Myöhemmin sain lähetteen neurologille. Lisää tutkimuksia ja lääkäreitä ja MS-tutkimuksia. Kahden vuoden kuluttua menin reumatologille joka ilmoitti minun sairastavan fibromyalgiaa.
Maaliskuussa 2005 tyttäreni sairastui; kipuja, silmän nystagmus, lihaskramppeja ja nykimistä joka puolella kehoa. Lääkärin mukaan hänellä on fibromyalgia. Viimein hän meni lääkärin luokse joka oli erikoistunut borrelioosiin ja fibromyalgiaan. Yli vuoden hoitojen jälkeen tyttäreni voi paljon paremmin.
Omat vasta-ainetestini eivät täyttäneet CDC:n kriteereitä. Minulla oli vain muutama proteiini koholla. Lääkärini teki diagnoosin kliinisin perustein. Hoitoni sisälsi alussa 3 eri antibioottia. Nyt käytän vain klaritromysiiniä, käyn fysioterapiassa, tai ji:ssä yms.
Muutama kuukausi testieni jälkeen pyysin miestänikin käymään testeissä. Myös hänellä todettiin borrelioosi. Epäilen saaneeni borrelioosin häneltä.
http://www.remedyfind.com/newsletters/O ... sease.html
I am currently a 52 year old woman who has had lyme disease for who knows how long. Shortly after my daughter was born in 1976, I started having excruciating headaches. At that time, I had all the testing available and tried many, many meds to try to get rid of them. Finally got tired of the go-round and lived on aspirin until about 6 years ago. While I was undergoing all this testing, our 4 yr. old son suddenly got very ill and was discovered to have medulla blastoma. Ironic, huh? After almost 4 years of surgery, radiation and chemo, he succumbed to the disease, leaving behind a little sister.
I live in a rural state, with lots of woods and bugs and critters. The local hospital is basically useless and if you want any kind of decent treatment, you must take a trip to a nearby state, which for us is an 1 1/2 hr. drive one way.
The rest of the story begins like this: All of a sudden I noticed that I wasn't sleeping on my left side anymore. Why? Because my arm and leg were always numb and tingly. Then it moved on to both feet. When I went to see my gynecologist, I mentioned it to her and she sent me to physical therapy. That worked for a while, but not for long. My PCP thought maybe there was some heart involvement and did an EKG and other studies. Then finally decided it was time for me to see a neurologist.
Once again, every test in the universe was done, mostly to disprove MS, and more experimenting with meds from 2 different neurologists.. This went on for 2 years until I finally asked for a referral to a rheumatologist who, after 5 minutes, diagnosed me with fibromyalgia. I was given Celebrex and told that my PCP would be in charge of my care. That was when I discovered message boards. I joined the ProHealth FM board and was helped ever so much by the people there. I had also started seeing a chiropractor on a regular basis who was great at advising me on supplements and diet. I still see her every 3 weeks.
In March of 2005, my daughter suddenly became very ill - so much so that she had to give up her teaching job. She was in a great deal of pain, had nystagmus and muscle spasms and twitching everywhere. Her doctor also told her she had FM. Well, on the recommendation of someone her husband works with, she went to see a doctor who specializes in FM and Lyme. After seeing him for a few months, she suggested that I pay him a visit and get tested too. After over a year of treatments, sometimes going off because of various adverse reactions, she has improved enough that she is no longer housebound, but is still not able to work.
I did not test CDC positive; had just some of the bands. He gave me a clinical diagnosis. The doctor made me agree to one thing before he would treat me - get off all supplements. I was resistant, but went along as he is the only LLMD in the area. He does allow me to take Centrum, Vitamin B Complex, and Calcium.
I am being treated with clarithromyacin, plaquenil and vibramyacin (doxy). I have had to go off treatment twice because of a rash developing. We have not yet narrowed down its cause. We have eliminated meds one by one, or added them back one by one. I'm currently on just the clarithromyacin and hoping to add back the plaquenil soon. Saw a dermatologist just to rule out anything strange who did a bunch of testing. Picture this - I have a rash all over my body. The tests they did came back negative for anything like celiac or something. His opinion? A spider bite. Needless to say, I did not make a follow-up appointment. My LLMD found the results humorous too.
Although I am not allowed supplements, I do other things to take care of my health. As well as seeing the chiropractor, I also see a physical therapist once a week for myofascial release. I also go twice a week to a salt water pool, heated to 92 degrees and do Ai Chi, which is a form of T'ai chi adapted for water. I cannot recommend this enough. Being in the pool and doing gentle, no-side-effect exercises is my piece of heaven. The owner of the pool is a certified Watsu technician also. Watsu is a kind of underwater massage. I have this done when I am feeling really, really poorly and it helps immensely. You get to the point where you just want to stay in that pool forever - no pain and so soothing.
My main symptoms are pain in the neck/shoulder area, numbness/tingling, headache, insomnia, joint pain and leg pain, and last but not least, cognitive difficulties. I couldn't begin to tell you of all the stupid things I've done! The worst was when I stood in front of the telephone for 5 minutes trying to figure out what it was and what I was supposed to do with it. I knew the numbers meant something, but not what. Scary!
The rest of the story? A few months after I was tested, I convinced my husband that he should be tested also. He is a hunter, hobby logger and spends much time in the woods. He is often covered in ticks when returning from the woods. He also hadn't felt well for about 2 years. Sure enough, he also has Lyme. He was started on tetracycline and just switched to clarithromyacin and plaqunil for the summer months, as he works outside. He is responding better than I am, probably as he has had only 1 short interruption in his treatment. It is my opinion that he passed the disease on to me somehow. But the mystery is, how did our daughter get it too? She and her family do some camping every year and she may have been bitten more recently. She has a 4 1/2 year old son, who, so far, shows no sign of the disease but I have advised her that he and also her husband should get tested. The earlier caught, the better, as many of you well know. They're considering it, but have very busy lives, as you can imagine. I now belong to Lymenet and find much useful information there also. Some of it rather disheartening.
Back to me - I work 28 hrs. a week, and I find it very difficult. Basically, I'm working to keep my insurance coverage. My husband is self-employed and also covered under my plan. Even with the insurance, the co-pays really add up after a while. Gas prices for the trip to the doctor's every three weeks also adds us.
I used to have so much more energy than I do now and I always hate getting out of bed in the morning only to face another day of pain - that's when I get some sleep, which is rare indeed. I used to be involved in community theater, but doubt that I would ever be able to do that again anytime soon. I do sing in the church choir. I avoid going out once I get home from work as I am always so exhausted. Many nights I take an Epsom salt bath to ease the pain, mostly in my legs. Bedtime is usually 9:00 and if I sleep, I'm up by 5:30 a.m. I am able, so far, to continue to do a little yard work, but my husband keeps threatening to hire it out. I do enjoy being outside and if I take it easy I'm OK. I would like to be able to return to some kind of normal life someday; not the life of an 80 year old!
So, around here at least, Lyme is a family disease. We will keep on keeping on until the whole bunch of us feels human again.