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» LymeNet Flash » Questions and Discussion » Medical Questions » posting for my sister: lichen sclerosis vs Lyme Disease...

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Author Topic: posting for my sister: lichen sclerosis vs Lyme Disease...
livinlyme
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She has had some serious concerns since her LLMD was stripped of his practice and her health has declined rapidly in a short few years. she is now presented with lichen sclerosis misspelled sclerosus: the one rx was doxy and the second was vantin.. but for the past 4 years she has not been under treatment

I'm looking for helpful information regarding Lichen sclerosis et atrophicus of the female genital area and its possible relationship to Lyme Disease.

I was diagnosed with late stage Lyme Disease in 2003. Until 2010 (when my Lyme doctor was forced out of business) I had been treated with large doses of 2 antibiotics which seemed to keep the Lyme Disease relatively slow progressing.

Late in 2013 I was diagnosed with Lichen sclerosis et atrophicus of the female genital area and also with skin cancer of the same area. I had surgery in December to remove the cancer, but the following April I still had cancer.

Now, my doctor says that the area affected is so extensive she wants to try a topical cream treatment before considering another surgery.

I am interested in hearing from other people who have had similar experience or those with knowledge of this condition.

Anyone who has related issues concerning this condition please contact me via PM or reply on this thread so that I can relay information.

she had an account but forgets the log in information and the email address has changed she doesnt want to rejoin for fear of the negative world she is presently in. it will not help emotionally.

I told her i think she needs to get back on the vantin. and doxcy would not hurt either .. any input here please thank you

[ 06-16-2014, 05:05 PM: Message edited by: Robin123 ]

--------------------
"Hatred paralyzes life; love releases it. Hatred confuses life; love harmonizes it. Hatred darkens life; love illuminates it."

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cleo
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pm sent


Here are just a few of many linking sclerosus to borrelia.

http://www.ncbi.nlm.nih.gov/pubmed/10809977?dopt=Abstract

http://www.ncbi.nlm.nih.gov/pubmed/18490585

http://www.ncbi.nlm.nih.gov/pubmed/11455165

http://www.ncbi.nlm.nih.gov/pubmed/18490585

http://onlinelibrary.wiley.com/doi/10.1111/j.1365-4632.2006.02978.x/abstract;jsessionid=2D19CC9DBAD1846E9225247826A40D1B.d03t03?systemMessage=Wiley+Online+Library+will+be+disrupted +21+May+from+10-12+BST+for+monthly+maintenance

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lpkayak
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Thank you for links

--------------------
Lyme? Its complicated. Educate yourself.

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Catgirl
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So it sounds like lyme causes it, but which meds kill it? The last abstract says intramuscular ceftriaxone or penicillin. Who does this, an ob or lyme doc? I don't like the sound of using a topical steroid creme. Great links Cleo!

--------------------
--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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Keebler
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Berberine can be of great help with various uro-genital issues.

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=121034;p=0

BERBERINE – LINKS SET
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Keebler
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You mention a "topical cream treatment" being suggested by the doctor. Just be sure:

not steroid based

free of petroleum products (including alcohol)

free of anything artificial

What has helped very much for uro-genital topical application has been Herb Pharm Salves and also Mountain Rose Herb's Goldenseal Myrrh salve - in addition to taking Berberine capsules by mouth.
-

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Keebler
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Herb Pharm salves - just search for their site - or at iHerb & Vitacost, etc..


www.mountainroseherbs.com/salves/salves.php

Mountain Rose Herbs - SALVES

Goldenseal-Myrrh Compound (a salve)

I suggest ordering at least the 2-oz. size. If you like that, twice daily application will take two 2-oz tins a month. More frequent applications may be best for acute cases.

You might want a "panty liner" as the bees wax and oils melt just a bit (but not much at all really, most is absorbed).

