Hi. I haven't posted or visited in a while and have a question about my cd57 test. It came back 59. It wasn't done at labcorp but at quest instead. 1) are the tests done at quest reliable? 2) what...
ok- so i am almost 3 months off all abx and antimalarials and on limited cowden herbs only-samento and cumanda. yesterday morning i had flashing lights for at least 10 minutes, maybe 15. at first i...
Kim, My private e mail is labrons@maine.rr.com I'm glad to hear you won't give up. I can't imagine that practice abandoning you. Even with the IV rocephin, it can take months to turn a corner to...
Kim, I don't understand why they would cut you loose- did JF say something about that? What about a consultation with Dr. H? It seems like many people need to do the IV for a year and more- often...
Hi Kim, Good to hear from you though sorry to hear you're still struggling with severe fatigue with the rocephin. How long have you been on it? Did you get your PICC line changed? I remember you were...
Kim, Good luck with the PICC tomorrow. My husband's original PICC started oozing and leaking after less than 2 months so he had to have it pulled but had it replaced the next day in the other arm. I...
http://health.groups.yahoo.com/group/MaineLymeDisease that's the link. i can give you some names of docs in southern maine....
Hi Lost, I live in Maine. There is a great support network for Maine Lyme Disease on Yahoo groups. They can help steer you to doctors depending on where in the state you are. Where are you? Maybe I...
Kim- Your story from the beginning sounds so similar to my husbands! I appreciate your support through all this. He also didn't experience improvement on months of oral abx or bicillin shots. It was...
Kim, I've been thinking of you and wondering how you were doing. I hope you were able to have a nice xmas with your sons home. We also had both our grown kids home for xmas which was really...
Kim- great to hear that you are already responding to the Rocephin. Dr. H didn't indicate how long my husband will be on the Rocephin yet it seems like he'll be on it a long time. His PICC line...
Hi Kim, My husband's appointment with Dr. H was on the day of the ice storm and it was freezing rain in Dutchess County too. the appointment was really helpful in looking at improvement in his body...
my first symptoms were anxiety and panic attacks. i would wake up in the morning with dread and panic. little things would set off panic. next at some point came a bright red oval rash, muscle and...
I'm an LCSW. I have lyme, my husband has late stage chronic lyme, I have some clients with late stage chronic lyme and colleagues in my peer supervision group who have lyme disease. A colleague and I...
Igenex doesn't deal with insurance claims but you can often get reimbursed (we did) by your insurance company by submitting the bill yourself to your insurance. Igenex will give you a copy of your...
jelainep- what was the duration each time you were you on IV abx? did it hold, did you slip back?...
Kim, Great that you'll be starting the Rocephin, finally, in a couple of days. The stress of pleading and dealing with getting tx is enough to aggrevate illness- glad you got things in place. Are you...
we pay $600 a month out of pocket now for rocephin and all the supplies through infuserve. I think length of illness has a lot to do with how long it takes to recover. i know someone well who is...
My husband and I both have had lyme disease also, though I just completed 7 months of abx and caught it fairly early and have been off abx for a month now. My husband has been ill for years. The...
my empathy to you- your situation sounds similar to my husband who has been ill over 20 years, diagnosed with CFS until 1/08 when he was tested for lyme. he tested IGM CDC positive yet IGG negataive...
I truly appreciate all the posts on this topic and how confusing it is to figure out the best treatment approach. It seems like pulsing the abx can be a helpful option and one we can talk with the...
Is there a lyme literate doctor near you in Germany? How long has she been on antibiotics and how long between the bite and her treatment? Does her doctor know how to treat lyme disease? It is so...
Kim- thanks for writing back. My husband too sometimes can't read and used to be able to work before the abx and wonder also if the abx has stirred it all up. If there is so much bacteria though, I...
Hi. It's been a few days before I could write, discouraged by losing our insurance appeal for continued IV rocephin, questioning kids and husband not getting better. Kim(kpt812), my husband's...
