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Does anyone have ANY information on the possibility of Shingles and Lyme together?

Here's my story...I got shingle this past December, was misdiagnosed at the ER because they thought I had strained my back from shoveling. They never asked if I had a rash, fever, etc. I did have the beginnings of the shingles rash but I thought it was an allergic reaction from a new fabric softener I tried and since the itching was where the underwire was on my bra, I didn't think to mention it. I was in too much pain in my upper back. They sent me home with muscle relaxers.

After a week, the rash had gotten worse and the sores burst but I couldn't take the pain anymore so I went to my doc. He took one look and said it was the shingles. Told me it may be too late to do much and said we could only hope that I wouldn't suffer from PHN (post-herpetic neuralgia--which is nerve damage that can last anywhere from one year or for the rest of your life!) but he put me on antibiotics anyway. He gave me only one week's worth of Valtrex and put me on Oxycodone for the pain.

In June, my service dog and I were attacked by a neighborhood dog. One of my injuries was a knee injury and he gave me prednisone. Three weeks later and my knee still bothered me so he gave me steroid shots to my knee.

My knee got better, but I got worse. The pain intensified and then other symptoms suddenly appeared. Exhaustion, increase in anxiety and panic attacks, muscle aches that are beyond the norm, serious brain fog and memory issues.

I just found out this week by researching Lyme that a doctor should almost NEVER give steroids because it could reactivate the Lyme. Over the years I have been bitten by Lyme ticks THREE times and then started to research Lyme symptoms again.

I went to my Pain Management doctor and he agreed that stress along with the steroids could have reactivated my Lyme. I emailed my doctor and explained how sick I was and very nicely informed him of my conversation with my PM doc and how we both felt it was Lyme. I'm not sure if he's trying to cover his ass or not because it said right on my chart that I had Lyme 3 times and maybe he just forgot about the steroids. He ordered a Lyme test and also one for Lupus and arthritis. I asked if he was going to send it to Igenix and also test for the co-infections and his attitude was like, "No, just the basic Lyme test, that's good enough." When I tried to educate him on how unreliable that one test is, it's like he didn't even hear what I said and went on talking about scheduling an appointment.

My questions are....could the shingles (which is also a parasite) have triggered the Lyme? Could it have been the steroids? Or a combination of both?

I've tried to research if there's a connection and found only a mention here and there on the two of them, one possibly triggering the other.

Any help or just a word of support would be greatly appreciated. I thought the shingles were bad enough----which, by the way, since I've now had the pain for almost a year, the chances of the nerve damage healing is slim to none so I'm looking at a lifetime of managing THAT pain.

The problem I'm having with the research is that the treatment for Lyme contradicts the treatment for shingles (meaning it can make it worse), and the treatment for shingles can make the Lyme worse! I'm at a loss here.

Thanks for listening...no one seems to understand the Lymes and how trying it is to just get out of bed and by the time I get dressed, I'm exhausted again and the symptoms get worse as each week passes.

Thanks,

Shantiann
Posted on 11/12/08, 01:11 am

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12 Replies | Most Recent

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kismit

Reply #1 - 11/21/08 2:12am

Hi,
I think we all are willing to turn over every rock to figure this shingle thing out I know I am. Mosquito's can carry the nile virus, What I've heard of lyme disease isn't pleasant but it also sounds like you may have a weakened ammune system also to begin with and under alot of stress dealing with it all which is 2 of the top reasons shingles can reactivate. I use to take steroids for my back problems so that's a good correlation in 98 after a car wreck is when mine began. or it could all be coincidental. Maybe get a 2nd opinion since it sounds like your Dr is dismissing you. sometimes I think they don't really know how it ges started or what the pain is like living with it.

Reply #2 - 11/23/08 12:42am

Hi Kismit,

Thank you soooooo much for not only taking the time to read my saga, but to also send me a reply.

They have me on Neurontin, Lidocaine Patch, and Oxycodone. The patch and Neurontin do nothing. The Oxycodone is the only thing that gives me a few hours of relief here and there. But they make you feel like a criminal for taking it! They put me on this and yet every time I call for a refill they act as if I'm some sort of junkie looking for a fix! If they didn't want me on it, then they shouldn't have put me on it in the first place. Makes no sense. The problem with the Oxy is that I know had to increase the dosage to 6 x's a day and that's barely helping. I know that if you stay on them too long your body gets used to it so then you have to take more to get the same effect----that's how people get hooked. I get that----then they should put me on something else that will work. Recently, every few times I go to pick up my prescription I get called in and asked to pee in a cup!!!!! How insulting is that?

