posted
Betty, I'm in so much pain. Levaquin helped but my doc took it away after five days. I KNEW I WASN'T cured, but she would listen.
See? I was SURE I'd been bitten before, but only realized it when this happened. Now I'm fading fast and no one will listen.
The newer bites have intensified every symptom I had. Then they raised the ante and went after vital organs.
I feel like I've already been gone. Am I depressed? I don't think if myself as being so. I think this is a natural response to an unnatural circumstance.
I remember a time when a person suffering from potential kidney failure would be hospitalized and tests run.
Good news. I stopped typing to call doctors. SOMEONE will be getting back to me.
My LLMD's nurse was not surprised that I had "clear" urine for lab testing, and every other sign of active disease that has every symptom of a severe and advancing infection.
I thank you for your kindness and prayers. I feel SO alone. I had long since been disabled out of my job, and given up my social life.
I've been too patient. For years, I have just waited at home for either a doctor to do something or this to get better on its own.
In some ways the new tick bites are the best thing to happen yet...that is IF I don't lose my kidneys.
Thank you for looking at my video.
You are amazing. Warmest regards, LL
-------------------- "SEVEN LYME FACTS THAT COULD HAVE SAVED ME" VISIT ME AT:
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i will be thinking and praying for you.
hopefully this is just a temporary thing and your kidneys are just taking a break.
drink lots of water and rest.
and keep in touch with those dang doctors and if you have to, scream and yell for treatment...
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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bettyg
Unregistered
posted
LL,
i'm so very sorry to hear about all your pain you are going thru.
will be answering your PM to me now; busy morning after this place...UNUSUAL!
LL, are you getting SSDI, ss disability insurance benefits, from work?
if not, we've got to help you get this process started as well so MONEY can be coming into your household!!
will be in contact SOON! hugs/kisses bettyg
HOPE more members will join in this discussion.
RNs, what could help her for her pain?? ***********************************************
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Lymelearned,
You may want to google cordyceps and kidney. I know a priest who was ready for dialysis and started cordyceps and has avoided dialysis and kidney function is fine.
My best friend was in stage one last year. Started cordyceps and just yesterday received normal kidney function roeports. The only thing that was off was BUN slight elevation...6 points on the plus side of range.
it may be worth a shot. I am so sorry about your struggles. this is a wicked, life robbing disease.
Hang tough, these things have reversed in others.
Best, Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
PS you may want to post this in Medical for more attention and input.
posted
Ohh. I'm so sorry! Here you are- just diagnosed with Lyme.
I'll be praying for you as well! Keep fighting for treatment! The doctors CAN'T ignore you now!
Posts: 503 | From Alberta, Canada | Registered: Jun 2009
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bettyg
Unregistered
posted
LL,
i just emailed lou bachman and asked him to move this to MEDICAL where you will get more readers and replies.
so don't be surprised when it is moved; he notifies folks that things were moved too ok my new friend.
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
LL,
Lyme disease can make many blood readings go outside of the normal range. My now famous lyme doc told me this when I got to him and had a very high cholesterol level. I had always had a low cholesterol.
It also made my estrogen level very low--menopausal levels--and I had to take hormone replacement until I began to recover from the lyme with good lyme treatment.
So, check with your lyme doc about whether lyme can cause an abnormal GFR.
It says that muscle wasting conditions will lower your GFR score due to low muscles mass. That may be your case since you have been disabled a few years with muscle weakness. You may have very low muscle mass for your age is what I am saying. If that is not taken into consideration, the GFR will be incorrect.
Also, there are other factors that affect GFR such as taking antibiotics. Be sure that was also taken into consideration if you were on antibiotics at the time of the test.
Posts: 9931 | From Maryland | Registered: Dec 2007
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bettyg
Unregistered
posted
tf, great info; i copied the link to my own links
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
So sorry you are going through all this. You are in our prayers.
Take care.
Linky
Posts: 2607 | From Hooterville | Registered: Apr 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
LL, please notice the final paragraph of the page I reference above:
"All of these factors make serum creatinine testing an inaccurate method of analyzing kidney function and when used alone, an unreliable tool for assessing the state of chronic kidney disease. As a result, the serum creatinine concentration is typically used only in conjunction with a creatinine clearance test, or prediction equations."
I would love to hear you say that later testing showed that you are OK. Based on this article, you need other testing before you can be told that you truly are in stage 3 kidney failure.
Please let us know.
Posts: 9931 | From Maryland | Registered: Dec 2007
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bettyg
Unregistered
posted
tf, thanks for finding these things for her to check out! you've been a real lifesaver here!
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bettyg
Unregistered
posted
LL, how are you doing today?
have you had a chance to read the above and check things out? hugs/kisses
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
LL,
It doesn't sound like your doctor is really Lyme Literate if he/she took you off Levaquin after only 5 days! Or, was that because of your kidney function?? You definitely need a truly LLMD. along with whatever specialist you may need about your kidneys.
Please be proactive, and "squeak" as loudly as you have to to get the proper care pronto! It's your life, not theirs.
Posts: 3771 | From around | Registered: Mar 2008
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