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» LymeNet Flash » Questions and Discussion » Medical Questions » Still struggaling with ic and vagial symptoms not sure how much more I can take

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Author Topic: Still struggaling with ic and vagial symptoms not sure how much more I can take
tricia386
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Over a year of dealing with vaginal and ic symptoms, not sue how much longer I can deal...

--------------------
Lyme activated in April 2010 by gardasil vaccine.
DX: Lyme,Babs,Myco,Bart 11/10
Treatment Started: 3/28/11

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surprise
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I'm sorry to hear that- did you ever try getting the Vancomycin?

--------------------
Lyme positive PCR blood, and
positive Bartonella henselae Igenex, 2011.
low positive Fry biofilm test, 2012.
Update 7/16- After extensive treatments,
doing okay!

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tricia386
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No they put me on bicillin injections bc vanco has to be down by ivs I'm such a basket case

--------------------
Lyme activated in April 2010 by gardasil vaccine.
DX: Lyme,Babs,Myco,Bart 11/10
Treatment Started: 3/28/11

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surprise
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My daughter got 3 weeks of oral Vancomycin one time...

I'm sorry. I just remember when you posted your test results with susceptible and resistant drugs based on the cultures,

and 1 strain very clearly said (to me) that Vancomycin was the only drug able to clear it- and Vancomycin was also listed

as being able to clear all your other strains.

Hang in there-

--------------------
Lyme positive PCR blood, and
positive Bartonella henselae Igenex, 2011.
low positive Fry biofilm test, 2012.
Update 7/16- After extensive treatments,
doing okay!

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tricia386
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No
Your right. And I pushed and pushed and the doctor said no.

--------------------
Lyme activated in April 2010 by gardasil vaccine.
DX: Lyme,Babs,Myco,Bart 11/10
Treatment Started: 3/28/11

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GretaM
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Did the doctor say no because of interactions with other medications that you're taking, or underlying medical conditions that will be adversely affected by IV Vanco?

Because unless there is a good reason, then I don't understand how your doc is able to pick and choose which abx work.

I'm pretty sure the bacteria have the upper hand in that...

Perhaps it's time for a new doctor.

Obviously your doc has not experienced IC. Which is a completely hel+ish existance.

Can you go to emergency at the hospital?
You have multi resistent bacteria. Do you have a fever and are you peeing blood? If so, go to emerg. That's what it took for me to get IV for IC.

Especially when I explained that I had tried other abx consecutively.

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tricia386
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Well I have both an llmd and an llnp which works just on ic. She thinks it's bicillin to do it I'm so confused. She said it biofilms making me sick.

Symptoms
Res swollen irritated vagina and vulvar and itching
Bladder pressure and pain
Hot urine
Frequency and urgency

--------------------
Lyme activated in April 2010 by gardasil vaccine.
DX: Lyme,Babs,Myco,Bart 11/10
Treatment Started: 3/28/11

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surprise
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Dr.s typically (most of the time) do not want to give out Vancomycin, since it's such a 'large gun' and if a very serious

infection occurs in your life, they don't want this antibiotic to have become resistant-

however, this may be your large infection in your lifetime where you need the 'big gun'.

--------------------
Lyme positive PCR blood, and
positive Bartonella henselae Igenex, 2011.
low positive Fry biofilm test, 2012.
Update 7/16- After extensive treatments,
doing okay!

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tricia386
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I just don't know what to do. My llmd thinks its lyme again this wasn't one of my symptoms and it popped up over night .

--------------------
Lyme activated in April 2010 by gardasil vaccine.
DX: Lyme,Babs,Myco,Bart 11/10
Treatment Started: 3/28/11

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DKat
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This site will not give you a cure, but it may help with pain managing suggestions.

http://www.ic-network.com/conditions/interstitial-cystitis/managing-ic-flares/

It's great your doc thinks it's lyme - according to one LLNP 80-90% of IC is lyme/co.

Now they need to do something for you to bring healing and relief! Unrelenting pain at this level would bring superwoman to her knees.

For 'outside' pain, a warm tub does help calm the fire. I found baby wash was the only soap I can tolerate.

My PT suggested Vitamin E or coconut oil applied to outside area to help coat & heal.

I think I read you're taking vitamin C and that would increase my pain 10 fold as would any antibiotic at this time. (We're working on opening detox pathways 1st.)

Sorry there's nothing here to bring healing, but maybe you can find something to bring relief.

