Appointment Update

Saw my doc today. Everything is looking good for the most part and I seem to be reacting well to treatment. Its been two months now! We are still holding off on sauna treatments since I had such a bad reaction to so much die off. Its just too much for me to handle right now. My joints are very sore and painful right now but that is due to not following my diet this week. So I need to get back on schedule with eating, catch up on sleep and try to get myself back to being well balanced. Next month we are going to change things up a bit and start some different treatments. Since I am reacting well to the Lyme treatment we are going to start treating the co-infections that are so common with Lyme Disease. Lets hope I react well to that and it doesnt kick my butt! Right now I feel good besides the joint pain and feeling tired. My hair loss has slowed down a ton, I havent itched all week, and I can sleep better at night! The lemon water also seems to be helping! Yay!!

Lemon Water

My doc wants to me drink lemon water daily as it helps support the liver and detox process. Here are some other benefits of drinking lemon water--Top 10 Health Benefits of Lemon Water


Many people often love the tarty flavor of lemon juice in their dishes. But have you ever wondered that you can put this lemon juice to many more good uses than this? Yes! There are enormous benefits of lemon juice and water in your everyday life. You simply need to arm yourself with relevant knowledge and you would soon start valuing this amalgamation more than ever.

Lemon is an inexpensive, easily available citrus fruit, popular for its culinary and medicinal uses. It is used to prepare a variety of food recipes such as lemon cakes, lemon chicken and beverages like lemonade and lemon-flavored drinks. It is also used for garnishing. Lemon juice consists of about 5% citric acid that gives a tarty taste to lemon. Lemon is a rich source of vitamin C. It also contains vitamins like vitamin B, riboflavin and minerals like calcium, phosphorus, magnesium as well as proteins and carbohydrates. Lemon is generally consumed in the form of lemon juice or lemon water. Lemon water makes a healthy drink, especially when taken in the morning. Daily consumption of lemon water provides a number of health benefits like:

Good for stomach
Lemon can help relieve many digestion problems when mixed with hot water. These include nausea, heartburn and parasites. Due to the digestive qualities of lemon juice, symptoms of indigestion such as heartburn, bloating and belching are relieved. By drinking lemon juice regularly, the bowels are aided in eliminating waste more efficiently. Lemon acts as a blood purifier and as a cleansing agent. The intake of lemon juice can cure constipation. It is even known to help relieve hiccups when consumed as a juice. Lemon juice acts as a liver tonic and helps you digest your food by helping your liver produce more bile. It decreases the amount of phlegm produced by your body. It is also thought to help dissolve gallstones.

Excellent for Skin Care
Lemon, being a natural antiseptic medicine, can participate to cure problems related to skin. Lemon is a vitamin C rich citrus fruit that enhances your beauty, by rejuvenating skin from within and thus bringing a glow on your face. Daily consumption of lemon water can make a huge difference in the appearance of your skin. It acts as an anti-aging remedy and can remove wrinkles and blackheads. Lemon water if applied on the areas of burns can fade the scars. As lemon is a cooling agent, it reduces the burning sensation on the skin.

Aids in Dental Care
Lemon water is used in dental care also. If fresh lemon juice is applied on the areas of toothache, it can assist in getting rid of the pain. The massages of lemon juice on gums can stop gum bleeding. It gives relief from bad smell and other problems related to gums.

Cures Throat Infections
Lemon is an excellent fruit that aids in fighting problems related to throat infections, sore throat and tonsillitis as it has an antibacterial property. For sore throat, dilute one-half lemon juice with one-half water and gargle frequently.

Good for Weight Loss
One of the major health benefits of drinking lemon water is that it paves way for losing weight faster, thus acting as a great weight loss remedy. If a person takes lemon juice mixed with lukewarm water and honey, it can reduce the body weight as well.

Controls High Blood Pressure
Lemon water works wonders for people having heart problem, owing to its high potassium content. It controls high blood pressure, dizziness, nausea as well as provides relaxation to mind and body. It also reduces mental stress and depression.

