Topic: Update on Optic Neuritis - poss MS secondary to Lyme - follow-up with regular Ophth
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Optic Neuritis- Has anyone had this?
Everything is very blurry & I can hardly read the screen. It's making it tough to do much research.
I would greatly appreciate any consolidated insight anyone can offer. "Don't worry, it will go away" would be VERY helpful too.
Thanks in advance. Ali
PS- I also posted a request in Seeking Doctors for a LL-Neuro Opthalmologist. If anyone knows of one I'd really appreciate your PM. TIA
[ 28. May 2008, 01:19 PM: Message edited by: AliG ]
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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canbravelyme
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Member # 9785
posted
Hi,
I had a long discussion via e-mail with Lymebob, and your situation (my situation) can be "dry eye".
Go see an optometrist. In my case, I have little lesions all over my eyes: like dry skin.
I was given eyedrops. Be sure to have the type suggested by an optometrist.
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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posted
private message sent!!!
Posts: 719 | From Delaware | Registered: Jan 2006
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Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939
posted
Ali
Sent you a PM. Hang in there. I know, as do many others, how frightening the vision issues can be.
I've gotten a lot of support from the good folks on here. You've got it too.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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posted
Hi Ali - no idea if this will help you, but it helped me. I did go to a neuro-opthalmologist when my eyes went bad like that, and he could find nothing wrong in his tests, even tho he had to anesthetize my eyes so I could even look at light.
The next day, my chiropractor suggested mangosteen juice. When I started the Ultra(70 minerals added) mangosteen juice, a couple ounces, slowly, with water, all eye symptoms cleared up in 24 hours, due to its being an anti-oxidant, anti-inflammatory juice.
Have you tried this juice? It's in healthfood stores, online, and strongest is Xango, sold multi-level.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Yes, I had optic neuritis a couple of months ago -- very very scary. What brought my vision back was acupuncture. I can't recommend it enough for this. It only took about 3-4 treatments, and my vision dramatically improved after the first treatment. If you do a Google search on optic neuritis/acupuncture, some information should come up about its efficacy.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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I'm sorry your going through this....very scarey stuff......
if you do want to try accupuncture.....there is a great one here in Point.....although researching is always a good idea...
I saw him for years....not for eye related problems.....but for pain...etc.
for me...my vision got better with treatment......still have some blurry days....but better with the antibiotics.....
mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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Background To describe the outcome in a patient with macular edema caused by Lyme disease treated with injection of 4 mg intravitreal triamcinolone.
Methods
The patient, 2 years after systemic Lyme disease treated with doxycycline for 4 weeks, developed macular edema with serous retinal detachment in one eye (visual acuity: 0.6).
After unsuccessful therapy with intravenous ceftriaxone, indomethacin and acetazolamide, 4 mg intravitreal triamcinolone (IVTA) was injected via the pars plana.
Results
Visual acuity improved to 1.0 and macular thickness recovered over 1 month. No changes were found in intraocular pressure. No recurrence of macular edema was seen after 2 years.
Conclusions
IVTA can restore visual acuity and reduce macular thickness in macular edema caused by Lyme disease. However, since borreliosis is a systemic disease, previous systemic antibiotic treatment is recommended.
Posts: 789 | From CT, | Registered: Jun 2006
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WildCondor
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posted
Your message box is full, I have a name for you...
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
AlliG..
IT WILL GO AWAY.
I've had it more times than I'd like to count... and it will go away.
I HIGHLY recommend the LLMD in PA for this situation.
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Thank you all for your input!
I'll have to come back to comment. My ophthalmologist just squeezed me in. He dilated my eyes & now I'm REALLY having a tough time seeing.
He wants me to go see his buddy, who's a Neuro-ophthalmologist in Philly @ Wills Eye Hospital. Has anyone had any experience positive/negative with Peter Savino MD?
I have a feeling that I REALLY need to go to the one in Lancaster. That's the impression I'm getting. I like my regular ophthalmologist & don't really want to insult him by dissing him on the referral.
Maybe I should reserve Lancaster MD for second opinion, if he comes up blank? Or is it possible that he could come up wrong?
I've had the inflammation for over 5 weeks now. I believe that it should have gotten better by 4 weeks. Does that sound right? I don't believe that I should have vision problems starting now.
My vision was unaffected when I was having the horrendous eye pain, which seems to be going away.
The Oph said the inflammation of the nerve looked the same to him today as it did on Friday. He also had a colleague take a look to confirm the inflammation.
Thanks Tincup for the "It will go away". I definitely needed that!
Wild Condor- I did make room for you. Sorry about my poor housekeeping
Thanks again to all who have been offering me help with this. I truly appreciate it!!!
Ali
[ 23. April 2008, 08:28 PM: Message edited by: AliG ]
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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Tincup
Honored Contributor (10K+ posts)
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posted
Go to Lancaster if you can. VERY important.
You won't be sorry! I'll guarentee it.
You can tell your regular doc this appt was sooner than one you could get at his other place.
PLUS.. I've seen patients in Lancaster who use to be patients at the place you are being referred to.
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
quote:Originally posted by Tincup:
PLUS.. I've seen patients in Lancaster who use to be patients at the place you are being referred to.
Thanks Tincup
That, right there, tells me it would be worth the extra three hours of driving. I have enough headaches of my own, I don't need to have a "lesser-informed" doctor adding to them.
My Opth told me that Savino should get me in within a week and he'll talk to them if they give me a problem. That would probably shoot my "earlier appt" excuse.
I guess I'll have to tell him that the other doctor was VERY highly recommended by several people AND I understand that they have MORE TICKS near Lancaster than in Philly.
Then again, if this does decide to go away on its own, it might actually be nothing to be concerned about.
Have you ever had a bout of this last more than five weeks and not cause any vision problems until the fifth week? I know I've periodically had the "stabbing pain in the eye" thing come & go, but it NEVER stayed around long enough to concern me and I never noticed any seemingly related visual disturbance.
My LLMD#1 just called & recommended that I call Wills Eye Hospital. (He's not ILADS. I'm guessing that an ILADS LLMD would likely recommend Lancaster)
CRAP!!!!!!!
Let's see.....I'm not on ABX and don't expect to have it reconsidered for AT LEAST 3 more months.......If my Tx has stalled @ 2 yrs post-most-recent-bites, perhaps it's time to jump the fence?
I think the reason I may not be on ABX is because LLMD#2 wants to determine if the ABX have caused the inflammation in my eye? I wish I could somehow know what these doctors are REALLY thinking. Oh how I wish I'd gone to medical school!!!!!! AArrrgggggghhhhhh!!!!!
I still trust LLMD#1 to always choose the lesser evil for the long run in my Tx. I hope my trust is not misplaced. I really believe that he is a brilliant, kind, caring, compassionate doctor and I KNOW he has a great understanding of these TBDs.
They've had other patients who were very happy with Wills, so maybe the difference between them and those that ended up going to Lancaster was the doctor they saw?
