Post by pattiecakes on Jul 13, 2005 7:08:44 GMT -5
I have been seeing a new LLMD since Early June. He is awesome. He told me that he has seen my kind of rash before and he was the first to confirm that it is lyme/possibly bartonella related. My lyme testing was POS.
He started me on Ketek 800mg and it slowly got better but I had been here before remember? It always hits a plateau.
Well all my co-infection bloodwork came back Neg from Igenex but he said that didnt matter.
He added flagyl every other week pulsed. I was worried about taking flagyl as I have heard so many horror stories but I did ok with it and still kept a slow steady improvement.
In between my 6yo son got rocky mountain spotted fever 3 days before we were to go on our once a year family reunion/vacation.
I rushed him down to my LLMD who confirmed what I thought to be true and consulted with my pediatric LLMD in conn. and they treated him with Doxy 200mg a day. (high dose for a 40lb peanut). His fever broke on the 3rd day like the dr. said it would and we had a great vacation at the beach. He had to wear an spf 50 surfer suit and flap hat but it kept him from burning on the doxy . I had a nice time as my lesions and rashes that were 75% over my body were down to just on my lower leg.
This week my dr. has me pulsing once again with different meds. I am on Biaxin 500mg twice a day and Levaquin once a day 250mg and every other week Ill add flagyl to get to the cysts. I am off all meds on Sat and Sun.
For the first time in 2 years I can go outside in the hot weather and wear shorts and short sleeves. My skin is soft again not like old worn shoe leather and I no longet have blood all over my clothing and sheets from the scratching. I have never before gotten my skin this clear x-cept for the times I was on prednisone and even the last time I was on it it did NOT clear my skin all the way.
Other lymey thing are comming to the surface now like my elbow that has restricted movement due to pain, low grade fever on and off and other various aches and pains.
I feel for the first time that I have hope. I was almost afraid to come and post as I do not want to jinx myself but I wanted to check in. There may be some of you with similar stories as mine.
For those of you that don't know me I had red striations up my legs in the early stages of this, a purple lesion, lots and lots of itchy bites and lesions that would get so bad that they would weep like poison ivy. It was everywhere. Many times I would cry and want to do myself in for I could not stand the itching anymore. I did NOT have fibers or insects but I still was not sure if I had morgellons or not. Considering there are many faces to morgellons.
So for the first time in 2 years I feel like I have control of my life again and just hope I can keep from getting a horrendous yeast infection from all these meds.
take care,
pattiecake
He started me on Ketek 800mg and it slowly got better but I had been here before remember? It always hits a plateau.
Well all my co-infection bloodwork came back Neg from Igenex but he said that didnt matter.
He added flagyl every other week pulsed. I was worried about taking flagyl as I have heard so many horror stories but I did ok with it and still kept a slow steady improvement.
In between my 6yo son got rocky mountain spotted fever 3 days before we were to go on our once a year family reunion/vacation.
I rushed him down to my LLMD who confirmed what I thought to be true and consulted with my pediatric LLMD in conn. and they treated him with Doxy 200mg a day. (high dose for a 40lb peanut). His fever broke on the 3rd day like the dr. said it would and we had a great vacation at the beach. He had to wear an spf 50 surfer suit and flap hat but it kept him from burning on the doxy . I had a nice time as my lesions and rashes that were 75% over my body were down to just on my lower leg.
This week my dr. has me pulsing once again with different meds. I am on Biaxin 500mg twice a day and Levaquin once a day 250mg and every other week Ill add flagyl to get to the cysts. I am off all meds on Sat and Sun.
For the first time in 2 years I can go outside in the hot weather and wear shorts and short sleeves. My skin is soft again not like old worn shoe leather and I no longet have blood all over my clothing and sheets from the scratching. I have never before gotten my skin this clear x-cept for the times I was on prednisone and even the last time I was on it it did NOT clear my skin all the way.
Other lymey thing are comming to the surface now like my elbow that has restricted movement due to pain, low grade fever on and off and other various aches and pains.
I feel for the first time that I have hope. I was almost afraid to come and post as I do not want to jinx myself but I wanted to check in. There may be some of you with similar stories as mine.
For those of you that don't know me I had red striations up my legs in the early stages of this, a purple lesion, lots and lots of itchy bites and lesions that would get so bad that they would weep like poison ivy. It was everywhere. Many times I would cry and want to do myself in for I could not stand the itching anymore. I did NOT have fibers or insects but I still was not sure if I had morgellons or not. Considering there are many faces to morgellons.
So for the first time in 2 years I feel like I have control of my life again and just hope I can keep from getting a horrendous yeast infection from all these meds.
take care,
pattiecake