Welcome to this great site; I don't know how much do you know about Lyme but do a search under links for newbies. It will give a lot of info that can literally save your LIFE -it did it for me about a year ago-.

I also don't know if you have Lyme or not; however I can tell you that 3 months of abx IS NOT GOING TO DO THE TRICK TO CURE LYME.
We all wish 3 months of abx will take care of Lyme but unfortunately it doesn't; as a matter of fact most of us feel even worse during the first 6 months of treatment.

Pelvic pain was a big problem for me but after a year on treatment is gone; I was also diagnosed with everything else under the sun and moon.

Please read those links, educate yourself, look for an LLMD AND ADVOCATE FOR YOUR OWN HEALTH; IF YOU DON'T DO IT NOBODY WILL.

Good luck, I am sure treepatrol will come to this post any time to give you the link for all the newbies info.

Lymster in WA
 

I also have had this pelvic pain and it felt like my pelvis was cracking and breaking every step I took. I have been on antibiotics since Dec. and have noticed that this particular pain has lessened. I am on pain medications for this and other painful symptoms. Do a search (not sure it is working though) and see that you are not alone.

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best regards and blessings,
paisley
 

Welcome to this 24/7 educational & support group board!

Here's TREEPATROL's and TINCUP'S combination newbie links.
http://flash.lymenet.org/ubb/Forum1/HTML/029917.html

Print off the links then check them off as you read as you could spend several months reading all of this. Treepatrol constantly adds new links as they become available from the members here.

print & read Dr. Barrascono's info first; you will come back to this often.

Also, see Cheryl's extensive web sites on: LD DIAGNOSIS, SYMPTOMS, & TREATMENT ... wonderful!
http://www.lymeinfo.net/lymediseasetreatment.html

Some guidelines from Betty/others on using this message board:

* Do NOT use all caps when posting; it's hard on our eyes. But I know one of our members has macular degeneration, and all caps is what she can see & read so exceptions like this are acceptable for good reasons.

* We chronic, late-stage lymies can NOT read long paragraphs. So please limit your paragraphs to 6-8 lines max of text and double space between paragraphs.

* You can EDIT your text comments anytime. You can NOT edit your subject line so please make it as specific as possible instead of ``help, question'' etc. in order to have more readers/replies in trying to assist you. There are between 30-40 NEW/replies to post daily so we can't read all the posts on our limited time here...thanks for understanding.

* If you use the ``quote'' icon, please DELETE [B] bold at the beginning & ending of the quote. This makes it easier on our chronic, late-stage lyme eyes.

* To just reply without quoting, go to the top or bottom of screen in the black & white area to reply or post a new topic. Many of us couldn't see it when we 1st started posting. Thank you for helping us all out!
*
Bettyg, Iowa
 

I just want to put in my two cents here. Pelvic Pain can be from MANY different sources. Some pertain to Lyme and some dont. Do you have a good GYN and have you been checked for the things that can cause pelvic pain in women? (endometriosis, fibroids, PCOS, Etc) I have Lyme and endo and fibroids and the Pelvic pain is terrible with endo but not b/c of lyme. Two separate issues.

Separating issues like these WITH Lyme involvement is one of the most daunting tasks. Keep posting and keep researching for yourself.

Much luck to you. Dont rule other factors out just b/c of Lyme,
Trails
 

If there is no cause which can be identified, the cause is likely to be myofascial, according to the work developed in recent years at Stanford by former pelvic pain sufferer David Wise (not an MD) in conjunction with urologist R Anderson.

see http://pelvicpainhelp.com/ http://tinyurl.com/9yd5x
_A Headache in the Pelvis_ (book)

Pelvic pain was my first symptom and the Stanford treatment got rid of it completely in my case, tho this is not always the outcome. A great difficulty, depending on where you are, may be finding a good physiotherapist to execute that part of the treatment. If I dont get back to this thread I can be emailed.
 

The pain refers down the side of my pelvis, basically where the leg hits the hip, and down the back of my buttock, and up my back. I've had lower back pain that could be severe since my first ever cycle.

My LLMD believes this is being caused by a reactive arthritis salmonella infection. She does not think the Lyme is the root cause of this pain, but that the Lyme was just another straw of hay that eventually caused my body to react. I'm pretty darn sure she is right, because we added an antibiotic back to target salmonella, and within 48 hours I began to herx by having that pain ad with 72 hours it was debilitating, and then got better.

If this sounds like your pain, go to www.spondyloarthritis.org to learn more. The site talks about many forms of spondyloarthritis, and says that a reactive arthritis is rare. Who knows if it really is rare.

I should add, I saw a doctor who specializes in spondyloarthritis who said I don't have it because my x-ray was normal. But, he also said he couldn't tell me what I did have. Since starting the new antibiotic, I can feel most of my pain connected through nerves to the sacroiliac joints.

[This message has been edited by Aniek (edited 18 July 2005).]
 

I sought treatment for lyme finally due to pelvic pain. First I went to a gastronologist because I was having diarehha about 5 days a week with severe cramps.

The pelvic pain however was separate and came about two days after my period. It had nothing to do with my period though.

It would come on suddenly and be so intense I wouldn't be able to move. It would last for about an hour. I would take prescription naproxen which only took the edge off and I suffered through the rest and would be sore for days afterwards.

I saw a gastronologist, had a colonoscopy two months before I started lyme treatment.

