I am new to this forum and I was wondering if anyone has a similar problem. I have a very strong burning sensation in my vulva - so bad I even had to take time off my work! All known gynecological causes were already ruled out.
My Fry labs test came positive for a massive Bartonella infection and I'm just trying to figure out if there is a link. If you have vulvar/vaginal burning or some other type of pelvic pain and were diagnosed with Bartonella, Lyme or any other co-infection. Or of you simply know that such thing is possible, could you post your story, or just send me a message?
Thanks!!
Posts: 59 | From Boston | Registered: May 2008
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I have had that, though apparently not as bad as you, and mine only happened during intimate times with my husband. It has since gone away with treatment. For years I thought it was normal.
I am diagnosed with Lyme, babs, and bart.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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disturbedme
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posted
I have thise once in a while.
It could be due to yeast.
Or it could also be due to interstitial cystitis.
Do you have other symptoms such as frequency to urinate, when you have to go you aren't able to or a small amount comes out, pain around pelvic region, etc.?
I know lyme can cause interstitial cystitis, and I believe it has for me. I've never had a diagnosis of interstitial cystitis but I have the symptoms or symptoms suspicious of it.
I have been diagnosed with Lyme/Bartonella. But am pretty positive I have Babs also as I have almost all the symptoms of it.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
I have inguinal and mons pubis pain. All external pain. It is usually more of a stinging or stretching sensation instead of burning.
I couldn't sit down for several months. Stood at work, at restaurants, etc...
I have Lyme and Babs, suspect Bart.
Pelvic pain is more common than most people realize. It's embarrassing to admit, so it goes unrecognized sometimes. I almost didn't post because of it. I suspect there are others.
Posts: 129 | From Virginia | Registered: Feb 2008
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posted
I have Interstitial Cystitis (IC) but it was caught quickly so it didn't spread past my urethra.
Right now I'm on bicillin just to keep Strep D out of the picture.
The IC pain for me is clearly distinguishable - it's sharp burning pain, sometimes with pressure, in urethra - always with frequency.
This, however, is something different. Had about a dozen yeast cultures by now and tried all sorts of treatments to be convinced that this is not the case.
Here are my symptoms in a bit more detail: The burning is deep inside the vulvar area and usually doesn't have any focal point.
6 months ago, when it started, it would be better in the morning and get much worse towards the evening.
Now it's more or less the same throughout the day. What's funny is that when I go to sleep (not just lie down) it doesn't bother me!
I have never yet had problems falling asleep with it, unlike when I had IC pain!
Funny thing - couple of weeks into my Bart treatment I had almost a week of a break. It was still there but muuuuuch less!
Then it came back but differently. I didn't have that "burning in the thickness of the tissue" feeling, but more on surface and actually focused in one spot.
It would come and go like this couple of times but since week and a half ago it was slowly and steadily coming back the "old way".
Now I am in excrutiating pain again, don't know if all of this was an accident and if I am ever goin to have another break.
Surely I have plenty of fatigue (don't know how much of it is actually from pain), chills, tension in muscles, fever, heaviness in legs sometimes, tingling in my shoulders but would gladly endure all of these for the rest of my life if only I wouldn't have this horrendous burning!
[ 14. May 2008, 05:46 PM: Message edited by: Sing02 ]
Posts: 59 | From Boston | Registered: May 2008
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posted
What a horrible sensation. It must be driving you mad.
The only similarity I have had is the less pain in the morning, more pain as the day goes on. For a long time, sleep always gave me a "free pass" in terms of no matter how much pain I was in the night before, I was pain free in the morning.
After awhile that changed to the point that the pain was constant. The quality of my pain has changed over time, too.
I have little pain now, but I have had flare ups at times. This is the first time, however, that I have had as little pain (in general) as I have ever had. I have become hopeful, rather than hopeless.
I hope the same happens for you.
Posts: 129 | From Virginia | Registered: Feb 2008
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mojo
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posted
This is my absolute worst Lyme symptom and one that I've had for three years. Three years ago this month it came and for many months I was in the fetal position by 7:00 pm in bed. It would take hours for the pain to subside. I had only one position that I could sleep in.
For the most part I can only wear skirts and dresses. Somedays I can wear very loose sweat pants or stretch pants a size too big for a few hours.
