posted
I have had Lyme for 16 years .I had an MRI done and there was "foci of hyperintensity on the white matter of my brain" then, the doc told me to go get a second MRI from a different view. He just called me (he's not a Lyme doc , but a neurologist and doesn't know much about Lyme) and he tels me that he second MRI is consistent with MS, VERY consistent. OH MY GOD!! PLEASE HELP. I have had extreme twitching and leg cramping lately and have just started Ketk again for about two weeks. What does this mean and weakness in my left arm. Thanks.
Posts: 298 | From los angeles | Registered: Mar 2006
| IP: Logged |
dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
don't panic yet, very scary I know. Read my response to this post. Actually read all the responses.
posted
Are you herxing? This could definitely be the Lyme...a lot of people have been misdiagnosed as having MS and you already have the Lyme diagnosis.
Hang in there!! It does sound scary...
Posts: 92 | From Shepherdstown, WV | Registered: Jan 2006
| IP: Logged |
posted
Maybe Herxing...I can't tell though because I have never felt this kind of feeling before. My twitching is deeper in a way and I have never had muscle spasms before. Really pronounced muscles spasms with headache. And non stop ear ringing. The spasms never stop and feeling weakness in my left arm, which is also new. It just feels deeper than Lyme. Does that make sense or is this also a result of Lyme?
Posts: 298 | From los angeles | Registered: Mar 2006
| IP: Logged |
posted
I'm not sure what your case is....but I do think it could be Lyme.
It's so insidious. I saw a documentary ("Under Our Skin") at the Lyme Conference. One woman looked like she was having extreme movement problems (almost like siezures) and at least one other person said that their mom couldn't walk anymore....she herself was having problems walking & talking.
I don't mean to scare you!! But it could be Lyme.
Oh and headaches and ringing in ears are symptoms of Lyme, too.
Posts: 92 | From Shepherdstown, WV | Registered: Jan 2006
| IP: Logged |
posted
I had a weak left arm several times prior to abx therapy. Once I was actually unable to open my car door with only my left arm. This from someone who had prided herself on being able to do 4-5 sets of "real men's" pushups at the Y! It was so shocking. This seems to have resolved after 6mos of abx.
However, the ringing in the ears has never gone away. Neither have the tingling/painful feet.
I also had incredible twitching spells that made me begin to think I was really losing it. Those also have mostly resolved w/abx.
Since we're neighbors, I was wondering if you think you might have been bit in this area? I know I was bit in the hills of Pasadena. Your symptoms sound so much like mine. I was thinking that maybe we were bit by the same strain.
My opinion, in case you haven't figured it out is: Not MS, but Lyme disease, or if you prefer, neuroborreliosis.
Have you found an LLMD to treat you yet? I ended up going to SF to see the NP of Dr. S. I would love to talk w/you sometime. If you're willing, PM me.
Patti
Posts: 449 | From Pasadena, CA, usa | Registered: Aug 2005
| IP: Logged |
posted
I would love to PM you but it's not letting me as I must have blocked that in the beginning of setting up on this site. Do you know how I might undo that and also, I was bitten in NJ while canvassing for GreenPeace of all things. I would also love to speak with you. I have seen Dr. Harris. He is great. Do you know him?
Posts: 298 | From los angeles | Registered: Mar 2006
| IP: Logged |
posted
There are a few LLMD neurologists -- not many but they do exist. There is no way I would trust a standard neurologist to know the difference between M.S. and Lyme.
This is too important to either ignore or to just start taking M. S. drugs -- I am pretty sure that would make Lyme much worse.
Post in seeking a doctor that you are looking for a LLMD neurologist and give your location. The two I know of are in Texas and Connecticut, but surely there are a few more.
Once you locate one you could have your LLMD send the MRI films for a review if you can't afford to make an actual appointment.
In my opinion you have Lyme, but I am not a doctor.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
posted
Thanks Bea. Will do.
