Saturday, August 29, 2009

About the Lyme test

First you'll need a test kit from IGENEX I would do the #6040 full panel test, you will need a doctors order to have the blood draw. Once you have that you can have the draw at any lab - but not all labs send the test back to IGENEX. If they don't you will need to FeEX it yourself or go to Hunter or LabCorp double check that they will send the blood to IGENEX. you will need to follow the trail to make sure it gets to the right lab.

testing take about 3 weeks, the results then goes to your doctors office, you will need to follow up and get a copy for yourself - not all doctors know how to read the test. Once you have the results you can call the lab if needed and talk to Dr Harris to go over them. If it tests negative don't get too comfortable yet, the next step would be to possibly have a dose of antibiotics then have a Urine test. If your Lymes test is positive I would then have another blood test the #5080 (I think that is the number I would have to double check) confection test.

Here is my Lymes blog
under my picture you will find lots of links and my doctors information link.
If you do have Lymes short term antibiotics don't work, you need to make sure the doctor you choose knows about long term antibiotic and continues even after for a little while after they think it is gone, you also need to make sure that the doctor knows about co-infections when choosing the doctor

Monday, August 17, 2009

Allergic reaction to the picc-line dressing

I have had the picc-line for almost 4 months and finally had some improvement. This gave me a moment of catching my breath and the ability to continue the fight.

Within a few days the fight was back on in a major way I started to have an allergic reaction to my IV dressing. I felt as if I was being branded with a hot iron. It was itching like crazy, hurting and starting to turn red, I asked the nurses what they thought and no one wanted to take responsibility, they say talk to the doctor, but the nurses are the ones that are seeing it when changing.

I was starting to crumble and getting very scared, no one was listing to me, it didn't feel as bad but it was not good. I went back to the hospital and to the original nurse that put the line in and we decided to pull it on August 15 so it could heal and we could treat it. We did not want the oozing protein from rash to give me an infection.

I have a week off so I can teach my workshop – I don’t feel so hot but still need to make money if at all possible to pay for everything. I get nauseated for periods during the day, which passes; this could be from my liver and all the drugs or from all of the supplements that I need to take to try to keep my immune system up (if possible).

We will need to reinsert the line when I return, which I am not terribly thrilled with, but if I can have a little rest, I might be in a better mindset for the fight again. My mental state was getting very depressed from fear and thank god for that little bit of good news, which was only a tiny thread for me to hold onto.

What I have decided to do is a strip test on one leg first before we reinsert the line, I want to see if I can find where the problem is and to what I am having a reaction to. If is not a clear reaction I am wondering if the wound site was not allowed to completely allowed to dry before the bandage was put on and had a chemical reaction or perhaps it was the steri strips, but I am trying to find out as much as possible first.
Had the picc reinserted August 25
As soon as I returned from my workshop the next day I had the picc reinserted, During my week off I tried different bandages on my leg and it all looked good but I didn't see a small reaction under one of the bandages. E used the Sorba View dressing and within a day it started itching and turning red again I immediately went back to the hospital and had them change it to the Oposite 3000 which had no reaction on my leg.

This picc line was more difficult (not fun at all - this was harder than the first one) I had a basil reaction in the vein making it very very painful and my arm bruised. Partially my fault I think - I know better I should have been more hydrated. Since I was just returning from the workshop and zooming to the hospital I didn't drink as much water as I should have.
After only 1 day the reaction started again, as you can see. We changed to the Opostite 3000, but was still now branded on the other arm, and it was itching, I spoke to the doctor and picc nurse to see if it could be possible to peel back the bandage just a little to expose the irritated area. They said yes if I could still leave a wide area protected from the insertion site.
I am so glad I did - now two weeks later it is starting to look normal again.

Saturday, August 8, 2009

Finally some good news

Finally some good news - my numbers are starting to change and I have them on the run! but still have a long ways to go. My CD57 otherwise called the Stricker panel has gone up from 19 to 57 I still have a ways to go to get to 200 but I have a glimmer of hope again

Thank you for your support - what a long road, I was starting to think I might need alternative plan, it was suggested by some doctors to start thinking about Stanford or UCSF, but for now I am very happy with my current treatment. - (as happy as one can be with an IV-pic-line, a million other pills and spending thousands of dollars etc.)

There is such a difference in opinion in the medical community and not much knowledge about it "especially" out here on the West Coast. I do sometimes hesitate to talk about It or think I might be judged by those who only want to hear happy thoughts but since my journey was one incredible obstacle after another, and there was so much wasted time in-between. I think it is more important to bring awareness to this subject. I have seen and spoken to people that have been devastated and crippled by this disease and completely feel hopeless. What an education this has been and knowlege is something that should be shared.

Parkinson's Disease or Lyme Disease

If you or anyone you love is diagnosed with Parkinson's Disease, please, please, please - see a Lyme literate Md, have a blood test through IGENEX tick borne specialty lab only ( ). Join a lyme disease forum for patient help with finding a Lyme literate Md and how to get tested.

There are many, many stories about patients misdiagnosed for years with Parkinson's only to find out they had Chronic Lyme Disease.

For more information see the links below and check back often as more will be added as they are discovered.

A message from another forum:

Did you know that Michael J. Fox was diagnosed with lyme disease three years before being diagnosed with Parkinson? Did you know that 4 workers on his movie set were also diagnosed with Parkinson? The movie set was in Conn. - lyme country. My brother in law was diagnosed 20 years ago with Parkinson, 10 years before that he was bitten by a tick while camping. He is starting his research on the correlation between the two! My husband was diagnosed with bipolar, dementia, degeneration of the brain, parkinson, etc. etc. Four months ago he was finally tested for lyme disease tests were positive including spect scan. He has been on antibotics for four months now and doing quite well. Each month he gets better and better. I had to fight tooth and nail for a Doctor to listen to me to no avail. Finally, I took him to see a Lyme Literate Doctor and the rest is history. Just wanted you to know and to take your conditions into your own hands, the Dr.s don't know everything. We are living proof of that.