posted
When my illness first started I had foot arch cramping. Now those foot arch cramping (I assume it was bart related) symptoms have greatly reduced or gone away. There is no cramping in the arch of the foot but there are muscle twitches in that distinct area. However now on the other side opposite my arch it is tender and hurts and my foot hurts on the bottom after I've been sitting a while when I try to walk. Also some arthritis feeling in the ankle. Could this be the start of ALS?
I also have weakness in my legs sometimes like they're jello-ish when I get out of my car real fast. What do you guys think? Why has the foot pain switched around to where it is in my foot?
disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
Foot cramping or pain in your feet does not guarantee MS or ALS. Have you been talking to FS (seriously)?
BESIDES ALS and MS are LYME (and co-infections) in most cases and thus can be treated!!!
You most likely have Bart and need to have it treated. Just because it went away on its own does not mean it's not going to come back. I have Bart as well and have those symptoms.
I wouldn't be jumping to conclusions as you are doing. It's just going to make you nervous and anxious and have a panic attack.
quote:Why has the foot pain switched around to where it is in my foot?
Because LYME moves around in your body. Same reason why some people have arthritis in one knee one day, and then the next it's in the other knee, etc. Or some days both knees will hurt and the next day neither will, etc.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
| IP: Logged |
posted
My very first symptom was foot arch cramping along with calf cramping. First it was the left side and then also the right side.
I went to a neuro and he did all kinds of testing including an EMG.
Then a few weeks later my calf starting with the muscle twitching-shocking sensations-buzzing-pain.
To this day 4 years later I still have this symptom 24/7. I no longer have the cramps but the other symptoms in mostly my left calf.
The only thing that greatly decreased this for me by around 75 percent was Rocephin.
My calf is very strong and there is no weakness or atrophy. I still somedays do worry that it could be something else but after 4 years I have to conclude that it is indeed Lyme.
I have been treated for Bart as I was positive with Levaquin and Rifampin but none of them did anything for the calf symptoms.
Posts: 343 | From North Carolina | Registered: Oct 2008
| IP: Logged |
luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Clint,
I had the foot and calf cramping too and what resolved it for me was supplementing with magnesium.
Most of us with lyme are magnesium deficient and my LLMD says take as much as my bowels will tolerate.
I take about 400 mg daily. At one time I was very crippled but today I am back to normal (although I work hard at staying healthy)
I agree with dj that ALS/MS are just names given to disorders wherein the body attacks itself. Cause unknown. Lyme is certainly one culprit.
I also read recently where Dr Blaylock (neurosurgeon who prints a Wellness Newsletter) said research regarding Vit D has found that every cell in our brain has a Vit D receptor and that supplementing Vit D3 is improving and preventing alzheimers and ms. I don't think he mentioned als. Do get your Vit D levels checked before supplementing or just sit in the sun for 30 mins daily if you live in a hot climate (south of mississippi) 30 mins of sun will produce up to 50,000 IU of Vit D. No one has ever overdosed from Vit D received from the sun. The body knows when it has had enough. Lots of us are Vit D deficient. The FDA has recently increased their daily recommended amount to 1500 IU for healthy people.
Does your doctor have training in advanced medicine from www.acam.org or www.functionalmedicine.org? If not, you might want to seek out one of these medical doctors to work with in addition to your LLMD. I believe we have to work on much more than just killing bugs to get well.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
| IP: Logged |
posted
"if you want to believe your lyme will turn into ms or als, it most likely will."
Can some please tell me what the individual who wrote this means? i am new here and have the same worries and is that a little harsh . We are here to support ppl and help calm fears. Remeber lyme can make you paranoid. Lets not feed the fire, enough of society already does. I know a lot of ppl include myself worry about ALS becuse the process of getting better is so slow and some of the symptoms are alike. I will go on record saying i worry about it all the time even though i know its not true. prayes of wellness for everyone
I am a Dreamer, Believer, and Conquer; I will overcome this disease !!! Posts: 382 | From Alabama Via PA | Registered: Jun 2008
| IP: Logged |
djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
i mean if you do not conquer your fear it will get the best of you.
by believing something is a possability is giving it power and giving it life.
everything has energy, including your thoughts.
all that aside, ms, als, and the other late neuro degenerative disorders are sparked from sort sort of infection. they are names for sets of symptoms which i stated above.
thinking caps time.... why would it behoove the US med system to get to WHY these things happen when they can manufacture TONS of meds to treat symptoms for "CONDITIONS"??
