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The dreaded Lyme VS. MS debate..>HELP

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Posted 6/20/2009 4:09 PM (GMT 0)
Hello Lymies,

Its been six months since I've been on the board...my boyfriend has Lyme...and now yet again, the MS debate has come back on the table...GOD its confusing!!

Heres a recap of my story:

  

My boyfriend, Mike was diagnosed with Lyme disease at 17, from a bulls eye, treated with 28 days of doxy and never had another problem with it again. ten years later, (almost three years ago) he started developing headaches that just seemed to never go away. in search of answers he began exploring doctors and medications in the hopes that anything would help take away this never ending headache. We have been in and out of 8 hospitals since , with over 10 hospital stays because we were unaware of what this could be. MRIs revealed a ring enhanced lesion which six months ago after doing another MRI was no longer ring enhanced or active which I believe is a great improvement. If antibiotics can help improve brain lesions that that must be a good thing which I’m not sure that can help with MS.We begged many doctors to test for lyme and when they finally did, and sent the blood out to Stonybrook, his test came back postive for lyme and it was in both his blood and his spinal fluid. we were recommended to see Pat Coyle in stonybrook where she prescribed him 30 days of IV rocephin and diagnosed him with Neuro Lyme.Around day 9 he hurxed and we brought him to Franklin General Hospital unaware of what it was, he was thought to be allergic to the rocephin, only later did we find out that was a good thing and put him back on it to finsh the rest of his 30 days. In the midst of being treated for lyme disease we saw many different neurologists all of who thought this was MS. but we had the same problem with MS, he had headaches, and MS doesnt cause headaches. Aware that there are many doctors who do not know much about lyme we kept searching for answers and i have  used forums and internet boards to learn as much as i could about lyme disease, and MS. Six months ago my boyfriend, Mike could not touch the top of his head because he was that inflammed, now im glad to say he can. Although i wish that was the end of the story. Five months ago he developed Optic Neuritis in his eye and we immediately brought him to Columbia Hospital in the NY city, hoping that perhaps there would be a better Lyme doctor there to help us with what was going on. Quite the opposite happen actually, the neurology team told us that a lyme doctor was not needed simply because “ they would just say it was lyme” imagine how frustrating that is. We’ll we experienced anything but a lovely time at Columbia, but at any rate he was prescribed IV Steriods which begin releaving the inflammation behind his eyes and his eyesight started to improve, its not100 percent but its pretty close and we havent had a problem with his eyes since. my worry with his being on steriods was high, knowing that he still has lyme disease but they insisted and to be honest, i was so worried about him getting his eye sight back that i didnt disagree. his symptoms are classic, theres not many symptoms of lyme that he doesnt have, but yet they are also symptoms of MS. 

 We have seen a few MS doctor, and just like the rest of them, they believe that after 30 days of treatment,lyme is cured and it can no longer be on the table.

 He became depressed, which we began treating, his fatigue has since went away, and i finally have my boyfriend back. we have no current symtoms, headaches here and there, but nothing out of the ordinary

 

Yesterday, we followed up with another doctor, who has since then brought MS back on the table, and says he could have both and we should start treating MS...he has no symtoms tho??

he had optic neuritis, or rather a loss of sight in an eye, it could be both...he had a ring enhanced lesion, that im told has gone away, so without lesions how is it MS?

 

 

im sooo confused, and so worried, i dont wnat it to be either, i dont want to not treat MS if infact it is that and it gets worse...but its been over a year since they have been throwing this Diagnosis around...if it was MS, shouldnt he be worse? shouldnt things have changed?

 

PLEASE HELP.

 whats the right thing to do?

how do you make a decision?

 

My feeling is the llmd will always call it lyme and the MS dr will always call it MS..so whos right?

 

Thanks in advance,

 

Amanda

Post Edited (AmandaC) : 6/20/2009 10:14:06 AM (GMT-6)

Posted 6/20/2009 5:08 PM (GMT 0)
Your boyfriend is lucky to have such a caring engaged and involved girlfriend! You must be a match made in heaven.

Anyways, treat both and pray for the best. Also pray for guidance as far as the direction you need to go in.

