Today I start my new treatment protocol. It is similar to my last, except higher doses, and pulsing them every other day instead of everyday. The new doc believes in letting the body rest, so he wants me to do three weeks on, and one week off each month. It's called a drug holiday. The Lyme and babesia are hard little buggers to treat, but hopefully I can make a dent in the bug load.
The appt. went well! The nurse did her usual physical exam followed by a detailed history of my meds. She then called Dr. J to go over any changes that I need to do. Basically he believes in 3 weeks on meds and one week off. That gives your body (liver) a break from so many meds. He also added flagyl to the mix...a cyst breaker.
She warned that I will probably get worse cause of the med changes and herxing, but I have been preparing for that anyway. Luckily I have the love and support of friends and family. We talked about IV treatment, but its extremly expensive....so I need everyone to start buying lotto tickets....then win....then loan me the money....hee hee. And for those of you who asked, its $30,000 for 6 months of treatment. Can you say "Holy Cow Batman!"
I leave for my apt. tomorrow. Jeremy and I are praying for a good flight with no delays, and nice weather. Natalie and I are flying out in the morning. Some of my symtpoms are returning, but nothing like before.
Im happy to announce that I have been symptom free for a week now. I know the disease is still in me, and Im just keeping it at bay, but it is awesome to be symptom free.
I know that whatever treatment Dr. J will prescribe will probably make me worse (herx reaction) before getting better, but it's days like this that give me hope. Why change things if I'm feeling good? Well, I want to blast this infection out of me...not just repress it. I don't want to take antibiotics forever.
IV would be my best shot, but we may just have to try orals cause of financial reasons.
Jeremy's cousin Bob just got diagnosed also with Lyme and possible co-infections. He is really struggling too, so we need to pray for him and his family. He has just started treatment and is herxing pretty bad.
Jeremy and I have been so blessed by our community of friends and family. Since I began to get sick last May, people have bought us groceries, cleaned our house, provided childcare, prayed over us, made donations, and the list goes on and on. We are so grateful for everyones support.
I thought I would blog about a question some of you have asked. Why can't doctors fix it? And why isn't insurance covering it?
This disease is a nasty bug. It is called the 'Great Imitator" because it can look like so many other conditions, and there is no real good test for Chronic Lyme disease. Doctors, especially in the South, have not been trained about it, and therefor, don't believe in it. I remember too clearly one of my doctors saying to my face "Lyme disease doesn't exist". I couldn't get away from him fast enough.
In addition to doctors who misdiagnose, is insurance company's who only adhere to the "four weeks of antibiotics" and claim you cured. They refuse to pay for orals or IV's beyond that time limit and if you still are suffering, they say you are suffering from "Post Lyme Syndrome" instead of the truth - Lyme disease is a debilitating disease that could take years to treat.
Most people I've talked to are hoping for remission rather than being cured. Ive only heard of two people getting cured. One girl did 2 years of IV drugs plus 4 years oral. The other girl took 7 years oral. And its not just one med....its several, with changes ever so often to 'surprise' the bacteria.
Well, I would settle for remission, but I DON'T want to grow old with this disease. So, my goal is IV treatment one day. Insurance will pay one month, and I have to pay the rest. It's hard having a disease that doctors don't believe in and that insurance doesn't cover.
That is why Im excited to see this new doctor in South Carolina. I will see his nurse first, then the second visit will be with him. He is famous...in a new documentary about Lyme disease.
Fro two days, my ear has been pounding...nonstop. Its like someone is tapping on my ear drum. This has happened before. Its so annoying. Usually it is a warning that I'm about to get vertigo. So far, no vertigo. thank goodness.
Today I will buy my tickets to see Dr. J in South Carolina. Actually I will see his Nurse at this first visit. Then see him for 2nd visit. He is supposed to be one of the best...so hopefully it will be worth the time and money.
Some poele already donated some money,....thank you so very much/ Hopefully I will one day be able to get IV antibiotics, since insurance is a joke with this disease. Thank you everyone!
I got this from another blog....great explanation!
