May 292006

MS Red Mark on BackFor a while I have noticed that around the time I have an exacerbation I develop a red mark (rash) along the middle of my back along my spine (mid thoracic). I don’t have pictures from most of these occurrences, and can just barely see it in the mirror, but I think it happens in an almost an identical place, and is an almost identical size and shape. The rash does not hurt, is not warm, and I do not notice it in any way (Eriksgirl lets me know). On some occurrences it gets very dark, almost purple, while other times it is very faint. Yesterday, Eriksgirl noted that it is returning – although it is very light. I guess not a huge surprise since I have had a couple relapses. I guess the questions becomes, is it the Multiple Sclerosis, or is it something else?!

This is an old crummy picture, but it the typical mark on my back. The ruler is in inches – so the mark is about 5 inches (12.7cm) long.

4/10/2012 Update:  Probably a long overdue update to this post.  The comment below was correct about this being a Bartonella rash.  I took that to mean that I had Lyme and proceeded to get testing and treatment for both.  While I am not all better, I still have “silent” lesions on the brain, I am doing much better than I was before.  For now, and for a while now, I have not been doing any treatments.  The argument could be made I quit the Lyme treatments too early.  If you have a similar mark I urge you to not ignore it, and if you have it most likely you also have Lyme.  Good luck!

  42 Responses to “Red Rash Along Spine and Multiple Sclerosis”

  1. The other item to note is that it almost certainly not drug related since I’ve been on over a month long break with the Rebif. Nothing else has changed, and certainly no “trauma” to that part of the body.

  2. Very interesting! Are you wearing a new shirt, using new laundry detergent or sitting in a new chair? Looks like it’s a pressure irritation of some kind. It also looks like it should itch!

  3. Mouse,
    Yeah, I wish – but there has been nothing out of the ordinary during any of the appearances. Well except for a very recent exacerbation.

  4. Erik, I think there is definitely a correlation. Finding the LINK might not be easy but our bodies don’t do anything for no reason.

    Your body is trying to communicate SOMETHING. The trick is learning the language.

    The spine will often send messages like this. My daughter has a colorless but bumpy (teeny pimply) streak down her spine sometimes as well. It seems to correlate with times of stress and ‘bad-for-her’ foods. (We know she has sensitivities to dairy/eggs/wheat). It doesn’t bother her at all…I just notice it when I’m combing her hair after a shower or whatever. It runs JUST to the right of the ridgy part of her spine.
    I believe it is SOME sort of toxin being expressed from the spinal column. Since her ‘bad foods’ often cause ‘hyperactivity’ (neurological) “symptoms” it makes sense to me that one toxic outlet is her spine.

    Don’t discount a drug interaction too quickly. Drugs and their byproducts can sit dormant in bodies for YEARS as can viruses and bacterias (think “shingles” being an old dormant chickenpox virus). Crap can be sitting in your body a lonnnnnnnng time and then get stirred up with stress or who-knows-what.

    I don’t know anything definitively but I certainly vote that the rash is something your body is trying to tell you.

  5. Stacy,
    I agree something isn’t right. It will probably take years to figure out the exact connection. Heck, it took me a while to discover my Rebif/Dairy incompatability.

  6. Other than blogging, do you keep any kind of food & treatment journal? It wouldn’t hurt to write down things like your stress levels, too.

    Just like the MS being a problem with myelin sheath, it wouldn’t surprise me if there was a toxicity of some sort kinda ‘leaking’ through.

    Gosh…(ducking from the “ugh” and “grrr” you & Eriksgirl might send my way) but I just REALLY wish you’d reconsider glycos. Just see if the sugars could make any difference. When doing a search for “myelin sheath glycoproteins” over 3000 articles came up. If the sugars/glyconutrients could increase your production of glycoproteins, wouldn’t it be cool to see if it would improve your situation even in the least little bit????

    I’m just sayin…… 🙂

    I know CFS is different but this has a few interesting points in it

  7. Erik,
    I am so glad you posted this. My husband had the same thing a couple of months ago. His marks look exactly like yours only they were not directly on his spine but still on his back. We thought it was odd but they went away and we did not connect them to the MS, I guess we should think about that again, huh? I think we will start keeping a journal of all the things that go on with him to have a better idea if there are connections. Thanks again for posting about this.

  8. Erik,

    Just out of curiosity…have you checked with your parents to see if you ever had this as a child?