I now know quite a few women who have this. Once I had my Lyme Diagnosos (Feb 2006) I asked all the gals on my Vulvar Pain board that had "Fibromyalgia" to please get a good quality Lyme test. Viola! Many of them had Lyme.
I was able to drastically reduce my pain with a more alkaline diet. The day I went to low acid coffee my pain went from a 10 to a 4 or so.
Drinking a lot of water, staying "regular" and eating alkaline is the way I treat this.
I pray that someday when my Lyme is healed that this symptom will go away. It would be fun to wear jeans again. I know I've had Lyme for many many years, but just got this sypmtom in 2005.
I hope this helps. When I was diagnosed with Vulvar Vestibulitis (now called Vulvodynia or Vestibuladynia) and told it was a life sentence I was truly devastated. I had never heard of this condition and felt so alone. My Lyme Diagnosis was actually a blessing once I found that this was a pretty common symptom - I have hope!
I hope you can heal what I consider a "symptom" when you heal your Lyme and Bartonella.
How do you get "low acid" coffee? I've never heard of that. Do you have websites you would recommend for looking at the alkalinity of foods?
Posts: 129 | From Virginia | Registered: Feb 2008
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Cut and paste the link. It makes really good low acid coffee. My stomach is a mess from the meds-now I don't have to give up my beloved morning cup of coffee.
I had vulvodynia a few years ago-way before I was bit..but one doctor though because I had gotten sick so fast, it was my second bite.
It flared up again, but now with tx, has subsided...it's not a life sentence.
Posts: 561 | From eastcoast | Registered: Aug 2006
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mojo
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posted
Thanks to everyone who said their pain got better!
The low acid coffee I started with was something I ordered online called Hevla. It was OK but not the best.
I now use the Coffee toddy mentioned by Shoney and it makes the BEST coffee. I buy organic beans (half decaf) on line on Ebay. It makes a concentrate and you just add boiling water to taste.
It's also very good but they don't carry Organic. At first it seems more expensive but there is no waste. And I only allow myself one cup per day as caffiene is not good for us, either. (it's my one vice)
There are a few website that list alkaline forming vs. acid forming foods (goodle Alkaline diet) but beware because there are many contradictions on the lists. I just do the best I can.
For the most part veggies, fruits, most nuts are alkaline forming and meats, grains are acid forming. The worst acid forming foods are alcohol, coffee, sugar, sugar substitutes(except Stevia which is alkaline forming) and all processed food. Organic food tents to be more alkaline.
Prescription and OTC meds are acidic, herbs and most supplements are alkaline forming (especially minerals like calcium, magnesium and potassium)
I juice vegetables (cubumber, bok choy, carrots, beets, swiss chard, celery) and have a fruit smoothie everday (organic plain yogurt and fruit mixed in a blender). This helps a lot.
I hope this helps.
Posts: 1761 | From USA | Registered: May 2006
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sparkle7
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Yes. I have this symptom, too. It was one of the first symptoms I got when I was originally diagnosed with Fibromyalgia.
I went to a gyn & she knew nothing about it. I had to do alot of research on the internet & found vulvodynia - which sounded like what I had.
I don't know if there is a treatment. When I found out that I had Lyme, I thought that maybe the spirochetes are taking up residence in the vulvular area. I am hoping it will subside with treatment of the Lyme.
When I was taking antibiotics it went away for a short time but it has come back. I don't know what to really do to address it. It's really not pleasant & I can empathize.
It makes it hard to enjoy any intimacy which has definite psychological implications & is very hard on relationships. It's really one of the worst things about Lyme that I've had to deal with.
I know it's kind of hard to talk about but I'm glad you brought it up.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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cantgiveupyet
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posted
You can read all my past posts and how much terrible pain i was in. Just look up my member number.
What i can tell you is that some LLMD are finding Bartonella is the cause.
You also have to look into the pelvic floor muscles refering pain to the vulva, which happens a lot. Its actually the muscles and the vulva.
I goto a pelvic pain clinic that helped me with symptoms.
Pelvic floor physical therapy helped me a lot, but I still have tons of trigger points in the pelvic floor muscles.
I am one of the severe IC, VVS, PFD patients where I go. Im having trigger point injections now.
If you PM me I would be happy to talk further about all of this.
Hang in there, its the worst symptom IMHO of lyme etc.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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cantgiveupyet
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posted
oh, and Im one of the ones not afraid to talk openly about this, so chat away.
