Topic: HELP CANT HANDLE THIS ANYMORE! 14 months later still IC and vulva symptoms
tricia386
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Member # 29623
posted
UGH 14 months later! 1 llmd in NY and 1 LLNP in DC...several gyncologist and urogyncologist...Nothing even a cystoscope.
They say its not IC....nothing has helped really. My vulva is so read and inflamed dry and cracking... my bladder always feel like I need to go...I am at my witsend getting married in May...I cant do this anymore...I cant handle it...Dont know where to turn...I cant take it anymore I am in a bad bad bad place I am 27 I just want a normal life....I Cant cant live like this anymore...
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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map1131
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Have you even tried the berberine suggested? Please the recommended berberine is GlycoX Brand and it's available on Amazon. Hit the Amazon button below today and order it. What have you got to lose>
I believe my original infection invited lyme & co to the bacteria party in my urinary track. This abstract might be from Korea, but by now we know some of the best testing and research comes out of the good old USA.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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RZR
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So sorry.....I feel your pain...literally!
Try 3-1/2 years! I am in the same situation and cannot find any relief or help either. I do not think mine is IC. I think it's either a yeast or bacterial infection.
Right now, I started CD (MMS) douches two weeks ago. It is a one-month protocol. I had chunks of what appeared to be tissue come out the first few days. Now, I still have a bloody discharge right after the douche.
If this doesn't work for me, I am going to insist on my gyn taking a look deep inside with some sort of scope....hope there is such a procedure.
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
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tricia386
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Map1131- I tried it for a month that brand nothing! how much did you take?
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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GretaM
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Tricia I am so sorry you are going through this.
Have they cultured you for strep B?
Most of the time they ignore it unless someone is preggers.
But in my case it was pathogenic and they treated it.
Also, I was in the health food store and a lady was talking about sea buckthorn oil, and sea buckthorn soap. She was post menopausal and was talking about dryness and irritation.
But the seabuckthorn she said was very soothing.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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map1131
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I'm using tea tree oil for the flairs in the vagina. There is suppositories that have tea tree for yeast/fungal/bacterial infections in this area.
I have oils, why spend more money.
Until you get rid of the bug in your urinary the vulva is going to stay inflamed.
Believe me I know exactly how you're feeling. Traditional meds didn't help and I had to figure it out on my own. I'm so glad I did.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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map1131
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Thank you Greta for info on sea buckthorn oil and soap. I'm post and someone recommended Vit E and it set me on fire down there.
Haven't been brave enough to try it again to see if it's just my bodies way reacting to Vit E oil because I need it or it doesn't agree with me.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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tricia386
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I mean I have been on IM Rocphein IM Bicllin Tini Biaxin Mino Nystatin Diflucan rifiampin septra...Banderol Samento...I dont know whats missing!
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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tricia386
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Maybe I need IVS?
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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map1131
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posted
Abx very well could be adding to your issues. As the bacteria flow from the urine, of course it's going to invade the other area.
Abx is very hard on the female area in some people.
I started with 400mg once a day. Herxed like crazy from yeast/fungal attack for 3 weeks. Then things calmed down and I upped my dose to 400mg twice a day. I am using Swanson.
I'm going to switch to GlycoX after my Swanson berberine to compare products. I would like to up my dosage again. Glycox 250mg would be more to my liking but you never know.....Swanson brand could be the product for me.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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map1131
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You've got that garasil vaccine in you that makes me shake my head and wonder what it's done to the area it was suppose to protect. ggggggggggrrrrrr our gov.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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Catgirl
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posted
I had all of the same symptoms you have. Lyme and company were depleting my nutrients (multi vitamins didn't cut it). I am much better now. :)
Have you tested your hormones, vitamins, minerals and amino acids yet? I would do it to find out what you're low in, then supplement. I slowly did it the hard way, a vitamin here, a mineral there, hormones too. Then slowly my blood tests showed I was low. I think it's better to test and find out.
Also, parasites love the vulva area, as well as the bladder (I was shocked to discover this).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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mojo
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posted
I had this pain for seven years and it gradually decreased as I treated lyme& com. I always thought it was from Bart. But once I started my babs is when I saw the most dramatic improvement
For immediate relief:
If you like coffee change to cold brew High alkaline forming low acid forming diet No soap down there! Change shampoos and personal products to non toxic esp tampons and pads If you can wear panties white cotton ver loose. When at home wear a nightgown only
Posts: 1761 | From USA | Registered: May 2006
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glm1111
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Tricia,
You have to try ANTIPARASITICS!!!! Catgirl is right about parasites being the cause. In particular, pinworms come out of the rectum at night and lay eggs.
Sometimes they get lost and go back into the urethra instead of the rectum. I had parasites and eggs exiting when that area when I did parasite tx.
This has been suggested to you before. Cuts, and redness and bloody discharge are VERY indicative of this kind of infection. PLEASE give it a try and research parasite symptoms and tx.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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I'm SO SORRY you are in so much pain and misery. Keep searching for the answer. It is there somewhere.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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GretaM
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posted
I forgot to add... When I had that strep B, I started taking a probiotic specially for women
Renew Life VS Support. In a pink box with culture specific to natural biome ratios found in us.