--------------------
Ecclesiastes 4:9-10 Two people are better off than one, for they can help each other succeed. If one person falls, the other can reach out and help.

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tricia386
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But I have strep showing up in my bladder

--------------------
Lyme activated in April 2010 by gardasil vaccine.
DX: Lyme,Babs,Myco,Bart 11/10
Treatment Started: 3/28/11

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DKat
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strep & biofilms? Do they agree that bicillin will eradicate at least the strep .. it won't hit the biofilms, will it?

Plus, do they realize how much agony you're in? Can they help with that at all?

It seems you're being tested ... & waiting ... more testing ... more waiting & all the time getting worse. You have multiple supplements & meds prescribed, but nothing is helping. Something's missing.

--------------------
Ecclesiastes 4:9-10 Two people are better off than one, for they can help each other succeed. If one person falls, the other can reach out and help.

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Lymetoo
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Vitamin C? Stop that if possible! I know it makes ME worse!

--------------------
--Lymetutu--
Opinions, not medical advice!

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Pocono Lyme
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You need vanco..

I would take my results to an infectious disease doc.

My LLMD is an ID doc and was furious when initially looked at my test results from a "top LLMD in the country/world".

Test after test after test showing the same issue and nothing done for years!

This ID doc addressed it immediately.

I don't think you even need a LL ID.
I feel for you.
Call today. Please. You need relief yesteryear.

--------------------
2 Corinthians 12:9-11


9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me.

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tricia386
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Pocono Lyme - did u have these symptoms.

--------------------
Lyme activated in April 2010 by gardasil vaccine.
DX: Lyme,Babs,Myco,Bart 11/10
Treatment Started: 3/28/11

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jjekblad
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I have had a burning bladder since May. Ive now been told I have Mycoplasma and probable Lyme

Still waiting to see a LLMD. I take Elmiron & Elavil for the bladder pain and it helps

Also try drinking a glass of baking soda in water, it will alklanize your urine.

Are you trying the low acid diet? The diet stinks but it helps.

Most say they can get off the diet when symptoms resolve.

message me if you have any more questions

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Pocono Lyme
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Tricia,

No I had a different issue that apparently the previous LLMD didn't feel comfortable dealing with.

I'm thinking your LLMD and LLNP aren't comfortable with ordering vanco.

I agree with the reply by surprise.


You obviously have an infection. If I remember correctly, 3 different ones or strains?

I do however remember that the only thing they were susceptible to was Vanco. Nothing else.

A primary care physician, ID doc, OB/GYN doc?

--------------------
2 Corinthians 12:9-11


9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me.

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tricia386
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Going to an obgyn today which me luck

--------------------
Lyme activated in April 2010 by gardasil vaccine.
DX: Lyme,Babs,Myco,Bart 11/10
Treatment Started: 3/28/11

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Pocono Lyme
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Good for you!
BEST of luck!!

[group hug] Praying this is the answer.

--------------------
2 Corinthians 12:9-11


9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me.

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tricia386
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Well that got me nowhere they said strep b and d are normal flora but I got dxed with a yeast infection

--------------------
Lyme activated in April 2010 by gardasil vaccine.
DX: Lyme,Babs,Myco,Bart 11/10
Treatment Started: 3/28/11

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Lymetoo
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Maybe Diflucan will help the yeast and the IC.

--------------------
--Lymetutu--
Opinions, not medical advice!

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tricia386
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I cant handle this anymore I clearly have an infection and no one will listen.
My urine is pipping hot and I am peeing out white blood cells

--------------------
Lyme activated in April 2010 by gardasil vaccine.
DX: Lyme,Babs,Myco,Bart 11/10
Treatment Started: 3/28/11

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lax mom
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tricia: you need a med that was listed on the susceptibility sheet. There is no guessing it might be Lyme causing the symptoms. You have a proven infection with meds that have proven to be able to kill it in the lab.

I don't understand this.

When I had an infection in my blood, the med that came back on the susceptibility list, after the culture results finally came back after I was already released, was a Cephalosporin.

I am allergic to Cephalosporins. I break out in hives. The ID Dr said "you still HAVE to take it. You have to just take Benadryl if you get hives." The cons of not taking it were too great.

Can you take your lab result with the susceptibilities and get to an ID Dr, even the ER? This issue is not Lyme. Obviously. Even an ID Dr would agree.

