I have had lyme since 2002. Undiagnosed for the first two years & untreated, last two years have been on biaxin & plaquenil. Haven't improved with the pain, etc. so I went to a neurologists to see what he thought because I also have pins & needles in hands & feet for two years and some thought MS. I went thru the dreaded spinal tap and yes, got the spinal tap headache, ouch! and the Brain/MRI. Neurologists tells me, I don't have MS, Lyme or anyother disease, but evidence of nerve damage and I should be happy that I don't have a disease and that I am in a box with many others that just go undiagnosed and he feels you just treat the symptoms without having been told you have a disease. So now the question is, do I go off the abx to see if it doesn't make a difference or do I risk the set back? I am on neurontin for pins & needles and so far hasn't done anything. On amantadine for fatigue and that has helped alot, and he gave me ativan for the muscle spasms/pain. Help!!!!
Posted by hiker53 (Member # 6046) on :
Are you seeing a LLMD? Perhaps a change in antibiotics might help. People respond in different ways to different ones. Have you been tested and treated for co-infections? Hiker
Posted by bartonella blues (Member # 9042) on :
Mammachase...I have followed a similar trail to your own..MRI,Spinal-taps and lots and lots of tests at the Mayo Clinic..Nothing really helped at all until I found LYME DOCTOR who knew all the coinfections and all the right tests to take..
My condition has been up and down and forever changing as do the list of symptoms.Babesia was one chapter for me and now I,m after Bartonella full-force.
YEs,there it alot of just symptom treatment without a clear trial. However I cannot express the importance of having a good Doctor as I said before.
To some degree, one must "go with the flow"of things..Erratic pain and lack of quality sleep are conditions of there own.
Be as strong as you can. Be as positive as you can.. but if you can do neither,try to remember that tomorrow should be different and maybe,just maybe even better. I send good warm thoughts your way.. Bartonella Blues.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by bartonella blues:....Nothing really helped at all until I found LYME DOCTOR who knew all the coinfections and all the right tests to take..
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Mammachase: If he's not an LLMD, he has NO CLUE as to whether or not you have LYME!!! If he's going by the spinal [and i'm sure he is] then he's delusional, as most neuros are.
Spinal taps find 20% of Lyme cases.
Find a dr who will keep on top of things and TREAT you for babesia and bartonella regardless of what any TEST says.
You have most likely plateaued on the abx meds you've been taking. There are others.
Just my $.02 worth!
[and welcome back! ]
Posted by seibertneurolyme (Member # 6416) on :
Anyone with any common sense should know that nerve damage does NOT just happen for no reason. That's just my opinion, but if a doc tells you that then I don't think much of his medical degree.
I would agree that 2 years seems like an awful long time on the same meds -- especially if they are not helping.
It's no fun finding a new doc, but I'm afraid it is time.
An LLMD is what you need. I sure wish hubby hadn't wasted 2 years on the 1st 13 neurologists -- but he did not have a diagnosis for the 1st 1 1/2 years and his symptoms were primarily neurological.
Good luck.
Bea Seibert
Posted by mammachase (Member # 5697) on :
Thanks everyone for the information. I am being treated by a LLMD, Dr. D on Cape Cod. I have asked him to test me and he said it wasn't necessary. He's never mentioned the co-infections, but I see him the last week of April and will bring this up to him. When you say co-infections what are the abx/meds that you take to treat that so I will have more info going in to see him. I have seen Dr. D for the two years. This neuro I just went to to see if he found something different because I was doubting I had lyme because of my not improving, but now I guess this neuro has confirmed that I must have lyme!!!!
Posted by lymie tony z (Member # 5130) on :
Momma Chase,
Spinals are no way to find LD...good to do I guess to rule out anything else...as are mri's cuz they're no good for LD either....
I had no success with taps either...except to convince the ducks that I was imagining my symptoms and I was'nt sick at all...hmmmmm
Neurontin,topiromate and other anti seizure meds did nothing for my pins and needle pain...if anything they increased pins and needles to become bee or wasp stings....
As far as the abx biaxin...some say it works well for them and others not so much...in any event you've probably plateued on it as previously suggested.
You will get nerve dammage with this disease but I think it is reversable in time and the correct abx to get after the disease that's causing the dammage.
The amantadine did nothing for me as far as fatigue is concerned...ya might want to try Mepron or something to get after possible babesia.
with zithromax.......
Talk it over with your llmd......zman good luck
Posted by seibertneurolyme (Member # 6416) on :
MammaChase,
Here is a good article to read that shows the overlap in symptoms between all these tickborne illnesses and how the symptoms change over time.
The following signs/symptoms may be present in those infected with Babesiosis: Fatigue* Arthralgias* Myalgia* Drenching sweats* Headaches* Emotional lability* Depression* Dark urine* Splenomegaly* Dizziness* Nausea and vomiting* Cough* Dyspnea* Fever* Chills* Hepatosplenomegaly* Jaundice* Malaise* Shortness of breath* Bleeding tendencies, bruising* Thrombocytopenia* Hemoglobinuria* Hyperesthesia* Pulmonary edema* Encephalopathy* Low to normal range leukocyte counts* Possible elevated levels of dehydrogenase, bilirubin, transaminase* Anorexia* Approximately 25%- 66% of Babesia patients are known to be co-infected with Lyme disease. These symptoms may continue for long periods of time, decrease, then return. A low Babesiosis titer (IgG) often indicates a chronic infection. An acute or current infection may show a higher reading on the IgM test initially. There are over 100 species of Babesia in the United States but only ONE or TWO species are currently checked by commercial labs.
Posted by Mathias (Member # 5298) on :
You are co-infected. Forget the neuro meds and get tested by an LLMD who believes in co-infections. It more common than not to be co-infected.
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