DANGNABBIT!!!!!! Why are there NO easy decisions for me? Everytime I think I figure something out, someone comes along & throws me a curveball!
I wish I could know what doctors at Wills left people seeking further attention elsewhere and/or which ones didn't.
*****************************
BTW-5/7 is on my calander & I have a ride agreed to, in case I can't see. I'll be making calls once I can get my latest disturbance under control.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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bpeck
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Member # 3235
posted
Hi Ali:
I had it and it's really nothing to ignore.
If you have good insurance- I'd see both Drs. Then you can decide which one you'd like to see a second time.
ARe you being treated for Lyme now? Are you using brain penetrating ABX?
If so, then be careful. I had to pulse (stop and start) my abx when I was using brain penetrating Abx becuase it made my myriad of eye symptoms worse.
If you have neuro-Lyme- then most of the bacteria will be in your tissues in your head - so just be carefull.
bpeck
Frequent Contributor (1K+ posts)
Member # 3235
posted
Hi again.. I just read your last post- and I agree with your Doc.
Yes- ABX can cause a worsening of eye symptoms - and I agree with him to suspend the ABX and get the eye condition undercontrol again.
It sounds to me like you have a LLMD that DOES understand what's going on.
In my personal experience with Lyme- I think it's the WRONG decision to contune ABX when some symptoms worsen- especially when you're talking about your sight.
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Thanks Barb for the reminder
This is why I am freaked out by the neuritis. I was on NO Lyme Txg ABX for 2 months (only Levaquin, for BLO, the month before last), befor ethat I was on a piddly dose of Zith for about 2 months (I think). 250 mgs/day was surely NOT enough to get good BBB penetration.
I think Zith needs to be IV or something to penetrate BBB (don't quote that, I could be pulling that one out of my butt I'd have to re-read the ILADS guidelines because I know the BBB penetration of Zith is mentioned there).
Whatever is going on HAS to be TBD related because IMO, I've been undertxd for Lyme since ending Rocephin in late December.
WHAT ON EARTH AM I DOING?????!!!!!! Why am I going along with this non-Tx?
I wonder if I can convince my lyme-illiterate PCP to give me referrals for BOTH neuro-Ophs. That would be ideal, since I doubt the known-LL one would be able to get me in very quickly. (Then again, you never know unless you try )
Thanks for giving me some more things I should definitely be considering!
Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
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posted
Barb - It looks like you were posting the second message at the same time I was responding to the first.
The Opth seemed to think it would have gone before now if it was the Levaquin. It started 3 weeks into a 4 week course and remained after a month of no ABX at all.
LLMD had said that, even though I'd only read about bi-lateral ON in Levaquin cases, perhaps it could start in one eye & end up in both further down the road. he didn't want to take that chance.
It's frustrating because Opth didn't think that it was the Levaquin & I WANT IT GONE NOW!!!!!! If it's the keets, I WANT TO KILL THEM!!!!!!!
I have no patience, I want them ALL dead & out of me NOW!!!!!!!!!!!!!! :cussing: ENOUGH IS ENOUGH ALREADY!!!!!!!
Maybe LLMD is right - Maybe OpthMD is right. Time to bring in another vote or two.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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posted
I have been to the eye doc in Lancaster and highly recommend him
I have not heard good things about Lyme and W.E. hosp in Philly, although that is all second hand. Good luck:)
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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posted
Plus the eye doc in Lanc was able to refer me to someone closer to me for treatment, so I only had to go once..
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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Tincup
Honored Contributor (10K+ posts)
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posted
Here is more pressure for you....
It is YOUR eyes.
They are not going to fry you because you chose a different LLMD eye doc to go to. They just want you to go and do it ASAP!
Not to be so concerned about being polite or hurting your docs feelings. That is always nice to consider but you need help NOW.. and my bet is the LLMD's don't know of the Lancaster doc. He isn't "out there" and keeps a low profile.
Call Lancaster.. and ask if you need a referral. If insurance doesn't require it.. just GO! Get the first appt they have available.
No more playing around. Make an appointment NOW.
Two things we NEVER mess with here. Eyes and heart.
So Nike!
"Just do it!"
Take the first appt ANYWHERE.. I don't care. Just Nike!
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Thanks for pushing me off of my indecisive, confused, procrastination.
WHAT HAPPENED TO "IT WILL GO AWAY"?!!!!
I got a little freaked out & called BOTH.
I called Wills - earliest appt the 13th. I took it for now & left message for OphMD, don't know if he'll get me in earlier.
I called Lancaster - earliest appt. is the 14th, I took that one too.
My insurance is changing May 1st. Wills DOESN'T accept the new insurance, but I was told that Lancaster does. How's that for an excuse? Surely that can not be taken personally!
So.... if I can't get in BEFORE the 1st, maybe better to JUST go to Lancaster, since earliest appt is within one day.
I "NIKED" and it looks like it may work itself out so that I don't end up causing hard feelings anywhere. I'm very thankful for all the little kicks in the butt about my hesitations.
I also realized yesterday that my memory/cognitive issues are getting bad again. It was four weeks, when I was SURE it was five ( ). It also occurred to me that I've had these symptoms of ON before, on a milder scale, and they DID go away during Tx.
The reason I'm so afraid is because I'm NOT being Txd and I believe that this has been the most severe and longest in duration that I've had them. I really wish I could do a course of Doxy and see if it goes away.
Then how could I truly know if it was the Doxy, or if it would have just gone anyway on it's own? I HATE THESE TBDS!!!!!!!!!!!!
Well at least I can feel like I'm doing SOMETHING to try to help myself now. I'm not just sitting back and taking whatever the ketes are dishing out. I can't imagine that I'd make it until July on a "wait & see" approach.
The LLMD had said something about looking "this" up, while he was reviewing my chart. He could have been referring to any number of things. I wish I thought to ask what it was that he intended to look up.
I really hate it when I leave & realize that I have NO idea what he's actually thinking. I don't like feeling "out of the loop" in my own Tx.
Oh well, I'm doing what I can for now.
Thanks again all for the support! Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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Just a friendly reminder -- seems like you are thinking Lyme is the culprit. I think Bart is more likely to cause eye problems and you said the problem started while on Levaquin.
Just a thought.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Thanks Bea.
Good point. I wonder, if it was Bart, would it have started over three weeks into the Levaquin?
Right now, I can't be sure I've beaten the Bart. I did have some of the Barty Sx come back after stopping Tx.
I do think it's safe to think I haven't gotten the Lyme, since I haven't even been Txing it while fighting with Bart. I don't believe that Levaquin touches Lyme.
Hmmm.......
Thanks for pointing that out!
Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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AliG
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Member # 9734
posted
Thanks TuTu!
I don't think it could be herx because it stuck. I finished the 30 days of Levaquin & it's been hanging on for over a month!
Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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suki444
Unregistered
posted
Hi there I got optic neuritis also and it was as if a dark shadow was over my eye...blues and reds appeared neon and I couldn't tell green and red apart - colour blind in that eye.
