Ok, I was dx with Lyme and possible Bart over 2 years ago after a tick bite. Was on abx therapy
for about 6 months then stopped on my own because I was tired of taking so many meds.
This Spring, I got another bite and found the engorged tick on my belly during the night. I contacted my LLMD and he started me on high
doses of Doxycycline and took it for 3.5 weeks before I started to develop a rash on my arms.
The left arm was worse from driving so I figured I would STOP the Doxy and DID.
That was OVER a WEEK ago and I have STAYED out of the sun. My rash is increasing WORSE and
SPREADING up my arm and down to my fingers! I went to my walk-in clinic and they wouldn't treat me ... said I needed to see the
prescribing doctor of the Doxy! They even made me an appt with him for tomorrow morning.
Problem is that is over an hour's drive for me and I am miserable NOW and SCARED! The NP at
the clinic wasn't sure it was even from the Doxy since it's gotten worse after stopping over a
week ago.
I have calls into my LLMD but so far he has not offered any help! I have even e-mailed links to
pictures of my rash to him and am waiting / hoping to hear something back and SOON! Any ideas / advice, suggestions appreciated!!!
EDIT: LLMD called and is prescribing me with a Medrol Dose Pack to start tonight until I can
get to see him tomorrow morning. This is a STEROID! But he is my LYme doctor... so what
do you all think?
Posted by Lymetoo (Member # 743) on :
Does the rash look like what you posted a few weeks ago?
Moving to Medical Questions for more help.
Posted by canefan17 (Member # 22149) on :
Post it again
What about anti-histamines like benadryl or niacin to flush
Posted by TN Kim (Member # 26729) on :
Well I took my 1st dose of Methyprednisolone Dose Pack tonight! My LLMD prescribed it without
seeing the rash but I have an appt. with him tomorrow morning. Hoping nothing worse happens
between now and then! I will attach pictures of it here if I can!
The rash I posted a few weeks ago was on my breast.
Kim
Posted by TF (Member # 14183) on :
Yes, this is so bad, you pretty much need the prednisone.
I hope that in a few hours you will get some relief.
Did you take all 6 pills at once? That's what I would do.
Glad you are seeing the doc tomorrow. Tell us what he says so we all can learn.
Posted by TN Kim (Member # 26729) on :
Yes, TF, I took all 6 pils at once with my supper! Uugh ... this sucks!!!
I also took a Benadryl capsule ... asked the pharmacist and she said it was "ok" to take with the Pred!
Posted by Keebler (Member # 12673) on :
- While it sure could be some other kind of tick-borne infection . . .
I'm thinking since it's only on your arms and worse on the left arm that it is a doxy sunburn, even through car windows.
The blistering just looks like it was from outwardly directed heat, not from the inside (for some reason).
Were your arms exposed to day light while you have been out of the house or even near windows in your home?
If not, a sheer shirt can still let in the sun's rays. It would have to be a very tight weave to block the sun.
Even after stopping doxy, sun sensitivity can go on for a few weeks. -
Posted by Lymetoo (Member # 743) on :
Glad you'll see the doctor tomorrow!
Posted by Jennybean (Member # 34198) on :
I got a rash similar to this after being off Doxy for over a week. I only took small quantities for less than a month as well. I went tanning for 10 minutes and lo and behold...all body rash. It sucked...im sorry you're experiencing this. I don't care for Doxy at all...this is not "typical" but I have trouble detoxing, so I think that has something to do with it. Hope you feel better!
Posted by TN Kim (Member # 26729) on :
Keebler, I have tried to wear sunblock and hide my arms any time I go outside or even in the car
but they have not been 100% covered at all times. Like I said, I stopped the DOxy over a week ago
but since the rash hasn't ever improved, only worsened, I've still been careful about the sun
but maybe not enough? I did just now discover what I think are more rash bumps on the back of
my neck ... the only place that I definitely have some "sun". *sigh* I guess I need to never
leave the house again! Going to upload pics of my neck ... will post them soon.
Posted by Keebler (Member # 12673) on :
- Could the chemicals in the sunblock have anything to do with this?
Still, it really does sound like sun burn. I've heard of those with terrible burns who didn't really even have direct sun exposure -- and many through car windows, even required gloves to drive.
Sorry. This looks so rough. Hope the prednisone helps. Guard against the "steroid munchies" or overdoing activity as it can give you a false sense of energy.
This should get better soon, but for 3 weeks, I read at one site, you can be sensitive to sun. It may be longer if skin is damage.
--------------------
Drink water to help your skin move out the fluid.
GOTU KOLA, an herb, may be helpful to help the skin heal from the inside out. It's great for micro-circulation and collegen repair.
CALIFLORA CALENDULA GEL (but it's not oily at all) for topical use. I would avoid anything that is oily or chemical based.
Some calendula gels are oily. ONLY this brand is not, that I've found.
