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Avatar universal

Butt and tailbone pain with Lyme

Does anyone have severe butt and tailbone with sitting?  

I have been dx with Lyme and can't sit for more than 15 minutes or my butt and neuro pain in legs gets worse.  I wake up in the morning with the sensation like warm water running down the back of my legs.  I also have a lot of anxiety because this came out of the blue in Jan. 2010 and three months of Doxy has done nothing so far.  Can't help but think I will never get better or this is something else in my body going on?  My lumbar MRI just showed mild degenerative disc disease - nothing to give me these burning sensations in both of my legs.  
17 Responses
Avatar universal
Welcome to medhelp.

Sorry to hear about your diagnosis and your pain.  The symptoms of Lyme vary (sometimes substantially) from person to person and over time, so no two people have the same symptom set.  I have not had the warm water sensation, but others here do.  

Anxiety is also a symptom of Lyme, because it affects the brain and the endocrine system and it's very common to be anxious, both from being sick and from the illness itself.  Anxiety should lessen as your treatment proceeds, but I don't know how long it takes in different people.  

About the back pain, that is also not uncommon.  I have had lower back pain and stiffness at times, but it doesn't last long, so again, someone else here might be able to advise.

Here's a question for you:  were you tested for other diseases ('co-infections') also carried by the Lyme ticks?  A number of them don't respond to the same drugs as Lyme, and have to be tested for separately.

The CanLyme website has useful information, and you might also find helpful information at these websites:

ilads [dot] org
lymediseaseassociation [dot] org
truthaboutlymedisease [dot] com
lymenet [dot] org
chroniclymedisease [dot] com

ILADS is the main organization for Lyme MDs and has a good bit of information you might find helpful.  Others here may also have some ideas about your back pain.

Best wishes -- check back to see if others post here in response to your message, okay?
Avatar universal
I did the test for Bartonella and CD 57.  Only my CD 57 is back and it is normal.  Always confused, is this the Lyme or is this a back injury (moved a heavy dresser in Jan. 2010 about the same time got the neuro symptoms and then other symptoms came out over the months.  As for the anxiety, I can be fine one day and then totally insane the next (Ie. crying, angry, feeling like I don't want to live like this, etc.  Thanks for your help!
Avatar universal
The anxiety ups and downs are not uncommon.  Happens to many of us.  I look back to when I was really ill and can see the situation very clearly in hindsight, and I'm not the only one here.  Doctors don't seem to fully appreciate that as a symptom of the disease, it seems, but it's real.  And it interferes with being able to cope with and think through dealing with Lyme and with life.  It will get better with treatment.

The trick is to be sure you are being treated for the right things.  That CD57 is normal does not mean everything is okay...which you already know from how you are feeling.  Below is a chunk of text from another website, which I found by searching "cd57 lyme disease".  The links are truncated, but you'll still get the flavor of the conversation, and there is more to be found on the internet.  I would particularly go to ilads [dot] org, under the tab 'About Lyme' and read Burrascano.  You can search his 'Diagnostic Hints ...'  for the terms you want.

What is known is that the tests are not that great, and that Lyme is a slippery creature, so that it sometimes takes a little wandering around to get the right diagnosis and the right treatment combination.

My own CD57 was in the lower side of the normal range, but not at the bottom as one might expect, and I was extremely ill for a long time.

Did you MD discuss with you the decision to test for other possible coinfections?  You have not said whether your MD is an ILADS fan, but I would guess s/he is, or you wouldn't have had a CD57 test run.  Part of why I was so very ill was that I had Babesiosis, like malaria.  That got treated first, and made a big difference.  Then I got Ehrlichiosis from another tick bite, and that its own set of miseries.  (It's always something.)  And everyone reacts differently to the different infections.

And what DOES your MD say?  What is the game plan?  

You hang there.  I certainly remember feeling the way you describe.  
----------------------------------------beginning pasted material here-------------------------------------------
Below is information regarding the CD57. It may be a good indicator of having Lyme and possibly tracking progress, but keep in mind it is being found to be a bit unpredictable, more & more LLMD's aren't putting as much faith in the test as they use to and it should NOT be relied upon fully for diagnosis of Lyme and/or progress. Your symptoms tell the story and should always be considered first!

