Well, with the help from the moderators, I finally figured out how to get on here myself. This is Jeanne. It feels nice to be talking to some of you again.
And yes, there is a story behind my name. Our daughter gave Mike the name Dorkdad, our son gave me the name wackowoman. Years ago, when he was 17, he asked me for a stamp. I went into mother mode and 'lectured' on how he was old enough to buy his own stamps. He sat and laughed at me and said, "well, you don't have to go wacko!" Since then I have been given address labels with Wacko woman printed on them.... you get the picture.
Anyway, Maureen, I know you went to see Dr. Crist, I did read that post. How are you doing on the protocol? I missed Ronnie's meltdown - was that before you went? I have been off the boards for awhile with all this brain stuff. Dr. David is inspiring. I wish I could just move there for a couple of months and get my body completely back in shape. There are so many pieces to this puzzle (and I have never liked jigsaw puzzles!)
Denise -I am so glad to hear you are taking Dr. David's remedies successfully!
I truly feel like the Lyme is not so much of my issue right now as my brain. Whether the Lyme caused my brain problems I don't know. Dr. Amen (the brain man) couldn't tell me. I am waiting to hear what Dr. David thinks. (My e-mails to him keep getting returned so I haven't been able to get his opinion yet). I am encouraged that this is something they feel can be fixed and the brain has an amazing capacity to heal, but I am extremely discouraged by how much time it all takes. This is one of the reasons I have stayed off of the boards - I wanted to have good news to share not tears. As always I am touched by everyone's concern. I felt like I also was slightly unbalanced with the remedies of Dr. J. I don't think they effect me that way now, but it is hard to tell because I get dizziness and naseau with the little seizures. Sometimes it feels as if I've picked up some else's glasses things go so weird. And lot's of awful headaches. Thank you for the angels!
gerribear - I have never had an MRI so I don't know whether the warts are the same. I had a SPECT scan - it shows much more than a MRI. The warts were like little upraised buttons, the old fashioned kind that were fabric covered. There were three of them and I am told they do cause seizures. The pictures on the inside of my brain showed blood 'pooling' at the thymus part of the brain. This was when my brain was at rest - not good. The blood meant the area was really hot. On a scale of 1-4, 4 being the hottest. mine was a 4. This is the area that controls anxiety, body temperature, hormones, dark thoughts, and sleep. Fits me to a "T". So the hope is that the medicine will turn on the GABA recepters so my brain will know when to turn on and off. I don't really understand what this really means, it is just what I am told. I just hope it all works. The medicine is slow to work because it has to be started in a very low dose, so it can take weeks to months to work. My ND has given me some natural things to calm down the seizures. These are things I have tried before, but hopefully using them will mean I won't have to use as much med's, so less risk of side effects.
Long answer for your question!
Thank you all for being there. I know you all UNDERSTAND when I say it is a long tough road. I am waiting for the day when I can see the end in sight.
I would never have guessed that a wackwoman and a dorkdad could be so compatible.
I am on 2 different combos and I read on the paperwork that the first (clindamycin/quinine) might give me fits but it didn't. What drove me crazy was the baxin/plaquenil combo. I took the c/q for 10 days and then the b/p for ten days and am now back on the first combo. After about 4 days on the b/p combo I felt like my feet were nailed to the ground so per Dr. Crist's instructions I stopped for a few days in case it might be a herx. When I started back up it wasn't quite so bad. I guess I will switch these back and forth for 6 - 8 weeks and then if I feel better we will continue and if not change to another combo. I am very impressed with Dr. Crist's knowledge of the disease and his approach. He likes slow and easy so your body can tolerate it. I hope I will see some results soon. I will say that after about 4 days on the first combo I went in the kitchen and cleaned my refrigerator and didn't seem to tire as quickly. Of course that only lasted for 1 day but it's a start.
As for Ronnie's meltdown he did nothing but cry one whole day and told me he would go upstairs and out to the shed and cry all the time. Although I have a lot of faith in the natural approach I felt like I had to do this for him. I think he felt like he wasn't being able to help so this makes him feel better that he convinced me go to an llmd. After 5 years of this I don't care what gets rid of it. I don't expect miracles just some baby steps in the next few months. I will keep you posted.
I hope you feel confidence in your brain doctor as that means so much. I am sure you would like Dr. J's input too so keep forwarding stuff to him. I think of the two of you often and wondered how you were doing. Maybe if they get the "warts" straightened out healing will come quicker.