I took Mepron with 500mg Zith and Vitamin e to help the inflammation and gradually it resolved completely. I also took cholysteramine for neurotoxins after the antibiotics which may have helped.
Are you sure the diagnosis is optic neuritis and have seen a doc? Bartonella can cause it. The above worked for me and it usually resolves in most cases.
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Hmmmmm.....???
Thanks Emma!
I DID read that colorblindness can be a Sx of ON. Fortunately I don't believe I've had that(yet:bonk:).
My Ophth even had a second Ophth, from his office, take a look to confirm that my Optic nerve is most definitely inflamed. That was after the MRI, when the vision problems struck and I called him freaking out.
Your Mepron/Zith comment makes me wonder. I did have horrible photophobia, a couple of years ago, and I believe it resolved when I finally took the Babs down. The photophobia can be a Sx of ON.
I'm realizing now that, over thae past week or so, I've been having gastro Sx, nauseau, annorexia, SEVERE fatigue, many neuro Sx, the shoulder/neck/base of skull and rib pain and some headaches returning.
Could Txng the BLO with Levaquin, 3 days of very little sleep and adding in "the flu" have caused the Babs to recrudesce?
I think this might a question worthy of posing to LLMD(s).
Thoughts anyone?
[ 01. May 2008, 11:28 AM: Message edited by: AliG ]
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
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Member # 9734
posted
DR S appt tomorrow.
I just found out from my PCP that Horizon BC/BS/NJ considers Horizon BC/BS/PA "out of network" & therefore NOT COVERED!
I have no choice but to go, my vision is getting very bad AGAIN & I don't think I should wait for another 2-3 weeks to see who-knows-who in NJ.
This is going to TOTALLY stink having to pay out of pocket. If anyone prays, please pray for me that I am making the right decision and this 5+ hour round-trip, paying out-of-pocket, will be worth it.
I have to think that "all things happen for a reason" and I likely would have tried to go elsewhere, in NJ, if I had this knowledge sooner. I hope this is Someone's way of looking out for me because I could sure use some help.
Thank you everyone for all of your input! Let's hope this makes a difference in the course of my Tx (for the better! )
Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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posted
I'm praying you get the aswers that you need.
Let us know.
Gail
-------------------- Gail Posts: 234 | From Sterling, Ma | Registered: Jan 2008
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bettyg
Unregistered
posted
ali,
thanks for the update on yourself; yur sticking health insurance company.
when you come back; fight with them and involved your state's HEALTH INSURANCE COMMISSIONER's attorney.
ali, PRAYING for a safe, good meeting where dr. s. can help you get your eye sight back again. and for God finding a loophole so your appt. is PAID FOR by insurance companies!! Bettyg
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Tincup
Honored Contributor (10K+ posts)
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posted
Good for you going on the trip! And I wish you much luck. I believe it will be worth the trip... and I'd bet money on it.
But I think you made a mistake in that post you made last. The one about insurance not paying.
I believe you meant to say...
"They THINK they are not paying!"
They will pay. I think you can argue the point once you've seen the doc and get some results. Need help? Let me know.
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Thanks Gail. Betty & TC, for your support
I have made the trip. Dr.S was really very nice. He seems to be very knowledgeable.
I'm a little freaked out at the moment though, because he suspects "MS secondary to Lyme". I need to have an Evoked Visual Potential Test(?) and a Lumbar Puncture MOMMY!
I'm not sure Betty, but I think your "loophole" prayer may have worked! They took my co-pay & my insurance info, so I have to see if maybe it will go through by some miracle.
I'll have to keep praying until I found out if it was actually paid. If not, I'll have to get TC to help me figure out how to fight with them. Thanks for that TC It's so nice to know that I'll have you there if I need you.
I'm hoping Betty's way will work & I won't even need to fight with them. I'll take the loophole over a fight ANY DAY!!!!
Now back to praying that they find that single pill "magic-bullet" cure for all this before they can get me in for that Lumbar Puncture!
I DO NOT WANT A LUMBAR PUNCTURE!!!!!!! make it go away, make it go away, make it go away Somebody PLEASE make it go away!
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
PS- Heat makes it worse & can cause permanent damage so I have to avoid hot showers, baths, exercise except in a pool.
The heat making it worse thing is called Uhthoff's phenomenon. They actually used to Dx MS by putting people in a hot bath to raise their body temp and seeing if it caused an exacerbation of Sx.
THIS ROTS!!!!
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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bettyg
Unregistered
posted
....ali; on no!
i went to medlineplus.org, NIH's med library, and brought this up for you to read....
the board would NOT let post link something about a parenthesis in it that i could not see.
so when you get there, type in the name of the eye test they want you to have AND LUMBAR PRESSURE after it; it brought up 5 links of good info:
it was user friendly language in the 1st of 5 things that will show up there; i didn't look at the rest.
so sorry; what a shock to be told this! and the spinal tap! uffda big time! BUT if it will REVEAL SOMETHING DEFINITE to work with, then that is the good part regarding the painful part.
ali, you are in my prayers for finding out this is NOT true; you are dealing with other lyme things, and that God will give you a miracle to return your eyesight as I've been praying steadily for my close friend, ICESKATER, too! Betty
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AliG
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posted
Thanks for the info on the tests, Betty, and for the much needed & appreciated prayers.
It's something how they make the LP sound so simple & painless. I went through hell with the midline/PICC placement because of my nerve sensitivities. The anesthetic they injected even CAUSED me pain!
I am surely NOT looking forward to having a larger needle jammed into my spine.
They aren't going to stick needles INTO my head for the evoked potential are they? I found that a little confusing. They just attach them to my scalp with some kind of adhesive. Please tell me they aren't going to shave my head.
I think I need to go back & read more about the visual evoked potential.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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bettyg
Unregistered
posted
ali,
from what i remember reading in WEE AM HOURS, you just sit in front of a computer screen and they flash something up like a checker board, and they look into your eyes ... folks trained in this.
that's all i can remember on that one.
did read on spinal tap that if you laid flat out on tummy, it's not as painful as in fetus position. i don't envy you....you've definitely got my prayers.
someone else on board i think was going to your dr. TODAY...also lumbar. i refered poster to your post!!
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posted
Just be aware that the LP results won't definitively say you have or don't have MS. A finding of oligoclonal bands in your spinal fluid will lead most neurologists to diagnose MS - but they can just as easily dx by MRI brain/spine MRIs that show multiple lesions - therefore multiple sclerosis.
I would suggest doing some browsing on MS boards to see whether LP's are still routinely required, or just a hold over from pre-MRI days.
My husband had one last year for the same purpose, and it was not as traumatic he expected....but had we been as informed about MS before we wouldn't have had it done.
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Tincup
Honored Contributor (10K+ posts)
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posted
You did it! Good for you!
Now... I will tell you what I normally tell others.... but wouldn't tell you prior to you going.. as I couldn't drag you there and needed you to take taht leap.