Posts: 298 | From los angeles | Registered: Mar 2006
| IP: Logged |
cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
If you think you are herxing then it might not be MS. I get ear ringing a lot while on abx. the deeper pain you are refering too...does it feel like it is coming from inside? my pains are worse while on abx.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
| IP: Logged |
posted
By deeper pains I mean like real muscle cramping that is almost constant and not just twitching and the twitching seems to really involve deep muscles and is slower sometimes.
Posts: 298 | From los angeles | Registered: Mar 2006
| IP: Logged |
posted
I think you must mean Dr. SH. I only know of him, and he was my 2nd choice, only because of location. I have sister in SF who I can stay with and can visit with at the same time as my appts, so it's more convenient for me.
He has an excellent reputation, so I'm sure you'll be in good hands if that's who you decide to go see. His father started Igenex.
Posts: 449 | From Pasadena, CA, usa | Registered: Aug 2005
| IP: Logged |
quote:Originally posted by lalyme: By deeper pains I mean like real muscle cramping that is almost constant and not just twitching and the twitching seems to really involve deep muscles and is slower sometimes. [/QB]
I've heard of plenty of others on this board over the years who have had similar intense muscle pain and spasms. Can you back off the meds to see if the herx lets up? [with your LLMD's permission.]
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
Okay, here is a controversial thought. If you are not taking antibiotics and know someone with a rife machine, borrow it and set it to frequency 432 for a few minutes. If you feel bad a few days afterwards you probably have Lyme.
Have you had an EMG test done? Many people with MS fail that but many with Lyme (like me) pass.
I had ringing in the ears long before I got diagnosed and twitching, imbalance, and falling down. I have one lesion(as of 2 years ago) and am due for another MRI. I did have 2 positive Lyme tests. The symptoms are so similar.
I don't know much about MS, but can some of the treatments for MS be tolerated by Lyme patients and not harm them--other than steroids. In other words can you be treated for both diseases at the same time? Hiker
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8876 | From Illinois | Registered: Aug 2004
| IP: Logged |
posted
I don't know much about MS , but where do I get an EMG test?
Posts: 298 | From los angeles | Registered: Mar 2006
| IP: Logged |
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by lalyme: Maybe Herxing...I can't tell though because I have never felt this kind of feeling before. My twitching is deeper in a way and I have never had muscle spasms before. Really pronounced muscles spasms with headache. And non stop ear ringing. The spasms never stop and feeling weakness in my left arm, which is also new. It just feels deeper than Lyme. Does that make sense or is this also a result of Lyme?
Hiya LaLyme.
Please try not to panic too much -- remember, a duck has just given you what is probably a misdiagnosis.
Most of us here have been misdiagnosed more often than not!
I know how scary it sounds, but please take heart and don't let it derail you.
Consider your headaches a really good sign. Because headaches are really not often a presenting sign of MS. However, they are FREQUENTLY a presenting sign of neuroborreliosis. Add some antibiotics to that for a coupla weeks, stir, and you got some monster headaches. If you were a person who didn't have Lyme, you'd be whistling Dixie and your head would be more or less fine.
I know the arm pain and weakness of which you speak. I could hardly lift a coffee cup! The pain is better now, not nearly as shrill. My hands shake a little with fine motor work. But I can now toss a bale of hay outta the back of my truck! Last summer, no way.
You have to keep faith. Especially during the "it's gonna get worse before it gets better" phase. Because it's real likely to. However, after a while in the trenches, you are going to start doing better.
MS treatment, on the other hand, is putting a band-aid on your symptoms and doing nothing to kill the bacteria actually causing your symptoms.
I cringe to think of where I'd be right now if I had listened to my neurologist's words. I cringe to think of the people who still have Lyme, unaware, who are trustingly listening to their neurologists every day and taking their MS drugs -- to the delight of the borrelia population inside their heads.
I know you're not going to be one of them -- you're going to get better!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
| IP: Logged |
I only just joined the group, but I feel moved to write to you and I hope you dont mind me jumping in here.
