My primary doctor thought we'd try one more form of vitamin D. She found a compounding pharmacy not too far away and the pharmacist said he could make a vitamin D cream to apply transdermally. The theory was that if my problem was being caused by the D passing through my digestive system, this would eliminate the issue.
So the nice pharmacist made up a batch of cream for me to try, and even shipped it to me free of charge (the sample was also free!). Based on his instructions, he gave me enough to last for 12 days which is long enough to see if I had a reaction to it. Of course, I only used half of the recommended dose, being afraid of having problems again. I applied it yesterday, and again this morning. On the way home from work tonight I started having the familiar lightheaded feeling. It only happened a few times, but thankfully I recognized it at once and I know it's being caused by the D so I won't continue with the cream.
My last experiment is to try only using it once a week. According to my doctor, if I can tolerate it in tiny doses, it's still better than nothing.
Monday, August 8, 2011
Sunday, August 7, 2011
Oil of oregano
I'm all for homeopathic remedies, but oil of oregano has to be the most disgusting thing ever! Yesterday, my ear and throat started hurting really bad. My left tonsil was all red. I've read great things about the healing powers of oil of oregano so I thought I'd try it. Now, I don't mind some oregano on my pizza, or in sauce, but liquid concentrate straight on your tongue is just awful! I drank a ton of water to get the taste out of my mouth but that didn't work. A couple of crackers helped a little but the taste lingered for hours.
The good news is that it did help my throat feel somewhat better. At least it was tolerable for a few hours. It helped enough that I even choked down a second dose later in the evening. Today I switched to Throat Coat tea with honey.
Update 3/25/16:
I've actually been taking oil of oregano on a regular basis lately, and it does have some pretty amazing powers. It helps get rid of colds, sore throats, and numerous other issues. It's also good for candida. Thanks to all the antibiotics I've been on in recent years, I tend to get candida in my throat. Oil of oregano stops the growth and actually keeps it away.
For a while, I was choking down the liquid form, but I recently began taking it in capsules. These capsules work really well, so I'm going to keep taking them twice a day, and more as needed when I start to feel sick. The liquid probably works better for certain things, like throat issues since it goes directly to the source, but the capsules are great for everyday use. Plus, it's easier to convince my kids to take a capsule when they get sick than it is to get them to drink something with the drops in it!
The good news is that it did help my throat feel somewhat better. At least it was tolerable for a few hours. It helped enough that I even choked down a second dose later in the evening. Today I switched to Throat Coat tea with honey.
Update 3/25/16:
I've actually been taking oil of oregano on a regular basis lately, and it does have some pretty amazing powers. It helps get rid of colds, sore throats, and numerous other issues. It's also good for candida. Thanks to all the antibiotics I've been on in recent years, I tend to get candida in my throat. Oil of oregano stops the growth and actually keeps it away.
For a while, I was choking down the liquid form, but I recently began taking it in capsules. These capsules work really well, so I'm going to keep taking them twice a day, and more as needed when I start to feel sick. The liquid probably works better for certain things, like throat issues since it goes directly to the source, but the capsules are great for everyday use. Plus, it's easier to convince my kids to take a capsule when they get sick than it is to get them to drink something with the drops in it!
Thursday, August 4, 2011
Still more questions than answers
It's been a long, hot summer. I don't handle the heat very well, but it seems that I'm not doing well even when I hide in the air conditioning. Fevers, migraines, aches and pains have kept up at a steady pace. It's been over 3 months since I finished the antibiotic treatment, yet at my 3 month follow up I still had pain and swelling in my ear, swollen glands, and a fever. If that only lasted a few days, I'd say it was a normal virus. But it's a daily occurrence.
So, more testing and waiting for more answers. Today all of my joints hurt. The last few days have been full of migraines and fevers. I can't win. If it was just one issue, I might have a good day every now and then. But every day it's something different. What will tomorrow bring?
So, more testing and waiting for more answers. Today all of my joints hurt. The last few days have been full of migraines and fevers. I can't win. If it was just one issue, I might have a good day every now and then. But every day it's something different. What will tomorrow bring?
Saturday, June 25, 2011
Slept late and had a nap
It's been one of those weeks. All of the running around to the doctors, and working, has me completely wiped out. Thankfully, Megan took a good nap this afternoon so I was able to take one, too. She wants to go to the pool later, which will wipe me out even more.
This week I had an uneventful visit with the dermatologist. Then I met with the audiologist. As I already knew, there is no cure for tinnitus. She offered a few suggestions of things that I can do to help, but no matter what, she said it will take time. Even if it is a result of the Lyme, she said it could take up to 18months after treatment to get better. That's not helping.
I'm still on the gluten free diet, which really sucks. I wish all of these trials didn't take so long to get results. It's been a week and a half and I see no difference. Man, I just want a magic pill! I'm eating right, sleeping as much as possible, cutting all of the bad stuff out of my life, and I still feel like crap on a regular basis.
