some backround history- 2005 fell down my steps...3 days later had symptoms come on out of nowhere while on vacation...
odd sensation tingling in arms and around my eyes...dizziness and motion sickness followed...symptoms seemed relieved a bit if I put pressure on the base of my neck.
I had a nuerologist consult who ordered neck MRI...found a broad base herniated disc. I went to three neurosurgeons- 2 out of three said that my neck wasnt causing my symptoms and one wanted to operate. By this time my symptoms had moved to my bladder
I went back to nuerosurgeon number 3 and he said NO way was it from the neck and sent me to the endocrinologist.
Flashforward to today- had a consult with a back and spine dr. He examined me and knew my symptoms before I told him. All the spots that are tight.
He said based on my symptoms they are most likely from a lower back herniated disc....it can even cause tightness in the hamstrings and calfs.
He said he feels that the disc in my neck could have been causing the sensitivity to light and head pressure...
he has seen patients present that way...and was puzzled neuro number 3 didnt send me to him in 05
Bad news neurosurgeon number 3 passed away 6 months ago. I found this out today and it is ahuge loss he is one of the top in the area.
MRI was ordered and of course treatment if a bad disc is found is steroid injections.
So, was all of this just caused by my fall and not lyme afterall.
I am now at my wits end. Nothing explains the weight loss though...but now I wonder what is really going on.
any thoughts??
[ 10-19-2009, 06:53 PM: Message edited by: cantgiveupyet ]
Posted by coltman (Member # 21272) on :
No Idea about discs - but I can see how one in your neck could cause all kind of problems. I did heard some things about people recovering from discs by doing Physical therapy and/or surgery
Corticosteroids do not help with anything but symptoms. They are incredibly harmful and lead to spread of of bacterial infections (which seems to be present in practically everybody - but mostly lay low in l-forms) .
Your signature says that you tested positive for Lyme , were they lyme specific bands
Posted by Shosty (Member # 12232) on :
I am in the exact same position as you. I was treated for Lyme from 2001-6. Fell on icy steps and when I went down, hit just to the left of my mid-spine T12) on the corner of concrete steps.
I also have lupus (honest), osteoarthritis, and osteoporosis. My MRI's showed 3 fractures (T12, T6, I forget which was the other one), and also indentations of the spinal canal, most of it from osteoarthritis.
You might want to look up "cervical vertigo." This is not always recognized by mainstream doctors (what else is new), and is more of a chiropractic area.
There is a lot going on in the neck, neurologically, and issues there can affect anything from vision to choking sensations to dizziness to chills and hot flashes etc. Balance centers are in the neck.
In my case, the fall made my ligaments loose, way up at C1 and C2, as well, according to the PT. The slightest jostling of my neck results in horrible symptoms for a week or so. I have been told that the vertebrae shift over to the right, and also one twists, with jostling, and then they put pressure on the arteries leading to the brain stem, which causes a lot of trouble. Again, read about cervical vertigo.
I am again trying physical therapy, with a very skilled person who does a lot of manual work,is gentle and cautious, and does thing sequentially (I.e. never strengthen before stabilizing.)
But the PT causes great pain, and also neuro symptoms like chills.
I am at a point that I called my LLMD and asked if he thought I should go back on antibiotics. I have been off 2 1/2 years now.
I can tell that some things are from my spine and neck, but there are other weird and bothersome sensations that feel more like Lyme.
Good luck sorting this out. Our injuries could have lured more Lyme bacteria and inflammation to our necks. It is possible. But gee, I am so reluctant to go back on meds.
I was referred to a very prominent neurologist but cancelled a few weeks before. I wanted to clarify things with the PT, but also, I am nearly phobic at this point about dealing with specialists on any problem that is not completely straightforward.
Posted by cantgiveupyet (Member # 8165) on :
thanks coltman...yes they were lyme specific bands...IGG and IGM Igenex positive..and even had the Igenex band verification test to make sure there wasnt a cross reaction which was positive.
I will have to dig up my old post to find the exact bands.
