Topic: Arrgh, Hate infections, I have a UTI, again, ANd TrekC's Ankle is messed up [1st re
Silverwolf
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Member # 9196
posted
Hi <<<<< LymeNet Family >>>>>,
I made it out the other week to a Dr. appt.,and some lab tests, not easy for me right now.
And I have a UTI again... I wonder if it ever leaves... so frustrating, my Sinuses have been acting up too .
We, TrekC' myself and the Doc' are trying to figure out something I can safely take, he ordered an ABX,we'll see...
Sometimes I can get a way w/ Bactrim, unfortunately the headaches gets severe from taking it... so we'll see if it is that,or if he wants me to risk something new.
I have tried to find herbal things that help, but am allergic to much of it too. I already take D-mannose daily.
Allergies include :anything in the celery family, like fennel,cilantro, dill, turmeric and so on.
And I am still fighting a rash from the last med my Cardio-doctor had me on...sorry to complain... I'm just really discouraged right now.
I wonder if somehow ,I am an infection carrier, beside the Lyme,Bart,and Babs, that's already too much...
-------------------- 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
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Member # 9196
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Hi <<<<< LymeNet Family >>>>>,
I found out I had this infection , just after my TrekC' got home from having his ankle examined,it is not in good shape.
In a about a week and a half, he'll be having some meds injected in it to try and stop the pain,it's the left ankle,and it is mostly fused together, w/ no cartilage left.
When his knee broke it affected the ankle too. It seems to be one of those ,if it rains it pours times.
Tryin' to keep our heads up here... we need to both get better.
jus' Silverwolfi again
-------------------- 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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map1131
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Member # 2022
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Mycoplasma my dear mycoplasma. Well known for the urinary track. Don't bother testing.
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Silver, please make sure your doctor runs culture & susceptibility on your urine. This is the ONLY way the doctor can know exactly what type of infection you have & what you need to treat it.
You might have a mixed bacteria & fungal infection, or a resistant bacteria, or a very rare bacteria. If you don’t know what’s causing the infection you will continue to be sick.
Same idea with the sinuses, they need to get a sample then run culture & sensitivity tests.
If you have a chronic cough, make them take a sample run a culture & sensitivity on it.
Any decent doctor can & should be doing this without you asking.
Carelessness hurts my heart. It kills.
Posts: 5237 | From here | Registered: Nov 2007
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sammy
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Silver, I can’t help but wonder if you might benefit from a trial off all supplements.
I can’t take any supplements at all anymore due to the severity of my Mastocytosis. I’m not trying to diagnose you with the same. I’ve just seen you suffering with what looks like allergies for a long time.
Supplements are concentrated natural substances that contain antigens & such. They can trigger strong immune response that make certain sensitive people feel miserable instead of feeling better. (This is a very simplified explanation, OK?)
I did NOT believe my Mast Cell specialist at first. It sounded illogical. How could natural things being so harmful for me? It was hard to accept.
It took at least a 5weeks after stopping the supplements before I noticed a difference. Wow, amazing!!!
Something to consider.
[ 06-11-2018, 02:31 AM: Message edited by: sammy ]
Posts: 5237 | From here | Registered: Nov 2007
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sammy
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posted
You really need to be careful to avoid all fragrances. (Don’t worry, I bet you smell better than most of the general public!)
Fragrance is a bad trigger for all people with allergic tendencies. I love things that smell good but it’s taken a very long time to learn that they make me sick.
Use fragrance free laundry soap. Try switching to cetaphil products, ceravae, or original dove soap.
And avoid using store bought wet wipes, they could definitely contribute to irritation & infection. For a good economic alternative, get some baby washcloths (they’re thin & super soft!) & keep them in a basket in the Bathroom. Warm water is usually enough to freshen up.
And I hope TX is seeing an orthopedic surgeon for the ankle & knee.
Posts: 5237 | From here | Registered: Nov 2007
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Silverwolf
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Member # 9196
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Hi <<<<< sammy, and map'/Pam >>>>>,
Thanks so much for the replies and info', I have pulled off of all but what the Doctors have asked me to stay on supplement wise.And I had been testing to see what was or wasn't safe for me,for quite awhile.