This is one symptom that I would suggest getting some kind of symptom relief for. Such as neurontin, or some topical creams, physical therapy for the pelvic floor.
Im trying to think if I know of anyone near Boston that treats this, so you can get some relief.
Im completely disabled because of this and IC, my PFD is the worst though, muscles never stay relaxed.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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bettyg
Unregistered
posted
WELCOME; so glad you found us.
molly, thx for typing in the other name i was trying to think of besides IC.
sing, i sent you a private message offering to send you locally here my newbie package; there are links there of good experience/sites members have posted. it's described there.
pms can be found in my profile or on left under hello! best wishes for getting this pain/problem under control soon!
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Keebler
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posted
-
On top of all the other stuff we have to deal with, this is one of the worst experiences.
I had this problem for almost 4 years. One thing suggested by a ND was a gel to apply to the genital area. It really helped. It was the only thing that got me through.
Califlora Calendula Gel. by Boericke & Tafel. It's a homeopathic. GEL, not a cream.
I also had to use only toilet tissue that was not bleached.
--- My mouth also burned just as much and it was suggested that I had "burning mouth" as a menopause symptom. Coconut oil helped ease some of the pain of my mouth but only as long as it lasted to coat the tissue, then it burned again.
After dealing will all this for nearly 4 years, a few months ago I had a kidney stone attack (or something like it - a first). My MD thought I might have an infection.
I went on 10 days of cipro and the burning pain of mouth and lower regions went away just about the 10 day mark. I've been free of the pain now for 7 weeks. Bladder trouble also far better.
mojo
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posted
There are "treatments" but they mainly treat the symptoms. I saw the leading Vulvar Pain specialist in the U.S. (she wrote the treatment protocol) and they don't even try to address the cause. She does a lot of surgergies, uses medications (like gabapentin, tricyclics, etc). None of this helped me.
PT is probably a very good idea but I have not done that. I have heard many success stories, though. My chriopractor has helped me with this, though. He totally cured another patient of his that has VP.(no Lyme, though)
Keebler- what was the gel? Sounds interesting. I use Emu Oil and that helps somewhat.
I used to be closed mouth about this but now I'm very open - I want other women who have this not to feel so alone like I did. It's devasting at first for sure.
Keebler brought up some very important information.
Changing your personal products can be very helpful. I use only non-toxic personal products from head to toe. White cotton undies only - use non toxic detergents, no fabric softener and absolutely no fabric softener sheets. And believe it or not no soap "down there".
There is a Vulvar Pain Foundation and another organization that I can't think of. They mostly talk about diet (low oxalate, which didn't work for me) and sypmtoms. The key is finding the cause and I think with us it's the Lyme.
Interesting about the Bart - I don't have other symptoms of any other co-infections and often wondered if I had any. Now on Cowden and treating all co-infections which is comforting.
Thanks so much everyone for this information.
I look forward to healing this pain with my Lyme treatment.
Posts: 1761 | From USA | Registered: May 2006
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cantgiveupyet
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posted
Also, if you still get a period do NOT use always products. I was told this on my first visit at the Pelvic center. They changed their material a few years ago and now it actually helps to breed infections and just has nasty chemicals.
I use seventh generation pads only.
One woman came in with burn marks all over her legs etc from the Always pads.
Wash undies separately too, in a detergent like dreft, or arm and hamour dye free(i use this)...I double wash all undies, first with the soap and then rinse it with plain water, and hang to dry, no dryer.
My family uses dryer sheets, so I dont put the under garments in the dryer.
Suprisingly what has helped me the most is applying compounded capsaisin to the glands. This helps with the whole substance P and calming the nerves. It allows me to have more of a life until my cause is treated.
I also use compounded lidocaine in acid mantle base. Acid mantle is so soothing, the bases in the prescription lidocaine that you would get at cvs is irritating.
Hang in there.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
I've had interstitial cystitis caused by both lyme and candida. Treating both conditions vigorously made it better. You may have one or both in the local tissues without a discernable vaginal infection.
You might find some useful information on a websearch on this topic. I know someone who benefitted from physical therapy for this condition, but was misdiagnosed as candida for many years.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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mojo
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posted
Cantgiveupyet: OMG forgot about the Always. I tell everyone I know how bad that product is. I think it can actually cause this condition.
I use natracare tampons-can't even think about pads as anything up against my body drives me nuts.
