Saturday, July 3, 2010

Jennifer Update

** warning ** this is long.

How have I been doing? If I am being completely honest (and when am I not), I haven't been feeling too great lately. As far as the LDN goes, I am up to .5mg for 4 days in a row. Depending on how I do, I may only do one more round of 4 days before moving to 5 days in a row. That's what I did with the 3 days in a row. I wound up doing only one or two rounds instead of three rounds of three days. However when I began the 4 day in a row, immediately I started noticing some unsettling things.

In fact, I'm going to take you all through each day the month of June. Now keep in mind this isn't every symptom on every day, but the ones that bothered me the most to write down in my calendar to share with the doctor when I go back.

June 1st: 1mg of LDN. This is when the headache got so bad that I thought I was going to have someone drive me to the ER from work. It hurt from the bottom of my chin to the tip top of my head. There was no part of my head that didn't hurt. Instead I waited and went to the LLMD on June 2nd to see if I should stop the current regiment until later and moved up my LLMD appointment.

June 2nd and 3rd: No LDN and I still had a severe headache, but it did start easing off and by Friday June 4th I felt pretty good. It was back to almost normal. By June 5th when I saw my LLMD, I felt great. That is when we decided to inch up my dose little by little.

June 5th I took my first 1/2 dose of LDN and woke up the next morning feeling feverish and a sore throat that lasted 2 hours. I also had a small picc line bump which would become a recurring theme later in the month.

June 6th required no LDN.

On June 7th, I woke to another bump on my arm and my shoulder ached tremendously throughout the day. I wondered when I had tweaked it, but knew there was absolutely nothing I had done to cause shoulder pain. 1/2 dose of LDN that night.

On June 8th and 9th, I had a really bad symptomatic days. I had a nightmare, woke up as if I hadn't slept at all and felt fatigued all day. I had a numb mouth all day and had a severe headache. It wasn't as bad as earlier, but it was bad enough that I took Tylenol. When the 9th got htere, my mouth ached as if I had dental surgery of some kind and the small headache continued. Even though I had the pain, I continued with the LDN on the 9th.

An amazing thing happened on June 10th though. I felt awesome. I had a great day. I woke up with no pain anywhere and had energy, but the cheek jaw pain was back on the 11th and I took the 1/2 dose that night. I wound up sleeping over 14 hours that night into Saturday morning and woke up feeling very feverish even though I only had a 97 degree temp. I took another 1/2 LDN that night too. This was my first 1/2 dose twice in a row.

When I woke up with at least 3 nightmares going into Sunday the 13th and woke with a small sore throat and feeling feverish again, but after about 11am I felt normal. There was no pain anywhere, but it took me over an hour to fall asleep Sunday night. That is extremely rare for me. I usually fall asleep within 10 minutes of hitting a pillow.

June 14th and 15th required 1/2 dose LDN. I had a couple of dreams on the 13th going into the 14th, had a pretty decent day after about 10am. However, on the 15th I was freezing cold the majority of the day with a pretty decent sized headache.

June 16th I had no LDN and that particular day I felt pretty good. June 17th and 18th required my next doses of LDN. Now one thing that has been common is waking up feeling feverish, but having a low temp. This was what happened on all three days, but after about 10 I felt good.

Then on June 19th, I had a really bad symptomatic day. I had a sore throat, bad headache, sleepy all day, took a three hour nap and lots of dreams. The worst part was that when I woke up I felt feverish, but by the afternoon I was freezing so bad I couldn't keep warm enough. This happened again on the 20th. In almost the same way, but I couldn't sleep Sunday night into Monday the 21st. I had 3 or 4 nightmares that were all about death and caskets. It was horrible. I kept waking up and falling back to sleep and the same dream would happen. And that I had 3 picc line bumps. I took the LDN on the 20th and the 21st. After about 10am on the 21st, I felt pretty good though I did struggle to sleep that night with another night of dreams. I had small headaches most of the day on the 22nd and I took my first 3rd dose in a row on that night.

