Topic: Update , the 'Infection' ... new Update #15
Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi <<<<< LymeNet Family >>>>>,
What ever this 'multiple organism' small Colony 10,-50,000 is ...it still shows in my Urine tests.
The Lab,wont give further info', your Dr. must,and of course no one is in the Office until Monday.
I cannot keep taking ABX, over and over, even with something to reduce allergy/sensitivity reactions. We'll find out more Monday, we hope...
I wish they'd do the Lyme Urine Antigen test, but it's an ID Dr. so that's highly doubtful.
And the Doc's office says we have to pay 50cents a page per each page, of the report. I am on 'Madicaid' for a reason. [and it is MY records here...].
Monday is gonna be interesting, and I doubt we'll have an appt. yet by Monday,it is already stacked full, with appointments, and legal business,and more.
I am trying hard not to be further discouraged. They don't even say the Kleb.' Pneu.' now, they just say 'multiple organsisms'. This is from the follow up test,1st test,Nov.1st,and follow up Nov.17,two days after finishing ABX.
I take D-mannose, faithfully, and several other Supplemental herbs.
I'll check back later,and see if any of Y'all have an ideas what else can be done. Thanks for any tho'ts or ideas you may be willing to post.
-------------------- 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
Just pulled the thread-topic back up from the Nov.1st test...
It's jus' Silverwolfi here, re-reading info'.
Will update when we learn more... If anyone has an idea of how to help??? Thanks for any tho'ts you may post.
I was so hoping this mess was gone,...hopefully they'll have some helpful ideas next appointment.
As we all know, a Bb weakened immune system, with more illnesses hitting is never an easy thing.
As so many of us can say... " I need a break, I really need a break.".
I remain thankful, in this Holiday season for my Hubby,TrekCoord, Our LymeNet site/and LymeNet family,and a church group that keeps praying and doesn't give up on us!!!
Jus' Silverwolfi looking at the good things, even with discouraging news!
-------------------- 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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bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
Silver ..you are a real trooper ...happy holidays , i pray you and txcoord .. bactrim didnt do it ...?
I know you are inbetween a rock n hard place ...i do not want to get on medicaid for reasons you state .. i ask you to empower yourself ..forget the medical establishment that has abandoned you.
I know finance may factor in here and these are just suggestions .
i would try d-limone ,cran berry extract to reduce ph , a therapitic dose of propolis, i would find the local apothicary ,mix some andrographis ,smilax and japonese knotweed ,and goldenseal, and palo azul if kidneys are affected .
i would order bees from california for 13$ and activate the immune system with bvt ,cats claw ,reishi and lomatium ..
a friend who had lesions healed with bvt and herbs .fight silver fight .He gives us strenghth to run and not be weary.
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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posted
Silver .. so sorry to hear this. On and on and on.
Which abx are you taking? I forgot.
-------------------- --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 <<<<< bluelyme,and Lymetoo >>>>>,
Yep, finances are a factor, The last two differnt ABX I was taking were Bactrim,and then they switched me to two weeks of 2000 Mgs.[yes two thousand] a day of generic Keflex.
There was hope of it helping,and switching ABX may slow down the allergy/sensitivity at least somewhat.
I was also using, Children's Benadryl to help keep [ABX] symptoms under control. I am still using it, wiht other meds, to keep the stuff from settling in my chest too. It did/does help with serious itching, and sore throat.
I have taken Ciprofloxacin[not good as we know,can't take it now, bad joint pain, cramps], Nitrofurantoin [problems with that too, more joint pain cramps, overly fast heart rate].
The Bactrim[ which gives me very nasty headaches, and now the Cephalexin/Keflex. This has been going on Since Dec.2015. I wont stop fighting, but I am very very weary.
And with all that is happening with TrekCoord, it's been very rough for us both. We say ,at night: 'I'll see you in the morning',[the other one] 'unless I see you first'... both praying for God's mercy, and grace, and for The Lords LovingKindness and Favor.
The Light and Life and Love from Him our Creator are a part of His Healing! Which we also pray for, for ourselves, our LymeFamily, and other friends and Family we know are struggling.
I've said before: I don't mind if it's Mud, Magnets, Medicines[including supplements] or Miracles.
I need a healing, I'll keep going and fighting and trying what I can until I can't anymore. Healings don't necessarily all happen instantly as we know. I wish they did, but I wont give up.
Also,I realize there are different belief systems represented on LymeNet , but my Faith keeps me from giving up. As well as the Faith of many who pray for those of us who are fighting these illnesses.
Each time some one prays for us, and sends encouraging words...I truly believe it helps us. And I greatly appreciate the tho'ts and ideas, that our Lyme Family shares.
Lymetoo,and Bluelyme I appreciate the tho'ts and prayers. I don't have all the suggestions you mentioned Bluelyme, but I use many of them. So it helps to know I am somewhat on the right track!!!