As bad a reputation they have for Lyme, ID Dr's do serve a purpose with obvious infections. Or even a Urologist, but they take longer to get an appt.

I think your best bet is the ER with lab result in hand.

This Dr is not uncomfortable with Vancomycin.

Last year, when my husband was on IV Rocephin. He switched briefly to IV Clindamycin. We were told, if he didn't respond, he could switch to Iv Vanco. It didn't get to that point because he didn't need it.

--------------------
♥ ♥ ♥ ♥ ♥
(aperture)
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=115161;p=0

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tricia386
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I brought my results to the urologist today well a urogynocologist and they said that Strep B and Strep D are normal flora in your Vagina and it must be a contaimation and dismissed it

--------------------
Lyme activated in April 2010 by gardasil vaccine.
DX: Lyme,Babs,Myco,Bart 11/10
Treatment Started: 3/28/11

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lax mom
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Based on your constant torture over the past year +, they needed to do a sterile catheter sample if they felt the previous sample was contaminated.

--------------------
♥ ♥ ♥ ♥ ♥
(aperture)
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=115161;p=0

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surprise
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I also was thinking ER. Seems that's where they keep the Vancomycin these days!

Sending good thoughts--

--------------------
Lyme positive PCR blood, and
positive Bartonella henselae Igenex, 2011.
low positive Fry biofilm test, 2012.
Update 7/16- After extensive treatments,
doing okay!

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lax mom
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I agree surprise. ER with the lab result and sensitivities testing.

--------------------
♥ ♥ ♥ ♥ ♥
(aperture)
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=115161;p=0

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tricia386
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So scared my er copayment is 1000

--------------------
Lyme activated in April 2010 by gardasil vaccine.
DX: Lyme,Babs,Myco,Bart 11/10
Treatment Started: 3/28/11

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Pocono Lyme
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I'd resort to self medicating but that's me.
I've done pet meds. and have ordered antibiotics online in the past when desperate.

OTC triple antibiotic ointment, coconut oil topically?

Others may have ideas for topical use products.
Something antibacterial, antifungal, antiviral yet soothing, not harsh.

Strep is a common bacteria in that area but it seems to have taken over and needs to be balanced with other normal flora.

I was trying to find something for you and came across this site.
http://www.medhelp.org/posts/Womens-Health/Vaginal-Strep-in-a-Non-Pregnant-Woman/show/32360

Of course you have to do what's comfortable for you. Some of their ideas sound painful to me. Not painful if not dealing with your symptoms but I think some of the things would be painful for you.

Another link.
http://www.livestrong.com/article/162340-antibiotics-for-strep-b/

I'll search more for you when up to it.

--------------------
2 Corinthians 12:9-11


9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me.

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tricia386
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Thank you so much for everyone's support this s my 4 th day out of work and i have no support from fiancé or mother

--------------------
Lyme activated in April 2010 by gardasil vaccine.
DX: Lyme,Babs,Myco,Bart 11/10
Treatment Started: 3/28/11

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tricia386
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I am currently doing bicillin injections 2x a week and augmentin and spectra banderol mbb1 I also have rocphein Injections I'm wondering if I should just screw it and add them in

--------------------
Lyme activated in April 2010 by gardasil vaccine.
DX: Lyme,Babs,Myco,Bart 11/10
Treatment Started: 3/28/11

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Catgirl
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Tricia, I don't know if you saw my other post (UTI thread), but I had horrible I/C and UTI issues that no doctor could resolve. All the diflucan, bactrim, cipro and sugar/carb free diet did not resolve it. Parasite treatment has gotten rid of it for me. I just posted this on the following thread:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=125830;p=0

--------------------
--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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RC1
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I just came across this thought it might be helpful there is a section on I/C

http://thelowhistaminechef.com/

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Lymetoo
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Coconut oil would help, it seems.

--------------------
--Lymetutu--
Opinions, not medical advice!

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Pocono Lyme
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I would try the coconut oil topically to the area.

It seems like it would be the most benign treatment at this time maybe soothing in addition to its antimicrobial properties.

--------------------
2 Corinthians 12:9-11


9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me.

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map1131
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Coconut will soothe the burn and itching. It will really help the vagina burn from your urine too.

I use heavily at bedtime especially.

