IWillGetWell is right. If you can find a LLMD, do. I had to drive 5 hrs to NC to find one. The test was done in SC which said I had Lymes (and other things). However, had I lived in NC; it would have read I DID NOT have it. Aren't we in the same Country? SC had a SC Doc that went to jail for Hydrogen Peroxide Oxygen IV therapy, because a lady died. What they don't realize is people who came to him were desperate. Now no docs here want to even acknowledge it. Probably because there's now big drug company backing a "new fix". So, I recently found a study at Univ of SC linking Lyme to infection in brain causing signals to misfire. It was written by an infectious disease doc and I've got an apt with him in progress...maybe he knows some cutting edge answers.
IWillGtWell, Please share what treatment you had and what things works for you. I really need to begin functioning.
Wishing you all lots of good days....in a row.
Tammy in SC
Hey again, reading everything again, and with doctors thinking its possibly autoimmune have they done a Spinal Tap on you? The fluid which is called CSF, circulates from around your brain through your spinal cord and back to your brain. It circulates like the water does in car from your radiator through the motor and back through the radiator. There is a lot of information in the CSF that would not be in other testing. It may be worth a try if they have tried everything else. Just a thought. Hope your feeling better. Please keep us posted.
Yep, how could I forget my ole' pal candidia. I had to stop the lymes treatment twice because of her. And once because of paracites....
A no yeast diet, and probiotics is real important, especially when you're on antibiotics for Lyme if you wind up having it.
Thanks for the spinal tap info. What specialist did you go to to ask for that. It's very aggrevating to have to go so many different specialists to figure out'/test all the things individually.
Wishing you all lots of good days....in a row.
Tammy in SC
Went into the hospital at the end of May because I just began falling. At first I thought it was just something to do with my Migraines, you know like an imbalance. Well, I never got the headache, then on the 3rd day I thought well maybe I had a stroke, if I did its a little late to make that an emergency. 4th day I was leaning on a wall near a doorway and have no clue how I fell completely through the doorway. So by the 6th day, yea I know the 6th day I called my neurololgist and he told me to go to the ER. ER ran a CT and admittted me, the MRI showed a lot of damage on my brain. A week or so worth of testing, blood, heart, lungs who knows, everything showed negative. They then gave me the Spinal Tap. Well the Spinal tap showed what they call bands, 4 of them, which are seen in patients with MS. So they ran more tests to exclude anything else, then did open head surgery and performed a brain biopsy. They ran some tests here on a few of the samples and then sent the rest to Johns Hopkins to confirm my MS. So yes I have Multiple Sclerosis among other illnesses. But had they not done the spinal tap, the conclusion and need for confirmation would never have happened. MS is an autoimmune disease. There is no cure. There are disease modifying drugs to prevent further damage or relapses, but there are many autoimmune diseases that can be discovered by simply running a spinal tap and running the tests necessary on the CSF.
Hope that helps with the understandin and why I suggested it.
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Thanks, the thing is that they would never had truly been led to MS without the lesions in my brain. Thats not true for everyone. My life and the work I have done including a 60 - 100 hour week work schedule. All of my problems had an expaination up until the leisons. Then the Spinal Tap was so important in the diagnosis. really, I felt like I was on an episode of House. I had 4 doctors of different specialties and it just became a process of elimination. I mean it was to funny when they were explaining the brain surgery and I started giggling and told them they were straight I do watch House. I did know the risks. I also knew its importance. Its just amazing what they learn from fluid in the brain. Without that test we could still be wondering or just thinking its MS with no confirmation.
I scheduled an appointment with my ENT early next week to discuss my negative allergy results. I'm going to fill him in on the fact that 3-4 various doctors now think I should be looking at autoimmune and see if he would want to order some tests or help me find someone who can. I had mono back in high school so I'm not sure if checking for EBV would be beneficial, but looking into other tests such as CRP, ANA, maybe some specific anti-bodies outside of RA Factor and thyroid anti-bodies.
I have not had a spinal tap and I don't think any doctor would want to perform one simply because I don't "look that sick." I don't blame them, I would rather look into blood work first and go from there. She hasn't continued investigating blood work because my Sed rate was normal back in August. She had said that if it was off, she would have continued testing. Is it possible for something to be wrong even though ESR is normal?
Also, my dentist, whose daughter has an autoimmune disease, mentioned that I should watch my symptoms during menstruation. He said many autoimmune symptoms flare up during menstruation, so joint pain and other complications can become worse. I was on birth control pills for the past two years, wondering if being on that would have mitigated flare-ups (if it is autoimmune)? I have only menstruated once since stopping the birth control and am due again in a few days but I definitely noticed a huge change last month. Very, very heavy flow, very uncomfortable cramping, body aching like I had the flu. Reminded me of how I felt early in high school before going on birth control. I was on it for a few years, stopped for a year and then took it again up until a couple of months ago. I don't remember having this issue during that year that I stopped it before.
Last edited by fidelis7; 10-26-2011 at 06:09 PM.
Reason: Forgot to add something.
Another random thing, most likely not related at all. I have had one plantar wart on the heel of my foot for over 2 years. It's probably about a 1/4 inch across. I've tried home remedies on it over and over and it hasn't gone away. It hasn't spread at all, but it hasn't gone away.
Please keep us posted. As far as the plantars wart all the home remedies will likely never get rid of it. The more you fool with it with the home remedies the deeper it will grow though. I had 3 of them. The first time I went to have them removed was old school, they stuck a needle in your foot to numb it, and no that was worse than having a baby, then they burned it with acid and hoped they got it all. Not fun. The second time it was an all new procedure they froze them, the next day it looked like a blister and you popped it and they were gone. Absolutely amazing and painless for me. Good luck but really please let us know if possibly what your outcomes are and how your doing your experiences will always be educating to others. If you need us just for a pep talk we are for that also
Well, I have some updates. My ENT ordered tests for Rheumatoid and ANA, both have come back negative. I also went ahead and got my thyroid labs completed, even though I don't see my Endo for another couple of weeks. My Free T4 is 0.88 ng/dl (range 0.5-1.6), and TSH 1.58. This is actually a little lower than it was before decreasing my levothyroxine dosage and stopping birth control pills. Both thyroid antibodies are also negative, so nothing leads to autoimmune issues.
I have been feeling okay lately, not great, but okay. My eyes are starting to blur again though and my ENT can only think of trying tubes to see if that helps my ears. As I have said in the ENT forum on here though, he is hesitant about it (and so am I) because of my already hypersensitive hearing. He put a scope up my nose again to see how everything is looking and nothing has changed. Everything looks fine until he gets to the opening of my eustachian tubes; this area has consistently been red and inflamed. He looks down into my throat and vocal chords too, which he says looks fine. All he can think is that something is getting into my nasal passage that irritates my eustachian tubes. I'm just not sure how surgical tubes will fix the issue.. if anything it'll just bypass it for a little while.
So good news: most likely not autoimmune.
Bad news: dead ends.
Sounds like your thyroid medication may still be too high.
When mine was too high I had many of the same symptoms.
If you are only subclinical hypo,you may not even really need the
levothyroxine at all.
I was subclinical at 5.6 and was put on 50mg of levothyroxine,and I felt AWFUL.As soon as I came off it I felt so much better.
Sometimes certain things can make you TSH raise or lower but that does not always mean you need to be on hormone.
For me taking melatonin was the cause of my thyroid levels being off.
Last edited by WhenItRains; 11-16-2011 at 10:01 PM.