Have a great Thanksgiving. By the way did you see that I became a first time grandmother on October 15th? Her name is Ava and she is just darling. I am so thrilled with her but very cautious about holding her until the hands get better and wouldn't dare try to walk while holding her for fear of falling. My daughter who has been a challenge for so long had her but it is amazing to me what a huge change there has been in her attitude. She is so pleasant now I can't believe it. I think she has discoverd a whole new perspective on parenting after the hard pregnacy and delivery. Just like lyme - "whatever works".
I am smiling at your name "wackowoman" and the story behind it, yes, it does go with Dorkdad, ha, ha, ha!
I feel lucky that Jernigan's medicines are working for me. It was simply sheer fate because I couldn't afford to see a LLMD and the antibiotics. I did take Doxy for almost a year, but I relapsed afterward. The Doxy did give me back my legs as I couldn't walk.
I have more energy and just feel better as a person with Dr. David's medicines. I think he is a brilliant man.
Jeanne, I was reading about "lesions" in the brain caused by Lyme, and I read that Amy Tan (a famous author) has 16 lesions on her brain caused from Lyme that caused hallucinations and seizures. She is currently taking anti-seizure medication and that is helping her.
I don't know how old that article is and how Amy Tan is doing now. I know she is very active in Lyme Disease and has even started a program for children with Lyme who can not afford medical treatment.
Anyway, I believe that between Dr. Amen and Dr. Jernigan, this problem will get resolved and you will get better.
Please keep posting even when you are down in the dumps. That's what this site is for. Please don't feel you have to only give us "good news" as we are here to support you through the bad times as well as the good.
Ava is doing great. She pretty much slept the first 3 weeks she was here but has now found her lungs. She is the most beautiful baby around. Of course I am not prejudiced or anything.
Some crazy things have been happening in Rhonda's life. You know she and her boyfriend split when she got pregnant. They are both 35 and pretty comfortable with their careers. Anyway we are now finding out first he wanted her to have an abortion and then when she wouldn't he wanted her to give the baby to one of her friends who is having a hard time getting pregnant. I personally have never met the guy because of my being sick, she hasn't brought him here so I won't talk about him other than to say he needs to grow up.
When Rhonda was pregnant and just about lost her job she tried to contact him to put Ava on his insurance when she comes. He makes about $250,000 a year and doesn't carry insurance because he is healthy. He never called her back and since the break-up has bought a little Mercedes and a Land Cruiser. In the meantime Rhonda has covered all necessities and the medical. She had a pretty rough time with the pregnancy and delivery too and it would have been nice for him to be there.
A few weeks ago Rhonda got an e-mail from his sister in California that he had told them Rhonda was pregnant. He didn't even know if she had had the baby yet or not. Rhonda had never met his family. The sister called her and left messages and was horrified and said he owed her a liftetime of apologies. Wow! His mother lives in Denver and asked to come and see Rhonda and Ava. She is just mortified with her son as is the entire family but wants a relationship with Ava if Rhonda will allow it. In the last 2 weeks she has flown here twice. I know she would love to bring the two of them together and have her granddaughter but I think there is too much water under the bridge. I think she feels she can correct his mistakes but he's too old for that. She claims he wants to be close to Ava but Rhonda thinks it is because the family is so freaked out. The mother told Rhonda that children in the "entire" family are top on the pecking list and right now Ava is at the top.
I believe Rhonda almost could have forgiven him but disccovered he participates on a website with very young girls who are posting some pretty trashy photos in order to get dates. This might have been the final blow. Jennifer actually is on the site and it is for high school, college, and very young professionals but definitely not 35 year olds. It's not a dating service or anything but Jennifer has been able to keep in touch with friends she hasn't seen since high school. Some girls are just trying to get dates by posting some pretty trashy pictures. His mother insists that he wants to see Ava but Rhonda is very protective and is looking to the baby's future not just the here and now. I hink she is wise to do that. His mother and sister will abide by any decision she makes. Rhonda just doesn't want him flipping in and out of Ava's life like he has hers. She also doesn't want to ever have to explain why his family is so involved and he isnt. She feels that would be too tough on Ava.
I really feel for his mother because she fears loosing this precious baby as a granddaughter and looks at her son and wonders where he is coming from so it is a double loss for her. They are a very nice family. For now the relationship with his mother is okay but not sure how involved it should get.