But most panty liners are full of harsh chemicals and not so good for the environment. You can make some from the "Kitchen Towels" (really not very big to be call a towel, though) sold at Trader Joe's. A viscose piece. Hand wash the full cloth, hang dry overnight and then cut into 3 strips - fresh TP can be used on top of this if you like. Just wash the viscose strip each night and hang dry . . . one package will make six.
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Keebler
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Topical help, I am thinking might be excellent, in addition to other methods:

Find the website for SOTA LIGHTWORKS -- light can be very healing
-

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lpkayak
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Betterhealthguy.com

Healing lyme without antibiotis

I thinkits in the june newsletter-maybe google above

Really sorry i cant post link....it is at the bottom of page 26 of parasite warrior thread...in a post by greta

--------------------
Lyme? Its complicated. Educate yourself.

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Keebler
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-
Because of the possible lyme cause (or other chronic infection cause underlying the condition) steroid topical application could cause infection to blossom, even systemically.

It would be best to first look at a safer approach. Steroids even topical, can cause lots of trouble for anyone with lyme (whether or not the issue being treated is about lyme or chronic infection of a stealth nature -- but it well could be -- even they are not diagnosed).

In my case, within a week or two of Berberine and a Goldenseal Myrrh ointment, I was much relieved. All those thing cover a lot of bases.

For immediate topical relief, a calendula non-oily gel really helped but it needed frequent application.

link to come for that
-

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Keebler
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Not numbing, yet very soothing for various skin issues.

http://www.lilyofthedesert.com/shop/aloe-gelly/

Lily Of The Desert

Aloe Vera Gelly (notice how clear it is, free of oils and lotions).


CALENDULA gel (but not oily):

www.vitacost.com/boericke-tafel-califlora-calendula-gel

Boericke & Tafel Califlora® Calendula Gel

Many health markets carry this, as well as many web vendors.


http://altmedicine.about.com/od/completeazindex/a/calendula.htm

Benefits of Calendula


http://www.ncbi.nlm.nih.gov/pubmed?term=calendula%20officinalis

PubMed Search:

Calendula officinalis - 240 abstracts

One of those:
--------------------

http://www.ncbi.nlm.nih.gov/pubmed/22315631

Evid Based Complement Alternat Med. 2012;2012:375671.

Epub 2012 Jan 24.

Wound Healing and Anti-Inflammatory Effect in Animal Models of Calendula officinalis L. Growing in Brazil.

Excerpt:

. . . This experimental study revealed that C. officinalis presented

anti-inflammatory and antibacterial activities as well as angiogenic and fibroplastic properties acting in a positive way on the inflammatory and proliferative phases of the healing process.
-

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Keebler
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You ask if LS has a cancer connection? Just as that dx, LS, I can't say but it's likely not just LS but caused by other things.

Also consider that some of the petroleum ingredients in various topical creams are linked to cancer.

And lyme can also be linked, as some researchers' work is exploring.

To use a topical steroid cream is not going to ward off cancer so I don't understand the question.

When there are so many other options for topical relief and systemic support, those might be good to explore first.

Also check out the vulvodynia educational sites but, again, be wary of any topicals that contain petroleum products or steroids.

There are a few past threads on LS here . . . within the past year, I think. Someone had posted some really good research on that.
-

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Keebler
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There is an excellent LLMD gynecologist in California. See if you can find Robin123 for that name . . . and then call their office to see if there anyone of her caliber where your sister lives.

Or if that doctor might be able to help guide her in some way with literature, etc.

It seems best if she could see a LL gyn. for an expert opinion. This could be any number of things and it would need someone who is a good detective. IMO, LS is never just LS. It's a result.
-

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Catgirl
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Loving this thread and everyone's responses (all great)!

Keebler, what brand of goldenseal did you use, also how much berberine did you take?

--------------------
--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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Keebler
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-
www.mountainroseherbs.com/salves/salves.php

Mountain Rose Herbs - SALVES

Goldenseal-Myrrh Compound

I suggest ordering at least the 2-oz. size. If you like that, twice daily application will take two 2-oz tins a month. More frequent applications may be best for acute cases.

I mention here what I like best (Tahoma's Berberine Advantage) . . . although, since then Good State makes a Berberine with a clear gel capsule now though you can't quite tell the source of their berberine, it could be from a variety of plants.

Compare forms, source, all ingredients.

