still undiagnosed...diagnosed lyme not ms

[carolynvb]

Mild  smooth increased signal at the callosal septal interface on the saggital flair examination. single punctuate area of high intensity on FLAIR in the left centrum semi ovale is unchanged. A few additional areas of punctuate areas of high intensity at the grey white matter of the frontal lobes more inferiorily..

saggital sinus mildly distorted. saggital sinus is effaced but appears patent. (this is due to a meningioma which I had gamma knife on and is stable.

My questions are this... please can you tell me if with the above listed findings it seems that I am showing early signs of ms.  I have a lyme diagnosis , however have been receiving treatment and therefore feel new issues may mean I may have now ms as am extremely typical with symptoms.  Very difficult to discern when symptoms overlap.  I do not however want to leave untreated and allow to progress.  weakness, balance issues, pain in muscles and joints incontinence that appears when symptoms are exasserbated.  Cannot get a clear diagnosis.  LP was negative 2 years or so ago.  multiple neurological issues and genetic disposition that increases the chance of Ehlers Danlos ths was discussed by a leading genetic author although have not found anyone to follow up.  equilibrium issues, hip pain numbness, tingling particularly on the left side.  Eyesight issues and eyelid twitch that was ongoing for 3 years resolved and now is back.  Continual issues although essaserbation of symptoms with periods of lesser issues.
Please tell me who I can see that can reach a conclusion on this matter.  I am British/Italian in origin born in UK.  Aware lyme can mimic MS but do not want to rule out this as I mentioned I have treated continuously and am currently on IV Rocephin which leads me to believe that there is more to this than lyme as the antibiotics should have kept any new symptoms at bay.  Blurry vision, impaired speech sometimes all combined sometimes a few symptoms at once.  Pain level is excruciating in my legs and weakness is worsening.  the info is from the most recent MRI in the last month.  Possible that the  saggital sinus although appearing patent could cause any of these issues.  No lesions for over a year small punctuate not specific appeared as the condition increased. Pregnancy all symptoms almost resolved post pregnancy came back with vengence. please help.

[Deb61]

Why did your doctor diagnosis you with lyme disease in the first place?  Did you have positive Western Blot tests or something like that?  I've heard, though, that these tests may not be that all accurate and have to be repeated at least two times.

[Amyloo]

Hi,  I have a dx of MS, with an underlying Lyme disease infection.  I will help you in any way that I can; I too have been on IV Rocephin for seven months. (Not on it currently.)

I am treating with a couple of other abx at the moment, but am seriously considering going back on Copaxone as well.  It's a hard, complex ride.  I share many, many of your symptoms.  Send me a message if you'd like.  God bless you.

[wonko]

Hi, I have Lyme disease but was also worried about MS for a time due to brain lesions and a primarily neurological presentation.  My Lyme tests were all technically negative, but I've responded quite well to ongoing antibiotic therapy.

You state that you have more symptoms now than when you began therapy.  It is possible that you are experiencing Herxheimer reactions associated with Lyme and tick borne infection.  Basically, the die-off that occurs upon treatment makes you feel worse than before.  I had to get much worse for the better part of a year before I started to get better.

Your symptoms sound consistent with Lyme but of course there is a lot of overlap with other conditions, and between Lyme and the more common co-infections there are hundreds of symptoms and no one's presentation is the same.

Lyme can be very difficult to diagnose and treat in late cases.  If you have other questions about Lyme, please feel free to visit us on the Lyme forum:

http://www.medhelp.org/forums/Lyme-Disease/show/148

I would also suggest searching for the ILADS (International Lyme And Associated Diseases Society) website and looking for the book "Cure Unknown" by P. Weintraub and the movie "Under Our Skin."  Both the book & movie have websites with a lot of online content.

Good luck & take care.

[carolynvb]

I was diagnosed with lyme over 3 years ago clinical diagnosis first took over 10 tests before positive test and 14 docs.  The symptoms overlap and so it is difficult and I am aware of the fact that there have been accounts of lesions disappearing following abx.  Unfortunately for me this has not been the case and therefore it is suspected I may have both. I am on IV again for the second time.  Live blood still shows spirochetes and despite being on abx when I had my surprise pregnancy my 20 month old has just had some live blood work and to my despair there are spirochete  like bacteria amongst other things so.... I am waiting to have him tested with the conventional methods that are required.   The mri mentions some new findings primarily the mention of the first part of my question.  I hoped someone could tell me if that is a common finding in ms...
Lyme has been a living hell and I guess depending on genetic disposition it can lead to MS especially as my pathogen was untreated for so long.  I beleived that the total cause was lyme but now as the damage continues I fear that the dr's including the lyme dr might be right and i may be dealing with a double issue :(  Also findings of genetic traits leave me wondering if there could be an involvement with Ehlers Danlos....sounds crazy but I have many friends who are microbiologists and Drs and each have researched quite a lot but there are no definitive diagnosis other than lyme.  I have watched under our skin and attend many conferences and am part of lyme groups but cannot rule out MS at this point....take care..

