Lyme and endometriosis

[Emily1]

Im hearing that information is coming about connecting lyme disease and endometriosis.

A doctor named Dr. Cook from California has been doing studies into this and you can find some of this from a simple search on the net.

Im curious if anyone who stops by here has been diagnosed with both? Apparently after antibiotic treatment for lyme these womens endo is resolving.

[firefly017]

I just stumbled upon this entry with a search because I was trying to find more information on endo and lyme...

I was diagnosed with endometriosis in 2000 at 20 years old. The diagnosis was confirmed with a laproscopy. I was put through the ringer with contraceptive after contraceptive... with no luck.

In 2003 I purchased a house in NY surrounded by woods. I love the outdoors so I spent a lot of time outside on my property (I have 2 acres). In early 2004 I started not feeling right... I went to my primary care physician and he did an ELISA test on me that came back negative... after 3 ELISA tests my doctor said I was fine, that I was being a hypocondriac and that he could put me on anti-depressants if I wanted... I totally respect the mental health field but I knew that I wasn't crazy or depressed or a hypocondriac... in 2005 after I had gained weight, had no energy and was sleeping 12-14 hrs a day, and have 3-4 migraines a week my friend strongly suggested I see a doctor her sister had seen because she said it sounded like lymes...
I reluctantly went to this doctor, he doesn't take any insurance so that was a major $$ risk... (at that point I had written off all doctors)
After a 4 hour doctors appointment and multiple tests done and ordered I had an appointment with the doctor scheduled 6 weeks later to allow all the tests to come back. At 4 weeks I got a call saying all the tests were in and that I should come in immediately...
I August 2005 I was diagnosed with lyme's disease bordering on chronic. FYI... my ELISA still came back negative but if the other doctor would have just done the western blot my diagnosis would have been staring him in the face...
Since August 2005 I have been on and off antibiotics. My lymes and co-infections seem to wax and wane with my menstrual cycles... I will be ok for a about 3 months off antibiotics. The first month I feel great and I think what "normal" would feel like but around 3 months at the start of my period I will take a nose dive, my symptoms of lymes swiftly return and my endometriosis symptoms are exasperated. I have seen the presentation on Dr. Cooks website. I am glad that someone is looking into this but I am also frustrated that there is no real information to help with this connection.

It would be great to know if anyone else is having the same issue.

[Emily1]

Hi firefly :)

Yes, youre right there isnt a ton of information out there yet, but doctors are working hard to get a handle on us fibromyalgia, fatigue, endometriosis, immune system problematic (and much more) folks. Many of us know about the old "hypochondriac" "psychosomatic" diagnoses. Been there done that. Ten years later I have absolute proof the things I was complaining of were quite real and physical.

Lyme unfortunately isnt the only infection showing up in folks like us. The best tests these days are PCR tests. You can look into these by a simple search. The other infections are mycoplasmas and chlamydias. Such as mycoplasma pneumonia and chlamydia pneumonia. Each has several types.

I am currently PCR and other test negative for Lyme. However, I came up positive for chlamydia pneumonia in my blood where it should not be hanging out. So due to this I am on long term antibiotics anyways which if Lyme is present they will also be hitting.

I just found it very interesting that lyme cultures were coming up positive in endo tissue and wonder if it would not be the same of the other bacterias.

I found my wonderful doctor at endfatigue.com after 6 years of reading about these infections being a cause of fibromyalgia etc. Antibiotics have helped me especially with the stranger symptoms such as heart palpitation and weakness/shaking episodes.

Best of luck to you

[princess_h]

I am so glad i found this discussion community. I have lyme disease and endometriosis. i was just diagnosed with lyme in november after nine years of intense struggle. had it not been for this amazing doctor i found who knew of the symptoms and sent my blood to a lab in california (i live in canada), i would have never known.

i became very ill (high fever, delerium, and flu-like symptoms) after a camping trip in the pacific northwest nine years ago. my paedeatrician at the time ordered the elisa lyme test and it was negative. as was another elisa carried out later that year, and another elisa done this past year. i have seen over 25 specialists in 9 years, who have suggested lupus, crohn's, m.s., and bipolar disorder. apparently this all has been the lyme, because i have advanced to a stage where i have nervous system involvement. last year i began having excruciating pelvic pain. i had a laparoscapy and they discovered severe endometriosis. the kind that is spread throughout the entire abdominal cavity (the kind that looks like blisters and rashes). i have no doubt that my 8 years of lyme disease set me up for the severe endometriosis.

