trip. God has blessed his business and he won a trip to Mexico. I have not been able to travel with him for awhile so Scott, Noelle and I are traveling to Mexico. We covet your prayers. Travel will be an issue for Noelle due to anxiety and pain. We pray that there are no issues with her PICC line while we are travelling (infection, clogs, etc.). We pray that there is no reason for us to seek medical care in Mexico. Please pray that Scott and I are able to reconnect in a relaxed way. We are constantly going different directions!! Pray for Teme and Sabrina as they stay home with Scott's assistant.
March 6th: Appointment in St.Paul, Minnesota with a different Lyme doctor. We feel that it is time to seek a second opinion to be sure that we are doing everything possible to help Noelle heal. Noelle's friend from Canada sees this doctor and my sister has taken my niece there.
Tomorrow, January 20th: Thank you Martin Luther for your strides toward racial tolerance. Though I can tell you as the parent of a multi-racial family we have a long way to go!
We have an appointment in Columbia, Missouri with Noelle's Lyme Doctor. It is a five and a half hour drive. Though Noelle likes the distraction of driving, it is not as comfortable as being in bed! Pray for her comfort as we drive. Pray for wisdom for the doctor. One of his main roles is selecting the order of Noelle's antibiotics. We are also interested in having her tested for co-infections, like Bartonella. This testing is not known for being reliable. However, we are currently paying for her IV medications out of pocket due to Lyme policy with our insurance company. If she was to test positive for Bartonella I believe that they would pay for another month of medications. Not sure what else we are looking for at this appointment. All of her symptoms are the worst they have been, so hopefully this will inspire her doctor to come up with something new!
January 22nd: Appointment with the community school district. We need to figure out a way that Noelle can graduate. She has not been able to study at all since about September.
January 28th: Appointment with immunologist in Ames. Noelle tested immune deficient. We pray that treatment will lead her to kill the Lyme more efficiently and quickly.
January 29th: Appointment with pain specialist. No idea what this will lead to. Obviously we are praying for better pain control!!
February 3rd: Appointment with yet another doctor to discuss the results of heavy metal toxicity and genetic testing.
February 9-14th: Every year Scott has the opportunity to win a trip. God has blessed his business and he won a trip to Mexico. I have not been able to travel with him for awhile so Scott, Noelle and I are traveling to Mexico. We covet your prayers. Travel will be an issue for Noelle due to anxiety and pain. We pray that there are no issues with her PICC line while we are travelling (infection, clogs, etc.). We pray that there is no reason for us to seek medical care in Mexico. Please pray that Scott and I are able to reconnect in a relaxed way. We are constantly going different directions!! Pray for Teme and Sabrina as they stay home with Scott's assistant.
March 6th: Appointment in St.Paul, Minnesota with a different Lyme doctor. We feel that it is time to seek a second opinion to be sure that we are doing everything possible to help Noelle heal. Noelle's friend from Canada sees this doctor and my sister has taken my niece there.
Merry Christmas/Happy 2014!
Christmas was full of family! We were able to participate in most things, though Noelle and I headed home to rest a few times. Christmas morning we did have to head to the ER due to a clog in her PICC line. We had no idea what a specialty Picc line care is. None of the doctors or nurses in the ER were familiar with the protocol to deal with the issue. We ended up waiting until 8:00 and heading up to the Picc unit. Which will end in a double charge:(
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