My neck doesnt hurt and i have no head symptoms now...they all went away after my bad reaction to zithromax in 05....dr today said symptoms can go away if the disc shrank...or shifted.
all my symptoms now are below my waist...dry mouth and weight loss...and never tired.
thanks for your reply
Posted by massman (Member # 18116) on :
Many spine docs only focus on mechanical problems.
After MRIs were invented they revealed that many people with visible bulges had no symptoms at all.
And discs that bulge usually get smaller over time not worse. Steroids as said above can make you much worse. And surgery may help at first but in many cases the pain returns.
Sounds like a pretty tough place you are in. Any previous injuries before that fall ?
Do you have a LLMD / LLND ?
Posted by Shosty (Member # 12232) on :
Oops, I responded about neck problems. But anything having to do with the spine can, obviously, cause sypmtoms that can be interesting.
It is possible that the spinal issues and Lyme could be interacting, and inflammation might be contributing to problems.
I will let you know what my experiment with abx does for me. Another thing: using a muscle relaxant to make PT more bearable has helped me. I use a tiny amount, very sparingly, but it has been a good aid.
Posted by cantgiveupyet (Member # 8165) on :
Thanks shosty- I am in PT too for my pelvic symptoms...which focus on the areas the dr today said would be tight if the lumbar spine is involved.
Massman- I am in a pickle...and yes today the dr said the bulges get smaller...sure glad Ididnt get that neck surgery in 05...that is why i went all out for 3 consults with the best of the best in the area.
No LLMD at the moment...the last one did think my fall could be a factor in this however.
Yes, i did fall twice on my tailbone before that fall...I was stiff in the neck after the fall in 05..and swollen big toe...but it resolved. Then three days later odd symptoms.
coltman- here are my bands...ive had about 5 igenex WB...and each time they became more positive.
IGM 31+ 39 IND 41 ++
IGG 31 + 34 IND 39 IND 41+ 58+
I had the confirm done on bands 30/31(glad i insisted) thanks to everyone on here. It was positive.
Posted by cantgiveupyet (Member # 8165) on :
Shosty- that is ok...because i have a bad herniated disc in my neck as well.
I guess I could have two things going on...lyme and this...it is beyond frustrating.
Posted by Shosty (Member # 12232) on :
I am with you! I functioned pretty well with Lyme for many years (paresthesias,some clumsiness, other stuff) but this has me feeling kind of handicapped. I can't lift and the neuro symptoms can get in the way of things I want to do. I am also very uncomfortable with pain at a level I have never had before. It is hard, right? And no easy answers.
PT is hard too. It is very painful, and it feels almost damaging. I am trying to push through in the interest of future progress, but there are times I feel it is maybe not a good idea.
I am still debating the abx. They did a number on my gut after all those years.
Posted by cantgiveupyet (Member # 8165) on :
Shosty- we are in the same boat. PT is very rough...but I have made great progress this go around....just tired of not being able to sit, stand or walk without muscle tightness...and without PT it is even worse.
what kind of Pt are you having done?
there arent any easy answers...and we are missing a reliable lyme test.
I could never stay on abx- always caused either a fungal infection or UTI..always had to stop.
Posted by lymebytes (Member # 11830) on :
I had several herniations in neck and back before LD ever came along. It can cause pain, but not the kind of pain LD causes and weirdness of LD and co's.
Sometimes it is hard to tell what is causing what, but I chalk 99% of symmptoms up to LD.
Take care.
Posted by lymebytes (Member # 11830) on :
I had several herniations in neck and back before LD ever came along. It can cause pain, but not the kind of pain LD causes and weirdness of LD and co's.
Sometimes it is hard to tell what is causing what, but I chalk 99% of symmptoms up to LD.
Take care.
Posted by sixgoofykids (Member # 11141) on :
I haven't read all the posts, this is just in response to your original post.
I had Lyme, for sure. The thing about Lyme is there are a LOT of toxins. If you Google toxins and chiropractic, you will learn a lot about what toxins can do to your spine.
