posted
Do any of you have brain lesions w/neurological symptoms? This is how it all started out w/me and now I have the joint/muscle issues as well. I just tested positive w/IgeneX western blot and have an appointment w/Dr. C. in Missouri next month.
posted
Most likely oral to begin with. You want IV to be your last resort unless you have Lyme encephalitis or severe neuro symptoms.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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bettyg
Unregistered
posted
many have posted they were dx with MS due to white lesions in brain; so hopefully others who have this will stop and read your post soon especially the weekends only readers...
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posted
Hi - I'm one of those individuals who was diagnosed with MS because of lesions.Lived with the MS diagnosis for about 12 years. Then finally figured out it was Lyme all the time (this is the short version).
Anyway, I still have the lesions. They were less so 2 years ago after being on abx for just over 2 years. I am due for another soon. My spect scan shows severe encephalitis. Still on oral abx, denied IV from Aetna.
good night..
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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savebabe
Frequent Contributor (1K+ posts)
Member # 9847
posted
Also check for bart, this infection can cause lesions as well.
Posts: 1603 | From ny | Registered: Aug 2006
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
I'm a lyme/MSer too...told ms for 17 yrs.before given nme of true LLMD. Same scenerio, lesions so told MS despite first symptom was terrile headache with Bell's Palsy.
(And I live in CT too, at same time 3 brothers had positive lyme test). For 17 years docs only did ELISA...always Neg so never bothered w/ Western Blot.
Anyways no new lesions...all stable in head. Ortho problems taking toll though.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Multiple lesions, very bad migraines, bilateral nerve problems in arms, MS diagnosis (tho no oligoclonal bands in spinal fluid). Recalled tick bite and EM rash, but neurologist unimpressed. Always negative on ELISA, super positive on western blot. Symptoms almost 100% neuro. Confused, lost, couldn't follow conversation, memory of a petunia. Neuropsych testing truly frightful. Positive for babesia WA-1, negative for bart.
Followup MRI almost identical, no improvement in lesions, but no new lesions. Have not had SPECT.
Tried orals a few months but LLMD really lobbied hard for IV Rocephin. Blue Cross shut it down in 30 days, as they are able to pull off in California with great success.
I think it's not to be taken lightly and certainly has risk, but in certain cases with clear neurological involvement it may be warranted if doctor and patient both want to try.
On the other hand, I don't think it's wrong to give orals a try. They wound up being more helpful to me than IV, since I couldn't stay on IV long enough thanks to Blue Cross. You just need to be super compliant and have blood levels checked a lot. And take LOTS of probiotics!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
big time nuero symptoms and 9 White Matter Lesions - the nuero duck called it stress and put me on anti-depressents. He'd be stressed too if he couldn't remember his kids names.
Similar symptoms as Michele. Treated w/ Six months orals followed by 6 months IV Rocephin w/ biaxin or zith. No follow up MRI but the brainfog didn't come back after IV.
Continuously treating Babesia and lyme off and on for 18-months since with ups and downs.
Rocephin was great...I'd do it again, but I like to swim which is tough with a PICC. I was feeling great when I went off it, except a stiff neck. Administration is easy once you get used to it! My first three months orals was doxycyclene which helped tremendously at high doses...saved my job I'm certain. Also helped confirm clinical lyme diagnosis.
Never tested positive for lyme.
Posts: 87 | From Yorktown VA USA | Registered: Jul 2005
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posted
Hi Soonermom, I've got lesions & my initial symptoms were total neuro - difficulty swallowing, burning skin, numbness, tingling, disorientation, confusion, word finding, short term memory problems, processing problems, stutter, drool, eyes, many, many more - oh yeah. I went through 2 MS investigations & am monitored annually by an MS specialist. Coming up in a few months is my annual contrast brain MRI - will be interesting to see if my lesions have reduced with abx treatment.
