lymelight

update page

UPDATE 2/23/01     UPDATE 6/6/02 IN RED
When i started this page sometime in 1999, i really had hope of finding a light at the end of the tunnel. its is Feburary of 2001 and i am as sick as i was 2 years ago. no change My IQ has plummeted and i am having seizures on a weekly basis. (seizures controled by meds) i am being treated for the lyme as well as the seizures. I am unable to work, but my LTD cut me off! I am appealing that. won appeal after 3 months I am waiting for a hearing with SSD after being denied twice. hearing in may of 2001 approved in june, first check in november. I cant believe after 2 (3 1/2)years of aggressive treatment, i am still very sick. And I cant believe that Social Securiy and Long term disability does not take lyme disease seriously. I have been lied to by the medical community that told me i would recover in 2 weeks. i have had my words twisted by LTD adn SSD. If you or someone you love has Lyme with neurological involment, please find a lyme litterate doctor and find a good neurolgist. I have edited this page because in the past i tried to have a sense of humor about the illness. Nothing about this disease is funny. Please remember i was diagnosed 9 months late and than treated improperly. Some people are cured. My symptoms are all neurolgical. i dont have arthritis or heart problems. I do have chronic fatigue and fibromyalgia. these are also symptoms of lyme diseasse.

So, whats up now?   i am having more neurological problems very similar to those with MS. i have been given evoked potentials by my neuroligist and according to her it is not MS. it is sas though, how i was almost hoping it was. anything has to be better than this! at least they are trying to find a cure for MS. OK, I have also suffered from increased depression and anxiety and depression since the fall of last year. i live in ny and dont know if it connected to 9/11 or not, but what i have become, is not what i was. i still really try to keep busy, i do crafty stuff now. i paint anything thats not moving!! it has managed to help me keep my sanity. problem is, my emotions are very close to the edge so i am spending time alone with my crafts. this disease is ongoing and i have several appointmens with many new specialist over the next 2 months and i guess i just have to get used to that.   i cant believe its been so long since i have been here. hope you are well. and maybe got here by mistake!

Hi, Its August 2, 2002 and i had to updat the lymering logo so I thought i would update this part as well. The depression has passed. who knows why. nutty disease. my siezure meds were raised and that has helped. I was hospitized for IBS wich caused dehydration and this was while my doctor was out of town. figures. i found a support group on line and they gave me great advice. its increadable. i had no idea so many people suffered from IBS. anyway they gave me IV fluids and I am feeling better. My primary is back and thinks i may have colitis and says he was sorry i didnt call him because he would have ordered rocephin. oh well. doesnt matter, it would only have been for the hospital stay anyway.    at the begining of the month I did ten days of flaygl and has a terrible herx reaction. hot flashes, dizzy spells, july was the month from hell, or should i say another month from hell. the thing that really bothers me is that whenever I get that kind of reation from a new antibiotic, it means the spirokeete is still living in my blood streem, in my organs and soft tissue.. is still alive and well, while slowly distroying me.    so, in conclusion, i now have IBS or Colitis, i see a specialist next week. i also have a bladder that does not empty properly, i am on my third specialist. am going for in depth testing at the end of August. I see a neuroligist, because i have siezures and the bowel and bladder problems are related to the brain, but she cant do anything about them. and they all come back to the lyme disease and the fact that these little (insert your favorite word to discribe them here!) are in my brain tissue and everywhere else) i am trying to keep my spirits up. thats the best we can do. Its just a little harder than it sounds.

To those of you out there who have young children and jobs to care for, i would give you what ever extra strengh i had if i could, i dont know how you do it. and to the men who are responsble for you family. i pray for your quick recovery. but for us woman, we are hit hard. our tissues are fatty and thay hide there. So anyone reading this who has a spouse with lyme. please be patient. they are really sick. very weak. very ill. and they may be that way for a long time. this is the same soul you fell in love with, just the body is turning on her or him. and they need your support.        i'll   be   back

February 15, 2003
I am having a hard time with this web page stuff but i am trying. ok, i am back and i survived the summer from hell, i managed to get rocephin from the manufacture for free. Roche labs, supplied it. please if you need this drug you may qualify for it. ask your doctor to help you. i could not get the insurance company to pay for the pic line. it was a nightmare, they gave me such a hard time. not even worth the trouble. i learned how to inject the rocephen. it comes in powder form and you mix it with 4 grams of lidocain and inject 2 grams of the mixture into your hip muscle a day. that measures 1 gram of rocephen.

It is worth the pain, it is worth the agrivation it is worth the danger of hiting the sciatic nerve. i have had a marked improvement in all areas. i am still sick, if you read the above paragraphs i was close to dispare, but with the rocehpen i got throught the holidays successfully, many of my problems got better. my seizures are much better. but i have been doing 1 gram a day since november and i had my herxes, and just this week my blood pressure plumeted to 80/70 and i had to eat a lot of salt. and gatoraide. i was very week, but once i got the salt levels up that past. its a symptom of the chronic fatigue. so make sure you are allways hydrated and get enough sodium.

The injections are hard on the hip, they get kind of painful at times, i get sick of doing it, and i wonder what happens when i use it all up. what do i do then. its the best thing for this type of lyme, maybe the only thing, but what about our liver and my stomach that is shot. i cant answer those questions. but i am glad to report that i am felling better than i was in august. hope you are all doing well.

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Hey its December 2003, the injections work and i am rashioning them. tee hee. OK, summer was bad as usual. but i found out why this time. vitamin B12 deficiency. and a T3 thyroid problem (my hair is starting to fall out) this has been such a joy. lol.

So B12 shots . i am a pin coushin at this point. but they are so good. i did a full wee at first. and now i do it every other week. or when ever i feel miserable. same with the rocephen. i do a week at a time. usually once a month. i just dont want to run out. i dont know if i can get more.

oh, my neurologist doesnt recomend doing the injections in the hip. so i have been using a smaller needle, the ones i use for the B12 and injecting in the thigh (hurts like a mother) and in my arm (hurts even worse) so i am sticking with the thigh. she says the hip is to close to the sciatic nerve.

I have to see someone for the thyroid. i am so tired of trying to keep up with this disease. and keep ahead of it. i dont know what is going to go wrong next. sometimes i chase all the wrong ills.