Research Findings 6-30-19
Posted , 6 users are following.
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
4 likes, 69 replies
karen23320 Guest
Posted
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!
Nancy_K_B Guest
Posted
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.
susan43705 Guest
Posted
Impressive research. I will show this to my primary care doctor and get some blood work done. Thank you eggbiscuit.
beverly52803 Guest
Posted
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.
Guest beverly52803
Posted
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. !! 😦
beverly52803 Guest
Posted
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.
Guest
Posted
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
susan43705 Guest
Posted
You're so funny. This forum is our commune.
beverly52803 Guest
Posted
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?
susan43705 Guest
Posted
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?
Guest susan43705
Posted
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.
susan43705 Guest
Posted
This makes sense. I feel like our hands are tied unless we can get a review board together of doctors.
Guest susan43705
Posted
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.'
susan43705 Guest
Posted
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.
Debbz1989 Guest
Posted
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....
karen23320 Debbz1989
Posted
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!
Nancy_K_B karen23320
Posted
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....
Guest Debbz1989
Posted
Hi Debbz,
You can overdose on D but I have seen people take 50,000 unit a day for months and they were fine. Doctors get 6 weeks of nutrition in medical school. My mother's dr told her she needed 50 grams of protein a week. She needed at least 75 grams a day to rebuild tissue. Vegetarians are in a bad spot as they rarely get the correct amounts of amino acids.
What is your level now? For best health, it should be at least 50. You don't want it over 100. You can look that up. Should be able to find it.
best,
biscuit
Guest susan43705
Posted
Hi Susan,
Nancy is right about taking Vit A to balance out the D3. Also K2 (menaquinone) helps with absorption and bone density. You will not lay down new bone after 30 w/o K2
best,
biscuit
susan43705 Guest
Posted
Hi eggbiscuit. I do take Vitamin A with the D3. I'll check out the K2. Thank you. I know that was on Nancy KB's list.
Debbz1989 Guest
Posted
I looked up my last blood test results - and my D level (if I'm reading this correctly) was 42! You say it should be at least 50... so I guess I need to up my Vitamin D dose. 😃 Thanks for the info! 😃
Guest Debbz1989
Posted
Debbz, Yes, I have been told by at least 2 docs that 50-70 was ideal. Five thousand IUs a day is a safe dose they tell me but I see Nancy and Karen, I think, recommend higher doses. I knew someone who took 50,000 units a day for months and was fine. Vit D is important for so many of the body's chemical reactions and so is zinc. I take it and Vit D every day and since I started that, colds and flu are less frequent. I also notice when I stop taking Vit B and C. Within two weeks I am sluggish and depressed again. Course now I am just irritable with whatever it is that I've got. How are you doing?
beverly52803 Guest
Posted
biscuit, are vitamin levels typically part of a blood panel? I don't remember seeing them. Or is this one more thing I need to ask for that I will be told is not typically tested?
Just looked to see the last time I was even given a printout and that seems to be 5 years ago. Maybe this a money savings idea. Didn't see any mention of vit levels on that old one.
Debbz1989 Guest
Posted
I think I'll try the 5000 a day and see how that goes. 😃
I'm ok... thank you for asking. I'm not "as depressed" as I was before with this LS diagnosis... I've gotten to a point where I just want to find out everything I can about it - and find a way to get it into remission and be able to live with this (since I have no choice.) It seems to be clearing up with the clobetasol, but I still have some white patches - and occasional itching, but not bad thankfully. The fusion (hood is fused to the clitoris) is what's really upsetting me the most. I want it to unfuse and go back to normal.:(
Aside from all of that - I'm doing ok. 😃 I'm so thankful for all of you that have answered questions and just made me feel like I'm not alone. ❤️ It's helped a lot. Thanks for all your posts and help! 😃 They are much appreciated.
Guest beverly52803
Posted
No, vitamin levels are special tests ordered in addition to CBC (complete blood chemistry) or CMP (comprehensive metabolic panel). They're easy to order however, if dr suspects a deficiency and not normally expensive. Neither are ANA or Sed rate of thyroid peroxidase (antibodies)
Guest Debbz1989
Posted
Debbz,
You're welcome. Glad you are seeing some improvement with the clob. That's one thing I am always willing to do is help. I go back to my dr #6 tomorrow to see if she can tell me anything about the new problems. This is getting so old..I AM depressed.
susan43705 Guest
Posted
Hi eggbiscuit, Sorry to hear you have new problems. I hope you get some answers.tomorrow. I'm looking for a new gyn. One would think if it is auto immune and with proper testing the doctors could figure this out. I'm tired of the obsession.
beverly52803 Guest
Posted
biscuit,does easy to order mean a GP would agree to order them because I patients wanted to know? What is he doesn't suspect a deficiency ?
Also, is the SED the same as the thyroid peroxidase you just mentioned?
beverly52803 susan43705
Posted
Wow. I better go to bed. That wasn't even English!
susan43705 beverly52803
Posted
Beverly, what do you mean that wasn't even English?
Debbz1989 Guest
Posted
Biscuit - I'm so so sorry that you're depressed. 😦 I've been depressed too - so I feel your pain. 😦 It's SO HARD!
I'm so sorry you're having new problems. 😦 I hope your doctor can help you tomorrow at your appt.
