Sunday, May 27, 2012

Finally tried Gluten-Free Bread

I have been eating Gluten free, sugar free and 99% dairy free (kefir and occasional cheese) since November. I started this plan on my own the day after Thanksgiving. At the time, I wasn't sure if I was going to be able to find a doctor who would help me with Lyme so I was preparing to do herbs and diet changes.

My main concern with changing to this diet was that I was going to lose a dangerous amount of weight. Before I got really sick last fall, I was running or hiking every single day for 5-10 miles plus the several miles I walk during the day for work. When I came down with the fever that started it all, I lost about 25 lbs for no reason. I was a normal weight to start with, and the first doctor I went to started asking me about my attitude toward food as if I just had some kind of sudden eating disorder! So I wasn't sure if it would be a good idea to start changing things, but I thought I'd give it a try.

My diet before the change consisted of a lot of carbs. I loved pizza, bread, peanut butter, pasta etc. I am not a big meat eater. I hardly ever ate veggies or fruits. I did eat sweets, but not a ton of them. Now that I look at this list, I'm not sure how I was a normal weight. :)

Now that I've switched over, I eat a lot of gluten free pasta, salads, fruit, nuts, and ground turkey. Up until today I had not tried any gluten free bread. I had heard that it was really gross and because it's expensive (I paid over $5 for 4 English muffins) I thought it would be a waste of money for me.

So today after mustering the strength to trek to the grocery store (30 minute drive away).  I decided to buy English muffins made by Ener-G Foods. They come 4 in a package and they are in the aisle with the baking mixes. My package says they will last until 2013! I'm not sure how..........but I guess that's good.

As soon as I got home, I wanted to try it. I toasted it and got some organic peanut butter ready. I was absolutely shocked at the taste. After toasting it, it had such a moist and doughy texture that it kind of tasted like homemade bread when it comes out of the oven. Alright, maybe I'm just bread-deprived and my mind is playing tricks on me, but for me to like something it has to taste pretty normal. The bread was very mild tasting. I'm planning on making an egg sandwich on it tomorrow.

For now I'm back in bed. I am having a terrible bout of nausea (not from the bread) and I'm so exhausted just from leaving the house for 2 hours. I really need some relief from this. How many more days until my glutathione IV????

Tuesday, May 22, 2012

Scary Evening

Yesterday I went to the Lyme conference in Saratoga Springs held by congressman Chris Gibson. There were many well-known LLMD's presenting as well as other Lyme experts. It was a great, informative meeting. I had a great seat close to the front. I got to the meeting at about 8:00 a.m. and it ended at about 4:30.

If you missed the live streaming of the conference yesterday, you can watch it online now at this link:

After eating dinner in Saratoga, I headed home. I immediately took a shower and went to lie down as I wasn't feeling well at all. Within about an hour or so I started to get intense jaw and ear pain which was also affecting my teeth. I couldn't close my mouth normally to chew without pain. My teeth wouldn't line up correctly.

I took some advil and tried to go to sleep. At about 2:30 a.m. I woke up and went to use the bathroom except my legs wouldn't move! They were extremely numb and tingling. I didn't know what to do so I laid in bed for over 3 hours and waited. This is definitely not a case of my limbs "falling asleep." The feeling is just starting to come back over 3 hours later very slowly. Now I'm starting to get the same numb feeling in my hands. My typing is at about 50% right now.

I am incredibly weak again. I can barely move. I'm on day 6 of zithromax today. I am also several weeks in on doxy and mepron. I thought the numbness issue was solved from the glutathione/vitamins. I am a few days late for my glutathione IV and the numbness is back severely.

I guess the glutathione is doing more than just giving me a few hours of energy. This is the first time I've been late in getting one and the numbness came back on even worse than it was before I started them months ago.

Wednesday, May 16, 2012

Heart Issues

For the past several months I've noticed occasional episodes of heart palpitations. It feels like my heart is racing and beating really strongly for a few seconds at a time. Sometimes I also get really dizzy. In the beginning, it only happened when I was exercising; either running or carrying something up hills or up stairs.

The past several weeks, I've been getting these heart symptoms randomly throughout the day in addition to while exercising. Sometimes it's when I'm just lying down or after I take a shower.

Last week, the doctor that does vitamin IV's for me suddenly became more concerned than usual about making sure I saw my LLMD that week. I wasn't sure why though. When I went in, my LLMD immediately wanted to check my heart which was fine I think.

