Previously I posted a ? on MRI findings being related to Lyme. My neurologist dicounted my beliefs that a Lyme infection was causing my problems and severe headaches, eyepain, fatigue and muscles cramps even though I was diagnosed with Lyme in 1996 and 2002 by tick bite and erythma migrans rash, and that I problably had migraines, MS or something related to natural aging. Well guess what two days after that appointment I went to a doctor who recently ran some tests for LYMe and yeah!!! the blood tests are CDC positive for Lyme. The C6 Lyme Peptide had a positive reading of 2.57. Anyone have any thoughts on that #? It seems pretty high to me. I showed that doctor the same MRI I took to the neurologist and he believes the findings are consistent with LYme. So finally after a long fight with many doctors I am being put back on abx. I am just so happy somebody finally got a positive blood tests to back up my beliefs. My gut feeling was indeed correct even though time and time again I was ridiculed for it. So how long do you think it will take to clear this up? Do you think oral abx can do the trick? I really want to avoid IV. I did IV before and I hated it, and besides oral always seem to help me in the past. Maybe I just wasn't on them enough
Posted by joalo (Member # 12752) on :
Up.
Posted by dmc (Member # 5102) on :
Just get to a LLMD. There are many oral combos.
Just happy you realized neuros are generally closed minded when it comes to Lyme & Tick diseases.
Best wishes on your journey to health.
Posted by jwick25 (Member # 15190) on :
Hello. So glad that you finally have some answers! That's a big part of the battle right there.
I am on oral antibiotics, and they are working for me. As dmc suggested, it would be a good idea to find a LLMD.
Best wishes to you!
Posted by MorningSong (Member # 19989) on :
What a relief that must be to have a positive lab come back validating what you have suspected all along.
I agree with others. Very important to see a good Lyme Literate doctor. Also since you prefer orals they would know which medications best penetrate the central nervous system and cross blood brain barrier.
Wishing you the best.
Posted by Lymetoo (Member # 743) on :
Orals worked for me! Good luck and be sure to hang around here for support and info!
Posted by chopper (Member # 24841) on :
I believe I am working with a Lyme literate doctor. He was recommended to me by someone on this sight. I have heard both good and bad comments about him, but so far I am happy with him.
What oral abx or combos of abx do any of you know or have experience with believed to cross the blood/brain barrier and in what doses?
Also, at the same time my other symptoms appeared, I also was found to have some type of ovarian cysts, that has stayed the same over several of the past months. Surgery to remove it has been recommended, but we are in a watchful waiting mode right now. Do you think it might go away or at least decrease in size with the abx treatment for Lyme? Anyone have any experience with this? I really would like to avoid surgery if it is not necessary, and I am being hopeful on this. It might be totally unrelated to LYme, but then again who knows, I was told the headaches and other symptoms weren't related to lyme too, but turns out they are.
Posted by Pinelady (Member # 18524) on :
Chopper my ovaries hurt bad before treatment.
Now is is almost gone...
Prayers for a easy road in treatment.
Posted by chopper (Member # 24841) on :
Pinelady do you know what type of ovarian cysts you had that seemed to improve with treatment? I may be just imagining it, but the pelvic pain I was having seems to have decreased some since I started the abx a few days ago. I am schedule for and ultrasound on the cyst in about a week, so it will be interesting to see if there are any changes. Also I noticed your diagnosis was neuroborrreliosis. Did/do you experience severe headaches? If so, do they improve/go away when on abx? Which abx helped you the most
Posted by Pinelady (Member # 18524) on :
Doxy helped me the most. But it also made me the sickest.
It is hard to describe which meds help the most....because you are usually so sick when you start any----if you get a response you are going to get sicker...IMO.
No I had a few headaches. But bone pain at times was severe. And peripheral neuropathy.
There was not much that did not hurt. A hug hurt.
Posted by dsiebenh (Member # 5353) on :
My first MRI in 1999 said "MS or other demylenating disease", the 2nd improved MRI in 2008 said "MS or Lyme". It depends on the radiologist who reads it.
Posted by chopper (Member # 24841) on :
Pinelady, so sorry to hear you had so much wide spread pain. I mainly only have severe headaches and neck muscle cramps along with fatigue and recently the pelvic discomfort with the ovarian cyst, so I guess maybe I am lucky in comparison to others. I experienced peripheral neuropathy in several years ago when diagnosed with Lyme in 2002, but that went away after IV Rochepin as retreatment for that infection in I believe 2004(yep it took me that long to convince someone to retreat me, that the 30 days of oral doxy may not have cleared that infection) I am on z-max now, and the fatigue was much better for a 2-3 days, but the past two days I have again experience some headaches, eye pain and fatigue, but not near as bad as in the past. Is this a herx? Maybe. A switch to doxy might make sense to me once the sunny months are over ( I spend a lot of time at the beach). Anyway hopefully I am on the road to recovery.
Posted by chopper (Member # 24841) on :
dsiebenh My current MRI listed complicated migraine, microvascular disease, or less likely, early manifestation of Lyme disease, demylinating disease or collagen vasular disease as differential considerations for white matter showing in the left frontal subcortex. While the neurologist that reviewed this discounted the Lyme and gave me prescriptions Elavil, naproxin and Maxalt for migraines, since I just received a CDC positive blood test for IGM reactive Lyme disease, I tend to believe it is a Lyme infection causing the problems. Actually, I hope it is, as I believe it is more treatable/curable than the others if handled correctly. At least the radiologist that read it included Lyme as a possibility to be looked at.