Thanks for the tips on the topical treatments. I see my OB/GYN soon and I'll see if I can get them.
Posts: 1761 | From USA | Registered: May 2006
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Oh my God! I can't believe how many people came forward in such a short ammount of time! Thank you all sooo much! I will try to address everyone here.
Hokie - thank you so much for posting. It does seem like we have some symptoms in common. Would you mind telling how long you had this pain and when it started receding?
Mojo - oh, I hear you! When the pain is bad and coincides with fatigue I have hard times making myself move around the house.
And thus speaks the girl who used to run 1.5 hours every day rain or shine!
Because of my stomach my diet is pretty reduced already. I eat oatmeal, no-sugar organic cereal, cooked fish, vegetable salad, brown rice or sweet potato, rye bread, some fruits and drink lots of water.
I know I should quit caffeine for good but so far could only reduce it I'll check out your low acid coffee - that would be fantastic!
Shoney - I am new here and not yet sure about some abbreviations. Could you let me know what tx stands for?
Cantgiveupyet - I will definitely track your posts and PM you in detail. Especially curious about the connection to Bartonella because that's the only thing I was diagnosed as of yet.
My Bart is bad though - on the Fry photo I counted up to 20! little dots inside each of 4 RBCs among those visible... Still kinda hoping I might not have lyme.
You know, I actually went to Dr. G (are we allowed to post names?) in NY who adviced me to use a trainer unit to develop pelvic floor muscles.
Funny thing - after first use it helped a LOT but it gave me a UTI right away so I don't think I can do it yet.
Wasn't supposed to help so fast anyway so I don't even know what was that about.
Bettyg - Thanks I'll PM you!
Keebler - Glad to hear that your pain is gone! It seems that it was definitely linked to your use of antibiotics and this gives me enormous hope!
The only thing worse than terrible pain is terrible pain with unknown cause and duration
I'll check out the gel too. The only thing that somewhat soothes it (not always though) is olive oil. It also smoothes rubbing down there so I can run (I'm addicted
Mojo - I wonder if we saw the same "specialist". Dr. S by chance? I had a terrible experience with her.
I had a feeling that because she read in my file that I have General Anxiety Disorder, she thought I am exxagerating everything and didn't really take the ammount of my pain seriousely...
She put me on steroids which did absolutely nothing (couldn't use synthetic ones - had hydrocortisone compounded on neutral base).
Also - what is Cowden. I don't think I saw this name before.
Cantgiveupyet - was that Bartholin glands you applied capsaisin to? Thanks for a hint about compounded lydocain!
Bejoy - actually I came across this red candidiasis thing (atrophic yeast protected inside the vaginal cells) and tried to treat it with cortisone and Diflucan (took 100mg/day) for more than month. No results.
Besides I wouldn't believe that so much pain could be caused by residual inflamation unless one has candida allergy which I don't think I do since I had candidiasis before and wouldn't even realize it!
Posts: 59 | From Boston | Registered: May 2008
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mojo
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posted
sing - My Dr. was Dr. H at U of M. She also had me on a topical steroid - I forgot about that.
I hate it when Dr's think we are nuts because we have anxiety. It runs in my family - not my fault LOL.
The Cowden Protocol is one of the herbal Lyme and co-infection treatments.
Take care!
Posts: 1761 | From USA | Registered: May 2006
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oxygenbabe
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posted
Try applying a very tiny amount of progesterone cream to the area, but be aware of course you're applying a hormone so could have some systemic effects. However it is anti inflammatory and relaxes muscles. See if it improves your symptoms.
I think these issues are generally infection related and probably more than one infection. Lyme could start it off. However once nerves get inflamed or get caught in a feedback loop of pain, it can take some time to calm them down.
Applying olive oil--I wonder? Could that as a food oil lead to infections? Well maybe be sure to really take a good shower and use warm soapy water after.
Posts: 2276 | From united states | Registered: Jun 2004
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posted
Molly and Shoney, thanks for the information about low acid coffee.
Cantgiveupyet, I will PM you because I'm interested in knowing which LLMDs suspect Bart as a contributor. I've suspected Bart for myself, but tested negative. I'd appreciate any additional information you have about the potential relationship between Bart and pelvic pain.
Sing02, I've had this pain since being pregnant with my son. IT WENT AWAY after he was born and several months later I actually ran in a 10-mile race (sounds like we have another thing in common).