I will have to say that this child (Rhonda) who has driven us crazy for about 20 years with her attitude has done a complete about face in the last few weeks. I told my best friend it is as though her attitude came out with the placenta. I have been waiting for this for a long time. Maybe now that she has somebody to think about besides herself she will go back to being the delight she was when she was younger. We haven't gotten birthday cards from her for years and were lucky to get a decent gift but Ronnie's birthday was this week and she brought him "The purpose driven life" and 2 cards, one from her and one from Ava to Grandpa. Real sweet.
I didn't mean for this to be so long but it brings you up to date. Hope you are doing okay. It's great to have Janne and Michael back isn't it?
I am so glad I asked about Ava, what a story! Rhonda sounds like she really grew up, that's so wonderful! And little Ava sounds like a darling, awwww!!
Unbelievable about the boyfriend, he is acting like he is 16 years old, and as you know, some people never grow up. Sounds like he has the "Peter Pan Syndrome". I think Rhonda is acting very wise indeed.
I feel for Peter Pan's parents, technically they are the grandparents so of course they want to be involved in the first grandchild's life. But is must be so awkward for Rhonda as she really makes the final decision about how much they should be involved or not be involved.
That's so nice that Rhonda bought presents from herself and from Ava, now that's thoughful!!
Keep me posted on Ava and this story, I bet that Rhonda nothing to do with "Peter Pan".
What a touching story about your daughter Maureen. And such a blessed grandchild! I have two children but as they are not married yet, no grandchildren. Sounds like a treaure to me.
I hope you start responding to the med's soon. (I hope I start responding to the med's soon!) BTW - are you sleeping with the Trazodone the Dr. put you on? Sleep continues to be my number one issue - I get so weepy being so tired. I have tried Trazodone (as well as Ambien, Sonata, Lunesta) and am trying a new 'patch', but nothing seems to help. They say it is because of my 'hot' spot inside my head in the thymus area (so my switch to shut off doesn't work). Part of what the medicine is supposed to help. I am praying they are right.
thanks for sharing about the Amy Tan- can't remember if that way you or Denise (didn't she write The Joy Luck Club?) I had read she had Lyme's. I wonder what medication she is taking. it would be interesting to find out.
I treasure you both. Thanks for all your kind words.
p.s. I have never been able to figure out how to use all the smily faces, etc. on this page. Could either of you explain this to me?
Yes, Maureen's story about her granddaugher Ava is really touching and so beautiful!
It was me that mentioned Amy Tan (yes, she wrote the book "The Joy Luck Club" and many other books, I believe they made a movie from the Joy Luck Club.
I don't know if Amy Tan is completely recovered from Lyme, I would like to find out. The last article I read about Amy Tan talked about how she was part of a Lyme Presentation about her foundation for Lyme Aid for Kids, so she really has become involved with Lyme. Maybe she will write a book about it.
As far as sleeping, another member (I forgot who) wrote about taking Sublingual Melatonin for sleep. I was going to look into that besides some other interesting products that have been mentioned.
Oh, those smiley faces, I believe you click "Advanced Mode" and then you can click on them in your post and they will show up.
Im so glad you updated us all on Ava. Im sure shes such a joy to you. Praying you will soon be "playing" with her.
I just love the name both yours and dorkdads. I too am just beginning the journey to winning the battle against Lyme. Keep us all posted good news or just a cheer up call. I may not post more than a word or two as thats about as far as my brain will take me. But it will get better for us all. Marsha
Nice to meet you Marsha - there must be a story with your name also (Pearlscale). Someday when you are up to it I would love to hear it. Would also like to hear how you are treating the Lyme, but I totally understand not always being able to write. I was off the board for almost 2 months because I just couldn't do it. I will be thinking of you though.
I never got the script for the trazadone filled. I turned it in at the pharmacy and have a year to do so but I thought it was a muscle relaxant not an anti-depressant. I would really rather stay away from those if I can. It was me that talked about the sublingual melatonin. Dr. Crist said to take it with the trazadone but I take it alone. It is by Source Naturals and is 1 mg. You can take 3 I think. I started out taking just one but now only take 1/2 each night. Sometimes I wake up but usually fall back to sleep. I put the other half on the nightstand and take it if I can't get back to sleep. There have been a few nights it didn't help all night but on the whole I think it is the best over the counter stuff I have tried.
Ronnie even took it for a few weeks when I first started and he slept like a baby. He was so stressed out over me and now he is pretty calm. I think the melatonin works with the seratonin in a calming way and it sure helped his mood. He hasn't taken it for a few weeks but I wish he would because like I said when he is on it he is much calmer. The beauty of the sublingual is that there have been no goofy dreams and it goes right into your system so there has never been a "hangover" problem. It was pretty cheap and might be worth a try. Ronnie got it at Whole Foods (a natural type grocery chain here) but I know a lot of health food stores carry Source Natural brands. By the way it has a peppermint flavor. Let me know if you try it and it helps.
