The Unpredictablity of Lyme

Yesterday after only sleeping 3 hours the night before (leg cramps that I get from time to time) I had a burst of energy and decided to do a load of laundry, since we need clean underwear, and a trip to the nearby grocery store. I thought I wasn't doing too much and pacing myself, but waking up this morning in pain tells me otherwise... How frustrating! I really do try to pace myself, but my "pace" right now is slower than a slug, it sure is testing my patience and humility. I hate Lyme! It royally sucks! Just had to vent that... Now I feel better psychologically at least today. We will see how I do physically, looks like pain meds and ice are in my future today.

Deer, family Reunion, and I'm still alive... Sort of

This past weekend after my picc line procedure and dr appt Thursday evening for a dressing change, my family got on the road late and started driving towards our family reunion in Utah. I gave myself a dose of glutathione just before leaving, in hopes that it would help me survive the trip. It sure was nice not having to find a vein and give myself an IV. As annoying and sore as a picc line can be, it's very convenient when needed. 

Within the first few hours of our trip we hit a deer on the freeway going about 70 mph, it hit our right front side of the van. My father inlaw kept driving until a little later when we pulled into a well lit gas station where we found the damage to be worse than expected, and the radiator dead. So we were stuck for the night. We slept a few hours in a motel nearby and then by a miracle we were able to rent an SUV with a trailer hitch (we were hauling a trailer) and were able to continue on our journey. It was a VERY long car ride and I took alot of pain and migraine meds to survive. But grateful to my parents for helping get my son and I (and our things) down to Utah to meet up withy husband and spend the weekend with grandparents, aunts, uncles, and cousins. I admit I put on my "fake" face too much all weekend, and in some ways I see it now as being prideful and selfish, not wanting anyone to see me sick or have to help me. I'm still learning how to accept help, even after all these years of chronic illness, you think I'd learned by now! My husband reminded me that when I am trying to do everything and not let anyone help, that its really hard on him and others in the family who help. Humility is definitely a lifelong lesson for me, right alongside patience. 

So as of now, I am home in my own bed. As soon as I hit my pillow, my body let go and now I feel like I've been hit by a Mack truck, muscles are stiff, joints are burning and sore and I feel like I have a hangover from all the large amounts of big medications I took all weekend to survive. I am on my own this week with my son for the first time in months and My sweet husband has arranged help so I can rest, which I'm extremely grateful for, considering I slept most of today and I know tomorrow and Wednesday will be similar for sure. 

During the reunion my picc line dressing was in the crease of my arm and so irritating, so I asked my sister and mom (both nurses) to change my dressing and reposition it higher on my arm, all while giving my husband a big lesson on how to change sterile dressings, etc. just I'm the 2 days I had my picc dressing into elbow crease, my skin started to break down! 

When I saw that, I felt justified for feeling so sore, bit it was also surprising. My sister did a really nice job and its out of my elbow and already way less irritating, thank you Ran! 

I also have been experimenting with crocheting a cover for my arm. So far, it's either, too big, too short, or the holes are too big... 

I may break down and buy a nice little cover off etsy so I don't have to make it myself. I'm totally into making everything easy right now. Till next time!

Picc Line... A Definite First For Me

Well I had a PICC line put in today so I don't have to give myself anymore IVs. It was an interesting procedure (my medical side always piques with new procedures I haven't seen or done). Thankfully, the staff was very cool about showing me and telling everything they were doing. I got to see what veins and arteries look like on an ultrasound and how to decipher between the two, I watched as they cleaned and cleaned and draped my arm to keep everything clean and sterile. The doctor gave me a shot of lidocaine and then made a very small incision in my biceps area were he then proceeded to feed a wire into the vein (this felt weird and a little painful in the chest), all while looking at it through X-ray to make sure placement was correct. Then he fed the catheter, which is made of silicone through the wire and then pulled the wire out... And Ta Da! All done. Then there was alot of clean up, sterile dressings, and then I got changed. But while I changed I started bleeding more than usual, so I had to go back and have a second dressing change. I will also be meeting up with my Dr tonight in Seattle where he will change my dressing again and teach me and family how to properly clean and keep the area clean and dry. Then the plan for us is to head home to Idaho, so a long road trip ahead once again... I'm resting today, my arm is sore and irritated, but I'm grateful it's not worse. I can handle sore...