In June 2005, I became infected with Lyme and all my old pregnancy symptoms came back with a vengeance. In the inguinal region, it feels like a rubber band is cutting into my skin.
It got better with P.T. (weekly for months from a pelvic pain specialist) but she was a bit confounded by my symptoms since I never have internal pain and no trigger points.
It has continued to get better, albeit slowly, since I began antibiotic treatment a few months ago. I can walk for exercise again.
Any of you with trigger points tried the Stanford Protocol? Good luck to you all. This symptom is infuriating.
Posts: 129 | From Virginia | Registered: Feb 2008
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sparkle7
Frequent Contributor (5K+ posts)
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posted
Thanks for the info about Always products, cantgiveupyet! I "always" suspected some pads of being irritating.
I actually find that I am irritated from the menstrual blood, itself. I thought it may be some weird pH thing but I don't know. Maybe it was the pad & not the blood?
I'm going to check into the calendula gel.
I've read that the spirochetes like to colonize areas where there is collagen. I think there is collagen present in the vaginal area.
Hence, an increase in pain. I we get rid of the spirochetes & the endotoxins they produce - it may help get over the pain.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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cantgiveupyet
Frequent Contributor (1K+ posts)
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posted
sparkle there was a time the blood irritated me too, now it is the ovulation discharge that is so irritating it feels like acid internal and external.
Interesting about the callagen.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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posted
I actually have some estrogen cream prescribed by gyno - still hesitant about trying it.
Olive oil was actually suggested by a doctor as a naturaly soothing substance...
Recently I started wondering about how much of this pain is tissue inflamation and how much is a nerve pain...
Funny thing is that in rare days when it does calm down a bit - it drops very suddenly, within minutes...
Since I also have this tingling/crawling sensation all over my shoulders, I'm sure my Bart got into the nerve tissue.
It's exciting to hear that there are some doctors who also suspect Bartonella in connection with pelvic pain.
I was doing Azithromycin 500 every other day and Mycobutin 300/day for two months already and it seems that the biggest herxes and breaks, both in v-pain and fatigue happened during the first month.
Then it was slowing down - my first pain break was about 10 days into it and lasted for almost a week , later breaks were much shorter and further apart, herxes were happening not as often and were not as severe.
So now I am pretty much back to where I was before the treatment! - the same burning - strong and steady, without any focal points; same fatigue, muscle twitches, feverishness - bad but not severe, same old tingling and pulling in the shoulders.
I don't know what's going on but it seems that v-pain seemed to go in sync with Bart symptoms.
In search for an LLMD now... I think I really need someone to make sence of all this, adjust the treatment so I at least start herxing again, and tell me if they think I have lyme or not!
Got an appointment with Dr.Ph in CT. But it's only in a month... Does anyone know a good LLMD in or around Mass?
Posts: 59 | From Boston | Registered: May 2008
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posted
Cantgiveupyet - yes, blood irritates me a little.
Though this month my ovulation discharge drove me crazy! For some reason I also had TONS of it - ran to check if I got yeast infection, wonder if it was treament related.
What I wanted to say though is for those of us with IC. I know it might be controversial but I don't care because it worked for me and I am sure will work for at least some of you.
After my urine cultures stopped coming back positive, back in Oct, I send one to United Labs in VA.
They do an extended culture in soy broth (I think) which basically captures any bacteria you might have in your urethra/bladder.
Sure enough I had Strep.D and sure enough treating it cleared my symptoms! My doc thinks that my Bart is what keeps my immune system from taking care of that little bugger in my urethra so I have to be on bicillin just to keep it out of picture until I treat Bart.
But at least that's one huge pain less, and that should be worth something, right! PM me if you want their coordinates or have other questions.
Posts: 59 | From Boston | Registered: May 2008
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cantgiveupyet
Frequent Contributor (1K+ posts)
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posted
PM Metallicblue, he is in mass/ct area and will be able to help you located a good LLMD.
I sent two broth cultures to UML, both times found strep D, AND i even had quest do what they call a "special culture" it found enterococcus, and coagulase negative staph in the urine.
I think my immune like yours doesnt keep these bugs in check.
THree LLMD i saw dismissed the strep and enteroccocus(which is a form of the strep, maybe even same thing united found)
My ovulation bothers me while on treatment and off of it.
