About the Lyme test

First you'll need a test kit from IGENEX http://igenex.com 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 http://bellspalsylymesdisease.blogspot.com/
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

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.
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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.
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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.

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 ( http://www.igenex.com ). 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.
http://www.truthaboutlymedisease.com/phpBB3/viewtopic.php?f=10&t=777

What a long healing process

To look at me you wouldn't think anything is wrong, this is typical for many Lymes patients.

It is now hard to remember what feeling good is like. When I wake in the morning I think I might be getting better and plan for my day - then around 10-11am I still need to lay down or take a nap for a few hours this is so unlike me. I use to get up at 3:00 am in the morning to start work creating my DVDs or painting, then from 6-10am I would do my morning chores then paint again for the rest of the day. This all feels so foreign to have had to slow down so much, I realize I am lucky and am doing amazingly well for having such a low CD57 count I could be in much worse shape.

I felt better before I started the antibiotics, until the next big thing happened but this is all typical part of the healing process.

Things to know about a Pic-line

I found out a few things about the Pic-line today that would have been nice to know sooner and will hopefully be helpful to anyone else who gets one of these.

The clamp was getting very uncomfortable so a few weeks ago so I asked the nurse if she could cut it off - no problem- the next nurse that did my dressing change made it very clear that it was not a good idea because if the cleave broke I could bleed to death (nice to know). It is extremely rare, I then said to her that I had the special line that has a valve on the internal end, she then told me that this kind of IV line has only been out for about 6 months and should work fine - but did I want experiment with it. No.

The other thing she said is after doing the saline push at the end of each treatment try not push the syringe all the way down, try to leave a 1/4 inch of solution in the syringe because this prevents creating an airlock, if an airlock exists this can create a problem leaving one end open where the blood could back into.

I asked her what were the benefits for a slow push of the antibiotic, she said because it is very irritating to the veins, so a slow dilution is much better.

In general the pic-line is easy to live with, if you have it for awhile the the skin can become a little irritated so ask the nurse when having the to dressing change to go slowly or it may tear the skin a little.

When taking a shower in general they say use plastic wrap and tape, (but this is time consuming and leaves lots of tiny areas for water to seep into) for some reason they don't promote pic-line covers much. But I have to say the cover has given me just a bit of freedom back and well worth looking into. You can find this on my links section.

Never Give Up

In this is a battle you really can't turn your health over to the medical profession. You can not rely on normal or quick Lymes testing because over 40 % of the current testing will result in many False Negatives. If you rely solely these tests you will have a false sense of security when actually you may still have a raging case of Lymes or a Co infection.

Testing
You may have to battle your doctors to get the most accurate testing - I suggest IGENEX. Your doctor may say Lymes is not in your area and there is no need to worry about it - Don't believe it. The doctors or health clinics are not really aware of what may be happening in you area and during that time you are gradually getting sicker and sicker. The doctors may continue testing you for everything else under the sun and still not know what is wrong with you, while not even considering Lymes.

Antibiotics
You can not put all of your faith in your doctors, if they say a short 28 day coarse of antibiotics will take care of your Lymes problem - that is NOT true. If you have just been bit and they caught it within the first week or so that may be true (this scenario is very unlikely).

If you have tested positive and had symptoms for 1-2 months more than likely you will need to be on Doxy for up to 4 months 200-400mg 2-3 times a day. If you have had the spirakeet longer (mine was undiagnosed for at least 2 1/2 years, I had classic symptoms and they didn't catch it). If caught early you will need antibiotics for 4-8 months or longer and depending on the severity up to 1-6 years or longer. So the key is to catch it early. You may have to fight with your doctor for the treatment or find a Lymes literate doctor. One reason for the duration is the need to kill it during the many cycles it goes through, Lymes spirakeets will go into a cyst form to protect itself when it feels threatened or mutate, so you need to extend the treatment well beyond the time frame to make sure that you have gotten the bacteria.

