Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
I was at doc s office today.
More bad news... Pre-diabetes High chloresterial CIVD (common immune variable disorder)
NICE. Just add them to all my other disorders..
Now I have to be a bigger burden to my loved ones. I need to go an hour away to a University Medical center for IVIG plasma treatments long term. Need to get a ride there and then have them wait for 2 hours till I m finished..
I DONT WANT TO DEAL WITH THIS ANYMORE. WHEN WILL THIS NIGHTMARE END. WHERE IS THE LIGHT AT THE END OF THE TUNNEL?
And then my mind wanders back to the beginning. When I begged my doctor to treat me for Lyme. When I told him I live in an infected tick area. When I told him I have touched ticks from pulling them out of my dogs. When I told him that I had called my county health department who confirmed 80%.of ticks tested positive for borrelia.
Posts: 2543 | From Florida | Registered: Nov 2016
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
So sorry Bartenderbonnie. This disease is such a nightmare. One of my docs is suggesting IVIG plasma treatments for me as well. It is all so scary.
There are some good nutritional supplements that help to regulate blood sugar levels that help with other things as well. NAC (N Acetyl Cystine) and ALA - (Alpha Lipoic Acid). Probably others too.
As far as cholesterol goes, you might want to ask your doc about cholestyramine because besides lowering cholesterol, it also helps to detoxify the body of toxins from die off as well as mold toxins.
You will need a prescription for this. But start slow. You would need to take this away from your other meds because it will bind everything.
I am no doctor so please discuss all with your doc. Good luck to you and I hope the IVIG will make you feel better!
Posts: 2369 | From New England | Registered: Aug 2011
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
I am devastated. I have been crying all night.
Thank you for the kind words dbpei and Brussels.
Getting ready for appointment with LLMD. Out of town, of coarse.
I m in a s***storm. Everywhere I go, I step in more s***.
I guarantee I ll be coming back home with another s****y disorder.
I DONT WANT TO DO THIS ANYMORE !!!!!!!!!!!!!!!!!!!!!!!!l
Posts: 2543 | From Florida | Registered: Nov 2016
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Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939
posted
To lessen the burden on loved ones, you can ask to do subQ Ig. You can administer it yourself at home.
I never got out of the hospital for IVIG in less than 4 1/2 hours. The last couple of times was 6-7 hours at a different hospital.
SubQ is much cheaper also. I also found subQ to be with little side effects as opposed to feeling awful for 3 days after IVIG and one week prior to the next dose.
And, watch where you step! I think you must be on my turf.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Yup, sure enough, another disorder.
Generalized anxiety disorder. Because of my health and economic situations. Upped my Xanax med.
Pocono Lyme,
I asked doc about shots and he said no. But thanks for warning me about the time consuming IVGG treatments.
Posts: 2543 | From Florida | Registered: Nov 2016
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Bonnie, my cholesterol was high when I started lyme treatment. My good lyme doc told me that lyme causes this and to expect it to go down as I treated lyme.
Sure enough, that is what happened. So, don't worry about the cholesterol at all right now. Not at all. I would not treat it.
And, lyme causes anxiety. They call it lyme anxiety. It just goes along with lyme. I took Xanax for a few years before I was finally diagnosed with lyme. It was terrible anxiety. Finally, I found out the cause.
So, you really are not accumulating more disorders. You are just finding out how lyme commonly disrupts the body.
If you look at the Burrascano Guidelines, in the list of supplements, you will see all of the supplements that your body needs as a result of you having lyme for a while. Consider taking a number of these.
I went undiagnosed for 10 years. Once I was diagnosed, I would look back at the start of those 10 years and recall the first top-notch internist that I went to see. I had waited over 3 months to become his patient.
He listened to my symptoms and said, "Were you ever bitten by a tick?"
I said, "Not that I know of. But, I get them on me in my back yard all the time."
I didn't know anything about lyme then. That great doctor was obviously thinking lyme disease, but he did NOT order a lyme test for me that day.
He ordered routine bloodwork that all came back normal. Then, he offered me antidepressants (which I refused) and that was the end of that.
So, he doomed me to wander around looking for my diagnosis. As it turned out, I looked for a LONG 10 years.
Yes, I got angry many times thinking about that doctor. I thought many times of writing him a letter to tell him what he did and how it "doomed" me.
All these emotions are part of what we go through. It comes with the lyme disease package! But, as you are treated, better days will be ahead.
This disease will teach you patience and compassion. You REALLY have to learn patience. Nothing happens quickly. Persevere! We are rooting for you. Cheering you on!
Posts: 9931 | From Maryland | Registered: Dec 2007
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
My LLMD said that people with low cholesterol are actually worse off because cholesterol has an important function - it gets rid of toxins.
She also said that thin people are generally worse off since toxins like to go into fat. If you don't have much fat, they go into your brain and that's worse.
Posts: 1737 | From Virginia | Registered: Aug 2011
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
TF,
Thank you for uplifting message !
My CIVD diagnosis almost broke my spirit. . . But not quite. I can do this, yes I can.
My point is by not treating tick bites, it becomes a snowball effect on the human body.
I too, think about my ex primary doc who wanted to send me to a psychiartrist to "learn to live with my symptoms". Thank God I was able to say "No, that is not acceptable standard of care.."
And when he dismissed me from his practice one week later. I was so sick. .It took me 6 months to find a new primary. I found out later that he was legally required to provide care to me for 30 days after termination.
I also was told to contact the office of professional conduct for his intimidating verbal harassment and for abandoning and neglecting me without professional care.
I brought full blood work tests results, from ex doc to new doc, which showed 3 bands but also no vitiamin B or D in my body. He gave me shot in my ass immediately.
My focus can't be about negativity. It has to be about the positivity of the human spirit, the beauty that surrounds us.
And don't worry, I have nothing but time to work on my patience. Compassion I already had.
PS. To Stefi42
On the Medical thread "when docs find nothing does it make you feel better."
I cried when I read your post. You are fearless girl !
Posts: 2543 | From Florida | Registered: Nov 2016
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
There is no need to have someone drive you an hour away to get IVIG. You can get it at home with an infusion company and a home-health nurse. Much easier! Plus, it usually takes much more than an hour, so much easier at home. They can use an IV pump, so you don't have to be tied to an IV pole.
IVIG can help you a lot, particularly since you have CVID. I wouldn't recommend subQ, as you can't get the same dosage at all.
TF is right in that the infections cause all kinds of diagnoses and problems, much of which will get better, and hopefully go away, once you have treated enough.
She's also right about the cholesterol. Besides which, "high" cholesterol isn't the problem that people think it is. Your hormones are made from cholesterol; we need it.
You WILL feel better! The hard part is being patient through the tribulations.
Posts: 3748 | From around | Registered: Mar 2008
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Great treatment options rumigirl !
Will definitely follow up with your suggestions !
Thank you !
Posts: 2543 | From Florida | Registered: Nov 2016
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This disease is such a nightmare. One of my docs is suggesting IVIG plasma treatments for me as well. It is all so scary.![[Big Grin]](biggrin.gif)
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