This week I had an uneventful visit with the dermatologist. Then I met with the audiologist. As I already knew, there is no cure for tinnitus. She offered a few suggestions of things that I can do to help, but no matter what, she said it will take time. Even if it is a result of the Lyme, she said it could take up to 18months after treatment to get better. That's not helping.
I'm still on the gluten free diet, which really sucks. I wish all of these trials didn't take so long to get results. It's been a week and a half and I see no difference. Man, I just want a magic pill! I'm eating right, sleeping as much as possible, cutting all of the bad stuff out of my life, and I still feel like crap on a regular basis.
Monday, June 20, 2011
Doctors, doctors, doctors
Last week, I had a follow up with my ENT to go over the results of my CT scan. The short story is that he wants to remove not only the recurrence of the hemangioma in my neck, but also the muscle that it is attached to. He said it's not a rush, but he suggested having the surgery in the next 2 to 3 months.
I had another hearing test while I was there. Good news is that my hearing has not gotten any worse since January. The bad news is that they still can't figure out any reason for the tinnitus and ear pain. So this week, I'll meet with their chief audiologist to see if she has any suggestions.
The next stop was my primary doc. I wanted her opinion on the surgery, and also just to follow up in general. She had no ideas about the hemangioma. Even looked it up on her medical sites and couldn't find any information. She said it won't hurt to get a second opinion. Sure, in my spare time. Other than that, when I told her how bad I was still feeling, she suggested I try an elimination diet to see if there is any food allergy contributing to my issues (migraines, exhaustion, fevers). She's not the first person to tell me that you can be gluten intolerant without a positive celiac panel. I told her I'd give it a try, but I don't think that's the issue. I've been trying the diet for about 5 days, and the biggest problem is that I'm starving!
Today I took a vacation day from work (at least a little extra rest) so I can take Jackson to the Lyme specialist. It's his follow up appointment. My follow up is next week. But first, later this week I have a dermatologist appointment and the appointment with the audiologist. Busy, busy!
I had another hearing test while I was there. Good news is that my hearing has not gotten any worse since January. The bad news is that they still can't figure out any reason for the tinnitus and ear pain. So this week, I'll meet with their chief audiologist to see if she has any suggestions.
The next stop was my primary doc. I wanted her opinion on the surgery, and also just to follow up in general. She had no ideas about the hemangioma. Even looked it up on her medical sites and couldn't find any information. She said it won't hurt to get a second opinion. Sure, in my spare time. Other than that, when I told her how bad I was still feeling, she suggested I try an elimination diet to see if there is any food allergy contributing to my issues (migraines, exhaustion, fevers). She's not the first person to tell me that you can be gluten intolerant without a positive celiac panel. I told her I'd give it a try, but I don't think that's the issue. I've been trying the diet for about 5 days, and the biggest problem is that I'm starving!
Today I took a vacation day from work (at least a little extra rest) so I can take Jackson to the Lyme specialist. It's his follow up appointment. My follow up is next week. But first, later this week I have a dermatologist appointment and the appointment with the audiologist. Busy, busy!
Sunday, June 12, 2011
Still the same
It's been about 6 weeks since I finished treatment, and I don't feel like much has changed. I'm still running fevers on a regular basis, still have ear pain and tinnitus, and the exhaustion is even worse since starting back to work in the office. Now I have less time to cook healthy food. And more running around to do. I'm not sure how long I can keep up at this pace before I completely burn out.
Sunday, May 22, 2011
How do I get so lucky?
It seems like I am the only one with such bad luck. I finished my Lyme meds on a Friday, and thought I'd be feeling better by the end of the weekend. Instead, by Sunday night I had fluid in my ear and an ear infection. I felt awful on Monday. Earned myself another antibiotic and a steroid. It took a good week for my ear to stop hurting. The same ear, of course, that has been giving me trouble for the last few years.
Two weeks later, and I still feel the effects. My one month follow-up with the Lyme specialist is this week. I had really hoped to be feeling somewhat better by now. I'm still exhausted. I took a nap almost every day in the last two weeks. The only bright spot right now is that I've seen additional improvement in my neck. I actually noticed at the end of a rather long and trying day last week that I didn't have my expected neck pain. Not even the rotator cuff pain that was going down my arm - unrelated (so I thought) to the surgery. I'll take it!
Two weeks later, and I still feel the effects. My one month follow-up with the Lyme specialist is this week. I had really hoped to be feeling somewhat better by now. I'm still exhausted. I took a nap almost every day in the last two weeks. The only bright spot right now is that I've seen additional improvement in my neck. I actually noticed at the end of a rather long and trying day last week that I didn't have my expected neck pain. Not even the rotator cuff pain that was going down my arm - unrelated (so I thought) to the surgery. I'll take it!
Friday, May 6, 2011
Please disembark the ride
I just took my last pill for Lyme treatment. The last week and a half, since I had the PICC removed, has been quite the rollercoaster ride. Fevers have been up and down, migraines, exhaustion... all the fun. You would think that after the IV was done I would start to feel better. But, the doctor wanted me to take the oral Tindamax for 10 more days. The Tindamax is a killer. Now it's over. The warning label says not to drink alcohol for 3 days after finishing the medication, so I'm hoping that within 3 days this will be out of my system and I'll start to feel human. Maybe in time for Mother's Day? That would be nice.
