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this LYME vs. MS debate is killing mee--PLEASE HELP

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Posted 6/20/2009 3:55 PM (GMT 0)
Hello all, I must say, I'm new to this board and was an old frequenter of the Lyme Board.

I guess we all have a story, ours is a little long, but i am begging for your help, your opinions and your guidance....

so here is mine:

 

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. Im petrafied that this is only going to get worse if we walk away from Lyme and begin treating something i know deep down its not. He became depressed, which we began treating, his fatigue has since went away, and i finally have my boyfriend back.

 

Yesterday we followed up with another  MS dr, 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, htat 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.

 

Thanks in advance,

 

Amanda



Post Edited (AmandaC) : 6/20/2009 10:13:35 AM (GMT-6)

Posted 6/20/2009 4:47 PM (GMT 0)
I am not sure where you got your info.  MS does cause headaches.  It increases your chances of suffering from migraines. http://ms.about.com/od/signssymptoms/a/headache_gen.htm

Apparently you have missed the great debates here and on the lyme board.  It can get very ugly so please step lightly.  From what you have written, it seems that you are convinced that your boyfriend suffers from lyme.  He did indeed get a diagnosis of neuro-lyme.  Neuro-lyme can cause brain lesions that look like MS lesions.  If he has herxed from abx and his lesions got better from antibiotics then go with that. 

I can't explain why he didn't get worse from the steroids.  Steroids are supposed to be horrible to lyme patients.  No one understands chronic lyme.  Don't blame doctors if they are afraid to question the CDC.  Doctors are afraid to lose their licenses.  Until that changes, lyme will continue to be extremely controversial.  It is nearly impossible to cure it once it has gone to a chronic infection stage.  It can trigger other disease such as MS. 

BUT not all MS has been caused by lyme disease.  I don't have lyme disease but every few months someone from the lyme board comes here to tell us........."You should be treated for lyme.  There is no such thing as MS." 

Sorry if we are bit raw here, but that is how it is.  I have MS, I only have MS.  I am treating only MS.  I am doing very well just treating MS.  I use high dose IV steroids and I get better, not worse.  I have been on minocycline and doxycycline for various other infections  (upper resp, etc).  I have never herxed.  Those would be indicators that I have had lyme. 

I am very sorry you and your boyfriend have been caught up in the MS/lyme controversy.  Your mind seems to already be made up from how you have described the neurologists.  Your boyfriend (like all of us) has to go with your own beliefs.  You seem to feel this is lyme.  Treat the lyme.  I hope he feels better real soon.  I wish you both the very best of luck.

Posted 6/20/2009 5:18 PM (GMT 0)
Gretchen,

Maybe you took what i said the wrong way, every lyme dr has said its lyme, every ms dr, has called it MS...how do you treat that? who do you choose? whos got the right answer?

his lyme was treated and hes in good shape, so it should be over? or so i thought....but it seems it isnt yet over..

I'm not sure what to do or what to believe so i came here looking for help and answers so that we can make the best decision and figure out whats wrong...but what do you do when its a split decison... when everyone points you somewhere else

could he have both? yes im sure, but why treat MS if its lyme, and why treat lyme again if its MS? or how are we supposed to know which to treat?

they present themselves so similarly in some cases that i understand it is hard to determine, but do i want him to b treated with MS medication if he doesnt have MS? obviously not...and at the same point, i dont wnat it to get worse because we have ignored it...

I have been through a horrible lyme/MS battle for the past three years of my relationship, i walked into this blindsighted and thought it would never end..

when he started feeling better, and the headache that lasted 2 years went away, i thought it was over, that maybe it just went away, and that i could continue to build our future together and not have to worry every 20 seconds about how he was feeling, how intense the head pain was or if he was going to get out of bed that day.


