ER Visit

I recently when on a higher dose of two drugs which were causing too many side effects so I had to take a mini drug vacation. I was still herxing a lot and on day 5 of being off drugs I started having a lot of chest pain and other random stuff. Dizzy, random pain, pukey, numbness, blurry vision, head pain, etc. Really nothing out of the ordinary but was scary because of the chest pain and the location of the numbness. I wasn't sure if I should go get checked out or not. I remembered that my out of state doc has an on call doc at all times so called at 10:30pm. I actually talked to my doc and he reassured me that it was just herxing and thought the chest pain was my muscles contracting. And for whatever reason I was still herxing like crazy even after being off my meds for a while. I felt better after talking to him and went to bed. The next morning I woke up feeling great and then started to feel sick again. It was gradually getting worse and the chest pain was getting unbearable. I has numbness in my left arm, the left side of my face, and the left side of my neck. The pain was also traveling to my shoulders and my back hurt where my heart is located. I couldn't take it anymore and took myself to the ER along with my 5 yr old. They did an EKG, lab work, Xray and I was hooked up to monitors for about 6 hours. My poor kid was such a trooper! I was glad to be hooked up to monitors since I was having such bad heart pain. Everything came back normal,thankfully! The ER doc wants me to do a stress test at the clinic next week just to make sure everything is ok. I hate going in when you don't know if it's herxing or something really happening, you feel like a nerd! But I figure when it comes to your heart, you better make sure! Currently I am back on drugs and slowly building back up again. Hoping I can get back to a normal level and not herx like crazy!!!

Drained

I haven't been THIS tired in a long time. Friday I took a 5 hour nap, last night I got 11 hours of sleep and then I took a 4 hour nap today. That's a lot of sleep!!!! My body must be working hard right now! Hoping for a good week!!

"Persistent Infection With Lyme Disease" Dr Phil

For those of you that missed the episode on Dr. Phil. This is huge that a popular show on daytime TV did a show on Lyme!!!! The more knowledge we can get out there the better! I thought they did a great job, only wish they did a longer show!

Only With Lyme Disease

Only with a weird, crazy disease like Lyme can you have one day where you feel so sick and feel like you are slowly dying and wish you would just die in your sleep. And the next day you feel amazing and can get a ton done. And then the next- herxing so badly you feel horrible. It's a crazy ride. I hope tomorrow is the better day again. Today has been really hard, I feel terrible, So tired, weak, sick like I have the flu, and really, really toxic which tends to effect my brain functioning. Which for me= a massive amount of depression that is hard to handle. The brain part of it is the hardest part to handle a lot of times. Lets hope some detoxing helps so tomorrow is a more clear day. I just need the reminder that things can always be worse than they currently feel, you need to struggle to make progress!

Worn Out But Still Pushing Forward

I haven't been blogging much these days. I am now back on a normal amount of treatments and a schedule. I am on a higher dose of drugs which is making me sooooo tired, I guess my body is working extra hard killing things off. I am also on injections every other week which I am happy about. Give me a little break in between getting them. Hopefully I can slowly get off of them completely and be able to function with just my oral meds. Nothing too exciting going on here. Just unpacking still and getting ready to see my out of town doc. I fly out in a month!!! I am excited to see what has to say and show him how I have been doing!! One thing I do need to push myself on and work on is detoxing. I have been bad and can tell, need to get that yucky die off out of my body!! Time to dig out my sauna again and get back into sweating my butt off!!

