Main » March 2005
March 29, 2005
2nd Round of Doctor Visits 3/05
Just finished up a second round of doctor visits. Each doc has something special to add to the picture. Dr S put me on synthroid since I'm low in thyroid. I'm also making antibodies against thyroid; this is called Hashimoto's disease. As I understand it, Lyme can cause both these problems. Evidently I'll always have Hashimoto's disease but it sounds like it may not always be a problem and I may not always need to be on thyroid. Dr S is very impressed with how well I'm tolerating and responding to doxycyline. He asked me how my vision was in my left eye. I covered my right and looked at a paper I was holding. I could read it! Not perfectly but by looking through the "lace curtain" and scanning to keep the clear part of my vision on the part of the page I was reading I could actually read it. Good news!
Dr G thought to test me for HHV6 antibodies. I have elevated levels of them. Dr H put me on an antiviral. I got nervous about this and wasn't clear enought to ask the right questions during the appointment. I associated antivirals with AIDS. I worried for a day until I could get to my computer to check it out. It seems that 95% of people have the HHV6 virus; it just stays dormant most of the time. When the immune system weakens, as when it fights chronic Lyme, the virus multiplies. Then the immune system is further taxed trying to fight HHV6 as well as Lyme.
It also took me awhile to find out that I only have to the antiviral for 15 days. Since I expect to be on antibiotics for many months, I assume that same for the antiviral. I'm on day 6 and have been experiencing the side effect of agitation and itchiness. My palms and soles of my feet itch and my right eye itches. The skin around my eye is rough and puffy from my rubbing it. I read the information sheet on the drug but it didn't sink in until the side effects hit and I woke up in the middle of the night to read the sheet again. Now, I hope that once I finish the medication my eye will stop itching and return to normal.
Dr H did neurological tests on me and was absolutely astounded by how well I have responded to the antibiotics. At my first exam when I tried to walk heel to toe with my eyes closed, he had to catch me as a lurched over. This time, I could actually do it.
Gotta go, K needs my help putting N to sleep.
Posted by LymeMom at 7:24 PM | Comments (1) | TrackBack
March 15, 2005
Late second post
This post is later than I'd intended. I was overwhelmed with doctor's appointments, Lyme information and I was also a bit hesitant about sharing in this public forum. I decided to get over that.
I lucked out and got appointments with Dr H, Dr S and Dr G all within one week of each other. No wonder I felt overwhelmed. They're all outstanding docs. I still have not decided which one not to see. I saw Dr S again last Tuesday. I got test results. I didn't test positive for any co-infections which is great news. My SPECT scan was normal which indicates that the Lyme spirochetes have not entered my central nervous system and that the neurological symptoms are in my peripheral nervous system. This is also great news because it is tough to get antibiotics across the blood-brain barrier.
It seems that I have developed antibodies to thyroid hormone and am low in thyroid. Dr S wants to put me on synthroid. I'm averse to taking synthetic hormones since I've been so bought in to the alternative healing world. However, the alternative docs have also prescribed progesterone. Granted it's grown in animals but I've heard negative things about the analogous thyroid hormone grown in animals, armour. I drove an hour north too see my "old" chiropractor. He suggested some natural extracts from animal glands. (This was before I got the test results showing my low in thyroid.) I prefer natural and I trust this guy a lot however I felt scared after I left. Somehow his concern for me turned into fear on my part. Also, natural extracts (especially bovine) have a potential to harbor prions - the cause of BSE or mad cow disease.
I also have to keep in mind that I may not be on thyroid forever. Lyme can cause low thyroid in which case curing Lyme will help. Many women develop low thyroid after pregnancy. If that's the case, I may be on thyroid for the rest of my life.
A contact from long ago (friend of an ex with whom I had a messy break-up) had a formulating pharmacy make thyroid hormone which was released in small amounts that more closely resemble the natural system. Maybe it's time to cross that bridge. I'll decide after I ask Drs G and H, on Thursday and Saturday, respectively.
Sometimes I feel caught between the world of natural healing and that of Western medcine. I grew up eating organic foods and whole grains, a true California girl. My Mom avoided antibiotics and I have, too. Now they have the potential to give me back my life. My mind is open enough to know when heavy artillary is necessary. The challenge comes when there are provocative alternatives. I have not yet met a doctor who has experience with both. Like all of us, docs make the best choices they can, and then develop experience based on those choices. It's up to me as a consumer of medicine to decide how to proceed. I use some combination of intuition, scientific knowledge and trust in the doc make my choice.
On the Mommy front, K and I decided that N's daycare no longer seemed appropriate. We selected it on a recommendation from a neighbor. I didn't interview any others since I was so wiped out by Lyme and caring for N. N had bad diaper rash from teething so he needed to be changed frequently. Three days in a row he had a poopy diaper when we picked him up from daycare. The last day I saw a group of children standing in front of the provider. N was near tears. The provider was so involved in what she was doing that she didn't tend to N. I took N out to the car and realized the problem. I took him back in and told them the problem. They changed him on a low table in front of all the other kids. He was crying and his bottom was seeping blood (I had fed him food that was too acidic-Mommy mistake). I felt that the situation was humiliating.
I had always had my doubts about whether the daycare was a good match. And for some people it might be fine. K had been able to solve problems with them when I could not however in the past couple of weeks, K had started to question the care N was receiving. We decided that night to pull him out.
So I've added daycare search to my list of things to do. And I don't have daycare to give me the time to do it! These are the choices we make. We chose to pull N from the daycare immediately and now I have the difficulty stemming from that choice. K has been extra-supportive so he is taking his share of the responsibility. I'm glad I married a man who has doesn't have a rigid sense of gender roles.
That could take me off on an entirely different subject so I'll close here.