GREAT doctor.... no doubt.. but LOVES to order tests to rule in/out anything and everything.
That is just dandy for a new patient looking for help and who doesn't know if they have Lyme or not.
BUT... it about makes folks nuts if they have been at this for a while.
Someone I know objected a bit to the tests that were ordered (didn't feel like doing all that and they had been do and was told they needed to do them just in case somehow a bullet was stuck in their brain that they didn't remember getting.
True story... but they WERE kidding about that part.... BUT...
Patients don't always go for tests due to appointment dates conflicting... or little to no insurance coverage, or they don't want to, etc.
My guess is you have to go back for a follow up appointment?
I have had 2 LPs. Not fun but not so bad either. They give you a shot to numb first and it really was pain free. The worst part was laying flat afterward for hours. The second time I did have a headache for a week. I never get headaches so it was annoying and uncomfortable but not so much painful.
What are they looking for? If they are looking for o-bands you can have these with Lyme too. You probably know chances are slim that Lyme will show up in spinal fluid. Nothing is definitive for MS either. Lyme, MS, or both, it is a mystery. Although most Drs are familar with and will dx MS vs Lyme.
I'm sorry I am not more familar with your story but in my case (and I may have MS in addition to Lyme that is the big ? with me) Lp was not definitive for anything. I would do all the other non evasive tests(evoked potentials, MRIs) first before doing the Lp which is invasive. I did not feel valuable info was gained and even though the Drs claimed Lyme was ruled out I now know that was incorrect.
Posts: 262 | From nj | Registered: Dec 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Sorry for the pause... phone calls.
I can't tell you what to do... but if it were me...
I would postpone the spinal tap until AFTER the next appointment.
IF at that time I felt any more friendly to getting it... then I would consider it... but there would have to be a SUPER good reason.. a reason beyond belief to make me do that.
ALL of the tests done on spinal fluid can be done other ways.. usually blood... with much better results. REMEMBER THAT!
It isn't something anyone will tell you voluntarily.
IF the tests comes back negative... 90 percent chance they will.... then you are stuck BIG TIME because insurance can use it against you and claim you don't have Lyme- or MS- so NO treatment and no follow up visits.
If it were me.. my explanation for not getting the spinal tap right away would be I wanted to see how the other tests came back BEFORE having an invasive, expensive and potentially dangerous test done that has a long history of failing and making things worse for patients... financially and other wise.
Also note...
The MS thing...
Sometimes Lyme, et al, can cause a presentation that looks like MS. After all, MS is a bunch of symptoms thrown together on a list. Plain and simple.
A man made up that list one day to fit what he was seeing in a few patients... and gave it a name.
By doing so.. anyone out there that they don't have a clue what is wrong with them... and if they have some of those symptoms.. they toss them in that category.
Since there is no known "cause" for what they call MS ... and folks do treat Lyme with antibiotics which helps the "MS-like symptoms"... the doctors often relate the two in a single diagnosis.. or kind of lump them together.
It doesn't mean you have 2 different diseases. NOT AT ALL.
You CAN get Lyme induced MS symptoms... and it is quite common to hear this news and to have this presentation... so don't freak.
You can also get Parkinson's-like induced symptoms... as well as ALS-like symptoms... as well as fibromyalgia-like symptoms... since Lyme can affect any and all organs and systems in the body.
Don't let the doctors do something for you, or to you, that you don't 100 percent want to have done.
As the kids would say...
"You're not the boss of me!"
YOu and ONLY you make those decisions. You have EVERY right in the world to have any tests or not... take any meds or not.. etc... and it is only THEIR opinions they give you for money.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I didn't see the other posts... till now... but NJ said..
"I would do all the other non evasive tests (evoked potentials, MRIs) first before doing the Lp which is invasive. I did not feel valuable info was gained and even though the Drs claimed Lyme was ruled out I now know that was incorrect."
quote:Originally posted by njgirl14: If they are looking for o-bands you can have these with Lyme too....... Nothing is definitive for MS either.
That was my thinking as well... but wasn't sure of it!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Cobweb
Unregistered
posted
Hey- wow- I missed all this-maybe I should have my eyes checked!
I can't offer any personal experience for this dilemma-my eyes aren't so good-but not to the degree you are experiencing.
I have had shooting pains in my right eye-like someone was jabbing a hat pin into it-but thankfully that has subsided.
The only time my eye sight really got blurry it freaked me out totally. Until I realized after a couple of days of doom and gloom that it was because my glasses had somehow become bent-so the alignment was off. DUH
Wish I had caught on to this thread earlier- I could have driven up to meet you and literally held your hand!
I'm actually in charge of the prayer list at church-so consider it done.
The hardest thing on my eyes is this darn computer!
sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
dear sweet Ali-
i'm so, so sorry to have missed this thread for so long.
i'm even sorrier to hear that the vision problems you mentioned on the phone awhile ago are still there and causing you even more grief.
I know every one and every situation is different, but i'm adding my vote to postpone (at least)the spinal tap.
i can't imagine why a brain mri isn't being done first. pre my Lyme diagnosis by a real doc, my PCP was absolutely convinced i had MS, and the FIRST test she ordered was a brain mri.
the mri returned showing NO lesions, which she said essentially eliminated MS as a diagnosis- WITHOUT ever doing a lumbar puncture.
i did do a LP later, as ordered by a llmd, but in retrospect i think he was wrong to have me do it, for all the reasons TinCup etc. have already mentioned.
if you decide to go for the LP anyway (i hope you don't!).. advice from top enchildas-
---take caffeine PILLS (such as no-doze) before or IMMEDIATELY following the procedure, and continue with them for at least the 1st day.
--when they say lie flat- THEY MEAN IT. don't even lift your head up if you can help it, and sitting up is a big, big no-no.
how much you are knocked down by a LP depends in part on how much fluid the dr. needs to draw.. just a bit, and lots of folks do great.
lots of the stuff?? don't wait too long to DEMAND the patch the doc will mention to you, if you are slammed hard. lasting pain afterwards is NOT ok.
lots of love to you..
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
If you do have the lumbar puncture (spinal tap), ask if they can do a "blood patch" right after they finish, the very same day.
IF they refuse, then Id suggest that you immediately lie down after the tap, and try to stay down for as long as possible to avoid the dreaded spinal headache.
I had that headache from it for 7 days!.. and the only way to get rid of it is to stay on your back for days, get the blood patch, or take caffeine and tylenol at the same time.
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- This topic has come up many times before. I've wondered, too, so did a lot of looking around. Here's what I posted a few months back. It's a lot, but I hope it helps . . . best, first, would be the Goldings' article.
Best of luck to you.
Ohh . . . if dry eyes . . . it really can be that dry eyes can make vision very painful and difficult.
Oh, and heat makes lyme worse, too, not just MS. Many other health conditions are worsened by heat, humidity and over exertion (which may not take much at all).
"MS" is often an umbrella dx, it simply states physical findings, not a cause or combination of causes - which can be various. Again, the Goldings' article below can help differentiate.