"Lyme Disease is a very difficult disease to diagnose and treat. Many patients go years and years consulting many physicians only to be diagnosed with the "catch all" disease such as MS, MCS (Multiple Chemical Sensitivities), CFS (Chronic Fatigue Syndrome), Fibromyalgia and some, like myself go from doctor to doctor receiving no diagnosis for such unusual and hindering symptoms. The test for Lyme Disease is a test that measure the antibodies that your body has developed as a result of it invading your system. However, the test can produce many false positives and false negatives and has a low percentage of accuracy allowing most physicians to ignore the results and dismiss the patients inquiry. That is why if Lyme Disease is suspected (either you were bit by a tick and got a bulls-eye rash or your symptoms match up) it is best to visit a LLMD or otherwise known as a Lyme Literate Medical Doctor. These doctors are experts in their field in diagnosing and treating Lyme Disease patients.
Another reason to be seen by a LLMD is most often they do not follow the rigid diagnosis and treatment guidelines of IDSA (Infectious Disease Society of America). These guidelines state that "chronic Lyme" does not exist and if you do have Lyme according to CDC standards (positive ELISA and Western Blot) then a short 28 day treatment with antibiotics should suffice. This short treatment leaves many Lyme Disease patients extremely ill and allows the bacteria to stay in their body reaping havoc on all body systems.
Most often Lyme Disease takes root in the brain and nervous system causing the patients extreme pain, seizures, cognitive issues, heart arrhythmia's and the list goes on and on. Lyme Disease can also take root in your joints causing what is known as "Lyme Arthritis". LLMD's are skilled in identifying the symptoms and developing a long-term treatment plan that most often consists of drugs to calm the brain and nervous system and to help control pain, high doses of antibiotics (IV or Oral or both) and supplements. Once a patient starts their treatment program, especially the large doses of antibiotics, a Lyme Disease patient will most likely experience a reaction called a Herx as a result of the Lyme bacteria releasing endotoxins. This reaction can cause extreme pain (muscle/joint/bone/nerve), horrible headaches, chills, fever, reduced cognitive function and an increase in overall Lyme symptoms. Although the treatment is difficult, a "Herx-like" reaction is a good sign the medication is working!
The documentary "Under our Skin" gives you a taste of what is going on in our society with the Lyme Disease controversy. Insurances refuse to cover the long-term treatment because of the cost. Meanwhile, thousands of Lyme Disease patients are suffering and are not able to get treatment or having to pay close to 25,000 out of their own pocket to get well. The IDSA set-up a protocol on how to treat Lyme when diagnosed, which has been repeatedly study by Lyme physicians and has shown to be very ineffective, often leaving the Lyme patient seriously ill. However, politics and money have invaded this disease and therefore insurances refuse to pay for treatment. Doctors are afraid to say they treat Lyme disease for fear that insurances won't cover their claims and most physicians just plain refuse to treat long-term out of fear of losing their license."
I hate taking pills, but then again, who likes to? On top of the 4 medications I take twice a day, there are other pills to help with the immune system, since lyme can wreck havoc on your immune system. I have to have a pill box just to keep up with the different times to take them. But, Im having some better days so maybe something is working.
Today we will take the girls to see Santa. I'm not going to allow a chronic illness to get in the way of Santa!
Welcome to my blog! Jeremy thought it would be a good idea for me to blog about my journey, so that I might be able to help others and to keep everyone informed. So far Ive seen two doctors who have confirmed my case and prescribed oral antibiotics. My hope is that one day I can get IV antibiotics since my disease is more severe. I've had some good days with the oral antibiotics, but I want to beat this disease,...not just live with it! It has been a scary ride so far, but Im getting more hopeful for the future. Please continue to pray for us.
I'm a Lyme Momma trying my hardest to get healthy again...while also helping the local community become educated about tick-borne illnesses. This blog is a little about my journey and also about Lyme Education, Advocacy, and Awareness.
Information is not intended to treat, diagnose, cure or prevent any disease. All information provided is for informational purposes only. Always seek the advice of your physician before making any treatment decisions. I am not responsible for any third-party information referred to from the site. I not take responsibility for the accuracy of any information and suggests that you do your own research and consult directly with your personal doctor.