Can brief indoor tanning cause facial rash and yucky feeling if have Lyme?

[MsWobbles]

Hi, JackieCA, Wonko, and all,

Was thinking I might have lupus because after indoor-tanning briefly (4-6 min.) to build up my D, I get tingly feelings and paresthesias while tanning, have a worsened facial rash later, and feel way worse for a few days.  

Can Lyme cause a facial rash with UVB exposure?  I heard that UVB can kill some of those Lyme critters in the blood and then, since they build up, it can result in a "yucky" feeling which I do get.  Last time I tanned for only 4 minutes I ended up feeling nauseous.  Thought for sure it was lupus - but my lupus tests came back negative.

So, does anyone here who has Lyme find they have increased facial rash after exposure to UVB?

Thanks.

WAF

[JackieCalifornia]

W&F,

I'll leave that discussion to Wonko, since she is far more conversant with Bartonella than I --

Your doc sounds on top of things -- that's very fortunate.

Oh, something I meant to ask you -- I was just rereading earlier conversation above -- about your Synthroid meds.  In ways I don't know much about, Lyme mucks with the endocrine system incl. thyroid function, and I have had thyroid problems that happened around the same time I probably first got Lyme, so whether it was a timing coincidence or cause-and-effect, I don't know.

That said, since I'm now on thyroid supplements, I've done some reading and it seems a reasonably recent realization among some docs that not everyone's system can break down Synthroid (generic:  levothyroxine, aka T4) into its component parts, as it needs to be done to be useful to the body.  Some docs firmly believe the traditional view that only T4 supplementation is necessary, but others also supplement with cytomel (T3), which is one of the bits that T4 is supposed to be broken down into.

My doc tried me on just Synthroid (T4) for a while, and when not much happened, she switched me to T3 and separate T4.  Wow!  Big difference.  I haven't read much more than that, since my doc was open to the concept and suggested it, but you may want to do some reading and raise this with your doc if it seems worth trying.  I don't know that there is any downside to supplementing with both.

(Some people used to take 'natural' thyroid supplements (sometimes called 'Armour'), that is, ground up [pig?] thyroid, which already contains both T3 and T4, but with concerns over mad cow (mad pig??) disease, that practice has largely been abandoned for the synthetic hormone supps like Synthroid and Cytomel...which gives docs the ability to prescribe only T3, whether it's adequate or not for a particular patient.

There is probably a thyroid group here on MedHelp, and I just googled/searched "thyroid T3 T4" and got some good hits.  Mary Shomon also has a website that tells more than I ever wanted to know about thyroid.  

Anyway, just a thought.  Taking T3 with T4 made a huge difference for me.  What I thought were Lyme fatigue symptoms were in some fairly large part thyroid symptoms (which in turn could be related to Lyme).

Take care!

[MsWobbles]

Thanks for your thoughts.  

Yesterday my LLND looked at my yucky facial rash which exacerbates with tanning (even though my face is not exposed) and said it might be Bartonella.  I also get red spots on lower limbs.  Sent in blood to Igenix yesterday.  Hope for some positive feedback!!

Is Bartonella easier to treat/cure than just basic Lyme???   Hope so!

WAF

[JackieCalifornia]

I don't know that Lyme can *turn into* MS, ALS or lupus, because Lyme is a bacterial infection.  But because the causes of MS and ALS are unknown/murky, it's hard to say and someday maybe somebody will find a link.  (In a book about Lyme, "Cure Unknown", by Pamela Weintraub, she highlights an MD named Dave Martz who had been diagnosed with ALS that turned out to be Lyme.  He has recently been president of ILADS.)

Because there is much not known about MS, ALS and even lupus, there may be commonality in some ways to Lyme, but perhaps more in the way of misdiagnosis than a direct link of one of those ailments 'turning into' another.  What looks like an autoimmune disease may have an unrecognized cause.  Docs are often happy to diagnose MS or ALS or lupus when the illness is actually Lyme, but that doesn't mean they are related or that the diagnosis is correct.  What's the saying:  "Correlation is not causation."  In other words, just because you and I both wear yellow sweaters on Tuesday doesn't mean we got together ahead of time and agreed to do so.  Coincidence happens.  May or may not apply to Lyme and MS/ALS/lupus.

About Vitamin D -- yeah, the medical standard (dare I say 'fad'?) of the moment is that we are ALL Vitamin D deficient.  It may be true.  We all spend a lot more time indoors than we did 100 years ago, and our genetic structure is set up to take in the right amount of sunlight to make Vitamin D based on where our ancestors lived millenia ago:  the less sun there is (like in Scandinavia), the paler the people are so that their skin can absorb what light there is to make enough Vitamin D (and they eat fish which gives more Vit D too); on the flip side, the more sun there is (like near the equator), the darker the people are because they get so much sun they need more pigmentation to protect them from too much sun, and their Vitamin D production as it exists is fine, even with a natural 'tan'.  The problem arises when we all live indoors and wear sunscreen 24/7 and don't get enough sun to make enough Vit D, so the docs now push taking Vit D supplements.  I personally take Vit D-3 supplements, just added them about 4 months ago, and it seems to help, tho for years I refused.