Im not saying there is no such thing as MS...but how do i know that this is really what it is?
a MS dr may look at his MRI and say, yes you had a lesion, thats symptomatic with MS, and the LLMD says, oh a lesion, its from the lyme.


i hope you understand where im coming from, because from reading your above post, it seems you have the wrong idea as to why i came here...
Posted 6/20/2009 7:00 PM (GMT 0)
Amanda,

I am sorry.  I have trouble not getting upset when we have lymers post here.  It has been really ugly in the past.  I didn't mean to take it out on you.  I don't have any answers which is what I was trying to say (so poorly).  It is not all that uncommon for two different doctors to come up with two different diagnosises.  It happens all the time.  I am saying, your boyfriend can decide for himself. 

All I can do is tell you what I would do.  I would continue to see both doctors.  The treatments can be opposing but there are lots of treatments for both MS and lyme that he can take at the same time.  There is no reason why he can't take a long course of oral antibiotics such a s doxycycline or minocycline as well as a progression treatment for MS such as copaxone for the MS.  I would have avoid the steriods if I could.  If the doctors are conflicted, then don't tell the MS doctor that you are seeing a llmd and vice versus.  I would do my research and treat both.  Just avoid the treatments that are contra-indicated for the other disease. 

It really does appear that your boyfriend may have contracted MS induced lyme.  If that is so then he can possibly treat the lyme, however, the MS may be permanent.  It seems that once the autoimmune dysfunction begins, it seems impossible to turn off. 

I am sorry I was a bit nasty.  I just get defensive when others come here with the possibility of telling me that I don't have MS.  It has been a long hard road to adjusting to a incurable, progressive disease. 

Please feel free to ask as many questions as you wish in your search for answers.  I do honestly wish you the very best of luck.  Just remember that the way lyme is right now (virtually and tragically unrecognized as a chronic disease by the cdc) that you are one of the trailblazers that can change things.  You and your boyfriend will have to find your own way.  We will support you the best we can.

Posted 6/20/2009 9:44 PM (GMT 0)
im just so lost and confused, he had a ring enhanced lesion, its not there anymore
he suffered from optic neuritis, i kno that is a big MS symptom and he had headaches that have really went away.

ive read about ABC treatment with MS, does it always help?
if his reflexes and everything else are fine, perhaps they caught it early?

but what are the down sides to these medications, if you do not have MS, the long term harm?

Listen, ill tell you the truth, they both scare me, there is no better of the two, its not ill take ms over lyme or lyme over MS..id rather neither.

but a lot of questions are arising in my mind as to how to make the right decision.

i know MS is not 100% genetic, so if we have children, there at a large risk but its not guarenteed that they will have it?

i just dont know, the first step to take and i seem to be looking for a push from someone other then a dr...bc truth be told, sometimes there great...and sometimes i know if there saying things bc of the money involved in the drug industry or to help.
Posted 6/20/2009 9:55 PM (GMT 0)
I am sorry to hear you don't trust the medical field.  It has been a god-send for me.  I have nothing but commendations for my doctors.  I have a wonderful team that listens and treats equally well.   I don't believe in the theory that doctors want to keep people sick so they can make money on pharmaceutical kick backs.  My doctor has not encouraged one med over another.  She laid those ABC drugs out for me and let me make the decision, including the decision to NOT take one. 

I am not convinced that anyone of us can fight a chronic illness like MS or Lyme without them.  If that is your plan then I really wish you good luck!!

One thing to remember, if Lyme indeed triggered MS, the MS is not curable by curing the lyme.  MS is an autoimmune disease.  It is like a dysfunctional switch, once flipped it does not flip back.  You will have to treat both if you have both. 

Posted 6/22/2009 1:38 AM (GMT 0)
Amanda,

A doctor friend once told me if you consult 100 drs you will get 100 diagnoses. How about trying some others? And do not tell them too much what the others have said. I have found you often just have to keep trying until you find one you like & trust.
Good luck.
Posted 2/5/2010 6:18 PM (GMT 0)
hi amanda, i've been given a dual diagnosis lyme and ms. feel your pain. pray and trust the answer i've done the abx's now i'm onto copaxone, i'm lucky to have a PA that helps me sort through the specialists data. it helps to have someone who isn't vested in the diagnosis.
Posted 2/5/2010 6:43 PM (GMT 0)
Hi Amanda,

I feel the same way you do. I was diagnosed as lyme several years ago. I did improve with abx therapy. However, alot of my symptoms have returned and I am thrown into the lyme/MS battle.