This is often done with dx work-ups for MS. You can choose to do this or not. Cautions:
If your doctors suggests doing a lumbar puncture (spinal tap) that is neither state of the art for diagnosing MS or lyme.
It's like a fishing expedition, as one poster here puts it. You might get a sample in the fluid sample, but maybe not. Does not mean nothing is there if not - and the test can be very painful, possibly requiring someone to help you out around the kitchen, etc. for a week and you being down for up to ten days afterward.
Some do okay, but many more are surprised by reactions. If you have this done, be sure to follow exactly - exactly - what they tell you about staying down for how long . . . and request a certain size needle.
You could do a separate thread about that, but best to have seen a LLMD and, if you decide to do this for whatever reason, at least also get their specifications and advice.
I don't have the quotes, but I think it's in the Tx Guidelines about how lumbar puncture has a very low margin of being any help diagnostically.
that would be at www.ilads.org ILADS - see Treatment Guidelines.
If that is not the place, someone else here should be able to come along and back up what I say with citations and medical authors' quotes. It's buried somewhere in my computer.
STEROID CAUTON:
Steroids are often a MS tx (treatment) and if steroids are suggested RX for you, be sure to consult a LLMD FIRST.
Steroids, without proper abx (antibiotics) can have a serious effect if lyme is present. In a life-threatening emergency, of course, it may be needed, but 48-hours prior abx administration is preferred when possible. Even cream and shots are cautioned against (especially if not on abx).
If you use a steroid inhaler, though, don't stop. Continue as you have been doing.
And if you currently take any kind of steroid, don't just stop. That would need to be done in a special manner, probably titrating, and best to be evaluated for lyme by an expert first.
But, if you are on none now and are not in an emergency situation, be very cautious. Steroids can make treating lyme extremely difficult.
[edited to add this note ABOUT STEROID EYE DROPS:
while steroids are generally contraindicated with lyme except in emergencies, occasionally, short term use of steroid EYEDROPS can be very helpful, &/or very necessary in certain situations where nothing else is as effective. With the proper guidance, LD pts have seen improvement. This could save vision in some cases. ]
Although the MRI procedure is very safe and generally easy to tolerate, because of the large magnetic field, patients should not get an MRI if they have implanted electrical or mechanical devices.
MRI scan of patient with lyme disease who has multiple sclerosis-like lesions
MRI captures the physical structure of the brain, unlike PET and SPECT, which reveal the functioning of the brain.
In neurologic Lyme Disease, approximately 15-45% of patients may have white matter hyperintensities.
These are sometimes also called UBOs or "unidentified bright objects". In some patients, antibiotic treatment results in a diminution or disappearance of these hyperintensities.
Certain MRI sequences are best able to detect hyperintensities; these include FLAIR sequences and Magnetization Transfer methods.
These MRI images in Lyme Disease may appear similar to the demyelinated areas seen in the "white matter" of the brain MRI of patients with multiple sclerosis.
The Patient as Diagnostician: How the Internet Helped an MS Patient Find Her True Diagnosis
by Ginger Savely, FNP-C
� LEGAL NOTICE:_All articles in the PHA publication are protected under U.S. Copyright laws._All articles belong to the AUTHORS and may not be copied, re-posted and/or forwarded or reprinted with out the expressed written permission of the author.
Chronic Lyme borreliosis at the root of multiple s...[Med Hypotheses. 2005] - PubMed Result (you might have to search by title at PubMed if this is not the link:
Antibiotics May Be Beneficial For Multiple Sclerosis
A preliminary study suggests that combining an interferon, a medication currently used to treat multiple sclerosis, with an antibiotic may slow the progress of the disease, according to a new study.
"Multiple Sclerosis (MS) is an immune-mediated disorder that affects genetically susceptible individuals after exposure to certain, as yet unidentified environmental antigens, or disease-causing agents," the authors write as background information in the article.
======================================
While not specifically about MS, this is a must read article:
posted
Goldings' article was really good Keebler.....two thumbs up..
Ali.....
So sorry you have to go through all of this..... ....of all the years that I have had lyme...my vision has been off and on.....always better with treatment....
I truly believe that lyme & co...can cause MS symptoms....
either way its still a horrible thing to go through...
just wanted to let you know I'm thinking about you and your in my prayers....
mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
This new article may also be of help. Sojourner posted it to the Cpn site recently:
May 2008 Volume 39 Number 5 LABMEDICINE www.labmedicine.com - American Society for Clinical Pathology
Chronic Bacterial and Viral Infections in Neurodegenerative and Neurobehavioral Diseases by Garth Nicolson, Ph.D.
-
Borrelia is discussed in Nicolson's article, as are other infections such as Chlamydia Pneumonia (Cpn). I noticed, for the first time, that Nicolson made reference to a HHV-7. I have read about HHV-6. Did not know there is a 7. Hmmm.
For chronic illnesses (CFS, FMS, RA, among other illnesses) that could have an infectious component, The Institute for Molecular Medicine suggests the following lab tests (codes are CPT codes):
1. MycoplasmaTest Panel (CPT: 87798x3, 87581)--Mycoplasma species panel of 4 pathogenic mycoplasmas (M. fermentans, M. penumoniae, M. hominis, M. penetrans) by PCR.
Alternatively, a Mycoplasma general (all species) test by Qualitative PCR can be substituted.
Continued at link.
This is good for EVERYONE to look at.
Other tests are discussed, too, such as Cpn, HHV-6, etc.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Oh, afterthought - and edited into above post on this topic:
about STEROID EYE DROPS:
while steroids are generally contraindicated with lyme except in emergencies, occasionally, short term use of steroid EYEDROPS can be very helpful, &/or very necessary in certain situations where nothing else is as effective. With the proper guidance, LD pts have seen improvement. This could save vision in some cases.
==================
I had this test done in '84 and they glue electrodes to my scalp, no they did not shave. You would be instructed not to wash hair with any conditioning shampoo prior to test, however. The hair needs to be squeaky clean to have the glue or paste hold. It will wash out, but takes a little effort.
I stared at a screen and saw black and white checks doing funny things.
You might call the lab where you are going and ask about the procedures in case they've changed. AND, if you are chemically sensitive, ask about the glues used, if there is one that is safe for MCS and if they have fresh air ventilation if not.
A visual evoked potential (VEP) is an evoked potential caused by sensory stimulation of a subject's electroencephalography.
Commonly used visual stimuli are flashing lights, or checkerboards on a video screen that flicker between black on white to white on black (invert contrast).
. . .
Other applications include the diagnosis of optic neuritis, which causes the signal to be delayed. Such a delay is also a classic finding in Multiple Sclerosis.
Visual evoked potentials are furthermore used in the investigation of basic functions of visual perception.
The term "visual evoked potential" is used interchangeably with "visually evoked potential". It usually refers to responses recorded from the occipital cortex.
Sometimes, the term "visual evoked cortical potential" (VECP) is used to distinguish the VEP from retinal or subcortical potentials. The multifocal VEP is used to record separate responses for visual field locations.
