LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu

LymeNet on Facebook

LymeNet on Twitter




The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

LymeNet Flash Discussion
Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive


The Lyme Disease Network is a non-profit organization funded by individual donations.

LymeNet Flash Post New Topic  New Poll  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » Medical Questions » Scared, regret getting a steroid shot (Update 8/31)

 - UBBFriend: Email this page to someone!    
Author Topic: Scared, regret getting a steroid shot (Update 8/31)
sammy
Frequent Contributor (5K+ posts)
Member # 13952

Icon 9 posted      Profile for sammy     Send New Private Message       Edit/Delete Post   Reply With Quote 
I'm so scared. Terrified that I made the wrong decision today...

I got a steroid shot this morning and now I'm seriously regretting it!

I've been so sick, seems I can't catch a break. It's one crazy thing after another. I seem to be collecting one rare disabling disease/ disorder after another!

So the latest happening is still a bit of a mystery but the severity moved me to seek help today. I developed a strange rash after sitting outside in the shade one afternoon 14 days ago.

The rash appeared 24 hrs after outside exposure (in the shade only). It burns like nothing I've ever felt before, intense. A couple days later it transitioned into hives. Then micro pin head blisters. (All over hands, arms, legs, and feet.)

The blister rash then began to form circle patches. The circle patches progressed to sores. The sores have been gradually getting worse ever sense.

So I went to the dermatologist today because I was scared that the rash was not healing, instead it was progressively getting worse.

I was stumped as to why, so I stopped taking my antibiotics when the rash appeared. I feared a drug allergy or photo sensitivity. But by two weeks one would think that symptoms would be improving, (not getting worse) if that were the cause.

My dermatologist suspects that it may be a Lupus rash or Photoallergy. Yikes!!! She was even afraid that some of the sores on my hand were starting to necros.

She took a STAT punch biopsy of one of the sores. Then recommended a shot of high dose steroids...

She said that it is severe internal inflammation and the only way to stop this type of reaction is to use systemic steroids. That it was a matter of urgency to stop the progression of the rash and severe (possibly necrotic) sores.

I was terrified. I couldn't think. I trust this Dermatologist completely. She understands that I have a severe Immunodeficiency and Lyme disease.

She has saved me when no one else knew how to help me. She said that it was risky to give the steroid shot to me but that it was too risky to let the inflammation/ rash/ sores progress unchecked.

So I signed the consent, against my better judgement, and got the shot.

Now I don't know what to do!!! I'm so scared that Lyme and Co's could flare and get worse from the shot. I can't handle that thought.

I've also never seen anything like this rash before. It's so scary.

I would greatly appreciate any thoughts and prayers!

[ 08-31-2015, 12:34 AM: Message edited by: sammy ]

Posts: 5237 | From here | Registered: Nov 2007  |  IP: Logged | Report this post to a Moderator
TNT
Frequent Contributor (1K+ posts)
Member # 42349

Icon 1 posted      Profile for TNT     Send New Private Message       Edit/Delete Post   Reply With Quote 
I am SO sorry, sammy. That must be aweful to have those sores. I will keep you in mind and prayer.

I am glad you have a dermatologist that has at least a willing understanding of Lyme disease. Perhaps she made the right call.

I hope your LLMD knows about this and you are ready to restart the ABX as is necessary.

Praying for you.

Posts: 1307 | From Eastern USA | Registered: Oct 2013  |  IP: Logged | Report this post to a Moderator
sammy
Frequent Contributor (5K+ posts)
Member # 13952

Icon 1 posted      Profile for sammy     Send New Private Message       Edit/Delete Post   Reply With Quote 
I'm sorry I have not posted in quite awhile. I've been so very sick... Just trying to cope and make it trough each day.

Trying to deal with complicated debilitating symptoms, rare conditions, numerous unending doctor appts and tests, family drama and trauma...

I think that surely things couldn't get any worse, I've got to catch a break someday soon if I just hang on. But no not me.

There is always something else unimaginable waiting around the corner! One person can only withstand so much before breaking!!!

And I'm desperately trying not to break...

My Lyme doctor has been wonderful. They kept me alive. But now they're getting impatient because I'm not making enough progress with my antibiotic treatment!

I think that the antibiotics have been key in helping keep my Lyme symptoms stable despite everything else crashing around me (including my immune system and IgG levels!). Without those antibiotics, I would be bedridden at the very least.

Now since I've not made enough progress lately, my protocol has been greatly reduced. So frustrated! But I won't complain more here.

I just want to have some quality of life. To not have to fight so hard every day to live. To be able to be able to really play with my young niece and nephew. So that they don't grow up knowing me only as "sick" and "unable".

I want to be able to interact with people (like you, my friends that I miss terribly!). I'd also really love to be able to go out and do fun things again.

I just needed to vent today. This is a tiny glimpse of where I've been, where I am...

Posts: 5237 | From here | Registered: Nov 2007  |  IP: Logged | Report this post to a Moderator
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239

Icon 1 posted      Profile for Dekrator48     Send New Private Message       Edit/Delete Post   Reply With Quote 
sammy dear,

You have been through so much. I'm so sorry for all that you have had to endure.

I wish I had miracle answers for you.

I will trust in the Lord as I pray for you to Him who loves you dearly, to heal you, comfort you and fill you with hope for the future.

Big hugs dear friend.

[group hug]

--------------------
The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.

"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11

Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
Sorry to hear this. Sounds like the steroid shot was due to an urgent situation. That is the time when it often just has to be done. With antibiotics on board before, during and after, it can help cover the bases.

I don't know if you are taking antibiotics now (although you said you stopped some wonder if reaction and that could have been) but do keep in touch with your LLMD.

Although you are frustrated with the direction of the treatment, it may be time to seek another method. A LL ND, rife machine, etc. might be options.

Have a friend check the authenticity of all the Rx, OTC, supplements you were taking. Maybe you got a counterfeit?