Pam

--------------------
"Never, never, never, never, never give up" Winston Churchill

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lax mom
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Nexxus suppositories were recommended to me (can be used vaginally or rectally):

http://www.retailbiopure.com/NEXUS-5-Suppositories.html

--------------------
♥ ♥ ♥ ♥ ♥
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http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=115161;p=0

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tricia386
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could the infection in my bladder be causing my vaginal symptoms?

--------------------
Lyme activated in April 2010 by gardasil vaccine.
DX: Lyme,Babs,Myco,Bart 11/10
Treatment Started: 3/28/11

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tricia386
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I literally have no help from my mother or any other family members except finacially I am only 27, I have a fiance we have been together for over 7 years but his patients are starting to wear thin. Last Aug i was doing great we were making great head way then i got struck with this whole vaginal/IC like thing 18 months into treatment.

Besides my one friend I have met on here I have no one to talk to it about. Today my mom said I was being a pain in the ass....I feel so alone and it sucks. I dont know what to do anymore...

--------------------
Lyme activated in April 2010 by gardasil vaccine.
DX: Lyme,Babs,Myco,Bart 11/10
Treatment Started: 3/28/11

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beths
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That's horrible...I don't think anyone who hasn't had vulvodynia "gets it". I had it for almost a year...it suddenly went away with treatment.

I may get a little flare here and there- I first check my pH-if it's high, I use homemade boric acid and coconut suppositories or vinegar and water to bring it down. I try to drink a lot of water.

At one point I was on neurontin for the pain.

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tricia386
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how do I check the PH?

--------------------
Lyme activated in April 2010 by gardasil vaccine.
DX: Lyme,Babs,Myco,Bart 11/10
Treatment Started: 3/28/11

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Lymetoo
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quote:
Originally posted by tricia386:
could the infection in my bladder be causing my vaginal symptoms?

-
I would say yes, but I am not an expert. Ask someone on one of the IC boards.

--------------------
--Lymetutu--
Opinions, not medical advice!

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unsure445
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I would try an alternative practitioner. Any top notch Chinese medicine doctors near you that could read your pulse and get a handle on what is happening?

Or maybe going to an acupuncturist for several consecutive visits, close together, might get things improving.

Sometimes these bugs cause hyper coagulation and the medicine you are taking doesn't get where it needs to go.

Its so complicated… Did you start D-mannose?

--------------------
unsure445

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tricia386
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yes I tried Dmannose no luck! [Embarrassed] ( I am in Albany Ny anyone know of anyone

--------------------
Lyme activated in April 2010 by gardasil vaccine.
DX: Lyme,Babs,Myco,Bart 11/10
Treatment Started: 3/28/11

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Lymetoo
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For how long?

--------------------
--Lymetutu--
Opinions, not medical advice!

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tricia386
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3 weeks. I just don't know who to turn to anymore

--------------------
Lyme activated in April 2010 by gardasil vaccine.
DX: Lyme,Babs,Myco,Bart 11/10
Treatment Started: 3/28/11

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Lymetoo
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Tricia.. I just remembered something important. D-Mannose is the active ingredient in cranberry juice that KEEPS THE BACTERIA FROM ADHERING TO THE WALL OF THE BLADDER.

So it would be very important to keep taking it. I cannot tolerate cranberry juice due to my IC. Taking the D-Mannose has prevented infections for more than 3 yrs now. (for me)

--------------------
--Lymetutu--
Opinions, not medical advice!

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OtterJ
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You go to a bigger pharmacy, or better yet, call them first, to see if they have strips that you

place in your urine to check acidity or basic-ness. My understanding is the strip changes color so you

will know. You may have to pee into a collection thing sometimes called a 'hat'. Ask the pharmacist

your questions before you take it home to be sure you understand how everything works. See if they have info online about these strips. I would google urine acidity strips or something like that.

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map1131
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Yes, the urinary infection will get into the vagina. Location, location, location.

Tricia, it will inflame the vulva and entire region. Sorry people, but this young lady is struggling. I'm sure it's not just Tricia and myself having this issue.

I knew from the beginning (Nov) that this was not an ordinary e-coli infection. TG, Tricia posted positive test on enterococcus bacteria, because it certainly helped me identify who I might be at war with.

I did d-mannose double and triple rda, capsules and powder form with no help for at least 3 mths.

You are not a pain in the ass to us. Patience my dear, your lyme friends will lead you to something.