Assist in curing Respiratory Disorders
Lemon water assists in curing respiratory problems, along with breathing problems and revives a person suffering from asthma.

Good for treating Rheumatism
Lemon is also a diuretic and hence lemon water can treat rheumatism and arthritis. It helps to flush out bacteria and toxins out of the body.

Reduces Fever
Lemon water can treat a person who is suffering from cold, flu or fever. It helps to break fever by increasing perspiration.

Acts as a blood purifier
The diseases like cholera or malaria can be treated with lemon water as it can act as a blood purifier.

How much should I drink?

In case you are in good health and weigh 70 kg or less, it is advisable for you to have juice of one-half of the lemon squeezed into one glass of water, twice daily. However, if you weigh more than 70 kg, juice of one whole lemon in a glass of water should be preferred. For maximum benefit, this mixture should also be taken two times a day, though you may dilute more lemon juice according to your taste if you wish.

Do not just remain oblivious to the gifts of nature such as this, for you should always try to make the most of them. So, make it a part of your daily routine to drink a glass of warm lemon water in the morning and then open your gateway to enjoy its health benefits.

Here we go again

The itching hasnt been too bad the past few days but woke up this morning and its already started. It ALWAYS starts in my feet and legs but today its started in my arms, strange! Can it really still be from the sauna a whole week later?? Anyone have an comments? I am tired of itching.

IgenX and Tick Information

Here are a couple links also-IGeneX is where my labs were sent. They are the best out there for Lyme testing and I recommend everyone getting tested to deal with them! They are who I went through for my last round of testing and finally got diagnosed.

http://igenex.com

http://www.tickinfo.com/index.htm

Testing, Ticks, and Lyme Info

I went to a support group last night and got some hand outs and a tick remover kit. Didnt know there was such a thing! I didnt feel well at all before I went but really wanted to go so pushed myself. Guess it was a bad idea. I literally felt like I was going to die when I was going to bed and prayed if I was going to die that it would be in my sleep. I felt the worst I have felt yet, was crying and made the hubby lay with me until I fell asleep. That and an ice pack on my head calmed me down enough to fall asleep. It was a horrible feeling. Enough with the herxing already, its been 6 days now. Its gotta end soon right?! It was nice to hear the other stories last night and get support from others going through it. Some people looked healthy and others looked very, very rough! Many different experiences and a lot of helpful information. I will post a pic of the tick removal kit.

Itching, heart racing, crying, shaking, numbness, tingly, Repeat...

I was going insane this morning. I itched a little before bed last night but put an ice pack on and fell asleep and was fine. Woke up this morning and all hell broke loose. I started itching uncontrollably-much, much worse than when I went to the ER last time for it. I tried the oatmeal bath, shaving my legs(the itching ALWAYS starts in my feet and legs and travels from there), lotion, the itching tabs under my tongue the doc said to try, ice. NOTHING was working! The itching was so intense my heart was racing, I couldnt control anything and broke down and started crying. It was just so unbearable I couldnt take it. I started to feel like I was hyperventilating from it and my arms and hands started to tingly, and get numb from my oxygen level being messed up. I iced again, and jumped in the oatmeal bath again. Things started to slow down a bit and wasnt so intense. A friend was on her way over because I started to feel like I was going to faint and throw up. Hubby was working and I was home alone. Right now I feel like I have an extreme case of the flu and wish it would either go away or I would throw up so I can get some relief. I dont even know what to do anymore. Any of you Lymies out there have any tips for me??? This is one bad herx and I am not a fan! I havent eaten anything I am not supposed to, I havent done anything different....maybe from the sauna this week and eating the sugar earlier in the week by accident?? I dont know, I just know its a living hell and I want OUT!!! Not sure you will be able to see how bad the itching was but I will post pics on my legs and me icing it. Maybe some of you have had the same thing??

Can you say Herx?