A low CD-57 can be related to all Tick Borne Diseases, Lyme, co-infections and possibly even viral co-infections - Dr. S (inventor) explained the different possibilities directly to me at an office visit I had w/him 5/08

Dr. Stricker and Edward Winger were in involved in the discovery of the CD57 blood test and its relation to Lyme Disease. It is often called the "Stricker CD57 or Stricker panel".

The test (recommended by most LLMD's) must be done at Labcorp and may be covered by insurance. (If your insurance doesn't cover the test, the cost is around $100-$150) LabCorp test code is 505026

In Dr. Burrascano's Treatment guidelines (I highly recommend that all Lyme patients print this 34 page manual): http://www.ilads.org/lyme_disease/B_gui ... _17_08.pdf on page 8 it explains the CD57 as follows.

"Our ability to measure CD-57 represents a breakthrough in LB diagnosis and treatment. Chronic LB infections are known to suppress the immune system and decrease the quantity of the CD-57 subset of natural killer cells. As in HIV infection, where abnormally low T-cell counts are routinely used as a marker of how active that infection is, in LB we can use the degree of decrease of the CD-57 count to indicate how active the Lyme infection is and whether, after treatment ends, a relapse is likely to occur. It can even be used as a simple inexpensive screening test, because at this point we believe that only Borrelia (Lyme bacteria) will depress the CD-57. Thus a sick patient with a high CD-57 is probably ill with something other than Lyme, such as co-infections.

When the test is run by Labcorp (preferred lab) we want our Lyme patients to test above 60; a normal count is above 200. There generally is some degree of fluctuation of this count over time and the number does not progressively increase as treatment proceeds. Instead it will remain low until the LB infection is controlled and then it will jump. If the CD-57 count is not in the normal range when a course of antibiotics is ended, then a relapse will almost certainly occur."

The CD-57 can be ordered by your doctor through Labcorp using the following info: 505026 HNK1 (CD57)Panel

The range of normal on this test is 60-360. Testing low on this test or below 60 indicates very likely active Lyme Disease. As a Lyme patient we "shoot" for 200 before stopping antibiotics (and of course remission of all symptoms for 4 full months) meaning our subset of natural killer cells (part of our immune system related to Lyme) are strong and healthy and fighting.

A CD57 can be used as a screening test, but only "works" only if it is low. If a CD57 comes back within normal range, it does no rule out Lyme Disease and co-infections. If symptomatic it is always wise to follow up this test with Igenex testing and then still base treatment on symptoms since no test is 100% reliable.

For an excellent explanation of the CD-57 read page 8 of the August 2006 issue of Public Health Alert for "All you wanted to know about the CD-57" : http://www.publichealthalert.org/Articl ... anted.html

AND http://heallyme.wordpress.com/2009/01/2 ... d-57-test/

Description: http://www.anapsid.org/lyme/strickerpanel.html

Written by Dr. Stricker's nurse, Ginger Savely regarding two important tests C4A and C3A:
http://www.publichealthalert.org/Articl ... %20C4a.htm

Longterm decrease in the CD57 lymphocyte subset in a patient with chronic Lyme disease.
Stricker RB, Burrascano J, Winger E.
California Pacific Medical Center, 450 Sutter Street, Suite 1504, San Francisco, CA 94108, USA. ***@****

Lyme disease is a tick borne illness caused by the spirochete Borrelia burgdorferi. In a previous report we described a decrease in the CD57 lymphocyte subset in patients with chronic Lyme disease. We have now identified a patient with chronic relapsing and remitting symptoms of Lyme disease who had decreased levels of CD57 lymphocytes over 10 years. This observation represents the longest duration of an immunologic abnormality ever documented in chronic Lyme disease. The CD57 lymphocyte subset appears to be a useful marker of long term infection with the Lyme disease spirochete.

PMID: 12088407 [PubMed - indexed for MEDLINE] http://www.ncbi.nlm.nih.gov/pubmed/1208 ... d_RVDocSum

---the above text copied from truthaboutlymedisease [dot] com  ---  with thanks to them!
Avatar universal
Thanks for the info.  I testes 98 on CD 57.  My MD is not a Lyme Dr.  No such thing in Alberta - "Doesn't exist here" even though I have travelled a lot and remember a tick bite in another province.  Anyways a naturopath Dr. told me to have the test done.  I just wish I could see some improvement because I am dragging my heels everyday trying to work (part-time) and I don't know how much longer I can keep it up but don't want to lose my job because I can get more hrs. when I am well.  In six years never had a problem until Jan. when statted to have so much pain.  I would cry as soon as I got in the car and call my mom/hubby.

