Hi, sorry I've been so quiet lately, I started a PICC line a month ago and have been very sick. But at least that means it's working!
My 3 yr old daughter had her LLMD appt a couple weeks ago since she tested positive for Lyme's Disease. We're certain she contracted it from me during pregnancy.
One of her bands that came back positive was 58. I asked her LLMD about it and he says he believes it's indicative of a protozoan infection (i.e. babesia). He's treating her for babesia just based upon that band coming back positive.
This month we're loading her up with vitamin C and also probiotics. Once the month is over, we'll start Biaxin. I really like her doctor b/c he takes a natural approach as well as conventional.
My son, was bit by a tick over the summer and had the EM rash. I took him to the dr immediately and they put him on abx. Long story short, the LLMD was able to get my son in the next day and gave us 6 weeks of abx. Everything has seemed fine since then but recently, my son was complaining of his arm hurting. I looked and his lymph nodes were swollen under his arm. Also, he's manifesting the psychiatric symptoms as well. I called his LLMD and he said to bring him in again.
I keep going on for my kids but I am so emotionally and physically tired! I need a vacation.
Hi KeyLyme, good to hear from you although I'm sorry you've been feeling so crappy. It totally stinks that with Lyme sometimes you have to feel worse before you feel better.
Hon, you are doing a lot, managing your illness and IV and taking care of your children to boot. That's a lot even for a healthy person, let alone a woman battling Lyme with two kids with Lyme.
I know it can seem impossible, but try not to do too much. If the dishes sit in the sink so you can rest, so be it. Forget the vacuuming and let the leaves rot on the lawn.
I'm a single mom of two and I had to reduce my life to the bare necessities in order to live with a long term illness and not have our lives screech to a halt.
I work full-time (till I got laid off a few weeks ago), pay the bills and that's about it. If my mums are dead in a pot on my front porch - well tough tatas. I can't bother with those things anymore.
I taught my kids to use my debit card so they can shop while I sit in my truck, they cook for themselves, clean up and do laundry. My kids are older than yours, but you catch my drift - I had to simplify.
I know you want to be the woman/mom you used to be, but right now you're sick and need to let go of the little stuff. When you're better, you'll jump right back in the saddle and get back to having fun with your kids.
I hope I didn't insult you with my words . I don't mean to imply that you're incompetent - just that you need to let the small stuff slide by. Stress and 'doing too much' can sometimes inhibit a Lyme patient's recovery and I don't want to see that happen to you.
I appreciate your words of encouragement. Anytime I feel like breaking, I try to think about how you still go on despite all of your terrible circumstances. You would be proud that I really don't care much how my house looks. I figure if people are going to judge me based on that then they can just go somewhere else. My husband is actually the hardest to deal w/. He says that he "understands" but then he still wants the house clean, clothes washed and his lunch made everyday. I really wish that he could spend a week in my shoes and REALLY feel what it's like to be me. Maybe then, he'd be more supportive and helpful.
Are you going to be on unemployment then? Did you work something out w/ COBRA?
My kids go to a General Practitioner in Kansas City. His wife and daughter contracted Lyme's and because of that, he has tried to learn all he can about the disease. He seems to know what he's talking about.
I haven't had a chance to talk to my LLMD about it b/c he's extremely busy and only does one initial visit (everything afterwards is done through written communication).
I didn't have band 58 positive and I'm pretty sure that I have babesia. So, who knows. I know testing for babesia is even less reliable than testing for Lyme's.
You have a good attitude, which helps tremendously. My attitude tends to be ... sucky.
Sorry your hubby isn't as understanding about the housework as he could be. I know it's an expense, but what if you guys discussed hiring a helper? My mom has someone come to her house to clean twice a month (scrub toilets and the tub, wash down the kitchen cabinets, vacuum, etc) and the cost is very reasonable.
Wish we were lived close by ... I'd love to help out. Do you have any girlfriends that would help out?
I'm on unemployment and I'm paying cash for the COBRA insurance. It's not as bad as I originally thought, $400 a month. I have one job prospect so far but if it does pan out, it won't start until after the new year. Keep your fingers crossed for me!
I'm so glad that your COBRA isn't insanely expensive. If I were you, I'd just ride the unemployment train for awhile. You need some rest.
That's great your Mom is able to come in and help you. I'm sure my mother in law would love to come help me out but it's literally like having Marie from "Everyone Loves Raymond" at my house. I just can't deal w/ it.
You are my very first post to this forum. I'm in KC and found out after 15 years of suffering with Fibro, Chronic Fatigue Syndrome and my now 11 year old little girl has endured gastrointestinal problems, I have Late Stage Lyme disease per Carol Ann Ryser LLMD in Grandview. I know my little girl contracted it from me in utero and breastfeeding and unfortunately, I can't afford to take her to Ryser as I'm already in dispute with KS Insurance for $8000 of denied claims under United Healthcare. (They have deemed a brain scan and all my diagnostic tests not medically necessary!) Anyway, I saw your posting and was excited about either Brooks or Brewer as I had just yesterday written Brewer's number down and was setting up an appt. Looks like it's worse than Ryser, 1 year wait! Both accept UHC and BCBS (my girl has a separate policy) and Brooks won't accept any new patients. I'm at wits end. I need help and I can't seem to find any LLMD's around here that can see her. It's so severe with my little girl that she has developed multiple food allergies per Dr. Jeremy Baptist and intestinal dysbiosis, memory and learning challenges (diagnosed as Developmental delays), double vision, and muscle weakness and stiff neck. We have paid literally thousands of $$$ for vision therapy you name it, but the core problem I'm convinced is the Lyme. Any suggestions for here in KC. Would Brooks new Associate be worth seeing? Probably not since she knows nothing of Lymes disease. I'm trying to be positive, but the Diflucan I'm on is working on my gut right now! I respect your opinion. Thanks for any words of wisdom. Worried Mom in KC
Sorry I haven't posted sooner. For some reason, I'm not receiving alerts when a new post is posted....argh. Yes, only Brewer and Brooks are the Lyme dr's in KC. I would just get on the waiting list for Brewer and see how it goes. It took me a year to get in but at least I got in. You also should ask them to put you on a list that will called if there's a cancellation...that's how I got in. Right now I'm on a PICC and it's really making the difference.
