posted
1 month ago I woke up w/head/neck pain severe. I remember a neck bit, spider I thought about 2 weeks prior. I am a healthly, thin, active women. Never had anything in my life, but kids. I keep testing negative, in hospital 2x's last time for 5 days. Finally after all test for everything else under the sun negative, including 4 mri's, which showed many white spots,my neuro. still thinks ms, no other ms signs. I am on 28 days iv rocephin. I faxed all my info to Dr. D. in Fal. a llmd. My 4 drs. may want me to stop iv at 14 days, and I feel like I am fighting for myself.I have this herx for about 4 hours after med. Pain in head still bad enough that I need pain med. still. Sorry this is so long, my 1st post. Thanks for any help.
Posts: 9 | From martha's vineyard. ma | Registered: Nov 2006
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hello Cynthia.
I'm sorry you have had such a terrible run in with what sounds like lyme!
You say you've been in contact with an LLMD -- and by the way, thanks for using only initials! Are you going to be able to go in and see him ASAP?
It's not surprising that your tests are negative. That is often the case. Did you know many people who get the actual bacteria cultured out of their EM rash continue to test negative in their blood? So that's one of the reasons no one should ever use a negative test to decide you don't have lyme.
While in hospital, did they do a spinal tap?
Lyme can cause truly severe headaches.
So can babesia, a co-infection. I mean headaches from he11!!! So please don't skip seeing an LLMD and getting thoroughly tested for these co-infections. You can't get better if you have them.
I would stay on the Rocephin the full month if possible. Try and cut carbs out of your diet, and add in probiotics and yogurt.
Hope you can get in with LLMD soon and on your way to feeling better. Please post often if we can help, and read up in the 'Newbie Links' above as much as you can take in!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
I'm moving my reply from your post in General to this thread:
You say you've been tested for everything else. Does that include coinfections like Babesiosis, Bartonella and mycoplasmas?
I'd suggest you delete the one in general since it's the same question. If you let us all work from the same spot it gets less confusing for everyone.
This way we know what other info has been delivered already and we can work together to try to help you.
I'm going to quote your pm to me here because I don't have answers that others might.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
quote: originally posted by MVCynthia:
Iwas tested for the 1 one you mnetioned but not the 2nd & 3rd. They wanted to do another spinal tap, but I was on the iv med. for 3 days at that point. I would like to be able to suggest to my dr. what futher testing may help. If you could tell me how the test is admin. and I don't know much about myoplasm? Thanks, Cynthia
I have Babesiosis, so I can speak from personal experience there. I tested negative for Bartonella but I believe it can cause nasty headaches as well. I haven't been tested for mycoplasmas but I think some of them can cause symptoms like that too, I'm not so sure.
I don't know about the testing for mycoplasmas. Maybe someone else can offer some more info here.
I'm sorry, I'm trying to be helpful but it seems like my brain's not cooperating with me very well today.
I hope the others can do better. Good Luck, I hope you get some answers soon.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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robi
Frequent Contributor (1K+ posts)
Member # 5547
Glad you have an LLMD. You must also be tested for co-infections. Since you are so early in this disease, you have a chance at cure. DO NOT let tem stop your abx. Co infection testing and treatment is also of primary importance. I am not a doc, but most of them are not well informed on Lyme. Id Dr. D yu are seeing is the one that doesn't treat co-infections I would find another LLMD ASAP. You only get one chance at getting this under control and cured ....... don't miss your chance or we will be seeing you around here for along time.
Please contact the Lyme support group on your area and get dr. reccomendations.
robi
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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Hope your are getting some relief from the herx's! Do the pain meds help your head?
My dd found that none of the traditional migraine and pain meds work for her. This year she's had two hospital visits 5 days and 3 days, 13 ER visits, 2 spinal taps, 2 MRI's, 2 CT's, 2 x-rays, 3 neuro's, Ped, Int Med, ENT, Cardio, Chiro, PT, and on and on ... Sounds like you have a similar list.
I threw all that in because our first llmd visit was last week She hasn't even started all her treatments, and already feels better! Llmd thinks she has Bartonella because she has had a migraine since January (amoung other symptoms). She did test positive for mycoplasma (after I asked for the Ped to test her). It is a blood test that does take a few days. I don't know about speciality labs for this one. She's had it before, but the pneumoniae strain. This time it is different!
However I think mycoplasma is easier to treat than some other TBI. Guess they all depend on what stage. Ketex is a new abx that says it targets mycoplasmas, but I think biaxin is good also.
Our llmd did not do the labs for Bartonella and Babeosia. (Though he thinks she has both also)One is very expensive and not reliable, and I think the other is less reliable if you've had it for awhile.
One thing I have heard on this board about how important co-infection diagnosis is that it actually matters what order you treat some of the TBI. It can mean the difference between getting somewhat better and being in remission.
Good Luck! Keep questioning!
MommaK
Posts: 242 | From Mississippi | Registered: Oct 2006
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