Lymes or MS??

I'm still in the midst of what I had/have is a lymes relapse or the starts of lymes..

Is head pressure EVER  a symptom of MS? I'm not talking about a headache/migraine. I'm talking a pressure that feels like a brain fog..

Also, the numbness in my foot and arm somewhat subsided, and my energy level improved so I attempted exercise on the stairmaster. My foot became numb again in the middle of doing the stairmaster and my arm also became somewhat numb again. The exercise also made me more dizzy afterwards..

Do these symptoms sound like the starts of MS or lymes???

Thanks,

Eleanor

Thanks Rhonda.
I didn't see much if any postings about head pressure and MS so I was wondering..
The pressure is inside my head. It does feel like a brain fog like your head is not attached to your body. I know that's a lyme's symtom, not sure if that's an MS symptom.

I wasn't sure if you heard about exercise bringing on numbness from MS.. It sounds like from your e-mail that it can be a trigger.

Thanks for your compassion,
Eleanor

Thanks.
I wonder if if that's true for lymes, though..

Eleanor

hi centralnjgal,

I too have MS. Was diagnosed in 1987, by 2 very distinguished MS specialists at a teaching hospital in Philly.

I decided not to post here because I don't ever mean to cause anyone to be uncomfortable with what I've learned regarding MS and my treatment.

but I thought I'd answer cnjgal because of her question. Here's my story:

I am now treating the cause of my MS with antibiotics, and am slowly beginning to feel better. One of my "symptoms" is head pressure and brain fog. I have always had MRI's -- brain, cervical, and thoracic with and without gladolium...I have lesions in both my brain and cervical spine. My initial symptom was severe nystagmus, I've had 2 bouts of ON, and I suffer off and on with Trigeminal Neuralgia. I have neck pain, floaters, L'Hermittes continuously, I lost coordination in my left hand, have a numb left foot and instep, very sore heels,tinnitus....but am considered benign! Really, all things came back to normal except the continuous L'Hermittes and my numb and tingly foot.

Yes, today I'm treating my MS with antibiotics and I could say I have Lyme Disease. IMO, multiple scaring or MS is a symptom, treating the cause of my MS is called Lyme Disease.
So do you have MS or Lyme? hmmm both?

Testing for Lyme is very flawed; and just like MS, it's a clinical diagnosis! I really recommend getting on a course of antibiotics for about 6 weeks; if you have a reaction to antibiotics....you harbor the bacteria. Testing is flawed because most of us test negative, due to our antibodies being so clumped together we don't recognize the bacteria. Our immune systems are really a sleep.

So, listen to your body and like so many others that have a MS diagnosis and are now treating with antibiotics; you too will to be on the road to recovery.

If I may njgal,,,I too experience and still experience a heightening of numbness etc when I get overheated when I exercise. Reason is the borrelia (the bugs) love it cold! and when we get hot they begin to die and it causes inflammation. I wonder if you've been taking your temp, if so, do you find it's under normal range? Again, a lot of us with MS do average 97.0. The bugs are winning, they keep us cool.

Is it possible that years ago you wern't treated long enough to eradicate the bacteria? Yes. This is a very insidious bacteria...

I really wish all here on this board health, we share a common disease. If I can influence just one person to read about lyme disease, that would make me smile.

BTW, as soon as I get my next set of MRI's and my lesions either are gone or almost gone, I do intend to re-visit my neurologist and share with him my success and treatment which lead to me beating this horrific disease! Educating our neurologists---- it's vital!

Best to all who read this, and if anyone has any questions, I'd be happy to do my best to answer them.
tory

I am in treatment since Nov '06. have been on different protocols..mixing things up.

I stared out with Doxy to see if in fact I would have a Herxheimer reaction. (that's the formal phrase of our bodies feeling like crap because of the antibiotics). Anyway, yes, I herxed! We all are different, so treatment is different for everyone.

What I can assume happened to you is you never were treated long enough. Borrelia along with all the co-infections associated with this bacteria hangs out inside our cells! Very tricky, very smart bugs. They replicate and steal the make up of the cell...they take over. Years of having this bug allows them to set up living quarters, and leaves our immune system incapable of fighting them off.