You're only other alternative is Dr. Jemsek in Wichita or Dr. Charles Crist in Springfield MO. It would be worth the trip to get you and your daughter better. Also, don't take any antibiotics for awhile before you get tested w/ Igenex...it will mess up your test results (as per Dr. Brewer).
If I don't respond, please don't take it personally...I'm having email troubles. Good luck.
Thanks Keylime. I had some computer challenges this week, but I am so thankful you got my message. I already had gotten on Brewer's list, suggested the cancellation concept and the lady taking the info down on the phone just said that there is no such thing given there are 100 people ahead of me on the wait list! So . . what is PICC? Given my last APPT. with Ryser, the LLMD in Grandview was 12/07/07, we had the preliminary *******, Quest results from earlier in Oct, then I paid $500 in November for Fry labs to confirm the spirochete western blot test which came up positive. They are so overcapacity in terms of patient load that the nurse kept insisting that a letter from Ryser could not go out to summarize my multiple diagnosis (she's been treating me since 8/28/07 for a litany of other immune disorders) because they needed me to get the Lyme testing. We come to find out they had lost it upon meeting 12/07. They finally recovered it at my insisting I had paid for it, but in the confusion I never saw the Igenex, CD 57 etc. In the one hour we met, the nurse handed me a FFP report with iodine reading levels?, but all I have copies of are Medical Diagnostic Labs run back on 8/28/07 stating Yersinia species by Western Blot Abnormal, IgA Alt Pos IgG Alt Pos. Two bands from 51, 44,41,37,35,33, 23 kD. I never saw a full Fry lab report, with checkmarks showing I had also the Igenex, CD57. Those tests were drawn in October while I had been on Ciprofloxacin. I am so frustrated with their system. She's supposedly really one of the best, but her staff sucks! Excuse my language! I went ahead and took my little girl to Jeremy Baptist for him to process the initial lab with ******* for the Lyme. We'll see. I pray for a miracle! Thanks for your support. I'm tired of paying thousands of $$ for tests and struggling to get their attention to get the right treatment. The Diflucan is helping, but that's hard on the liver! Pray and pray.
I don't know much about Ryser but I do know that she's being sued by multiple patients who spend tens of thousands of dollars w/ her and felt like they were scammed. But I don't know anything else then that.
I'm a little confused about your testing. So you did have a test through Igenex but you weren't able to get the test results? If Ryser is too "busy" to write you a letter then you just need to get copies of your tests for your records. Can you give me more details about your Western Blot. Exactly which bands were positive or equivical.
Did she run an ANA test to confirm your immune disorders? If not, how did she diagnose you?
A PICC line is a long way to say I'm getting IV antibiotics. Since I've had Lyme's for so long it's become chronic and neurological...the only way to help the neurologic symptoms is through IV.
I'm sorry that you'll have to wait for so long to see Dr. Brewer but at least you'll get in...eventually. Really the only way I can describe getting in so soon is that the Lord Jesus Christ made it possible.
I'm glad that your daughter is getting tested. Let me know when you get the test results.
I'm finally getting email notifications that I have received a respond to a post so hopefully it will keep working.
Thanks KeyLime, . . . love your PC name! I'm not sure I wanted to hear that about Ryser, for I believe she has been very forthright and extremely diligent as a physician, but I'm picking up all copies of missing labs on Monday. The confusion lies in the fact that the lab technician who drew my blood inhouse left her employ last month. I keep all records fastidiously, but so many tests have been run that we can't be sure if I had the Igenex, CD 57 actually drawn as they take a checklist marking off those tests that are not filed with Insurance and show that the patient pays a fixed amount of which I believe I paid. I'm on some serious meds and I have my daughter on the autistic spectrum keeping me busy with prealgebra and several hours of homework a night, so I've yet to verify my charge records back in October. Anyway, I pray for healing and the wisdom of the physicians treating myself and my daughter to kill this fungus/bacteria and maybe even the insurers to grasp the seriousness of this illness that permeates our bodies. Thank you for being open and honest and continued health to you with the PICC! I knew Brewer was a real gem and I can only pray and wait for his intervention. Kay in KC
I'm very happy to hear that you're going to go on an IV. It will really make a difference. Just keep in mind you're not going to feel so great the first week. I felt like I had the flu. Then every 3 weeks I get a herx.
I have been on the IV rocephin since last Monday, plus zithro and flagyl. I have not gotting sick or herxed, yet. Do you think this makes a difference. After reading your posts and others from the IV I was expecting it. However, I actually feel pretty good.