I have had Lyme for 14 years, and have currently got the "youve got MS" diagnosis just about to fall on me.
A couple of months ago I was persuaded by an Opthamologist, to have a brain MRI, which showed multiple lesions - in the right sort of MS/Lyme places.
I went to the Optho for what they called at the time, Optic Neuritis, four years ago, and then I took Amoxy and Doxy combo, and ended up almost out of my mind with stabbing eye pains, flashing lights and photophobia, which I KNEW had been caused by Doxy.
I got a call from my own doctor telling me they had found "a little bit of MS" - and from that moment I dissolved into pieces. I couldnt sleep for weeks on end. From feeling OK except for the Doxy induced eye pain I ended up as a person with a frightening diagnosis over their head. I do feel for you so much, I have never been so scared in my life.
Twitches, tingling, you name it I had it - from the very moment I got told this. I was convinced that I was going to go off my feet any moment. Gradually, the stress has receded and so has the twitching, muscle pain and other scary stuff - like the hyper-ventilating, and IBS.
I am referred to a Neurologist which still hasnt come up yet - but in the meantime, Im under a Lyme doctor, so Im considering putting the Neuro off until I have had the Lyme medication.
I am 49 years old and I firmly believe that I do not have MS - and you most probably dont either. I cant believe how many people are being blithely misdiagnosed. Its heartbreaking.
Its been a frightening experience, but Ive learned that Doctors can be wrong too. Have faith and believe in yourself - you know you have Lyme, you know your symptoms better than anyone else.
Why oh why do they always have to call MS like this? Stick with the Lyme diagnosis LA, thats what Im doing. Ive been steam-rollered so much by this Opthamologist that Im doing my best to take charge of my own health now, and finding someone who knows what theyre talking about and who listens to me.
Take good care, Laney.
Posts: 6 | From Moorland | Registered: Apr 2006
| IP: Logged |
bettyg
Unregistered
posted
Laney, welcome to our lyme board! May I suggest you edit your profile to ACCEPT PM, private messages, sent to your home email address, but the board does NOT know what your home email is?
They just click on the 2 people standing together icon, and type you a PRIVATE message. It comes to your in-box, and you can read the entire note from there. But it's helpful for you to come back to the thread here on lymenet, and reply/delete so the sender KNOWS you read their message. You can block people too if they upset you, etc.
Welcome to this 24/7 LYME support group board!
Here's TREEPATROL's and Tincup's combination newbie links.
Print off the links then check them off as you read as you could spend several months reading all of this.
print & read Dr. Barrascono's 2005 info first; you will come back to this often.
Extensive info in Treepatrol's newbie links about the meaning of WESTERN BLOT IGM/IGG test results from Igenex! Be sure to read or print this info IF Igenex tested you ok!
Also, see Cheryl's extensive web sites on: LD DIAGNOSIS, SYMPTOMS, & TREATMENT ... wonderful! Read the area on CO-INFECTIONS! You could have from 1-12 other illnesses that tick is carrying...lyme, malaria, etc.
If you are showing symptoms of co-infections, I would like to suggest being tested for co-infections when you have LYME western blots done. It isn't cheap!! But if you are positive, you can treat the co-infections first, and then work on LYME symptoms.
EYE SENSITIVIES & NOIR, no infrared sunglasses info., 2-28-06 updated
YES, I have what you have! Are you on doxy too? That made my extreme eyes 200% MORE sensitive than they we were earlier. I learned a lot about eye sensitivity/lighting on www.marshallprotocol.com board. Look for AUSSIE BARB'S EAST FINDER and then eyes/sunglasses, etc. Wealth of info there.
You will need 2% amber and 10% amber ... Style no. 901 and 910. 1-800-521-9746 TOLL- FREE
mention you have lyme and marshall protocol, they will give you 20% off! Also they have been kind enough to replace the SCRATCHED LENSES & BROKEN BOWS! How's that for service?