I also have several brain lesions. Lesions don't always indicate MS or Lyme. They can be from things such as migraines too.

I know it is frustrating. I am starting all over with a new neurologist.

Being in the land of not knowing is a terrible place to be.

As others have posted though don't fall into the trap of believing that all MS is really Lyme. That couldn't be farther from the truth.

It is possible that your boyfriend and myself did have lyme at one time and now are suffering from something else.

It is time for him to get a complete work up again. I know it is hard to go through but maybe you will get some answers.

I am on my 4th month of a 24/7 headache. I started the doctor merry go round again. Waiting on some results but trying to stay positive.

You and your boyfriend need to be your own advocates and find a doctor that you can trust and believe in.

Blessings to you, kitkat
Posted 2/5/2010 9:15 PM (GMT 0)
Hi Amanda,

Gretchen and the others have given you some great advice. It's really a shame that you and your boyfriend have been through so much....I just wanted to reiterate that the whole mess with Lyme and autoimmune diseases is terribly confusing, to everyone, including doctors.

I have Lyme disease, but I also have multiple autoimmune diseases. Genetically I'm predisposed to autoimmune disease....I just recently (within the past two years) realized this when I found out that two of my aunts died from lupus nephritis, my father had rheumatoid arthritis, another aunt has Hashimoto's thyroiditis...as does one of my daughters. Another of my daughters has SCLE. My niece has Graves disease. And three of my grandchildren have celiac disease.

So YES, I have Lyme, but not everything I have is due to Lyme! YES, Lyme can both trigger and mimic AI diseases as well as fibromyalgia. But, my rheumy, my PCP, my neurologist, my hepatologist and my LLMD (Lyme-Literate MD), all believe that I have Lyme PLUS other things....so I've been very lucky with all of my doctors. No one has tried to tell me "it's all Lyme" or "its all AI disease".

It is possible to have a Lyme relapse....there is some evidence that chronic Lyme never goes away, it just goes dormant. There are so many possibilities here, you really need to try to find a doctor who will listen to you and keep an open mind....someone who wants to help you get to the bottom of the issues and find out what's really going on.

I've just recently begun the treatment for Lyme disease; I've been under treatment for my AI diseases for nearly two years now. I get the impression that treating Lyme AND AI disease simultaneously is difficult, because prednisone and other immunosuppressants are good to take for AI disease but bad for Lyme. So I don't know what the future of my treatment will be, but I've been told that the goal is to eventually get me completely off the prednisone. I hate taking that stuff anyway, so that's a good thing, as long as getting off pred doesn't make my AI disorders flare up!

Well, this post is too long now....I wish you and your boyfriend the best! Please keep us posted!
JoAnn
Posted 2/17/2010 7:00 PM (GMT 0)
hello everyone

i have been gone for a long time, my boyfriend and I got engaged in July, the moment when things were actually looking better. since than we have taken a downward spiral all over again.

he was on an anti anxiety medicine and poof his headaches went away. when we came off of it bc of too many reasons to list his headaches came back and havent left

we have explored options- and keep hitting brick walls

and then theres him MS dr that stated again, that its MS and he should be treated

i think maybe im in denial, maybe im just so scared of what it could become that i keep pushing it away

he got a new MRI last week that shows white matter- not a new lesion-and it said something about post inflammatory something- not sure what it all meant as we havent seen the MS doctor yet.

part of me feels like going into MS treatment is almost like giving up- i want so much for it not to b that for him that it has to be something else.