[sllowe]

Hi again,

Confusing indeed and I'm sure you just want some normalcy. Sorry the dosing schedule for lymes hasn't done the trick.  I know where I live it's certainly possible to have both - lots of ticks here. Have you reached out to Amyloo?

Sorry to keep with the questions, but I have to ask -  are you under the care of a neuro? Who ordered the MRI?

-shell

[Quixotic1]

Hi, and welcome to the forum.  You arrive very well educated on the topic and bring some difficult questions - ones that I'm not sure anyone could answer.

There is NO reason in the world that a person can't have MS and Lyme Disease.  There is nothing in either disease that would exclude the other.  However, telling them apart is a different matter as you clearly understand.

Like you I am concerned that you have new lesions appearing, however, it seems that you still have live active infection.

It seems that Lyme tends to exacerbate when the immune system is suppressed or compromised.  Thus, the counsel to avoid steroids if one has Lyme.  During pregnancy a woman's immune system is significantly suppressed so that she does not reject the fetus, half of whose DNA is "other" (father's).  In MS during this time of immune suppression, we typically see an improvement, sometimes a HUGE improvement in symptoms.  The symptoms return within a few months of delivery when the mother's immune activity returns to normal.

Now, I have heard that Lyme disease can often be worse during pregnancy.  This would make sense, but I do not know how true or common this is.

So, this made me think that you might, indeed, have MS also at work.  

I would think that another LP might help, as Lyme is "less" likely to cause O-Bands.  But, none of these are haed and fast.

Do you have a neuro who is willing to look at both problems?

Quix

[carolynvb]

I have decided to travel to NJ to a lyme loterate Neuro who will look at the complete picture hopefully. The doc here is over 90% sure MS also but is not willing to commit at this point.  I need resolution of course so I can take care ofthis before it progresses any further.  Already treating lyme via IV.  My MRI was ordered by my pcp altough I have to have regular MRIs to follow up on the radiation I had on the brain tumor so I have been able to follow the MRI process every 6 months or so and that is why I am so up to date on changes... the increased signals on the first line are the new findings plus the new non specific lesions is this a common finding in ms? they are not big enough for ms but does anyone know what the increased signals are indicative of as I feel like there have been some significant neurological changes lately that are not the norm...thanks "  Dr Rhee is in NJ and I am in VB anyone familiar with him?

[patientx]

I don't have much to add, but one thing you mentioned raises a question in my mind.  You wrote about a "live" blood test showing spirochetes in both your child and you.  I've never heard this term, and from what I understand, the B. Burgdorferi bacteria (which causes Lyme) is nearly impossible to culture from blood.  So, you wouldn't really see the spirochetes in the blood.  The blood lyme disease tests detect the presence of antibodies to the bacteria.

[carolynvb]

We have found a method used for a long time in Europe and used by some lyme docs to monitor the progress of patients. Most all offices had High powered microscopes until all blood was sent to major labs....now without certain specified crieteria Drs cannot use microscopy to diagnose.  I can tell you that You are able to see over an hour period the activity in the live blood. After 15 mins as the cells begin to die the bugs start to become active and you can see spirochete like bacteria, yeast buds, mycoplasma like, babesia like and bartonella like bacteria.  Patients not on abx who have found this in their blood through this method over 90% proved to have positive tests! that is more accurate than the WB!  takes min of 15 mins before you see activity then you see the activity.  The test is a good indicator the tests that follow are necessary, however lyme is a clinical diagnosis as the test is not gold standard and misses many infected.  The facts of this are well known and any methods that aid in diagnosis are a plus. As mentioned 10 tests before my positive test by which time damage done. The presence of antibodies in tests are a continuing joke to the lyme community knowing the nature of the bacteria and its ability to evade the immune system and testing especially when there has been the presence of antibiotics or even other drugs. Their ability to change form and produce cyst forms and biofilms. The whole lyme issue is controversial and far too heated for me right now being as not just myself  have gone through hell but now my child and husband have been diagnosed within the last week.  Lots of decisions to make.  MS is another wrench in the works. It becomes more evident the medical community have quite a ways to go with testing.  We have all suffered enough without diagnosis.  Hopefully when the IDSA make the final decision there is reasonable head amongst them as the past lyme panel well...as you know should be beyond red faced at being "Busted" for breach of anti trust laws.  Too many have suffered and lost their lives to this disease.  3 of my friends in the last 6 months....
Well hopefully someone has some answers on my MS questions.  I am sure the lyme board has lots of info on testing etc.  The method we recently have been using has proven very successful to date and is not a diagnosis it is an observation to be followed by further testing...To me for now it is enough until my family have been off meds long enough to pop a positive.  may take a while.......... hopefully not as long as it did for me.