Topic: Update sort of...Infections...6/17, New final update
Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi <<<<< Lymenet Family >>>>>,
Still fighting UTI and sinus issues, more ABX, a pain to figure out what I can have w/ or near them Meds' ,supplements and foods.
6hrs. before this,2 Hrs. after that. No dairy, and so on...[the ABx is an older one I've had before,but I don't think any for this type of issue are really safe.] And they also gave me a Rocephine shot [sp.?].
Now weare waiting for a culture to finish and info' to come back, what is the problem, could it be something ABX resistant etc.
It makes me feel weak ,tired and cruddy, upset tummy etc. They said to rest as much as possible, keep up on fluids and so on. I went to an Urgent Care office,as its another full week before I see regular Dr.
I figure it is the ornery Borrelia and co's, invading more stuff. But that wont go anywhere, not gonna bother with non-LLMD's and trying to get them to understand Chronic Lyme. It falls on the usual deaf ears.
So I am home again...,yet...,still, trying to get rid of this mess before TxCoords knee surgery next month.Or at least get it were I can sleep a couple hours at a time, and not race to the restroom.
I am using D-mannose and other things that should help, but have to keep supplements Probiotics and so on far away from the ABX.
I try to keep up with laundry and such between rest times and restroom visits... I'm hanging in here, and praying this stops and that we find out what all is up [aside from the three bad B's... i.e. Borrelia, Babesia, Bartonella,and any other odd Co's that might be running around my system.]
I will keep hanging in here, this Wolfi girl is tired tho'... OwooWOOooooo.
I'll check back later when able...off to the races...er...the restroom ...
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Jus' me, any hints on easing the extreme weariness???
I'd appreciate it greatly,my usual energy go too's , I cannot use but around lunch time. Trying to find a way to get some rest,as i know that would help.
It'll be helpful to know what is found in the culture. Any tho'ts apprecaited... thanks in advance.
Jus' Silverwolfi
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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posted
I'm so sorry to hear this, Silver. I hope and PRAY that you are able to get some rest soon. The fatigue will get better once you are able to SLEEP!
I know 3 people (yourself included) who are currently fighting bladder infections that have lasted more than 2-3 weeks. That's rather scary!!
What's even scarier are the meds they have to give to kill this stuff out!!
Are you taking the Azo stuff to help with the pain?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
UGH! So sorry to hear about all this. I will think on it, say some prayers and check back tomorrow. Tis late and I used up my brain already.
Had I known I needed it this late tonight I'd have used it more sparingly earlier.
Oh, what antibiotic are you taking now? And it is very possible the culture won't show anything (other than an infection) if it is Lyme, etc.
More later- so brain dead and way past time for bed. HUGS!!!
Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi there <<<<< Lymetoo, and Tinny >>>>>,
Thanks for tho'ts prayers and any ideas that come to mind for this issue.
Suffice it to say about the older ABX I am on now,yup it is dangerous, so is this infection,and risking it going to my kidneys.
My family is/was loaded with UT.and Kidney issues,seems I was born with issues. My Kidneys,tho' on the small side, finally grew up enough to become visible.
In 1994, during a total and complete Hyst', they were discovered to be "virtually un- identifiable". They had not 'grown up',and were at that time the aprox. size of hubby's little finger-nail.
By 2004, they could finally at least see them,during a test before I had my gallbladder removed. Still not huge ,but visible w/o actually opening me up to find them.
The bladder is "barely adequate,and worn out" per Drs. info' from the mid 2000's.
I was DX w/ Triggernitis [sp.] in 1982, turns out that is the old name for IC [or at least one of them].
Pretty much everything to do w/ the Urinary Tract for me,is worn out. Now combined with aging and hormone changes it seems to be worsening,again.
The most recent test/culture they are doing is checking to see if it is an ABX-resistant infection. End of Dec.it was Klebsiella, not sure if it still is that,or something else. This is the third time I have had to get ABX for the mess.
It seems everything they can use to fight the darn infections is dangerous and damaging. And coupled with being on Medicaid-Amerigroup type, if one doesn't have a proven allergy to a medicine,one must try it.
Excuse my cynicism here...but one musn't be a difficult patient...if one likes to keep some sort of coverage. Ya know...
Sadly it isn't just Medicaid, TxCoords VA "coverage" is like this. My Mom's was too,and it was supposedly a good insurance company, that HMO landed her in the Hospital. And as far as my dad is concerned they,and the govt., are responsible for my mothers death.A Long story for another time.