    My son (who is now 11) has a very mild birthmark on his forehead. When he was first born you could see it. It faded after about 3-6 months and now I can only see it when he gets sick or really upset about something. It looks similar to the picture that you posted.
    Just a thought…sometimes we are not aware of birthmarks we may have had over the years.

    Of course it would be something to talk to your neurologist about, but before you stress about it, it may end up being something you have had for years and nothing to worry about. Let’s hope! I hope it turns out to be nothing. Please take care.


  9. Erik,

    Back in 2001-2002 I went through a time period of which I thought I had MS. I was tested, found to have a B12 deficiency at the age of 35. Had all the symptoms someone with MS would have. 3 Months ago my wife noticed this same mark on my spine. We took pictures of it but for the life of me I cannot find them now. When I do I will send them to you if you like for comparison.

  10. Vivian,
    Thanks for posting, it makes me feel like less of a freak! I need to remember to discuss this when I am at the doctor next time.

  11. jaime,
    No, not a birthmark – nor something I had as a child. Weird something that turns up occassionally. The odd thing is that I have been in an exacerbation and it has not shown up – go figure.

  12. Gray Madders,
    Thanks for sharing. It is certainly a weird mark, and I am still uncertain as to the cause. Maybe one of these days I’ll have it figured out?!

  13. Your linear rash looks like a bartonella rash. (Bartonella is a tick-borne disease that is frequently found either alone or as a co-infection with Lyme disease). You never know.

  14. Erik, I just read your post on the rash you get on your spine. I, too, have MS since 1977. The Drs. call it benign MS, which makes me believe they aren’t sure of the diagnosis. Anyway, I too get the rash along my spine. Sometimes it’s there and other times it’s not. I did have one Dr. say that he thought I was allergic to Latex. The elastic from underwear is made with some type of latex. When I take Benedryl, it goes away, but I can’t take that forever, so I live with the rash. It doesn’t itch, it’s just there. I thought too maybe it had something to do with my body trying to tell me something. I also have 2 bulging discs and alot of back problems. MS or not MS.

  15. Anonymous,
    The joys of “MS or not MS.” It has been a while since I have had an occurrence of the red mark – though I have had some exacerbations. I have not made any other changes which makes me think it is not an allergy. Best of luck!

  16. Another good comment about this here, and the comment points to this page/file:

  17. I have now tested positive for Lyme. So the rash is certainly Lyme related:

  18. Hi Erik,

    I just recently noticed a rash very similar to yours. It looks very much like a hickey (i.e. tiny busted blood vessels) but appears linearly-shaped. It’s been there for almost two days now and has not disappeared.


  19. Derrick,
    I assume you have a MS diagnosis. I would recommend looking into Lyme as a possibility: Diagnosing Lyme

    Best of luck!

  20. Your rash looks like what appears on some chronic Lyme patients. I believe it is possibly Bartonella or Ehrlichiosis or some other co-infection along with Lyme. Lyme and it’s co-infections can cause many different chronic rashes not just the bullseye classic rash. PLEASE READ ALL YOU CAN ON LYME AND MS. Do not take anyone’s word for it that you do not have lyme because they really don’t know! My father died in 2000 from long term untreated Lyme disease. He had been diagnosed with MS! My daughter and I have both been CLINICALLY diagnosed with Lyme – both of us had the same symptoms as my dad. I was actually in a wheel chair. The main treatment is antibiotics. There is a HUGE crossover of Lyme and MS. In fact top Lyme experts say that most cases of MS and Fibromyalgia are actually Lyme disease with co-infections. The diagnosis is a clinical one – meaning based on symptoms NOT tests which are extremely unreliable. As of yet there are NO accurate tests to tell if you have Lyme. A good doctor will just put you on antibiotics based on your symptoms and see if you improve. I urge all MS patients to try this treatment. What if you get better???? The places to start for info are an interesting clip is

    I only hope I can help just one person through my own awful experience with this disease! I wish you the best – Karen

  21. Looks like the rash of the lyme coinfection Bartonella. I think there is a pictue on the Canada Lyme web site.

    Doctors gave up and tried to diagnose my son with MS turned out he later tested positive for Lyme Babesiosis, Bartonella (had your rash), and mycoplasma!!

    Treatment got him out of the wheelchair and back to school.

    Go to, people there will help you figure out your next step…they helped me.