Lots Going On

There has been a lot going on over here. I found out on my phone appointment with my out of town doc I was ODing on many drugs and didn't know it. The communication between doctors and patients really needs to improve. My local doc types everything up and mails me a summary so we are both sure we are on the same page after an appointment. Out of town doc does not and I wish he did. There has been a couple of times I haven't been on the correct schedule because of this and it's dangerous. We were both surprised I didn't have more negative effects, the combo I was on was very dangerous. Needless to say my local doc had a nice chat with out of town doc. This should NOT be happening when you are working with someone that is sick and has brain fog. We can't remember what the rules were for a certain drug we took 5 months ago when we re-take it currently. You need to tell us what we can can cannot be on. So after that was figured out I had to go off all drugs for a bit, then back on the one very powerful drug, then off everything for another week. I am finally back on track and this last Monday started a higher dose of drugs and Bicillin injections this week. I forgot how sore and tired they make you sometimes! I am worn out! I have been herxing this week but it's nice to be back on track and kicking the bugs butt!! My new injection schedule will be two shots every other week and start to wean off of them. I will keep this schedule until May when I fly out to see my out of town doc in person to discus my progress and what the future holds for me. I am still getting stronger and making progress. My new exciting news is that I start physical therapy next week. I can't wait to get some muscle tone back!!!!!!

We also moved out of our house and in with family. It's a big adjustment, I am not used to having to go by someone else's rules but it's working. We still have a lot of organizing to do but very glad we have someone to take us in, in such a difficult time financially. That's it for now, keep fighting the good fight!

PTSD/EMDR

Many people with Lyme Disease or the loved ones of those dealing with Lyme have PTSD, Post-traumatic stress disorder. So what is PTSD--Post-traumatic stress disorder, is a serious condition that can develop after a person has experienced or witnessed a traumatic or terrifying event in which serious physical harm occurred or was threatened. PTSD is a lasting consequence of traumatic ordeals that cause intense fear, helplessness, or horror, such as a sexual or physical assault, the unexpected death of a loved one, an accident, war, or natural disaster.

It makes sense, there is so much trauma around the disease that some people can't avoid it. Can you blame the loved ones? They deal with a lot, it's hard to watch. Some Lymies deal with being bed bound, seizures, passing out, bad allergy reactions, loosing the ability to walk, stop breathing, loosing the ability to drive, rage, fighting with friends and family members and not be able to control their rage, lash out physically and verbally, being in extreme pain, run away, suicide attempts, etc, etc, etc. The loved ones watching this feel helpless and don't know how to help. They can see how miserable it is for the lymie but they can't feel it for themselves and aren't sure how to help. It's traumatic for them to deal with and watch which can cause them to have PTSD.

How can someone with PTSD get help to deal with it all? Well there are many ways but one that may work is EMDR. What is EMDR--EMDR--Eye Movement Desensitization and Reprocessing involves recalling a stressful past event and “reprogramming” the memory in the light of a positive, self-chosen belief, while using rapid eye movements to facilitate the process. Theories as to why EMDR works are still evolving, but many people have found EMDR to be extremely beneficial. EMDR incorporates elements of cognitive-behavioral therapy with bilateral eye movements or other forms of rhythmic, leftright stimulation. One of the key elements of EMDR is “dual stimulation.” During treatment, you are asked to think or talk about memories, triggers, and painful emotions while simultaneously focusing on your therapist’s moving finger or another form of bilateral stimuli.

I have a couple childhood trauma's that have caused PTSD my entire life. I am just now dealing with them and am using EMDR. I didn't realize how much they effected my life until adulthood. I was shocked at how well it's working for me and wanted to make a point to share information with people that might benefit from it. My childhood trauma has nothing to do with Lyme Disease but I do know many people that have PTSD from lyme disease and other chronic problems. Maybe EMDR might help you? In my sessions my therapist uses tapping on my knees, in the past I have also used the tapper machine but for me the tapping works better. I have worked through one trauma and feel so much better about it, it really is amazing how well it works! It helps to release it from your brain and body and you learn how to get past it so it doesn't control your life anymore. It's an amazing feeling to be free from it. I am currently working through the other trauma and getting much better with it. It is not easy work, you have to work hard to get through it but it is worth your freedom in the end. Some people need many sessions and some people only need a couple. It's different for everyone and different depending on how traumatic the event was. If you are suffering maybe you can give it a try or pass the information along to someone you know that may benefit from it!