(((BIG HUGS))) to you
beverly52803 susan43705
Posted
What I had typed. Then I proceeded to reply to you instead of myself! Way overtired last night.
beverly52803 Guest
Posted
biscuit, I have ordered Super Strength B-complex and am now expecting great things based on your experience. It better work as I can't force down another capsule!
susan43705 beverly52803
Posted
Well, I must have been tired too because when I reread it after I sent it to you I saw the errors. Grrrrr.
beverly52803 susan43705
Posted
susan, not to worry. Most of the parts I'm losing are between my ears.
Guest beverly52803
Posted
Any general practitioner has the power to order almost any kind of blood test. If he suspects thyroid hyperactivity or hypoactivity he used the appropriate ICD-10 code, and then checks the boxes on the lab form corresponding to the diagnosis code (ICD-10).
The thyroid peroxidase is a specific test for thyroid autoantibodies, meaning you're asking the question, "Is my body attacking its own thyroid?" If the result is high, then the question is WHAT, exactly, has triggered the body to make an antibody to its own tissues......
The Sedimentation rate (SED Rate) is a test for how fast your red blood cells (erythrocytes) fall to the bottom of a test tube in a concentrated solution.. If you have a lot of inflammation, they will fall faster. But, locating the inflammation is another answer. For example, at our lab here in GA, the normal range is 0 to 40. My test result was 21, right in the middle. Therefore the clinician can conclude my body has no BIG generalized inflammatory conditions, which is good.
The Antinuclear Antibody (ANA) test is a test for autoimmune diseases that can include lupus, scleroderma, or arthritis or psoriasis. If it is positive, then the person has an autoimmune condition in which the body attacks certain kinds of proteins in the cells, hence arthritis and lupus. My test result was negative.
Therefore, since my thyroid antibody test was positive, I know I have those, but, I do not have widespread inflammation (SED Rate), and likely only localized inflammation in the LS region (Still really do not know if it's LS). I also have no ANA titers so the body is not attacking certain cellular proteins.
Just got back a little while ago from Seeing Gyn No 6, who I guess I will stay with at least until we complete The Latest Remedy. She says IF there's LS, it is tiny area on perineum and wouldn't be causing the pain I've got. Does not want to biopsy until she sees some LS. Did another culture and is still on the "Need estrogen" issue. Volunteered that she herself is taking estrogen. (She's 44) . Prescribed more estrogen that costs a fortune. Now I am out of pocket $1,200 on this biznass and it's frustrating. The last pharmacy that compounded my medicines, it turns out, gave me off the shelf versions, refused to run it through the insurance and charged me full compounding price; $110. BEWARE people. Check out your scrips before you leave the store!
Guest beverly52803
Posted
All I can say is that when I don't take it, in about 2 weeks, I am not feeling as well. When I start back, in about 5 days, I begin to feel better. Same for C.
susan43705 beverly52803
Posted
Hahahahahahaha.
beverly52803 Guest
Posted
It's good you've been able to isolate the effective ones. I've been taking a slew of supplements for months now and don't feel any different. The temperature, pollen, and humidity seem to affect me in more discernible ways. BTW I stopped into a chain vitamin store today on my way back from Trader Joe's and was astounded by the high prices of vit A and K2! I might be claiming a moratorium when I run out of my current supply of all the rest.
Guest Debbz1989
Posted
Thanks Debb. Yes, after 6 months of this and barely keeping up with work, it has been a struggle. Friends will not talk to me about it. I guess they are insecure or uncomfortable but hey, they've got the same anatomy (and likely similar problems)
I keep up with work (which is abut 60 hrs a week) and try to post something useful here when I can.
More on that later.
biscuit
Debbz1989 Guest
Posted
Biscuit - I'm sorry your friends wont talk about it. I haven't talked to too many friends about this because I didn't want anyone to know i had this... I felt like they'd think it was something "I" had done to get this.... but as time goes by - I'm getting more comfortable talking about it (with certain friends.)
60 hour work weeks?! Ouch! I hope you find time to rest and take care of YOU. ❤️
Didn't you say you had a doctor's appt this week? I hope it went well.
Guest Debbz1989
Posted
Hi Debbz,
Yes, I normally work 60 hr weeks. I originally thought my "friends" would want to talk/hear how I was doing but NOOOO. Some people are not really friends. Friends should come in when the world goes out. If my employer found out about this they would do everything they could to fire me.
So, yes, I went back to dr and she told me to stop the two compounded meds (which turned out not to be compounded after all) and gave me a new estrogen replacement suppository. A little concerned about the cancer risk.... It's always something. She still thinks most of the problem is due to low estrogen. I think I heard her say, "Looks pretty good." Also got a call back from local vulvar specialist who said they did not do the platelet procedure (O-shot) Am calling the guy in Alabama who pioneered the shot for all kinds of problems.How are you?biscuit
karen23320 beverly52803
Posted
BEVERLY- I get most of my supplements on AMAZON WITH FREE SHIPPING. I CHECK TO MAKE SURE THEY ARE GLUTEN FREE AND HAVE NO FILLERS AND I USE MY HSA CARD TO PAY FOR MUCH OF IT. WHEN I WAS DIAGNOSED, MY HUSBAND, HAD MORE TAKEN PUT OF HIS CHECK AND PUT INTO HSA ANTICIPATING POSSIBLE SURGERIES, etc. BUT IT HASN't been too terribly costly once you are on maintenance. SORRY CAPS LOCK WAS ON, ON PHONE, NOT SHOUTING.