Short and to the point-I hate herxing, I feel like hell and I want it to stop. I feel like deaths door is knocking. I wouldnt wish this feeling on my worst enemy. I just hope it means there is a lot of lyme die off the last two days. You forgot how bad it feels to herx when there were so many good days in there! I am hoping the good days are just around the corner again.

Far Infrared Frequency Demonstration - How Far Infrared Works

A lot of people ask me why FAR Infrared Saunas are so much better for you than a normal sauna. I have a hard time explaining it and thought I would share a video a friend found! Good info!

I forgot...opps!

Honestly who forgets that they cant eat sugar!!! I have been so well trained to watch for low and fat free items for my daughter that I forget about myself sometimes. I wanted to give my daughter a treat for having to lug her all over town last night so got lemon ice since the ice cream had too much fat and got one for myself! Hello, totally loaded with sugar. Did I even think of that, nope! Now I am paying big time. I woke up this morning drowning from night sweats and now I have severe stomach cramping. The kind that hurts so bad it gives you goose bumps, hot flashes and I am pacing because the pain is unbearable. Trying to focus on breathing exercises reminds me of being in labor! Sugar is the devil!!!! I hope I remember that in the future! At least I had 3 good days this week, thats a pretty good stretch!

Lyme Stories

Here are some videos of people telling their lyme stories. On the left is an article. On the right are the 4 stories.

http://www.wcsh6.com/news/health/story.aspx?storyid=119882&catid=273

India Arie feat. Pink - I am not my hair

I thought this was funny and fitting for so many Lymies out there loosing their hair! And Pink is my girl so I had to add it to my page!!

ER Trip Today

Well today didnt start out on a good note! Ended up going to the ER. I was severely itchy, shaking, and tingly. It was soooo bad, I couldnt stand it and I was giving myself scratch marks. Its so so unbearable. Had my mom sub for the daycare and a friend brought me to the ER. I wasnt too happy with the hospital. Had to wait 2 hours before being brought back, meanwhile I was itching my skin off. Then once back there no one seems to care and acted too busy for me. The doc came in and I was starting to explain that I thought it was related to the Lyme, he didnt really want to listen. Had his own views. I said I already had a rash on both arms for a couple of weeks but were never itchy and the rash on my legs was from me itching them so hard. He didnt agree, said the rash on the arms probably caused the itching and the rash on my legs caused the itching! There was NO rash on my legs until I couldnt stop itching them. I said I thought maybe the rash on my arms were because the lyme was being pushed out. The only thing I did different in the last day was doing the infrared sauna last night. My theory is that maybe I was itching so bad because the sauna made the lyme surface more so I could fight it off and thats how its detoxing. I could be way off base but I think the itching is related to lyme either way. The doc just said well those arent deer tick bites, its not the bulls eye. Well no crap, I dont mean I just got bit your moron, I mean I am detoxing. He didnt get it. He then said he wanted me on an antibiotic. I said I am on one already. He was like oh you are, what is it. I said I gave the list of all my meds to the nurse, of course they couldnt find it and had to go on a hunt for it. Once he found it he said ok I am not going to put you on one since you are already, hmmm ya think!!! Just told ya that! I just left upset and very unhappy I wasnt being heard. He gave me some prescription for itching that I am supposed to take. Not sure I even want to fill it at this point. The medical field is so frustrating when it comes to Lyme.

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.

Its nice to feel so good today after a terrible week! I dont have much pain and I dont feel like I have the flu!! Woohoo!

I was feeling great until I ran to the store. Shopping gets me every darn time!! I cant always get around not going so just have to deal with it. Its too much movement and stimulation for my nervous system to handle! Very frustrating, I used to love shopping. Now I tread it!

Rough Lyme day today. I just cant seem to catch up from this weekend. Super drained, head hurts, eyes hurt, stomach feels off, feel like I have the flu, woke up with really painful and puffy joints. Just plain old dont feel good and want to go back to bed! At least its nice outside! Hoping for a better weekend and week next week!