Just hold on. This bumpy ride has got to get smoother. And with the shot, you may find some relief from the urgent skin stuff - very likely, actually. Back that up with immune SUPPORT, not a push.
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
you say this was from sitting out in the shade. Might there have been BOUNCED SUN?

Sounds like you may have been exposed to some kind of plant oil

or spraying - you might ask a friend to call whatever municipality you were in and inquire as to what kind of spraying they may have done for up to a week or two before you sat there

Also ask about removal of any toxic weeds. If workers removed some, chances are the oils traveled along a path even on their clothes - and if they sat on the bench . . . .

There could also be some kind of spray others left there from their skin.

Aerial spraying? This happened to some people in my state by helicopters that sprayed herbicides in forests and the spray drifted to peoples' yards. Your local Sierra Club might have some idea of how to track such possibility.

If this was your own yard, ask neighbors about any spraying - or pulling, cutting, burning of poisonous plants.

Kinds of trees around? Even if previously okay, this might also be considered if a new allergy is at play. Not the most likely yet possible if trees were shedding anything that landed on you.

Maybe developed a sun allergy - even if sun BOUNCES into your shade. [If you took doxy for even two weeks before and stopped, doxy can still burn for quite a while after stopping. Some other photo-toxic drugs can, too.

St. John's wort ? Not sure if recall correctly but there is one herb that is best to avoid sun, I think it's this. Just Google whatever Rx, OTC or supplement with "sun" and that may offer some clues for a friend detective who would be so kind as to help you solve this puzzle.

Still, be sure you don't have any new items in your home, new fabrics, clothes, etc.
-

[ 08-07-2015, 04:52 PM: Message edited by: Keebler ]

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
Due to hotter, dryer weather in a lot of places, poison plants are bigger, stronger and their oils on the surface of bench can last for a couple weeks.

It would make sense that other toxic plants might as well, even if they don't get the headlines in these recent articles:

http://flash.lymenet.org/ubb/ultimatebb.php/topic/3/35177

POISON IVY - Reference Links set
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
sammy
Frequent Contributor (5K+ posts)
Member # 13952

Icon 1 posted      Profile for sammy     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thank you all who have responded. I am taking antibiotics again in hopes to prevent relapse. I'm still wary of the steroid shot but it has stopped and even started to reverse the rash and sore progression!

The day before I got the rash, I was outside at my sister's house sitting under cover of her large porch in the shade.

I avoided the sun completely that day as I did not want to chance a sunburn! Previously I had not had a bad reaction to the sun while on numerous combos of antibiotics.

There is a great possibility that I was exposed to some sort of toxin in the air due to my sister's neighbor who illegally burns trash of all sorts on a regular basis (as he does not participate in regular trash removal or recycling!).

I don't know how he gets away with this in the city limits... For some reason the city looks away when it comes to his behavior.

His yard is filled with weeds and trees that are much taller than the house itself. They choke the power lines and even spill over the fence into my sister's yard.

Because of all the weeds and trees that fill the yard, it has formed a neighborhood refuge for animals and a breeding ground for bugs. My sister's yard is therefore always full of biting insects.

My niece is 2.5yrs old and my nephew is only 9months old. It scares me to death that they play in the yard barefooted, in shorts and bathing suites. My sister see's me suffer, has seen my life literally destroyed. Yet she does not take precautions to protect her family.

Sorry, I got off subject a bit.

Besides burning trash next door. The city may have removed weed vines from the power lines in my sisters back yard that lead to her house. There is a large school across the street that may also have sprayed for bugs and weeds. The more I think, the more toxin possibilities there are!

I buy my meds from CVS. Hopefully they are real! My supplements are mainly Zymogen professional brand prescribed by my doctor. I know that quality counts here.

Posts: 5237 | From here | Registered: Nov 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
Does not sound like this is the connection in your case, just good to know that

Counterfeit Rx, OTC, supplements can come from crooks but THROUGH even the best pharmacy, sometimes, so it is just good to check the official photos / description each time we pick up a new Rx or receive a package in the mail.

Clearly sounds most likely that your puzzle got all shaken up by something / everything in this trio of events.

You say "Besides burning trash next door. The city may have removed weed vines from the power lines in my sisters back yard that lead to her house. There is a large school across the street that may also have sprayed for bugs and weeds." (end quote)

To that, I just say "Yikes!"

Glad to see that you are getting some relief. My bet is that, as long as you've got your other bases covered, this will work out. I think you had no other choice but to attend to the emergency treatment for the rash. So, we all just move on as best possible.
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Judie
Frequent Contributor (1K+ posts)
Member # 38323

Icon 1 posted      Profile for Judie     Send New Private Message       Edit/Delete Post   Reply With Quote 
Wow. I'm going through a similar thing.

I learned that the sun can reactivate viruses like HHV6. Saw the dermatologist and a LL-PCP.

Getting a biopsy too and labwork for viruses. The spreading rash made me think Lyme, but the doc didn't think so, thought viruses.

Refused the steroids and am treating with herbs and non-steriod creams.

Good luck!

Posts: 2839 | From California | Registered: Jul 2012  |  IP: Logged | Report this post to a Moderator
Judie
Frequent Contributor (1K+ posts)
Member # 38323

Icon 1 posted      Profile for Judie     Send New Private Message       Edit/Delete Post   Reply With Quote 
I was also told to get more sleep and stay out of the sun.

I'm taking a massive amount of sleep stuff since insomnia is an issue for me. Sleep is helping.

Lastly, I learned that steroids don't completely shut off the immune system, just slows it down. You might be okay!

