wiggy's blog

Vitamin D level at 81 - Yay

I had viamin D level check in 2009 and it was in the 30's.  Now a 81, so happy!

Thank-you for your support!

Thank-you all for your votes and support in the Accessible Vehicle Contest.  I did not win but I knew it would be tough as 1200 people were in prior to me entering the contest.  There were a total of 1600 people that entered the contest, many with hard life stories.

 

We will be looking at 2 used vehicles today - I'll keep u posted!

 

Thanks again for voting,

Estelle

Need your votes!!!

I am still not able to walk to back of minivan and pull down my scooter.  I have been trying

 

to get there since 2008.  I am stronger but not consistently strong enough.

 

My daughter (now 12) entered me into a contest and I need your votes, they are giving away

some accessible vans.  The National Mobility Equipment Dealers Association (NMEDA<) is a

non-profit organization dedicated to expanding mobility options for people with disabilities.  

I am asking for your help because the people with the top ten highest number of votes will

be entered into a lottery type process (and we got in 1 month late :().

 

2012 Brain/Spine MRI

I have attached the recent brain/Spine findings.  I had my IV line pulled and went for MRI.  It shows NO ACTIVE LESIONS!  Also it suggests a lesion is gone from brain as in its place there is atrophy.  I still have several old lesions.  It also found a diffused disc bulging at C6-C7.  It was a more powerful machine so they talk more about areas of brain/spine.  If anyone understands what else this is saying and could tell me in laymens terms I would appreciate it.

 

Trying to post MRI Info but having problems

Just had brain/spine MRI and it looks good, well no activity going on.  I did have one

question on brain finding.  I will have to get Mr. Wiggy's help to post this later.  They put me on

a more powerful machine and they did comparison from 2002.  I did not start on abxi<

 

until 2006.  This is my last MRI - tired of that test.

 

They normally just compare to previous , which would have been 2007 and more

 

interesting for me.  I am feeling much better and that is most important.

2012 Brain MRI

MRI - How long to be off abx before I have this done?

I am due for another MRI - I thought someone told me to quit abxi before I have test but I

can't remember how many weeks before taking test?

 

Any information would be helpful...

Time again for Flagyl - continous???? You are kidding

I was in PT for a month and was able to work with 2 therapists I worked with in the past. PT noted the following improvements: Standing balance better, transfers better and able to transfer out of low chair (couldn't prior year), gait better able to walk 60 feet with walker. I am now typing with left hand, could only type with right previously. My typing with left hand is good and bad - up and down. Some days I can and others I can't. My walking still up and down - I believe it will be the last thing I will get back. My left side the problem, can not pick up leg, instead shuffle across floor. We have noticed leg is working a tiny bit better but I have a ways to go. I am up to 4 grams of rocephini and tolerating, The doctor up'ed my dose on Mar. 14.

I am doing well on Rocephin

I have been on IV Rochephin for 8 weeks and feeling pretty good. At first I was exhausted and napped everyday. I am still napping as it helps me through the day, but not as tired. I saw the doctor on Dec. 20 and we will continue for an additional 6 weeks. He is putting me in Rehab and I start next week. I will go 3 x a week and will report any improvements I make. We have noticed that I seem stronger with my transfers and my legs are moving more but can't tell for sure these as I am still on a Roller coaster. Keep in mind that the meds have taken a toll - making me so tired - not keeping up with daily activities and not exercising at all. Will see how I do as I start back in Rehab. Happy New Year everyone!

It is time for the dreaded PICC line

Monday morning I went to the hospital for something I never thought I would have to do...The PICCi line. Over the summer I was able to try the Underwater tread mill, which was great. I was strong at the end of August as it really built up strength in hips, thighs and gluts. The tread mill was too fast for me even at the lowest speed so the PT just let me walk in water at my own pace for 30-40 minutes. My LLMD wanted me to do IV abxi in 2008. Due to cost, that I have CPNi and Lyme and some peoples bad experiences I decided to stick with orals. Last year I tried to rebuild every muscle group to improve my walking.

It has been a year - where does time go

I guess I have been busy trying to get better. I am currently trying to really focus on walking. I was not walking at all in home with out husband home until LAST WEEK due to fear of falling. I am currently walking in home 40 feet and repeating this 10 times. I picked smaller length and focus on walking correctly to retrain brain. I am finally strong enough to do this safely. My head hurts, hips and legs after my walk and feet tingle. Last Spring - homecare had me walking about 50-80 feet. I than went to PT where in 6 weeks they had me walking 100 feet and let me go. In Fall - I went back to PT as walk wasn't functional. I sprained left ankle which was a huge set back.

Plaquenil 400 mg + zithromax - 500 mg

My doctor put me on a new combo that I started yesterday. Hopefully it will go ok - the good news is I can go in the sun. I was on high dose doxyi and had to avoid the sun. I learned that plaquenil is a cyst buster and I have not been on a cyst buster for almost a year so that does make me nervous. He said I may herx in about 10 days. I had 60 days of homecare and they got me walking 50 steps with walker (been hanging in wheelchair too much) but fear of falling keeps me there during day when no one is home. I try to walk every night - do not get to far but at least I am doing it.

Dr. thinks I should be better in 2 years

I am on same combination doxyi 400, omnicef 600 and pulsing probenecid like flagyli. I take it until I can take no more and wait for recovery. The probedicid only increases Omnicef in blood. My vit. D level is 32 - he up'ed level from 2000/day to 4000/day My CD-57 is 34 - Lyme marker showing active infection - I need to be at 60 at a minimum.

Finally - movement in right leg

My current combination is doxyi 400 mgs, Omnicef 600 mgs, and pulsing probenecid. No probenecid is not an abxi but I take it to increase level of abxi in bloodstream. Last Dr. visit I asked my Dr. if he could up my dose of Omnicef. He said if he did that it would just go through me but he could give me a drug that would keep it in my system longer.

Feeling bad - Herx every 4 weeks

I am to add a new abxi, omnicef, as of last week but not yet feeling good enough - legs in mud, tired, not sleeping well due to leg pain. Found out iron is depleted - supplementing daily. Also hypothyroid. He said should be medicated but did not write script yet. Told me to take temp. It explains why I have 0 energy. He told me to add lecithin , borage oil and olive oil to help remyelinate. I have leg pain every night - he called it restless legs. Wrote me script but haven't filled yet. He told me to take diflucan only 1/week as yeast much better. I still take doxyi 400 mgs/day. Thats all for now.
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