  22. This is strange – my son developed scar like marks across his back. He does not have MS, I have MS. he has Aspergers syndrome (autism). They marks look like the Bartonella rash. he has had this for probably 3 years or so. we have not pets (he is nervous of animals) he has had no other symptoms. as it caused him no discomfort I have not taken him to a doctor about it. this has me worried now so will go to doctor about it. Thanks all of you.

  23. From what I hear there seems to be a correlation between Lyme and Autism. And where there is Bartonella there is Lyme. My $.02: I would highly recommend good Lyme testing for your son and you.

  24. Anonymous,

    I hope that you will get yourself checked out as well. Erik was originally diagnosed with MS with his symptoms, and it is possible if your son has Lyme that he caught it congenitally.

    I wish you and your son the best, and I hope you will keep us posted.


  25. I just got a rash just like yours the difference its look like a parenthesis() and my spinal cord right in the middle. i never had this before and its really red. Its 6 inches long and a inch wide each line. The only thing that i can think that im drinking more vitamins omega3, calcium and fiber for the last 2 weeks i dont know if this vitamins are causing me this allergic reaction

  26. OK,
    Have you heard about recent (?) research on link between Multiple Sclerosis and Epstein-Barr virus? Just by accident I found that you can develop a red rash, if you’re using antibiotics to cure glandular fever (which is caused by Epstein-Barr virus). And you have an increesed risk to develop MS if you have Epstein-Barr virus. Epstein-Barr virus is also linked with Toxoplasmosis (and there are some papers about link between MS and toxoplasmosis so somehow everything might be related here). So to sum everything up – Couldn’t it be that the rash was a result of your grandular-fever, which developed before the MS and which could have kick-started your Multiple Sclerosis? And have you ever used ampicillin or amoxicillin before?
    Just a wild-guess here and forgive my bad English.
    I’m writing because I have a rash, just like yours is, and now (about 1-2 years later) I’m slowly developing some neurologycal symptoms, but I have no diagnosis yet.

  27. There may be a treatment for MS. It is called The Liberation Treatment: MS may be caused by a narrowing of veins in the neck. Causing iron buildup in the brain. Please if you know people see the sight
    Maybe it may help some one. I suspect MS societies may not like it but who knows

  28. I have developed a red flushing on my cheeks on my face and down into my neck. I was diagnosed with MS in 2003 and have been on Rebif for 2 years. This is definitely a new symptom (just started today). My walking is getting worse.. Maybe I should take antibiotics for Lyme?

  29. I just stumbled on this page because I can not sleep due to rash on my lower back that is on both sides of my spine in lower thoracic and lumbar area… Never have had this before was diagnosised with MS back in 1995.. I have just been getting over an exerbaction of my MS. I too have been wondering if the rash is in any way connected to the MS as it appeared on my spine… It started out where I could feel the area and it was small bumpy, rough skin, tender and not itchy, then as my symptoms really were showing, lack of balance and spascity of my legs and arms thats when the rash started appearing red or dark red in some area’s of it and it spread to a 6 inches or so on either side of my spinal column. It’s not very pretty right now… It’s tender to the touch as more than once I have reached back because of a sharp tingly feeling kinda like itchy but not and as soon as I scratched I inflicted pain on myself and the rash… I wish I had a way to take a picture of it… I am a widow and live alone… I was diagnosised at age 35 by Roy Swank… I follow his MS Diet and thanks to him, I have done very well all these years… I am now 52 and I feel like I am getting ready to battle MS for the rights to my own body…. I hope someone is still using this page…. Hugs from the Pacific NW

  30. Erik,
    I am only 20 years old and experienced very similar rash along side my spine twice over the last couple years. The first time I noticed it I actually had a back ache and my sister pointed it out to me the pain was not consistent with the rash so the doctor deemed it unrelated and.did not have an answer for the rash the second occurance was not accompanied with any pain and my mother found it while scratching my back she asked if it hurt and it wasn’t raised or itchy I hadn’t changed anything with my diet either so it still became unanswered. I was taking a bath one day when I fell asleep and when I awoke I lifted up my back like auctioned to the tub I remeber thinking the rash looked like a hickey so instead of losing sleep over it I decided I probably did that morevthan once, I’m not so surebthats the casebwhich is why I continue to read these kind of blogs.

