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 The Connection Between Lyme Disease and IC

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PostSubject: The Connection Between Lyme Disease and IC   Tue Apr 05, 2016 3:47 am

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Strandsidemol



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PostSubject: Re: The Connection Between Lyme Disease and IC   Tue Apr 05, 2016 3:17 pm

Looking down this route myself now. I accepted part of a group on facebook and wrote out a post, didnt expect the response i got. There were others who had been told they had ic but then years after having other symptoms tested positive for lyme and lyme co infections. After looking at how some of these co infections can be passed around got me thinking it is possible. I also ha a nasy bite by something never saw what it was but i had a large red circle rash on leg when got back off holiday went to dr he gave me some cream saying it is ringworm. Not so sure im that convinved now. I dont just get ic symptoms its like my whole body is disaligmed, my mind is a mess and gets stuck, recently had an attack of hives, always feel like a got flu and today im still in bed cos im struggling to move my legs!! Sick of feeling so crappy all the time. Im 37 not 77 yet... im losing the best years of life
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PostSubject: Re: The Connection Between Lyme Disease and IC   Tue Apr 05, 2016 9:58 pm

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Last edited by mybladderhurts on Mon May 16, 2016 12:49 am; edited 1 time in total
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Strandsidemol



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PostSubject: Re: The Connection Between Lyme Disease and IC   Wed Apr 06, 2016 2:55 am

I do think there could be connection and i think its worth exploring
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dantheman



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PostSubject: Re: The Connection Between Lyme Disease and IC   Wed Apr 06, 2016 5:55 pm

How do we get tested for little disease and if we do have it how can we treat the ic. I remember having a tick behind my ear about 22 years ago.is there treatment for Lyme disease
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PostSubject: Re: The Connection Between Lyme Disease and IC   Wed Apr 06, 2016 5:56 pm

How do we get tested for little disease and if we do have it how can we treat the ic. I remember having a tick behind my ear about 22 years ago.is there treatment for Lyme disease
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Strandsidemol



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PostSubject: Re: The Connection Between Lyme Disease and IC   Wed Apr 06, 2016 7:20 pm

Frylabs are in US and Armin labs in germany but other than that o dont know. These test for Lyme and Lyme co-infections
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PostSubject: Re: The Connection Between Lyme Disease and IC   Fri Apr 08, 2016 12:01 am

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Last edited by mybladderhurts on Mon May 16, 2016 12:50 am; edited 1 time in total
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Tina2



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PostSubject: Re: The Connection Between Lyme Disease and IC   Sun Apr 10, 2016 7:11 am

How interesting, when I was much younger about 20 years ago I got bitten by a tick, in those days I didnt even know what this thing attached to my stomach was. My husband pulled it out but I remember having a headache and feeling unwell for about 3 days.
I had discounted Lyme, first it is claimed there is no Lyme in Australia ( though people have tested positive when sending samples to the US) and second the cases you see on TV are people who have very severe symptoms, and can barely get out of bed.
Has the tick bite left some sort of infection ? what an interesting thought.
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Tina2



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PostSubject: Re: The Connection Between Lyme Disease and IC   Sun Apr 10, 2016 7:17 am

Is it worth considering puting up a survey on here asking people just to say yes or no to wether they have been bitten by a tick ?
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Strandsidemol



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PostSubject: Re: The Connection Between Lyme Disease and IC   Sun Apr 10, 2016 2:29 pm

I was bitten by something a few years ago but not sure by what, had a big red rash but doctor said was ringworm. I have been having doubts. I never saw what bit me and can never remember seeing a tick.

Last night and this morning i had that foul smelling urine back Sad
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Tina2



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PostSubject: Re: The Connection Between Lyme Disease and IC   Sun Apr 10, 2016 7:51 pm

some interesting reading https://www.facebook.com/LymeDiseaseAustralia/posts/1153453874695107

http://www.lymedisease.org.au/wp-content/uploads/2016/04/sub528_LDAA.pdf

There are 108 pages in the paper so this is just a tiny couple of paragraphs

The presence of Borrelia, the causative agent of Lyme disease, was established in Australian fauna in
1959 and human cases of Lyme disease have been reported since the early eighties. Australian
authorities ignore this evidence. No investment into research on Lyme disease, its causative agent or
its aetiology has occurred for twenty years. In that time there has been seven new Borrelia
genospecies isolated internationally. Recent investments into research that isolated organisms in
ticks show that Australian ticks are full of pathogens; many of them are known to cause disease. Yet,
there has been no investment in, or priority placed upon, the clinical study of patients.
The recommended diagnostic protocols, processes and tests are flawed. The pathology tests
recommended are not standardised across laboratories. The criteria used to determine a positive
Growing evidence of an emerging tick-borne disease that causes a Lyme like illness for many Australian patients Submission 528
7 | Page
test result is not defined. Some patients’ immune systems don’t function; they have trouble
producing the antibodies needed for a positive test. Australian laboratories produce conflicting test
results. Patients routinely send their blood overseas for testing in specialist laboratories. Overseas
laboratories and the results they produce are routinely dismissed. They are said to be unaccredited,
yet they participate in an international standards accreditation scheme that is mutually recognised.
A progressive and contemporary approach to this problem is urgently overdue. Recent
developments in molecular technologies and next generation sequencing provide for new frontiers
in discovery. There is acknowledgment that research is needed. The research priorities are
established but the funding is not. Other emerging and infectious diseases establish important
precedents for swift action, yet when it comes to ‘Lyme’ there is only bureaucratic inertia.
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Strandsidemol



