Wow a triple-whammy. Sheesh...no wonder you feel so horrible! So, is the doc going to keep you on your regular antibiotics or is he going to put you on new ones? Congrats on a positive blood test! There's light at the end of the tunnel!
You must be so relieved to finally have a solid answer. I would be curious to know what lab also, especially for the co-infections... I have never tested positive, but have symptoms of at least Babesia and Bartonella. Do you know if he uses a different lab for co's? I have been tested only at Igenex and only test positive for Lyme.
Hi All. Thanks so much for your feedback, support and interest.
I checked my credit card statement for the name of the lab. It appears as-
IMMUNOSCIENCES LAB, IN xxxxxxxxx CA
My next appt is not for another four weeks. The Doctors office said it is their practice never to discuss results over the phone but they made an exception in my case.
It is strange to feel good about the diagnosis of several diseases, but I feel thrilled. I don't think anyone but we here who have been searching for answers for so long really understand how wonderful it is to get these answers.
Jo, I did meet Maria for dinner. I was pretty shocked. I didn't know what to expect and had moments where I wasn't sure if I really was going to be able to follow through...but, she is adorable, she looks ten years younger then her age, she is fun and we both connected immediately. We had a really nice dinner and she felt brave enough to come to my condo so I could show her how it was decorated. Definite chemistry.
She's coming over on Wed night to watch a movie. I could definitely use the support and it's nice to have something to look forward to for a change.
I don't know how Dr. R plans to treat me at this point, but he will let me know during my next appt.
I have not had the PICC line inserted yet as the insurance company denied because Dr. R was treating based on my symptoms and the Western blot taken from last month which he viewed but did not keep a copy. Now that we have the results from his lab of choice, I should be receiving a call shortly about the PICC line.
I'll keep you all updated on anything new. I have been keeping up with my baths, but have been forced to use significant doses of xanax to sleep for four hours. Then I wake shaking and weak, take another dose of xanax with a granola bar and I'm able to get in another 3-4 hours...After that, I am not shaking and I can function. My psychiatrist is aware of the way I'm using the xanax and is very supportive.
About work, I have not heard anything...at this point, I have learned to accept it's not in my contol and just have to focus on beating these three infections.
Thanks again all.
I am both happy and sad to hear your test results. I recall when my WB came back CDC positive. I was angry and happy at the same time. Happy because FINALLY I had a label for my strange and worsening illness; angry because I knew there was going to be one helluva fight ahead of me.
I loved your post "Dear Mom". I replied so many times, but either I stated too little or I wrote for an hour and didn't feel it was appropriate to post a 2 or 3 pager about how much I relate.
I love that post because so very many times I simply want to tell someone what kind of day I had, or if I felt really sad and melancholy or if I did something brave and I needed a pat on the back with an "atta girl!".
Sometimes I write. I used to keep a journal but I don't think I could handle the handwriting. Now I keep an electronic journal but I lost it 3 weeks ago with a hard drive crash.
Sometimes I send myself emails, just because I feel the urge so strong to tell a story or curse someone out or I feel like begging for sympathy or I'm proud of something I did.
I am so happy to hear that you met a nice woman friend. I'd give my next 5 paychecks to meet a guy or girl friend who will stick with me.
I am struggling with an issue now where I feel that 99% of the people I ever met (and thought of as friends) turned out to be big phony's.
If I knew that a neighbor, old friend, new friend, brother, sister, parent, or even aquaintance was suffering with a long term illness - I'd never in a million years ignore them and distance myself!! I would do the opposite - I would call or stop by with groceries once in a while or give them support and lend a hand or a shoulder to cry on or just an ear to listen.
I feel so alone most of the time. Even my kids (my only social network at this time) are sick of hearing me talk about Lyme (I don't blame them though).
Remember I'm thinking of you!
I hope things with your new lady friend, your insurance company and your employer work out. With those test results in your hand, you know what you're up against and knowledge is power (as sleeper always says).
Try not to worry. When I worry, I remind myself that EVERYTHING depends on my health. I could lose my job, my insurance, my house, what ever. Once I get my health back, we'd be back in the money in no time at all.
Mickie, I think about you often too and have been wondering, where is six? Why hasn't she posted for so long?
Yes, a lot of my posts are long winded and I question myself if they are appropriate, but I really think they are because when you hear what you are feeling in someone elses words, you know what you are feeling is real. It is the epitome of insanity. Trying to figure out why such a horrific situation becomes upon us and why the answers are so construed.
Honestly, I understand why people distance themselves because without experiencing this for yourself, you have absolutely no idea how to relate and as a result it is human nature to deny.
We all go to school to learn about algebra, but there are no classes in compassion. It's a learned skill.
I was in such denile about my own illness that I still enlisted myself in the most physically grueling branch of service and still felt baffled as to why I couldn't keep up.
We just have to listen to what our body is trying to communicate to the brain...and we have to be unwilling to stop looking for the answer..because eventually if you tip toe, you'll find your way there..it just may take a little longer then sitting in a hiding spot without moving an inch.
Anyway, wish there was more I could do for you...Wish you were around the corner and I pray much more now, with more belief and more sincerity. I am not naive enough to think this is the end but I am learning things about myself that will send me in directions I could never have possibly reached. I believe that for us all. And when I get to the end, I am going to use that to do something positive for all of us in this mess.
Positive thoughts to you and everyone else in "our group",
Ticker, the PA did not specify if I have both types of Erlichia...I was just happy to get the info I received over the phone.
I won't know how the doc plans to continue until I see him in person again in NY in four weeks.
Right now I am taking Mepron, Zithromax, Artemesian..Mepron twice daily, one teaspoon and the other meds three times daily.
Tomorrow I have an appt with a local LLD, Dr. Katz. I have done quite a bit of researching on him. I'm going to make my own presentation, discuss the facts and dig deep for his disposition. If I feel a connection with him, then I will continue with Dr. R in New York and eventually work with Dr. Katz as a back up since he is covered on my plan.
The following day I have an appt with a neuro so I can work on the neurocognative functionality testing that Dr. R is asking for me to have done.
Apparently I need to first see the neuro tomorrow and will need another referral to a different neuro to get the test.
Still no word on the PICC line, I will give them until tomorrow or Friday before I start charging in about that.