On June 23rd, I had my first IV dose of Iron. This would make me decide not to take LDN that night since I knew more than likely my sleeping patterns would be off since I would sleep most of the day with the dose of Benedryl required before my first dose. This caused me not to sleep at all that night only getting about 15 minutes of sleep. So the next day, I had symptomatic day with pains in my legs and severe fatigue. I also had a headache most of the day. That night I did another 1/2 dose of LDN. I felt pretty good the next day (25th), but had a picc line bump upon waking. By this point I was getting frustrated with the bumps, but I had no idea how many were in store for me. I took my next dose of LDN.

On June 26th I felt pretty good most of the day, but there was one of those bumps directly ON the spot where my picc line was inserted. This rarely happens, but when it does ... it really itches. However that was pretty much my only symptom that day. Since I felt so good I had decided this night would be night 3 of LDN, but that I would take another dose the next night no matter how poorly I felt on the 27th. In fact, I did feel great most of the 27th. However, I had not one, not two, not even three ... but SIX picc line bumps on the 27th. I did wake with a small headache, but that disappeared over the course of the day.

On June 28th, I had a headache all day and had 2 picc bumps. The 29th however was a very bad day. My upper jaw ached terribly and the headache was horrible. An itching picc bump woke me up at 11pm. I decided to take the LDN even though I could have waited another night with the severity of the headache.

June 30th. There is no other way to say it, but it just sucked. I had my second IV iron (which that in itself was fine), but my mouth and jaw hurt so bad that it hurt to eat! Therefore I was hungry most of the day. My head hurt and I had 3 bumps that stayed the majority of the day (except when I was at the doctor's office and they convinently disappeared). I took the 2nd dose of LDN and decided that if it was still this bad on the 4th night that I would take 2 days off instead of just 1.

July 1st the mouth pain was a lil better, but it still sucked with 4 picc bumps. Took another dose of LDN. And yesterday. The weirdest thing happened.

I have joint pain. My finger joints are aching like they haven't ached in well over a year. My knees and ankles hurt. My head aches. I feel feverish. I hurt all over. I just don't feel well. I took my 4th dose anyways and tonight is a skip night. Depending on how I feel, I may skip tomorrow night too. The good news IS that my jaw no longer hurts.

Now my husband kindly explained what may be happening. He said that the LDN is supposed to boost my immune system. So it very well could be and what could be happening is that my immune system is now fighting the flurry of Lyme bacteria in my body causing a herx reaction. It's just amazing that 1/2 a caps of the LND for a total of 2 caps over a four day period could cause such pain in my fingers and other regions of the body. I was hoping that my fatigue would be better with the Iron IV's, but I think the herx is counteracting it. Oh well. That's a month in the life of Jennifer.


Kara said...

Oh my goodness, girl. You have started quite the journey! It sure seems as though your immune system very busy killing lyme. So this is a good thing! However, I also understand that although that brings comfort, it does not help when it comes to symptom load. Ugggh. So sorry you are going through all this again. I am praying for you! May the Lord bless you with what you are most in need of right now. Sleep well. :-) {{hugs}} ~Kara

Jennifer said...

Yup. I did stir up quite the monster. I can only imagine how much worse it would be if I weren't also being pumped full of iron. The exhaustion would simply be dreadful.

Anna McCarthy said...

Wow! I don't quite understand. I have been taking LDN for 5 years since before I knew I had Lyme. It was horribly hard to get onto it. I did 1.5 mgs for quite a while. I did 3 during the day but that was horrible for as food tasted like cardboard without any endorphins and I was made of cardboard too. It took me 6 months to get up to 3 at night and be able to sleep. Now I take 4.5 mgs. with no trouble. I know people for whom it caused no sleep disturbance but it sure was hard for me and I am grateful that most nights sleep just fine now. But I don't want to repeat that experience. I sure sympathize.