The toxins cause subluxation. Then, you get a stagnant area where more pathogens and toxins can hide out, kind of like a stagnant pond.
100% of my shoulder problems were toxin/subluxation related. I actually had a healing reaction/herx in my shoulder where the pain became unbearable and I took prescription painkillers for it when it finally was not locking up anymore after adjustments. I have not had one bit of pain at all since then in that shoulder.
Drinking lots of water in conjunction with chiropractic treatments was a huge help for me. It washed out all those toxins. My husband even found he feels a little worse right after an adjustment before he feels better. My spine seems to be moving freely now.
I want to add, exercise of some kind, especially something like Pilates that focuses on alignment and strengthening muscles, is essential to keep the spine moving freely. You have to change the muscles so they don't pull the spine back to where it was.
And, yes, parts of your spine correspond to parts of your body because all the nerves go through your spine.
So, it's not that you don't have Lyme, it could be that Lyme caused your back to be out. That was what it was in my case. I would never have gotten rid of my fibromyalgia if not for chiropractic care. I was starting to think my fibro was permanent damage from the Lyme.
Posted by LisaS (Member # 10581) on :
This is such an interesting post and many great anwers. I am in the same predicamnet, where I had three bulging disks in my neck. I can hardly lift my arm cuz my shoulder hurts and an EMG did show muscle/nerve damage down my arms and in my wrist stemming from my neck.
The neurologist says soem of the symptoms are from my neck but only the arm/shoulder related symtpoms. He does NOT believe I have lyme but has offered no other reasons why I have all the other symtpoms I do.
Last week at a lyme meeting, there was six of us lymies sitting around a table talking. It turns out every single one of us had bulging disks in our neck, and we all had c6 or c5 bulging. Is this a coincidence.
My question is, does lyme settle in this particular area? Or does the bulging disk really cause these other symptoms and neuros are just not aware of it?
Posted by cantgiveupyet (Member # 8165) on :
I have C5 and C6 bulging too....interesting Lisa that everyone of you had the same bulges.
Sixgoofy- thanks for your reply. That is very interesting about toxins and where they settle. What did you take to get rid of the toxins.
I also feel better after PT..right after I feel great then feel worse a few hours later into the next day and then better again.
For me if my pelivs stays aligned the pain is less and I can be more active(but it is not staying aligned) SO, i felt maybe something else was going on in my back.
I have not seen a chiropractor...how do they differ from a physical therapist?
Posted by sixgoofykids (Member # 11141) on :
Chiropractors actually adjust the bone to the right place. Totally different than PT. Sometimes a chiro will work with a PT. The chiro can move the bone, the PT then can help you as he is now. I get that same effect from Pilates because Pilates is all about alignment (if you have a good instructor and take a reformer class), but the Pilates does not adjust the bone, just works on it from a muscular perspective.
Once the toxins got disrupted, they pretty much just cleared. Remember though that I'm in remission, so I'm not coming from the perspective of being actively ill anymore.
I drank a lot of water and kombucha (good for detox). I also took some zeolite. I used HEEL detox and also did a couple coffee enemas. Same things I do in general when I feel toxic.
Posted by cantgiveupyet (Member # 8165) on :
I had the followup appt to discuss my MRI results. I still have the large severe herniation at C5&6
the results of the Lumbar spine are as follows vertebral body signal and vertebral body height are preserved. There is desiccation with mild to moderate disc protrusion and left greater than right neural foraminal narrowing at L3-4.
No distinct focal disc herniation is seen but clinical correlation is advised regarding the status of the adjacent left L3 nerve root.
Impression: moderate disc degeneration with mild to moderate disc protrusion eccentric to the left at L3-4 level with mild sciolisosis convex to the left.
nothing abnormal seen at L1-2 L2-3, L4-5 L5-S1
The Dr today said that it is possible the disc protrusion could be altering the nerves and causing the pain I am having in my pelvis.
he suggested the guided injection epidural at L1
Dr also said ..well you were lead down the path of pelvic floor dysfunction, but maybe it isnt really that, maybe at the beginning of all of this your disease process could have been haulted if someone had gone about things differently.