- full article at link.visual field and is observed using an
-
[ 16. May 2008, 03:34 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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Motion-onset and pattern-reversal visual evoked potentials in diagnostics of neuroborreliosis.
Kubov� Z, Szanyi J, Langrov� J, Kreml�cek J, Kuba M, Honegr K. Department of Pathophysiology, Charles University in Prague, Faculty of Medicine in Hradec Kr�lov�, Czech Republic.
Neuroborreliosis is a form of borreliosis that affects the central and/or peripheral nervous system.
Although it can mimic neurologic and ophthalmologic disorders such as multiple sclerosis and optic neuritis, visual evoked potential (VEP) examination is usually not used in neuroborreliosis diagnostics.
Combined VEP testing (pattern-reversal VEPs and VEPs produced in response to linear and radial motion) was performed in 81 patients with neuroborreliosis verified by laboratory results (positive polymerase chain reaction or intrathecal antibodies production).
Thirty-four patients reported diplopia or blurred vision related to borreliosis.
In 33 (40%) patients the VEPs were delayed: motion-onset VEPs were pathologic in 22 (27%) patients, reversal VEPs in 5 (6%) patients, and both VEP types in 6 (7%) patients.
The findings suggest that VEP testing (especially the motion-onset VEP testing) can confirm CNS involvement.
Much higher sensitivity of motion-onset VEPs in comparison with reversal VEPs can result from rather selective (earlier) involvement of the magnocellular system or the dorsal stream of the visual pathway.
posted
Yup the neurologists ordered a LP for me and I told them heck NO.
This was even after having a head MRI that showed the famous nonspecific white matter lesions. I had also done a cervical MRI. Neurologistis told me that the lesions were 'normal'. Whatever. Yea normal for LD you idiot.
What are LP's good for? What specificallly are they looking for in the LP?
Posts: 188 | From ID | Registered: Jan 2007
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote: They aren't going to stick needles INTO my head for the evoked potential are they? I found that a little confusing. They just attach them to my scalp with some kind of adhesive. Please tell me they aren't going to shave my head.
I think I need to go back & read more about the visual evoked potential.
AliGator!!
Sheesh Golly!
The visual evoked potentials testing (VEP, it's called!) is such a piece of cake. You get some sticky thingies stuck on your scalp. No shaving or anything remotely uncomfortable.
You basically sit and look at a pretty cool flashing checkboard pattern on a screen. You look at it so long you 'bout get a headache from it. It's very 60's. Very psychedelic, baby!!
And that's about all there is to it!!
Note that positive findings on VEP do NOT necessarily indicate that you have MS!!
Now, the lumbar puncture, that's a tad bit different.
I'm not sure WHAT they could hope to find that could definitely convince anyone you had MS over lyme. Considering most things expected to be found in an MS tap can also be found in a lyme tap. So I really like the suggestion to put that off a tad bit, unless you would aggravate your lyme doc unreasonably. But seriously, oligoclonal banding -- most neuro docs will swear it's MS -- ain't so. COULD be lyme. And on and on.
Here's one thing to remember about a spinal tap.
The procedure itself really did not hurt. Honest.
As directed, I drank so much liquid prior to the procedure that I waddled in.
Afterward, I was forbidden to rise to go pee.
I thought I could wait it out rather than suffer the indignity of a bedpan.
Oh, how LOOOONG I suffered before I caved.
(Speaking of caved, I sure do miss Cave.)
I followed every directive to the letter, yet still suffered a massive headache that lasted several days, relieved only by lying prone.
Findings were elevated proteins and opening pressure, and a mix of other bizarre readings.
Don't sweat it. You will come through just fine. I just KNOW it. But here's a hug, just in case!!!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
I am so sorry for what is happening to you...
I have been looking around about MS, because I also had that as a POSSIBLE DX,
"Multiple Sclerosis" Litterly means "Multiple lesions" It does NOT say what these "Multiple Lesions" come from. It is almost like calling something "Fibromyalgia" which means Pain in the Fiborous muscles, but does not give cause to why.
There has to be something CAUSING, Multiple lesions, ETC...
So it could be that LYME is the culprit and if you look up Lida Mattman and MS...You will see that she found BB in almost all tests subjects that were DX'd with MS, PD, Alzheimers, Lupus, ETC...
I hope you dont have to go through a LP...my son had one when he was just a baby and...well..uh
I am wishing you well!
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Oh my goodness!!!!! It looks like I have some work to do here!
My DH dragged me away for a few days & I come back to find that there are 56 replies on my thread!!!!!
I have to get busy reading & responding. Unfortunately I'm quite tired (make that completely exhausted) so I think I'll have to try to do this tomorrow.
I glanced through & saw that there seems to be loads of great points made & a wealth of good advice. ((((((GREAT BIG GIANT HUGS))))))
I also see lots of love from my friends, whom I think I freaked out by changing the thread title. I don't think any of you really missed this. It originally said "Optic Neuritis - Please help me!!!" and I was looking for info on that. If you never had the "ON", you would have likely (& understandably)SOB'd. (It wasn't you, it was me! )
The "Lumbar Puncture" part many would more likely be familiar with.
Thanks everyone for all of your replies. I truly appreciate all the information, comforting words, encouragement, explanations, reassurances, advice, prayers, good wishes and MUCH NEEDED hugs! I will try to do all of my homework tomorrow and see if I can digest everything.
(DANG, Keebler! You've REALLY been doing some research!!!!!!! Thanks for the MULTITUDE of links!!!! )
Thanks again! Back soon, Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Ali,
Some of my groups of links are surely from others' gatherings. I've collected them all over time and tried to consolidate. I'm just glad there is so much written and so many others have provided links along the way for us to learn from.
I hope your time away was good. Good luck with all this.
Oh, BTW, lyme can cause demyelinated areas just as "MS" - so if they say you have some demyelination and therefore that has to be MS, that is NOT so. I do not have the citations at my fingertips, it may be in the Goldings' article or you could cross search the terms at PubMed.
I always search with "lyme" and again with "borrelia" as it often brings up a different number of results.
And if you need an MRI, EAR PROTECTION IS VITAL. If you ear plugs do not seal correctly, make the technician stop until you get a tight seal. Even so, if someone is sound sensitive the MRI can still be very assaulting.
Plan to have someone drive you home and rest your ears - if there is ringing - rest until that stops before wearing any headphones or new noise exposures.
CT scans, and SPECT are quiet, however.
take care.
-
[ 18. May 2008, 10:41 PM: Message edited by: Keebler ]
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Hi dear Ali!
Just sent you a LONG long PM; which reiterates much of the good advice you already got above.
Ditto to what many folks said; to summarize:
If it were me, I would not do a spinal tap. If you know you have lyme, treat that as aggressively as you can. Why do more testing if it will not tell you anything that you don't already know?
Ditto to what Michelle said: I had a spinal tap years ago, the tap itself did not hurt at all.