(The blue smurf look is just from their cleaning prep, I haven't washed it off yet)

A little bleeding, but hopefully that will stop soon. Looking forward to not having  to give myself anymore IVs. Just hope it stays clean and free from infection or blood clots.

PICC Line

Life with Lyme sure can be whiplash. I saw my Dr last week and he was happy with my progress, but we also discussed my concerns and problems I was continuing to have. So, many meds and supplements were changed. It's really embarrassing to go to the pharmacy and pick up 7 prescriptions in one day, after picking up 6 prescriptions less than a week before. Of course, one of the changes was an antibiotic, and we are having to slowly start from scratch and increase the dose, which is causing herxheimer (die off) reactions. They are mild, but still no fun. I ran out of glutathione this last week (and waiting for it to arrive in the mail) and so it made things even worse to the point that I went back in to the office today to have them give me IV glut in office because I was feeling so terrible. My dr saw me in the waiting room and took one look at me seeing how much I had changed (good to bad) in just a week. We talked about how I can only go a few days without IV glutathione and that it's getting harder and harder to stick myself, and that my veins are not healing fast enough. We discussed how the body is supposed to naturally produce glutathione on it's own, but some people have a mutated gene, last week I had a DNA analysis to see if I have the mutated gene that would be keeping my body from producing glutathione on its own, we are still awaiting results. In the meantime, I was put on a supplement called Methyl-gaurd that is supposed to help my body produce Glutathione. I told him I had increased the dose over the week and hadn't seen any improvement. It was then that he decided a picc line would be the next best option for me. It will make giving myself glutathione easier, and if we eventually go to IV antibiotics, there will already be a line in place. I politely told him I was leaving for Idaho on thursday and he muttered under his breath "shit", and then nicely made phone calls to try to get me into a the radiology clinic as fast as possible. So I have an appointment on thursday to have a picc line placed in my arm before I leave town. I'm nervous, I don't know what to expect and I worry about keeping it clean and keeping it from infection. But I know it's for the best right now. I just hope I can get the procedure done, a dr appointment in the evening to have a dressing change and learn from my doctor how to properly change the dressing site, and then leave for our road trip and ride all night back to Idaho and not have too much repercussion from the trip or the procedure. I just keep reminding myself to be strong, keep fighting, I can do this! I have to do this for my little family because they need me! and I love them more than anything in this world!

10 Scary Facts About Lyme Disease

1. Only 1 in 2 patients develop the classic bull's eye rash.

This means you have a 50% chance of not getting diagnosed correctly after a tick bite. As many as 64% patients with Lyme Disease do not remember being bit by a tick. 

2. Standard blood testing for Lyme has an estimated sensitivity of less than 50%.

This means diagnosis through current antibody serology is as accurate as a coin flip. A bill was passed in Virginia which requires doctors to tell patients a negative result does not mean you do not have Lyme Disease. 

3. Most ticks carry multiple disease causing pathogens called co-infections. 

A tick can host up to 30 different pathogens. Species that are not tested by current CDC guidelines are Babesia, Bartonella, Mycoplasma, Ehrlichia/Anaplasma and more. Many of these co-infections do not respond to standard Lyme treatment (Doxycycline), Yikes! 

4. The average Lyme patient takes 2-3 years to get diagnosed correctly. 

That's a really long time for Lyme Disease pathogens to get comfortable in your body! Late stage treatment increases the risk of treatment failure and Lyme Disease becoming chronic. 

5. Lyme Disease can cause over 300 different symptoms. 

Lyme Disease pathogens can affect multiple body systems and produce a range of symptoms. Symptoms so diverse that lyme patients often get wrongly diagnosed. 

6. A tick nymph can be smaller than the period at the end of this sentence. 

This means it's very easy to miss a tick bite if you don't inspect your body on a daily basis! Be alert, an estimated 25% of all ticks carry Lyme Disease. If you spot a tick, remove it as soon as possible. This reduces (but doesn't negate) the odds of contracting Lyme Disease. 

7. Lyme Disease is more epidemic than Aids, West Nile and Avian Flu combined. 

Lyme Disease is a global epidemic. The CDC estimates that there are nearly 325,000 new cases each year in the USA alone. Yet, this is only a faction of the actual numbers, due to inaccurate tests and underreporting. Each year, thousands go undiagnosed or misdiagnosed, often told symptoms are all in their head.

