Guest guest Posted June 7, 2000 Report Share Posted June 7, 2000 Hi Folks! Lynn's comment about progress coming in 3 month intervals prompts me to share with you my experience after one year of IV antibiotic therapy. My purpose in sharing is to celebrate with those that know, and to reaffirm our knowledge that long term antibiotics are necessary. Some of you know that I am an RN, misdiagnosed for 5 years after 2 tick bites and an atypical rash. Yup, I got the FMS, then CFS diagnosis and only after becoming housebound and nearly bedridden did I find someone who knew about LD. My PCP was willing to put me on morphine and fill out disability papers, but not willing to even discuss Lyme Disease. I started IV Rocephin one year ago next week. A couple of months later added IV Azithromycin. Am basically following the rest of Dr. B's protocol. I am sooooo much better!!! And I have noticed my biggest improvements came at 3, 6, 9, and 12 months of therapy. And the change seemed sudden.......the weeks in between would drag on with no changes and then " bang " ....I would feel a difference. I had never heard this theory, so imagine my surprise when I had figured this out, reported my thoughts to my Dr. and she confirmed that this is known.....and now Lynn states the same thing!!! I am convinced that 4 weeks or 3 months of any med is not going to make a difference and that long term means LONG term! The last 4 weeks have been so much better. Many of my neuro symptoms have gone, except they return a little when herxing, my pain and fatigue are better. I have my PASSION back!!! I am probably at about 50% of my normal on a good day.....unfortunately that is not consistant! Yesterday I went to the grocery store for the first time in 2 years! Bought food, prepared corn, made pasta salad, and a strawberry rhubarb pie!!! I have not made a meal in almost 2 years. Along with my antibiotics, I try to eat well, rest (I hate that word!) and be patient (hard to do ....esp with all the awareness activity that I would like to participate in!) I started Physical therapy about 7 mos into treatment....when I felt like I had the mental and physical power to do it. I have spent 3 months just doing stretching exercises....a pretty wimpy regime but all I could manage. I am now starting to use light weights for strengthening. I am starting to walk for exercise.(I would walk more if summer would ever come to Maine!) I also started acupuncture for pain....I know if I can get this pain under better control I will be able to do even more. I am very allopathic, and had some real doubts about how helpful acupuncture could be, but after just 2 visits, the " cement " has left my back!!! And it has lasted for a week.... I go back today for my 3rd session. I still have pain, but even the physical therapist remarked at how much more limber I am in our sessions. I am so fortunate that I have a great husband who has been both father and mother to our teenage sons for the last 2 years. My insurance pays for everything (knock on wood!), and I got SSDI on the first try (thanks to my MD's meticulous documentation!) But I know that is not the case with many folks....I know how devastating this illness is....and I would guess that my life will now be spent on LD advocacy like most others on this list. I spend a lot of time researching, writing letters, and now helping others in my community who may have LD. I thank all of you here on for the information, direct, and indirect support I have gotten from all of you over the past year. (NOW I am going to get weepy!!) Happy (Maine) Quote Link to comment Share on other sites More sharing options...
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