Topic: Still struggaling with IC..please help suggestions needed.
tricia386
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Member # 29623
posted
So after 1.5 years of treatment IC Like symptoms have shown up. It has stumped my LLMD. He said that many patients come in with IC and they improve. However, he is stumped why I developed after 1.5 years.
I have a cystoscope on 10/22.
Current regmine. Pain has improve alittle but not alot still lots of urthera and bladder fullness. Also I have lots or irritation to the Vagina especially the opening.sorry if TMI
Can anyone suggest any herbs or anything else I can be doing?? I am so lost and everyone else seems to be too. UGH!
I was thinking mayeb Golden seal or oil of oregano..Maybe its yeast. I dont know ? All STDS have been ruled out as well as yeast.
Thanks again for your help as always.
-------------------- 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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And to relieve the bladder pain/fullness and urination:
Pyridium (Phenazopyridine) this helped quite a
bit... You can buy this OTC as Azo Standard
(Phenazopyridine), There may be other brands as
well, It�s a smooth muscle relaxer than can help
relieve the pain that accompanies a UTI. Note: this drug won�t
actually cure a UTI; it�s just to make things more comfortable.
**It's cheaper to get a larger quantity via a script.
My bladder issues would come and go... the only time I have problems now is when my yeast load
acts up...(frequent urination) but, thankfully, no actual bladder pain anymore.
Posts: 396 | From EAPennsylvania | Registered: Dec 2007
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glm1111
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posted
Check into the possibility that you may have parasites. Google parasite symptoms and check the symptom list at Humaworm.
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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posted
D-Mannose...get some today and start taking it!!!!
-------------------- unsure445 Posts: 824 | From northeast | Registered: Jun 2008
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tricia386
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posted
unsure I have the powder how much a day should I 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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posted
My sister (who does not have Lyme or any co-infections) just discovered by accident that supplementing with zinc is helping her IC symptoms.
She thought she was coming down with a cold, started taking zinc to ward it off and realized that her bladder pain is better. Not sure how much she is taking.
Posts: 227 | From Northeast | Registered: Mar 2010
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glm1111
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posted
tricia,
You should seriously try some antiparasitic herbs like Parastroy, Hanna kroeger Wormwood Combo or Humaworm.
Google parasite symptoms.
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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tricia386
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posted
I tried D-Mannose I think it helped I took alot. The powder form. I think it might have given me Diaherea or maybe it was the magnesium citrate?
Anyways I also have vaginal issues when this all started red and swelling, burning and itching and pain with intercourse. I am soo lost. I have been applying topical coconut oil. I am thinking about adding maybe a lil oil or oregano. I got this idea bc I just had a cold sore and used it for that, and it helped.
They both started at the same time my 4 week flare in August. Before that I was seeing the light at the end of the tunnel.
-------------------- 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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beths
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Member # 18864
posted
Could be BV-doesn't usually show up in cultures.
Get some pH paper-if your pH is over 4.5-it's probably not yeast, but BV.
You can actually buy those test kits in a drug store. There is an over the counter kit to treat it that works well.
You first need to find out if it's yeast or BV
Posts: 1276 | From maryland | Registered: Jan 2009
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tricia386
Frequent Contributor (1K+ posts)
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posted
What are some natural remedies for BV. Everything just hit all at once!
-------------------- 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
Just my two cents...... I had extreme cystitis. It was diagnosed as both IC and plain cystitis.
All I know that any give day I could be in such pain I could not function.
The first thing I did was go on a meat and veggie diet.
I cut out all spicy and citrus. I ate only healthy food.
I did not anything white like flour, potatoes, sugar, junk food like pop, donuts, candy, etc.
I also started drinking as much distilled water as I could.
I gradually started adding lemon juice after about a year.
I did enemas and that really seemed to help.
My big break through started when I was treated for yeast, fungus, hormones, and parasites.
Gael is right (I have to thank you personally for helping me).
You need to do a parasite cleanse.
After I went on parasite med for about 2 months my bladder stopped buzzing and throbbing.
I think I had bladder flukes.
I still am on parasite meds and seeing what I think are part and pieces of parasites.
Gross, I know but better than living with me!!!!!!
My bladder is now about 90-95% well. I still don't eat a lot of spicy or citrus foods.
No coffee, tea, chocolate either. Not a fun diet, but a get-me-well diet.
Might give this a try. I thought I was hopeless.
One more thought. A practitioner told me that ABXs tear down a body.
Herbs and natural supplements build up a body. Just food for thought.
Good luck, you can get better, I did and thought I was doomed.
Posts: 620 | From Ks | Registered: Oct 2011
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tricia386
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posted
What are some good parasite clenses. I will address this with my LLMD next apt.
-------------------- 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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tickled1
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posted
I had IC that got better with Lyme treatment. It flares occasionally and I suspect it is yeast when it does.
Posts: 2541 | From Northeast | Registered: Jan 2008
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glm1111
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posted
Thanks cozynanna for the support. So happy to hear that it's working for you. Sometimes I think my posts fall on deaf ears.
tricia,
I listed some cleanses in above posts. FYI, most docs(even the best LLMDs) don't know much about parasites/worms as a co-infection of Lyme and don't think it's important.
If I hadn't treated parasites when I did, I am pretty sure I wouldn't be here.
