I can’t thank you all enough for your incredibly supportive emails and comments on my last post. You guys have become my family and my support. Now that I have that little bit of “Lyme Rage” out of my system I should probably take some time to explain what I am up against right now as far a treatment goes.
I was on and off the Donta Protocol for about a year and had a great deal of success with it when I was able to tolerate the meds. However the protocol really trashed my gut so I was never able to get up to the full dosages on any of the medications and after almost a year of trying my stomach problems were so bad that I had to stop. At the time I stopped I was feeling quite well and had myself convinced that I had recovered. Unfortunately this was not the case and the terrible joint pain and fatigue ended up returning, followed by the Neurological symptoms.
After I could no longer take the Donta Protocol I looked into a local alternative clinic that offers the Stephen Buhner herbal protocol but the cost for the herbs alone is $200.00 a month not including the consultations, acupuncture and massage all which I believe was $70.00 an hour on top of the herbal medications cost. Don and I are not even making enough right now to get through each month without adding to our credit card balance and we have not one penny put away towards oil. So how in the world could I come up with that kind of money each month.
I finally went to see a Rheumatologist and he ran some tests and declared that I no longer have Lyme but a new genetic disease according to the B27 test which showed that I have that gene. He did agree to redo the Lyme test one more time at Stony Brook where I got my last overwhelmingly positive and reactive test results, but he said that if the test came back negative that I no longer have Lyme. Somehow, magically I suppose, despite that fact that I have never been able to work my way up to the full dosage of antibiotics, poof, the Lyme is gone and I now have a completely different disease. He vehemently disagrees with all of the research that the LLMD’s have done and when I questioned him about it, it had NOTHING to do with whether or not the patients were getting well or not, it was because he says they have not done double blind placebo testing. Because of that one idea in his head he refused to even read the information I brought for him to read by Dr. Joseph Burrascano, the ILADS position papers, the Donta Studies, Dr. Scott Taylors “A plague of Ignorance Regarding the Ignorance of a Plague” . Then when I called his office with information about getting the diagnostic kit from Stony Brook, they said they would call me back and they never did.
I came home from that appointment had a good old fashioned pity party and sobbed for about half an hour then I picked up the phone and started calling ILADS doctors in Mass and Ct. One of them had his license revoked because he was making his patients sign a medical release and then he was injecting them with peroxide. No thank you!! Others were not taking on new patients or the phones were disconnected. The last one I called was Dr. Steven Phillips in Wilton Ct. he is the president of ILADS so I had little hope that he was taking on new patients. When the receptionist said that he was taking on new patients and that he could see me at the end of October I whispered a prayer of thanks, that is until I asked about insurance. He does not accept my insurance and the first appointment was going to be $725.00 for 1 hour and each follow up visit was $300.00 never mind travel expenses and gas. I started crying so hard that I could not even properly finish the phone conversation. I sat on the couch and asked God “What is it that you want me to do? What am I missing, what am I doing wrong that every door is closing on me? What do you want from me?”
Then while I was sick with a nasty flu, placing a post on another blog about the LAAP project, uploading new poems and artwork to the cyber gallery, and trying to get a screening of Under Our Skin here in Brattleboro that person sent the reply to my post that triggered my “The Sin of Silence” post. Anyway, I lost my temper, I was feeling sorry for myself and I wanted to just give up. It felt like the fight was going out of me and that I would just keep getting sicker with no support from either the medical world or my family. I sent that post to my family via email and not one person responded. They have all completely ignored my struggle with Lyme and even when they see me walking with a cane, laying down when we visit because the pain is too much to get up, not one word is spoken. I don’t know if you can even imagine how badly that hurts.
In September I have an appointment with my new primary care doctor here in town. I made that appointment in May and it took 4 months for me to get in. I have no idea what her beliefs are on Advanced Lyme but I do know that she went to SUNY (Stony Brook) I am hoping this is God’s leading. I am hoping that He is leading me to someone who truly cares about her patients and has a better understanding of Lyme and it’s treatment protocols. For now I am just waiting on God’s plan for me and doing everything I can to raise awareness so that others get early treatment. Despite the fact that it is making me increasingly unpopular.