its not a conspiracy, its a sad state of affairs.
what i am trying to convey, and no its not meant to be harsh, is that dont even let your mind go there. do not give the though power, do not give the negativity and fears and doubt room to grow.
they will overcome you and cause your healing time to be prolonged, perhaps greatly.
if you are aggressively attacking lyme and all the other causative factors that have gotten you all so sick in the first place as in my case then youll be fine. ms, als, and big bird disease wont come around ever.
cheers
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
Thank you for clarrifing the above statement. It just took me by suprize. I still dont agree that it will turn into it, but i will agree mentally it will slow down your over well being:)
I am a Dreamer, Believer, and Conquer; I will overcome this disease !!! Posts: 382 | From Alabama Via PA | Registered: Jun 2008
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
This certainly can be disconcerting. Be sure to talk to your LLMD if you need to. ALS/MS is often untreated lyme. You are being treated so that is a huge relief.
Are you taking enough magnesium? Up to 2,000 mg a day - to bowel tolerance and with B-6?
Do you have good foot support/arch support in your shoes?
Can you get massage?
As for this just being part of the "package" you might ask your LLMD for suggestions of reading materials - or articles she may have written.
Reading what others have gone through is absolutely vital to our understand of the nature of lyme and TBD.
Stuff moves around with lyme. It can be erratic and confusing and it's all just part of the deal - part of the new reality.
Of course, we don't like it but the more we understand it the less freaked out we will be and we'll be in a better frame of mind to have patience when needed or to take proactive stance when required.
These sources should be of help in understanding what is involved. Sure, some of the reading can be very sad and frightening. I find it helps to read as objectively as possible so that I'm seeing with the eyes of prevention rather than doom.
It is quite sobering, still, so it's good to follow with activities of enjoyment - something that nourishes and replenishes.
JillF
Frequent Contributor (1K+ posts)
Member # 5553
posted
Ah, Als
I remember when I swore I had that. I was sick and doctor after doctor (13 different doctors/specialists, I think) could not figure out what was going on with me (or thought I was crazy insane, depressed and/or had an anxiety problem). I remember saying 'I will die before they find out what is wrong with me'. I seriously believed it too. Scary, scary time, especially as a new, first-time mother.
Then I made the mistake of reading about ALS. I had the leg weakness, swallowing problems, twitching, cramping, problems coordinating walking, problems speaking, air hunger, tripping over everything, dropping things, leg/arm fatigue, slurred speech, etc, etc. All the hallmarks of ALS from what I was reading
Went to a neurologist thinking he was going to say you have so many months/years left. Ended up he thought I was crazy too. LOL
I learned to stop reading about my symptoms since all it did was freak me out. I had MS type symptoms, ALS type symptoms, Alzheimer's type symptoms, Lupus type symptoms, FMS type symptoms. My symptoms were under all categories of illnesses/disorders/diseases/cancers/syndromes
I also learned not to freak out so easily. I spent too much time worrying, stressed out...wasted time I should have been doing something else. Probably made me that much worse in the end
So many of us here have had/have the same symptoms as you and others who think it could be ALS. The chance it's ALS is so slim. As you are treated for Lyme you will find that, over time, your symptoms slowly get better. Some disappear totally. Eventually the idea is that we end up cured...don't know if I still believe that yet but I can hope
Posts: 1485 | From USA | Registered: Apr 2004
| IP: Logged |
Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
Are you in pain? If the answer is yes, it is not ALS. ALS is not painful until very, very late in the disease. Lyme disease on the other hand in most cases is quite painful.
-------------------- Mathias Posts: 1242 | From New Jersey | Registered: Feb 2004
| IP: Logged |
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Clint, if many neuros said you don't have the true symptoms, I'd take some comfort. Remember, while neuros could care less and despise Lyme Dxs made by LLMDs, they do care about ALS, MS, etc. Knowing that makes me sleep better.
I've Dxed myself with 28 diseases quickly by using the Internet.
Hypothyroidism, MS, Lyme, every co-inf known to man, brain tumor, vestibular disorders, ulcers. When would it end? That's why I laugh when I try to personally Dx co-infections based on symptoms.
My LLMD asked me if I think my Babesia is gone. Yeah, OK? Sure I think it's gone doc, but I suspect Bart symptom #27A has reared now. lol.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
posted
Thank you guys for all the comforting replies. You are like a family member to me in a time of need.
