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rae599
Regular Member


Date Joined May 2007
Total Posts : 29
   Posted 8/15/2008 7:31 AM (GMT -6)   
Hi, sorry if I end up repeating what others have asked already but I honestly am so tired I don't have the patience to read everyone's old posts (I've been trying to go through things for nearly an hour, supposed to be working, oh well...). I'm just feeling quite frustrated at the moment. I have been through so many tests that have all come up clear but I'm still having symptoms.
 
I've been (re)tested for Lyme's, autoimmune, active hepatitis C (I had a positive antibody test, apparently at some point in life I was exposed to it), and had a clean MRI. A little background - last year when I was still living in Maryland (which is where I am from) I was told that I had Lyme's disease. This was mostly based on my symptoms because my blood tests were only highly suggestive and not conclusive. For the past few months (off/ on) I have been experiencing similar symptoms as before. They are:
 
- fatigue/ i never wake up feeling rested even though i could sleep for hours and take at least a 2 hr nap every day
- tingling/ numbness in hands and feet. i cannot tell when my hands and feet are cold until i touch something warm
- memory/ cognitive problems. kind of a brain fog/ concentration problem.
- pain in right side of my neck radiating into my shoulder/ arm/ fingers
- sometimes i have difficulty focusing my eyes a bit.
- my body feels heavy, especially when i wake up in the morning, like i really don't want to get up anyway b/c i'm tired but that certainly doesn't help when it feels like it takes so much effort to move
- pain my right calf, it often feels focused on one part of the muscle but sometimes the whole thing gets tight and painful.
- dizzyness/ sometimes have trouble with my balance. my neurologist did a basic physical exam and i almost fell over when i was supposed to stand with my feet together when my eyes were closed.
 
and a new one, for the past 3-4 days my back has been feeling like it's asleep (very tingly/ numb) right below my left shoulderblade. i've tried sitting differently, moving my arm around and it will not go away.
 
The MRI of my brain came back clean and so far everything else has not had any helpful results. I am just tired of no one having any answers. It's tough because most of my symptoms are so general and can't be linked to one specific cause. Everything could be explained by everyday type issues (I could have a pinched nerve, I need new glasses, I'm dizzy, etc because I am overly tired, etc.). Is it possible/ likely that I could still have MS? This was one of my old doctor's worries last year but it seemed like it got brushed off as one of the possibilities.
 
I know that the simple answer is to go back to the neurologist, I just needed to vent and see if my experience has been typical for anyone else.

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 8/15/2008 6:36 PM (GMT -6)   
Hey Rue

Yes, u'r symptoms do sound ms-ish, but also lyme-ish....sorry. Unfortunately these two diseases mimic each other. It's VERY difficult to dx either, but given that u've had an almost dx for lyme, i'd follow that for awhile at least. Have u been on any antibiotics?? I am kinda in u'r place too...lots of symptoms and no answers...but i've been tested and retested for lyme and each time it's neg without question. I'm sorry that i can't think of any suggestions for u other than waiting and watching. That seems to be all there is u can do until whatever it is makes it'self fully known. Do try to treat the symptoms tho. There is no reason to suffer if there is a med that can help. Take care and keep asking questions. Let us know how u'r doing friend.
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*


tory2457
Regular Member


Date Joined Jan 2007
Total Posts : 380
   Posted 8/17/2008 8:17 PM (GMT -6)   
rae599,

Sorry to hear you're feeling lousy. Maybe I can offer some advice to at least rule out Lyme disease. btw, I have MS and lyme disease, so although I'm not a pro nor doctor I've done my fair share of reading and learning about both diseases.

Lyme is difficult to diagnose from a testing point of view. Why? because there are 2 schools of thoughts on diagnosing. Lyme docs test but also clinically diagnosis lyme due to symptoms. Testing for lyme is unreliable and on top of that the criteria the CDC stipulates is very rarely meet. In order to test "positive" there has to be specific lyme bands in both the IgG and IgM. This gets complicated, but most of the sickest of us do in fact test negative...our immune systems are so bound up it can't recognize this bacteria. I had a negative lyme test as well, but I did have lyme specific bands that were positive. I began antibiotics and I did have a reaction called a Herxheimer and convinced me I was on the right tract.

I can recommend you google lyme and read all you can about why testing isn't black and white, and maybe post over on the lyme board for further discussion.

As for me and MS, I was diagnosed years ago, and was on a Disease Modifying Drug. I have lesions in my brain and spinal cord but am considered RRMS. I've been on antibiotics for the last 2 years and I don't have any new lesions and my symptoms are in "remission". Do I have lyme induced MS? Personally, I believe I do, but my bottom line is I don't feel as I'm no longer in control of my MS.

