posted
I have spots on brain and neuro says MS,started me on shots(that I haven't taken in a few weeks)
My question is: What stops the lyme in brain and kills it, so immune system does not attack brain(lyme being in brain). I have been on Ceftin&Cipro for around 2 yrs, so why is immune system still attacking? Does that mean the Lyme is still there? My last symptom hanging around is dizziness? Anyone have any insight on this or experiences with? Any info. would be great
I just got put on Mepron also with the other I have been taking. LLMD said it's great and he even feels great on it. Anyone have experience with it? Does it help with symptons? Posts: 18 | From tickland,pa | Registered: Jul 2009
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gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
lyme,
i am sorry you are not doing so well.
bumping up so others may help you.
good luck.
Posts: 1127 | From atlantic city, nj | Registered: May 2008
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bettyg
Unregistered
posted
breaking it up for other neuros so they may be able to answer you.... please do this in future ok thanks ... hugs
quote:Originally posted by lymestinks:
I have spots on brain and neuro says MS,started me on shots (that I haven't taken in a few weeks)
My question is: What stops the lyme in brain and kills it, so immune system does not attack brain(lyme being in brain).
I have been on Ceftin & Cipro for around 2 yrs, so why is immune system still attacking? Does that mean the Lyme is still there?
My last symptom hanging around is dizziness? Anyone have any insight on this or experiences with? Any info. would be great
I just got put on Mepron also with the other I have been taking. LLMD said it's great and he even feels great on it. Anyone have experience with it?
Does it help with symptons? confused:
you're talking about the WHITE OR GRAY MATTER on the brain, right??
i've not had meds you're on; but majority of us have LESIONS on our brains.
antibiotics will kill off the spirochets in your brain IN TIME ...
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
get the dvd prestentation from the University of New Haven's Lyme conference...titled
"Chronic Lyme Disease: Connection to MS- Facts behind the controversy"
Also do a search here...search link is up under the "post a poll" it's not in bold text so it is easy to miss.
MS is just a symptom label. Multiple sclerosis, multiple hardening, multiple lesions, in essence multiple scarring. "Got lesions..got MS"
Over the years doctors & researchers stopped looking for cause...it became a disease unto itself. Similar to recently what happens to "Chronic Fatigue Syndrome & Fibromylagia".
They are just labels.
Some people have chlamydia pneunomia as the cause of their immune system's reaction. Google the "Weldon Protocal" for the info on that.
Some it's a reaction to a virus. Mine was/is combo of Lyme, Babs, Bart & the herpes simplex 1 (cold sore) virus.
Over the years I always asked & got tested for Lyme but always told negative...I found out the mds only did ELISA. Also by crappy labs.
You may not have been on the correct abxs or dosage to prevent new lesions.
Well, I really don't think you had any adequate treatment at all but didn't want to bash your doctor.
There are lots of combos of abxs..those you've been on didn't do anything for me. IV rocephen did nothing for too. The ones I feel that helped the most...high dose amoxicillin & IV Tigecyl. The others I'd been on kept me stable, no worsening, but the Amoxi & Tigecyl I gained more health.
I was labled MS for 17yrs before finding a LLMD...(the one who did the presentation).
Since under the llmds treatment -no new lesions none enhanced in 6 yrs. (last MRI was 6/09)
[ 09-27-2009, 07:03 PM: Message edited by: dmc ]
Posts: 2675 | From ct, usa | Registered: Jan 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
What is in these shots you were taking?
If steroids of any kind, this could be very dangerous if you have lyme. And many patients (not all, but many) who are diagnosed with "MS" do turn out to have lyme.
You really need to see an excellent lyme literate doctor before proceeding.
Oh, sorry, I just went back to re-read. Seems you've been in lyme treatment and now are just to begin treatment for babesia with mepron.
Is that what you said your LLMD says is great? Does your LLMD know about the shots the neurologist wants you to take for "MS"?