    • Hey I’m 21 and I had same thing. I just got it for the first time the other day and it was accompanied with a lot of back pain, esp low back pain around where the rash was. Looked just like that picture and prob 5-6 inches in length and an inch wide. It felt like burny and prickly pain on spine when toughed it and my spine felt bruised. Went to the Dr. and he had no idea what it is. Put me on prednisone and the rash and pain had gone down drastically by the next day. But would like to know why I got it?

      Don’t remember being bitten by a tick any time since I was a child, so don’t know how it could be Lymes.

      • From my experience I never remember a tick bite. I also did not have any pain. It was always my wife noting the rash. It would come back occassionally and it was usually around an exacerbation. We decided to take some pictures so we could ask the Dr., etc. in the future. If you google Bartonella rash my rash matches very well. If yours matches you will need treatment. If you are having other problems there is a very good chance you have Lyme and other coinfections. Good Luck!

  31. Interesting. Did your rash blanch (turn white when touched it). If i pulled the skin tight it would looked white, like nothing there, which was odd. I was given Prednisone yesterday and today the rash has already faded and the pain is almost gone.

    • It has been a while but I spoke with Eriksgirl (the mark was on my back out of my view) and she said the mark was persistent when it was there. Touching it and moving it did not make it go away.

  32. I am trying to find symptoms that could help me find out what is wrong with my 2 yr old daughter. she has had these red spots along her spine that will not go away now she has them on her elbows and knees. she has very little appetite.

    • For what it is worth we have four kids and they can have a rash after a viral infection. Though I think it is more in the front stomach area. They were also tired. I highly recommend you have a doctor perform an assessment.

  33. Hi Eric, did you ever get a positive test for bartonella? I’ve had Lyme disease for three years. I was recently put on levofloxacin and about ten of the exact looking rashes appeared on my mid to lower back, they eventually faded over three weeks. I’ve been tested for bartonella quintana and bartonella henselae but both were not detected. I will try testing again since i got this rash. I know the testing often misses cases because it has poor sensitivity. I’m just trying to figure out if it is really bartonella or some other coinfection. Thanks for sharing.

    • Mine came and went too. Eriksgirl took a picture and that is what you see. I was never tested for the Bartonella and my Lyme treamnet involved treatment for coinfections (picture was plenty adequate to show I had at least one). I am concerned about the person treating your Lyme because coinfections are common with Lyme. Related here are the drugs I took in the course of my treatment

      Good luck!

      • Thanks I’ll take a look. They considered bartonalla when I first came into my LLMD, but I had no symptoms to suggest it and the tests didn’t turn anything positive. I had been on azithromycin and ciprofloxacin before, which also treat bart without any change. They put me on this bartonella regime because I am doing well on abx, but get sick again off. They thought maybe I have it even though I have no symptoms of it and it’s keeping me sick. That’s when the rash showed up, only after treating me with levofloxacin. Hence why I am wondering if it really is bart or it’s it’s something bart-like. The picture of your rash is the only one I can find on the web that looks EXACTLY like mine. The other bartonella pictures on the web are close, but not quite the same. Hence me asking if you knew for sure it was bartonella and not a close cousin.

        I’m also a little harder than your average person to treat because I have hypogammaglobulinemia, a total IgG deficiency. So even if I have co-infections, I have almost no chance of testing positive, even if the tests had good sensitivity.

  34. Hi Erik,
    Was this itchy? I have a similar mark along the back of my neck (centred on the c-spine) and it’s extremely itchy. I’ve had it about 4 months. I also have a severe itch on the top of my head (centre, and, again straight up from the one on the neck). Thirdly, I have one on my lower back – centre spine. All three areas are extremely itchy.
    Was yours at all related to MS? That is something we are looking at now (my brother was recently diagnosed and his first ‘symptom’ was an itchy ear…).

    • Laura,
      In response to your comment my rash was a bartonella rash. You can search Google for more images. That led me to investigate Lyme and my eventual diagnosis with Lyme. I do not recall my rash itching and it was Eriksgirl that brought it to my attention. We noticed that it tended to show up when my “MS” was acting up. We kept track for a while, before learning it was a bartonella rash.

      I know that leads to the next question do I not have MS and was misdiagnosed? That is the million dollar question. 🙂

      I hope that is of some help and good luck,

  35. We are out of the country on vacation. Our 14 year old son has this exact rash. We are out for another week. He’s been eating a ton of shell fish and swimming in the sea. We are going to stop all fish and shell fish until we can return home. I’ve been on the internet all night. This picture looks exactly like what he has.

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