I wish you well and answers. Venting is a great relief, and thankfully we now have groups to find answers.
best tory

peaceintruth
New Member


Date Joined Aug 2008
Total Posts : 12
   Posted 8/20/2008 12:04 AM (GMT -6)   
tory - what antibiotics are you taking for your lyme?

tory2457
Regular Member


Date Joined Jan 2007
Total Posts : 380
   Posted 8/20/2008 7:20 PM (GMT -6)   
well, it's not an easy answer....I've been on different types. Minocycline is one and cyst buster abx. Tetracycline, Rifamphin, Plaquenil, Tindimax to name a few.

peaceintruth- Great name

tory2457
Regular Member


Date Joined Jan 2007
Total Posts : 380
   Posted 8/20/2008 7:34 PM (GMT -6)   
peaceintruth

I noticed your other posts and read a bit about you. I wish you well. Like you, I had numbness on my left side along with losing coordination in my hand (and I'm left handed). Luckily for me after a bout of steroids I returned to full function. It was my 2nd "episode" so my neuros decided it was time for MRI's which then led to my MS diagnosis.

I've heard good things about LDN from other MS'ers; personally I don't know anything about it, but I have to say I really do like hearing you're on Doxy. Interesting that you have Mycoplasma, but I'm not shocked since it's on of the many Tick Borne Diseases. Are you looking into further testing or additional antibiotic use?

best tory

peaceintruth
New Member


Date Joined Aug 2008
Total Posts : 12
   Posted 8/20/2008 9:05 PM (GMT -6)   
Thanks Tory. I'm considering further testing since I did have Lyme disease back in the early 90's that I believe was successfully treated but I know that there are a lot of other diseases carried by ticks. My naturopath has done a lot of research on MS and there is quite a bit of research showing over 80% of people with MS have multiple viral and bacterial intracellular infections. Autoimmunity may not be that at all, it may be our immune system is working properly but the invader is hiding inside our cells and the immune system has to kill the good to destroy the bad. I've never been comfortable with the "your body just forgot what it's own cells look like" explanation. I've been researching the Wheldon protocol and the Vanderbilt protocol and they both call for several anti-bacterial/anti-viral drugs used concurrently and pulses of stronger drugs.

Also, the Canadians have just launched a large study on the use of minocycline in MS. Apparently, the tetracyclines - especially doxy and mino - have strong nueroprotective properties. This was probably the reason for the success of the minocycline w/betaseron trial. Some researchers believe minocycline or doxycycline alone can provide substantial nuerological protection without the interferons. I just don't know at this point whether my sudden improvement in nuerological symptoms is from getting the mycoplasma under control or some other effects of the doxy.

Why did you switch to different antibiotics? Did you have a reaction to some or is it a specific protocol you're following?

Peace and Good Health

tory2457
Regular Member


Date Joined Jan 2007
Total Posts : 380
   Posted 8/21/2008 12:32 PM (GMT -6)   
Sounds like you're doing the right thing by researching and asking questions. In my case, a relative was diagnosed with MS and I just kept telling myself it had to be lyme disease. I always read how many symptoms were similar yet for myself I never investigated looking at TBD. Anyway, I scoured the internet and both of us started the CAP program then found a lyme doc, got tested and here we are both doing very well.

I do know that getting rid of lyme is very difficult, so perhaps you could still have some of the critters lingering around? There are so many strains of lyme throughout the world and then so many co-infections such as Mycoplasma, Bartonella, Babasiosis, Erhlichica, Rocky Mountain Spotted Fever and the list goes on.

My doc specifically mixes up the antibiotics -another words he treats for lyme and the co-infections. He is aware of the Vanderbilt protocol and actually spoke with Dr Stratton. He believes that Cpn is a co-infection, and does treat for that as well. I haven't had any new lesions and many of my lesions have lightened/ gone away. This after over 20 yrs of diagnosis.

My wish is that more Mino/MS studies are conducted, but my biggest wish is that testing for lyme would be re-written. Too much politics surrounds this disease, and we must get better testing and informed doctors regarding this pandemic.

Personally, just in my family alone, lyme has touched them and for years they suffered with different autoimmune diseases with no real hope of solutions. Some had Fibro, Sojgren's, IBS, Asthma, Chronic Fatigue.

I never had a reaction to the antibiotics, but I have in my past had unexplained rashes with some abx I was given for different things. Funny, I'd get these rashes..but I simply took all the abx as pescribed. I've since learned that I was reacting to the abx.