I do agree with him on that. I just dont see how these results warrant an injection. I have a followup in 4 weeks.
He also didnt like that my physical therapist was giving her opinion on things(saying she didnt think it was a herniated disc issu) since she is not a Dr and did not go to school for 15 years(or some number he rattled off)
I guess I should look up the L3 nerve root and see what symptoms it could generate.
if anyone has anymore input let me know. He again stressed how these shots are 'no big deal' he does 60 a week...and has done 10,000
Posted by Shosty (Member # 12232) on :
Just want to mention that my PT actually did move my vertebrae over (my C1 was "translated," meaning it shifted over to the right, which then twisted my C2, and I also have a fracture at C5 or 6, and at T12 from a fall).
My PT and chiro both said that problems in the neck can result in pressure on the arteries leading to the brain stem. So along with pain, someone like me (and maybe you) have some weird neurological symptoms like dizziness, nausea, chills, sensitivity to light and so on.
I have obtained antibiotics from my LLMD and was going to see if they made any difference, but just got yeast (even w/out abx) and have gut issues from previous years of abx, and am reluctant.
Overall, sad to report, once again PT did more harm than good. If I could continue forever getting adjusted by the PT, that might work, but insurance only covers one problem, like the neck, for one course of PT.
I am considering handling it with chiro, Tai Chi, Pilates. With 3 kids, I have not done much for myself over the years because of money. I would rather have paid for a dance or music class for them than chiro for me. I am paying for that now, but I don't know that I had any choice.
Posted by Pinelady (Member # 18524) on :
I agree with seeing a chiropractor. Many times a good one can manipulate the vertebra into the
correct position. Good ones usually have to see the xrays or mri to determine which way they need
to go. I have one that goes out and it can only be manipulated from the front of my chest to the
back. He has to push on my chest while holding the hand under my back to get it back in place. I
went to a bad one when it first happpened. He pushed it from the back down and I lost use of my
arms till I could find someone to put it back in right. Took a couple of days and a trip to the
ER. LOL A good chiro can keep you out of surgery and traction unless is it in degeneration for
which surgery will eventually be indicated.
Posted by massman (Member # 18116) on :
Chiros have more education from chiro college than MDs do from med school.
They are both trained docs. PTs are not docs.
Posted by cantgiveupyet (Member # 8165) on :
the odd thing is I no longer have the dizziness etc...i had at onset. Thanks Shosty for sharing the opinions you received.
By the look on the Doctors face it is a HUGE herniation...which I already knew ...but to see the look on his face brought me right back to 2005 where one neurosurgeon told me I could become like Chris Reeves without surgery.
While I agree that PT's are not docs...my PT does know more about my pelvic floor dysfunction than most dr (who just look at me with a blank look) most have no clue what it is. It is a frustrating condition that gets very little publicity.
And im still trying to figure out what is causing mine.
I guess, with the neck Im just trying to prevent it from getting worse and touching the cord...anyone know how to do that....would a chiro know?
My back rarely bothers me...it is all pelvic and lower leg stiffnes....like a human tinman.
Posted by massman (Member # 18116) on :
Chiros can use different adjusting techniques.
That means that some will analyze and adjust you one way and another chiro will do it another.
I prefer and extensively used a method called the Pierce technique. No twisting or turning with the adjustment. You stay in a neutral position.
Could tell stories from here to Sunday on the good to great results we usually got.
Lots of info but check out the drawings of the pelvic misalignments - very easy to understand.
The pelvis is the base of the spine and if is not stable and in the right place there can be many types of problems. Many MDs do not understand this and pooh pooh it. Many medical x-ray docs say all is fine if they don't see breaks or cancer.
Posted by Pinelady (Member # 18524) on :
I asked around till I found a good one. By the way he told me the longer I waited to get it fixed the
longer time it has to set up nerve inflammation and the longer it takes to heal. So if mine goes out, I
don't wait. It causes severe muscle spasms and even feels like it is pulling the meat off the
bone. Now I understand.
