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!

Good Lyme Disease update

A Few Good Days!

Just a little update. I have had a great three days! I felt sick on Christmas day and very dizzy from the incense in church but once I was out of there and got some air and food I felt much better! I was able to clean the entire house from ceiling to floor and still feel great!!! I have been super itchy which usually means I am pretty toxic so need to detox a bit more, but other than that it hasn't been effecting me much. I even got 11 hours of sleep one night!! I got my bicillin injection today so we will see if that effect me tomorrow but so far so good! SO nice to feel good!

A Few Good Days!

Just a little update. I have had a great three days! I felt sick on Christmas day and very dizzy from the incense in church but once I was out of there and got some air and food I felt much better! I was able to clean the entire house from ceiling to floor and still feel great!!! I got my bicillin injection today so we will see if that effect me tomorrow but so far so good! SO nice to feel good!

Bicillin Injection #7

Had my 7th injection today. The needle went right into a vein which can be really dangerous. If the nurse were to actually inject the bicillin into the vein, it could kill me. This is why when the needle is put into the skin they aspirate the syringe to see if blood comes into it. If so they know they have hit vein and need to stop. Thankfully she is very educated and a great nurse. So, she took it out right away and had me put pressure on it while she got the blood out of the syringe and put a new needle on. Second time we were clear and good to go. So today I got poked two times and have two battle wounds but glad it wasn't worse! Onto my 8th injection on Thursday!

Bicillin Injections

Icing before the injection

What it looks like. It's a thick paste

After shot

Walking the halls afterwards

I am finally filling you in on my bicillin injections! I think I am up to 5 injections now. I get them twice a week. The process started out drama filled.

My out of town doc wanted to me start the injections after I had been on my new oral drugs for a while, so I called my local clinic and scheduled the injections. Went in as scheduled and they refused to give them to me. Said out of town doc and local doc where not on the same page. Local doc was not aware we were actually going through with the injections and was not aware I was coming in that day. She was supposed to be informed by the receptionist and by the out of town clinic and was not. My chart also stated I was allergic to penicillin, which is in bicillin injections. So I contacted out of town clinic and local clinic to make sure we were all on the same page. Out of town clinic ok'd the injections but local clinic wasn't sure it was a safe idea per the allergy scare. I had taken amoxicillin a long time ago for acne and puked my guts out violently and quickly after taking the meds. Which is what cased the red flag. Like the nurse stated, it probably wasn't technically allergic reaction, but do we want to find out when you are on the table with bicillin being injected into your body which sticks around for a few days and then your throat closes up and we have to jab an epipen into your leg? Mmm, no thanks!

So onto the process to find out if I was allergic. I had to call my old peds clinic from 1oo years ago to see if they had any records from when I was little, of course not, they are destroyed after 10 years of becoming 18. Called the dermatology office and they couldn't verify if that was an allergic reaction or not but the nurse said she thinks it was. I reported back my findings to both of my clinics. Out of town clinic said the only way to be sure was to get a skin allergy test. So I called the allergy clinic to schedule a test. Of course I couldn't get in right away. In the mean time, my mom had taken off work to come with for my first injection in case I had a reaction. Well that went to crap and she wasted one sick day. Then the second time around was coming up and that's when I found out I couldn't get the allergy test right away. And, yet again, my mom had taken off work to come with me for the second try. I didn't want her to waste another day since she is a teacher and its a pain to miss days. I called my out of town doc and explained the situation. Doc there said he thought it would be fine and got in contact with local clinic. At this point three docs all had to be on board and the nurse that would be giving me the injections. They finally all ok'd it and I was good to go to get my first injection before the allergy testing. By this point I was scared to death I was going to have a reaction and they were going to have to jab an epipen into my leg and call an ambulance. They decided it was best to give me a half dose just in case. Thank god things went smoothly and it has been smooth sailing since. Phew, what a pain in the butt!!

So right now I have a nurse injecting one shot two times a week in each butt cheek! My daughter is oh so lucky and gets to come watch each week! Oh course at home see has to reenact it and I get more "shots" at home too! My little doctor! Last week was the first week it started to build up and I was getting nice "goose eggs" in the rear. They are solid and painful! I am thankful I get a week between each shot on each side or it would be really painful! Most of the time I don't even feel the needle go in or the bicillin until we are about to the half way point. Then it starts to burn a little or sting but if it's bad the nurse slows down which helps a lot. I am normally pretty numb and iced up which I think is a big help! Then we walk the halls for 10 minutes to help the meds move around and not gather in a lump and we are good to go.

As of now, per my doc, I will be getting bicillin injections twice a week for a minimum of four months. I have no idea how we will pull that off financially though. That will be in the next post!

I Am Back and Starting New Treatment!

My treatment and improvement has been at a standstill and at a decline for a few months now. So my doc and I discussed it and decided it was best for me to fly out of state to go see one of the best lyme doc's out there. It was a lot of planning for my daughter, my daycare, and traveling, paperwork, not to mention the cost(ouch). But at this point, I don't care what I need to do, I just want to be healthy again! So my hubby and I flew out to see what we could find out!

The new lyme doc was great! He was so kind, patient and funny. He spent two hours going over everything and explaining a lot of things to us. I was glad my hubby was there to learn also. Right now I have been treating Lyme and the co-infection Babesia. He has no doubt in his mind that I also have the co-infection Bartonella. I have been wondering for a while if I also had that one. I seem to fit the profile and it would make sense if I am not getting better that there is something else in my body that needs to be treated. He also did muscle testing which was really interesting since I have never had it done before. I also thought it was a crock and my husband is pretty hard to convince of things like that being accurate. As far as how my body reacted to the testing, it seemed pretty accurate to me. It was pretty cool to try it. That test also proved that I have a large amount of bartonella in my body to attack. SO-the plan is to start 4 new drugs and start Bicillin shots also. From what I have heard they are very painful, but again, I don't care what it takes anymore! If I have to be hooked up to a million machines, take 100 pills a day, and stand on my head, then so be it! ;-) I just took my first dose of my new meds so hope I don't herx too badly. I like how my new doc phrased it-"You have 3 big bears in your body and when you go to kill 3 big bears you don't bring a BB gun, you bring out the big guns to take them down. That's what we need to do now, we need to bring out the big guns and kill those bears." That made sense to me and it is time to KILL the 3 BIG BEARS! I have had enough!