I have pain. Pain and cramping. Today its on the opposite side of the arch, the outside of my life foot. Its also differently formed than my right foot. It doesn't really look like wasting, but my feet aren't symmetrical. This freaked me out more. It almost looks like there is some swelling and a part of my foot comes out from the side..... and it hurts in the area that is sore and tender on the side. My ankle and stuff is often stiff in the morning.
I had an EMG in june. If I had ALS I guess I would know it by now, as it doesn't really hide. It is scary how similar these two diseases can appear in people.
posted
did the doc say the test was clear? At least the doc did the test take comfort in that. Alot wont if do nero test. Best wishes. i am in the same boat as you, i have the test just afraid:0
posted
in June I didn't show any signs of neuromuscular disease.
But legs get stiff and tired easily. They cramp up when walking steps.
My left foot isn't symmetrical to my right foot. On the opposite side of where you have your foot arch my left foot like smashes and extends out farther on the ourside of the foot then my right foot. Almost like there is some swelling. This is where the pain is as well. There is also some stiffness and cramping in the left ankle joint. I'm afraid it is ALS but I don't know if these are very matching symptoms.
Also just don't know what else it could be. I knwo my LLMD said many people with lyme have foot problems. That comforts me a little. Also I had a clean EMG in june, so I would think the symptoms would be much more present now if it was ALS.
posted
Clint, I was at both ALS clinics here in San Francisco. At one clinic I was there twice I was so freaked out.
I didn't believe I didn't have it. I had weakness in my one leg, foot drop, muscle fasiculations, etc.
All of those symptoms are now gone with two years of antibiotics.
I had myself convinced I had it even after seeing the two top Dr.'s here in San Francisco.
If you've had an emg and been checked out you probably don't have it. Worrying about it can play havoc with you're mind. I tell you that only from my experience with it.
ALS doesn't get better, it gets worse with time.
Just wanted to share my story with you.
Good luck.
Barb
Posts: 281 | From san francisco | Registered: Jun 2006
| IP: Logged |
quote:Originally posted by Mathias: Are you in pain? If the answer is yes, it is not ALS. ALS is not painful until very, very late in the disease. Lyme disease on the other hand in most cases is quite painful.
Exactly!
Posts: 16 | From Ga | Registered: Jul 2008
| IP: Logged |
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I believe so without a doubt Clint. I have exactly the same leg stiffness / weakness. It's horrid. I was wondering if low testosterone may be a cause too.
quote:Originally posted by Clint31: Can lyme cause leg weakness/stiffness and cause the leg muscles to feel fatigued? Can it cause foot arch cramping, foot aching, and ankle aches
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
Dawnee
Unregistered
posted
Clint I have the same stiffness. I remember the whole "ALS" scare myself.. just before I was DXed with Lyme. I was literally on the couch in the fetal position for over a week bawling my eyes out. Neuro thought I was NUTS but did an emg on my right arm just to shut me up (my right arm was useless)
Your symptoms are Lyme. And you are stressing yourself out for no reason.
IP: Logged |
Dawnee
Unregistered
posted
Also, at one point I was stressing SO badly that my whole body would tense up, my legs would draw up and everything. It was like contractions... and I'd shake like I'd been struck with lightning. I thought I was dying from that alone.. and come to find out, it happens when I get very stressed/scared, and it happens when I herx.
IP: Logged |
Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
Hi Clint,
I can understand your fears, I have had them also. I have had leg/arm weakness and stiffness, swallowing problems, numbness and many more scary symptoms.
After 7 years of abx and long term treatment for Babesia, I am working. I still have lyme, pains, cognitive problems and get bad herxing, but I am so much better than before any treatment.
I also did alternative stuff like getting my mercury fillings out, vit C IV's and have changed my diet quite a bit. I do not eat bread or drink pop/sugar anymore, it's not worth it.
I hope you have a good LLMD and start feeling better soon. Lyme is treatable and many people repond to treatment.
-------------------- God Bless You! Everything..is just my opinion. Posts: 6638 | From Michigan | Registered: Jun 2001
| IP: Logged |
posted
Like this morning I was asked to do a lot of walking at my job and my legs were just very very very weak and fatigued when I did so. This scares me
posted
Does ANYONE else here with Lyme have leg muscle fatigue that makes your legs feel like jello when you do an excess amount of walking? Is it possible that lyme can cause this problem for someone or does it make it likely that it is something more serious?