Posts: 2839 | From California | Registered: Jul 2012  |  IP: Logged | Report this post to a Moderator
lpkayak
Honored Contributor (10K+ posts)
Member # 5230

Icon 1 posted      Profile for lpkayak     Send New Private Message       Edit/Delete Post   Reply With Quote 
I knw the fear of taking steroid shot but even llmd told me if it is life or death(breathing, bleeding etc)you hve to do it

Last april i went to er with chrinic bronchitis brought on by mold exposure while traveling
They gave me high dose iv steroid even tho i said i react bad to them. I didnt refuse tho because it was scarey breathing situation and two meds from.two different docs didnt help

I was basically in bed for 4 wks...then moving realy slow for two weeks

That has h as ppened before the few times i agreed to steroid...but a month in bed is better than stopping breathing i guess

I was referred to environmental doc because of that and she did a bunch of gene testing and one said i shouldnt have steroids

I have been on the mold sites now that i am dx with mold illness. Many there have a lot of complaints about wierd rashes

I had a neighbor that burned like that for 8 yrs. It was crazy. I was way up in the mountains. Beautiful, clean place...air, water, etc. And my neighbor pollutes the land i live on!

I had friends once who experienced ticks faling from the sky 20 miles out in the ocean. And when diseases get wierd i cant help to start to pay attention to some of the conspiracy theorys about the planes spraying us with stuff

I think we have to use the steroid now when it is very serious. I sure hope you feel better soon

Scott the better health guy wrote about lyme and mold. Its pretty crazy and scarey on the mold facebook groups but it does seem thst some ppl have trouble getting over lyme until the treat mold a specific way...then as the mold responds to tx the lyme sx go away also.

If you want any more info on the mold connection to lyme let me know. Not responding to lyme tx , trouble with steroids and rashes are all common when someone has both

Hope you get better quick

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

Posts: 13712 | From new england | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
WPinVA
Frequent Contributor (1K+ posts)
Member # 33581

Icon 1 posted      Profile for WPinVA     Send New Private Message       Edit/Delete Post   Reply With Quote 
I think you made the right call! You weighed the pro's and con's and made a very reasonable decision.

I had to take steroids a few times during Lyme treatment due to allergic reactions, and it turned out fine. This was several years into treatment, as you are, and it really didn't set me back Lyme-wise. The only thing I did notice was a resurgence of dysautonomia but that was something I could deal with.

And... I actually felt pretty good on the steroids as it likely reduced system-wide inflammation.

So, I turn down steroids whenever I don't think they're really needed, but would use them again in an urgent situation or when out of other options... as it sounds like you were.

Posts: 1737 | From Virginia | Registered: Aug 2011  |  IP: Logged | Report this post to a Moderator
susank
Frequent Contributor (1K+ posts)
Member # 22150

Icon 1 posted      Profile for susank     Send New Private Message       Edit/Delete Post   Reply With Quote 
Sammy - so sorry for your latest round of trouble.

Sometimes it is "pick your poison" and I think anyone would have taken the steroid shot from what you described. I would have.

So you are a bit better now?

But don't know what caused the "rash"?

How you are you doing with the IVIG? Problems there as well?

I think of you so often!!!

I, too, am at the breaking point. I have been reading about the Lyme persisters and pulsing Abx.

Have you had a chance to read "the latest" on that? I'm going to post a question on one of the threads - maybe that will bring the topic up for you to see.

FWIW I am going to try pulsing Rocephin - working on a plan.

--------------------
Pos.Bb culture 2012
Labcorp - no bands ever
Igenex - Neg. 4 times
With overall bands:
IGM 18,28,41,66 IND: 23-25,34,39
IGG 41,58 IND: 39
Bart H IGG 40

Posts: 1613 | From Texas | Registered: Aug 2009  |  IP: Logged | Report this post to a Moderator
sammy
Frequent Contributor (5K+ posts)
Member # 13952

Icon 1 posted      Profile for sammy     Send New Private Message       Edit/Delete Post   Reply With Quote 
I'm at my breaking point. The sores are getting worse, new ones have developed, and the rash is spreading instead of healing.

I don't know what to do!

Will talk to my LLMD tomorrow but they are in another state so cannot go to the office for a visit, only phone consult. Will also talk to my dermatologist again. Results are supposed to come I'm from the biopsy tomorrow, Monday.

I'm in a lot of pain, frustraited, confused, worried.

Also, my best friends wedding is in less than a week now (only 5 days). So I must get better for her!

Posts: 5237 | From here | Registered: Nov 2007  |  IP: Logged | Report this post to a Moderator
susank
Frequent Contributor (1K+ posts)
Member # 22150

Icon 1 posted      Profile for susank     Send New Private Message       Edit/Delete Post   Reply With Quote 
Oh, Sammy - so sorry!

Dumb questions - but have you tried things like Benadryl - or a baking soda paste/bath - anything at all like that to help?

I am brainstorming here - desperately wanting to help you.

PS - Could you possibly post pictures???

--------------------
Pos.Bb culture 2012
Labcorp - no bands ever
Igenex - Neg. 4 times
With overall bands:
IGM 18,28,41,66 IND: 23-25,34,39
IGG 41,58 IND: 39
Bart H IGG 40

Posts: 1613 | From Texas | Registered: Aug 2009  |  IP: Logged | Report this post to a Moderator
susank
Frequent Contributor (1K+ posts)
Member # 22150

Icon 1 posted      Profile for susank     Send New Private Message       Edit/Delete Post   Reply With Quote 
Quick search:

Polymorphous light eruption ???
(from sun exposure).

Something else: sun allergy - immune system response - also causing a rash.

Still thinking......

--------------------
Pos.Bb culture 2012
Labcorp - no bands ever
Igenex - Neg. 4 times
With overall bands:
IGM 18,28,41,66 IND: 23-25,34,39
IGG 41,58 IND: 39
Bart H IGG 40

Posts: 1613 | From Texas | Registered: Aug 2009  |  IP: Logged | Report this post to a Moderator
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239

Icon 1 posted      Profile for Dekrator48     Send New Private Message       Edit/Delete Post   Reply With Quote 
Could it be poison ivy, poison oak or poison sumac from the neighbor possibly burning those plants?

Still praying for you, sammy!!!


http://www.cdc.gov/niosh/topics/plants/


An article about healing poison ivy with natural products:

http://www.naturalnews.com/041379_poison_ivy_skin_rashes_natural_remedies.html

--------------------
The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.

"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11

Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
quote:
Originally posted by Dekrator48:
Could it be poison ivy, poison oak or poison sumac from the neighbor possibly burning those plants?

