Lyme Disease Support Group

I really enjoy these appointments. She's really good when you do some of the day to day work in conjunction with the treatment.

Day to day work you ask?

I do a journal/signifigant events document by day. I do a list of administrivia for my data collection here's the list of Admin data:

1. Date

2. Meds I'm on

3. Physical manifestations (Where I hurt, What marks I have on my body, etc)

4. Body Temp

5. Resting Patterns (Hours of sleep etc)

6. Pain levels

My marking these items, it really makes the LLMD happy in that we can easily match up physical effects to med activity.

I also do charts on Body temp. She thinks this is wonderful because it allows her to use body temp as a method to quantitatively analyze physical reactions.

I take my temp morning, noon and Night, every day. I put it into one of my Stat tools at work and produce charts showing the mean temp by time slice, and chart showing all temps in one graphic.

Yeah, that's a mouthful but it's very informative...and for some reason has completely got the insurance company on our side in terms of treating the illness, And it lets me apply my skill set to my healthcare.

So, after all that, We had performed a skin biopsy last week on my feet. My feet had sweeled up and start bleeding. I also had a wierd dot rash in patterns on both feet.

She got the results back and was somewhat stunned they found Babeosis and bartonella in quanitity. So She has added Mepron and Azith to my meds set.

Also, we have made signifigant progress on one front. My mental accuity has improved remarkably. I'm somewhat stunned at how well my brain is working. It's like a light switch has been flipped back on.

Not all good news though, My joint pain and muscle activity has gotten worse. I'm a shakey weak mess. We just have to stay the course until the meds get on top of those symptoms.

Also discussed my Ingenex results again, they sent another workup on my intital blood tests. The same blood was used to run a backup set of tests. Never heard of that before.

But, My results were slightly different on this assay.

IGM

20 IND

30+

41++

IgG

41++

30+

58++

The tests for co-infections came back negative. Which kind of stumped us in that we had a skin test showing a lot of Bart and bab. In her opinion, this set of tests confirmed the Lyme Complex diagnosis.

So, in closing, I'm sick as hell but getting better

AND

If you want to make your life easier, take some notes.

If you have the data, I might be persuaded to run it through the stat tools I use and send you a few graphics to help your docs.

LAter,

Splodo

Post edited by: Explodo, at: 11/10/2011 06:11 AM

I was prescribed a cortiosteriod for a fixed drug reaction on my penis. When the drug was applied, the reaction went absolutely insane. It was horrible!

The doc finally saysto me yesterday...LCD doesn't like steriods...in fact is makes things worse. In her opinion, the corteosteriod made the situation much worse. So no corteo's for me. Who would have thunk it.

Sounds like you and your doctor are workign really well together. How great that you are able to use your skills to assist her in her work and provide quantifiable evidence of your symptoms and their progression.

Very interesting about the skin biopsy. What did the rash look like on your feet? Just wondering because I broke out in an all over rash after having a virus recently, and I was wondering if Babesia was involved.

Rash has faded now that I'm on mepron and artemisin.

Very happy that your cognition is improving! You're doing great. I'm sure the other symptoms will lessen over time.

Mine seem to be going backward from yours -- joint pain has really almost disappeared, but neuro and cognitive symptoms are increasing.

One was red blood blister looking things that dotted my feet. They would pop and bleed for a little bit then start hurting like mad. Then the skin would peel off in about a half dollar sized flap

The other was little squigly line looking things that looks akin to tiny tiny tiny red/pink vericose veins. they really started appearing in large numbers after I started Abx treatment

it's amazing how many people have co-infx and don't know it. the testing for those are worse than the Lyme testing.

in wisconsin, my state, we are doing everything we can to get the word out on the co-infx as, many times, they are worse than the LD.

get educated everyone. these are horrid infections and need to be treated as well as the lyme. otherwise the lyme clears up ANY and it gives these guys more room to wreak havoc.

bartonella and babesia are at the top of the list. there are SO many more, too. it's hard to believe that ticks can be infected with so many critters, but it's the truth. sad, sad truth.