Topic: Scared, regret getting a steroid shot (Update 8/31)
lpkayak
Honored Contributor (10K+ posts)
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posted
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
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lpkayak
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Anyone in touch with sammy? Wondering how shes doing...
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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susank
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posted
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
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Sammi
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posted
sammy, please do let us know how you are doing.
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sammy
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posted
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
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 ]
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Sammi
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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.
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susank
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posted
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
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Sammi
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posted
sammy, how are you? I hope things have improved.
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sammy
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posted
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.
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sammy
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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
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susank
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posted
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
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lpkayak
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posted
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
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Keebler
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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
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TF
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posted
So, Sammy, are your symptoms from MCAS? I read in another thread that you have been diagnosed with this.
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sammy
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posted
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
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.
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Sammi
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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?
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sammy
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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.
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Sammi
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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.
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sparkle7
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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!
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