Still praying for you, sammy!!!



-
I had the same thought!

I hope they are checking you for Mast Cell Activation Disorder also... or Mastocytosis.

Which abx were you on?

Love, prayers and hugs for you!

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 94761 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
TF
Frequent Contributor (5K+ posts)
Member # 14183

Icon 1 posted      Profile for TF     Send New Private Message       Edit/Delete Post   Reply With Quote 
Hopefully you will get the biopsy results today and then your good dermatologist will know how to proceed.

Let us know. Praying for you.

Posts: 9931 | From Maryland | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
poppy
Frequent Contributor (1K+ posts)
Member # 5355

Icon 1 posted      Profile for poppy     Send New Private Message       Edit/Delete Post   Reply With Quote 
I definitely don't know what caused the rash, but just want to testify that burning poisonous plants can put it into the air and cause symptoms in people in the vicinity. Burning poison ivy is NOT a good idea.

It also seems to me that an immune dysfunction can result in all sorts of things that a normal system prevents.

One more comment: when I was on doxy, I had to wear long sleeves, gloves when driving, and a hat even in the shade. And still I got a sunburned nose!

Posts: 2888 | From USA | Registered: Mar 2004  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
As poppy reminds, smoke can carry the poison of such plants and cause severe issues.

The area where you were - the surfaces - could be swabbed and then examined by a lab, should be, I think, to help determine what kind of stuff is settling.

What about clothes you wore that day? Might they have not been laundered so could be examined or a bag, shoes that were with you?

It's not likely to show on a biopsy as they won't look for those kinds of things - and if you showered it could wash off. Go back to the source, the location, the surfaces - and put that under a microscope. Could solve part of the what, how, why puzzles . . . then make easier the "what NOW?" part.

The school across the street that sprays, someone could ask for you a list of those ingredients.

And the power company who cut weeds off the lines, find out how recently and what kinds of weeds. Maybe a friend would like to be your detective.
-

[ 08-10-2015, 02:11 PM: Message edited by: Keebler ]

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
http://flash.lymenet.org/ubb/ultimatebb.php/topic/3/35177

POISON IVY - Reference Links set

Much stronger this year, all such poison plants are and oil can last for a couple weeks on a surface.

Some homeopathic remedies & topical ointments are suggested here, too.
-

[ 08-10-2015, 02:12 PM: Message edited by: Keebler ]

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
lpkayak
Honored Contributor (10K+ posts)
Member # 5230

Icon 1 posted      Profile for lpkayak     Send New Private Message       Edit/Delete Post   Reply With Quote 
My understanding is burning those plants is very bad and can cause problems inside body as well. I cant believe a derm would not be on top of tgat tho

Im dealing with mold illness now and have minimal skin issues but many on mold sites. This is horrible sx. I can try to find links to pics of mold rashes/sores if you want.

And then there is morgellons. Let me know if you want help with research on mold or morgellons. Have derm rule out poison ivy

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

Posts: 13712 | From new england | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
lpkayak
Honored Contributor (10K+ posts)
Member # 5230

Icon 1 posted      Profile for lpkayak     Send New Private Message       Edit/Delete Post   Reply With Quote 
My understanding is burning those plants is very bad and can cause problems inside body as well. I cant believe a derm would not be on top of tgat tho

Im dealing with mold illness now and have minimal skin issues but many on mold sites. This is horrible sx. I can try to find links to pics of mold rashes/sores if you want.

And then there is morgellons. Let me know if you want help with research on mold or morgellons. Have derm rule out poison ivy

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

Posts: 13712 | From new england | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
randibear
Honored Contributor (10K+ posts)
Member # 11290

Icon 1 posted      Profile for randibear     Send New Private Message       Edit/Delete Post   Reply With Quote 
may sound totally stupid but my bil got shingles. I swear his symptoms sound exactly like yours. ju a thought.

his was so bad he was in the hospital.

--------------------
do not look back when the only course is forward

Posts: 12262 | From texas | Registered: Mar 2007  |  IP: Logged | Report this post to a Moderator
lpkayak
Honored Contributor (10K+ posts)
Member # 5230

Icon 1 posted      Profile for lpkayak     Send New Private Message       Edit/Delete Post   Reply With Quote 
I hope she checks in. Shingles is a possibility but again something a derm could easily dx. Randi...im pretty sure shingles is always on one side of body so if her sores are on both sides it would have ruled it out

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

Posts: 13712 | From new england | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
TF
Frequent Contributor (5K+ posts)
Member # 14183

Icon 1 posted      Profile for TF     Send New Private Message       Edit/Delete Post   Reply With Quote 
The rash and sores are all over her hands, arms, legs, and feet. So, that rules out shingles.

Shingles will be a rash and blisters following a nerve.

Posts: 9931 | From Maryland | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
susank
Frequent Contributor (1K+ posts)
Member # 22150

Icon 1 posted      Profile for susank     Send New Private Message       Edit/Delete Post   Reply With Quote 
I just got off the phone with Sammy.
Sounds like things much the same.
She will try to post here Wednesday morning.

--------------------
Pos.Bb culture 2012
Labcorp - no bands ever
Igenex - Neg. 4 times
With overall bands:
IGM 18,28,41,66 IND: 23-25,34,39
IGG 41,58 IND: 39
Bart H IGG 40

Posts: 1613 | From Texas | Registered: Aug 2009  |  IP: Logged | Report this post to a Moderator
randibear
Honored Contributor (10K+ posts)
Member # 11290

Icon 1 posted      Profile for randibear     Send New Private Message       Edit/Delete Post   Reply With Quote 
another thought. I had a friend who was close by while some guys burned brush. well it was poison ivy. she got it in her lungs. she was very ill for a long time and has breathing problems today.

shingle can cover the entire body. I'm betting she breathed something in tho.

my bil shingles covered his entire back, arms and legs.