I was on and off the Donta Protocol for about a year and had a great deal of success with it when I was able to tolerate the meds. However the protocol really trashed my gut so I was never able to get up to the full dosages on any of the medications and after almost a year of trying my stomach problems were so bad that I had to stop. At the time I stopped I was feeling quite well and had myself convinced that I had recovered. Unfortunately this was not the case and the terrible joint pain and fatigue ended up returning, followed by the Neurological symptoms.
After I could no longer take the Donta Protocol I looked into a local alternative clinic that offers the Stephen Buhner herbal protocol but the cost for the herbs alone is $200.00 a month not including the consultations, acupuncture and massage all which I believe was $70.00 an hour on top of the herbal medications cost. Don and I are not even making enough right now to get through each month without adding to our credit card balance and we have not one penny put away towards oil. So how in the world could I come up with that kind of money each month.
I finally went to see a Rheumatologist and he ran some tests and declared that I no longer have Lyme but a new genetic disease according to the B27 test which showed that I have that gene. He did agree to redo the Lyme test one more time at Stony Brook where I got my last overwhelmingly positive and reactive test results, but he said that if the test came back negative that I no longer have Lyme. Somehow, magically I suppose, despite that fact that I have never been able to work my way up to the full dosage of antibiotics, poof, the Lyme is gone and I now have a completely different disease. He vehemently disagrees with all of the research that the LLMD’s have done and when I questioned him about it, it had NOTHING to do with whether or not the patients were getting well or not, it was because he says they have not done double blind placebo testing. Because of that one idea in his head he refused to even read the information I brought for him to read by Dr. Joseph Burrascano, the ILADS position papers, the Donta Studies, Dr. Scott Taylors “A plague of Ignorance Regarding the Ignorance of a Plague” . Then when I called his office with information about getting the diagnostic kit from Stony Brook, they said they would call me back and they never did.
I came home from that appointment had a good old fashioned pity party and sobbed for about half an hour then I picked up the phone and started calling ILADS doctors in Mass and Ct. One of them had his license revoked because he was making his patients sign a medical release and then he was injecting them with peroxide. No thank you!! Others were not taking on new patients or the phones were disconnected. The last one I called was Dr. Steven Phillips in Wilton Ct. he is the president of ILADS so I had little hope that he was taking on new patients. When the receptionist said that he was taking on new patients and that he could see me at the end of October I whispered a prayer of thanks, that is until I asked about insurance. He does not accept my insurance and the first appointment was going to be $725.00 for 1 hour and each follow up visit was $300.00 never mind travel expenses and gas. I started crying so hard that I could not even properly finish the phone conversation. I sat on the couch and asked God “What is it that you want me to do? What am I missing, what am I doing wrong that every door is closing on me? What do you want from me?”
Then while I was sick with a nasty flu, placing a post on another blog about the LAAP project, uploading new poems and artwork to the cyber gallery, and trying to get a screening of Under Our Skin here in Brattleboro that person sent the reply to my post that triggered my “The Sin of Silence” post. Anyway, I lost my temper, I was feeling sorry for myself and I wanted to just give up. It felt like the fight was going out of me and that I would just keep getting sicker with no support from either the medical world or my family. I sent that post to my family via email and not one person responded. They have all completely ignored my struggle with Lyme and even when they see me walking with a cane, laying down when we visit because the pain is too much to get up, not one word is spoken. I don’t know if you can even imagine how badly that hurts.
In September I have an appointment with my new primary care doctor here in town. I made that appointment in May and it took 4 months for me to get in. I have no idea what her beliefs are on Advanced Lyme but I do know that she went to SUNY (Stony Brook) I am hoping this is God’s leading. I am hoping that He is leading me to someone who truly cares about her patients and has a better understanding of Lyme and it’s treatment protocols. For now I am just waiting on God’s plan for me and doing everything I can to raise awareness so that others get early treatment. Despite the fact that it is making me increasingly unpopular.