The D-mannose is a non-acidic part of cranberry, sometimes I can stave off the infections for a bit with it. [ Not sure I am explaining it properly.]. But I could be allergic to even that, something to think about.
My Doctors said stay on the B-12,D-3,fish oils, and K-2 [helps the body properly absorb calcium]. I have often mentioned some of the supplements, because until recently, they hadn't caused problems that I knew of, and it was my only way to fight the Lyme and Co's.
Now that I am allergic to the celery family, there are many,many that I cannot take. And I do appreciate the heads up to back off of the herbal supplements.
PCP has cultured the urine,and it is usually Klebsiela bacterium... he didn't tell the nurse this time when she called so we'll have to wait 'til I can check back in to find out what bacterium it is this time.
I suspicion that I have Mycoplasma Pneumoniae, wandering thru my system from descriptions I've read,and symptoms.
Also both TrekC' and I are suspicious of the MCAS/MCAD problem in my situation. Gettting a DX, with doctors who don't believe Lyme and Co's can go chronic,and dealing w/ Medicaid is highly difficult as you know. My Doc' thinks that MCAD is 'just bad allergies'. [ ANd I remember thinking, hey, allergies can kill.]
At least my PCP has been running the Urine cultures to try to figure out what bacteria,and like I said it is usually Klebsiela.
There is CT test they can use, to find out if Kleb' and or other Bacterium have formed a colony ,problem is getting Medicaid to authorize such.
As to TrekC's knee and Ankle situation, the Knee surgeons contacted peers at Stanford, to help figure out what can be done. He is being seen at the VA hospital and clinics. They are literally afraid, that surgery will make matters worse. And after his heart attacks, that is a major concern.
I can't argue some of the VA docs reasoning, but I still don't trust them, to many odd things have happened to TrekC'.
His Surgeon ,today,was amazed and bothered, she couldn't find his recent x-rays that were to have been sent...and suddenly they just appeared on the Government computer.
At least they appeared this time instead of disappearing which has happened a plenty. We have a Congress Person in our corner now which helps. We got tired of getting the run around.
Anyway, thanks again, for the info',and the advice... I'll do some more research. It seems as tho' each time, I get one thing calmed down more issues arise. And trying to find a safe way to calm it all down, is frustrating, because of allergies,old and new.
We've been praying for a Miracle, for both of us...and I am not sure what else we can do.So I wait,and try to research what may help.
-------------------- 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
Oh, jus' me again, I don't use regular soaps, and in fact use the simple Dove type bar. And I limit how much I use it and where.
I've been concerned for a long time, about this. Because I don't yet know all the allergies and skin issues,and what for certain is triggering it all.
Shampoo is another concern, I use it carefully,and sparingly, usually diluted, as I am concerned about it splashing.
I have also been avoiding swimming for several years,as the only access we have is public pools.
Hopefully soon, I can get rid of these infection issues. I pray so...
Jus' this 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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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I had urine test after urine test and never could the lab identify what was causing my issues.
My doctor's explanation was the labs only know what the labs know. Nothing but the basics!
I'm sorry you and TrekC are going thru a rough patch. Hang in there.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi <<<<< map'/Pam >>>>>,
Thank you for the kind words, talking w/ TrekC' last night I was reminded that I had in fact had a scan done because of the UTI's.
Had to drink barium shakes, nothing turned up, they scanned from throat down, supposedly nothing was wrong, except a bit of excess calcium.
And then the surprise heart issue, a 'bit of excess calcium' turned out to be dangerous. ANd my heart was a mess. So was the Urinary tract, w/yet another infection.
Oh dear, me thinks if the rough patches get any rougher, I might have to get something for motion sickness.
TrekC' and I will Hang in... and Hang on to the Lord, and continue to pray,and do the best we are able.
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,
Finally got my lab info', this time it appears it is an EColi UTI of bladder etc.