I don't drive often at night, but I can wear NOIR's 901 lenses at night while driving; it creates soft candle lights coming at me...tolerable. NOT to wear in town with all the action of people crossing where they shouldn't be, etc.
from LOU to Betty on LONG web links and Thank You Lou!: "If you hit the return key in the middle of a link, I don't think it will be clickable anymore. An alternative that maybe Betty should be telling people about is the tiny url website. I have it on my tool bar at the top of the page and use it for those incredablylongwebsiteaddresses.
All you have to do is ask tiny url to produce a short version, which it will do with a unique address, which you then use instead in your post. Works just the same when clicked! Here is the website, spread the word!
3-1-06, fyi, I tried dragging tinyurl to my toolbar without success, so that's why I currently have LONG addresses vs. short tiny ones! I'll keep trying.
TESTING FOR LYME DISEASE ... 3 main LYME TICK BORNE LABS IN USA!
The WESTERN BLOT IGM & IGG blood test nos. 189 and 188, are the only accurate tests for LD. They should only be sent to these 3 USA's Lyme testing labs:
IGENEX LAB: 797 San Antonio Road Palo Alto, CA 94303 1.800.832.3200.
(If the early test, called IGM, is negative; the later test IGG is NOT done!) Please see their web site: www.igenex.com CALL for their current prices effective OCT. , 2005 and
to print their REQUIRED form, which MUST be signed by the doctor, DIAGNOSIS CODE NO. COMPLETED!; Medicare's UPIN no., and your blood taken EARLY in the week so it doesn't sit in post offices! Example, have it taken Mon. - Wed. Afternoon tests show more positive lyme results!
Here is the site to PRINT THEIR REQUIRED FORM to send with blood sample. For me, I printed the FIRST option available on the forms.
Write on their forms you want results FAXED to their drs. Office; snail mail paper copy so it's not lost like mine was!
NON-Medicare patients must PREPAY by check or credit card for the tests since they do NOT handle insurance papers. Medicare patients do NOT have to prepay!
2. MDLabs from NJ, www.mdl.net see their site; they too require their own form. NO prices are listed; you must call their 800 no.
3. BOWEN labs from Florida, www.bowen.net 727.937.9077.
You pay $250 tax-deductible payment for testing, and they send you a picture of what shows up in your blood. You also get the results within 24 hours after the blood is received at Bowen. They are also a 501(c)(3) lab and you can take the donation of $250 off of your taxes if you live in the US.
They fax the results and then about a week later send the actual pictures.
NO way to file for insurance since it's only a brief letter you get back from them even WITHOUT a 501 federal tax no!
Lyme should be diagnosed clinically using medical history in addition with the Western Blot blood tests as no currently available test is definitive in ruling-in or ruling-out infection with Ld pathogens, or whether these infections are responsible for the patient's symptoms.
NOTE: Please send a copy of your health insurance card to YOUR insurance comany (mine is Wellmark BC/BS, Iowa) for them to submit to BLUE CARD (handles other states) them to FORWARD to California's Blue Shield health insurance company since they will require that, DRS. Diagnosis Code No., and which date of service is correct (IGX has 3 different dates on their paid receipts....use the DATE OF ACTIVITY!).
FYI - mine was returned to me after 6 wks. After submitting; dr./blood lab failed to show DRS. DIAGNOSIS CODE NO. on their form! It went to 7 people to be returned to me! Disgusting!
IP: Logged |
It is a very common misdiagnosis in patients with Lyme. The horrific part is that the treatments prescribed for MS depress the immune system, and if indeed infection is present, considerable damage can be done. Lesions in the MRI are not uncommon in Lyme (or other neurologic infections). There are more Docs now who suspect bacterial cause to what is labeled as MS, even if they do not link it to Lyme.
Link below is a good compilation of peer reviewed literature re MS and Lyme.
Take control of your own health. Don't let MD's instill this kind of fear into you. This kind of fear impedes healing. Don't believe it for one second. Do not fall victim to the ignorance of the medical system at large on chronic infection and residual effects. Take the scans, get the actual films and the reports -- thank them kindly .. and be on your way (IMO).