--------------------
do not look back when the only course is forward

Posts: 12262 | From texas | Registered: Mar 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
susan, thanks for letting us know that you spoke with sammy. Sure hope she sees some relief soon.
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
sammy
Frequent Contributor (5K+ posts)
Member # 13952

Icon 1 posted      Profile for sammy     Send New Private Message       Edit/Delete Post   Reply With Quote 
I'm sorry it's taken me so long to update. These past 2 days have been crazy.

I saw my dermatologist for a follow-up yesterday. My biopsy results came back as most "consistent with photo toxic dermatitis". "A collagen vascular disease is possible but not as likely".

My doctor said that the rash was most likely caused by a immune reaction to a drug that was triggered by sun light. That my skin is actually being attacked and killed by my immune system.

The only way to stop the reaction is to stop the drug that triggered it. Problem is, We are not really sure what caused the reaction.

It could be any of my meds, old and new. I changed antibiotics approx 6 weeks ago so that is what we are going to suspect first.

I had already spoken with my LLMD and stopped my previous Lyme meds. I'm taking Ceftin temporarily until I talk with them again and they prescribe a whole new protocol.


If my rash and sores continue to get worse instead of better, then my doctor will have to reevaluate and do a full work up for Lupus.

Hopefully things will start to improve soon!

Thank you all for your support and encouragement here. I appreciate you caring. This has been an extroidinarily hard time for me.

Posts: 5237 | From here | Registered: Nov 2007  |  IP: Logged | Report this post to a Moderator
sammy
Frequent Contributor (5K+ posts)
Member # 13952

Icon 1 posted      Profile for sammy     Send New Private Message       Edit/Delete Post   Reply With Quote 
I need to go to bed but one more thought...

I've noticed that the rash on my right upper arm has formed the look of a perfect bull's eye rash. I don't know what to think of this.

I saw it clearly yesterday and it got stronger today after my shower.

(I did take pictures of it but they are on my phone and I have no idea of how to go about posting some.

So, what do you think?

Posts: 5237 | From here | Registered: Nov 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
The new bulls eye is not a surprise. Those with lyme can often get bulls eye rashes.

I had a "rash" of satellite bulls eye rashes - between 8 and 13 of them, three different times while I was trying to tolerate doxycycline after going quite a while with it being fine. All of the sudden, not fine. Never again for me. The were unbearable.

Your LLMD will know more about that and what to make of it.
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
I'm confused.

On Aug. 7, you wrote: ". . . developed a strange rash after sitting outside in the shade one afternoon 14 days ago."

Yesterday you wrote: " . . . My biopsy results came back as most "consistent with photo toxic dermatitis"."

Well, how could be if you were in the shade? Unless you had a lot of bounced sun (which can surprise us) or got day light on your skin otherwise?

Also consider any supplements you may be taking. Some do not mix well with sunlight, either. If you were not around water or large windows to bounce sun into your shade, though, this has me puzzled.

Of course, even without sun, any drug (or herb) that worked well for us before can all of the sudden turn on us.
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Judie
Frequent Contributor (1K+ posts)
Member # 38323

Icon 1 posted      Profile for Judie     Send New Private Message       Edit/Delete Post   Reply With Quote 
Even a tiny bit of sun can start a photo-toxic reaction. Just riding in a car can do it or a minute in the sun.

It's a chemical, chain-reaction that starts because the drug is in your skin.

Been there, had that. It was a nightmare, took over 2 months to clear, just spread everywhere!

Used tons of herbs and fresh aloe vera to help the healing.

Good luck!

Posts: 2839 | From California | Registered: Jul 2012  |  IP: Logged | Report this post to a Moderator
Sammi
Frequent Contributor (1K+ posts)
Member # 110

Icon 1 posted      Profile for Sammi     Send New Private Message       Edit/Delete Post   Reply With Quote 
QUOTE]Originally posted by sammy:
[QB] I've noticed that the rash on my right upper arm has formed the look of a perfect bull's eye rash. I don't know what to think of this.

sammy, I am so sorry for all you are going through. Do you think you could have been bitten again?

Were you taking a "cycline" antibiotic? I had horrible skin reactions with Doxy and could not be outside at all when taking it.

I hope things improve for you soon.

Posts: 4678 | Registered: Oct 2000  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
Thanks for that explanation, Judie.
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Judie
Frequent Contributor (1K+ posts)
Member # 38323

Icon 1 posted      Profile for Judie     Send New Private Message       Edit/Delete Post   Reply With Quote 
Here's a thread I started awhile back when I had a phototoxic reaction:

Bad Photosensitivity and Drug List

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/125986?#000000

By the way, my biopsy came back as dermatitis and my HHV6 levels were elevated.

I'm listening to the doc who said no sun and more sleep since he suspected HHV6 and that were the problems making my skin go crazy.

Posts: 2839 | From California | Registered: Jul 2012  |  IP: Logged | Report this post to a Moderator
momindeep
Frequent Contributor (1K+ posts)
Member # 7618

Icon 1 posted      Profile for momindeep     Send New Private Message       Edit/Delete Post   Reply With Quote 
There is a weed that looks like Queen Ann's lace but is a dull yellow color...like mustard color that grows in my area that causes a reaction like you are describing...can take a year to get over. I wish I could remember the name of it!
Posts: 1511 | From Glenwood City WI | Registered: Jul 2005  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
quote:
Originally posted by momindeep:
There is a weed that looks like Queen Ann's lace but is a dull yellow color...like mustard color that grows in my area that causes a reaction like you are describing...can take a year to get over. I wish I could remember the name of it! [/QB]

-
Oh shoot! I just read about that one a few weeks ago!! Can't remember either!

I would say the photo toxic is the answer since it was already suspected and the biopsy confirmed it.

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 94761 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
lpkayak
Honored Contributor (10K+ posts)
Member # 5230

Icon 1 posted      Profile for lpkayak     Send New Private Message       Edit/Delete Post   Reply With Quote 
Not goldenrod right?

