posted
To those of you that have lesions in white brain matter, do you know if it progresses with lyme disease? Meaning do they multiple as lyme is left untreated?
I got my 3rd mri done, and the nurse at the neuros said that nothing had progressed. So, I was wondering if those spots were really and truly migraine related and I need not worry about it?
Thank you all!!
Posts: 171 | From the land of oz | Registered: Feb 2009
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adamm
Unregistered
posted
No Lyme symptoms will necessarily get worse if you leave the disease untreated, but you're taking a huge gamble, and they most likely won't get better.
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posted
I have also had 3 MRI's and they were unchanged over 8 months. My lesions weren't typical for MS or migraines (which I have had for years). The first time my neuro looked at my MRI, he told me, "Maybe you had an infection at one time...but this is definitely NOT normal."
I have heard that some people's lesions will heal after treatment. It has almost been a year since my last MRI (and months of treatment) so I would like to have one more done just to see if there has been healing.
Although lesions can be in places "typical" for different diseases, they really can't say for sure what they are from. I guess to answer your question about if the lesions multiply if lyme disease is left untreated...mine did not over the months that I was undiagnosed. (I can only speak for myself, though)
Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
My lesions have remain unchanged through almost five years of oral and IM antibiotics. I have heard one or more patients say that IV Rocephin cleared the lesions, so possibly IV is needed?
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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I didnt know if it was really lyme if it should have progressed a little more. However, the receptionist gave me the results and was very quick with it. I would like to see them for myself.
I feel good that there isnt anymore lesions as of right now. I would like them to clear up but hey if thats the worst I end up with at the end of this, I am thankful.
My lesions were not typical for ms either. They really couldnt explain to me what they were from but then said they were migraine related. I think I would know if I had a migraine. The only thing that I had that was the WORST pain of my life was a spinal tap headache from my epideral almost 4 years ago.
I didnt know if this is Lyme if the lesions were representing neuro lyme???
Thank you again!
Posts: 171 | From the land of oz | Registered: Feb 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Why would you consider letting lyme go untreated? (There are various paths, even on a slim budget.)
Lesions may increase without treatment - or may not. However, letting a toxic infection go without treatment can have dire consequences in areas other than the spots on your MRI.
Have you been dx with lyme? Do you have a LLMD?
Yes, the lesions can be from lyme (or for some other illness or process), but you need an expert LLMD to better determine what is going on.
If you have lyme and you do not treat, the lesions are not the only indicator of the disease's progression. Other than migraines, do you feel totally tip-top with no other symptoms?
If this is lyme, with treatment, yes, some have seen lesions disappear with treatment. From what I've read, yes, the IV rocephin was the treatment. But, I'd just focus on seeing what an expert LLMD suggests.
I know this is a lot to take in and I hope you find the care you need. There are several ways to approach this but if you have lyme, treatment is essential.
First, it's best get the diagnositcs - included for the typical co-infections so you know the full range of what to address. (There is an excellent LLMD in S. Missouri.)
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" -(author's details at link)
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- Full article at link above, containing MUCH more detailed information.
-===
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in the Savely article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
==========================
This is just one article that illustrates the importance of getting treatment to prevent progression of lyme:
Persisting atypical and cystic forms of Borrelia burgdorferi and local inflammation in Lyme neuroborreliosis
===============
TESTING
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
There are a couple other good labs for certain tests: Fry; Clognen; Focus. Your LLMD will know. Some say MDL does good work (but I don't know if they test all the bands).
The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
- 2/3 down the page, you can download Guidelines for the management of Lyme disease
- In the menu to the left of their home page, you can order DVDs of past ILADS seminars. You might also be able to borrow some from your local lyme support group.
This are invaluable to understanding how these infections work. And, none of this is taught in medical schools. None.
I think I may not have asked the question properly.
I was trying to ask if the lesions may just be related to migraines as orginally told to me? I also was asking if if the lesions would progress if in fact if it is related to lyme?
I hope I clarified this for you all. I cannot exactly type out my thoughts like I mean them anymore. Things come out wrong all the bloody time now.
There is no way in hades I would leave this untreated. Thats why I am on here all the time trying to absorb as much info as my feeble brain will take.
I did get the WB done yesterday to confirm(hopefully it will confirm) that in fact have LD. I am ready to get on a treatment plan ASAP!!
Posts: 171 | From the land of oz | Registered: Feb 2009
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
OmegaBrite (very high level of EPA) is available over the internet.
It looks to tame down TNF alpha AND IL1B.
But MgCl (ideally IV) and sub (lingual) B6 = P5P maybe even much more beneficial.
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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posted
I had 2 MRIs done six months apart. White matter legions increased on the second. Both done when I was ill, but not diagnosed with lyme yet. Have not had MRI since starting lyme treatment.
Posts: 73 | From ID | Registered: Jul 2008
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