IMO do not waste precious energy on 'disproving' MS. Spend it on getting well.
Never believe you have something that cannot be cured. Trust your instincts and educate yourself on how to heal.
Mo
-------------------- life shrinks and expands in proportion to one's courage -- anais nin Posts: 8337 | From the other shore | Registered: Jul 2002
| IP: Logged |
WildCondor
Unregistered
posted
Try not to panic! This is not conclusive ny any means. The same thing happened to me, the neurologist phone call saying due to the hyperintensity and white matter lesions on my brain I have MS. I thought I was going to die because nobody explained it to me. This is very common in Lyme disease, and vitrually no solid way to distinguish between the two that I know of. So, I was told I had MS, and of course, found out it was all Lyme disease, and of course, IV and oral antibiotics fixed that! Hang in there and get this checke dout by a LLMD. Even is they say its MS, research is showing that antibiotics help MS, so Lyme may be the cause, who knows! Stay strong!
IP: Logged |
LostCityAgent
Unregistered
posted
Hello, Lyme disease mimics MS in all the areas, simply stated this is a proven fact. I am not a doctor of medicine and can say that if you have a lyme positive blood test and were dx as a lyme patient it is about 95% sure that this is lyme stats wise and technically. Many people have multiple lesions on the brain and on the spinal cord (in the same person) who if they went to a neuro they would be dx with MS because you cannot tell them apart if the doc does not know his patients complete pathogenesis. He/she may not know the complete pathos for 1 or 2 reasons. 1, the patient does not share, 2 the patient shares and the doc does not listen. It is usually 2. I have multiple lesions on both sides of the brain, multiple lesions on the cervical spine. I am 27 years old, the plethora of these MS suspicious, non-specific lesions/foci are very old and asymptomatic. MS is rare in children, for me we are looking at 10 to 15 years of this. This is lyme progression simply stated. PS, I cannot believe that the monster told you this on the telephone. Someone needs to write a book/novel about the patient/doctor experience, seriously. I was misdiagnosed by about 9 different doctors until I found doctor P in Connecticut. I just happened to enter doctoral school here as I am from WA state (another state prev in lyme as it borders Canada). When my gen md said MS, I said "that is a lie from hell." He did the eliza (waste of my time and my blood) and denied lyme hands down even though the MRI said this could be a responsible etiology. Out of my 83 experienced symptoms, MS fits 14, thus it is not conclusive epistemologically. These men need to learn syllogistic reasoning. You will be fine, hope for the best, know it will be this way, own it. Fear not! I have been there though, the painful moments when your harms feel fear, the moments of hopelessness and utter loss. I know, I feel you. To show you that I understand I will share a poem with you that I wrote (I am no poet) in a moment of despair when I had no answers but my own certainty that I had MS. This was even before the lesions were found back in Feb. I am here for you for questions, support, prayer, to name a few.
Neuro Eclectic -- My left hand is numb, my mind is a slum. Vibrating and sprain, weak I am lame. Though energy is shot, old I am not.
I feel like dying, medicine men to me lying. Simplistic their answers, have I not cancers. Neuro eclectic, furious body is hectic. Weak are my legs, like rotten wood pegs.
Weather my eyes, dots seem like flies. Pinched many nerves, sleeping neck curves.
Why do they tell me, evidence is empty. Either curse or a stress, mind in duress. Abuse of my body, too many hot-tottie. Could it be nothing, a waist is my fusing?
Missed steps as I walk, tick tick is my clock. Storm in my spine, hands buzz like a chime. Twitches my thumb, back beats like a drum. Aspartame I avoid, holistic paranoid.
Not I go on, into the dawn? Free from my ills, swallowing many pills. Have no more to say, afraid I this day.
IP: Logged |
posted
Thanks to everyone for the welcome and the wise words that have been so helpful to me too.
I cant tell you how much I appreciate them also.
To be able to find and talk to people who have been through the same experiences, who have the same symptoms, and also, sounds like the same doctors! just means so much to me.
