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#Post#: 2403--------------------------------------------------
Re: Kevin's Journey to Recovery
By: Piper Date: June 27, 2015, 1:02 pm
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[font=trebuchet ms]Long journey to Iowa and back on the 22nd.
Doctor went through our symptom list, offered what bandaids she
could. He is to double the Clariton, and we will add in
Zithromax, on top of the Amoxicillin.
We go back early August, at which time we will test his liver
and kidneys to be sure they are handling the flood of drugs.
Not one small sign of improvement.
We wait. And wait.
My dark thoughts are on my site. Best I leave them there. They
spill out of me, but are none too encouraging.
Thank you all for your love, for caring.
Somehow, we'll get through.
God be with each of you.[/font]
#Post#: 2409--------------------------------------------------
Re: Kevin's Journey to Recovery
By: Heartsong Date: June 28, 2015, 1:48 pm
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[quote author=Piper link=topic=203.msg2326#msg2326
date=1434435173]
[font=trebuchet ms]This is what it is like after what should be
a simple shower. This is "herxing", a result of antibiotic
treatment for advanced Lyme disease. This is our current hell.
No indications how long this might last.
If you even make it thru this one video, there are 7 more, but .
. . this one is more than enough.
Public awareness. Medical community awareness. This can and
should be PREVENTED. This is not acceptable. All these
beautiful people should not be made to suffer. Thousands of
them. Tell people to get tested! Someone you love could be
next.
[/font]
[/quote]
I watched two videos. My heart goes out to you and Kevin. I
found myself crying...
I was wondering if there was anything to help someone relax and
sleep or even something for pain who is experiencing these
symptoms. I know great care has to be taken when someone is on
prescription meds and mixing those with other drugs. In the case
of my daughter, she was taking heart meds so she couldn't take
meds for sleep or pain because it affected her blood pressure.
The pharmacist recommended the strongest dose of melatonin and
that did help her to relax and sleep better, at least for
awhile.
I was looking on a website for meds for lyme disease to help
with sleep and relaxation. I'm sure you've already researched
this but some of them mentioned melatonin, muscle relaxers and
even trazadone for sleep. The overall feeling about the
trazadone is that it causes nightmares, vivid dreams and a
doctor told me that it can cause hallucinations. So I don't
think that's a good one for sleep. Some mentioned xanax to help
with sleep. Some also mentioned benadryl to help with sleep and
relaxation. My daughter took benadryl when she was desperate for
sleep although she wasn't supposed to take it.
You and Kevin are in my thoughts and prayers.
#Post#: 2413--------------------------------------------------
Re: Kevin's Journey to Recovery
By: Piper Date: June 28, 2015, 2:17 pm
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[font=trebuchet ms]Kevin's doctor prescribed an antihistamine
for sleep, and said he can even take two if necessary. They do
help at night.
Kevin doesn't get a lot of pain, which is good. Just totally
overwhelming fatigue and, well . . . his leg function is all but
gone. He has a few other irritating symptoms (like numb hands,
bladder urgency, ear drumming, etc.) that come and go, but the
crippling fatigue and terrible walking difficulty top the list.
Showers are almost too much for him.
Doctor suggested we look into physical therapy, but not sure we
can afford it, or if Kevin has the energy yet to even attempt
it.
Thanks for praying. I know you still miss your girl terribly.
So sorry. (((Hug)))
[/font]
#Post#: 2416--------------------------------------------------
Re: Kevin's Journey to Recovery
By: bradley Date: June 28, 2015, 10:34 pm
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You can pick up one of those stretchy things they sell in
sporting goods section near the yoga stuff. Use natural
tension as much as Kev can push it. It might be painful and
hard, but it might help build some muscle slowly if he can keep
it up despite the weakness.
#Post#: 2558--------------------------------------------------
Re: Kevin's Journey to Recovery
By: Piper Date: July 17, 2015, 12:12 pm
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[font=trebuchet ms]Please keep Kevin in your prayers. (I know
you do.)
He's in "full-herx" on the Zithromax, which is good, as it
indicates the bacterial invaders are not at all happy, but,
then, it makes him very ultimately miserable, as well. He's
even running a low-grade fever. Breaks out in sweats all the
time, but that, too, is good, as it indicates his body is
expelling the endotoxins produced by the massive amounts of
bacterial die-off.
I'm researching to find more means of detox, which might ease
his suffering.
Four nightmares of advanced Lyme:
1. Herxheimer Reaction
2. Medical Association refusal to acknowledge advanced Lyme
disease
3. No idea how long you will herx, no idea when you might feel
'well' again
4. Endless, debilitating, ultimate fatigue
Kevin can hardly walk from room to room, he is so weak. He can
barely shower. His trains are even neglected of late, so I KNOW
it's bad.
It's killing me, seeing him like this, but we have no choice
other than to go thru this. What is the alternative? Has been
a long, hard road, and no end yet in sight. Imagine being sick,
every day, for three years and counting. We are told some
people take up to 4 years with treatment before they are in a
good remission. Can't even think on another 4 years of this. :(
And we ain't gettin' any younger, here. ::)
Next long journey to Iowa, we will be having blood work done, to
assure his liver and kidneys are safely handling the meds, and
to check his white blood cell count.
We've no guarantee, either, that when this is finally 'over'
(remission) he will walk again. We don't know how much nerve
damage is permanent.
