Very sorry to hear of your leg problems. Wish I could help, but all I can do is share what happened to me.
My initial infection was in 08/1992 (one of the worst symptoms was burning lower back pain which makes a lot of sense if you read to the end of this post). After about six weeks I recovered about 80% of health (with NO leg symptoms), and during the next 28 months I suffered only a lingering infection which cycled through every 4-6 weeks or so.
Of course, I was misdiagnosed every step of the way, but was given a strong injection of rochephin in 1994 for what the dr suspected was pneumonia.
Just a few weeks later, on 12/21/1994, the infection came back even stronger than before. When I woke up that day, the lower legs felt like a combination of rubber and lead when I walked. I thought it was just a flu symptom, but 13 years later it has only gotten worse.
Just like you, if I soaked my legs in hot water, I could barely lift myself out of the tub (as you said, the legs were like lead). Since this was the only test for MS years ago, I was just a bit concerned.
Many, many, many of us seem to share this symptom in the lower legs.
Since I couldn't get a dr to explain my leg problems, I wasted my time and energy narrowing down this problem to two nerves: the deep and the superficial peroneal nerves. One of these nerves travels down next to the shin and the other down the outside of the calf; therefore, I think for me the areas of the lower legs most affected are the front, outside quarters of each of the lower legs.
Since you said "legs" I'm guessing that your leg symptoms are also bilateral; i.e., both lower legs are affected. If you asked a COMPETENT neurosurgeon what might cause bilateral symptoms in the legs, he/she would likely tell you that the problem is inside the spinal canal.
(When I asked a neurosurgeon about my bilateral leg problems, he said it must be osteoarthritis in both knees. Later MRIs of the knees revealed no damage whatsoever.)
Then I wasted even more of my energy tracing the peroneal nerves back to the their origin in the spine. From memory, the nerves inside the spinal canal which end up forming the peroneal nerves are the L4, L5, S1, S2, and maybe some other of the sacral nerves.
Having had an EMG which determined L5 radiculopathy, MRIs which confirmed lower back disk degeneration, and a discogram which narrowed my leg problems, at the very least, to the L5-S1 disk, I feel sure that my bilateral neuropathic leg symptoms originate from spinal problems exacerbated by the Lyme infection.
I know that at least one other Lyme sufferer on this site who came to these same conclusions after getting no answers whatsoever from any medical source, so I don't think that I am very far from the truth.
I hope someone can point to medical info which details spinal/leg symptoms as relates to Lyme. Certainly, different leg symptoms may be present due to Lyme attacking peripheral nerves, but bilateral leg symptoms probably originate from the spine.
Posts: 175 | From Colorado | Registered: Feb 2007
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merrygirl
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posted
Southernco
Thanks so much for your detailed reply.
What you say makes a lot of sense and sounds like what is going on with me.
I do have a lot of back pain too.
My CRP is on the rise too.
Is there anything that helps you?
I would love to read any articles anyone may find.
Thanks- Melissa
Posts: 3905 | From USA | Registered: May 2007
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TheCrimeOfLyme
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posted
Do you have bartonella?
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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merrygirl
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Member # 12041
posted
I test negative, but I think I may have it.
Before I got sick I was a Vet tech so if I do't have it, it would be a miracle.
Doesn't biaxin treat bart??
I thought I read that.
I also have a chronic fever (7m) average temp is about 101
Melissa
Posts: 3905 | From USA | Registered: May 2007
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posted
I'm really sorry this is happening. Maybe the doxy is getting into your brain really well. That's gotta be pretty scary!!!
Have you been keeping a check on your blood pressure?? It could have gotten too low unless you are checking it regularly.
Maybe your LLMD would consider a trial run of bart meds.
my buddy
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Dave6002
Frequent Contributor (1K+ posts)
Member # 9064
posted
Southernco made a good point that Lyme pathogens may hide in the central nerve system- the brain and the spine and doing the damages, which cause bilateral symptoms.
So, using a heating pad or rife around the spine to drive away the pathogens or stimulate the recovery of damaged neurons would help?
Posts: 1078 | From Fairland | Registered: Apr 2006
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posted
I've had loss of sensation in my feet that comes and goes. For a while I was having trouble walking especially with my left leg. I'm not sure if it was noticeable to others because I was making a tremendous effort to walk correctly, but I felt my left foot was starting to drag.
My point is, be patient and do your therapies. It may well pass of its own accord.
Katy
-------------------- "There is more in heaven and earth, Horatio, than is drempt of in your philosophy" - Shakespeare. Posts: 13 | From Dallas, Texas | Registered: Dec 2007
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bettyg
Unregistered
posted
coloradoso
thanks for good explanations; i too have suffered from L4-5, C1-2 for 30-40 years where i also have crooked spine. learned alot; thanks for sharing your knowledge!