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

Posts: 13712 | From new england | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
lpkayak
Honored Contributor (10K+ posts)
Member # 5230

Icon 1 posted      Profile for lpkayak     Send New Private Message       Edit/Delete Post   Reply With Quote 
Still thinking of you sammy. Hang in

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

Posts: 13712 | From new england | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091

Icon 1 posted      Profile for Rumigirl     Send New Private Message       Edit/Delete Post   Reply With Quote 
Oh, Sammy, I hope you get some relief soon! Sounds like you need to notify your LLMD or NP anyway. Truly awful. There are so many possibilities here, and there may be several at once.

That is, photosensitivity, caused by a med, or immunosensitivity. Then possibly another blasted tick bite (I pray not so!), or reactivation of previous one as you treat(??).

This is different, but I know once I got a ton of mosquito bites at once on my shins, and had a horrible, hot, red, hard, itchy rash that then spread to the backs of my calves.

Later on in treatment, when I had had no bites, etc., the same exact rash appeared in the same place, apparently reactivated by treatment. I only mention it for the last possible reason.

Are you on Cortef at all? It sounds like you need to be. And you probably need a higher than normal dose while going through this (while on proper abx, of course). Ask your LLMD/NP if they will rx it. They used to (in low doses). Maybe your derm will rx it for you.

Another idea, simply for relief, you can sit in a tub of water with a lot of Aveeno oatmeal bath (or maybe just oatmeal in the tub?). This is good for a lot of painful or itchy rashes.

Posts: 3669 | From around | Registered: Mar 2008  |  IP: Logged | Report this post to a Moderator
Laura Jean
Member
Member # 44625

Icon 1 posted      Profile for Laura Jean     Send New Private Message       Edit/Delete Post   Reply With Quote 
Sammy - just read through this and will keep you in my thoughts and prayers. I'm so sorry!

Could you have been bitten again? Otherwise, how would you get a perfectly clear bulls-eye rash? I'm sure that I've been infected more than twice, and the reaction seems to get worse each time I've gotten a new bite.

I hope it's getting better.

Posts: 35 | From North Texas | Registered: Sep 2014  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
Resembling Queen Anne's Lace (but larger), this is likely the toxic weed referenced in a few posts above as being in recent news, very important detail:

http://www.cbsnews.com/pictures/giant-hogweed-8-facts-you-must-know-about-the-toxic-plant/

GIANT HOGWEED - Toxic Weed

A good web search for other recent articles, videos, information sites would be a good move to learn more not covered in this one link.

Smoke from the burning of this, or just the dust / debris from fiddling with it could travel to neighbors, through neighborhoods, onto cars, etc.
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
State University Extension offices may be good to contact regarding whatever toxic weeds may be in one's region. Botany instructors / teachers in one's educational systems, too.

If there might be a Botanical Society, they would also be excellent. Audubon Society or Sierra Club local chapters may be good to find out about any of those, by whatever names.
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
TF
Frequent Contributor (5K+ posts)
Member # 14183

Icon 1 posted      Profile for TF     Send New Private Message       Edit/Delete Post   Reply With Quote 
Is Sammy in one of the states where giant hogweed grows?

"the toxic plant grows in New York, Pennsylvania, Ohio, Maryland, Oregon, Washington, Michigan, Virginia, Vermont, New Hampshire and Maine."

Or, has she seen it or come in contact with it?

Does her rash/burn look like the pictures?

What this plant can do is really horrible! frightening!

Posts: 9931 | From Maryland | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
LSG Scott
LymeNet Contributor
Member # 21624

Icon 1 posted      Profile for LSG Scott     Send New Private Message       Edit/Delete Post   Reply With Quote 
crank up the vitamin d3 for a few days to help that immune system

--------------------
LSG Scott

Posts: 487 | From Boston, Cape Cod, Mass | Registered: Aug 2009  |  IP: Logged | Report this post to a Moderator
lpkayak
Honored Contributor (10K+ posts)
Member # 5230

Icon 1 posted      Profile for lpkayak     Send New Private Message       Edit/Delete Post   Reply With Quote 
Hope your ok sammy. That giant hogweed looks awful. Well actually it looks pretty which is scary considering what it can do. And its in a lot of places i lived and i never heard about it.

Please take care of yourself sammy and let us knows how its going when you can

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

Posts: 13712 | From new england | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
lpkayak
Honored Contributor (10K+ posts)
Member # 5230

Icon 1 posted      Profile for lpkayak     Send New Private Message       Edit/Delete Post   Reply With Quote 
I googled giant hogweed cuz i couldnt open link above. Theres a lot there. I cant seem to copy and paste. Sorry

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

Posts: 13712 | From new england | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
lpkayak
Honored Contributor (10K+ posts)
Member # 5230

Icon 1 posted      Profile for lpkayak     Send New Private Message       Edit/Delete Post   Reply With Quote 
Anyone in touch with sammy? Wondering how shes doing...

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

Posts: 13712 | From new england | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
susank
Frequent Contributor (1K+ posts)
Member # 22150

Icon 1 posted      Profile for susank     Send New Private Message       Edit/Delete Post   Reply With Quote 
If she does not post in the next couple of days I will try to call her.

Sammy - hope you are doing better!!!???

--------------------
Pos.Bb culture 2012
Labcorp - no bands ever
Igenex - Neg. 4 times
With overall bands:
IGM 18,28,41,66 IND: 23-25,34,39
IGG 41,58 IND: 39
Bart H IGG 40

Posts: 1613 | From Texas | Registered: Aug 2009  |  IP: Logged | Report this post to a Moderator
Sammi
Frequent Contributor (1K+ posts)
Member # 110

Icon 1 posted      Profile for Sammi     Send New Private Message       Edit/Delete Post   Reply With Quote 
sammy, please do let us know how you are doing.
Posts: 4678 | Registered: Oct 2000  |  IP: Logged | Report this post to a Moderator
sammy
Frequent Contributor (5K+ posts)
Member # 13952

Icon 1 posted      Profile for sammy     Send New Private Message       Edit/Delete Post   Reply With Quote 
Sorry I haven't posted an update in awhile.