today i told him its time to go on the medicine- see if it helps- these headaches are dibiliating and he just doesnt  want to get out of bed

is it possible to be diagnosed with MS from an MRI showing possiblities- a constant headache and he lost his eye sight a year and a half ago for abouth 3 weeks- since than its back to 100%

i wish it was easier- like a blood test- you take it and they can 100% tell you, that you have it.

gosh- i guessi just need a pat on the back, i know most of you come here and you are dealing with this yourself- hes just, well, he doesnt wanna deal with it, so most of it falls on me, and being okay for both of us- is so mentally exhausting i dont know how much more i can take.

and im scared- if we have children and he does have MS- will they get it?

thanks for all your support<3

Posted 3/5/2010 8:54 PM (GMT 0)
I too, am very confused about the similarities between MS and Lyme. I also have had the run
around between Doctors. Question: Are there any symptoms that are different? Even one that MS may get and not Lyme? Or vice versa??? If anyone knows please answer!
Posted 3/5/2010 9:02 PM (GMT 0)
Hi mother natures child,

Yes, there are ways to distinguish between them....although the tests are NOT perfect and many people get falsely negative blood tests, Lyme disease can be detected via blood tests. It may also be found in the spinal fluid...so a lumbar puncture can reveal Lyme. Another way to determine if Lyme disease is involved might be to try a course of antibiotics to see if anything changes. There is a certain reaction known as a "herx" that occurs when the Lyme spirochetes are dying and releasing toxins....a person will temporarily get worse when this happens. So I would guess that if you were on antibiotics and experienced a "herx" that this might indicate Lyme disease.

I hope this helps!
JoAnn
Posted 3/6/2010 12:24 AM (GMT 0)
Also, if you feel better after a long time on steroids or high dose steroids, then you might consider MS instead of Lyme Disease. 
Posted 8/3/2010 12:31 AM (GMT 0)
i shall throw caution to  the wind.\

My brother was diagnosed with lyme and MS two different drs sying two different things, he lives not knowing.  I did not know the different reactions to steroids so maybe he could try that to see.  Has anyone with MS ever received blood results showing the epstein barr virus to be very high, like 600? 

good luck to you and your boyfriend, he is lucky to have you.  I for one find all of the autoimmune diseases to have some overlap but I did not know the steroid response test, I had heard  about the antibiotic "test" but thats about it. 

Posted 8/23/2010 3:05 AM (GMT 0)
I would be happy to forward to you some interesting articles on lyme and MS. Son had very much the same story with lyme as your friend.
Posted 1/29/2011 6:17 PM (GMT 0)
Is it safe then to take Copaxone along with antibiotics for lyme? Or does the Copaxone alter the immune system to the extent that the lyme can then replicate freely again, as it does with steroids?

I've had neuros offer the Copaxone, but then back off because they didn't know what effect it would have on the existing lyme infection (yes, it's diagnosed by lab tests, not assumed).
Posted 1/30/2011 2:41 AM (GMT 0)
That's a good question.  I don't think anyone knows the answer to that.  I once asked my neurologist how copaxone works.  Her response was, "Well, let's see.  They think it works by.............."

They aren't completely sure.  Copaxone is said to be a immunomodulator.......not an immunosupressor.  I haven't seen any sort of increase in colds or other infections since being on it.

I would think you should aggressively treat the lyme.  Lyme seems life threatening compared to MS.  Many MSers don't take any disease modyfying meds.  Best of luck.

Posted 1/30/2011 4:01 PM (GMT 0)
huh... posted a reply, and it seems to have disappeared...

Lyme docs are wanting me to consult with MS docs, since this has turned very progressive and doesn't conform with typical TBD symptoms (if there really are any typical symptoms).

But, MS docs for the most part don't deal with underlying infections, they deal with controlling symptoms, so finding one who can help has become a challenge.

Also, with progressive symptoms, seems Copaxone may be pointless, since it's geared towards relapsing-remitting and has been shown to have limited success with progressive.

Has anyone used Copaxone for progressive symptoms with success?
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