The odd thing is that I had the one of my worst episodes just days before the colonoscopy. I can remember sobbing due to the pain. Its been 8 months since the colonoscopy and the diarehha and the pelvic pain haven't returned since the few days before the colonoscopy!

The gastronologist just said a colonoscopy isn't therapetic and that there was nothing wrong with me. He did not want to hear anything about my seeing a lyme doc. totally blew me off.

My first lyme doc said the colonoscopy cleared out the lyme bugs in my intestines. Maybe. I don't know but I have continued lyme treatment with the fear that it may return.

Good luck. I think you will like this site most of the time. Sometimes they get a bit childish and fight with one another. Its very silly. Most of the time I just sit at home and laugh at it.

They all confirmed that it was neurological in nature and caused by the Lyme. They gave me a diagnoses of Interstitial cystitis.

I have found long term bactim has helped with the pain the most... I have been on this treatment for almost a year.

...and consume some natural suplements against Candida with every meal or fluconasol 200 mg/day.
 

Did the urologist make any suggestions based on the lyme diagnosis or just to see a lyme doc?
 

Increase your calories you are eating. Meat and fat is the easiest way to do that.
 

the after effects of antibiotic kill-off of borrelia will be felt in the bladder and the entire length of urethra.

if pH of the bladder not normal, kidneys will be affected, as well.

i suggest tapering-down, and off the anti-depressents, etc.---slowly.

i suggest that the doc who prescribed the antidepressants, and anti anxiety crush them up and put them in his own i.v. bag----all at once, for "good measure," to prevent himself from prescribing them again; it'll be "therapeutic" for him. he'll get an epiphany.

[This message has been edited by pq (edited 21 July 2005).]
 

She did tell me Lyme treatment was probably my best shot at getting it better. And i ahve continued with Bactrim treatment with my LLMD...this helps the pelvic problems, and I think is also helpuing with my babesia symptoms.

Yes I was suprised that they were so open about Lyme also... they said they have had several Lyme patients with my similar situation. One woman had a misdiagnoses of MS when she first came to see them...turned out to be Lyme.
 

She did tell me Lyme treatment was probably my best shot at getting it better. And i ahve continued with Bactrim treatment with my LLMD...this helps the pelvic problems, and I think is also helpuing with my babesia symptoms.

Yes I was suprised that they were so open about Lyme also... they said they have had several Lyme patients with my similar situation. One woman had a misdiagnoses of MS when she first came to see them...turned out to be Lyme.
 

The pain can be horrible. And if plugged up, your whole body cannot release the neurotoxins via the lymphatics and cannot deliver the nutrients where they need to go. Nor can it deliver the medicine.

Take care.

 

Imagine what your hand and lower arm would soon start to feel like if you clenched your fist day and night, never letting up, without being aware of it. This gives some idea of the pathophysiology that has been described and treated by Wise and Anderson's group at Stanford.

I left out of my earlier post this abstract of a recent treatment study by that group:
http://tinyurl.com/a8ozx

In the past Wise has said results in people with systemic illness were not quite as good as results in the general unexplained chronic pelvic pain population. However the group treated in this study comprised treatment-resistant cases... yet exactly what that means is unclear, as other commonly-used treatments for this ailment are of little value and fail significantly more often than they succeed.

Dunkirk,

> The gastronologist just said a
> colonoscopy isn't therapetic and
> that there was nothing wrong with me.

A theraputic result of colonoscopy is quite consistent with the Wise/Anderson paradigm for idiopathic pelvic pain. It could address pathological neuromuscular "knots" known as trigger points, whose signifigance has been recognized only relatively recently. Such a mechanism might be expected to cause a brief exacerbation of the ailment for a few days, followed by lasting improvement afterward (but I am not sure that is an iron rule).

In fact, physiotherapy of the pelvic musculature via the rectum and vagina (for those that have one) is a mainstay of the Stanford treatment. (Unfortunately this is the only way to access the deep musculature of the pelvic floor, and most people require approximately weekly treatment for several months to maximise gains.)

However the acute presentation you describe is somewhat inconsistant with the entity Chronic Plevic Pain Syndrome. Did you experience repeated attacks? Any residual symptoms in between attacks?

[This message has been edited by hodologica (edited 21 July 2005).]

[This message has been edited by hodologica (edited 21 July 2005).]
 

Do you have cramping pelvic pain, or more stabbing down the urethrea? I get stabbing pains.

I saw obgyn..perfectly fine. I have had blood in urine in the past, so urologist did flow testing( i sometimes retain urine and my bladder closes befor i am done, or i need to strain to finish) and they did a cystoscopy(normal)

He doesn't know what it is, and was concerned about neurogenic bladder(major MS sx)So in the meantime, i had an MRI done to rule out MS, since i have many neuro sx)

MRI came back perfectly clean. Neuro said absolutly no signs of MS.

So now i have to go back to urologist and figure out what is wrong.

I wonder if this pelvic pain is linked to a urology problem or is it just a "Lyme Pain" like the other mysterious pains i get around my body.

Good l uck to all of you, we'll figure this thing out!...jellyfish

 

SHe did say that lyme treatment was probably the best option for me.

I was also suprised at how knowledgeable and willing to accpet Lyme disease and its effect on the nervous system.

She told me she has seen several patients with Lyme with the same problem of unknown pelvic pain... one woman came to her with an MS diagnoses of 15 years...turned out to be Lyme.... suprise suprise....!
 

How does one clean out the blocked lymph nodes in the groin area? I have this quite often.

I am aware of general toxin removal techniques, but is there anything specific for these?

thanks
paisley