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1 Year Progress Report (long)

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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)

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