I am taking a form of the AZO to ease urinary pain, unfortunately, they all seem to contain magnesium in some form. So I have to wait 2 painful hours after breakfast, then I can take it and part of my supplements. the D-mannose has it too.
Then I must wait six hours to get the 2nd ABX caplet taken. Then sometime after midnight,when the pain and intense urge to run to the restroom hits,I could take more AZO type meds.
It's a mess and the medication instructions,are convoluted and unclear, it took both TxCoord and I, plus a pharmacist, and info from the Net,to figure it out.
Sorry this is becoming a novel here, so I'll stop for now. Thanks for the tho'ts,ideas and prayers. I'm grateful for y'all and for LymeNet.
Jus' Silverwolfi here
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Well little darling, got my thinking cap on now and can't seem to come up with some decent answers here for you. But we will try.
We know acid - changing the PH down "there"- can negatively affect growth of bad bacteria.
In the past I've used and recommended a product once shared with me for this type of situation. Check on Amazon for this...
I'd be happy to share some of mine with you to see if can help. I take it when needed instead of antibiotics and it has always done the job for me when I have had a UTI.
If this is something you'd consider, just send me your mailing address and I'll send out a sample.
The other thought would be yeast. How's yours? Often we don't get the "typical" symptoms so it may not be showing up as an obvious problem. But the yeast can clog up your tubes too. And cause you to be very tired.
Let me know what you think. And please know you are on my mind and I'm concerned for you. Hoping you feel better soon!!!
posted
Silver.. I know you are taking the D-Mannose since you likely cannot take cranberry with your IC. I know how that is. Since the D-M is the active ingredient for the bladder from the cranberry, it should be your best bet.
Sorry to hear about all the med difficulties. So you can't take magnesium near the abx??
I would probably ignore that myself .. but I understand that you want to increase your chances of the abx working hard for you.
Sounds really difficult for you guys. I'm so sorry it's that bad.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi <<<<< Lymetoo,and Tinny >>>>>,
Thanks for the tho'ts,and prayers, and ideas also!
I appreciate you all so much, and am praying the Rocephin,and the older type ABX they gave me finishes this mess off finally.
Tinny, tho' I greatly appreciate the offer of the supplement, until I know more what the cause is,I better wait. So rain check for now...and thanks so much for the idea!
Lymetoo, I have taken cranberry supplements for several years, but have backed off of them,except for the D-mannose. I don't know what the cause of this infection mess is from.
TxC' talked to the Urgent Care,folk this A.M and they haven't got the culture results back from the lab yet. She said it may take a few days.
Tinny,the idea about the Yeast makes me wonder... I get the heat rash/yeast beast,where the legs join to the body, and under my belly. I try to be very careful,but have found that the meds can cause UTI's if one isn't very cautious when applying them.
Occasionally,I have to use some sort of the ointment type meds,or the rash bleeds. Dr.said don't get it near UT,and other delicate areas.
It's sort of a catch 22, the water here,is not good, in home it isn't wise to drink it without good filtration. I hate to shower in it but must.
The Urgent care Doctors concern is that aging,and hormone balance have caused some issues, And we will be having my regular PCP,recommend a Urologist.
Meanwhile,I continue to try to take a modified supplement plan,way away from the ABX,the last of which I take Thur. A.M. That will be a relief, and I can get back on most of what I usually take by Friday.
I do modify,some of the supplements,and only have two prescriptions now,aside from the ABX.
I manage to squeeze my Magnesium in at odd times, so as not to mess over the ABX. Still been getting odd leg cramps,starting a couple weeks back now, before this last set of ABX.
I woke at 2:4o a.m. this morning, after getting about an hours sleep,trying to get my left outer ankle area to stop cramping. I took until after 3:00 a.m. to make it stop.
And,until 2wks,ago I had never had a cramp on the outer sides of the ankles. Now I've had it happen 3 x's. so If I have to take magnesium,and Methyl B-12 had odd hours...it is better than the alternative. Odd tho' in that I made sure I got those yesterday.And still had the ankle cramp up.I
It has been usually in the left ankle, once in the right ankle. This a.m. I finally strapped some magnetic pads to the sides of my ankle,and put it up on a pillow.
Hopefully the burning UTI bit ceases soon ,and I can get some much needed rest. It does sting less today!
Thanks for helping me get thru this mess. I think our Lymenet is filled with Angels in human form, and it is a comfort.
Jus' Silverwolfi here
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Back again,with a weird update, Just got the call on my lab culture.
Stumped and puzzled Silverwolfi here....all but one lab report on the culture is back. They found no infection... zip, zero, nada... will see what the last part of the test will say.