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posted
Southern's onto something w/ the L-5. I have for the past few months been having prob's (always had leg "issues" w/ lyme anyway, but...) then started having numbness in bottom of R foot, on ball of foot, under toe next to pinky toe. Couldn't figure it out. Went to chiro - as he was backed up, I had time to look at the chart on his wall. Seemed to point to L-5. After adjustment, was about 50% improved, but still there if I was on my feet for any length of time. Have had lower back pain during this time - actually for past yr or so. Tried the chiro about a week later - and lower back was so tight that he couldn't get it to adjust in lower back, although I got a good adjustment everywhere else.
This is what has helped -I took my micro moist heat thing - a long one, like for neck - maybe 3" X 12", and put it in a horseshoe shape on the floor. I would lay on it a few times throughout the day on the lower back - and curl legs up slightly, and roll side to side. Doing this, initially thinking the stretching & heat might help loosen the muscle so chiro could get an adjustment out of lower back - I found I had a very sore muscle, way deep, more in the hip/ butt area. Also, had accup work on lower back and down legs maybe 3 times now. For the past 2 weeks, it has been totally gone - so thinking I'm ready for the chiro to get it adjusted - finally. Also notice that now when I roll on the heat - that "hot spot" is not as sore as it was initially, but still there - but much less intense. The muscle that seemed to be hindering was very deep - after finding it with the heat wrap - I asked my husband to massage the area w/ china gel & use alot of pressure to see if he could find the "hotspot". He found it - on both sides actually, such a weird place, so deep in the sides of butt like that!
Get out your heat wrap and see if you find a similar sore spot, and roll around on the floor for awhile w/ the heat! Hope this helps!
Posts: 176 | From Tenn | Registered: Jul 2004
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Yes, I have had severe back pain along with the bilateral lower leg pain, numbness, tingling, and weakness. As I said, the worst back pain (10 on a scale of 10) was with the initial infection in 1992. In hindsight, the pain must have indicated that the Lyme bacteria were attacking the spine.
Had an ESI (epidural steroid injection) 4 years ago which increased the back and leg pain more than 100%. Woke up every morning with what felt like 3 burning pokers stabbed into the outside of both knees as well as the low back.
In my experience, NEVER, never, never have any kind of steroid treatment.
When I removed dairy from my diet, the pain improved somewhat.
After the first office visit about 8 months ago, my LLMD had to close his practice. Tried zithromax for a couple of days but gave it up because of terrible side-effects (don't think it was herxing).
With my age (63) I decided to go with alternative treatments. For about 8 months I have used rife, and "Healing Lyme" recommended herbals, as well as an infrared heat lamp, infrared heating pad, and an electric heating pad with castor oil packs.
My back and leg pain have improved about 50% since beginning alternative treatments so something is working.
dave6002:
Thanks for the reference. I sure wish the drs could explain this very common symptom instead of having to figure it out ourselves.
I have found every one of my symptoms detailed on this site. What a great resource the drs could use to put together a formal list of symptoms for clinical diagnosis.
Posts: 175 | From Colorado | Registered: Feb 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
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posted
Merry-
My legs got much weaker than my arms. They ended up getting so weak I could not get in and out of the tub without help. I had to pull myself up on the dresser next to the bed to get upright from bed and up. On stairs I had to lift each leg up to the next step and PULL up on banisters with my arms. Getting out of cars I had to lift my leg with my hands to get it sidewys out and then have help or pull up on the car to get up.
My personal take on progressive weakness is that anyone with it should be on IM or IV. I am not a doctor, as you know, it is my laypersons opinion.
Anyways, I also had progressive numbness up to my calves which began at my toes. My legs became like stilts.
They are 100% normal now except I have 3 toes which go dead if they get too cold but that is from frostbite as a kid not from Lyme.
Take care, kiddo, I am concerned for you- Best wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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merrygirl
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Thanks for all of your detailed resposes as it is GREATLY appreciated!
My legs are a tiny bit better. It boggles my mind how one minute you can barely walk and the next your better.
Crazy!!
I put a call into my PCP so we will see.
I wish I could do IV again.
I can tell something is not right (more than usual)
I am going to try to use heat today.
Thanks guys
Melissa
Posts: 3905 | From USA | Registered: May 2007
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CaliforniaLyme
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posted
Merry- that is not weakness if one minute it is bad and then it is better- if it is progressive weakness it does not get better like that- so it may be nerve related or something!!!!!!!! It took me a year to get strong again after I was so weak- You have something else going on!! Maybe a partial nerve paralysis or somethign at times, I don't know!!! Just a thought- Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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merrygirl
Frequent Contributor (1K+ posts)
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posted
Yes the weakness seems to be better. Could this just be a weird herx?
I do feel weak in my arms too.
Lymetoo-
My BP is down to normal after being a tad high. That was at the docs last week so only a one time check.
So sorry to hear you are having the leg problem. My 27 yr old Daughter has had leg problems off and on for many years. She got Lyme when she was 11.
She even had to use a walker about 2 months ago for a time. Then one day she woke up and could walk again. This is the second time this has happened.