But I could not get up and walk without massive horrible headaches for over a week afterwards!
I know you and your family will make the right decision! Be well and thinking of you!
My sons have intracranial hypertension. The main 2 symptoms are headaches & eye problems (swelling of the optic nerves).
They have had several LPs. Their neurosurgeon uses a sprotte needle which is a small needle. It decreases the chance of a spinal leak.
My kids neurosurgeon has them lay flat for at least 4 hours before they can go home. At home, they lay flat for at least another 24 hours.
Jordan gets an IV with caffeine right after the LP. Caffeine drinks also help the headache.
The amount of fluid taken off affects your recovery. My kids have high opening pressures (450) and have had as much as 50 ml of fluid taken off. If a high amount of fluid is taken off, it would take 2-3 weeks for them to recover.
I don't know about the pain of an LP. My kids are sedated for their LPs.
Some meds can cause intracranial hypertension:
Sulfonamides (e.g. Septra)
Tetracycline related compounds - Doxycycline, Minocycline, Accutane
I hope you find answers soon!
Peggy
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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AliG
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Member # 9734
posted
I'm still reading, but I think I have to post for clarification.
I must not have mentioned previously that I had an MRI of the Brain and orbits (with & without contrast) and there were NO ABNORMALITIES. NO LESIONS, nothing remarkable at all.
My regular Ophthalmologist sent me for that & said NO MS because of clean MRI!!!!!!
This is part of why this whole thing is freaking me out. Can I still have things show up on an LP when the MRI shows NOTHING?!!!! What kind of things????
Can someone tell me what the oligoclonal bands are/mean? Is there something else that could be determined/ruled out by the LP besides Lyme/MS? I will have to try to look that up after I finish reading all this.
I wonder if the purpose of my having the LP is more for some kind of "proof" that Lyme causes "MS". That would go toward the "greater good" and I might then consider subjecting myself to it if it would help convince some of the numb-nuts out there that there CAN be a connection between the two.
I would do it if I thought it would help some Lymies who had been misdxd with just "MS" get proper treatment and save them from the steroids.
I still don't want to do it, but that would be about the only way I could rationalize not making them drag me in, strap me down and knock me out first.
Geneal, I have to say that I much prefer to believe that my Sx are due to undertreatment. Thanks for the reminder about the inadequacy of the Zith to penetrate the BBB!
No BBB-crossing Lyme Txing ABX since early January with returned & increasing Lyme Sx. I think I should have still been on a Lyme Txing ABX WHILE taking the Levaquin for the BLO, NO?!!!
This HAS to be active Lyme! I NEED to believe that! I can't believe that my immune system has become confused, due to "molecular mimicry" and has turned on me.
I want to think it's because there is still an ACTIVE invasion, that my immune system is still fighting a battle (& sometime my own cells might mistakenly get caught in the cross-fire). I want to believe that if I can take the invaders down, I'll stop getting walloped.
I'm going back to read some more. I just wanted to note my clean MRI to clear up that one had already been done.
Thanks again! Back soon! Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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Please read this article, it may help! The second Paragraph Talks about MS....its VERY interesting. I also have a hard time believeing my immune system has gone haywire and started attacking itself.....This article explains that really well!!
I hope you find the answer, and everything will be ok!!!
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Dilly!
That was EXACTLY what my Ophthalmologist said! (No lesions on MRI ruled out MS)
WHY DOES the Neuro-Ophth think it's necessary?!!!!!
Thanks for all the tips Dilly & everyone else, on how to try to avoid the after-effects of the LP. I think that has effectively scared the crasp out of me.
I'm not feeling so noble anymore after doing more reading. In thinking about it, it would seem that if no bands showed up, I could actually end up hurting the MS misdxd Lymies with more ammunition against them.
HUGE CONSIDERATION:
If I am Dxd with MS, would I choose to Tx with steroids? NO WAY IN HELL!!!!!! I would choose ABX and I would find a doctor that would Tx me with them. I know they're out there!!! I'm going to read Keebler's links to this MS/ABX info.
Why do we need to look further for MS? Why do I need invasive tests? Why can't we give me more ABX & see if I respond? I WAS STILL RESPONDING TO THE ROCEPHIN (until it was stopped)!!!!!!!!! THE LEVAQUIN WAS HELPING (with many bart-like Sx)!!!!!!
How do I get this LL?IDMD to give me more ABX?!! IDs don't Tx MS, so if MS - not his problem? (fair assessment?) Is it time for me to get to an ILADS doctor for another opinion? I think I either need to find another LLMD or take an "MS" Dx & get to a doctor that Txs it with ABX.
I don't think I can keep playing this game of hoping that the doctors I'm going to are learning from my treatment. One of my LLMDs did prescribe Levaquin to his receptionist, after my providing the link to Dr.B's video and she has been doing remarkably well since.
There's no telling how many present/future patients that info might benefit. Maybe my work with the LL?ID is done? Maybe I can move on to an open-minded MS doctor who can learn from my Tx and my primary LLMD can glean info from that connection as well?
I WISH I KNEW WHAT THAT LL?IDMD WAS THINKING?!!! I have no idea whether he is thinking of Txing me any further or just expects me to do Buhner's herbs. I don't know if he has me waiting to go back for 3 months to be sure it wasn't the Levaquin causing the eye problem.
Why would he have me going back in three months if he thought there was nothing else he could do for me? That would be TOTALLY pointless, would it not?
Perhaps I am just being impatient & overly fearful. He WAS open-minded enough to give me the Levaquin for the Bart Sx & was previously unfamiliar with Dr.B's findings.
ON CAN be caused by Levaquin (though my Ophth's don't seem to think it had ANYTHING to do with the Levaquin) LL?ID is NOT an Ophth and is likely trying to act in MY best interest, even though I think (as would most here ) that would be to GIVE ME MORE ABX!!!!!!!!
This is SOOOOoooo FRUSTRATING!!!!!!
So now I think I need to read some more & also pose that little question to the Neuro-Ophth about why we need to do LP to Dx MS if I WON'T do the steroids.
Back soon, Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
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posted
TC-
Dr.S said he will talk to me after the tests are done. He doesn't think he needs to make me schlep all the way out there again for a follow up appointment.
My Ophth had already warned me about the Neuro-Ophths feeling the need to order a whole bunch of tests to probably tell me the same thing he did. (So I actually was forewarned)
Since it wasn't clearing up though, he thought a second opinion from someone who sees these strange things all the time might be a good idea.
Dr.S also said that Dr.R should get the cataract out of my other eye "yesterday" and "what are we waiting for?"
That's "surgery" . I can't imagine that could be a good idea while not on ABX. Maybe I can talk Dr.R into ABX before/during/after surgery?!! That could be worth a shot!
Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
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posted
I got sidetracked
Great Article UI . It DOES do a good job of explaining what we believe to be true.
Maybe the term "MS secondary to Lyme Disease" could be just a way of saying that Lyme is the cause of the damage? Perhaps it's NOT saying that Lyme has triggered a haywire autoimmune response?
