hi everybody!i just came from the russian doctor, here is my story... she sees peolpe from 5-8pm, is not by appointment, so i went at 3.30 to be the first one...the office was emty so i sat outside, my dad arrived at 4.30 pm, then at 4.50 4 other peolple came plus 8 of those peolple that gives medicines to doctors form the laboratories.. dont know how you call them, so at 6 pm i was in with my father.. she was an internist geriatric! she was very nice, and she told me she and her daughter had lyme, she got bitten i germany by a thick, and 6 months later she was very very sick, and she got tested in peru, in a special place and she tested positive right away.. so she start searching and got treated and felt great now..then her daugther got it... she is a doctor too..i dont know if she is good or bad, but at least knows more than any doctor here and had the disease, she told me she had seen 2 other peolple with lyme a german tourist that got in in peru, in the andes and an american that is now happy living in the states..she didnt give me any treatment yet since i am waiting for the co infections that will be ready by friday i guess..i told her about my tremors and and told her i was taking lexapro, wich is escitalopram oxalate, an antidepresive, and she told me to stop that, that that madicen was causing me more tremors..also she recomended to to the spect, wich i wasnt sure, i have an appointment for tomorrow morning but wasnt sure if was worth it, since is so expensive, and she told me to do it...she just geve me a medicine called celebrex 200 mg, wich is celocoxib, i guess is an antiinflamatory and medicine and prilosec until my co infections comes..so lets see what happen..finally my dad which never believed me and thought i was nuts, believes me now..so a little comforting that one person besides me thinks is not in my mind...have a good night and write tomorrow about my spect!!!
brid

brid:

I am happy to hear that you saw a doctor who understands about Lyme disease. I hope she will give you some medicine to start killing these critters. When do you go back to see her?

I am also happy to hear that you aren't seen as crazy anymore. My family still does not understand what I am going through.

You sound more cheery than you have before. :)

Good luck on the SPECT scan and let us know how it goes!

hi 6blues! hope you are doing good! i am still waiting for the co infections test to start treatment, hope i get the right treatment..i will let you know when i get my results by the end of the week, will see her as sooon as i have them..i am a little scare about the spect, i am chicken and i just freak when i get inyections with chemicals... lets see how it goes, thank you for your comment!!

Dear brid,

I am so glad you liked the doctor. Only time will tell if she knows what she is doing but you would think she does since she has had lyme herself. If it doesn't work out you always have Dr. Crist. I am also glad your Dad was with you so he can better understand the disease. For some reason it sounds more logical coming from a doctor. I know sometimes I will tell Ronnie (my husband) something and he doesn't hear or pay attention to and a few days later a "male" will say the same thing and it sounds like a good idea. I guess I just need some of Marsha's testosterone so I can speak with a lower voice. :D

I'm sure you are nervous about the spect scan (I have never had one) but most technicians try real hard to put us at ease. The dye they use will just feel warm when they inject it but you will pee it out of you within 24 hours I think. Keeping positive thoughts here for you.

Maureen

Hi Brid:

I am so glad you found someone in Peru who seems to know about lyme. Hopefully you will be on your way now to better health. Please let us know if you learn anything new from you Spect scan. Best wishes to you...

Frango

hi maureen! just got home from the spect.. took forever, they didnt have the quemical so i had to wait hours.. anyway, ll be ready by thursday..but is going to be read by a physichiatrist..hope he can read the amonia and the other important stuff.... also i tested positive for brucella, so now i am soo confuse.. maybe my igm was indeterminate and is a cross reaccion because i have brucella, or maybe i have both..the doctor that did the brucella test told me that test was very precise so no cross reaccion in the brucella, maybe in the igenex test.....soo confuse... i just have to wait for the igenex co infecciojn and see how to start, and how.. now with this brucella just gets more complicated...hope you are having a good day!
brid

Hi Brid,

That's great that you had the Spect done, good for you! Please ask for a copy of the results for yourself, you may need the results later on.

I believe I told you this before, maybe not. Brucella can be related to Bartonella which is a Lyme co-infection. Also remember that a good doctor will not rely on the IgeneX tests alone, but also by your symptoms.

Can you telephone IgeneX and ask them to test your blood for Bartonella?

Wishing you well!
Denise

hi denisse,glad the the spect is over.. i am having all the co infections done at igenex..the internist doctor i saw last friday told me also that brucella is related to bartonella, but if the bartonella is negative.. i will think i just have brucella and not lyme.. is that possible? anywas i think brucella is treated with doxy too, and doesnt go away... i just have a hard time finding someone to cure lyme, brucella and co infections..and dont know how good can be that russian doctor, like my dad says, at least he have seen 3 peolple with lyme, more than any doctor here..i hope that today that i quit the lexapro, my tremors reduce... until now.. i still have them, after how long of treatment did you start feeling better?

thank you soo much
brid

hi 6blues! long that..... sitll my dad is not that convice, but also doesnt think i am that crazy... but sitll, he thinks is easy, that since i am getting rsults, i will just take medicines and be great in a month... even i have print him so much information... doesnt understaind too well... o well... what can you do... just keep fighting...
thank care and thanks for thinking about me
brid

