Research Findings 6-30-19

Women's health
1

Hi All,

Read the article by Perez-Lopez & Vieira-Batista in 2017, vol 20, No 4 issue of Climacteric.

I won't link it because they will delete the post and some of you may find this helpful.

They note that although bacterial/viral theory once was suspected, they do not find support for it.

These authors say we should not use clob more than 240 days a year. They also say biopsies do not necessarily lead to diagnosis.

Also, they discussed white blood cells. When the neutrophils are too high, in comparison to the lymphocytes, then one will have inflammatory T-cells and cytokines that both inflame tissues. The ratio of neutrophils to lymphocytes should be between .78 to 3.53. If you have a recent blood test where you have a WHITE CELL DIFFERNTIAL count, get it out and check it. Find the neutrophil and lymphocyte results and divide the neutrophil number by the lymphocyte number, one should get a result between .78 and 3.53. The neutrophils will probably be 1.8 or 2.4 or something like that and the lymphocytes around 2.0 to 4.0. Ok, so I dug out my last Dec '18 blood tests and see that my ratio is too low at .72!
The inflammation is usually in response to antigens: bacteria, fungi, viruses, etc... which we know. One interesting anecdotal report was that certain drugs, carbamapezine and aromatase inhibitors are suspected of causing LS. (the latter is an estrogen blocker). By reverse logic then, blocking estrogen brings on LS, then having estrogen prevents or inhibits it.

Also, from pg 340 of article, "Thyroid disease seems to be the most common finding in these patients (12–30%)" AND, "The presence of autoantibodies in LS patients is very common, namely extracellular matrix 1 protein (67%)19, antibasement membrane (BP180 and BP230) (30–80%)20,21, and antithyroid antibodies (9%)22. Autoantibodies can be present in as many as 74% of women22 ." (The 19, 20, 21, and 22 are footnote designations). This is a long involved, but recent (2017) article. There are 96 footnotes that offer more info when I can get to them. These darn jobs sure do interfere with one's personal life.

Now, the question is which antibody is triggering the inflammatory response. The lack of estrogen idea fits well with the two "peaks" of this disease, namely pre-pubertal girls and post-menopausal women. It also fit s with males who, presumably, have little estrogen. More later as I digest this and some other articles. best, biscuit

2

HOWEVER, those of us with normal estrogen levels don't fit that theory?? I would like to know where the inflammation is coming from as well, since I take anti- inflammatory supplements, limit foods that are known to cause inflammation and hv normal thyroid levels as well? SOOOO FRUSTRATING! I believe mine is STRESS!

3

Thanks so much for taking hte time to type this all up, Biscuit! I" going to take a print out of this to my next doctor visit - the integrative guy who will be willing to read and assess ( the woman gynecologist didn't even want to hear the word vitamin D ( which is a hormone regulator - REGULATOR.... grrrrrr.

4

Impressive research. I will show this to my primary care doctor and get some blood work done. Thank you eggbiscuit.

5

Hence the gyn's pronouncement to me upon initial exam "yours was caused by too little estrogen". But I wonder how low it is compared to other women who do NOT have LS? I guess at our age they don't bother to even check the levels. Apparently having AV and LS speaks volumes. Not sure how I can get my GP to run an antibody test. When I called the medical center I was told only specialists run those, not primaries. So why don't gyns ask for the tests to be run after they diagnose us with LS? I had to ask my GP to run a thyroid test, but all that gave were the "acceptable TSH levels". This is why I was searching for an FM doc. Wasn't very successful . The tests Tom O'Bryan suggests are VERY $$$. Maybe you should consider a second career as an FM practitioner! You seem well suited to all this science. Seriously.

6

That is just BS that only specialists can run autoimmune tests. They are just antinuclear antibody (ANA) and sedimentation rate tests (SED.. very general. There are ICD-10 codes aplenty for those. A 10- year old drug dealer could order that. They just don't want to be bothered. I asked my GP to do it and he didn't hesitate. We both think mine will be high but the knowledge may lead somewhere! I think I will retire from PhD-ing and become a functional medicine/naturopathy/ alcoholic soothsayer, especially since I did not get my raise that I was counting on. !! :(

7

I'll write you a letter of recommendation! Seriously, it may be time for a second career and you are clearly very suited to science. (You might want to eliminate the alcoholic soothsayer part though.... "healer" may be better received). I wrote them down, will look them up to be better able to counter any objections and see what happens. I think I'm months away from my yearly appt though.

8

Ok! Maybe a letter from here would do better for a raise than what I get with my regular work. When you get a PhD, if you have been well-trained, you learn how to teach yourself most anything. Now if I could just teach myself how to get the right lottery numbers, I'd set up a commune for all the women on here who have nowhere to turn. biscuit

9

You're so funny. This forum is our commune.

10

A commune. Eek! Sounds too much like leper colonies of old. Maybe what we need is to form some sort of association that (somehow) encourages the medical community to do more research. My guess is few if any of us know anyone personally or have even heard of anyone who has LS. However, there quite a few of us who post here and more on FB. No doubt there are people the world over. Possibly thousands. This is something I wanted to talk with my gyn about (assuming she ever resurfaces with her own private practice). She told me she sees women every day with LS. I'm curious if she is compiling factual info on them or if she just has a vague recollection of different patients. How else will we know what commonalities there are that might be an indication of the cause of or characteristics that make us susceptible to the disease without doctors doing this? Even if she is compiling some info it would not be very encompassing. For instance she has not ordered a thyroid test for me. She never even asked me if I had any AI diseases. I have seen other gyn's in that hospital, but I doubt she read through my previous records (assuming they were available to her). More encompassing health histories would have to be recorded. What about diseases we have had or have, ethnic backgrounds, weight factors, sexually active or not, had children or not, mental health. I have no idea how they devise questionnaires for medical studies, but it sure seems they are lacking in this case. And who wouldn't appreciate having clear statistical information re different treatments and their effectiveness?