Yes, even after 2 years of lyme treatment, lesions can still be on brain. But, as your LLMD seems to be doing is exploring what else is going on. If the babesia can get treated then the lyme treatment has a better chance. Also lyme is not the only infection to create lesions on the brain.
As dmc 's post mentioned above, Cpn is also an infection that many with "MS" turn out to have as the underlying problem. Many patients with lyme also have Cpn
Also - liver support is vital to keep the toxins down. Higher level of circulating toxins create a bad soup for the brain.
CPN HELP - a wonderful site and you will see many who were misdiagnosed with MS getting better with the Cpn protocol which is very similar to that of lyme.
===========
You can do a search here for all the past threads from someone misdiagnosed with MS:
As for the dizziness, that can be very common with lyme and also with some of the meds (particularly minocycline, azithromycin and biaxin). There are things that can help but, ultimately, clearing infection is ideal.
You could, though, have a separate kind of vertigo that a simple technique might help. See if your LLMD can refer you to a LL neurotologist who can assess you for the full range of vestibular testing.
If you have something called BPV, benign positional vertigo, you would be in luck. Otherwise, patients with treatment clear infections will, hopefully, send the dizziness on its way.
Be sure the ear doctor would be lyme literate as many like to prescribe steroids and that can be disaster with lyme or other chronic stealth infections (as Cpn or babesia).
The objectives of this article are to cover issues related to Lyme disease that are not even-handedly addressed in the current literature. It will:
1 Present a practical approach for making the diagnosis of neuroborreliosis,
2 Explore the other side of the post-Lyme syndrome (i.e. the likelihood of chronic ongoing infection),
3 Discuss the relationship between MS and Lyme,
4 Critique the current regimens published for treating neuroborreliosis, and
. . .
-Full article at link - be sure to see the second page, too. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Cass A
Frequent Contributor (1K+ posts)
Member # 11134
posted
Dear Lymestinks,
Well, I've got those little spots on the brain, too.
I haven't had another MRI to check up on them since the one in 2007. Probably should, since I've done lots of treatments (including Mepron/Zith) since then.
My LLMD had me take lumbrokinase for many months to improve the blood circulation to the brain.
That might help you.
Best,
Cass A
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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posted
I have lesions, many of them and some are pretty big. I was dx'd with MS 12 years ago, put on Avonex (an interferon) for 9 years, then quit it.
This year I had a relapse, had a new MRI which showed the many new lesions and started taking Copaxone. I also got a positive Lyme dx. and am treating with abx for that.
My theory is that, whatever the cause, I'm having demylination in my brain, and that's not good.
I figure that taking the Copaxone (not an interferon, doesn't interfere with anything) can help slow down the demylination until I can kill the little boogers off.
I don't know how long I'll be on the Copaxone, but probably awhile since I've had Lyme 20+ years (as far as I can figure), and it'll take awhile to get rid of. It's a pain (literally!), but I think it can help my overall prognosis.
My neuro doesn't know much if anything about Lyme/neuro stuff and doesn't seem to want to learn. I'm looking for a LL neuro. My LLMD is supportive of the shots, and agrees with my theory.
Don't know if this helps you or not, but sharing our thoughts and opinions is what this board is all about!
p.s. I think I'm having my first herx! Not fun!
-------------------- dx: MS in 1998 2007 - Lyme suspected 2009 - Positive Lyme, MS worse. Now: Copaxone shots for MS gall bladder out 7/09 Ceftin, Zith, Septra LDN Acyclovir Monolaurin, DHEA, Pregnonelon, Curcumin Posts: 243 | From New Mexico | Registered: Feb 2007
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
I think many of us have the dots. Be careful with MRIs, the contrast gadolinium is very dangerous for people who have problems with toxins, metals... There is a class action lawsuit.
Posts: 1834 | From US | Registered: Oct 2008
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posted
Thank you everyone very much,I really appreciate the information. I've just been very confused with everything Posts: 18 | From tickland,pa | Registered: Jul 2009
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