Brid
I am thinking of you too. Hope the spect gives you some information to work with. Like I told Teresa (daughter of my heart) that we all have our demons. Hers is from a chemical imbalance that messes with her head. Mine for all the little demons of lyme and the Co's. Doctors may say we're crazy but we know our own bodies. I may act crazy from the lyme but I am not crazy. There is a BIG difference. If we could just make our doctors understand. Let us hear when you get the co's back from igenex.
Prayers.....Marsha

hi Marsha, hope Teresa is doing better, was thinking about it today...i hope you feel better too and had a better day than yesterday..i know too what i feel in my head if from the demons of lyme..i hope we get rid of them sometime!!hope i will have more news by friday.. my father firends from missouri sent me a list of medicens i can take to give to whoever will treat me here.. but would like more choices, that list is very superficial and says 28 days of treatment and stuff like that i guess is information for peolple just bitten, not for someone with cronic lyme....
my preayer for you and Teresa!
Brid

Hi Brid...new To This Message Board...so Bare With Me....where Do You Live? In Russia? First Of All Don't Allow People To Get On You About How You Feel..from What I Have Learned Lyme Is A Cousin To Syphllis...it Can Cause All Kinds Of Stuff..mental And Physical...your Question About Iv's...they Are Called Pic-lines...no You Do Not Stay In The Hospital With Them...what Happens Is A Tube (small In Diemeter) Is Inserted Into Your Forarm...into A Vein...it Is Put Up Above Your Heart..inside Your Body..i Was Injecting Twice A Day With Antibiotics...you Do It Yourself..it Is Very, Very Easy...it Is Done This Way To Help Keep The Strain Off Of Your Liver And Kidneys...the First Round That I Did I Was On The Pic-line For 6 Or 7 Months...then You Go And Get Tested Right After To See What Your Titers Are...by Luck.. Ha..i Was Biten Again The Next Month And Got Sick Again..had Another Pic-line Put In .....had That One For 3 Or 4 Months...the Thing You Really Need To Watch With Pic-lines Is Staph Infection At The Insertion Sight In Your Arm...i Had One Get Very Infected On Me...so Have To Really Keep It Clean...i Was On Oral Antibiotics For 6 Years...i Also Know Two Other Young Ladies That Had Lyme Really Bad..and Did The Oral. When They Were Put On Pic-line They Were Cured ...it Takes Time!! But Seemed To Work Qucker Than Oral...you Need To Be On A Couple Of Antibiotics ..not Just One...i Have Been To A Few Lyme Doctors...you Need One To Break Open The Cell Around The Bacteria..and Another To Kill Off The Bacteria..they Also Use Flagyl At Different Intervales...everyone Is Different And Responds To Different Antibiotics..it Just All Depends On The Person...i Wish You Luck..and Hope I Have Helped Your Concern About The Pic-line...if You Can Afford It ...go With It!! God Bless...

hi gemini girl!! you go girl!! so happy for you you are feeling much better!!and your information really helped me a lot!!i am not in russia, in in peru,but know one nows about lyme, just this russian geriatric that she and her daughter had lyme , and 2 patiensts he saw here while visiting peru..al lest she knows more than the rest..si just gor lots of information about the disease and different treatments to give to the few doctors here i am plannig to see besides de russian , because she is retired and works in a small office so i think i will have to see a doctor at a hospital for the iv..i am just waiting on my co infeccions to get the right treatment.. did you have any co infeccions? i guess sionce you were on antibiotics for 6 years... you had it cronic... did all you symtims dissapear? or at lest the nasty ones? what are titers? sorry my english is not that great and there are some words i am not familiar..are the herxing worst with oral or iv?i would appreciete as much information i can get to i can teach doctors hereyou did the first pic 7 months every day? what were the sides effects? the iv goes with the oral?? sorry about so many questions.. thank you soooo much!!!!!!

hi marsha!! just thinking about you, how you were doing, how is teresa doing?? you are on my prayers..

Brid
Days here are still pretty rough, probably like yours. There is a good deal of info in Sept 2005 by Burrascano? Might help your doctors know how to treat you.

Thanks for asking about Teresa. She (by the Grace of God) survived with no major liver or kidney damage. She is being moved to a special hospital tomorrow. Probably be there for several months. Alot of therapy and medication monitoring.

Oh and they were able to save my picc line. Wasn't sure after the problems at the dr office Monday but x-ray showed its ok to use. Just can't let it come out any more.

I know your stress level is high waiting for the results. I pray you get them soon and can get started on the road to beating lyme. It is a long road, but we have to start to finish. After 6 months, I'm tired of this battle. But I fear it has just begun. I have 18 yrs and 3 co's that have definitely moved in with plans to stay. I just have to evict. and I will. Hang in there Brid.

Prayers.....Marsha

Hi Brid,

I know how impatient you are feeling, but just sitting here reading your story it sounds as though things are really moving ahead.

Your doctor might be geriatric, but she may be very wise too! It must help a lot if she has had the illness because she knows exactly what you are talking about. It is very difficult to explain some of the symptoms to people who don't understand.

I'm sure that your Dad doesn't think you are mad either - just wants to see you get better! He sounds very supportive.

It must be very difficult for our families not to be sceptical about lyme. If we didn't have it ourselves, we would probably think it all sounded a bit bizarre.

Hope you can start on treatment soon.

Keep up your determination

Janet

Hiya Brid
Your dad now belives i think most fantastic thing that can happen for anyone suffering is having company on the belief trail.

Waiting on tests.. well i linked it almost or if not worse than the worry of buying a house.


hope you are holding on there hun xx