You need to work up to what is called cyst busting. the spirochete turns into a L form, a bleb and then a cyst form (intracelluar). and this takes place within days-weeks of "initial" infection. It's for this very reason, that getting a spinal tap to determine if we have lyme is just WronG.
Spinals will never show the bacteria(spirochete) in the CNS...it already pleomorphed into a L, bleb, or cyst form. It's already inside our cells.

All of this has been researched, proven and published. Very disheartening to know that not many docs and that includes ID docs have this info. I can assure you, if you continue with a ID you will more than likely be told you don't have lyme.....Lyme is a clinical diagnosis, like MS is.
I would recommend you find a doc who is familiar with lyme. they are called lyme literate medical doctors.

I think I mentioned I was tested through IgeneX and have a Negative test result in both IgG and IgM. I do however have lyme specific bands that came back positive. The CDC has requirements that state you need a specific number of bands positive to have a positive test result! Even though they state on their website NOT to use testing as a diagnosis! Very misleading to most PCP's and a perfect excuse for other doctors to say they are following CDC criteria.

Hense, all the underdiagnosed sufferers of diseases that mimic lyme and all the symptoms of lyme!

So, to finally answer your question: I was on Minocycline and Difulcan for a while, then Mino, Azithromax, and Mepron, I will soon start, Mino, Rifampin, and Tindamax. Sounds like a potent cocktail, but it's what is necessary to rid myself of this bacteria I've had for 20 yrs.

I can also say with assurance that although antibiotics are drugs, I am far better served than any steroid treatment I agreed with over the years. I shudder at the times my neuro told me he was giving me steroids to shut down my entire immune system....OUCH! I know today that that is the very worst thing I could have done. I needed to stimulate and help pump up my immune system....gone now are the days of being told, Don't do anything to stimulate your immune system...I take all the supplements I can to yes, help my poor sleeping overwhelmed immune system. These antibiotics will eventually do just that, and then my immune system will be up and runniing and it will ON it OWN fight of this bacteria.

I hope I helped, hang in there and read all you can about the similarities of Lyme and MS.

I wish all who suffer from MS to also become educated on the "cause" of their disease.

Hey centralnjgal,
Why don't you come over to the lyme board to talk about lyme symptoms? I just don't want to inundate the MS board here with talk about lyme. It does sound like what you're experiencing could really be symptoms of either lyme or MS. Yes, with lyme you tend to feel worse after exercise or in the heat, as increasing your body temp can cause a Jarisch-Herxheimer reaction (a "herx"). It is very possible that you were initially undertreated for your lyme. That's what happened to me...Caught it at the beginning, had it undertreated by my GP, got progressively sicker for 4 years, finally saw a lyme specialist, and am now almost entirely better. There's lots of advice we could give you on the lyme board (particularly regarding seeing an infectious disease specialist...they are notoriously againsts diagnosing and treating long-term lyme).

Hi centralnjgal

I can appreciarte your confusion, as I am someone who has been dx with MS 7 years ago and now treating for lyme.  It is hard to know what we are dealing with.  Even the Drs can not give definitive dx and treatment.  It's frustrating.

What is the cause of your symptoms?  You have to be your own advocate.  I relied on the many neuros I saw and they gave me their pat answers and guess what they were wrong.  I am sorry I did not advocate more strongly for myself at the time but I can not get that time back. I hope by encouraging others to do so it will help someone.  

Since you had lyme at one time it is only reasonable to investigate that possibility.  I know lyme can hide out for a long time (dormant) and return when the conditions are favorable for the bacteria.  From symptoms I have had and some now going away I can tell I have had lyme for a very long time (20+ years).  I was always an exerciser and ate well and probabally able to keep it in check for a long time. 

Feel free to e-mail me.  We can compare notes, and since we live in the same area I can recommend Drs if you want.

Eleanor

You can click the envelope icon under my name to send an e-mail.  I'm not sure what other way you mean.    

Ooh.. that will be interesting to watch. Please keep us informed, so I can let my mom and family know. They think I'm crazy for suggesting MS *could* be Lyme. LOL