Posted by massman (Member # 18116) on :
Pinelady - glad you got a good one and that you get adjusted as soon as it goes out.
Posted by pab (Member # 904) on :
We live in the Twin Cities (MN). Maybe you could find something like this in your area.
Posted by cantgiveupyet (Member # 8165) on :
Massman- that is exactly what my PT says that Dr dont understand that the pelvis does indeed move and go out of alignment... problem with me is mine keeps going out of alignment and as a results it affects all the muscles.
It was this reason(the pelvis not staying aligned) that had me request and MRI of my back to rule out some disc issue. At this point I dont even know if lyme is causing this or it is just something structural. Either way I dont think an injection into my spine will solve this either.
I will check out the site you posted. Thanks for your help.
Posted by JamesNYC (Member # 15793) on :
You can have lyme AND disc problems. And therefore you can have mixed symptoms that just confuses everything.
However, a orthopedist diagnosed my brother's hip and back pain as caused by the facet joints. He said "burning" the nerves would fix the problem. Naturally it didn't and the Dr was stumped.
Long term abx did fix it.
Posted by Shosty (Member # 12232) on :
Well, I am again at a loss. PT coverage has run out. MY pelvis is not aligned, my vertebrae slide over and/or twist, the osteophytes are close to the cord of even touching, 3 compression fractures(from a fall), scoliosis (from the fall) osteoarthritis in left hip, osteoporosis in spine and hip, and lupus and Lyme. My muscles are all in spasm and tight.
I do not know if there is a PT on the planet who can handle all this properly, and certainly not in the time allotted.
Since many of my symptoms are neurologcal (chills, nausea, slurring sensation w/speech, trouble with flashing or bright lights, memory issues and so on) I was considering trying abx again, but got a bad yeast infection, which I think is in my gut, before even starting.
I have been carrying on what might be considered normal life because of my 3 kids, but am feeling very handicapped now that PT is over.
SO, not to focus on complaining, and not to hijack the thread, because this is all relevant to everyone else, I hope, but how do I determine the best chiro? I have looked for the Pierce technique, but noone in my area does it.
Any suggestions that can help me and other posters on how to research chiros? The potential for damage by the wrong one is scary, and includes stroke for these neck issues. Argh!
Posted by massman (Member # 18116) on :
The stroke / neck concern is mostly BS. I am biased there because I am a chiro, but I have explored it thoroughly. A good number of the reported cases involved PTs and the public manipulating the neck.
IMO it is a very refined hands on skill. Just hearing a "crack" indicates SOMETHING moved, not necessarily the right joint in exactly the right direction.
2 suggestions:
google for Vern Pierces son. I believe he is in North Carolina and he may have some other docs that he may know about.
google for Dr. Maurice Piscittano near Pittsburgh. He further developed an adjusting instrument and has a list of docs that trained with him.
If you wish to PM me with a large city location close to you I could actually do the calling, and get the results back to you.
Posted by Pinelady (Member # 18524) on :
Wow Massman I love the cape. You are a good man.
Posted by massman (Member # 18116) on :
Talked to Pfrimmer school. Interested ?
I used to have to sleep in one certain position or my back would get so hammered I could hardly stand for days.
After one (1 !) massage with Pfrimmer technique - a non deep cross fiber technique - I could sleep in any position and feel very good the next day.
Sleep in the chandilier, in the barbeque pit, under the van on the ground, hanging from a tree...
Posted by pab (Member # 904) on :
Shosty,
You posted about your ligaments being loose. Have you considered prolotherapy? Prolotherapy tightens loose ligaments.
My sons have had good success with prolo.
Posted by Shosty (Member # 12232) on :
Thanks all. Last night, after posting this, I reached up to push a top window sash down, and feel crippled! I have chills, dizziness, clumsiness, funny feelings in my legs, pelvis, arms (not Lyme). Arghhh! Mainstream PT only makes this worse.
An calling a chiro who has helped in the past, but only symptoms, not cause.