I went out of town to my best friend's wedding for a few days. Had a very good time [Smile]

Unfortunately, my rash has persisted despite my best efforts to hide from the sun. I even have 2 new places that have popped up. One area on my left knee and my left ankle. Also the day before these 2 new spots popped up I had severe swelling all over my body.

The skin hurts at these new sites but the joint underneath also hurts. This concerned me so I contacted my Dermatologist.

She was not pleased to hear that the rash has progressed. She is now strongly doubting the drug induced photo sensitivity diagnosis.

So the doctor ordered a bunch of blood work including tests to rule out lupus. I'll try to get them done this weekend.

Also, that target/ bullseye rash is still prominent on my arm. I'm baffled by that. I sent a pic of it to my LLMD but he must not have been concerned because he hasn't said anything about it yet.

I could use some guidance though.

I've had the rash for over a month now. The day before it started I was just outside. Not in the sun.

Ok, I need to go for now. I'll try to come back later!

sammy

[ 08-20-2015, 07:22 PM: Message edited by: sammy ]

Posts: 5237 | From here | Registered: Nov 2007  |  IP: Logged | Report this post to a Moderator
Sammi
Frequent Contributor (1K+ posts)
Member # 110

Icon 1 posted      Profile for Sammi     Send New Private Message       Edit/Delete Post   Reply With Quote 
sammy, thanks for the update. I am so glad you got away for a few days and had fun!

Do you think you could have been bitten again? I think it is possible. I also think bulls-eye rashes can show up at anytime in people who have Lyme.

The other rashes and swelling are so perplexing. I hope you can figure out what is going on soon.

Posts: 4678 | Registered: Oct 2000  |  IP: Logged | Report this post to a Moderator
susank
Frequent Contributor (1K+ posts)
Member # 22150

Icon 1 posted      Profile for susank     Send New Private Message       Edit/Delete Post   Reply With Quote 
Sammy - wondering if any connection with the IVIG.

New rash areas since most recent infusion?

First rash - what time frame in re: previous infusion?

Perhaps you are "allergic" to the recent batches?

I did a quick google search and do see folks reporting rashes after IVIG.

I developed excema (sp) on my ankles years ago - while on IVIG - it persisted for several weeks until I went to the dermo and was given a stronger topical steroid cream. (Also I was dumb and covered the areas with bandaids which apparently is a no-no).

The rash went away and have not had it again. No idea if it was IVIG related. Just never have had "E" before.

There will be an answer - it just must be found!

--------------------
Pos.Bb culture 2012
Labcorp - no bands ever
Igenex - Neg. 4 times
With overall bands:
IGM 18,28,41,66 IND: 23-25,34,39
IGG 41,58 IND: 39
Bart H IGG 40

Posts: 1613 | From Texas | Registered: Aug 2009  |  IP: Logged | Report this post to a Moderator
Sammi
Frequent Contributor (1K+ posts)
Member # 110

Icon 1 posted      Profile for Sammi     Send New Private Message       Edit/Delete Post   Reply With Quote 
sammy, how are you? I hope things have improved.
Posts: 4678 | Registered: Oct 2000  |  IP: Logged | Report this post to a Moderator
sammy
Frequent Contributor (5K+ posts)
Member # 13952

Icon 1 posted      Profile for sammy     Send New Private Message       Edit/Delete Post   Reply With Quote 
Update: 8/31/15

Susank, good thoughts. I looked on the calendar and my initial rash started exactly 1 week after I had an IVIG infusion. I get IVIG every other week though.

I do wonder if I might have gotten a new tick bite from sitting outside in my sister's yard that day before I got the initial rash.

The rash has had so many phases that I wonder if it was caused by multiple infections. Like the first rash looked like classic RMSF.

After the RMSF, what was on my arms actually looked like multiple EM rashes stacked kinda like chains, hard to explain. Not the neat clean only one circle area with central clearing and bite in the middle.

The one clear EM looking site on my arm has faded some but persists even after a month now.

The second phase of rashes on my ankles looked like RMSF early and late with the petechial phase now. Also it made my ACA patch flare up severely.

I cannot explain the sores on my hands. Maybe they were some early form of ACA? There is not much information available on this. My hands now look like my ankles that have the solid ACA diagnosis so I have no idea...

I've been off antibiotics because my doctors believed that this all may be a drug reaction. My dermatologist is now leaning more towards an infectious cause because of the progression of the rash.

I've been having fevers and more Lyme/co symptoms which makes me believe that it may be of infectious cause.

I feel like I need guidance from my LLMD. I hesitate to contact them though as major issues should be addressed during your next appointment (which is completely understandable, all of our LLMD's are swamped!). I don't like to be a bother.

So that's what's going on with the rash... It is calming down and I am feeling sicker.

Posts: 5237 | From here | Registered: Nov 2007  |  IP: Logged | Report this post to a Moderator
sammy
Frequent Contributor (5K+ posts)
Member # 13952

Icon 1 posted      Profile for sammy     Send New Private Message       Edit/Delete Post   Reply With Quote 
Also, I was tested for Lupus and other autoimmune issues since the rash flared again while off antibiotics and has persisted so long.

Basically the labs came back negative for autoimmune problems but pointed to infections.

Thank you all for reading this and caring!

Posts: 5237 | From here | Registered: Nov 2007  |  IP: Logged | Report this post to a Moderator
susank
Frequent Contributor (1K+ posts)
Member # 22150

Icon 1 posted      Profile for susank     Send New Private Message       Edit/Delete Post   Reply With Quote 
Sammy - glad you posted an update.

Can you take photos and email them to someone who could post them here?

Back to bed.........xoxo

--------------------
Pos.Bb culture 2012
Labcorp - no bands ever
Igenex - Neg. 4 times
With overall bands:
IGM 18,28,41,66 IND: 23-25,34,39
IGG 41,58 IND: 39
Bart H IGG 40

Posts: 1613 | From Texas | Registered: Aug 2009  |  IP: Logged | Report this post to a Moderator
lpkayak
Honored Contributor (10K+ posts)
Member # 5230

Icon 1 posted      Profile for lpkayak     Send New Private Message       Edit/Delete Post   Reply With Quote 
I wish you would read what scott said:
Betterhealthguy.com/topics/mold

Rashes and antibiotic intoletance are strong signs of mold toxin infection. It can be worse if you have history of lyme...depending on your genes. There is accurate testing and a protocol. Many who start protocol for mold have lyme sx go away.