Trusting God to see this thing through . . .[/font]
#Post#: 2562--------------------------------------------------
Re: Kevin's Journey to Recovery
By: bradley Date: July 17, 2015, 11:48 pm
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I have no doubt God will see you both through this. Never give
up, because God certainly wont!! :)
#Post#: 2568--------------------------------------------------
Re: Kevin's Journey to Recovery
By: Piper Date: July 18, 2015, 7:16 am
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[font=trebuchet ms]Amen, Brad. There have consistently been
signs that He is with us. God is faithful.[/font]
#Post#: 2573--------------------------------------------------
Re: Kevin's Journey to Recovery
By: bradley Date: July 18, 2015, 9:19 am
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May the Lord bless you both this day!
#Post#: 2660--------------------------------------------------
Re: Kevin's Journey to Recovery
By: Piper Date: July 24, 2015, 11:31 am
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[font=trebuchet ms]You guys.
Last night I went out to get the mail and there was a letter
from Dr. Rosman (Kevin's Lyme doctor). I immediately had a bad
feeling. I opened the letter, read it, and it was our worst
nightmare. Dr. Rosman is caving to all the political pressure,
and she is closing the Sumner, Iowa clinic, effective Aug. 19.
She is going to partner with the Avera Medical Group in Sibley,
which is the very hospital that recently rejected Kevin and all
Lyme patients. In the letter, she said she hoped some of her
patients might remain her patients, but since the Avera Hospital
canceled our appointment recently, refusing to see Lyme
patients, I must assume her Lyme patients are being left
completely out in the cold and will not be welcome.
We have one more appointment with Dr. Rosman in Sumner before
she closes up-- if she doesn't suddenly cancel that, too.
Kevin still has quite a bit of amoxicillin left. Dr. Rosman had
prescribed a large amount of it to him in the past. But he's
been trying to get his Zithromax refilled, and every time he's
checked, the site says, "Waiting for doctor." She seems to not
be renewing it. When he called the clinic, he couldn't get any
straight answers. In retrospect we wonder if she had some idea
all along that she was abandoning her Lyme patients.
From what we've read, if the antibiotics are stopped too soon,
it allows the bacteria to build a resistance. He's been on the
amoxi for a couple months and the Zithromax for about a month.
I don't know what the drug protocol would have been next.
I dreaded telling Kevin last night, but decided I had to,
because we need to call her clinic today. He had to know. His
response was terrible. He was so shocked and dismayed, and he's
convinced he's just being left to get sicker and sicker and
die--that no one will help him. I literally had to talk him
down. He was in full panic mode. Meanwhile our friend Lisa,
with Lyme, who is treating with herbal remedy alone because she
can't afford the antibiotics, is only getting sicker and has
told us she won't be on Facebook much because she is just too
ill.
I will find alternatives. We might be able to get in with Dr.
Crist in Missouri, although it takes months and months to get an
appointment with him. But, maybe, he could just continue where
Dr. Rosman left off with the drug therapy. I don't know. He's
further away, much more expensive, and he doesn't handle
insurance, which is a real headache.
I've considered that perhaps Kevin could go and live with his
mother in New York. God knows I don't want us to be separated
when he is so very sick-- he needs help with so many things--
but Lyme is very prevalent out east and in the area where his
mother lives, so there must be doctors there that will treat it,
that are treating it. But people are more aware there, and they
catch it early. I don't know how many advanced cases there
might be. Thing is, his mother's husband is very ill right now,
as well, with kidney failure, diabetes, etc.
Last resort, we can turn to holistic/herbal meds, but this is an
infection, and I know the miracle antibiotics are from treating
my animals over the years. But, he has, at least, had a couple
months of them.
What will happen if he just stops the antibiotics when he runs
out of what he has already? The Zithromax will run out by next
Wednesday. Could two months possibly be enough? I doubt it. I
just don't know. The drugs make him feel so sick (the herxing
reaction), it's hard to sort out what sickness might be
side-effects, what is the herx reaction, and what could be
possible disease progression. We hope none of it is disease
progression, but he can barely walk at all. He has been sicker
than ever before. No balance. The same horrible fatigue.
Unspeakable weakness.
I'm trying to hold it together, but we feel like we are being
abandoned by the medical community. Abandoned! It isn't just
us, though. There are 7000 Lyme patients on our friend Lisa's
Lyme forum, alone, and that is just women.
Be very careful with tick bites.
I just don't know what might be next.
(And, insult to injury, I just found a small red deer tick
crawling on my leg. >:( )[/font]
#Post#: 2661--------------------------------------------------
Re: Kevin's Journey to Recovery
By: Piper Date: July 24, 2015, 2:16 pm
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[font=trebuchet ms]Okay, we called the Sumner clinic. Now, even
though we were told a couple weeks ago that Sibley will NOT see
Lyme patients, we have been told that Dr. Rosman WILL continue
with her Lymies (as they call them), and we are to get Kevin on
the "list" over at Sibley, but that Dr. Rosman is going to "try
to keep things under wraps." NOW, they are telling us she
actually has MORE support over at Sibley than in Sumner.
What the heck?
Yet, we still must go to Sumner for this next appointment.
However, it seems--THANK YOU, GOD--that we still have our Lyme
doctor, after all. Thank you, Dr. R.
I think we can breathe a sigh of relief.
[/font]
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