My MD is not sure of this Lyme diagnosis (done through Igenex) so I doubt he would write me off work.  Did you get better just taking the Doxy?  200 mg a day?  Thanks for any imput.
Avatar universal
I have not taken doxy; my LLMD (Lyme doc) prescribed other meds.

Ticks have several failings, and one of them is not being able to read maps.  Therefore this statement that 'we don't have Lyme here' is simply foolish, and I do not know why MDs cling to it, but they certainly do, as you know.

It is possible that you do not have Lyme, didn't have Lyme, or have been cured of Lyme, but something is clearly wrong from your description, and that you remember a tick bite is plenty suspicious.

You really must get a full work up by either your current MD or find an MD who will.  Sometimes friendly docs will venture down the path with encouragement, but only you will know after trying and trying with your doc whether he will or not.  You might send him/her a link to Burrascano's Diagnostic Hints on the ILADS [dot] org website, or put in on a CD and mail it to your doc to read.  It's pretty long to print out, but you can do that too.  Docs often feel better if they see the kind of materials on the ILADS [dot] org website ... then they know it is not just a lot of fluff off the internet.

I would also suggest you search on line "LLMD Edmonton" or "LLMD Alberta" and go through the hits there to see what you might find as clues to a local doc who is up to speed on Lyme and coinfections.

Without ruling out the coinfections, you don't know what you are trying to treat, and doxy may not be the right drug.  Your CD57 looks quite respectable, but mine was pretty good too -- and remember, I'm not medically trained, so you can't rely on me.  CD57 is an indicator, not a flat-out absolute conclusion.  If you can get your friendly doc to read up a bit and order some more tests, that might be the way to go.

Sorry not to be more helpful, but this is a disease complex that the patients have to take charge of, since the medical community is in disarray.  

Best wishes --
Avatar universal
I am so confused by my symptoms.  On one hand, my lumbar MRI and brain MRI are clear (except for moderate arthritis in back, with no nerve compression, I am 42).  The Lyme test I did with Igenex was positive.  My thyroid, para thyroid, calcuim, potasium, diabetes test all came back negative.  If you were me, would you try to be treating Lyme as the cause of my symptoms or something else?  

This all seemed to come out end of Jan. 2010 after moving a too heavy dresser that I was selling (so dumb should had said "bring your husband"!)  Anyways the night after moving it, noticed tingling in my legs but no back pain.  Over the course of two weeks the pain got progressively worse (in my butt and tailbone) and then went to ER who diagnosed disc problem but neg on MRI.  Then a month later (sorry to repeat myself) started to get bad neck stiffness, left elbow pain, severe fatigue, for two days couldn't use my left hand in Apr., got depression and anxiety like I have never seen in myself right away (but could be from the pain and realizing I can't do a quarter of what I used to do).

I have reduced my hours at work to 2.5 days a week (and struggling).  I am afraid if I complain to my GP about all of this after he has given me abx, he will stop giving them to me and conclude I am going bonkers.  Thanks for any advise......Let me know if I can be of any help to you!  There are no LLMD in Alberta, I checked with CanLyme.  There in one in Nova Scotia but a ticket there would be the same as going to Europe.  
Avatar universal
I just searched "edmonton alberta lyme disease" and came up with a bunch of hits that will give you leads of places and people to call.  Even here in the States, Lyme docs (LLMDs for short) don't generally advertise what they practice, so you have to snoop around to find a friendly and knowledgable doc.  

That you got a positive Igenex tells is significant, as far as I know (and I'm not medically trained.)  That alone would make me go find a Lyme doc, and be sure to keep your own copies of all test results, good bad or indifferent.  Often it helps a doc see into the past and figure out the future better.

Sometimes Lyme will flare up after an illness or an injury.  So if you hurt your back, it may be that the nerves were already inflamed from Lyme and you just pushed them over the edge.  I get strange aches and pains that I can't connect to any injury or strain, and it's all Lyme related.  Lyme causes inflammation, and other stresses heighten that, so maybe the dresser move irritated something that till then was tolerable.  Dunno.  But that's been almost a year ago, right?  That sounds like something  more than tweaking your back moving a dresser.  And why would furniture moving make your elbow hurt and give you severe fatigue and pains lasting into April?  And I get cranky when I move houses, but depression and anxiety aren't symptoms of moving furniture, right?