11

Beverly you bring up a good point. We on this forum have so much more information than our doctors. I think it would be a good idea if we put together a questionnaire to leave with the doctors to give to their LS patients who can fill it out, if they want to, and mail it to one of us anonymously so that we can conduct our own survey and see if their is any commonality. I think we should put a forum together to do the survey. egg biscuit and Nancy KB have done a lot of research and they seem to have a good handle on a survey project. Let's see who wants to be in charge and put a questionnaire together. It would be nice to do this project outside of this forum and exchange personal emails to get this done. Anyone's thoughts?

12

It's a great idea but without an institutional review board, the dr. would not participate. He/she could be sued. I have tried to see how it could be done here but don't see the software architecture needed. I read these studies and always check to see how many women participated. Usually it's in the hundreds and that's a pretty good indicator of results that can be generalized to the entire population. That's called "sample size." When doing any human based research, a legitimate study must have an adequate sample size or the findings are considered "anecdotal," which means interesting but not statistically significant.

13

This makes sense. I feel like our hands are tied unless we can get a review board together of doctors.

14

Ah! My life story. Good...but impossible ideas. So how does an "institutional review board" get formed? The doc could be sued for sharing info? What if there were a "permission to share info" as part of the questionnaire? Could a doctor do this for their own edification? It would certainly make them more knowledgeable re treating patients. Thought we were already signing agreements about our info being shared, or am I confused?

15

S,

I found this short piece last night regarding Vit D and inflammation which is a large partof Autoimmune diseases that seem to be correlated to LS. Am looking for this full article

"In the paper, published in the Journal of Investigative Dermatology, researchers exposed 20 volunteers to a light resembling solar radiation to induce a sunburn on a small patch of skin. They then gave the "burn victims" large doses of vitamin D and followed up with participants one, two and three days (and a week) later to measure skin redness and thickness. The researchers found that vitamin D decreased inflammation, redness and swelling, compared with taking a placebo, and this effect increased in proportion to how much was consumed. D also appears to increase the activity of a gene called arginase-1, which is involved in tissue repair and healing. Taking 50,000 international units of vitamin D—125 times the recommended daily allowance—led to a significant reduction in redness and swelling, compared with the placebo. Those who took 100,000 IU had even less swelling, and those who took 200,000 IU had the greatest reduction in inflammation.'

16

Hi eggbiscuit. Interesting about Vitamin D. Is there a difference between Vitamin D and D3? I take 10,000 IU of D3 daily. Maybe I should up it. Nancy KB compiled an ingredible list of vitamins that would be beneficial for inflammation. If I took all of them I would be popping pills all day and be in the poor house, so I have selected a few to take daily.

17

If we take over the recommended dose of Vitamin D - can we overdose on it? Will it make us sick? When my doctor told me to start taking Vitamin D because my levels were low (this was like 6 years ago) - she told me to take 4000 IU a week! So now I'm thinking I need to up my Vitamin D....

18

DEBBZ1989- Yes, you can get something called VITAMIN D TOXICITY. The important thing is to balance it wirh VIT A at the proper ratio. for example Uf tou are taking 5,000 ui of VIT D3, you should be taking between 10,000-15000 ui of VIT A. Several years ago when I went to my Gp because I was run down snd had no energy, he tested my BIT D3 level and it was a 4! He put me on 50,000 UI OF D3 for 3 months, then re- tested me and decreased it to 5,000 ui daily which I currently take. I also take VIT K2 AT NIGHT, NOT at the same time as D3 to make sure it is correctly absorbed into the body. The list of supplements IS LONG, but I am willing to pop 27 pills everyday to keep my Ls in check, to decrease inflammation and to heal my weakened immune system. It's all about balance- from diet, to supplements, to stress and tracking what works and what doesn't FOR YOU!

19

OH you dearheart, Beverly! I hear your passion about wanting to solve this totally egregious affront to humanity.

I think we need to think in terms of searching out benefactors who are interested in underwriting "rare" or "orphan" diseases.

I looked that up earlier today and find we will have stiff competition even at that. There are so many truly horrifying things out there that are deadly or painfully disfiguring etc. This one won't kill us. Perhaps we need to appeal to those who are working to right the wrongs (or simple neglect) against women in general though that would be fraught with sensationalism etc.

I'd be interested to know how LS is perceived and acknowledged in other countries, to get a broader appeal started. So if anyone on this list speaks/reads french/german/italian/czech etc that might be a good start...

20

Exactly, Karen - I'm totally with you there. I'll eat beans all month if that is that is what it takes for me to feel comfortable.
Smiles _ I've even bought myself a couple colorful pill containers so that I only have to do the dividing up into 7 morning and 7 evening cubbies once every two weeks.
I'm finally comfortable. The supplements don't cure our labia architecture loss, but I'm sure they have at least kept my vagina open should i chose to have use for that; and my forchette is not split and going poo is back to comfortable.

For you newer dears, I've even tested out foregoing my vitamins when i couldn't afford them for 6 weeks. I was fine for 3 weeks ( we are all different) and then I kinda wasn't, no matter how good a girl I'd been about no sugar... sooooo, not again. Even the cheapest, most artificial vitamins/minerals have proven to keep me comfortable. grin - that's my story and I'm sticking to it....