First FAR Infrared Sauna treatment

I went in for my first Infrared treatment tonight. I have never sweat so much in my entire life!! It was a 30 minute session, the lady said try to make it 20 to get the full benefit. I had to open the door a few times to get air but over all it wasnt bad. I hate saunas so I think I did well and this didnt feel like a normal sauna. I hope to go once a week since its supposed to be part of my treatment plan. This should help kick the lymes ass! I just hope tomorrow I feel as good as I do now. Hope the bugs arent too pissed at me for trying to kill them off!!

Testing your baby for Lyme

This is a big topic for all the lyme people out there that want to have a baby and there isnt much info on the subject. I got this information from The Lyme Pregnancy Journal http://lymepregnancy.blogspot.com/. Thanks for sharing Sara! Feel free to read and pass along to anyone debating a pregnancy that has Lyme.


So you've devoted the past nine months to making sure you do everything in your power to keep your baby Lyme free. Safe antibiotics throughout the pregnancy, lots of vitamins and approved supplements, extra rest, but mostly prayers and crossed fingers because you know there's still so much unknown about the disease, so all you can do is hope for the best.

I'm not one to offer a strong opinion here, as I'm aware that everyone's Lyme journey is different, but I will break my rule and urge you to do one thing: Test that little babe as soon as he or she comes out. Even if the tests aren't always accurate, there's a chance you might catch those little buggers before Lyme takes hold for the long run. You've got nothing to lose but some money, and it will cost you a hell of a lot more to treat than it will to prevent.

Prior to last week, I had no idea about where to go or what to do in terms of testing once the baby is actually born.

As usual, number one thing to do is make sure all of your doctors are communicating about your progress and treatment course (even if communicating means you personally deliver updated information regarding your status and charts).

It took a little bit of going back and forth between OBGYN and LLMD, but I came across the following information
(Keep in mind, there are probably a bunch of different ways to handle testing, and your doc might offer something different. Please share if that's the case. This is just one option):

IGeneX, the same super-awesome lab that does all of our adult Lyme testing out in CA, also offers cord blood testing for infants. It's not something I've seen on the main site, but when I contacted customer service via email, they promptly responded and gave me the following information:

* The blood testing they do comes from the cord blood and is collected painlessly and immediately after birth

*You can request to have a test kit sent to your house (no doctor order necessary--you can do it yourself) by emailing customer service or calling them

*You'll want to order the test kit a bit early (maybe a month or so? You never know if junior is going to show up unexpectedly)

*For reference, the test number to request is #477

*There is no immediate charge. They will send the test directly to your house. You will enter your credit card number on the form that goes along with the blood sample to be sent in, and you'll be charged once Igenex receives the sample

*The cost of the test is $235 (A hell of a lot less than what I expected/compared to adult testing, so I'm wondering if it's not as extensive as other tests. Sorry, don't have any info about that yet.)

*Whomever delivers your baby will know in advance (have this conversation earlier than later!) to collect the cord blood in your kit

*I'm not exactly sure how blood-sending works. Common sense tells me you can't legally leave the hospital with vials of blood, so I'm assuming the hospital staff will send it out to IGeneX. Again, make sure your delivering doctor knows this in advance

*Results are sent to your home. It's up to you to report the findings back to your LLMD

*If there aren't any spirochetes found in the cord blood, chances are, the antibiotics worked! If they do find traces, obviously, whatever goes through that cord goes to baby. I hope none of us have to experience that, but if it happens, it's not necessarily the nasty, lingering, chronic Lyme that we have. My LLMD said that if it's caught early like this, we'd just put our little guy on a baby dose of antibiotics

There's always the possibility that the baby will test negative but will display Lyme symptoms later on down the road (my LLMD recommends testing the baby again a few months after birth, just to be safe), but let's stay positive for the time being.

It's good that we're not in the dark about our own disease, and we know what to look for. As you probably know already, some symptoms can be sneaky, and a two-year-old isn't going to be able to say, "Mommy, I have vertigo, fifth cranial nerve swelling, and some neuropathy!" In addition, keep an eye out for unexplained pain, developmental and speech delays, signs of Autism, and neurological symptoms.

Again, I do have faith that since we know the drill and we know what we're treating, we won't have to become the horror stories we sometimes read about. It's all about being proactive and staying educated.

I will post more info on testing as I get it. In the meantime, take care, and keep cool (it was over 100 degrees here today! No one wants a cooked baby. Or a melted mommy!)

PICC Line

There are many different ways to treat Lyme. Right now I am on pills and drops but some Lymies out there are on IV's and have a picc line in their arm. I have a lyme friend that said I could post her pics on here to show what the picc line looks like so others can be informed. Here are a couple of the pictures and the description of what you are looking at...



Normally I would have a Biopatch around the actual port site, but I saw a different nurse this week and she thought the biopatch may be keeping moisture in and causing the blisters, so, I'm biopatchless.




The only time it is EVER bare like this is a less than 5 minute period on Wednesdays when the bandage is changed.




These are the bags of syringes that I have. They are different. Yellow caps are Heparin and keep the line from clotting, and the white are a saline solution to flush the line clean.





This is the medicine that goes into my PICC line. The syringes on the side are 2 different types. The white cap is a saline solution and is used to flush the catheter both before the medication is administered and after. The syringe with the yellow cap is Heparin. This is a blood thinner and is always used very last. This keeps blood from clotting where the tube meets my blood stream.

The large "bulb" is my antibiotic. It's called Ceftriaxone, and is generic for Rocephin. I infuse that into my PICC once a day, every day around 8:15pm. The infusion takes 30 minutes. The bulb is pressurized, so I hook it up to my PICC and it empties itself. Once that is finished, you flush and use the Heparin.