I would like to try IM bicillin but im so frail and thin yet again, and it cost a lot. Im on medicare.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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mojo
Frequent Contributor (1K+ posts)
Member # 9309
posted
blood seems to be very irritating for me. That's another reason pads are out - even on very light days. I wish Natracare would make a smaller tampon (I even wrote and asked them) as I end up using unscented Tampax during that time and I'd rather use Organic (no bleach or chemicals)
I haven't been diagnosed with Bart - or any co-infections. This is very interesting and something I will talk to my Dr. about.
Thanks everyone for the great info.
Posts: 1761 | From USA | Registered: May 2006
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mojo
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posted
bumping for someone new to the board.
Posts: 1761 | From USA | Registered: May 2006
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1-I have pain in the many regions, including right below my abdoment but above the vulvar region, but only when pressed on - however lightly. That is the case in many parts of my body. Is that the same kind of pain you all are feeling?
2- Does urine ph indicate anything that you know of? I thought to ask with all the mentions of acid v. alkaline.
Posts: 13 | From PA | Registered: May 2008
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posted
My 3 year old dd had this. We thought it was yeast and had her on the major candida diet. It wouldn't go away.
We finally found our way to a pediatric lyme dr (J) and he told us that lyme colonizes the urethra and vaginal burning is a common symptom. She had vaginal burning and burning on urination. Dr. J recommended luke warm baths with no soap and swishing water into the vulva. This did help tremendously.
She has been in tx for 18 months and this symptom is GONE.
Posts: 524 | From Hudson Valley, NY | Registered: Jul 2007
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Thanks for the info catskill. This confirms my suspicions.
Vulvar burning was one of my first symptoms. This is important news for people who suffer from this pain.
It's not some kind of "non-specific" pain.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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tickbattler
Unregistered
posted
Hi all,
I'm bringing up this old post because I would love to hear if any of you are doing better from treatment, and if so, what treatment worked for you.
I am yet another sufferer of this terrible pain. I cannot believe how many of us on lymenet have this symptom!!! It must be connected to lyme and/or coinfections.
I have had this symptom for over 20 years and it has gradually decreased to the point that now I often don't notice it. It has never completely gone away however.
When it first started, I could not sleep at night and could not wear pants. The burning pain was constant, even with no contact. A couple of months after this pain started, I had severe muscle pains in my legs for about 4 months. I also had low grade fevers and fatigue.
It was all attributed to an unknown virus. Over the years I had various additional ailments (bladder pain, stomach pain, IBS, sore throats), but the worst was always the vulvodynia.
I remember trying diflucan for a month several years ago and it seemed to help my pain a bit. Had anyone experienced this?
Well, since my entire family now has chronic lyme, I tested myself and got a positive from Igenex and a positive smear from FRY showing hemobart or mycoplasma.
I suspect that I have had lyme since I first got the vulvodynia over 20 years ago. (Unlike the rest of the family, I am actually pretty much symptom free aside from the vulvodynia, mild IBS, and some occasional head pains.) I did have some bart-like pain after my first pregnancy (sore feet in morning and sore throats).
I recently have seen a LLMD and she has started me on the Cowden protocol with Enula and Cumanda and detox herbs. I am now having the vulvodynia symptoms coming back and am horrified. I awaken at night and can feel the pain again. My IBS is also worse.
I am wondering if I should consider taking cipro or rifampin like those of you who have seen success. I feel like the herbs might be stirring things up but may not be enough to kick it, if indeed the pain is caused by lyme or bart.
What are your thoughts? Sorry for the long post! I appreciate any info.
-------------------- 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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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
The Cowden herbs are pretty strong. I had a worse herx from Cumanda & Quina than I ever had from abx... If a herx is any indication that it's working.
The good thing about the Cowden herbs is that you can take more or less as needed. With abx, I always worried about modifying the dosage due to resistance.
I've been adding & decreasing Lauricidin, a product called Yeast Cleanse & mangosteen powder. I've been herxing quite a bit from all of it. I think it's a good sign that it's working.
I guess it will get to a point when it will diminish. I haven't gotten there yet...
There are some other things I'd like to try but I have to wait a bit until I get some more money.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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tickbattler
Unregistered
posted
glm - do you have this vulvar burning as well? If so, has it improved since being on the salt/C therapy? Thanks, tickbattler
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, later breaks were much shorter and further apart, herxes were happening not as often and were not as severe. 
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