Monica
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Member # 224
posted
I consulted a neurologist yesterday who I believe is Lyme literate. I had an MRI of the brain done Friday and the results were not yet available.
Quick recap on my condition: I have lost my ability to walk other than a few steps. I cannot lift my left leg. I am in bed most of the time.
I was treated by an "LLMD" since Feb 05 since my PCP hadn't rid me of Lyme disease. As soon as I started taking the mega antibiotics my condition went downhill. I walked into this dr.'s office with a cane. Last time I saw him in June 06 I was in a wheelchair. He kept telling me I was herxing.
There is no doubt that I have Lyme disease, but uncertain whether or not I have any other TBIs.
I am consulting another LLMD now who has me on a holistic approach.
Neuro had a list on a bulletin board behind his desk of "Lyme/MS" patients, handwritten, with names and ages. I didn't ask why he had such a list at his fingertips. Does he believe there is a connection? I will have to ask.
He says I have MS markers and wants me to have some non-invasive tests and also a spinal tap.
Now I have always fought the spinal tap, but he has advised that at this point we can't leave any stone unturned.
I have one scheduled at the end of September. I believe he is looking for more MS markers and not necessarily Bb in the fluid.
Input anyone? What would you think/do?
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
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The deal with the Lyme/MS connection is because they are now finding success treating some supposed "MS Patients" with antibiotics.
The treatment for Chlamydia pneumoniae is very similar to the Lyme treatment.
Posts: 1366 | From Southeast | Registered: Sep 2005
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Monica
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Member # 224
posted
Interesting.
He did tell me he thinks I have had enough abx at least for the time being.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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posted
If you have insurance and can afford it I would try to talk the neuro into doing a SPECT scan -- would even probably do this instead of a spinal tap.
Hubby has had 3 spinal taps -- 2 were perfectly normal and the 3rd had elevated protein (he was unconscious in the hospital for 15 hours with probable encephalopathy at the time). The neuro did not send CSF to IGeneX as promised and of course all the hospital tests for Lyme etc were negative.
Hubby has 4 or 5 white matter lesions on MRI. Also has elevated antibodies to myelin on bloodwork (normal in CSF).
I don't know which neuro you saw, but the LLMD neuro hubby saw missed his coinfections and we are fighting his insurance company over the label of Post-Lyme autoimmune movement disorder as 2 months of IV Rocephin did not cure hubby.
If possible find some other Lyme patients who have seen your neuro as this is too important to let someone label you with something you may or may not have.
Would also insist on having CSF tested by IGeneX and or MDL for Lyme and other tickborne illnesses if you do go thru with the spinal tap.
Hubby was never in a wheelchair or bedbound, but treating for Babesia is what allowed him to resume walking for exercise. He said his muscles felt more normal and they didn't feel like they needed to shake while on the quinine/clindamycin protocol.
You need to find an LLMD who will test/and/or treat for coinfections. Clinical diagnosis may be required here as well as with the Lyme.
This is not medical advice, just my opinion.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Monica
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Member # 224
posted
Thanks for your input, Bea.
I don't think the neuro is looking for LD or other TBIs. He is looking for MS markers. I don't know if MS markers show up any other way than in CSF.
LLMD thinks I may have Ehrlicia. (Spelled wrong probably).
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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kelmo
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Member # 8797
posted
Thank you for the link. Wow, that's a bundle of info!
Yesterday, at my daughter's LLMD appt, I told him that I could count on my hand how many friends of mine have been diagnosed with MS in just the past month!
He said, pointing to her chart, "SHE has MS". He feels that MS is bacterial origin.
In that informative link you gave, it even said that bacteria, virus and fungii may be a cause for MS.
I understand that's one article, but I would hate to hand someone the death sentence of MS, and just be made "comfortable", when there could be a viable treatment!
Shame on them!
Posts: 2903 | From AZ | Registered: Feb 2006
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posted
I don't mean to be personal, but can I ask exactly why you are in a wheelchair? I ask because I developed peripheral neuropathy, I think from too much Flagyl, and I wondered if you had the same problem.
My LLMD sent me to a neuro duck who is not LL, I had a spinal tap (which was clear, and ruled out Lyme as far as he was concerned)and was a total waste of time and money.
He then sent me for a neuro-psych consultation which was a 12 hour non-stop tests of all kinds, puzzles too (whoo-hoo!). And how lucky was I, who got a neuro-psychologist that was from NY that had LD????
The reason for these tests are to rule out symptoms being psychological or physiological. There was damage from my left frontal lobe and hemisphere, along with several other neuro problems. But it also said that not only were the findingd consistant with LD, but also (as IN ADDITION TO) MS and/or other encephalopathies.
I see the neuro on the 29th, but I thought I'd ask about your handicap first.
I wish you well, Jill
Posts: 203 | From Jacksonville, FLorida | Registered: Oct 2005
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That's weird about the dr's list being posted on a wall.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
I posted in the wrong subject. It was similar, but not this one. Sorry for the confusion. There is another MS/Lyme subject today that was posted. Confusion.
Posts: 2903 | From AZ | Registered: Feb 2006
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MS shows up as lesions on the brain MRI and/or cervical spine MRI for most people. Then, neuro's will sometimes/sometimes not do a spinal tap to confirm. Spinal taps are no fun. I had one in May. However, for me, it was a must for my piece of mind. It was normal, as well as all my other neuro tests, MRI's etc...I would definitely want to know my MRI results first if it were me.
It sounds like he wants to be sure it's lyme and not something else.
Also, I don't get the list with pt. names. That's a huge breach of confidentiality unless each pt. gave him permission.