i wanted to respond to the person who had posted that they are having trouble with pelvic pain every time they come off the antibiotics for lyme. My doctor has such success treating lyme because he uses antifungals along with antibiotics. i'm on doxycycline and metronadiazole (flagyl). because spirochetes lay egg-like cysts in the body, you cannot fully eradicate lyme without killing the cysts. the only drugs that do this are antifungals. a lot of doctors have been finding that longer treatment is necessary for lyme. i willl be on treatment for at least 3 months, and maybe 1 year. hope this helps! (if you or your doctor decide to use combination therapy just get your liver and kidney function checked every 2 weeks).

[princess_h]

To Firefly,

i posted some info in my message that might help you. you may not be going long enough on antibiotics, and may need cyst-killing drugs to go along with them. hope this helps!

[Lil E]

Lyme and endo? Great. I get flu-like symptoms every now and again. Last time my muscles felt hot, sticky with lots of pain, headache like what you get with the flu, bones hurt too. Suppose to be fibromyalgia but now I'm not so sure. I've never been tested for Lyme but have had opportunities to get it. These things last from two days to three weeks.

I was told I had ovarian cysts 2-5 cms but the pain was worse than having that. Gonna try Lupron, already had menopause (uterus removed 17 years ago ) so I guess I know what to expect. I use Toradol once in a while for the inflammation I get with my spine problems, good stuff. I'll see if we can't get more people here, most are at chronic pain but it will be good to discuss just endo.

[Kathi49]

Lil E,

I went the route of Lupron prior to my TOTAL hysterectomy. My Reproductive Endocrinologist wanted me to go through artificial menopause first (which would make things easier AFTER the surgery and did). She also told me it would help to dry up any residual endo that may be microscopic.

Okay, now for my note on Lupron..oh, boy! :eek: I was given the ONE shot that lasts for 3 months and then had the surgery. Anyway, it was a rough 3 months. I had hot flashes coming every 10 minutes and this lasted the whole 3 months. Then really bad migraines. But...everything was shutting down. It was a very rough period of time. However, it did and does work. After surgery she also put me on the Combipatch to also help with any residual endo. But I believe between the Lupron, the Combipatch and the surgery itself it took care of it. I have not had a return of endo and my hysterectomy was done in 1999. And after the surgery I had absolutely no menopausal symptoms. But things have changed since then and my requirements have changed. So, I use Premarin cream (low dose) and the Vivelle dot also next to the lowest dose possible. I am hoping that in the next year I can stop the Vivelle dot. The new rule of thumb is ERT for the shortest amount of time possible. I believe I read 5 years or so.

Read as much as you can about Lupron. It has been linked to arthritis and there have been some law suits. Just be very careful...it is VERY potent stuff! My ortho doc told me though that the arthritis bit is usually associated with continuining injections of Lupron...not just the one injection. But still...read up on it. I still believe my RE did the right thing...it just that my spinal stuff kicked in right after that surgery as well. I am not saying it is a bad thing to go with...just be ready for the SE's from it.

And last but not least I have talked with my new ob/gyn as my RE was retiring. And he said that Endo as Emily is alluding to is linked to all kinds of autoimmune conditions; fibro, etc. And/or that endo itself is a form of autoimmune disease. However, my Rheumatologist has run tons of tests and I have nothing autoimmune. In my case, my Neurologist has associated the aches and pains with Central Pain Syndrome or Central Sensitivity from the spinal pain...in other words...too much pain for too long so now I my nerves are wound up. I STILL maintain though that once those estrogen levels drop...there are definitely issues! It has been a balancing act for me for a long, long time. A good place to read up on the aches, pains, endo and arthritis is hystersisters.com. It seems like the majority of the gals there and myself who have had EVERYTHING removed will really feel the aches and pains afterwards as there are estrogen receptor sites all over the body. There is also a symptom list of too much or too little of any given hormone. Oh, and I wanted to ask...has anyone tried Danazol to help dry up endo? I only ask because that is what I was given over 24 years ago LOL! I just don't know if it is still used or not. The only other thing I can suggest is to have it lasered out. I did that over the course of 24 years...and was averaging about 2-3 years before it came back again. It seems to me and I really haven't been up on reading the latest and greatest that there was a nasal spray too.

I hope this helps a bit. :)