It's all one can do in a quandary of this nature. And Lyme is a quandary; if Lyme is anything, that's what it is.

If it's MS and caught early. they have some awesome research going on in this area I recall.

If it's Lyme, he's lucky to be a guy. They fare much much better than women best I can tell. And so I've been told. 90% of the guys here go home cured and the women are the lucky ones (not) who hang around
Posted 6/20/2009 5:24 PM (GMT 0)
but how do i know which one it is? we treated the lyme, and finally things went away

i thought it was over, or semi over and prayed it just wouldnt come back

we thought it would be wise to follow up with another dr for another opinion and shes calling it both, or rather just MS because some of his spinal taps came back negative....im frustrated

in a perfect world i would want it to be neither

but how do i figure out whether to treat the MS or hold of...if shes right, and we hold off maybe hell get worse

but theyve been calling it ms for ove ra year and nothing has progressed...so now what?

its a terribly confusing situation...with no answers.

and sometimes i wonder, not that i wish this on anyone, at all...when you have cancer, they do tests, and poof, this is what you have...its a definate, theres no maybe, its not its cancer or its 20 other things..with lyme, i know its not that simple...

to be honest, im scared out of my mind...what deicisons the right one to make?
if we start MS treatment and he doenst have MS, will we ever really know?
what are these medicines going to do to him if he in fact doesnt have it?

its just such a confusion decision.
Posted 6/20/2009 6:20 PM (GMT 0)
I will tell you this research has shown that Lyme causes MS, Pasrkinsons, ALS, Alzheimers , and other diseases of unknown origin. Ask the doc who suggests it is MS what is causing the MS they will tell you they dont know.
Here is an explaination of why Lyme causes Ms. Lyme Borrelia Burgdorferi swims through the body emitting a gassious halo this halo is what is called a neurotoxin. The neurotoxin moves to fatty tissues like the nerve sheath , lungs, brain, etc it damages whatever it comes in contact with. MS is the damage of the nerve sheath interrupting signals to the brain right. I believe that MS does not stand alone they cannot give you an explaination of what causes the nerve sheath damage but the Lyme Docs have given us this one. Take it or leave it. I bellieve treating for Lyme is treating for MS.
Also steroids may have provided initial relief but it weakens the immune system and later on symptoms could be worse that before because of it this has bee my experience.
And also once you get to a good place after IV terapy you are not cured you need maintanence antibiotics because the spirochetes are resistent also you could be coinfected. After rocephin which only kills lyme in spirochete form , you need other antibiotics to kill the L-form and the cyst form different antibiotiocs kill different life cycle forms of the BB. You should find a lyme md and stick w them bring your positive test results.
email [email protected] tell what area u need a lyme, u get a email back of ones nearest u.
Posted 6/20/2009 6:54 PM (GMT 0)
Fantastic Girlfriend, Amanda,

Well, I don't understand all the scientific stuff that Veromia does, and I will not claim to have researched MS. But my understanding is that it is believed that MS is originally caused by a virus. And I don't believe they know everything about the 'virus' -- whether it's a certain virus or whether other viruses can 'set off' (lyme loss of words...) the MS somehow by affecting the immune system.

Again, I have not researched MS, but Veromia, I want to ask you about this for the very reason that I haven't researched it: My ex-husband's grandmother died of MS. (say, close to 50 years ago) As a pre-teen he had to care for her and feed her. He grew up in fear of inheriting MS because he said it was a genetic disease. At one point he went to the hospital for MRIs, etc because he feared he was getting it. We're no longer together, but he is now in his late 50s and has no signs of MS. Neither does anyone else in his family that I know of.

I understand that many people diagnosed w/ MS actually have Lyme. Could it be possible that Lyme is ONE OF the viruses that can eventually cause MS? Or do we know more about MS than that?
Posted 6/20/2009 7:28 PM (GMT 0)
Well + lyme Lyme borrelia burdorferi is a bacteria not a virus. MS is said to be caused by bacteria or a virus producing an autoimmune response. Which is just one scenario thought to cause it. But it is showing that it is a main scenario. It is possible that your mother in law had lyme.. I didnt think it was genetic I think it is one of those that they say is predisposed and something makes it come out.
Yes Lyme bacteria can cause MS Lyme bacteria produce gas which damages a nerve's cover , which is what MS is Damaged nerve covering.
Posted 6/20/2009 7:38 PM (GMT 0)
thanks, V. Then I guess a 'genetic predisposition' would make sense too.

