Hello, I am new to this site and am looking for some help with my many weird symptoms. I have had the same lyme doctor for three years with very little improvement,in fact, I am worse.
It started about seven or eight years ago with a feeling of dizziness and then my balance was off. I would turn my head to fast and actually feel like I was going to fall over. I had a MRI at the time and it was negative and so I was referred to a ENT specialist. That was a total waste of time and money as they diagnosed me with Stiff Person Syndrom and started me on IVIG treatments for a year. The treatments did offer some terrific improvements as my head pressure and balance started to improve. I now know it was reducing the inflammation in my brain and the problem was never addressed as lyme. I just had another MRI done and this time it has written on the report of possible small vessel inflammation or ischemia.
I have been trying different antibiotics and they cause my legs to become very stiff and when I walk I become short of breath with a elevated heart rate. I can't hardly walk without feeling like I have to sit down as I look like a drunk person.
My question is, does these symptoms appear to be Bartonella or lyme related? I am not sure of what I have as an infection as it's effected my vascular system. I am so scared because it's getting worse and my lyme MD is not looking into it or offering any help.
Thank you all...
Posted by James1979 (Member # 31926) on :
Are you able to get an IgeneX test done, to see if you test positive for Lyme or coinfections?
Posted by bearlythere (Member # 31973) on :
How do I get this test? Is it only available through a lyme doctor?
I have had many western blots in the past and they are all negative. I did show two bands on the test and they were, 41 and 23.
I have not been tested for any co-infections. What are the recommended tests for these?
Thank you for your input.
Posted by tickssuck (Member # 15388) on :
If you go to Igenex.com they explain the testing. I believe for coinfections they recommend IFA anti-body testing. You can order a test kit for free, have your LLMD sign the requisition for the proper tests and get a draw at a lab, results would be sent to your doc. I am unsure of the cost of coinfection testing, you could call Igenex to find out or it will say on the requisition sheet when you get the test kit.
If your doc is not looking into coinfections, I would consider consulting another LL doc. Sorry for your symptoms, I understand completely; hope you feel better soon. Good luck. TS
Posted by Shahbah (Member # 28735) on :
bearlythere, how old are you? is it possible you also have hormonal issues, endometriosis, and also I have just learnt that nerves control venous constriction so when nerves are too tense, the blood vessels constrict and that may lead to blood vessels inflammation... but the real qustion then is what is it that causes the nerves to be so tense... (i guess that is wy they diagnosed you with stiffness... which is not a diagnosis!)
Posted by bearlythere (Member # 31973) on :
Shahbah, Thank you for your reply. I am 50 years old and it doesn't appear to be hormonal. I have read that sometimes in chronic lyme that it can cause vascular inflammation. I have strong herxes with the antibiotics and feel as though they are working on something. I also have horrible muscle pain with some weakness.
My new lyme doctor, who I will be seeing also is a Rheumotologist. It's so difficult to deal with this day in and day out. I only want to find out which infection or co-infection I have so I can get better.
About 8 years ago I remember getting bit by a tick in my thigh and developed a very small rash. I also felt like I had come down with a flu like illness that seemed to never have gone away.
I also have bouts of nausia in the morning and have been loosing weight. I'm frustrated to why my so callled llmd is not listening to me and doesn't do the proper testing. Posted by apljack (Member # 14233) on :
First I have ever heard of Stiff Person Syndrome.
What treatments have you tried?
Igenix testing can run from $190 to over $1000 depending on what you test for. Yes, you need a doctor to sign this and that's who they send results to. You may or may not be able to get your primary to do this.
You seem to have a lot going on. Some of the country's best LLMD's are in Maryland. A couple of them are really good, a couple them are trying really hard and are at least compassionate.
Good luck.
Posted by bearlythere (Member # 31973) on :
I was misdiagnosed with Stiff Persons Syndrome at the time. It was more like stiff neck and back muscles and extreme inflammation.
The doctors finally agreed they were wrong but were not sure of what was causing me to feel dizzy and faint and loosing by balance. That's when I realized this might be lyme.
Has anyone had a MRI show smalll white matter inflammation with their lyme diagnoses?
Thanks so much for help and support.
Posted by nspiker (Member # 22824) on :
You can order #188 and #189 from Igenex. That test is only $200.
Co-infection testing is very inaccurate. A good LLMD will treat based on symptoms.
Posted by tickssuck (Member # 15388) on :
My MRI said, "hyperintensities in the deep white matter." Is this white matter inflammation? I don't know.
It was written off to migraines, though I've never had a migraine in my life (thankfully), or to my age, I was 43 at the time of the MRI's. I obviously had a problem since I'd been to the ER with trouble walking (brain felt not connected to legs), hyperreflexia, body-wide muscle twitching, high BP, list goes on.
I too have a terrible stiff, painful neck, balance is off, numb tongue and face (at times). The usual Lyme laundry list....sigh. TS
Posted by TF (Member # 14183) on :
Regarding Igenex coinfection testing, go to www.igenex.com and read what they say at their home page.
Here is the paragraph about coinfection testing:
"We also offer tests for the common co-infections of Babesia, Ehrlichia - Anaplasma phagocytophila (HGE) or Human Monocytic Ehrlichia (HME), and Bartonella. These co-infections are seen in approximately 20% of the patients with Lyme disease. The usual first tests to order for the co-infections are IFA antibody tests: Babesia microti-#200, Ehrlichia: #203 Anaplasma phagocytophila (HGE) or #206 Human Monocytic Ehrlichia (HME), Bartonella - #285 and Babesia FISH-#640. In Northern California, Oregon and Washington State, #720 (Babesia duncani) is substituted for #200 for Babesia microti. A complete Panel has been established for the Midwest, Southern and Eastern Region (Panel 5090), and a Panel for the Western Region (Panel 5080). The FISH test (#640) is also included since it is a more sensitive indicator of Babesia infection, even in the absence of antibodies."
So, you would want the Eastern Region Panel--Panel 5090. It costs some money, but if you get any positives, you know for a fact that you have those coinfections.
I tested positive throug Igenex for babesiosis and bartonella. In fact, everyone in Maryland that I have ever met who had lyme disease (a lot of people) also had babs and bart. So, I believe that everyone in Maryland who has lyme has at least these 2 coinfections. That's why you can't make progress.
Until you treat every coinfection that you have, you can't even get rid of the lyme disease! These diseases all help each other to remain entrenched in the body.
I am concerned about your current lyme doc and the new one you are about to see. I would like you to get to one of the best lyme docs in Maryland and get rid of these diseases!
I sent you a private message telling you the names of some good docs who can get you well.
Posted by bearlythere (Member # 31973) on :
This lyme board is wonderful. I am so thankful to all who have posted and responed.
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