Also Vitanica, Tori Hudson ND, has suppositories available with probiotics inside and caprylic acid.
Those helped me too.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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glm1111
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posted
Sent you pm
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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map1131
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tricia, I just did search on this site and came up with some really good posts going back to '08 and earlier.
First off, glm1111 and her parasite theory is good info.
Member cantgiveupyet search back to 2008 on topic of vagina.
Yeast Arrest product CandaClear product
Baths with tea tree oil.
Vulvar Pain board
Don't use Always feminine care product
You're not the only female that has struggled with this for a long time. Do a search on this site. Many of them over the years.
Some reference to Bartonella being the cause of pelvic floor disorders.
You've got lots of reading to do.
Don't give up yet.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
Just looking at your list-- the things maybe that haven't been tried:
Rx antiparasitics like albenza, mabendazole, biltricide, praziquintal
Rx antivirals like valcyte or valtrex
Rx antibiotic Cipro.
I'm thinking Cipro because Proteus Mirabelis sometimes lives in the bladder and Cipro can sometimes kill it.
Also-- maybe try Meriva-- bioavailable curcumin-- to lower the inflammation?
Just trying to think of something....
-------------------- Son, 26, Dx Lyme 4/10, Babs 8/10 Had serious arthritis, all gone. Currently on Valtrex Daughter, 26,bullseye 7/11 arthritis in knees, cured and off all meds. . Self:Lyme, bart, sxs gone, no longer treating. Posts: 496 | From Washington, DC | Registered: Jul 2010
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mojo
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posted
IMHO the most important things mentioned:
Never use "Always" products of any kind - they can be the cause of this pain and can really hurt you if you already have it.
Parasite cleanse
Good diet
Vulvar pain board (a yahoo health board)
Best of luck. This was/is my all time WORST symptom of Lyme & Co and had me bedridden in 06. You CAN get better.
(you should also look into Lichen Schlerosis - the little cuts are classic LS. They will discuss this on the Vulvar Pain board, too. LS is treatable)
Posts: 1761 | From USA | Registered: May 2006
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kidsgotlyme
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posted
I have IC. Probably have LD, but we are too deep into debt trying to get child well to worry about myself.
I take Elmiron, neurontin, and hydroxizine and these meds keep me sane. Without them, I am in pain all of the time.
Maybe you could try these meds just until you get the LD gone?
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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nefferdun
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What infections are you treating? Bartonella and Protomyxzoa cause urinary tract infections and irritation. If you are not taking the right drugs it won't hit it.
What are your OTHER symptoms? Did you test positive on bands 41 and 23 - that would indicate PR.
PR is a blood parasite. That is probably one reason people taking anti-parasitic drugs get relief from many of their long term symptoms. I have taken a lot of anti-parasitic drugs and herbs and NEVER saw a worm of any kind, but parasites don't have to be visible. PR is microscopic.
I am having a mild relapse and I have to get up to urinate every two hours all night. It is exhausting.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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oxygenbabe
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posted
Off all grains. Check into mast cell disorder. Progesterone cream on a qtip on the area. Marshmallow tea, slippery elm tea.
Posts: 2276 | From united states | Registered: Jun 2004
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I had this problem - couldn't sit or walk! It was horrible. It would only do this about 2-4 days a week. I was taking 4 ABXs at the time. Dr took me off all ABX for 2 mos. I am now back on Doxy.
But . . . I noticed, since I've stopped the Biaxin I no longer have this reaction. I think it was a herx.
Posts: 250 | From East Coast | Registered: Jan 2013
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tricia386
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Ugh so confusing!
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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tricia386
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Member # 29623
posted
I have an LLMD appt. tommrow I am going to suggest cipro. Although I did have some tendon issues before. Also talk more about parasites.
I also just found out I have NO good bacteria down there. However everytime I insert a probiotic vaginally it burns...
I already tried teh anti-viral route with this too..
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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posted
Tricia, I've heard from more than one person that it was yeast. I think NOW brand has a good candida cleanse.
Posts: 482 | From Oregon | Registered: Feb 2011
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GretaM
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Tricia-you can't insert a probiotic made for your stomach into your vagina.
I think it has special coatings on it to make it survive stomach acid.
There are special probiotic suppositories made especially for vaginas. They have the correct pH balance also.
I also had an old skool doc recommend whole milk high fat plain yogurt-at room temp.
I tried it-it didn't help me with the strep.
The probiotic vaginal suppositories worked the best.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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Amanda
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posted
have not been on here for a while.
Over last 2 years have struggled with bladder pain and feeling like I need to go badly all the time. It is maddening
A new drug has come out for bladder pain. It really does help, but only if I take it all teh time. And there are also times when even this doesn't help,
Its called Uribel. It turns your pee blue. IT is NOT an antibiotic, but it does have some antibacterial properties. Think of it as listerine for your bladder.
I know there are some people who will say natural is better, but when youre reallly hurting, I believe anything that can help you get through pain is worth it.
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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