You sound like you are going in circles and don't know what to do.  I can surely understand that.  In your situation, I would find me an LLMD as fast as possible.  I do not know of anything else you can do.  No reason you need to tell your current doc if you think it will upset him for some reason.  He sounds like he's on your side, so stop thinking about the doc and the dresser and find an LLMD, okay?  and you don't have to go to Nova Scotia to find one.

You can do it!
Avatar universal
Thanks, you help clear my mind, I am like a dog chasing it's tail going to physio, chiro, accupunture, massage for my back to no avail.  I get so confused too because I have had several whiplashes in the past so in my mind I rationalize "ok I guess now it's arthritis, etc." which it may be but don't know why so painful all of a sudden this year.  

I am going to a LLND in Vancouver on Fri., (a naturopath perhaps he will know more how to help me.  There is no LLMD in AB or BC that CanLyme is aware of even though there is proof that Lyme is here.  They don't acknowledge Igenex.  

By the way, are you better from your Lyme to a significant degree?  

Avatar universal
I truly understand what you say.  It's how I felt when I was dragging myself from doc to doc, and I did what you have done, which was try to reason my way through the situation, looking for explanations of what may have caused my ailments.  I actually think that is a healthy thing to do:  bringing the mind to the forefront to survey the battlefield and make a plan for going forward, trying to understand what has gone before, to anticipate what to do next.  

People who don't do that are less likely to find the help they need, so it's good that you continue (as an engineer once explained to me) "work the problem."  That means turning it over and over in your mind and studying the situation and gathering data and input to define the problem, structure an action plan, and move ahead.  That you continue to 'work the problem' is a very good thing; otherwise we just become lumps of misery.

I went through 20+ docs in my search for a diagnosis and treatment ... I got very little help from any of them, and it was only a chance remark from one that I had a mildly positive Lyme test that sent me researching Lyme and got me to an LLMD, after over a year of misery.  That kindly doctor who made the chance remark told me I could not possibly actually HAVE Lyme, because, as the doc said gently:  "I have patients with Lyme, and they ... are ... all ... near death."  [Well, if you don't treat it, what do you expect to happen???  Chilling, isn't it.  Why they were dying, I don't know, but clearly they weren't being treated properly!]

And thank you for asking -- I am very much better.  I had Lyme and Babesiosis initially, was cured of the 'babs', was treated a long time for the Lyme but had a bad reaction to the meds so stopped sooner than my LLMD wanted.  THEN I got another tick bite and got (or still had) Lyme *and* got Ehrlichiosis.  I think there are people whose immune systems kill Ehrlichia, or at least suppress it greatly, but my infection lingers after 18 mos now, tho at a lower level.  I will take doxy when I am ready for it, and that should take care of the Ehrlichia.  I am at 70-95% of my old self, depending on the day.  No regrets at all about taking treatment.

And btw, I never saw the first tick or had a bullseye rash; I found the second tick on me, and it wasn't one of those itty bitty Lyme ticks:  it was a big dog tick, the size of a peppercorn, and no rash, but a bunch of other strange symptoms.  Everyone is different, every disease is different, and every infection is different, so finding an openminded doc and continuing to plow ahead is the only course I have found to follow.  It's been about 4 years now, and I will continue to chip away at this.  It is very much worth the effort.  Some docs and patients describe it as 'peeling the layers of an onion', and that is accurate.

I would encourage you to read as much as you can, so that you can help your docs guide your treatment.  I would also ask about what coinfections the LLND thinks you should be tested for, based on your symptoms, because they often need different meds from Lyme.  My LLMD was big on antibiotics, but I now see a doc who believes in abx AND in supplements and herbs, and that is working for me currently.  There is no one-size-fits-all approach, but the first step is figuring out what you have before drawing up a treatment gameplan, and then being ready to modify as indicated.

I'm very glad to hear that you are seeing the doc in Vancouver -- do let us know how it goes.  Best to you --
Avatar universal
and PS, take copies of all your past tests when you see the new doc.  It helps them fill in your history.