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Yes, Clint, I have EXACTLY the same thing. I've had it for 10 years. 12 years ago, I used to run 5 miles a day and work out 90 min+ every day. I got very sick in late '96 and all of a sudden experienced what you are. I never recovered.
I went through super extensive testing at Cleveland Clinic at their neuromuscular dept. All tests were normal (thank goodness). So by deduction, it's most likely a TBD. I despise this disease. It seems unbeatable.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
posted
I guess, my fear/question is should I stop worrying about ALS, is it most likely lyme/chronic fatigue/fibro related, all of which I have been diagnosed with
Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
Get tested for mycoplasma fermentans. That was the cause of my ALS type presentation. I had multiple EMG's and they eventually started to show problems until I started antibiotic treatment for a CNS mycoplasma infection.
M. fermentans is implicated in a lot of chronic fatigue/fibromyalgia cases.
-------------------- Mathias Posts: 1242 | From New Jersey | Registered: Feb 2004
| IP: Logged |
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Mathias,
What lab do you recommend for that one? What is the Abx treatment protocol?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
Clint, as an old-timer around here, I can say that a number of folks have posted here thinking, and/or having been told they had ALS. To my knowledge, none did. Some physician call Lyme, like syphillis, the great pretender. It can mimic almost any illness.
My first definitive Lyme symptom was numbness and weakness in my legs and knees. I walked like a falling-down drunk and COULD NOT climb stairs.
Some things to consider, in my opinion, are magnesium, B12, and general B vitamin status. B12 deficiency is not always detectable by blood test and can cause demyalinization of the spinal cord. The deficiency, prior to permamnet damage can cause neurological symptoms in the extremities along with cognitive problems. Many of us are B12 deficient. In my opinion, it's easier to test for B12 deficiency by taking B12 shots than by taking an unreliable test. One of the doctrines around here is that you have to take methylcobalamine, which is compounded and fairly expensive. I've done well with the standard B12, Cyanocobalamine, that costs about $7.00 for thirty doses. It's prescription in the US but a fair number of physicians are indulgent about prescribing it, even if they don't believe it will help, because it's so benign and inexpensive.
Other B vitamins are very important to well-being, energy, and skin tone. B Complex is easier to absorb orally than B12 and you could give that try.
Magnesium is good for twitching and cramping muscles. You can try taking it orally and see if your GI tract can tolerate of it enough to help. If not, and if you are up for it, shots of magnesium sulfate are an inexpensive option.
Hang in. If you perservere in an informed way you'll get much better.
Dave
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
| IP: Logged |
Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
What lab were you tested for mycoplasma at and with what method? PCR is the only reliable way to properly diagnosis it and just like lyme you need to be lucky to catch the bugs to get the positive PCR.
-------------------- Mathias Posts: 1242 | From New Jersey | Registered: Feb 2004
| IP: Logged |
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Thought I'd bring this up to the top to see if anyone can lend any support about my convincing myself I have MS, not ALS.
I have a couple of new symptoms that are freaking me out....facial tingling/tightness that moves around, but mostly around my mouth and on my cheek, and a slowish onset of unsteadiness....not balance, that's been tested at a clinic, but unsteadiness. A feeling of reeling a bit when I'm walking and I walk unsteadily.
I've been in treatment almost 2 years and I thought symptoms were supposed to disappear, not new ones appear?
Posts: 3528 | From US | Registered: Apr 2007
| IP: Logged |
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Hi
Have had all of those symptoms. Have you treated yourself for Parasites and Worms? check out
This is what came pouring out of me and many others. Parasites and Worms are a MAJOR part of Lyme disease. Please don't ignore this,
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
| IP: Logged |
dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
This may help give you a sense of relief.
go to this link & scroll down til you see this: "Chronic Lyme Disease: Connection to MS- Facts behind the controversy"
I was told MS in 1988...found this particular LLMD in 2003. Yep, positive lyme WB...no other doc even did a WB sinde my ELISA test was always negative.
there are more links to info, I just googled lyme/ms
Posts: 2675 | From ct, usa | Registered: Jan 2004
| IP: Logged |
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Worms and parasites can be responsible for some of these symptoms? How gross! I thought if I had worms/parasites that I would have gut problems. That's the one thing I DON'T have....
Posts: 3528 | From US | Registered: Apr 2007
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
![[group hug]](graemlins/grouphug.gif)
Printer-friendly view of this topic