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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tricia386
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Member # 29623
posted
Thanks GLM-
I will definately be looking into this. I am so desperate to find anything to help. Sometimes I feel like I fall on Deaf ears to my LLMD
-------------------- 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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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Were you able to get Berberine (GlycoX)?
That cured IC for me. From your previous thread, detail:
tricia386
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Member # 29623
posted
No Keebs I didnt yet. I have to discuss with LLMD first to make sure its okay.
All I know is that last week I had a cold and all these symptoms went away. They appeared over night in August and my life has never been the same. I feel so very alone.
I just got engaged and I am so sad I cant enjoy any of it.
-------------------- 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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D-Mannose with no cranberry. IC patients cannot tolerate acidic products. I tried the powder and it was too much. My stomach rebelled. I take one capsule twice daily.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Beths, what is BV? I can't ever get an infection to show, but something was going on.
Posts: 620 | From Ks | Registered: Oct 2011
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tricia386
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posted
All I know is when I gotta cold all my ic symptoms went away
-------------------- 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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quote:Originally posted by tricia386: All I know is when I gotta cold all my ic symptoms went away
- That's weird!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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beths
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Member # 18864
posted
BV is bacterial vaginitis. It's basically looks/ feels like yeast but its an overgrowth of the normal bacteria so it doesn't show up. Another cause is antibiotics which kill the lactic acid producing bacteria which keep the pH of the vagina low. Killing yeast won't help
BV is actually MORE common than yeast. Some say it has a "fishy" smell but that's not always true
Natural tx is boric acid suppository but that can be too harsh. Drug stores carry a homeopathic kit which has borax, a milder form of the acid. Try it- worked like a charm for me! Also try to find probiotics that are specifically for women (fem- dophilis) and really double up on them.
Good luck- congrats on your engagement!
Posts: 1276 | From maryland | Registered: Jan 2009
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tricia386
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posted
Thinking i am going to live with this forever now. No one can seem to fix it...I am not on ceftin mino and rifiampin and plaquenil..adding amox and doing anti p treatment.
-------------------- 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
I had these problems too, but then discovered that I was histamine intolerant. Every time I ate foods high in histamine my symptoms flared up. Over a period of a few years it got to a point where not "just" the bladder and vagina where inflamed, but my entire skin was itching. Finally I read an article on histamine intolerance, and it all became clear. Shortly after a smart doctor also diagnosed Mastocytosis, a condition where one has too many mastcells that are constantly releasing histamine. Add that to the already present histamine intolerance... I too thought I was going crazy. I think both, the HI and the Mastocytosis, were caused by long-term abx (not that I had a choice). My gut suddenly did not produce enough DAO, the enzyme that is needed for histamine metabolism. The mastocytosis was directly linked to the use of Lariam. HI is very difficult to figure out. Take a look at what you eat, and look what the food has in common. Even healthy eating won`t help; if the organic chicken for instance has been on the shelf for more than a few days it will be high in histamine. Go very bland for a while, like unsweetened oatmeal with water, even if that interferes with your yeast-prevention-diet, then slowly add foods back. Try to find the triggers. My worst are soy, anything with wheat bran, and cooked tomatoes, all of which are naturally high in histamine. Where it becomes difficult is that I constantly have to assess the freshness of everything I eat. A food may start out low in histamine, but as the food ages the levels go up. Only freezing stops the process. For me ordinary frozen broccoli from Sam`s works better than the fresh, organic one that has been on the road from California for a week. If you want to know more please send me a PM. I think your diarrhea may have been caused by the Mg citrate, not the d-mannose. Also, I read the omega 7 (Seabuckthorn oil)works well for the musous membranes. I have been using it for years.
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Carol in PA
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posted
Keebler mentioned that Berberine (GlycoX) cured her interstitial cystitis.
posted
tricia, I had ic type symptoms when I tried paranix for parasites.I stopped the meds, and went on dgl plus, from pure encapsulations which took care of thsoe symptoms.
I'm also on no meds/treatment(don't tolerate anything)so not sure if that is what is causing your symptoms.Sorry, you're going thru this...
Posts: 857 | From northern california | Registered: Dec 2009
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tricia386
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posted
I tried the glycol for 2 mo ths and nothing!! Ugh I'm so lost and confused
-------------------- 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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RZR
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Tricia,
I could have written your exact post. I too have been struggling with IC type issues and lost as what to do.
I keep reading about D-mannose and also glycosamine chondroitin. Have you tried either of these?
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
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tricia386
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posted
Yup have tried both dmannose for 3 months did nothing and I just started cystoprotek about 3 weeks ago so to soon to tell
-------------------- 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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Razzle
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posted
My Sister has IC and she says the only thing that stops the pain for her is NingXia Red (wolfberry juice).
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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tricia386
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Thanks Everyone-
My mind just keeps going around in circles...I mean I was making leaps and bounds in treatment and than BOOM...went down hard in AUG
-------------------- 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
No way could I tolerate GSE!! Are you still taking it??
Stay away from anything acidic.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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map1131
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posted
This post by Gigi really got my attention when I too was struggling with uti again. Abx just put me into a full body rash. Others supps were not helping me, so I ordered some DE and it cleaned out my kidneys, bladder etc.
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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