Can the brain lesions from lyme disappear with medication?

What medication works best?

How long can I expect to be on the lyme medication if I am a fully functioning person now and I have never missed work?

I was dxed with MS in 1997 and tested positive to an Igenex Western Blot lyme test in May 2005.

Is there any difference between the brain lesions found in MS patients versus lyme patients?

--YES and NO. MS lessions typically come and go over the course of several weeks with no treatment, From What I have read, Lyme lessions do not do this. Also MS lessions have a particular pattern in the area of the lateral ventricles, this is very characteritic and is the main reasin the a FLAIR sequence is done during MRI's. On the other hand it is possible that a Lyme lession can look like an MS lession, but if several MRI's are done over time (say 3 to 6 months) the MS ones will tyouically more to a different spot.

Can the brain lesions from lyme disappear with medication?

Yes, this according the publications of the group at columbia university. They have a number of MRI studies thgat show this. From what I can infer from their publications these lessions do not always go away with antibiotic treatment.

Also in some cases the lessions are permanent but the actual effect that is occuring is not known and is one of the queations being studies in the columbia lyme treatment study.

What medication works best?

I again depends. This is best left to an experienced clinician familai with neurological Lyme. In the past IV ceftriaxone was regarded as a the gold standard by all, including nfectious disease doctors. Some have questioned if this drug will resutl in the best ling term outcome but for now it is the first line agent for neuroliogical Lyme. It generally resutls in a dramatic imprivement in symptoms in as few as 3 to 4 weeks. As noted, the long erm outcome is not so clear as relapses have been recorded as occuring on many occasions.

How long can I expect to be on the lyme medication if I am a fully functioning person now and I have never missed work?

This is again best left to an experienced clinician. The regular Infectious disease Dr that is not intimately fimailiar with the long term care of a Lyme patient will go by the standard neuro lyme the cook book remedy which is 4 weeks of 2g 1 x day of ceftriaxone. This may of may not irradicate the disease byt the standard thinking of virtually all infectious disease Dr's is the 4 weeks is enough to erradicate anything (that is until then have first hand experiencece with thing like Leprosy , brucellosis and even bartonella .. as well as Lyme), Then there is the who issue of parasitic infections....

I was dxed with MS in 1997 and tested positive to an Igenex Western Blot lyme test in May 2005.

I would strongly suggest that you locate a Dr who is familar with neurological Lyme, at least on an initial consultation. If you have had it for that (1997) long you would definately be late stage Lyme. There is little if anything written about late stage Lyme diagnosis AND treatment that most Dr's would ever see. As a result they will be limited usefullness in helping with your condition if it is Lyme related.

Please let me know.

Good luck.

I am currently seeing a LL Neurologist and will be undergoing a battery of tests over the next week.

Specific to my condition, I recognize that I may not be able to get back to where I was 10 years ago. However, if I can halt the deterioration of my health, then I would consider that to be a victory.

I have not missed a day of work due to my 'MS' and many of the typical outcomes of MS, I have not experienced.

So, it is with a certain degree of cautious optimism, that I am aggressively pursuing this.

I have multiple deep white matter lesions also. They resemble MS lesions but are more in my frontal lobe than the typical MS presentation. The largest is 5 mm. I do not know how many. My neurologicist cavalierly told me, "Oh, definitely more than five, but less than 20. I didn't count them."

I, too, have never missed a day of work, though I have had headaches so severe that people speak in whispers and my phone is on low in my office.

I have hope that the lesions will lessen with treatment, or even disappear. I do understand that some may not. However, in just a month there is already improvement in headaches.

But I believe that it's not the lesion itself causing the headache but the actual infection or swelling of the brain. And once you kill the bacteria, eventually the swelling or edema will relent.

I could be completely wrong about this, it just's what it feels like to me.

I have been infected for somewhere between 2-3 years before being DX'd.

I am hopeful to make it through treatment without stopping work. (Though not claiming it will always be pretty!)

Good luck, JustMe!

Michelle M

If something does not make sense just ask me to clarify.

quote:

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Originally posted by JustMeInCT:
Is there any difference between the brain lesions found in MS patients versus lyme patients?

Can the brain lesions from lyme disappear with medication?

What medication works best?

How long can I expect to be on the lyme medication if I am a fully functioning person now and I have never missed work?

I was dxed with MS in 1997 and tested positive to an Igenex Western Blot lyme test in May 2005.

Please let me know.

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JustMeInCt:

I also have brain leisions. I was told by my llmd that they do not go away with tx.

I had two spect scans and the second one has improved with antibiotic treatment.

I've been to 4 neuro's and one neurosurgeon ....One neuro specializes in M.S. and told me it was not m.s..

At the time I had three lyme test, and they showed negative... including my western blot.

It was after antibiotic treatment that my w.b. came up positive by c.d.c. standards.
Which was sent to a reputable lab that time!

That other lab that my w.b. was done, they also lost my lumbar puncture, and the jerk didn't even call to tell me!