Pam

--------------------
"Never, never, never, never, never give up" Winston Churchill

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tick battler
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Tricia -
I had these symptoms when our house well became contaminated with parasites and bacteria from groundwater last year. I constantly had those issues until we figured out that our water was bad. In one case Cipro helped, another Bactrim helped, and tindamax helped another time. I used these before I discovered MMS, which is very effective for all types of infections.

I agree you have an infection. I also agree you should go to someone good for muscle testing or EDS testing to see what infection you have and what will help it. Third, I would recommend trying MMS - it is very effective for all types of pathogens. Just do your research to make sure you don't take too much...dose is very important.

If you are not getting help from mainstream docs who have faulty testing, you need to think outside the box! Go to the facebook page CDHealth and ask if you think the CD (MMS) could help your issue. You will get tons of help and good advice. My similar issue is gone now and the CD helped me so much.

tickbattler

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Judie
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"could the infection in my bladder be causing my vaginal symptoms?"

Yes, all those areas are related.

I'd get unsweetened cranberry juice to drink (or capsules).

Wise Woman #1 suppository may help with the vaginal stuff (make sure it's the one with #1 on it, they made different kinds and this one is for bacteria). Use at night before bed and store in the fridge.

I get it from my ND. Here's a link so you can see what it looks like (I've never bought from this site).

http://www.momemineral.com/Suppositories-supp-Wise-Woman-Herbals/dp/B007NCBXT0

Also, using probiotics as a suppository at night may sooth the area. Even just acidophilus. Don't do it along with the Wise Woman stuff.

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Lymetoo
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No one with IC should be drinking cranberry juice.

--------------------
--Lymetutu--
Opinions, not medical advice!

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tricia386
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Its not ic I've seen 5 urologists and urogyncologists all say no ic doNt know what it is

--------------------
Lyme activated in April 2010 by gardasil vaccine.
DX: Lyme,Babs,Myco,Bart 11/10
Treatment Started: 3/28/11

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GretaM
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If you have battery acid urine, burning when you pee, frequent and unsatisfying urination, and white blood cells in your urine... Stay away from cranberry juice, orange juice and diet pop.

I'm surprised they say it isn't IC. What do they say it is?

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Lymetoo
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quote:
Originally posted by GretaM:

If you have battery acid urine, burning when you pee, frequent and unsatisfying urination, and white blood cells in your urine... Stay away from cranberry juice, orange juice and diet pop.

I'm surprised they say it isn't IC. What do they say it is?

-
No coffee or caffeine either.

--------------------
--Lymetutu--
Opinions, not medical advice!

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GretaM
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Tricia-was googling mycoplasma and came across this link for ureaplasma.

I've never heard of it before but it makes sense.

http://my.clevelandclinic.org/disorders/infections/hic_ureaplasma_and_mycoplasma.aspx

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glm1111
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Agree with Catgirl about the cause being from parasites. Got rid of my bladder issues when I went after parasites. This has been suggested to you many times on your other posts.

Parasites will harbor and protect the bacteria. Have you tries any antiparasitics at all?

Gael

--------------------
PARASITES/WORMS ARE NOW
RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS*

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tricia386
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Ivermectin that's it glm

--------------------
Lyme activated in April 2010 by gardasil vaccine.
DX: Lyme,Babs,Myco,Bart 11/10
Treatment Started: 3/28/11

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tick battler
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So, did you have any reaction to the ivermectin? Any herx? I agree....you need to at least try to address parasites. You have to change what you are doing and try something new.
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tricia386
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I am only on 12 mg one time a week per my LLMD

--------------------
Lyme activated in April 2010 by gardasil vaccine.
DX: Lyme,Babs,Myco,Bart 11/10
Treatment Started: 3/28/11

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glm1111
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Probably not enough. I was on several herbal antiparasitics for several mos and saw nothing exit until I added salt/c.

The combo was strong enough to cause a mass exodus of parasites including some exiting from my eurethra, You can purchase the salt/c plus book from Amazon for excellent guidance.

Combining that with Parastroy and or Humaworm starting at half the dose would be a good start. Take a look at the PARASITE WARRIORS THREAD.

Gael

--------------------
PARASITES/WORMS ARE NOW
RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS*

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tick battler
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That dose won't do much IMO. Gael is right...start the herbs and salt/C and do some enemas to get the stuff out! Or try the chlorine dioxide baby bottle protocol which is VERY effective.

You have to think outside the box at this point if you want to get well. You also cannot rely on your doc who clearly does not know how to get rid of parasites if he is giving ivermectin once/week.

tickbattler

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