You're correct regarding the intracellular infections...they are buggers to eradicate. I think the most important thing I've learned is: No longer do I keep my immune system suppressed, I do all I can to revive it up, to help it recognize the disease and fight it. That's the key to successful lyme treatment, getting my immune system strong enough to fight this.

It's been great sharing, but perhaps you might want to ask some questions on lymenetdotorg. Lots to read there and lots of people offering their thoughts. I will do my best to share what I know, but I found reaching out, asking tons of questions was a big help to me.

tory

peaceintruth
New Member


Date Joined Aug 2008
Total Posts : 12
   Posted 8/21/2008 4:00 PM (GMT -6)   
Tory,

Thanks for all the great info. I will head over to the Lyme board and do some research. The idea of an intracellular infection just came up for me a few months ago and I'm still trying to get a handle on it. It makes more sense in terms of "autoimmune" disease than anything else I've heard so far. As far as suppressing the immune system, I decided right away to not use any of the immune suppressing DMD's because there was so little evidence that I could find supporting the theory of an "overactive" immune system. More like a dysfunctional immune system needing regulation, not suppression. That's where my nuero and I parted company. I wanted to dig and find out all of the places where my body was not properly functioning - get in all the things that should be there but are missing and get out all the things that shouldn't be there (like mercury and mycoplasmas.) He told me no way - I head up the largest MS clinic in the Pacific Northwest and patients do things my way. So that was that. Still a little taken aback by his attitude but it worked out anyway.

But the conundrum for me is: am I a person with MS and and opportunistic infection or a person with a mycoplasma infection that mimics MS. My naturopath is not an expert in either - he's learning along with me. What did it feel like to you as your Lyme disease was being brought under control? How did your "MS" symptoms react? I had an immediate reduction in symptoms but have had several mild flare-ups of some symptoms. My tremors, which I'd had since my attack last year, were gone after the first several days on antibiotics and have not returned. They were the most public symptom of my disease, and the most worrisome so I'm overjoyed to have them out of the way for two months.

Thanks for all the info you've posted so far and if there is anything else you can pass on I would love to hear it.

Peace and Good Health

tory2457
Regular Member


Date Joined Jan 2007
Total Posts : 380
   Posted 8/21/2008 7:00 PM (GMT -6)   
Great question you ask, I too asked the same over and over. When I decided to get tested I figured my body would give me answers. In fact it did. I had past symptoms return although not nearly as severe and eventually went away. Things like numbness, trigeminal neuralgia, Lhermitte's. I've had a numb left foot for years and that's now resolved. It appears as if you too are bringing symptoms to the surface.
So, was I misdiagnosed? are they one and the same? How am I to answer that. I have my own opinions so I find if there is one person who can find some answers and posting my story offers them options it's well worth it.

I must admit your doc has a lot of nerve insisting he does things his way. Who doc is sick? I'll never understand the extent of some docs egos. I have however talked to more than one MS'er that have similar stories as yours. I don't understand their limited scope. There's a lyme doc in the Pacific Northwest that says he has yet to treat a MS patient that doesn't have lyme disease, go figure.

Here's a few more places to visit: iladsdotorg publichealthalertdotorg canlymedotcom.

Peace and Good Health to you as well.

popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted Yesterday 6:32 PM (GMT -6)   
Apparently pre MRI's they used to use the hot bath test. If your symptoms are worse after a hot bath you have MS. Though it sounds a bit random I was definitely worse after a hot bath could not walk hardly at all. I am convinced my Mum had MS all her life but when a child/teenager they dxed her with rheumatic fever so they never looked outside this box. When she did not respond to treatment they treated her as a hypochondriac. Only years later after she had died and I got MS did I find all her symptoms listed under MS. The dx is so difficult and complicated cos of all the other possibilities. I feel for you and hope you can find some answers or at least a caring doc.

peaceintruth
New Member


Date Joined Aug 2008
Total Posts : 12
   Posted Today 1:11 AM (GMT -6)   
Rae,

Have you had a cervical MRI? It sounds like some of your symptoms would more likely show up as a spinal lesion rather than a brain lesion. Even dizziness and balance problems can be linked to swelling in the spinal cord. My brain MRI came out clean but the cervical MRI showed a big lesion in my neck and swelling in my spinal cord. That won't sort out the MS/Lyme question but it may help you figure out what's causing your symptoms.

Also - have you had your Vitamin B-12 level checked? A B-12 deficiency can cause all the symptoms that you're having. Make sure your dr. knows the protocol for testing. There are three tests that need to be done to ensure a correct diagnosis. Some drs. will just give you an injection of B-12 to see if your symptoms temporarily improve but that doesn't give an accurate reading of where you're levels are.

Hope you get an accurate diagnosis soon so you can move on and do what needs to be done.
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