Friday, July 31, 2009

I've got Lyme Disease

Yesterday I went to see a new doctor, Dr. Talty in Watsonville. I really like her. After reviewing my health history and my lab results form Igenex (the place in Palo Alto that has through tests for Lyme ) she says that I most certainly have Lyme. She said that because of what I have already been doing with my diet and supplements that I've got a head start on getting well.

She put me on doxycycline for a month, sent me home with seratonin, a prescription for melatonin, a detox kit, and some lab orders. She said that I should be doing dextox baths and foot patches as often as possible. She also said that I would probably need 18months - 2 years to get completely better. That is when I can start trying to get pregnant.

The medicines I am on should be working pretty soon, but I'll likely feel much worse before I really get better. There is this called a herx reaction, which happens when you kill of the bacteria and the release toxins into your body. Te toxins make you feel worse for a while until you can get rid of them with detox. Most likely the road will be up and down.

She wants me to do more testing for the other bacterial infections that ticks can spread. My naturopath has already told me that I have many of them and she has been right about things so far. Dr.Talty just needs to confirm and look at exact levels before we I can use the meds to get rid of them. I also need to get tested for viruses because you have to get rid of the viruses and the co infections before you can really rid the Lyme bacteria from your body. I also need to do hormone testing because my hormones for coping, stress, and mental function are out of wack.

We have already spent several hundred dollars if not a thousand on tests and treatment for me. Now I need to have another round of testing and it will costs us over $2000! The really messed up thing is that the large majority of Lyme doctors do not take insurance because. This is because the CDC does not recognize late stage or long term Lyme. If they work with insurance companies they often get a lot of pressure because the treatments that have actually worked are not in the guidelines for treating Lyme. This is because a group of people who were being paid off by insurance companies wrote the guidelines to state that late stage or chronic lyme doesn't exist and not to give more them 3 weeks of treatment with ineffective antibiotics. Super lame!!! So because we have an HMO we can try to submit claims, but they likely won't go through. After I get the results back form these new tests Dr. Talty will tweak my treatment plan and it may have to include very expensive antibiotics. She said as much as $1100 a bottle! Given that I haven't been able to work since mid March this is going to very hard for us to pay for.

I'm glad to finally know what is going on and begin my treatment process. I'm really tired all them time and I don't have much endurance for things. One of the hardest parts is that I also not mentally there as much as before. I'm really forgetful, and have a harder time paying attention and absorbing new information. I have been spending a lot of my time reading, making jewelry, chatting with friends, and watching the garden grow. Emiliano is doing the best he can with all of this. I think he's getting tired from taking care of me for so long and sad that I can't get up and go play with him. We are both going to need a lot of support through this next phase. There are many things friends and family can do to help us out such as driving me to run errands, help with housework or cooking, financial contributions, come over and hang out, or just call and say hi. If you want to know more about the small things you can do(they'll fell big to us) to help us please call or email, we'd both really appreciate it.

Wednesday, July 22, 2009

Lyme Update

Since I last posted an update about my health a few things have happened. Emiliano and I have done a lot of research about Lyme disease, diagnosis, and treatment. We are reading two books, speaking with friends and family, and even went to a Lyme support group last week. I have received the test results from the Igenex lab in Palo Alto. They were indeterminate, neither positive or negative. That is frustrating. Now I have an appointment on July 30th to see a Lyme literate doctor in Watsonville, Dr. Talty. She was recommended to me by the lyme group members. Hopefully she will be able to confirm the diagnosis given by my naturopath and get me on a comprehensive treatment plan. I will let you know what happens after that visit. Right now I am just taking things one day and one step at a time and beginning to incorporate new ideas from these books into my life in hopes of beginning to feel better.

Current symptoms:

Migrating pain, forgetfulness, mood swings, overwhelmed feeling, processing difficulties, digestive issues, sleep disturbances, blurry vision, headaches, trouble driving, I can't even remember all of my symptoms. In general I just feel run down and weak like you might if you were getting sick. Sometimes I have better days and others I just feel sluggish and out of it. Even through all of this I remain really happy on the inside and I am so looking forward to getting my life back.


Emiliano has been great in supporting me through this and has done so many things for me that I can't thank him enough. Thank you also to everyone who has called or emailed to check in with me. It is so great to have friends and family support during this rough time. I'm not getting out and about as much because I don't feel good about driving. Please know you are all welcome to stop by and say hi anytime. I'm home a lot and will likely be here.

Trip to Tahoe

Earlier this month Emiliano and I went to Tahoe for a week. His parents rented a wonderful house for friends and family to enjoy. Thanks Roberta and Jim!

We stayed near Carnelian Bay about 4 blocks away from the lake. We did lots of fun stuff while we were there. Emiliano and I played miniature golf. Jim, Roberta, 2 of her friends, and I played apples to apples which we all enjoyed and got many great laughs from. I spent a long and beautiful day at Sand Bar beach while Emiliano went mountain biking up a huge piece of granite and Jim and Roberta went kayaking. I couldn't believe how beautiful it was. The water was a beautiful blue, the sand light colored and the mountains and forest just steps away. It was unreal. I went for a walk while at the beach and I think I saw my first marmot. Do they live there? It looked like a huge, fat squirrel with out a tail. I also went to a beautiful beach (pine something) with Emiliano and we got into the freezing cold water. He went for a short swim, but it was way to cold for me. I saw super cute baby duckies swimming behind their mamma duck. I spent a few hours shopping with Roberta and she took me to a fun candy store with fancy chocolates. I had a tequila dark chocolate that was sweatened with agave nectar and topped off with salt. Roberta bought the National Park edition of monoploy and I won! I also had the best and most expensive pedicure of my life. It was great! I did a lot of hot tubbing and tv watching, relaxing, and ate great food. Emiliano says I took recreation to a whole new level.

The house was great, the beds were so cozy, the food was awesome, we had cable to watch the tour, the mountain air was fresh, and the company was fantastic. We had a wonderful time and were sad to leave.





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