Many neuro symptoms are improved, others are persistent. But, definitely improved over all with 400 mgs daily doxy or doryx, for a little over 1 year. I never did IV, my LLMD has said info is starting to come in that properly prescribed & dosed, sustained orals can be highly effective & even match IV results in some cases (doxy is one that crosses blood/brain barrier). He also said neuro symptoms are very often the last to go.
I would certainly do IV if I absolutely had to, but if the orals have the potential to work, I prefer that route. I have had a lot of improvement going strictly oral, but I do have a sense it is a slower process than IV, plus orals have their own challenges. I also know many could not get any improvement except through IV.
Best to you -
otm
Posts: 314 | From east coast | Registered: Oct 2007
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daise
Unregistered
posted
Hi Soonermom,
A VA neurologist went looking for MS and ordered an MRI. Yes, I had a white matter lesion, actually by 2 MRI's. But the VA neurologist ducks all called that a stroke.
They lied.
My MRI's never showed any evidence of a stroke.
Furthermore, my Bell's palsied face had been staring at them for 4 months! My right side had an obvious droopy eye and lip, a puffy eye, my ear hurt. My voice was blubbery and slurred, I had constant, severe head pain and my hearing wavered.
I got no physical therapy from them. Please understand, I was before several VA neurologists!
I had encephalopathy. IV Rocephen crosses the blood / brain barrier well. I had that for 6 months plus biaxin, immediately followed by ten months of LA Bicillin shots in the butt 3 times a week plus orals.
LA Bicilllin also crosses the blood / brain barrier well.
I am grateful for all of this. I continue on orals.
posted
Thanks for all of your responses! My GP wants me to do lumbar puncture to make sure that nothing else is going on. I know most of you don't recommend it. I did call IgeneX and the test CSF and if I did have it done, I would definitely send a sample to them also. I really think that they are still stuck on MS. My next MRI is in May, I had 13 WML's on my last MRI that weren't typical for MS or Migraine and it was never suggested that it was a stroke. I mean "HELLO" they were from something!! I guess that I am really lucky to have met a friend on line that insisted that I re-test myself for lyme using IgeneX. That was the worst 6 months of my life!
38 year old physical therapist. 4 white matter lesions, 10 "hyperintensities". 5 months of mis-dx. Ducks said MS even though I screamed Lyme for months. ?Even had a piture of the EM!
Anyway, did IV rocephen for 6 weeks - only two horrible herxes and felt much better after.
My problems were ALL neuro/brain fog. Some minor twitches and transient paresthesias remain.
Remain on Ceftin, Amoxocillin and Penicillin. I would definitely do the IV again.
Also had a spinal tap, which I will repeat at the one year mark. This can be MUCH more tolerable with a few tips.
PM me if you're going to get one and I give you these tips.
So far, the good news is, I have NEVER heard of any Lyme/MSers getting NEW lesions. Have you?
Allison
Posts: 43 | From Chicago | Registered: Mar 2008
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posted
Hubby had 3 spinal taps. Has had 10 or so MRI's in the last 7 years. Before he got sick with tickborne diseases he knew he had 2 white matter lesions. Over the years it increased to 5 or so then we think it decreased to 4 after he did some IV phosphatidylcholine (Kane protocol).
As for the spinal taps -- one of the three showed elevated protein (he was unconscious for 15 hours in the hospital the day that one was done). Based on that and other tests an LLMD neuro clinically diagnosed Lyme. I do think the abnormal spinal tap was one of the reasons we were able to get insurance to approve 2 months of IV Rocephin.
Soonermom -- You already have a positive Western Blot. If this was me I would probably save my money and skip the lumbar puncture. Hubby wasted way too much money in the early years before a diagnosis -- the docs kept repeating the same tests over and over. Now it is hard to come up with the money for meds and supplements let alone tests after being disabled for 7 years.
If you do have the spinal tap done I would have IGeneX send you the test kit for the spinal fluid and mail it in myself -- the hospital neuros were supposed to do that for my hubby the time his protein was elevated. but that didn't happen.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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