And ALWAYS keep a set for yourself at home.  
Avatar universal
I have lymes and when i saw your question it caught my eye..i am a police officer and i was diagnosed with lymes in june of 2012 after going to drs complaining of extreme exhaustion and aches and pains..after a heart attack brought on by the lymes carditis was i finally diagnosed..all local dr's..ie infectious disease docs said lymes wasnt in tennessee...lol what idiots...   i never thought about a previous problem i had about 2010 could have been related to lymes ..i thought it was related to my  tyoe of work but i had SEVERE butt/tailbone pain...it hurt while standing or sitting but it was the worst when i had been sitting and then went to lean forward to get up from sitting...it took a year of threatening docs to do something...my ortho suggested doing surgery and removing the tip of my tailbone to relieve pressure off the nerves...it worked....hope this helps...
Avatar universal
just went to osteopath. i have bursitis .   Ischial bursitis,
called weavers bottom, it affects the sits bone.. my tail bone hurts too, and the glut muscles near the tail bong deep inside.  PT was ordered.  ice massage helps alot.. use an ice cube and rub it in the Butt muscle that hurts. i lay on my side and i can feel the ice cube roll over the inflamed part. there are pix  google immages for Ischial bursitis,  and videos of relief excercises. i see the PT tomorrow. will learn the right movements. most people it goes away if you keep up witht he exercise and ice.. good luck!  
Avatar universal
I have Stage 3, Lyme Disease, chronic neurological,  Although Lymes will manifest in different ways for different people,  I also had the burning in my back hips and tail bone the doctor said it was coming from my performous muscle under your gluteus.  Yes it feels like someone has set your butt on fire.  Your not crazy but I have found that Botox injections into those muscles have helped a lot.  Ask your pain doctor about changing to the Botox instead of steroid injections for the "burning butt".

Hang in there, I wish I could say it gets better.  Feel free to email me directly if you want.  ***@****
Hi would I be able to contact u personally to discuss the same issue that I am having! I just joined this group.
Bartonella causes tailbone pain
Avatar universal
I can relate to the "sensation of warm water running down my legs".  In my case, it is lymph.  It only goes down to the ankles, where it builds up and puts pressure on the underlying veins, cutting off much of the blood flow to my feet.  I can't stay up for long without my toes turning purple and getting cold.  Just got vertical about half hour ago and I can feel the lymph running down now.  I can also feel it coming back up when I lie down.  Either something has damaged the one way valves in the lymphatic ducts of my legs, or something has colonized the ducts plugging them, forcing the lymph to flow on the outside of the legs, under the skin, instead of the through the ducts.
Avatar universal
Anyone with Lyme disease listen up! I had it so bad I found myself walking two feet and felt like I was going to die. My left side of my brain was numb, my hair on my head was so thin it looked like it was burnt. When I found out I had Lyme disease I tried many things but then found out a new method that worked for me and believe me I tried everything. I first noticed a difference when I brought my pH balance from acidic to alkaline. Then bought good teasel root supplement that draws the Lyme out of hiding. I used a suction cup acupuncture cup and filed it half way with hydrogen peroxide placed it on my lower spin L2 - L3 pumped the cup very tight did that for a few weeks one time a day for 5 minutes after applied oregano oil to that area till I didn't feel tingling in my legs or imflamation in my feet. I did get back on my antibiotics and good bacteria and continued the tassel root now the Lyme is under control no pain any where in my body. Not sure what really made it die off this time but I believe your spin is the highway to your brain and lower legs so why not oxidize it. Oh and by the way my memory is as sharp as a needle! Before felt like I was brain dead. Hope this helps out who ever is suffering from this nasty disease!
Very interesting method you used. I support whatever works for each person and glad this was successful for you. I'm struggling and the sx you described in the beginning. ....especially the hair part about it looking burnt--- I'm having this issue currently and it looks like straw! The strangest things see yo crop up with L sx.
Avatar universal
the tail bone pain is associated with the Lyme coinfection known as Bartonella
I was just diagnosed with lymes and in the last day or two have severe tail bone pain. Like almost going to the ER. I’m worried it’s not Lyme related and something else. Just sent labs to igenix and galaxy so don’t know specifics yet for co infections.
redhead, do you have Bartonella?  What's your situation?  

KarenD10, never a bad thing to get checked out.  What did the doctor or ER say?
Avatar universal
Bartonella causes tail bone pain
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