We[TxCoord and I],are both really confused. Why did it sting and burn,why more frequency than usual ,in the need to urinate??
I don't have a clue,maybe the last part of the test will tell us something. Maybe it is an odd atypical yeast infection...???
Still gonna check about a Urologist. Don't know what else to do.
Confused Silverwolfi
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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posted
OK.. make sure you are NOT taking any cranberry or ANYTHING acidic.
I wonder if you are ingesting something acidic because boy it can flare up the IC like crazy!
Also... I PRAY you are not taking a fluoroquinolone because that can cause muscle pain .. it will deplete magnesium like crazy. (among other things)
I sure hope a urologist can help you!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi <<<<< Lymetoo >>>>>,
I am still trying to figure this out, TxCoord and I have been talking,and the only thing we could figure is I have eaten more apples than normal.
I had hoped that since part of my researching on D-mannose mentioned that apples contain some. Maybe it would help me, occasionally we get a more tart type,when I've had a lot of headaches.
It wouldn't have started this issue tho', but the tannins in the apples could have contributed it. I never even tho't about the tannic acid.
I'm still really surprised about the tests coming up negative so far. But glad the infection I've been fighting since December seems to be finally over. we'll see what the last culture test shows if anything.
I appreciate the tho'ts and prayers.
Jus' Silverwolfi here
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Jus' Silverwolfi in for a moment.
I did some checking on various sites,about UTI symptoms w/ no bacterial infection showing.
Up to 1/4th of women can have symptoms and nothing shows in the sample. So some of the tests they are likely running would be to see if there might be various signs of kidney stones or a blockage, Lupus type issues, or a hidden kidney disease issue.
Also E.coli can get into the bladder,and not show in a urine sample. None of these issues would be pleasant prospects.
And then, IC, can worsen , I mentioned apples. They said if one is having these symptoms back of of apples and many fruits for awhile. Beware of overconsumption of any caffenated beverages as well.
I'll hope and pray it isn't kidney disease,or E.coli,or lupus and so on. With diabetes,kidney disease is a real threat.
TxCoord has herbicide exposure related Diabetes w/ Stage three kidney disease,it isn't pleasant,and has IC like symptoms.
So I guess if Dr.will give us the referral to a Urologist, I better go and check with them. Hopefully we can work things around TxC's upcoming surgery schedule.
Course if the last culture tests shows anything, it may give us some clues. See I did a home test kit from AZO, and the tests all showed Leukocytes[the white blood cells]. That's why we were surprised that nothing showed so far in the culture.
Well we'll see when the results finally get in,and we get called back. Hoping this is something minor. I've already changed my dietary lifestyle, a lot, I can change it some more. Gotta get this under control.
I can't keep putting myself thru ABX, most of them give me problems. I much prefer the natural products/supplements.
Gotta go for now,will update as we find out more.
Jus' Silverwolfi here
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
We checked w/ Urgent care, the last Culture test still hasn't been called in to them,so hard to know what is up.
Hoping this will post, I think it is the computer,some things don't post, others do,and the screen likes to roll and scroll.
It's that Silverwolfi
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi all,
Still waiting for the last culture test. Supposedly,they are being run thru Quest,who doesn't work weekends we're told.
Don't know what they are working on,but most of it was back Tuesday,and they started it Monday,if we were told correctly.
TxCoord tried to reach them by phone and by e-mail as I have an e-mail account with Quest labs.
Wondering about a possible stuck kidney stone or something like that. A few tims I've heard an odd sound when urinating, a small clinking sound. But I do not know for sure that I've ever passed a stone.
Slowly things are getting a little better,but I still am cramping, abdominally, lower region,and in center around bladder area. Tends to be tender lower right.
No appnedix,or gallbladder,any more, total hyst. too. so not sure what all this is. Fighting lower back ache too.
And I've been fighting some Nausea today that I'm not sure the why off.
I didn't want to start a new subject line for this w/o more info', hoping the lab answers our e-mail soon.
Jus' Silverwolfi here still puzzled, and tired.
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Well,
The final culture is in fact positive, don't know what the infection was this time, the girl told me they weren't given that info'.
I suspect it was the Klebsiella again, finished the ABX and am going to my PCP early next week. We'll see what his tho'ts are.
This has gotten really old, really fast, and waiting from Saturday the 12th 'til today 6/17, a Friday to find out what was up,seems a little long a time.
So that's were I am at with this,and praying it is gone completely,and doesn't come back,a 4th time.
Jus' Silverwolfi here
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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