As for Amanda's boyfriend, I agree that he definitely should start w/ Lyme treatment vs MS. He had a very definite positive Lyme diagnosis. Improvement w/ abx definitely supports that too.
Posted 6/20/2009 10:53 PM (GMT 0)
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Posted 6/20/2009 11:13 PM (GMT 0)
Vitamin B12 deficiency can also lead to damaged nerve sheaths, so that would be something to test for and rule out in this scenario as well.
Posted 6/22/2009 12:17 PM (GMT 0)
thanks everyone, ill keep it all in mind!
Posted 6/22/2009 4:51 PM (GMT 0)
Hi Amanda,
So glad to hear an update from you and to hear that Mike has made tremendous progress compared to so many months ago. Mike, I am grateful that your treatment resolved so many of your symptoms. You are at a challenging place; but..

Remember to go back through your time line now. The clinical and diagnostic facts are there for you. Had his Lyme results come back negative, it would be confusing; but the fact that he has had positive results from treating a positive Lyme diagnosis is tell tale.

As care giver-researchers of this disease, additional symptoms can throw a monkey wrench back on the plate.

Keep the steroid treatment in the back of your mind for future reference in the event of symptoms that cause question b/c of its reputation for disseminating the pathogen deeper into the tissue while serving as an anti-inflammatory.

Lyme literate training teaches that if MS related symptoms are resolved w/Lyme treatment, it was most likely that the culprit was the pathogen fueling the autoimmune response. We are all pre-genetically disposed to so much that we cannot possibly know until times such as these. But, now he knows his immune weakness.

Bridge Mike's treatment w/immune support under the care of a reputable Lyme physician (let us know if we can be of service there) and if Mike would like to be evaluated by one of our top ILAD neuro-Opthalmologists, send me an email and I will forward the info to you. If this were Heth and these were the remaining symptoms visually, this is where I would go next. A tomography is a valuable word picture of what is going on behind that optic nerve and perhaps in the brain lining.

It is difficult to differentially diagnose these auto-immune complications; but we have experts who are trained and successful at doing so. It is often one step at a time as the body is treated and then requires time to respond.

You are clearly saying that he is symptom free; which is very encouraging. No, Lyme doctors (at least the numbers of docs that I have had the priv. of communicating with) do not automatically default everyone into this type of thinking; that statement was rhetoric and unfounded as a rule. Most are very wise physicians-turned-scientists who are astute at differential diagnosis; they have a grasp on the complexities that manifest with a later dx and deeper dissemination. As science continues to emerge with this disease (and its latent politics which caused your most unpleasant experience at Columbia - sorry to have heard that!) - and as our wonderful researchers and molecular biologists, pathologists continue with their work, we will have clearer answers.

For now, if this were my situation, I would focus on integrative approach under the care of one who is wise amongst the wise, to strengthening that immune system to protect it fm another relapse and/or flare knowing that Mike now has a history with autoimmune. I was dx. w/MS in the 80s. Along came Heth in the 90s. Immune support is pivotal.

Blessings,
Sojourner
~d
Posted 9/18/2009 8:57 PM (GMT 0)
i've been told i have both, i was treated for several months with various abt's with very little results. i began feeling better a few months after stopping abt's but still have lingering neuro sx. vit d has made a big difference. i too feel the llmd will always say lyme and the neuro will say ms, just like the gastro said "hug" was from stomach nerves and my primary said chronic fatigue . my neuro has been tracking me with mri's and supposedly the lesions have gotten worse and are in the "right" place for ms, but i myself feel much better. so much info i have found is conflicting, just lab results, let alone subjective symptoms. some say the same results is lyme not ms and vice versa. i tested pos. for lyme, no co-infections. pos bands in csf, and flunked the evoked potentials. i know i'm rambling. i'm confused and overwhelmed, just thought i'd let you know.
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