I live in the middle of Maine and according to the doctor, I guess there are a lot of people who "pretend" to still have pain when they don't and then they go out and sell the Oxy. Let me tell you, there is no way in hell I would sell those for several reasons but the main one is that they're the only thing that gives me some relief.

Is it possible that shingles pain can increase? What kind of pain do you experience, if you don't mind explaining it to me? They've got me so exacerbated, I'm not sure if I even HAVE the shingles, OR Lyme!

I'm not sure if my insurance allows a second opinion, I'll have to check that out. Thanks for the reminder. I can't believe that you've been living over 8 years with this kind of pain. How do you do it? Does anything give you relief besides the steroids?

Thanks again,

Shantiann

Reply #3 - 09/16/09 7:37am

Well I am new to shingles, but I will share with you what I have found out. Lyme is definitely a disease that results from a tick bite. I think if you catch it quickly, and get on the antibiotics, you can get rid of it. I had a friend with MS, who got bitten by a tic on the back of her leg, and because of the MS, she had no feeling, and did not know she had been bitten. She got sicker and sicker, and finally her doc did a complete physical and found the infected tic bite. Because of her already compromised immune system, she is now on anti-biotics for life.

I have been told by many people that stress is an activating factor with shingles. I had surgery 5 months ago, which has not healed, and I am also deeply worried about immanent liver failure, because the methotrexate I take for RA is damaging my liver. So I thought I was taking the summer easier than my type A personalty likes, and went to the beach in a desert and got a bad burn. I am allergic to the sun anyway, but this time, all the worry about the other issues, the burn triggered my first shingles attack, which was misdiagnosed for 5 weeks by my family doc, because it was atypical. The Valtrex helped, but it wasn't long enough.

I know I tried everything in the world to stop the itching, and cortisone cream aggravated it much worse. So likely taking prednisone would make it worse, too. Even a neutral base galaxal cream drove it insane.

I sympathize with you for these interactions between diseases and drugs. I have my own drug compendium, to try and avoid interactions and side effects, which has helped manage things a lot better. But this shingles is something else. I have been up all night again, because the pain and itching is so bad. I have bipolar disorder, and this is a danger zone. I am not worried about getting tired, but I realized about 2 hours ago I was cleaning house at 3:30 am, which is NOT good - means I am hypomanic, and I don't take any bipolar drugs, because of the side effects of those drugs. Plus I took pain killers, antihistamines and countless other drugs like Gravol to counteract the nauseu from the Valtrex, and my liver has probably taken a big hit tonight.

I am doing a study of suffering in the Bible. I wish I could do it from the outside, and read books wisely after God restores me in the end, like Job. I just feel so caught in a failing body, and frustrated because I know I need to trust God, but even my d-i-l was so sad for me hobbling around the house in my cast, itching my arm, and cleaning house, it was hard not to develop just a tiny bit of self pity. I thought RA was the worst life could throw at me. No, it was the migraines, the asthma, the physical abuse in 2 marriages, it was empty nest syndrome, endometrosis, crazy bipolar anger. I even rode my bike hard today, and still struggling. Not looking forward to Seasonal Affective Disorder which is already starting with the rapid decrease in light. Sorry to dump all my issues on you, when you are suffering so much yourself. I wonder why? I need to try and remember "The joy of the Lord is my strength" Neh 8:10. The oxycodone did nothing for me. I have never had a disease where I couldn't find some way of moderating the pain and effects. This one just sucks!

Reply #4 - 09/16/09 5:09pm

Hi Angela, Thanks for your reply to my post. Yes, Lyme is caused by a tick bite, but since my last post my new doc has done some serious investigating and yes, Lyme can trigger shingles, MS, Lupus, Fibromyalgia, and multitude of other conditions. So that's where I'm at now. No longer taking the Oxy, they now are not only treating the pain from the PHN from the shingles, but also the pain from the fibro. I tried to new drug Savella but it made me too sick to my stomach ALL the time so I had to stop that. They also tried several other things. The Oxy's were no longer working so they tried a Fentynal patch. That put me in the hospital. Now I'm on morphine pills and just started them yesterday and hoping it will help. The pain has been debilitating lately.