This is an interesting article and I too am curious about what others say. Although my husband who has been ill with chronic fatigue for 20 years tested CDC positive on the IGM, he tested negative on...
feeling discouraged and wondering what others' experiences are who have been ill for many years before stating abx for lyme. my husband was diagnosed 20 years ago with Chronic Fatigue. Most likely...
Hi Kim, Just wondering how you're doing. I hope things are coming together with your Port and antibiotics. Your fatigue seems debilitating like my husband's fatigue, and I hope the new treatment...
Hi Kim, How are things going with getting things lined up for the rocephin, zith and port? Am wondering about the prescription plan that you referred to- does it cover the rocephin? Insurance just...
Hi Kim, Excellent to hear how well your appointment with John went! That's great that you'll be going back on rocephin as well as lV zithromax. How do they decide how long tx will be for? Just...
Kim, How did your appointment with John and Dr. H go today? Rocephin or other tx? Hope you're doing well and am interested in how you're doing. Leslie...
Kim, Sorry to hear how far you've slid backwards since stopping the rocephin. The bicillin didn't help my husband either- and he was on bicillin for about 4 months. Even though he is majorly fatigued...
Hi Kim! Thanks for checking in. We had a good appointment with John. Dr. H wasn't in the day we went last week. I've been feeling better for the last month or 2 (especially since adding 20mg cymbalta...
hezzer..keep faith that you're going to be ok. i developed an intense case of disseminated lyme that came on pretty quickly about 14 months ago and it took nearly 3 months to get on abx prescribed by...
i use .5 to 1 mg clonopin and either lunesta or simply sleep...
thanks for your suggestions on the other post- we need to order the VSL3. Dr. H had given us the website but we hadn't gotten it yet. just got back from whole foods with a heavy duty probiotic....
hi kim, Bowdoin is a great school! My niece graduated from Bowdoin in '07. I just had dinner in Brunswick with friends this week! Great that you have a really good doctor to work with near you as...
my husband started iv rocephin 2 days ago and developed significant diarrhea today (day 3). any suggestions? our doc recommended VSL3 which we need to order, but in the meantime does anyone have any...
Hi KTP- it's good to hear from you. I'm in the state next door- Maine. Sorry you have to wait till mid November. I remember your saying many times that rocephin is the one tx that really made a...
hi! i saw your posting on another topic and wanted to say hello and that i hope you get your rocephin soon! it took a month to get all the ducks in a row with insurance, doctors, picc line- but my...
Hi rosesinjanuary, http://www.mentalhealthandillness.com/lymeframes.html above is a link to a neuropsych evaluation that Dr. Robert Bransfield uses for neuropsychiatric lyme disease. He and Brian...
as of a month ago, he wasn't accepting new patients........
hello! i was thinking of posting on this subject of menopause and lyme....i can't tell what's what. i'm 52 and started getting erratic periods when I got lyme Sept. 07. Didn't have one for 3 months,...
thank you soooooo much for your time and feedback phsinvent!!!!! i appreciate the information and knowledge you provided. I better understand and feel more confident about my treatment and also have...
thanks for answering, phsinvent. i tolerated the levaquin well- no tendon pain. i had a 5 day herx of overall body muscle aches and fatigue 3 weeks into it. i stopped because that doc gave me a...
this is excellent. thanks for posting!...
phsvincent, you seem to be knowledgeable about abx and called clindamycin an "old school" abx to combine with quinine for antimalarial tx. so, now i'm worried. hoping to get off abx within a couple...
my llmd put me on a combination of clidamycin, zithromax, plaquenil and mepron. this is for lyme, babesia and i had also tested positive for toxaplasma. i have done very well on clindamycin. i did go...
i also tested positive for babesia with a mild titer- but my llmd said that babesia often doesn't show up in bloodwork, so the fact that i tested positive was significant. i was given mepron along...