I'll try to check back in later... thank you both for your replies!
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
IGeneX- Test collection kits are available with shipping materials at no charge from IGeneX, Inc. – Call (800) 832-3200 or send an e-mail to [email protected]. Please include your name, complete mailing address and tests to be ordered.
450 Urine 87800,87801 LYME
465 Urine (Pooled from 3 samples) 87800,87801 LYME
~ ~ ~ ~ ~
This program MAY/MAY NOT be able to assist you with costs for tests.
Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi <<<<< Tinny' >>>>>,
Thanks for the info' links, that way we can check costs,and if they'll take Medicaid [er...'Madicaid' I call it now].
So far to get any pay help I've had to have a Doctor prescribe the meds' and they need to be in Amerigroup's List of approved Drs.
We'll have to see if the test(s) would be affordable if Medicaid wont cover them. They refused to do a Neurological test, A Dr. needed for Diagnoses.
' Amerigoop Madicaid' sets a price and if the Doctor wants more than their price recomendation, the Doctor can refuse to further treat you.
It was set up,so the Doctor is not allowed to accept money from the patient, so if they don't agree that the price is feasible for the test, they just politely excuse the patient.
It happened to me,and it has happened to others. Still, I appreciate the information links. If we find something test wise that is affordable for us, out of pocket, at least we could gain some info' and insight as to what this is or is not.
It gives us somewhere to start, and to find out pricing, and what Medicaid, will or wont pay. So far, the two prescription meds' I take on a regular basis,and the ABX,have been at no cost to us.
I grudgingly would agree that Amerigroup Medicaid, is at least marginally better than nothing. Did not like being forced into getting that particular Insurance, but it was that or be fined.
Again thanks so much,for the links, TrekCoord and I can find out about costs, and what is or isn't doable thru Medicaid.
<<<<< Tinny >>>>> hugs headed your way for the help!
Hope you had a great Thanksgiving!!!
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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posted
I've had UTI for 2 years non-stop. It was a nightmare, I would choose anything over UTI .countless urologists visits, urine cultures, abx and herbs treatments- all of this before I knew it was Lyme. The symptoms stopped drastically once bartonella was gone. Although bunch of other co-infections were still there. Treat bartonella- You will be relieved.
Posts: 443 | From Montreal, Canada | Registered: Oct 2009
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posted
Where do you live in Idaho? This may sound a little weird but I would look up a biomagnetism practitioner in you area. I am actually a certified practitioner as well and I can ask in my group if anyone is in Idaho and get back to you if you are interested.
There was a year when I was in and out of the clinics all the time with bladder/vaginal thing. Nothing worked. No meds, antibiotics, etc until I did magnets. It worked! I had been so miserable for almost a year and it was gone and it never came back.
Will it cure chronic lyme, it hasn't me but I have been ill for 10 years and the more chronic things become the harder they are to treat. But it can resolve urinary issues and other stuff. I have experienced and it and seen it work with others as well.
It's worth a try if you can find someone near you. Basically it will neutralize the PH of the area and bacteria cant live there.
Here is some info. http://www.biomagnetismusa.com/ Looks like you have all the good natural remedies on board. Garlic may be helpful too.
Hang in there!
Posts: 137 | From ATX | Registered: Nov 2011
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posted
Oops. Ok, Thanks Lymetoo. Yes, I can find out who's in Nevada. Thanks
Posts: 137 | From ATX | Registered: Nov 2011
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hello <<<<< anuta, keikko, and Lymetoo >>>>>,
Thanks for replies, thot's, suggestion and info link.
I do take daily Garlic capsules, need to look up Uva Ursi , and I also use the D-mannose at least three times a day.
Later this week, finances permitting, I have to get more of several supplements that I take on a daily basis. TrekCoord and I can check on the Uva Ursi as well.
I have some magnetics' we've used some specialty ones off and on for several years,. I bookmarked the link for the Bio-magnetics in Favorites so we can study it further.
I was blessed to be given a book 'Beyond Kegels, that can help with IC and UT problems, so with that, and hopefully getting some better lab tests run[ if we can do the Igenex ]I can find out more what is going on.
Will be checking back w/ the ID doc' as well, he ws nice enough,but I'd be very surprised if heis willing to test the Urine for Lyme and Co-infections. Since now they are saying it is 'Multiple Organisms'rather than just the Kleb. Pneu.
I know what ever it is, it is robbing my energy.I tripped last night, and have sprained ankles, and sprained wrist, Trying to get to some of my Christmas decorations.
This time I did the Lyme Lurch shuffle with a floor lamp, that seems to have better balance than me.
At least it kept me from landing on the floor,and hitting my head on a table. And no I wasn't climbing...evidently there was invisible dust bunnies, hiding out among the boxes.
So my tendonitis is flared big time,and I will be mostly resting for a couple days. Have a luncheon meeting today, and after that we'll be resting unless the Doc' calls me in.