I have never been able to get through to any of the doctors Ive talked to - they just seem to sweep aside human feelings - and I deeply dislike the way they so blithely destroy peoples hope. Now I see Im not alone.
Im so glad I found this site, your informative, compassionate replies to this thread have also helped to strengthen my resolve, thank you to everyone for sharing.
Take Care all, Laney.
Posts: 6 | From Moorland | Registered: Apr 2006
| IP: Logged |
LostCityAgent
Unregistered
posted
Laney, That was a very good point to make. These many fabled doctors make the profession so unrespectable for those good, dedicated, loving doctors who may even shed a tear. There is a book called "Your Oppression, is Our Revolution" and it is mainly in philosophy circles, but check this quote out. PS, suggestion to all of you. Look up the hypocratic oath that all docs take and keep it w/you. Bust it out on them at any time.
"I would like you to take medical doctors into account. Think of the absolute absurdity in a trickling method that we have allowed to grow because no one has posed the question, on the world stage, about why we allow them to have so much power. Think of it clearly. You go to a doctor and pay him for advice, diagnoses, and medicine. Yet he can be rude, demanding, right or wrong, and is condescending (especially to the poorer classes). This is the biggest and most clear representation of trickling abuse ever."
IP: Logged |
posted
John I love your poem, I certainly could relate to it. I went through the whole MS thing too. After my spinal tap was clear for oligbands my neurologist said she didn't know what was wrong, if it was MS it was the quietest case. {I have about 100 symptoms} Maybe something was evolving! Its been 13 years. My rheum is treating me on flagyl now and sometimes i feel like my body wants to jerk and twitch that is new for me
Posts: 41 | From new york | Registered: Mar 2006
| IP: Logged |
Thanks for the quote - I think they must have known my Opthamologist - he was everything they mentioned in there - and yes, he definately did harm, and no, I didnt get any medicine for the pain, lol.
I will most definately be quoting the Oath to the next one who trys to stomp on my feelings. I like the phrase Ducks that everyone uses.
posted
Too LostCityAgent I loved your poem it is exactly the way I have felt for a long time.
That is until I found this website and all you great informative people. I was diagnosed at 35 with MS and have lost my vision in my left eye and some in my right.
I know now that even though my "duck" (love this term) gave me pill after pill for every symptom I have had, nothing worked.
I have been all the way to the bottom and now with this information I am going to fight my way back up to the top.
I knew I didn't have MS but what else could it have been? My mom has always told me about being bitten by a tick when I was a child and I even remember how crappy I felt even then.
Now this evil thing has taken some of my eyesight and my life has been turned upside down.
But I will not let it take me down NEVER! I will fight with everything I have in me until I beat this thing.
Never give up is my motto and now I really know I am in the right direction. I hope everyone finds their answers and take care.
-------------------- "Strength does not come from physical capacity. It comes from an indomitable will" - Gandhi IGeneX results - POSITIVE Bartonella and Babesia (Babesia worst of all) 18+ 23-25 IND 30+ 39 IND 41+ 58+ 83-93++ Posts: 54 | From columbus indiana | Registered: Aug 2010
| IP: Logged |
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
I did not get paralyzed in my shoulders until 5ths into treatment----Now I am getting well.
Don't panic---Just make a plan and stick to it.
It may get very rough or you may have a easy time from here on out.
But you will get there if you do it right.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
| IP: Logged |
posted
Could be chlamydia pneumonia too. Several people recovered from ms using vanderbilt protocol. cpnhelp.org
good luck to you
Posts: 433 | From new york | Registered: Dec 2004
| IP: Logged |
cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
This is a very old thread - Lots of members that no longer post here weighed in... I was surprised reading it, to see their names, then checked the date!
lalyme, whatever happened with this?
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
| 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!
![[group hug]](graemlins/grouphug.gif)
![[Smile]](smile.gif)
![[Cool]](cool.gif)
Printer-friendly view of this topic