. . . Most of the US-approved UV filters release free radicals � octylmethoxycinnamate, oxybenzone, avobenzone, octocrylene, titanium dioxide, zinc oxide, Padimate O, PABA, menthyl anthranilate, and Mexoryl SX . . .
. . . Some sunscreen ingredients or formulations may be more damaging to skin than others.
Both nano-size zinc oxide and titanium dioxide from sunscreens react strongly with UV light (Dunford 1997) and may damage skin cells (Sharma 2009). . . .
. . . Furthermore, the crystal structure of titanium dioxide (anatase vs. rutile) also appears to affect its potency in generating free radicals (Lu 2008).
The UV filter Padimate O causes skin damage through an entirely different mechanism. . . . -
Posted by TN Kim (Member # 26729) on :
I'm getting very stressed and it feels like my left eye is pulling or tight or itchy or something.
Even the left side of my face feels strange now and then .. perhaps I am causing myself to have
a panic attack on top of everything else. Maybe I need to chill a while! Posted by Keebler (Member # 12673) on :
- The steroids can be creating some internal excitement (sure did for me in the past). Steroids can cause full blown anxiety. I hate to say that but it's important to know to understand and then relax enough to not be pulled in that direction.
Instead, try to "harness" that energy and redirect it or envision saving it up to dole out later as you wish (as we all wish it could work that way, eh?)
Breathe, do all you can to create a calm environment. This will likely start improving soon.
Find some funny movie, etc.
If you ever watched "Seinfeld" might you recall an episode where Kramer went up on the roof and covered himself in butter and literally baked like a Turkey? That was so funny. And, fortunately, you are not that toasted.
Take care. Breathe slowly and often. -
Posted by TN Kim (Member # 26729) on :
Thanks, Keebler! Posted by Lymetoo (Member # 743) on :
Oh yeah... those steroids will amp you up like crazy! Hope you can get some sleep tonight! I HATE steroids!
Posted by TN Kim (Member # 26729) on :
Thanks, Lymetoo.
Posted by YinYang (Member # 36358) on :
Hopefully to possibly put your mind at ease...the rash pictures you posted look exactly like doxy sun rashes that I got. Doxy stays in your system for quite a while and any sun that reaches you (even through a window or indirectly) will make the rash worse and worse. It takes a while, but, it should calm down and go away if you can stay out of the sun. That said, I'm only speaking from my experience. Hang in there.
Posted by TN Kim (Member # 26729) on :
Thank you, YinYang! I'm trying to hang on! Posted by TF (Member # 14183) on :
When I went on the Dosepack, I couldn't sleep until nearly the end. That's how much the prednisone jacks me up.
I am tired, but it won't let me rest.
Posted by Rumigirl (Member # 15091) on :
Yeah, doxy rash it seems. As people have said, it stays in your system for 10 days--possibly more. Plus, once you have the rash, it takes a while for it to go away.
Of course, use high SPF full-spectrum sun block if you do go out, even if overcast. And you could use a wide brimmed hat and a light scarf around you neck.
I hope that your dr warned you about the sun sensitivity issue ahead of time! Drs are famous for not warning you about side-effects. But this is a well-known and bad one. Usually people aren't on doxy in the summer for that reason, unless they very much need that particular abx.
Take care!
Posted by TN Kim (Member # 26729) on :
Thank you, Rumigirl! NO, my LLMD did NOT warn me about it but I did see something either on the
bottle or on a forum and tried to be careful but apparently I wasn't careful enough!!!
Posted by TN Kim (Member # 26729) on :
Saw my Lyme doctor and in about 2 seconds while still standing he said that my rash was a typical Doxy rash and he "sees them all the time" and that was it.
Said make an appointment for a follow-up if I want to talk about my recent lab results and that the tick was "negative" for Lyme.
When I asked why then did I have the same symptoms again as after the first bite 2.5 years ago, he simply said,... "Ihave no idea!"
So .... I guess I'm done with the long drives to Franklin to see this Lyme "specialist" ... the ONLY one in TN.
Can we say, "burnout"? Yea, being the only "Lyme Literate" Doctor in TN and having a rash (no pun intended) of new cases of Lyme Disease along with its very vast and puzzling co-infections,
loses its initial attraction after a couple of years I suppose. Much easier to go back to the "easy stuff". *sigh*
Posted by Kudzuslipper (Member # 31915) on :
I just want to pose another possibility, that it has nothing to do with doxy but is in fact a herx from the doxy. I have had rashes for 20 years, I believe it is an allergic reaction to the die off. when I first went on long term abx last year, I got a really intense version of my rash (that look just like yours)
But for me, adding doxy actually clears up the rashes like prednsone never did for me. Doxy works in the skin.
If it's itchy, see if your llmd can prescribe periactin. it is an antihistimine that I have found works much better than benedryl.