The pain in her legs is unbearable, she will pace around the house all night sometimes the pain is so severe. She describes it as feeling like someone is stabbing her in the bones in the shin.
Also it is an achy feeling and numbness and weakness at times too. She was at one point so weak that her left ankle seemed to be caving in and she was nearly walking on it. Her feet hurt real bad too.
Her left food seemed as if it was twisting like hands do when a person has real bad arthritis. Then it went away and she could walk normal again.
Weirdest thing. We thought the general weakness was from her not being able to eat much and she was suffering from malnutrition. Not so sure of that now since it comes and goes.
Lyme is just the strangest and most frustrating disease..........I hate it.
Hugs,
-------------------- ICEY Posts: 468 | From Las Vegas NV | Registered: Jun 2005
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bettyg
Unregistered
posted
melissa, glad you are feeling so much better.
i am too; hurt really bad for 3-4 days; now today better again and easier to walk!
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Have you considered that food allergies might cause your daughter's unbearable stabbing pains in the lower legs?
I ask because that was my exact worst symptom before completely giving up dairy products. Mine was worst in the morning, waking up at 3-4 AM with terrible burning, stabbing pain in the sides of both knees. There is no pain medication, including opiates, which I found to lessen this terrible pain.
I only found out when hospitalized and unable to eat for 4 days. That burning, stabbing pain went away so I knew it had to be a reaction to some part of my diet. Like your daughter, I still have the background, almost constant aching which never relents.
Many of us develop food allergies/reactions because of Lyme. Now I have to check every label since even one slip-up will put me back in agony.
Posts: 175 | From Colorado | Registered: Feb 2007
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posted
Thank you so much for the suggestion, but since she went months without eating anything but carrot juice, Inflamix (from LLMD) and young coconuts I don't think it is from food. Her diet changes often.
The first time the leg pain got bad was when she was only 14 and still figure skating........of course the MD said it was osgood slaughter's disease (SP?) Then since it moved to her shins, it must have been shin splints.
The list goes on and on. Now when it happens it stays for months and never lets up. You are right, no pain meds help or muscle relaxers. They all just take a tiny edge off the pain.
If her head and legs would stop with the never ending pain maybe she would be more equipped to fight.
Right now she wants to go to sleep and never wake up..........UGH, I am getting worn out too and I don't even have Lyme.
I am glad your legs are feeling better, I will pray they stay that way.
Hugs,
-------------------- ICEY Posts: 468 | From Las Vegas NV | Registered: Jun 2005
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Pocono Lyme
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Member # 5939
posted
Foot pain Shin pain Neuropathies
more than not point to Bartonella.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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Very sorry to hear that nothing has helped your daughter's pain.
Her pain seems identical to mine except the location and intensity. The worst pain for me is in the bones at the sides of both knees although I do get spasms extending down the shins.
Has your daughter tried accupuncture or accupressure (noninvasive and as effective as accupuncture)?
Luckily, my wife is a neuromuscular massage therapist who has helped me tremendously. After reading a few books on accupuncture, I think her success may be due to the way she combines massage therapy with accupressure.
With me, there are some very sensitive accupuncture points running down the legs adjacent to the shin bones (I think corresponding to the path of one of the peroneal nerves).
If you press lightly with a finger at points below the knee just outside the shin bones down to just above the ankle, you'll probably find some sensitive points. With me, fairly light pressure can make me jump a few feet off the chair.
Other things which have helped me are an inexpensive infrared heat lamp and an infrared heating pad.
As I said, even opiates have been ineffective for me with this pain. Ultram/tramadol seems to help me with the neuropathic pain more than oxycontin and without the major side-effects.
Best of luck to your daughter and to you. Seems she is very lucky in the parent department.
Dave
Posts: 175 | From Colorado | Registered: Feb 2007
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Pocono Lyme
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Quote from above reply by SouthernCO
"If you press lightly with a finger at points below the knee just outside the shin bones down to just above the ankle, you'll probably find some sensitive points. With me, fairly light pressure can make me jump a few feet off the chair."
This is exactly how my LLMD examined my shins. He said often times the front of the shin is what is palpated. And yes, very tender along side of the shin bones. Bart.
He also found the stretch marks and another rash. I just read Treepatrol's BLO subject by Dr. B. and it fits me as I suspect it has affected almost all if not all of us.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
I get the weakness moreso in my legs also balance issues...
for me I think that it is the babs... but this is just my opinion from what I was treating when and what symptoms "flared" in herxes and whatnot....
I think it may be getting better ..finally... I still have to lean on stuff often but it really was most the time.
I have what i would describe as slicing pain on the bottom of my feet. Finally within the past couple days I can put on shoes and stand it. But I am still very happy to take them off
The bones in my arms and legs used to feel like they were being split open... it was awful...
I am so glad I dont have that now. I have pain in my joints and muscles and soles and chest now and that is enough.
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