By the way after I have typed a sentence or whenever I want to use one of the smiley icons I just move the mouse over there and click once on the one I want to use and it automatically shows up next and then you continue to type and then add more if you like. Don't feel bad, it was less than a year ago that I was considered e-literate. I knew the computer had an on/off switch and a plug. My first attempts at using the mouse were a riot. I was all over the place. I am pretty proud of how far I have come and even surprise Ronnie by finding things on the net he couldn't locate and he has been in the computer industry one way or another since 1963.
Last edited by Betterdaysforme; 11-19-2005 at 06:49 PM.
Pearlscales came about from the small business I run out of my basement. Its a water garden business. My favorite fish is the Japanese Butterfly Koi. Some eat out of my hand. They are my babies. My water gardens gave me back self respect when I thought my worth was worthless. I couldn't go and hold down a job.
People now come to me with their water garden needs. I carry everything they need to create their own backyard paradise complete with fish. My 2nd favorite fish is the little pearlscale. It has a crown like an oranda on its head, it is a very fat sided fish. The sides look like rows of pearls running up and down thier side. They are graceful, very slow movers. A really fancy oranda fantaintail with pearls. So trusting, not afraid. The pearls remind me of the warts/lesions i have on my brain. So many reasons I love these.
Couple weeks ago, larry had mini stroke was in hospital 2 days. The next morning after he came home, we found a blue heron standing in my pond. He was so big his body and neck and head were out of the water. He had eaten all my pearls (my babies) also he had eaten about 10 of the big black telescope eyes.
I did have to close early this year (Im seasonal with larry and my daughters helping when it gets buzy. I plan to reopen in March if my health will co operate.
What a great story. I love it when some of you tell how you came to your healthboards name. It makes mine kind of plain but then again what I am looking forward to.
I am sure your little business gives you much satisfaction. I miss doing my crafts terribly. Ronnie did take a lot of my Christmas stuff from year's past to the shop that sells for me and already they are calling trying to get more of the 6" wooden Christmas trees I do. I only had 2 and they are sold. Ronnie can do the tree and actually enjoys it but I have to paint a 6 x 12 inch sign red and hand letter Merry Christmas. I don't think I can because I can't hold the brush. I also need to cut out 4 stars for the top with the scrollsaw. I can't get to the shed. Ronnie bought enough pickets to do 4 more today and I will attempt the signs.
I also got a call for a snowman/tree/birdhouse lamp I do but had a few already made. This will definitely help this Christmas. I have found some good deals in the catalogs but the stores offer even more. Maybe next year.
I have told my kids there is a limit this year on what you can spend per person. Of course I am sure Ava will clean up. Our son will be home from Alaska to see his niece too so everybody will be here. That's what matters most. Boy did I get sidetracked here.
I love hearing your story. It's wonderful you have something you enjoy so much, and turned it into a business. That is true joy. I'm so sorry to hear you lost your 'babies'. Is this something you can guard against in the future? Keep those herons out? Are you going to get any more of those dear fish? I love your description of them.
Glad that you and Dorkdad are back!! From what I have heard Amy is in a wheelchair. I had heard that she was doing biaxin injections that she said were helping. This has been several months so there might be a better update.
Marsha - I was so saddened by the loss of your babies. We have lossed so much in our lives, it is just an extra hurt when something like that happens. I love to watch blue herons fly, but I know what a problem they are for people with pond. I am so sorry..... Thank you for sharing your story.
Tell me more about the warts/lesions you have. Are you taking something for them? I was just put on an anti-seizure medication for them( which takes a while to work). An the meantime, my DN put me on a product that reduces inflamation in the brain and that has helped with the seizures and dizziness - but has not helped the lack of sleeping.
How is Larry doing after his stroke? That must have been scary. I know how much I depend on Mike right now while I am in this place. Hope he is doing ok.
Ok, I'm trying this out this little wavy guy to see if this works.
I will try the that type of melatonin - we also have a whole foods, so it is worth a shot.
It would be fun to sit with you and watch as you do your crafts - I used to do that type of thing a long time ago...
Thank you for the welcome back . I sure hope Amy is doing better now. Since I am rather out of touch I am wondering how you are feeling. Would love to hear.