Jordan has had severe back pain for the last 8 weeks. The pain started around the same time that he started IV penicillin (5 million units every 4 hours).
We thought the IV penicillin was causing the pain, so he stopped it for awhile and then went to 3 million units every 4 hours.
The pain was bad again so he stopped the penicillin for 3 weeks. The pain was still bad but seemed to be better some days.
He started back on the IV on 4/30 at 1 million units every 4 hours. The pain is really bad right now.
Jordan said the pain is less when he is sitting down. The pain is increased when he is lying down, standing or walking.
He sees a chiropractor and the pain is reduced for awhile (varies from a couple of hours to a couple of days) after an adjustment.
He went to a pain clinic and had trigger point injections. The injections did help the areas where the injections were given.
He has had an x-ray and MRI of his back. Neither test found any cause for the pain.
I'm sending a fax to his LLMD tonight asking what we should do next.
Anyone have any insights or suggestions for us?
Posted by Foggy (Member # 1584) on :
quote:Originally posted by pab: Jordan has had severe back pain for the last 8 weeks. He went to a pain clinic and had trigger point injections. The injections did help the areas where the injections were given.
He has had an x-ray and MRI of his back.
Pab, do you know what was in the injections? Be VERY careful with those, especially if they have steroids. These pain duck know little about Lyme and love steroids. 1 was too many and it was a DISASTER for me. Erased months of progress.
Talk to your LLMD & PCP about PT and other non-invasive methods like TENS and Vax-D, if appropriate.
H0w are the boys doing in general? Headaches better?
Posted by Aniek (Member # 5374) on :
Can you get him to describe the pain for you? What to do for the pain will depend on what type of pain it is.
I had burning, stabbing pain in my mid-back. It basically felt like somebody was cutting the muscle off my shoulder blade with a burning hot knife. I also get aching pain in my lower back that radiates everywhere.
The only thing that helps is Flexeril. It took weeks for it to work though, because I gradually moved up to a tolerable level. Vicodin also helps reduce the pain.
If it is being caused by trigger points like mine, then any chiropractic work may make it work. In my case, my muscles would inflame crazily to any type of stimulus until the Flexeril.
Posted by char (Member # 8315) on :
Hi PAB,
I hate to hear that Jordan is dealing with this bad back pain on top of what has already been going on.
My daughter had pain in her tailbone area. She found it really hard to ride in car or sit for any length of time. It hurt continually, but felt better laying or standing.
Our LLMD said she had seen this several times with her lyme patients and that she believed that it was inflammation of the iliosacral muscle. The pain med, valtrex did not work out because of side effects. Fortunately the pain eventually went away. Maybe a month or 6wks.
I mention all this as I am wondering if inflammation is the issue. If so, would that give direction on how to treat?
Wish I knew more to help.
Jordan (and Jake) will be in our thoughts.
Char
Posted by Nal (Member # 6801) on :
I assume they have already checked his kidneys, pancrease, liver, gallbladder, etc?? I know that sometimes when any of these organs are having problems, they can cause back pain as well.
If that has all been ruled out, have you tried massage therapy? That may at least relieve the pressure. Sorry he is in agony-thats never any fun!
Nancy
Posted by seibertneurolyme (Member # 6416) on :
It sounds like it could be inflammation to me also. Hubby has recently had some episodes of similar type pain while treating Babesia.
I used to sometimes give him Aleve for headaches (blue meanie pills to him) but they did nothing for this type of pain.
Generic ibuprofen does help -- acts quicker than herbal anti-inflammatories. Hubby usually wakes from sleep in pain so his is worse lying down.
One way to document this would be by thermography -- would show hot spots along the spine most likely. Hubby had these tests done several years ago.
Actually one chiropractor had a smaller less expensive version of thermography testing, but can't remember the name of the gadget.
I don't think the inflammation is actually in the spinal column with hubby, but in the muscles. If chiropractic helps your son, then I think his problem is very similar to hubby's.
Hope this helps.
Bea Seibert
Posted by seibertneurolyme (Member # 6416) on :
This thread discusses the herbal anti-inflammatory hubby uses. Actually works pretty well if used regularly. Started using this when he had costochondritis.
The 2nd thing you could try is generic Ben Gay cream -- the eucalyptus is the active ingredient I think. Just use a small amount to test and don't use if the skin is sensitive to touch.
Bea Seibert
Posted by gael1111 (Member # 8816) on :
I had that kind of pain, to the point that I had to go on morphine. I started to do colonics, and give myself enemas with clear warm water.
The pain started to subside and I didn't need morphine any more. Believe it or not, most of us are dehydrated, and drinking is not enough.
There is a lot of info on the correlation between dehydration and pain. Google this info and you can see for yourself.
Hope this helps and you can get relief.
Gael
Posted by pab (Member # 904) on :
Thanks for the replies - they have been very helpful to me.
Foggy - I got the OK from Jordan's LLMD before he had the trigger point injections. I've had the same type of trigger point injections. The injections reduced my shoulder and neck pain and didn't increase any other Lyme symptoms.
Jordan has had a lot of PT in the past. His current pain is too acute to do PT. He does a lot of stretching.
Jake & Jordan are about the same. Their headaches are still constant. The headaches are more stable since starting Lovenox (heparin).
Aniek - The pain is stabbing especially when he is standing or walking. The whole back has pain. Jordan sees a great chiropractor. She is puzzled because his muscles aren't as tight as before when the pain was much less. He does get some relief after an adjustment - anywhere from 2 hours to 2 days.
Jordan hasn't tried Flexeril. Right now he takes 2 mg of Zanaflex at bedtime. He has also tried Skelaxin and it didn't help. The only other pain med he takes is Tramadol/Tylenol.
As you mentioned, I think Jordan's ``muscles inflame crazily to any type of stimulus.''
Char - I will have to research the inflammation of the iliosacral muscle. I'm really wondering about inflammation. How is inflammation treated? Jordan is on Lovenox so he can't take Advil.
Nal - Jordan was seen by his LLMD on 4/26. He has weekly blood draws because he is on IV penicillin.
Jordan's dad massages him every day. We've also tried heat, cold, Biofreeze and Lidoderm patches.
Seibertneurolyme - Jordan can't take ibuprofen. I'll have to research herbal anti-inflammatories.
Gael1111 - Jordan isn't dehydrated. He drinks a lot of water everyday.
Posted by char (Member # 8315) on :
Hi PAB,
How is Jordan today?
I am not sure what part of Jordan's back is hurting...may not be ileosacral if it higher.
My thinking is that if this particular muscle is known to get chronic inflammation; it is possible for another muscle to get inflamed.
We did x-ray to rule out broken tail bone. Our doctor felt it was inflammation. I think that it was.
She also had a run of thoracic back pain, not as severe. Maybe 3-4 wks, less intense than the first problem and a year later. She got some energy and was dancing. She says she "pulled her back" which started the whole thing. I am not sure that was the root of it; something must have been awry....
So it does sound like inflammation to me.(not a dr. of course)
How to treat inflammation? I think it was herx in my daughter's case. Basically rode it out with Tylenol and sleep med because she is so sensitive to any kind of meds. Her pain level not nearly as high as Jordan's.
So if it is a herx, it seems you could treat the pain and expect it to subside.
I have heard that diet can help or aggrevate inflammation. I need to learn about this myself.
You are a smart one and I bet I haven't said anything you don't know. I just hate to hear how J & J are suffering. Seems like you are amazing with them.