[Also if the Cardiologist, actually calls TrekC' in we'll take care of that too, but that usually takes awhile to get the appointments].
Have a phone appointment over the Estate matters tomorrow ,but that shouldn't be to big of a deal.It is just us getting on the same page as our lawyer so to speak. We'll see what is up...
Gotta close for now, but I appreciate the info', hugs,prayers and commiseration from each of Y'all.
Jus' Sprained 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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posted
HI. I'm sorry to hear you hurt yourself on top of all the other stuff going on!
I found out there are two biomagnestism therapists practicing in Nevada.They are both in Las Vegas. I can get their numbers if you are interested.
I don't think it's something you could do yourself. They would muscle test your feet and find pathogenic pairs. Basically each pathogen has pair in the body, sometimes more than one and there are reservoirs as well. So it's sorta of an art sorting it out. The magnets are placed in pairs..positive and negative and they are often not in the same location on the body. They also have to be a certain strength.
Anyway, just a little info.
I hope you get some relief soon!
Posts: 137 | From ATX | Registered: Nov 2011
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi <<<<< keikko >>>>>,
I am very interested, could you PM the Phone#'s to me,for the Bio-magnetism therapists? We could find out if they take Medicaid or what sort of expenses would be out of pocket.
I don't know,as there are many things 'Amerigroup'Madicaid' will not pay for. But like Igenix it would be worth investigating.
Gotta go for now will try to check back later on. Thank you for the info' I greatly appreciate it.
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
Hi <<<<< LymeNet family >>>>>,
Finally heard back from ' Dr.Overly Vague' the ID Doc'.
"well Gee, we've known since a couple days after your 1st test with us [Nov. 1st]That there wasn't any problem,. The Multiple Organisms was just simple contaminants.
Oh really 'Dr.Vague' why didn't you tell us it wasn't anything serious, the colony...is just contaminants?
Oh I see, so I shouldn't have taken those 2000 Mgs of Keflex for 2 wks., the ones you prescribed me???
He actually said we shouldn't have had you take the prescription. Well then why didn't you call and have me stop Dr. Vague.
So now do I get to sue,for the weeks of pain, the intermittent Diarrhea and bleeding??? Whatever report my PCP gave 'Dr. Vague',I'm sure that the Lyme and Co's was prominently mentioned.
They made sure it was for the Urologist,who couldn't do anything for me. Now the ID Doc says the same. Sorry, it's contaminants, shouldn't have had you take all that ABX.
I am grateful,that the infection is supposedly gone, but not convinced,as per how I am feeling. Well at least, I am not coughing so much like I had been, seems like the Bronchitis is under control.
And I can hope the UTI is actually gone, and I don't end up w/C Diff',I pray it is over. Thanks for the help,encouragement,links, and tho'ts and prayers.
And <<<<< Keikko>>>>> I'm still interested in the Biomagnetic Therapy. If you have the chance to send the phone#'s by PM. etc.
I can still check on that, and Igenix costs too, with the info' y'all have posted for me.
Thanks again each replier!
Jus' Silverwolf 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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-------------------- --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 >>>>>,
The IC is a definite problem,even 'Dr. Vague' realized that, but why didn't they tell us on Nov. 3rd or 4th, hey the infection is gone. Do not take the Keflex right now.
He knew the first week of November,and didn't tell us until the second test came back with the Mutliple organisms bit. We found out today,when the first test was done Nov.1st, the second one on the 17th.
That means the Bactrim, before we went to him,had finally done the trick. Because of this, I wonder If I will ever be able to tolerate the Keflex again. Sometimes with bad respiratory issues,it was all that would work.
I am praying that the infection is truly gone and doesn't come back. Now to get rid of the intestinal/colon issues from the ABX.
I am going to pursue most of the info' posted here for me, I cannot go thru this again,repeatedly. Even if we cannot afford some of the testing right now, it is a place to start.
Your friend said her case was mismanaged, I hear ya there!
Thank you <<<<< Lymetoo,and all who prayed, and/or put up links and ideas for us.>>>>>,
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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Feel better:)
Posts: 137 | From ATX | Registered: Nov 2011
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me
Frequent Contributor (1K+ posts)
Member # 45475
posted
Geez, Silver. I'm so sorry you are still having such a rough go.
Have you been able to work up to thirty minutes of pelvic floor exercises daily yet, or is it too painful?
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi <<<<< keikko,and me >>>>>,
Keikko, thank you, PMed back!
Me, I haven't been able to do the exercises,yet, but am looking forward to starting, now that the 'infection' is supposed to be over with. Still having some issues with leftover symptoms from all the ABX.
At least now, I can try some things to see what helps. I know I repeat this phrase, but this is one of the reasons,I love LymeNet. Sometimes when we just don't know where to turn next... someone posts info' that helps!!!
Thanks again so much, to each person that posted ideas,sent info' and such. May God bless you,and life get much healthier for us all!
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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