They're also treating the Lyme and since my last doc was an idiot and took me off my meds for my panic and PTSD, I know have an appt for next week to get set up with some new meds to deal with those. They just have to be extremely careful which ones they put me on because of the morphine now. They're hoping that once they get the pain under control my body might actually have a chance to start fighting off the other stuff.

I'm very glad that you have a God that you believe in and that it gives you comfort when times are tough.

My doc also feels that by them giving me steroids for the shingles, that reactivated the Lyme I had. It also doesn't help that this summer I got bit twice more and both were confirmed Lyme ticks by the Maine Vector-borne disease department so now that just added a bunch more spirochetes and who knows what co-infections into my system.

I hope you hang in there and find a combination that will work for all your issues too. I'm glad I'm off the Oxy since they switched me to the Oxy with all the Tylenol in it. It was killing my liver too. That's why they think I had such a horrid reaction to the Fentynal patches....my liver couldn't process the medication.

Bad enough the drama's of dealing with all this and now we all have to worry about the drama of the meds not killing us too! It does indeed feel like a battle against the tide.

Hang in there and be well.

Shantiann

Reply #5 - 09/17/09 12:12am

I think the liver is a big issue. I can't take any pain meds without triggering a migraine. I don't think I process meds well. I try and find drugs that clear through the kidneys, instead, like my Kineret, my RA biologic. Trouble is, the Valtrex goes through there, too, and I gain 5 lbs of water every time I go on it, which indicates that now the kidneys are taking a hit.

My little, shy quiet, scaredy cat slipped outside when I went out to barbecue dinner tonight. It's been 4 hours and it is pitch black and she hasn't returned. She has never been out that long or at night. We had three people looking throughout the neighborhood, calling her and she hasn't returned. The only good thing is, I haven't heard the coyotes across the road yipping when they bring home a kill. I just don't need this added stress.

I sure hope they get this pain and Lyme disease under control. Do you spend a lot of time outside to get bitten so often? In the grass or something? Or is it just common where you live?

Today the weather broke a 120 year record high. That is nice, since summer came so late. I hope I remember this day when it is -40 and 4 feet of snow. Thanks sharing. My itching and pain seems better today, and so does my foot. One week till I find out if my bunion resection has finally fused - Today is my 5 month anniversary of the surgery. I won't get the other foot done - not and waste another year - it isn't quite as bad, anyway.

LoriLyme

Reply #6 - 10/28/09 4:06pm

I have had Lyme for years, lesion on the brain, positive spect scan also diagnised with CFIDS and Fibromyalgia. I have been on numerous meds/antibiotics. I have degeneraative discs and have had hernitions in both cervical and now 2discs going into L4&L5 and both S1 nerveroots. After being in pain for a month , seeing a neurologist etc. not being able to walk I had sciatica down my rt. leg so bad I get the shingles on Both sciatic nerves. The rt. was worse and currently have it now for 3 weeks but had the back mri in early Sept. Now is it the Lyme destroying my immune system I'm still CDC positive even after 2 years of treatment or the Neurologist wondered if the discs slipping into the nerves awoke the Chickenpox virus. Anyway I'm on Famvir for the shingles, Neurontin and Oxycodone for pain, etc. I'm miserable. I want to get approved for I.V. Antibiotics to knock the Lyme disease out, I even had equivicol Bartonella results. On top of that I've had Mitral Valve prolapse and leaking and now my Tricuspid valve is leaking. I also have conduction delays within my heart. I had panic attacks bad ones before any treatment began for the Lyme. They are better. But still carry Valium when I do get them. So They say I may have PHN from the shingles and I am trying ice etc. I haven't been doing much so depressed. I can't imagine this shingle pain lasting so long, so I sympathize with you.

Reply #7 - 10/28/09 6:30pm

I hate to say you should add an anti-depressant to your cocktail, but sometimes it is the only thing that helps, when you can't solve the physical problems. I take only a bit, but it does help me from sinking!