This was the day it was inserted. I no longer use such large bandages, but the entire set-up is exactly the same :)





This is a graph showing the PICC line placement.




I get a week's worth of medication each Wednesday.


The bandage actually has a clear film that covers the entire section where the tubing actually comes out of my arm, so that's why you can see into it.



This is my PICC (Peripherally Inserted Central Catheter). The small purple tube that you can see stretching from the white area to the blue circle (a Biopatch) is actually inserted into my vein, and fed up through to a main return valve of my heart.

There was an incision and the Biopatch covers up the actual port where the tube comes out of my arm.







I wear this net over my PICC for a few different reasons. Mainly, to keep the tubing that hangs out from catching on things. I also wear the netting to prevent the bandages from getting dirtier than they do.

The effects of food

I wasnt very good about my diet this weekend and noticed the side effects more. I have been noticing that when I eat the foods I am not supposed to I get more foggy, moody, anxiety and my brain races. Last night I couldnt fall asleep because my brain was going 100 miles and hour. Its so strange how much food can effect your body and the healing process. Back to the very strict routine, I dont want to keep setting myself backwards!!

My weekly routine

Every week I sit down and divide all my meds up and put them in a pill organizer for the week. There are four slots for each day. And yes, I use my daughters stickers to mark the tops of some so I can keep them straight haha! I will never complain again about having to take a pill once in a while, this many gets old!

Hard to except

Its hard to except that I have this disease and I get angry about life. I have my days and weeks that are up and down, some good some bad. I try to focus on the good and look forward from there but its hard when there are still so many bad days mixed in there. I am angry that on top my my daughters life long disorder MCAD that I now have to deal with having a disease that is attacking me. I get angry that I have to change my diet when we already changed our diet to what my daughter needed for her disorder. Now mine is so much more restricted than it was before. It is especially annoying when eating out or going to a party. I get angry that I cant go to one store with out feeling like crap, or driving very far with out feeling the same way. I get angry that everyone else is moving forward in their life-having babies, moving into bigger houses, getting newer or bigger vehicles, going on vacations. We cant do any of that, instead we are are trying to sell things to make ends meet from the piling medical bills that are so overwhelming. My medical treaments, doctors visits that arent covered by insurance, my daughters hospital stays, it never ends. My husband has to pick up more shifts from his second job, he shouldnt have to work a second job let alone have to pick up more shifts. I am angry that there really may be no end to my Lyme, I could have cronic lyme for life. I hope there is an end but I loose hope when the majority of people that I have met or talked to have had it and been treated for YEARS. Its not fair! I am angry and scared that I may have passed it along to my daughter and now she will have to be tested. Most of all, I am angry that we may never have another baby. This isnt ok with me, I have always wanted more than one child and I want my daughter to have a sibling. But I also know the odds of passing along Lyme to my next child and dont know if I could live with myself going into it knowing and possibly passing it along to an innocent baby that had no choice. Its frustrating that my days are scheduled around my meds. I have to eat with some, take some on an empty stomach and take meds 5 times a day. I have to wait 1 1/2hrs after I eat or 1/2 hour before I eat to take some of them. I feel like my days and life are scheduled around this stupid disease and its hard to see past that sometimes. I am just angry about it and needed to vent. Thanks for letting me get it out!

Lyme bugs crave sugar

I used to crave sugar SO bad before my diagnoses. I never used to be like this but it was gradually getting worse since the birth of my daughter and the more my health failed. Now I know why, the Lyme bugs love that crap and feed on it. I gave into my sugar craving today and I am sure I will be paying for it tomorrow. Very bad choice but over all I have been very strict with my diet. I am only human right?! Here is an article I found-


12/03/08 14:29 Filed in: Lyme Disease Diet|Lyme Disease Bacteria
Lyme bugs love sugar. However, Lyme symptoms may flare if you help yourself to the enticing cookie buffet. Cravings for certain foods, such as holiday desserts, are emotional, not physical. A plate of sugar cookies and a steaming mug of hot cocoa goes so perfectly with gray skies and long winter nights, right? Lyme disease, and any chronic disease, re-educates us about our cravings and appetites. Sugar makes the bugs happy and carbohydrates can increase inflammation. Lyme forces us to reconsider what makes us truly feel good. What foods add value to your healing? What foods subtract from it?

Sometimes we think we're choosing a healthy substitute when we're actually only making the problem worse. Tod Thoring, ND, recommends that you work with not just one doctor on your healing journey, but several. If possible, consider consulting a Lyme-literate nutritionist or naturopath.

Jean Reist, RN, who treats Lyme patients at a Pennsylvania clinic, told me that one of her patients decided he'd quit sugar, although he was addicted to Coca-cola. She'd informed him that his daily habit would keep him from healing, and that was enough to help him quit cold turkey. He got well enough to return to work, so he went back to his construction job. However, he missed his daily fix, so he picked up some Diet Coke and swigged it down.

Within days, his energy was totally drained and he was feeling sick again -- too sick to go back to work. His Lyme symptoms returned. He dragged himself back to Jean's office and told her about switching to Diet Coke. She told him that although it didn't contain sugar, it contained an artificial sweetener called aspartame, which is also sold as NutraSweet. The effects of substitute were even worse than regular sugar.

If strings of Christmas lights and gently falling snow make you want to bake a pumpkin pie, think about the Lyme bugs. They want more sugar -- don't let them have it. Although the herbal sugar substitute stevia is not sanctioned by the FDA as an artificial sweetener, many people use it in place of sugar. Try some in a cup of hot green tea, with a thin slice of fresh ginger. Ginger has long been promoted by herbalists for its overall soothing and warming effects. It may not replace the hot chocolate, but it will help take the chill off the cold winter nights.