But unexplained skin / rash issues are big mold toxin sx

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

Posts: 13712 | From new england | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
http://www.lymediseaseassociation.org/index.php?option=com_phocagallery&view=category&id=11:rashes&Itemid=331

From The Lyme Disease Association site

Resources - Medical Photos

- Rashes include Lyme, bartonella and other tick-borne diseases (TBD)


http://www.lymedisease.org/lyme101/lyme_disease/lyme_symptoms.html

Lyme Disease; Comprehensive overview covers symptoms, treatment, diagnosis and prevention of this tick-borne illness.

. . . rashes can mimic spider bite, ringworm, or cellulitis. Multiple, so-called “satellite” rashes may appear on different parts of the body. . . .
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
TF
Frequent Contributor (5K+ posts)
Member # 14183

Icon 1 posted      Profile for TF     Send New Private Message       Edit/Delete Post   Reply With Quote 
So, Sammy, are your symptoms from MCAS? I read in another thread that you have been diagnosed with this.
Posts: 9931 | From Maryland | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
sammy
Frequent Contributor (5K+ posts)
Member # 13952

Icon 1 posted      Profile for sammy     Send New Private Message       Edit/Delete Post   Reply With Quote 
No... my Mast Cell Specialist and my main CVID Clinical Immunologist both saw my rashes during my regularly scheduled visits.

They both thought that the rashes looked more "infectious in origin" than the originally suspected drug eruption or photo dermatitis.

My dermatologist has done a thorough work up to rule out drug induced photo dermatitis, Lupus, and any other auto- immune condition that might cause rashes. All the tests have come back negative. She is even more convinced now that it is cause by an infection.

I've not been on antibiotics for a long time now. The last time I spoke with my LLMD was almost a month ago when I received my biopsy results.

At that time I was told to "hold my antibiotics to let the rash clear and wait for further instructions". That they would keep in touch. (Before that, I had already been off of the antibiotics for 3+ weeks.)

I've been having fevers on a regular basis now and I feel horrible. I don't know what else to say about that.

I'm not scheduled to see my LLMD in the office for about another 3.5 weeks. I guess that maybe they are waiting to see how I am doing in person. I don't know...

All I do know is that stopping the antibiotics for about 2 months has not been smart! I've regressed majorly [Frown]

Oh, and the rashes are healing/fading slowly but surely. They are still very visible on all of my extremities though. My left foot, ankle and right hand, arm are the worst remaining stronghold areas. I'm still avoiding the sun completely. Very Weird.

Posts: 5237 | From here | Registered: Nov 2007  |  IP: Logged | Report this post to a Moderator
Sammi
Frequent Contributor (1K+ posts)
Member # 110

Icon 1 posted      Profile for Sammi     Send New Private Message       Edit/Delete Post   Reply With Quote 
sammy, you have through so much. I am glad the rashes are finally improving.

I suggest contacting your Lyme doctor's office. Let them know you are feeling much worse since stopping the meds and see if you can restart them. Then you can update them at your appointment.

Hang in there okay?

Posts: 4678 | Registered: Oct 2000  |  IP: Logged | Report this post to a Moderator
sammy
Frequent Contributor (5K+ posts)
Member # 13952

Icon 1 posted      Profile for sammy     Send New Private Message       Edit/Delete Post   Reply With Quote 
I thought about that.

BUT... I feel so guilty contacting my LLMD in between appointments. I hesitate to do so even if I am in the emergency room and in need of help.

I am afraid to be a burden by creating undue additional work to their already busy, heavy workload.

Admitting this out loud sounds pretty ridiculous. But it is a true fear of mine.

Posts: 5237 | From here | Registered: Nov 2007  |  IP: Logged | Report this post to a Moderator
Sammi
Frequent Contributor (1K+ posts)
Member # 110

Icon 1 posted      Profile for Sammi     Send New Private Message       Edit/Delete Post   Reply With Quote 
There is no reason to feel guilty. They probably would like an update. If you think restarting the antibiotics are going to help, I would definitely call.
Posts: 4678 | Registered: Oct 2000  |  IP: Logged | Report this post to a Moderator
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397

Icon 1 posted      Profile for sparkle7     Send New Private Message       Edit/Delete Post   Reply With Quote 
Sorry about the rash. What have you been putting on it? Does anything help? Some thoughts of something that may help - clay, colloidal silver, colloidal oatmeal, aloe vera, tea tree oil or lavender diluted, coconut oil, sea buckthorn oil, calamine lotion, charcoal poultice, ice...?

Thanks for the info about hogweed. I really like queen anne's lace & it looks very similar. Glad I didn't pick any! I had no idea!

Posts: 7772 | From Northeast, again... | Registered: Oct 2006  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
quote:
Originally posted by TF:
[QB]

"the toxic plant grows in New York, Pennsylvania, Ohio, Maryland, Oregon, Washington, Michigan, Virginia, Vermont, New Hampshire and Maine."


-
More info for those who are interested. It's NOT the same as Queen Anne's Lace.

https://en.wikipedia.org/wiki/Heracleum_mantegazzianum

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 94761 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
Sammy .. I hope you will decide to call your LLMD tomorrow and I hope they will help you!

[group hug]

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 94761 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
   

Quick Reply
Message:

HTML is not enabled.
UBB Code is enabled.

Instant Graemlins
   


Post New Topic  New Poll  Post A Reply Close Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
 - Printer-friendly view of this topic
Hop To:


Contact Us | LymeNet home page | Privacy Statement

Powered by UBB.classic™ 6.7.3


The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:

The Lyme Disease Network of New Jersey
907 Pebble Creek Court, Pennington, NJ 08534 USA


| Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Contact Us

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to Terms and Conditions.