kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
Well, I'm back in the Lyme world. I knew I had it, or more to the point, I always suspected it when my daughter was diagnosed, but we didn't have the resources to worry about me at the time.
My DD is now off on her own and married. My latest illness prompted me to finally get tested. To say I've had a horrible year of stress is quite the understatement.One year ago my mother was at home on hospice care, I was working full time and taking care of my mom. I got a case of shingles in my face and head. My mom died at the end of October, my dad had a stroke in December, and then I got shingles again right after that. Then I had a minor surgery on my tongue in which they must have nicked a tori that I had on my gum. Three weeks later I had another oral surgery to remove that. From that point on I have been in horrible pain on my left side of face.
I was then diagnosed with trigeminal neuraglia. Now they have also diagnosed me with post herpetic neuralgia as well as the TN. I am taking meds for it but I still have pain.
I have dealt with interstital cystitis for years. I have been diagnosed with fibromyalgia. I have been having severe depression and anxiety.
Anyway, all of my test are in and I have Lyme, Babesia duncani, and Bartonella. My EBV titers are thru the roof. My ANA titers are high. My CD-57 is super low.
It's one thing to suspect it. It's quite another to have it all staring you directly in the face knowing what this means. I watched my child go thru treatment for five long years.
I was prepared to have surgery for my TN because the neurosurgeon thinks he can help me. Now I just think that if I can get all of this horrible inflammation under control, my TN pain might get better. I am not really keen on having someone cut into my brain to begin with. IF I can relieve the pain without surgery I am all for it.
My thoughts are just all over the place.
FYI-I had symptoms before I ever got pregnant so this infection has been around for about 25 years. I'm sure that my daughter was infected in utero and then everything got really bad for her once she got a tick bite at age 4. She was diagnosed at age 12.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
I have my follow up with my LLMD in November. I am on his cancellation list to try and get in sooner. I am NOT ready for this.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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posted
Aww, I'm so sorry you're going through all of this. You sound like a wonderful mother and daughter. Now it is time to take care of you <3
The bright side is that now you are armed with the knowledge of LLMDs, the right medicines and supplements, etc, so you are on the right track to getting better.
To reduce inflammation, it's important to have an alkaline, sugar-free diet.
Bartonella caused me to get Interstital Cystitis and the medicine Elmiron has healed my bladder. Ask your urologist about it. Also, diet plays a huge role in IC. Don't eat acidic, citrus, or spicy foods because they will really upset your bladder. An alkaline, anti-inflammatory diet is key. This diet will also help you generally with the inflammation in the rest of your body. When your bladder is bothering you, eat raw pumpkin seeds and drink aloe vera juice. Aloe vera can also be taken in supplement form. Marshmellow Root supplements are also great for IC
While you're waiting for your LLMD appointment, you can take Cat's Claw supplements and take 2 tablespoons of pure colloidal silver twice a day. Both are antibacterial.
Since you might be starting antibiotics soon, you might want to start taking probiotics now
Best wishes <3
Posts: 241 | From New Jersey | Registered: Jan 2015
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Welcome back to Lymenet kidsgotlyme
You have unselfishly given yourself to others. Time for you to focus on YOU.
Half of the battle is over. You KNOW what's happening in your body AND you have a LLMD to treat you. Plus you have first-hand knowledge about TBI's and have SEEN wellness achieved. Knowing what you know puts you in a better position than most Lyme sufferers.
You deserve a happy and healthy life. One without constant pain, anxiety, doctors. . .
Grab the bull by the horns. You can definitely do this ! 💚
Posts: 2977 | From Florida | Registered: Nov 2016
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
Sorry to know about that 'relapse'...
When I read what you suffer - herpes, neuralgia, EBV, Babs duncani, cystitis, high inflammation.... - the first thing that comes to my mind is liposomal Vit C and Sodium ascorbate.
I don't think cystitis can survive multiple small doses of sodium ascorbate (buffered vit c), and certainly, almost no virus resist to liposomal Vit C, if taken in greater amounts, at least in acute form (I mean, acute viral infections).
For chronic cases, it may take longer though.
Since I started on Lipo C, I keep wondering if my life would have been different had I known about it during the time lyme was active.
Once you load your body with S.ascorbate, you'll piss it off in great amounts, and because of that, it has very good chances to affect directly what is causing IC.
Babesia always causes depression. It's not only your life causing that. Hopefully you'll get to see your doctor before! Meanwhile, just hang on!!!
wonderful to know your little daughter is now grown up and married, and you CERTAINLY deserve great part of the credit for that!
Posts: 6199 | From Brussels | Registered: Oct 2007
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
quote: I don't think cystitis can survive multiple small doses of sodium ascorbate (buffered vit c), and certainly, almost no virus resist to liposomal Vit C, if taken in greater amounts, at least in acute form (I mean, acute viral infections).
I have had IC for almost twenty years. Any kind of Vitamin C causes severe bladder pain. Someone mentioned Elmiron. It made my hair fall out. I am super careful with my diet. I have to be or I wouldn't be able to get out of day each day.
I do consider myself blessed in the fact that I already know what to do. I'm just not looking forward to it all. Everything makes perfect sense to me though. I don't know why I never thought about having co-infections. The depression has been eating me alive for quite a while now and I just thought it was all because of my life situation.
I'm so ready to have my life back!! I'm still caring for my elderly father. Thankfully I have a wonderful, supportive husband who helps me. As a matter of fact, he has taken my dad on a road trip for the day. I can't believe how truly blessed that I am to have him.
Thanks for the replies. So glad the Lymenet is still up and going strong. I have directed many people to this site over the years.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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