My bunion finally healed after 5 months, but I still have so much nerve pain, and the physio recommended a compression sock, which helps some days, not today, though! I may have to wear this the rest of my life, which really leaves me wondering how I am better off than before my surgery. On the bright side, I was able to buy a pair of boots, which was the first time in 10 years I fit something off the shelf.

My shingles is slowly disappearing. I am still taking 500 to 1000 mg of Valtrex per day, and for some reason the itching always starts in the middle of the night. Usually when I wear something warm and long sleeved. So I will probably spend the winter being cold, keeping my arm cooler. The ice is truly the best option. Usually within an hour, I can go back to sleep.

The only good part of shingles seems to be meeting new people, and learning the limits to what I can bear! LOL. I am a fighter, though, as you seem to be, and I am not going to let any physical condition keep me down long. I am continuing working on my M.Div., playing flute, and even my voice seems to be slowly returning, which is wonderful. I never realized how much I miss singing along with the radio, or sharing a new song with people. Funny the things that are SO important.

Reply #8 - 10/28/09 9:25pm

I just want to say thank you to everyone who's replied...being in this position and alone can get pretty miserable.

Lori, I can sooooooooooooo empathize with you on most of your issues except I don't have the back issues. I can't imagine that on top of everything else too. I too have tried the Gabapentin, Neurontin, Oxy, Savella, and about a hundred more different meds. The pain finally got so bad a few months ago they put me on morphine. I can't say I was pleased about it but it has given me some relief...that, and my doctor prescribed medical marijuana (Maine is one of 13 States that we have a medical marijuana law). I must say, the MJ (marijuana) does get rid of all the nausea created by the other meds and although in almost every case it alleviates pain, for me it's weird. It actually increases the pain for awhile but once the "high" is gone, so is the pain so I actually can function for a few hours a day. More than I have been able to over the past two years, which was nothing, so I'm grateful for that. My new doc also has me on noritryptaline to help with the horrid insomnia, and azythromyacin for the Lymes...had me on Paquinal but the cost of losing my eyesight was far greater than what it did for me, which wasn't much.

I think all of these things that you and I have are related. The big question is, Which came first, the chicken or the egg? Lol's. It seems I may have had lyme for more than 20 years now---undetected of course. But through the years I've been diagnosed with mitral valve prolapse (which last year they said I no longer have---uh??), Hashimoto's disease of the thyroid, a heart murmur, panic disorder, post-traumatic stress disorder, shingles with PHN, and the list goes on. So which triggered what? Did the shingles trigger the Lymes and the PHN? did the dog attack trigger the Fibro which THEN triggered the Lymes? My head swims just trying to figure all this out. And when you try to talk to your doctor's about this stuff they either look at you like you have nine heads or they think your a drug seeker or hypochondriac. There seems to be no winning.

I would love to go on-line and say, "Looking for a hospital, research group, or caring doctor.....Here I am...someone take me and figure out what the hell is going on with me."

I guess the only thing we all can do is to try to share information with each other and support each other as best we can.

I know how much you all have helped me...like I said, I was ready to cash out of here a few months ago because NO ONE should live in constant pain seven days a week, 24-hours a day. At least now, I can breathe a few hours each day and that's just enough right now to get me through. I have no idea how long this will last, but I will take it for what it's worth right now.

Bless you all and may one of us find some answers and if not, one of us finds some relief and passes it along to help the others.

Namaste,
Shantiann

Reply #9 - 10/28/09 10:04pm

Something I do not think I mentioned is that I recently changed on of my RA drugs from methotrexate to Sulfasalazine. I was on Plaquenil when I was first diagnosed and it also did nothing for me.

Anyway, Sulfasalzine doesn't treat RA directly but rather the undiagnosed ulcerative colitis underneath. It was supposed to take 6 weeks to become effective, but after the first pill I knew I felt better because my asthma improved about 100%, the RA nodule in my vocal chord disappeared, and the brain fog also stopped. I feel quite young again.

So I was wondering if you have some underlying disorder like I did and maybe it is similar to what I have. Have you been on antibiotics and/or painkillers alot, previous to recently? I think that might be the root cause of all my illnesses. It is worth checking out, esp. because something got better which wasn't supposed to, like my kidneys were failing and now they are good. Also my liver has dramatically improved.

Something to pursue, perhaps?

LoriLyme