My friends and co-workers asked me to call him. I can't say what I said to him! I'm sure you can guess though! He runs an m.s. clinic.

I was told by my old p.c.p. that he told her that he was worried that I would sue him.
That never entered my mind, but my family sure was pissed! Not to mention my friends!

I waited six weeks,and ended up calling
Cambridge and California to find out about the test.... they said they sent it weeks ago!
He expected me to locate the test myself, and I told him to do his own foot work, I'm the one that's paying you!

As of right now... I feel great!!!
I haven't felt this good in five years!
Hoping I'm not jinxing myself.

I've regrouted my kitchen tile, put a first coat of kilz on my kitchen and dining room, and I'm still doing great!

My son is arriving today, and this will be his last time before he leaves for Iraq.
You know what they say about stress and lyme! So hoping I can hold it together.

I am on three biaxin, and two plaquenil.
I also am taking a new sleeping pill... think maybe it could be for anxiety too.

The psychiatric was the worse! Llmd said I had a worse case scenario. I do believe the Temazepam has helped my immune system fight better! I also have been taking wellbutrin xl.

I know some people have jumped on me about not taking vitamins, but I eat a balanced diet, and I feel any extra would be excreted.... i don't have that kind of money anymore!

I did work three years while on treatment, until an injury at work put me in a downward spiral. I had to take early retirement because I needed my insurance, and used up all my sick leave... couldn't afford colbra for too long.

Soooo just thought I'd share my good news, and know all of you will also.

It's trial and error as far as different meds. I think time and patience! Let things go,and get your immune system strengthen.

Doc H. told me there is little way to tell if the lesions are MS or Lyme. I asked him this a while back, so maybe the answer has changed.

I went to a regular neurologist down here to be sure that MS is not an issue for me. I told him about the lyme, and of course he looked at me like i had two heads, and he siad he will not treat lyme he knows nothing about it, I told him i didn't want him to treat me, i have a great doc. I just want him to check me for any other neuro. stuff just in case, since tingling, wierd sensations, and spasms sx are a big thing for me.

He did a quick neuro exam and said i was fine. I told him about the urinary problem i am having and that this is what prompted me to go to him.

He said he would just give me an MRI of the brain to appease me, and one of the lumbar spine, as i had an accident 10 years ago, and he feels my discs are damaged and this is causing some of my problems.

So off to the MRI today, back to the urologist on Thursday. I know what you are going through...good luck with everything, and keep us posted!

Jellyfish

quote:

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Originally posted by jellyfish:
Hey JustmeinCT...i wanted to know how you were doing with all your tests this past week. Hope all is well!...jellyfish

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Thank you for your inquiry.

I view this positively as the reason I am pursuing this in this manner is to get as much information as possible before making a decision.

It seems like over the past 2 weeks, that I have been poked every which way and the MRI is my new best friend.

I am not sure how things will turn out, but the journey so far has been interesting.

I have been working with two LL neurologists in this regard, seeking a second opinion, after seeing Dr. P.

It has been very interesting the different lines of medical questioning each doctor has taken and the fact that they have not order any overlapping tests.

I should have their opinions by mid-July.

The question then is should I go back to Dr. P or let one of them treat me.

Please let me know what the proper protocol is.

Thank you.

I had a ski accident in 1992 which resulted in my T-11 vertebrae being fractured. While had a sucessful recovery from the accident, I always thought that more damaged had been done to me that was had been obvious at that point - particularly since I still have a dull pain from that part of my back.

The LL neuro that I went to 2 weeks ago said that there was a different in brain lesions akin to MS very Lyme. Also, there positioning on the brain is important.

I am trying to get an MRI done for my spine this week as well as two other tests that have been ordered that require insurance approval.

After this is all done, I will be seeking recommendations from all the doctors involved in this epic. I am also going to go back to my MS neuro with all the additional data and try to pic his brain on this.

My goal is to put myself into a position where my health stops worsening so that I can plan for the next 40 years of my life.

At that point I knew I had fibromyalgia syndrome, but was not aware that my symptoms were due to Lyme Disease.

One year ago I had another MRI of the brain. This time, there was only one "bright spot" showing. The doc had no explanation, but thought that antibiotics may have cleared them up. But I wasn't on antibiotics!

The "bright spot" lesion is apparently scarring from an injury, such as a TIA (transient ischemic attack, or small stroke).

I just thought you may be interested in the info about the lesions.

Between my first brain MRI in 1997 and the second in 2003, I added 2 new lesions..both small in size, under 5 milimeters.

I had another brain MRI last week. It will be interesting to see how many, if any, new lesions I have.

In reading your response as well as other poster's comments, it appears to me that there is no rhyme or reason to brain lesions and that each case is different.

Right before the MRI, I had completed 4.5 months of Saventaro, followed by six weeks of Dr. Zhang's protocol (not the allicin).
I did six more weeks of Zhang's protocol after the MRI.