The last few days have been rather surprising though. People I know who have had Lyme have started coming out of the woodwork. It's amazing that so many people have had it yet there is so little known about it in the medical community. Just today I was at my dentist and found out that one of the assistants "had" Lyme. She's been treated and told that she was cured, but she said she still feels like she's having relapses. She asked for the name of my specialist, because she said she now needs a doctor who really understands the disease.
On a related note, I got my own copy of the documentary Under Our Skin. It's a fantastic movie about how our healthcare system is failing Lyme patients.
Anyway, a little bit of energy would be nice. Maybe a day where I don't hit a wall at noon and need a nap before I fall over. Or a day without a migraine. A girl can dream.
The last few days have been rather surprising though. People I know who have had Lyme have started coming out of the woodwork. It's amazing that so many people have had it yet there is so little known about it in the medical community. Just today I was at my dentist and found out that one of the assistants "had" Lyme. She's been treated and told that she was cured, but she said she still feels like she's having relapses. She asked for the name of my specialist, because she said she now needs a doctor who really understands the disease.
On a related note, I got my own copy of the documentary Under Our Skin. It's a fantastic movie about how our healthcare system is failing Lyme patients.
Anyway, a little bit of energy would be nice. Maybe a day where I don't hit a wall at noon and need a nap before I fall over. Or a day without a migraine. A girl can dream.
Monday, April 25, 2011
So sad
I read an article in Vogue magazine today about Lyme disease. You would think that any news is good press for such a misunderstood illness. But this article just contributed to the confusion. It was basically an article about a woman with chronic Lyme. Then the article denied that there is any such thing as chronic Lyme. I hate to read things like this. For the last 2+ months, I sit in a room for over an hour every day with LIVING PROOF of chronic Lyme disease. Not just me, but 20 other patients.
On the other hand, the doctor's office loaned me a copy of the documentary "Under Our Skin" which follows several Lyme patients as well as several doctors' struggles with treating Lyme and maintaining their medical licenses. Another sad state of affairs. However, if you ever wanted to know some of what I've been going through, this documentary is not to be missed. I'll be buying a copy and will be happy to loan it out to anyone who wants to understand.
Update: There is now a 2nd movie, Under Our Skin 2: Emergence.
On the other hand, the doctor's office loaned me a copy of the documentary "Under Our Skin" which follows several Lyme patients as well as several doctors' struggles with treating Lyme and maintaining their medical licenses. Another sad state of affairs. However, if you ever wanted to know some of what I've been going through, this documentary is not to be missed. I'll be buying a copy and will be happy to loan it out to anyone who wants to understand.
Update: There is now a 2nd movie, Under Our Skin 2: Emergence.
Sunday, April 24, 2011
Good and bad
It's been a while since I've had time to write. Bad news first...
I had the surgery on my neck and had a 1 in 100 complication. At the end of the surgery, I had a dural leak - a leak of spinal fluid. Instead of being up and about the same day, I had to be flat on my back for 24 hours to allow the leak to heal. I spent the time in the hospital, only being allowed to raise the bed 30 degrees to eat. Thankfully, by 3 days after the surgery I was feeling fine. No positional headaches, which is the sign of the leak.
For the good news, the surgery was successful. I noticed an immediate difference, and could even separate out the pain from the surgery from my usual neck pain. The surgeon said that my nerves at C5/6 were extremely compressed so he expected me to feel worse before feeling better since he was messing around with everything in the area. The right side of my neck felt like I was beaten up after surgery, which was the inflammation from the surgery. My usual pain is more of a pinching feeling. Now, over a week later, I still need to rest my neck by the end of the day but it is so much better.
In other news, I only have 2 more IV treatments. I am really looking forward to having the PICC taken out. I will still have about 10 more days on the last oral antibiotic, but hopefully I will start to see more improvement once the main treatment is done. Time will tell!
I had the surgery on my neck and had a 1 in 100 complication. At the end of the surgery, I had a dural leak - a leak of spinal fluid. Instead of being up and about the same day, I had to be flat on my back for 24 hours to allow the leak to heal. I spent the time in the hospital, only being allowed to raise the bed 30 degrees to eat. Thankfully, by 3 days after the surgery I was feeling fine. No positional headaches, which is the sign of the leak.
For the good news, the surgery was successful. I noticed an immediate difference, and could even separate out the pain from the surgery from my usual neck pain. The surgeon said that my nerves at C5/6 were extremely compressed so he expected me to feel worse before feeling better since he was messing around with everything in the area. The right side of my neck felt like I was beaten up after surgery, which was the inflammation from the surgery. My usual pain is more of a pinching feeling. Now, over a week later, I still need to rest my neck by the end of the day but it is so much better.
In other news, I only have 2 more IV treatments. I am really looking forward to having the PICC taken out. I will still have about 10 more days on the last oral antibiotic, but hopefully I will start to see more improvement once the main treatment is done. Time will tell!
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