My heart rate is pretty low when I'm not having palpitations. It averages 60-70. My blood pressure was  93/54 the other day. I'm about to add in a new med which can sometimes cause heart symptoms. I'm already on Mepron, Doxy and Nystatin and I've been herxing severely for the past several weeks with no break.

I'm a little worried to add the new one in. I hope I don't get even worse.

Sunday, May 13, 2012

Scared Today

Today I'm kind of scared. I'm still having the flu-like symptoms and I'm starting to get a slight cough too. My hand rash (supposedly from doxy) is getting really dark and purple. It looks and feels like an infection to me. It's starting to itch and burn.

I had to take a lot of advil today just to function. It was Mother's Day and I wanted to be able to go out with my family for dinner. It would have been impossible without advil and alka seltzer, but I think I overdid it and tomorrow I have a liver function test which will probably not be good now that I took all the advil.

I went to the store this morning to pick out a hat. I DON'T want the rash on my hands to start on my face. If it's from doxy, it's only a matter of time. I am a person who NEVER wears hats. Today I got a plain black cadet style hat which kind of makes me look like a weird punk. I'm sure I'm going to get plenty of comments. I tried the hat out in a store today and got a lot of strange looks. I can only imagine what people who know me are going to say.

I feel terrible. I hope that I'm herxing and not reacting to one of the meds in a very bad way. I'm scared that I won't get better or that my meds won't be covered much longer. I have had so much pain this weekend and people always tell me to "call the doctor" but I feel stupid calling. In my mind I know it's probably a herx. I know that's what he'll say. I just hope that I am getting the point across about how bad I really feel. I'm good at hiding symptoms since I have to do it everyday at work. Every time I mention something, even to the doctor, I feel like a chronic complainer. I don't know what to do anymore.

Saturday, May 12, 2012

Flu-Like Symptoms Again

So after a "normal" week last week where my symptoms were numerous but not incapacitating, I woke up the other day with extreme exhaustion along with severe muscle and joint pain. My glutathione IV which normally gives me a few days of relief only lasted for a few hours on the day I received it. When I tried to go for a walk the next morning, I had pretty bad heart palpitations, dizziness and exhaustion. Unlike other weeks where I can go running for miles for several days after the IV, this week I only got a few good hours and a partial short walk.

Soon after that walk, I became freezing cold and began shaking uncontrollably. I felt like I had a high fever, but my temperature was 98.

I also started to get a headache which is rare for me while I'm on meds. With the new set of meds, I'm currently on week 4 of doxy and week 3 of Mepron. Along with the flu-like stuff, I was extremely nauseous and I can barely eat anything. I'm having severe stomach pain when I eat, so I can only eat a few bites of food per day which I know is not healthy.

My hands have a rash on them which is likely from the doxy. I also can't feel warm or cold sensations very well. Sometimes after washing my hands, I feel like I have a piece of ice on my skin for hours afterward.

My eyes have started twitching again and the overall aching is really bad again. I hope this will end soon. It's been two weeks since the last time this happened. This reaction is much more severe than the first time I took Mepron or doxy.

Sunday, May 6, 2012

Lyme Rage

Well, I think my Lyme rage is finally calming down. I have been in a TERRIBLE mood for the past several days. Every little thing annoys me to the extreme. I don't want to talk to anyone. I just need a break from all human contact.

I'm also really spacey. Today I drove past the store I went out to go to. I also couldn't remember names very well at all. I'm overtired, but can't sleep.

I've been having terrible joint pain in one of my knees and a rash appeared on my hands the other day which is getting worse. It's a cluster of bright red irregular bumps. Kind of like blisters on the knuckles of both hands.

Overall, I've been better than last week. I'm not in the massive herx anymore. It just seems like as soon as one problem dies down, another one pops up to replace it.

Tuesday, May 1, 2012

Glutathione Hurts when it Misses the Vein!

I generally get glutathione IV's once per week. I love to get them because I usually feel pretty good afterwards. I almost feel normal for a while and I can usually go jogging or for a substantial hike or walk.

My veins are really hard to find sometimes so it takes the doctor a while to locate a vein and a few attempts before he can get the needle in the right spot. Both this week and last week, I had an issue where the glutathione got outside the vein and into the "surrounding tissue." Usually when this happens, the glutathione resists being pushed through the tube. Then when it does go through the tube and enter your body it's like a thousand wasps are stinging you under your skin.

I was shocked by how much that hurts! The pain lasts for a while afterwards even when none of it is still going in. It's really weird because when it goes in correctly (inside the vein) it doesn't hurt at all. I'm now getting scared of the IV's. I hope this doesn't continue to happen.