8. Lyme Disease bacterium can survive short-term antibiotic treatment.

The current international treatment guide-lines recommend a 2-4 weeks course of oral antibiotics. This treatment however, does not guarantee eradication of all Lyme Disease pathogens. New studies show that Lyme Disease pathogens are highly adapted: They evade destruction by antibiotics and subvert the adaptive immune system. 

Large scale patient surveys show that short term treatment fails for over 90% of patients with Chronic Lyme Disease. 

9. There are 12 strains of Borrelia that are known to cause Lyme Disease, standard serology only test for one. 

The agent known to cause Lyme Disease is called Borrelia. This bacterium has many strains causing different symptoms. Current standard blood testing only looks for a single laboratory strain! This means you have a big chance of going undiagnosed with a less known strain, like the newly discovered Borrelia Miyamotoi.

10. Lyme Disease transmission might not be limited to tick bites. 

In addition to ticks, Lyme Disease may be carried and transmitted by fleas, mosquitos, and mites. Lyme Disease is not exclusively vector-borne. New theories suggests transmission could take place through the placenta, by contact with breast milk, blood, raw food, and saliva. 

Thank you to my friend Jenna over at http://livininthelymelight.blogspot.com/2013/07/10-scary-facts-about-lyme-disease.html for sharing. I am getting so big on awareness, I want to do all I can to get information out to all. 

What I'm Like without Glutithione... Meltdown

I didn't realize I was down to my last dose of glutathione, and it takes about a week turn around or more for my Dr to send the prescription to the special pharmacy who then sends it by mail. Well I am on about a week of no glut... The longest I've ever gone, and it's not pretty. One good thing out of it all is knowing that my body needs IV glutathione every 4 days, and then I'm usually doing pretty good afterwards. Without it, I lose my balance, trip over everything including my own feet, drop everything (almost as if my brain doesn't quite tell my hand to grip the object hard enough), I become very shaky, nauseated, sometimes headaches and migraines, and I get very emotional. I call it my "meltdown". I've realized when it happens that I over react about everything and I'm overly sensitive and emotional about everything. So I have to say to myself "is this my thoughts and feelings, or is this the Lyme speaking?". 

So the other day I was on the verge of a meltdown and usually I want to go for a drive when this happens to be alone, so I got in the car, turned on my music and drove. I was feeling a little more put together a little later, until I noticed a Motorcycle Officer with his lights on and I passed an apartment complex full of multiple ambulances, fire truck and police...a firefighter walking by the open back of an ambulance with a patient in the back... And then I lost it, I just started to cry. I feel like never again will I be apart of the family/brotherhood that I had worked so hard and loved being apart of with all my heart and soul. I keep thinking it will get easier with time to let my dream go, and maybe it will. But for now it feels like every time I drive by a fire truck, an ambulance, drive past a station, see medics, EMTs, and fire personnel, or watch movies about fire/ems, it's like ripping off a bandage and ripping a piece of my heart out every time. It's still a very fresh painful wound no matter how hard I try to hide it. That's my rant for the day... I can really tell my body needs glut because I feel terrible physically and feel like crying about everything. 

Energy

I'm back in Washington for a few weeks. The drive was long and hard on my body as usual. It took me about 3 days for my muscles and joints to not be in so much pain and so stiff. On the plus side though, I continue to still have more energy and I'm continuing to be able to do more each day. I suprise myself and my family with what I'm able to handle. I still have a long way to go in order to get back to becoming a full time mother and wife, and constantly have to remind myself not to overdue things, but for the first time in many months I can recognize improvements in myself, and that's huge for me! I continue to have to give myself IVs twice a week, be in and out of a wheelchair (though less and less), and take handfuls of pills a day along with vitamin shakes to keep me going, and trying my best to stick to a good food diet. But in the mean time, I am enjoying the small moments of happiness such as doing the laundry, doing a load of dishes for the first time in 5 months, puttting ethan in the bath, putting him to bed, going grocery shopping and not always having to use the zippy carts, and being able to walk up and down stairs more often without being out of breath so quickly. Every little bit counts to me and I pray for continued improve.