You're right, the current scare tactic is to tell people they Will Get Cancer if they don't take Vitamin D, and I confess I do not understand the whole Vitamin D chemistry.  I simply don't know.

What you say about Vit D deficiency perhaps being a protective action by our bodies is something I have read also, including the Marshall approach, and his view is (I think) to lower Vit D levels for a period of time to starve out the Lyme and 'reset' the body, as you describe above.  I do NOT understand the biochemistry behind this view and have no current intentions of trying it, but it's out there for consideration.  I personally feel better when I get some sun, but everyone is different.  If you google/search 'Marshall protocol' you'll find it.  I am leery of the website because it has a cult-like feel to it, but hey maybe I sound that way here too!

There is a group called CALDA, the California Lyme Disease Association.  I belong or used to belong (?) but I don't visit their website or get their newsletter anymore, I don't think (that is, I'm not really paying attention).  The website I go to most often (besides here) is ILADS [dot] org, the main site for LLMDs.  There's no membership required to access the ILADS website, at least at the level I read it.

Here is my list of Lyme-related websites I visit sometimes:

ilads [dot] org
lymediseaseassociation [dot] org
truthaboutlymedisease [dot] com
lymenet [dot] org
chroniclymedisease [dot] com
lymedisease [dot] org (California Lyme Disease Assn -- CALDA)
standupforlyme [dot] org (I think this is a Texas-oriented website)
txlda [dot] org  (txlda I think is short for Texas lyme disease association)

Many areas have their own local Lyme websites.  Google/search for "Chicago Lyme" or "Nebraska Lyme" or wherever you are and things may pop up.  Sometimes you have to try several geographic descriptions, esp if you live in the Northeast, for example, where state lines and cities are so close together.  The quality varies, so you just have to keep your antennae up and stay cautious.  If diagnosing, treating and curing Lyme were easy, we all wouldn't be here doing this.  Sigh!  Someday.

[MsWobbles]

I think I read somewhere or one of you told me some time ago that Lyme need vitamin D to reproduce.  So if you drop your D down really low, maybe they just die off and don't replace themselves???

Jackie, what again is the name/website of your California Lyme association?  I think I'd like to join.

WAF

[MsWobbles]

Thank you both for commenting.  Wonko, you're the only Lymie I've heard of who gets the lupus-like skin rash (other than me).  But can't Lyme also lead into/become other disease conditions eventually like MS, ALS, and lupus etc.?

JackieC. I would like to discontinue D supplementation (my only other med is Synthroid and, more recently, nighttime oxygen).  However, they've scared me about the lack of D leading to some kind of cancer!!  I mean, I could get rid of Lyme and end up with cancer.  I can't help but feel that D deficiency might be our bodies' way of helping us deal with/eliminate our disease conditions.

Thanks so much for the information.  When I have more time, I look forward to reading it!

WAF

[wonko]

First of all, if you want to get more D, there are safer ways to do it than indoor tanning!  As a fair skinned person with skin cancer in my family, I stay away from all tanning.

But that aside, when I read about your experience it sounds like it could be heat related.  Since getting sick I've had a lot of trouble with heat.  If my shower gets too hot, it can within moments cause me to become very sick, and at times overheating has left me confined to bed for days.  Heat can also cause immediate increase in tingling/pins and needles.  And I also get red face rashes, I have a pic of this on my profile that you can see if you are my MedHelp friend.  It does look a lot like the lupus malar/butterfly rash.

Not everyone with Lyme and co has heat intolerance, but those that do need to be careful about exposures.  Of course you are right that people with lupus have sensitivities as well, and only your doctors can help you figure out what is the culprit in your case.  

As far as D, I was very deficient and when I started supplementing I bought a very low dose (400 IU) and worked up very slowly, because I was worried about a negative reaction to a sudden increase in my intake.  I'm not saying the same would work for you, that's another one for your doctor, just sharing my approach.

Hope you're feeling better and staying out of the tanning beds!

[JackieCalifornia]

And here's a thought:  if you google/search 'exercise lyme disease spandex rosner', you will find a short youtube by Bryan Rosner, a Lyme patient who has written several books discussing various treatments for Lyme and what his thoughts are.  Whether he is right about any of it, I don't know, but I pass this along fwiw.  And so:

There is a treatment approach to Lyme created by an MD in So Calif named Trevor Marshall.  It is called (what else) the Marshall Protocol.  I have tried to understand it but it all trails off into gibberish for me after a while, or maybe I'm just dense.  Or maybe the people who post on his behalf online are way 'out there'.  I don't know.  

But anyway, Rosner thinks there is something beneficial to Marshall's approach (see the video mentioned above in this email), a key part of the approach being complete sun avoidance for an extended period of time, to starve the Lyme bacteria of the Vitamin D that the sun produces in your body when you get sun exposure.  Lack of Vitamin D, so the theory goes, starves the Lyme bacteria and they die.  Why is something I do not understand.

So ... if you get bad effects from the sun and aren't on any meds that could be causing that reaction, then you might want to look into the Marshall approach and see if it makes sense to you.  If you do and if it does, would you post back here and tell us (me) about it, because I haven't heard directly from anyone who understands it and uses it.

[JackieCalifornia]

Remind us what meds you are on?