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PostSubject: Re: The Connection Between Lyme Disease and IC   Sun Apr 10, 2016 8:27 pm

I know been keeping in all this in mind too... just started on Lauracidin, im not herxing yet!! Lol. It seems to make all lymies herx. Still keeping an open mind in all of this.
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dantheman



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PostSubject: Re: The Connection Between Lyme Disease and IC   Mon Apr 11, 2016 12:05 pm

If the cure for Lyme disease is high dose vit c then I'm stuffed and so are most icers because i can't tolerate Vit c even in small doses. I wonder how the people who's ic went into remission copied with high dose iv vit c.
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Strandsidemol



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PostSubject: Re: The Connection Between Lyme Disease and IC   Mon Apr 11, 2016 1:55 pm

All these "Autoimmume" conditions need to build up immune system. Im doing vitamin d3 and trying small amounts of vit c.

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Tina2



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PostSubject: Re: The Connection Between Lyme Disease and IC   Fri Apr 29, 2016 10:12 am

More on Lyme
http://www.dailymail.co.uk/health/article-3563844/Lyme-disease-ticking-time-bomb-Leading-expert-explains-life-wrecking-illness-spreading-protect-yourself.html
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dantheman



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PostSubject: Re: The Connection Between Lyme Disease and IC   Fri Apr 29, 2016 2:35 pm

I feel like this disease is impassible.
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dantheman



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PostSubject: Re: The Connection Between Lyme Disease and IC   Fri Apr 29, 2016 2:37 pm

I feel like this disease is impassible and impossible. I also feel so fatigued and sick all the time. I can't take high dose vit c it will kill my bladder. No vit c won't work for me so im rooted.
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Strandsidemol



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PostSubject: Re: The Connection Between Lyme Disease and IC   Fri Apr 29, 2016 2:43 pm

Oh dan its just crap isnt it... bless you i know how you feel... getting fed up too
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dantheman



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PostSubject: Re: The Connection Between Lyme Disease and IC   Fri Apr 29, 2016 3:31 pm

Seems like the Americans are also doing alt if research. They are starting 2 new drug trials and 1 new multi disciplinary study too. Multi disciplinary is the way to go i reckon. Check it out at

http://www.mappnetwork.org/
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Tina2



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PostSubject: Re: The Connection Between Lyme Disease and IC   Fri Apr 29, 2016 5:26 pm

Thanks again Dan for sharing your research.

" Nothing " is impossible or impassible Dan, it just seems that way because you are so sick. With this disease you have ups and downs, and when you are down we are all here for you to lean on.

I am wondering if you have CF as well as IC ? Yet again though CF is something many GPs dont accept exists.

Try to focus on the fact that things are starting to heppen, research is starting to move forward. A cure is coming I am sure of it, it just may take a little while.

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sugajay



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PostSubject: Re: The Connection Between Lyme Disease and IC   Sun May 29, 2016 1:41 am

A nurse practitioner in the US who cured her own IC now treats other sufferers and has found that the vast majority of her patients are infected with the bacteria bartonella. An individual can get it from any biting insect, not just ticks. Cats frequently carry it and cat owners can easily become infected when bitten or scratched. Reliable testing has only existed for several years with the establishment of Galaxy Diagnostics in North Carolina, USA. My daughter has suffered with IC for at least 12 years and is finally being treated for bartonella. Her bladder is slowly improving with the first indication being that she is now able to void without straining.

Bartonella can go anywhere in the body and hence cause inflammation anywhere. The leading researchers think it is a likely trigger for many chronic health conditions including autoimmune conditions, psychiatric conditions, malignancies, etc.
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Tina2



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PostSubject: Re: The Connection Between Lyme Disease and IC   Sun May 29, 2016 9:54 am

I sent samples all the way from Aus to the US to Pathogenics for PCR Level 2 testing and it didnt show Baronella, just Klebsella and ecoli. I am taking D Mannose to clear the Ecoli but still have symptoms it is a never ending battle to try to at the least get to a stage where you can at least function on a daily basis, thoght I admit there are days when you feel like giving up.

One of my greatest wishes is for "understanding caring " GPs who have at least "some" understanding or better still and interest in IC but it seems IC is very much in the too hard basket.
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sugajay



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PostSubject: Re: The Connection Between Lyme Disease and IC   Sun May 29, 2016 11:26 am

Pathogenius lab doesn't test for bartonella. If you want to be tested for it you should use Galaxy Diagnostics in North Carolina. Since finding bartonella in blood specimens is extremely difficult, the lab offers a three draw test in addition to one draw. It also tests for antibodies to the different strains of bartonella. My daughter tested very strongly positive for antibodies for two strains of bartonella but the bacteria wasn't detected in her blood specimens. The difficulty in finding this stealth pathogen is precisely why so little has been known about what chronic conditions it may cause until now.
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Tina2



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PostSubject: Re: The Connection Between Lyme Disease and IC   Sun May 29, 2016 12:21 pm

we are in Australia and to be honest our testing ability here is still in the dark ages. No way I could afford to send more samples to the US sadly, but I hope that more is looked into about this Bartonella. Has this got something to do with Lyme ?
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