If doctors tell you not to worry - it was not in long enough. Wrong - if it was not properly removed - you could have just squeezed the bacteria and parasites into you. (Never squeeze the body use a fine tweezers and remove it by the head).

Not all Doctors think the Same
Not all doctors think in the same way, you will need a doctor that uses integrative medicine (I wasn't interested, I just wanted them to napalm this thing but learned very quickly you really need both or you will be one very sick puppy). I would NOT suggest infectious disease doctors, you may be lucky and have one that really understands Lymes, but from what I have seen I am not impressed, most doctors are not educated in Lymes or only know basic information.

Most doctors will rely on the quick Lymes test which produces too many False Negative results. (I had 3 False Negative tests, my body was not making antibodies to fight this disease off).

When you get tested I would prefer to have a full panel Lymes test not all doctors know how to read them, so get a copy for yourself and look over the results and see if there is positive anywhere in the results. Some doctors will see that most of your results are negative and that is what they think. (Once I got the right testing done and got the results my doctor thought it was fine she didn't notice the 1 small positive result, I got a copy saw the small positive and called the director of the lab.) I showed my results to other doctors first, they were not interested, it was not their speciality and would not even look at it.

I thought I was Crazy
Most important follow you intuition, you MUST be your own advocate. - I hit every obstacle imaginable along the way, I was so wiped out but still tried to function, I thought I must be still recovering from the Bells Palsy or just lazy but actually the Lymes was systematically moving through my body, and it wasn't until one of my students pointed me in the right direction to the right lab where I started to get some answers. At this point I was feeling better and thought I must be crazy for pursuing more testing, but I also knew at some point another weird thing would attack me. I think of myself as a healthily person and all of this was just to strange so I knew there had to be an underlying problem. That is why I suggest the 6040 full panel Igenex test (and even then you may need more testing to find it) any other testing will lull you into a
false sense of security until it hits you again!

Get Accuarte Testing
The most common and cheapest tests are Enzyme-linked immunosorbent assay (ELISA), Indirect fluorescent antibody (IFA), and Western blot test. These are quick tests with results back in a few days these tests are used to look for the Lyme disease antibodies..... the problem is you may not be making anitibodies, meaning your body is NOT trying to fight this bacteria off. (I had no antibodies but still had a raging case of Lymes / Babesia.) The only chance you may have in finding the disease with these tests is if you are on a coarse of antibiotics which create a die off reaction that can then be detected. Insurance companies only pay for a very small portion if at all due to suggest CDC guidelines, these are hopefully in the process of being changed. This disease is very good at hiding and if you are on any antivirals or steroids or other meds or have any other variables you will have false negative results. Reasons for False Negatives more info on False Negatives

The Best and most accurate test -is much more in-depth and extensive it takes about 3 weeks for results, and if by chance that one comes back negative or the results are inconclusive you go to plan B. That means a very short coarse of antibiotics then the urine is tested. Please read How To Get Reliable Testing. For testing, IGeneX More information


Never Give Up you will have to fight for your answers.

Why insurance doesn't pay much if at all

First is: Diagnosis is not within standard guidelines.

Lyme diagnosis is not within standard of care

There is not such thing as Lyme disease (in this area)

Lyme testing used are not FDA approved or CDC approved i.e. Bowen, MDL, etc.

There is no clinical evidence of Lyme disease with this patient (based on being ill informed and lack of understanding of the stages and symptoms of Lyme disease).

Second is: Treatment is not medically necessary because of one of the two following reasons: 1) Not adequate data supporting diagnosis and/or 2) the treatment is not within the standard of care for Lyme disease

Treatment with IV’s for Lyme disease is not within standard of care

Length of treatment is not standard of care

Antibiotic used is not standard of care

Supplements are not within standard of care

More information on this article
Also suggested is to watch the Under Our Skin trailer or visit their blog available on links