I have my LLMD appt. on Wed., but today I went to a follow-up nuero. I go to the VA so I saw a differnt Nuero. today. I explained everything again. I really wasn't expecting anythng today, so I kind of stuck to the problems with my head and fatigue. Floaters, ringing in ears, dizziness, headaches, ect. The last appt. with the nuero at VA told me after I went over EVERY lyme symptom that I should be lying in a hospital bed dying with all those symptoms. So today I kept it a lot more simple.
One good thing is he did order a B-12 test. I actually hadn't had that done yet. Is B-12 something Lyme Drs. check? Do people with lyme have unusual levels? Any info would be great. Thanks, mc
Good Morning, Dr. BURRASCANO describes B-12 deficiency as a collateral condition in Lyme Disease in his Guideline article. B-12 deficiency symptoms are very similar to those of Lyme, especially the neurological symptoms. Some doctors may settle for a B-12 deficency diagnosis rather than pursue the Lyme diagnosis.But it could be both! I hope this helps.
The LLMD app. went really well. The doctor is about 1 hr. away, so not to bad. Based on my IgeneX test, symptoms, and brain mri, he thinks I DO have lyme. That is great news for me because finally an answer.
I go to the VA so I don't have regular insurance. Financially it's going to be a struggle. At least until I start to feel a little better and can get back to work. My family is great and are helping. They know me so when I tell THEM there is something really wrong with me they know there really is. To bad doctors don't believe me.
Anyway, it was great to talk with a doctor that doesn't think I'm crazy. Right now I don't have money for a picc line. Wish I did because he would have done that. Right now he's going to put me on really high doses of doxy and septra. Price wise it's what I can afford. I'm just happy to be starting something. I will be interested to see what happens. 2 times in the past I was on very low doses of doxy and had some strange things happen. Looking back maybe they were slight herx. reactions. I have "arthritis" in my neck and one doc at an ER visit for my head problems said I had a sinus infection and put me on doxy. Well I never complained of a sinus infection, or thought I had one, but the doxy seemed to help my neck. I think it was killing whatever is eating away at my neck.
LLMD wants to test me for co-infections because he thinks I may have some.
As soon as I can afford that I will.
It's just such a relief to get some help. He also talked about everything I hear on these boards about yeast, diet, ect. My next app. is the middle or Nov. I'll talk to you later.
It went well. Like I said if I could afford a picc he would have done that. I went to get the px filled and the pharm. was a little worried. I didn't think he was going to fill it. He had to call, I think CDC, someone to ask more questions. Eventually he did fill it. Thank god.
That doctor is a nice man. I took my 20 yr. old daughter with me. She had an interesting time. She took his dog for a walk because we were there 2 1/2 hrs. When we left I told her "see honey I always take you to interesting places". She was not use to seeing a doctor work out of his house. I told her when I was a kid lots of doctors worked out of their houses.
How are you feeling? The food restrictions are going to be difficult. How are you doing with that? What kind of stuff are you eating? Any good snak items you've found? Take care thanks for asking how it went. mc
I am also very pleased that your Lyme appointment went so well. Do you mind repeating what your brain MRI results were. Did they find anything abnormal or was the doc relying on all of your neurological symptoms to help diagnose you with Lyme?
I can't find a copy of my mri right now. But it was something to the effect of a few "non-specific" foci in the white matter. something about T something sensitivity. Through my research to me non specific really means: They don't know what it is. Nuero. doc said they were not in the same spot as you would see with MS. They tried to convince me it's "normal" but I know it has to do with lyme. I also had a CT of the head and they noted an "enlarged ventricle". They try to tell me that's normal also. They said it's probably a "birth defect".
Any way when the lyme doctor look he said it's consistant with what you find in people with lyme. He said it's possible to see that in normal people, but it also shows up in people with lyme.
Do you have spots in you white matter? Are the docs telling you it's "normal"?
It's so frustrating to know it's not normal and they tell you it is.
Have you had an mri? mc
I have somthing to do with calcification which isn't normal for someone my age. Bilaterial globus pallidus and right caudate and putamen calcifications. So far they haven't found a cause for it but ruled out common causes like parathyroidism problems and high blood pressure.
Just trying to figure out what is going on as I too have a lot of symptoms especially neurological.
You know grace I had a ct of my head in 2003, in the ER, that said "nonspecific left posterior temporal calcification. Possibibly representing calcified choroid plexus. On the mri I just had done there is no mention of that. So I don't know but something is going on. Good luck mc
Thanks Mc. Very interesting indeed. Jojo and I have been trying to figure out the connection between Lyme and brain abnormalities/neurological symptoms. I haven't been officially diagnosed with Lyme but am thinking it is a strong possibility and it would explain a lot.