I wonder if I misunderstood what he was telling me. I'm not so sure I misunderstood. He was talking about the OspA in Bb and OspA being a protein that's found in the human body.
I would think that if your body had recognized the Bb OspA as hostile it could take out some of our own OspA while trying to get at the Bb. If the immune system were to get rid if the Bb, would it then STOP attacking OUR OspA?
If we developed ABs to OUR OWN OspA proteins, would that throw up positive bands on the Lyme WB for OspA?
Agggggghhhhhhh! I hate when I go off on these tangents & confuse the heck out of myself!!!
Back up to reading Keebler's links again
Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
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posted
Is there any type of coinfection or other comorbid condition that I might not be aware I have, that could be determined by the results of a LP?
I wish I could see into my future & know what the test results would be & where they would lead me.
Just thinking about having this done makes me want to cry. I imagine weeks of being tormented by the headaches I previously had (or worse). I don't know how I could stand that.
How does this sound, for a call to Dr.S's office:
"I understood that the lack of any lesions or abnormal findings on my MRI ruled out the possibility of MS. I had also heard that MS-like Sx can occur with under-Txd Lyme. Can you tell me exactly what would we be looking for with the LP and why it is necessary?"
Do you think posing that query to Dr.S might help clear up some of my confusion about this & possibly get him do back down on the LP?
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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posted
Yes, definitely ask questions. This is not the type of test you would want to get done with out being 100% sure why!
I don't know your whole story, but I think you mentioned trying to get to an ILADS doc. Could you tell Dr. S. you want to hold off on the L.P. until then?
What is his concern if you don't get a L.P. now vs. 6 months from now.....
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Unless they are looking at an ACUTE swelling of the brain or spinal cord such as with meningitis I am perplexed as to why they are even considering this.
So many other diagnostic measures are available for the eyes and optic nerve.
If they are only looking for MS, that is no reason for a LP.
Why can't you call the doctor and ask to speak to him as to why he wants you to have the LP....and what he is looking for or ruling out...
.....sometimes when we go to a doctor appointment we forget everything they said....so questioning him is not wrong.... I don't think he would back down on what he wants done....but he certainly needs to know your concerns about having the Lp or not.
Is your LLMD aware of your appointment with this eye specialist ....did this doctor send your LLMD a report of what he is doing and why....and what his opinion is from your appointment with him. Usually you have to ask them to send another doctor a report.
You should be able to call your doctors for any questions or concerns you have with any of the tests they order or treatments they have you do.
Maybe if your LLMD knew what was going on he would put you back on an antibiotic.....
Its all so overwhelming...
mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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AliG
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posted
I think there MUST be something else he would want to rule out. This isn't making sense to me either.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
Frequent Contributor (1K+ posts)
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posted
quote:Originally posted by mtree:
Ali.....
Just my 2cents.....
Why can't you call the doctor and ask to speak to him as to why he wants you to have the LP....and what he is looking for or ruling out...
.....sometimes when we go to a doctor appointment we forget everything they said....so questioning him is not wrong.... I don't think he would back down on what he wants done....but he certainly needs to know your concerns about having the Lp or not.
Is your LLMD aware of your appointment with this eye specialist ....did this doctor send your LLMD a report of what he is doing and why....and what his opinion is from your appointment with him. Usually you have to ask them to send another doctor a report.
You should be able to call your doctors for any questions or concerns you have with any of the tests they order or treatments they have you do.
Maybe if your LLMD knew what was going on he would put you back on an antibiotic.....
Its all so overwhelming...
mtree
Sorry mtree - you must have been posting at the same time I was & I didn't see your post because it ended up on the next page.
I think I have relapsed into a state of conversationally-challenged, semi-verbally paralyzed stupid right now. I'm having trouble collecting the thoughts floating around in my head & making them come out of my mouth in a sensible fashion.
I have the fear that I will call & say/ask none of what I want to, and get off the phone again feeling depressed & stupid.
I didn't really tell him anything that I would have felt it was important for him to know while I was there because I am not thinking right. I should know, by now, to bring notes of what I think is important to a doctors appointment.
I was told to bring copies of my medical records. I spent the previous day driving (almost blindly & terrified) to both LLMDs, the Ophth(twice) and my PCP to collect everything.
He just took the MRI CD and read from my PCP's records, that she had faxed over because for some reason I am not allowed to set eyes on them, and asked me questions. I didn't really know time frames, but I couldn't read ANYTHING (to try to cheat from the records) because my eyes were dilated.
The fact that I had gone through such a traumatic experience to get the records & he didn't even want to look at them, really threw me off my game. I couldn't get my mind past it to actually think about what he might need to know from my perspective.
I guess I'm afraid that I will freeze up again, when I try to call, so I feel the need to figure out how to convey what I want to know & what I feel the need to tell him before I actually pick up the phone.
I've been reading the links & it's not "sticking". I was hoping today would be a better "brain" day. So far, it's not looking too good.
He is sending a letter, copied to all four Drs and me. I am waiting to read it because I have no clue what he said. He was verbalizing everything he was writing but it just went right through my brain & landed somewhere on the floor.
I hate feeling like this! It's like the cat has not only my tongue, but my brain as well.
I am HUGELY depressed today. I think I'm feeling way beyond overwhelmed. I can not even make sense of what is happening with the possibility of "MS secondary to Lyme" as a Dx. I don't really know what that would mean to me, in terms of pursuing Tx.
Oh darn it!!!!! Now I'm crying and that will get me absolutely nowhere.
I HATE IDSA! I know this is somehow all their fault. If they weren't such a bunch of flaming Jack-arses, I'll bet the proper Tx of these stupid TBDs would be common knowledge among ALL doctors by now. :cussing: (much more productive than tears, don't you think)
Oh, as for LL?IDMD & ABX..... "Too much ABX are not good for you either." That's the response I got when I was astonished that he was sending me away with no ABX, in spite of my relapsing & with my new-found eye problem, not to be seen for another 3 months.
Remembering that just makes me want to vomit.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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JRWagner
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posted
PM mailbox is full
Posts: 1414 | From Ny, Ny | Registered: Oct 2002
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AliG
Frequent Contributor (1K+ posts)
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posted
I just realized that "MS Secondary to Lyme" means Lyme+MS, NOT "POST-Lyme MS"!!!!!!!!!!
That would mean that Lyme SHOULD still be Txd! RIGHT?!!!! It would mean that I am now being attacked on two fronts. Which actually with "molecular mimicry" we would be ANYWAY.
I feel like such a MORON! I HATE being
I HATE THIS DISEASE!!!!!! :cussing:
[ 20. May 2008, 03:57 PM: Message edited by: AliG ]
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
What's the meaning of the oligoclonal ABs? Do they mean we are making ABs to your our cells?
I do realize that, with Bb lurking about and mimicking our own cells, our immune systems would do that anyway. Would we be doing that WHILE we were presently being Txd with ABX or would that calm down our own immune response to them?
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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