My A1C, was up a bit, which is usual when an infection hits.
I don't like the ABX, but using it carefully and watching for any side effects.
They don't like my Cholesterol at 249, but as many others here, I don't consider it anything too serious.
Most everything else was pretty good, sodium level was down a bit, and chloride was down a bit. have to research this.
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
Don't stop the D-Mannose. I would make sure to take it twice a day .. maybe more when your symptoms kick up.
As for other supplements, sammy is probably right. They are high in salicylates and sals cause mast cell degranulation.
I hope Trek's ankle improves ASAP!!
-------------------- --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 >>>>>,
Thanks for the tho'ts, and I have stopped most of the supplements, awhile back.
I continue to take the D-mannose,at each meal,and K-2 ,boron [couple times a week], D-3 and B-12 [at PCP and other Drs. insistence, had been taking that/those anyway.].
And a blood sugar formula, as sometimes w/ infections My A1c tends to rise.I cannot take the usual medications for Diabetes,as they cause liver problems for me [and are not kind to kidneys].
Had to learn a lot,when my celery family [Apiaceae ] allergy hit.I didn't know how many spices and flavorings are in that family ,until we researched, after me having a bad reaction to a small bite of fennel[ Last November ].
I am researching some other commonly used plants for supplements, as I suspect they are most all interrelated. I also do a fish oil, all of these that I do, my Drs. know. I am not surprised to learn of the salicylates in so many of the Supplements/foods I canno longer eat.
Again for all in general who wonder, I am basically taking what my Drs.have approved. It is frustrating, because I cannot find safe foods, supplements or medications anymore.
And I do try to learn as much as I am able, what foods I might still tolerate. TrekC' is checking into an allergy test, that if we save our shekels as it were,I might could afford to take.
Speaking of TrekC, his ankle needs a miracle, when bones fuse together it is never good. The severe Systemic Arthritis that he has, kicks up a lot now. The cartilage is gone, just like how it did in his knees.
The herbicide spectrum exposure in Service didn't do anything good to help TrekC', nor does it help those of us who were exposed as children,or any other time. But, I overstate the obvious...!
I sometimes wonder too, if salicylates have crept into everything, even our water sources.
I'd better close for now...and check on some various things. Thanks again for the comments and concerns, I appreciate it.
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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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Jus' Silverwolfi here,
I have been susceptible to infections for most of my life, and We recently had to replace our refrigerator. Food was spoiling in it,as it wouldn't seal properly.
Since my surprise heart problem last year,and ensuing quintuple bypass ,my resistance seems down even further. Autoimmune system is -not- doing very well. TrekC and I blame the Lyme and Co's.
[edited in,Just noticed I forgot the 'not, autoimmune isn't doing very well,I don't feel , hence easily getting infections etc].
-------------------- 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
Part of the issue with salicylates is how our foods have changed, how they are grown. It also relates to how they are now harvested .. way early!!
Allergy testing may or may not help. It didn't help me at all. I have to just navigate on my own. I pay attention to how I feel and what foods may have affected me.
Don't forget that even skin care products and shampoos contain sals .. hand lotions, toothpaste, etc. You can eat more foods by cutting down in what goes on the skin and thus into the body.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Silverwolf
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Member # 9196
posted
Hi <<<<< Lymetoo >>>>>,
I hear you,about the way everything is grown now. And also here in Vegas, the water is so full of chemicals it is scary.
They cannot get it all out, so they use more chemicals to try and nullify what hey can't get out.
Our drinking water is filtered, and it takes out a lot of really gross stuff, we have to Filter or get ill.
Looking into whole house water filters,to see if we can find something safe. So far as I know our current sink filter doesn't have coconut matting in it. They don't give filter content detail on box, or online for this.
Skin care and shampoo, I'll need to double check if fig and olive oil have salicylates in them.
I'll have to look for some inexpensive safe shampoo, so far I've been diluting it,and hoping for the best.
Thanks agin for the comments and tho'ts!! It helps,and gives us a direction to look for sfe products.
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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