Posts: 340 | From Ohio | Registered: Oct 2005
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Monica
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Member # 224
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There is no doubt that I have Lyme Disease. The question is whether I have some other disease as well.
The neuro suspects I also have MS because I have "markers" for it.
Lesions on the brain can also be from LD, although I did not have any in my year 2000 MRI.
My legs are weak and I have no sense of balance -two more reasons why I can't walk.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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Monica
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Member # 224
posted
Forgot to mention I got noticeably worse from the minute I started with Ketek. Worse with Plaquenil, Doryx, Cedax. But nothing made me decline faster than the Flagyl.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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Mathias
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Member # 5298
posted
If you are going to get tapped have it tested for TBD's at the same time. You don't want to have to go through that again. Have a mycoplasma PCR panel done by MDL too on it.
Also sent you a PM with a doctor's name of where you should get tapped. It is relatively painless.
Good luck.
-------------------- Mathias Posts: 1242 | From New Jersey | Registered: Feb 2004
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My tap was ordered by the neuro. The llmd didn't know I was having it done. The lyme test was negative. My llmd said lyme testing from spinal fluid should be a PCR.
Posts: 340 | From Ohio | Registered: Oct 2005
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Michelle M
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Member # 7200
posted
Hello, dear Monica.
I would not fight a spinal tap.
Not to say they're as enjoyable as an average Sunday tea, for example, but in a complex case, a good tool.
I believe Lyme can evoke an MS response in people.
You may find MS markers in a spinal tap, such as oligoclonal banding. This does not DISPROVE lyme disease, however. Nor does it necessarily mean that lyme treatment has been in vain. Many MS patients improve on antibiotics. You are very clear that you have lyme so I'm assuming your tests are already pretty clear.
I do find it odd that no other treatments have been tried despite your downhill slide.
I find it odd that coinfections have not been addressed.
As far as your neuro's little 'list' of lyme/MS people, he's probably just amazed and using his list to follow and keep track. If he reads any scholarly articles, the connection should not be a big surprise.
Don't hold your breath looking for Bb in your cerebrospinal fluid. Chances are slim. I had none, even by IGeneX, despite going on to test +++ on Bb specific bands on western blot. However, there is still a lot of good information in a lumbar puncture, i.e., evidence of inflammation, blood-brain barrier permeability, etc.
I'm glad you're seeing someone new. I hope something new can be tried that will bring you some results. I wish you strength to keep soldiering on!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
On last night news ( several stations ) in the NY area there was a DR on stating that remarkable improvement is being done with MS through somekind of drug treatment like chemo-therapy. Forgaet the drug but people are walking etc and there lesions are going away....ck it out
Posts: 355 | From NY | Registered: Jan 2006
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Monica
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Member # 224
posted
Thanks for all your wise words.
I felt pretty good today. The painkiller and antispasmodic meds made me tired.
My right knee is still painful from the osteoarthritis, but I am still amazed that I just can't walk!! Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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posted
What about iv rocephin. Three weeks ago I could not walk, my legs were buckling on me, and I was having a difficult time breathing. My right eyelid would close very easily when doing neuro testing.
I was in the hospital with possible MS diagnosis, or possibly myathenis gravis. I had MRI's and alot of blood work. They wanted to do a spinal tap but I refused, because I had one done five ago and it didn't show anything. All the testing came back negative.
On iv now almost 2 weeks and I can walk again, and my vision is much more clear. Also I can keep my eyelids open.
I would try iv, and see what happens.
Posts: 175 | From Pa | Registered: Aug 2006
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Monica
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Member # 224
posted
I was on IV Rocephin for 2 1/2 months in 2002. At that time I was walking. It did help, and my PCP had me start orals while still on it and continue for 4 months after. I relapsed anyway and lost my gallbladder.
I have a different insurer now and neuro seems to think they would not pay for more than 30 days of IV.
Glad it's worked for you. Hope your improving health continues.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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I wonder though what will happen this time when I come off iv. I am not typical a pessimistic person. But I have learned with this disease I must be realistic. My insurance will only pay for 4 wks of iv, and my llmd will fight for more, but who only knows.
What type of orals were you taken, and are you still on orals?
Posts: 175 | From Pa | Registered: Aug 2006
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Monica
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I am not on any antibiotics at the moment.
I believe he put me on Biaxin and Suprax at the time of weaning me off.
Don't know how long you've been infected but don't think 4 weeks is long enough for anyone.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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posted
I so agree with Michelle that Lyme can evoke an MS reponse. I was mis-diagnosed with MS for years before a doc did an IGeneX western blot on me; I tested CDC positive for LD.
When I was misdiagnosed with MS I learned that epidemiological studies show that MS has both a genetic predisposition and a possible infectious agent as the cause. Gee, I wonder if Lyme could be the infectious agent that causes MS? Maybe more than one infectious agent can cause MS? Am told that the maps of MS incidence and Bb carrying ticks are just about the same.
Also, remember that Lyme is treatable. MS drugs are shown to reduce the severity and frequency of flare ups but that's pretty paltry if you ask me. I was thrilled to learn I had something treatable. Lyme tx is no picnic, but at least I have the chance of not being doomed to a lifetime of injecting MS drugs that are of questionable value IMHO!
Denise
Posts: 261 | From San Mateo, CA | Registered: May 2005
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Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
I have a friend who was dxed with MS and was injected with a drug (can't remember the name) and the lesion(s) on her brain cleared up. She is doing much better.
Just had neuro tests today at hospital to see how fast messages get to my brain stem. BEV? VEV?
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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