Posted by Keebler (Member # 12673) on :
- Not all tick tests are accurate.
Doxy, itself can cause rashes of various kinds. .
But the fact that you had lyme symptoms before even staring the doxy is significant.
So sorry that he did not take more time to help with the rash and what can help now - and that he did NOT warn you about sun exposure.
The pharmacist should have done so, too. -
Posted by TN Kim (Member # 26729) on :
One thing I had failed to mention to my LLMD is that I had been bitten by THREE different ticks within the same two weeks!
The one that was attached and engorged on my belly during the night, is the only one that I thought to KEEP, and therefore had it tested!
The other two were only on me briefly but they did bite (that's how I knew they were there) and I removed them quickly!
Who knows if they released something into my body just with that first bite or what other ticks I got that same week and never found!??
All I know is that 2.5 years ago, I had a very positive IGENEX reult (as is in my signature) and I had the EXACT freaky symptoms this time.
I had a strange and sudden bruise pop up immediately down my finger after breaking a carrot stick in half for my horse.
Then I had the nodule pop up on my wrist, the only other one I have EVER had and exactly as I had the first time I had LYme 2 years ago.
My LLMD saw the nodule and I told him about the bruising and that is when he tested my blood again but because his test came came negative, he has dimissed it!
Of course he is also going by the fact that the tick I sent in to IGENEX came back negative but as I stated above, I failed to mention the other ticks! *sigh*
Thankfully, my rash finally shows some improvement this morning after the second days of Medrol!
Thank you ALL so much for your replies to this thread. I guess at this point, I will see how I feel after completing the Medrol!
However, I still have pains in my hands and feet and muscles twitches that have never stopped from the first infection of 2.5 years ago. I have really just learned to live with them and quit complaining! Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Keebler: - Not all tick tests are accurate.
- I found that out the hard way!
Posted by Rumigirl (Member # 15091) on :
Sorry to say, as you know now, it sounds like you need a new doc. I know only too well how frustrating this is!!
Any Lyme doc who gives doxy in the summer with no warning . . . not good!! And then to dismiss you so easily with not much help . . . . And to rely on tick testing??? Yikes! 3 strikes and you're out!
Find the best doc you can.
Oh, and what I do, because our cases are complex, and it is easy to forget what you need to say/ask in an appt. I spend a day or two writing up all my current symptoms, concerns, meds, supplements, what went on, questions, etc. and have a copy for the doc, and one for me, so as to make the most of the appt. It is indispensable, if you ask me. (Separate list of meds & supps).
What about the wonderful LL NP in DC? I know that may be a looong way from you! Could do phone consults after the first visit.
Posted by TN Kim (Member # 26729) on :
I so appreciate all of your help and concerns, I truly do! I would have to say that going anywhere further than the one hour's drive that I have been making is pretty much a far shot!
Why? Because I don't like to drive the interstates, and I have never flown nor plan to start at nearly 48 years of age. Terrified of heights!
Good excuses? I"m sure they are NOT but that is how it is with me. Who knows, maybe at some point desperation will force me to change. LOL!
Posted by TN Kim (Member # 26729) on :
Thank you all! Just to update ... was put on the Medrol pack to clear up the Doxy rash from Hell!!! Finally all but gone but now I feel TERRIBLE.
Muscle and joint aches, and the most worrysome is weakness in my hips and legs again. (The WORST symptom I had 2 years ago when I was diagnosed through IGENEX for Lyme)
Trying to get a referral from my GP to see a Neurologist. Have no more faith in my LLMD since he rushed me out when looking at my rash ... and
since he didn't know to NOT put me on Doxy in the SUMMER or NOT to put me on a steroid if I've possibly still got Lyme. :'( .
Posted by kidsgotlyme (Member # 23691) on :
Hi Kim. I highly recommend that you get in with someone else out of state. We went to this same doctor that you are talking about for about one year, and now we see someone in Ct.
It is a VERY long drive(18 hours one way) but so worth it.
Posted by TF (Member # 14183) on :
I doubt that seeing a neurologist is going to be a good move. They are as bad as infectious disease docs for lyme patients.
I was sent to one, and he treated me like a mental patient. He didn't believe my positive lyme test from LabCorp. His goal was to declare that I did not have lyme disease.
These docs order spinal taps and brain scans and such. When you get a negative spinal tap (no lyme found in your spinal fluid), they announce that you don't have lyme!
A neurologist will NOT treat you.
Why are you thinking of seeing a neurologist rather than a different lyme doctor?
There is an outstanding lyme doc in D.C. who will do telephone appointments after the first in-person appointment. People who are going to her are really improving, and quickly too.
She comes highly recommended by top names in the lyme world and by state lyme disease associations.
Maybe there is a train to D.C. from somewhere near you.
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Looks and feels like the same thing happening here as well! Guess I will become