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=121034;p=0

BERBERINE – LINKS SET
-

[ 06-16-2014, 03:10 PM: Message edited by: Keebler ]

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Keebler
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Going back to the basics, I forgot to add this earlier. Even for creams, gels, ointments . . . ANY topical for uro-genital or skin use

Everyone: please feel free to copy & paste this to your links collection page to post the next time this question is asked, as newcomers - even if just wondering whether or not they have lyme and if they might - may not know about this caution and then get clobbered.


http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/100984?#000000

Topic: what do STEROIDS actually do to those with lyme? Risks, long term damage discussed. Links.
-

[ 06-16-2014, 03:27 PM: Message edited by: Keebler ]

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Keebler
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While neither will address underlying infection connection, yet both can also be of help systemically, first for microcirclation:

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/3/32567?#000000

GOTU KOLA - Informational Links Set


To help reduce inflammation and cytokine storms:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=031228;p=0

STINGING NETTLE LEAF (not root) - Links set

The herb, STINGING NETTLE may serve to compensate for the reaction by calming the the cytokine storm that is often part of a herx reaction.
-

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Catgirl
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Thanks Keebler! :)

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Catgirl
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Thanks Lp (found it)!

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--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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bohomojo
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quote:
Originally posted by Keebler:
-
You ask if LS has a cancer connection? Just as that dx, LS, I can't say but it's likely not just LS but caused by other things.

Also consider that some of the petroleum ingredients in various topical creams are linked to cancer.

And lyme can also be linked, as some researchers' work is exploring.

To use a topical steroid cream is not going to ward off cancer so I don't understand the question.

When there are so many other options for topical relief and systemic support, those might be good to explore first.

Also check out the vulvodynia educational sites but, again, be wary of any topicals that contain petroleum products or steroids.

There are a few past threads on LS here . . . within the past year, I think. Someone had posted some really good research on that.
-

There is a slightly higher risk of vulvar cancer if you have LS, according to the super specialists that I've seen over the years.
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bohomojo
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quote:
Originally posted by Keebler:
-
There is an excellent LLMD gynecologist in California. See if you can find Robin123 for that name . . . and then call their office to see if there anyone of her caliber where your sister lives.

Or if that doctor might be able to help guide her in some way with literature, etc.
-

That was my doctor- I flew across the country to see her! She is retiring in a week or so. She is excellent and did SO much for me.

She wasn't able to refer anyone to me - what she did was SO specialized that I will have to replace her with two or more physicians. [Frown]

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bohomojo
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That GYN/LLMD (in Palo Alto, CA) did have me on a topical steroid cream but not a very high dose.

I typically respond well to the steroid cream but am currently in a flare (possibly related to my menopause (?)

She also had me on a topical bioidentical cream of Testosterone and Estrogen that is very helpful.

I think I understand now (after reading this wonderful thread) why I had such a great year last year "down there". I was on a lot of Babs treatments, including two ABX. But a severe yeast issue has me off ABX at the moment.

Thanks for the great info.

Keebler, I'm going to try your suggestions!

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Keebler
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Because your doctor was LL, she knew how to balance. The antimicrobial meds likely balanced out the steroid cream. It's when used alone, that steroids can clobber.

Also, for all with any kind of uro-genital or mucosal irritations of mouth, nasal tract, consider the various viruses, especially in the herpes family and HPV. Cpn also to consider.

just FYI: see websites for HPV-6 (many with lyme deal with this) and

www.cpnhelp.org
-

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Tincup
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Keebler

[hi]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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bohomojo
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One more thing!

I've had "issues" since 2005- and I've tried many feminine hygiene products.

They now have several brands of 100% cotton and/or organic cotton tampons:
-NatraCare (also has pads)
-Seventh Generation
-Emerita
-Maxim

I think most of them also carry pads and panti liners. I tried them ll and my favorites are Maxim.

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Catgirl
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If anyone finds or knows of a doc who does this (abx), please pm me. [Smile]

--------------------
--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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livinlyme
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thank you for your responses.. I dont seldom get online any more but I have taken notes and relayed the information if any one can PM me with a dr in the north central region that may help please feel free she is planning a 178 miles trip to NY but a local one would be more helpful at this point we deal with medicare.. not that it helps too much.. to know this ..but hey..it is what it is..

--------------------
"Hatred paralyzes life; love releases it. Hatred confuses life; love harmonizes it. Hatred darkens life; love illuminates it."

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