Has anybody been diagnosed with both? And if so, where do we find a neurologist that recognizes lyme? What is the test for 100% proof of MS?
Posted by secondtimearound (Member # 7249) on :
Hi,
I haven't been diagnosed with both at the same time but I was told by 2 doctors early on that I had ms.
This is just my opinion but I'm sure many others feel the same way, MS is lyme untreated. If I would have believed the first 2 docs I'd be dead by now, not 95-100% recovered. Just my opinion, which has been reached through experience.
As for finding a LL neurologist, you can check on the, find a doctor page. I haven't seen one but I believe Heatherkiss has seen one in NJ. Search or post for her PM and ask her the name.
All My Best, Scott
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by equinox: Has anybody been diagnosed with both? And if so, where do we find a neurologist that recognizes lyme? What is the test for 100% proof of MS? [/QB]
question 1. Lots of people on this board were MISdiagnosed with MS. 2. Rare find. Most neuros are clueless. 3. There isn't one.
Post in Seeking a Doctor for a LL neuro. There are a few out there I think.------------------- -------------------------------------------
Jonathon Wilhelms and others the strong connection of MS and lyme. Per Wilhelms: "Multiple sclerosis, or MS, is a painful disease that affects millions of people each year...Now evidence for a cause of MS sheds new light onto the terrible disease...One suspected cause is Lyme disease, a bacterial infection transmitted to humans and animals through the bite of an infected tick...Much evidence suggests that Lyme disease can result in MS. Perhaps the most noticeable connection between the two diseases is the ping symptomatology."
Also do a search here and you will find LOTS of discussions on MS and Lyme.
Posted by seibertneurolyme (Member # 6416) on :
equinox,
Have a couple of questions for you. Got your pm.
Answers to these questions may help others advise you also.
How old is your daughter? How long has she been sick? What are her primary symptoms? What meds is she on? -- you mentioned IV antibiotics - which one? -- is that the only med she has had?
Was the MS diagnosis based on MRI only or did she also have an abnormal spinal tap? ________________________________________________
MS is diagnosed by certain tests and symptoms -- it is primarily a clinical diagnosis. There is no test to diagnose it with 100% certainty.
Many other things besides MS can appear similar on an MRI -- Lyme, celiac disease(gluten intolerance) and migraines for example. The white matter lesions can be almost indistinguishable.
Another test that hubby has not done but which might be more definitive is to do a SPECT scan of the brain -- generally shows hypoperfusion (reduced blood flow) or vasculitis (brain inflammation of the microcapillaries) in Lyme patients.
The best place to have a SPECT done would be Columbia University in New York City. There is a lyme neurologist at Columbia. Lots of info on MRI's etc related to Lyme on the website.
Spinal taps can be abnormal in Lyme patients. Hubby had elevated protein once and has antibodies to mylelin in the bloodsteam -- CSF did not show oligoclonal bands for him, but others on this board have had those findings.
You did not mention coinfections. Babesia, Bartonella and Anaplasma are a few of the possibilities. It is very unusual to have only Lyme without at least one or more coinfections.
Coinfection testing is very inaccurate and is a clinical diagnosis based on symptoms. Each coinfection requires a different antibiotic.
Some people treat each coinfection separately and others treat more than one infection at the same time with multiple antibiotics.
Hubby says to not be upset or hung up over labels. His tremors looked most like Parkinson's, but when that label didn't fit the 1st 13 neurologists all said he was anxious and depressed and there was nothing wrong with him.
If your daughter is responding to the IV antibiotics that is definitive evidence that her illness is infectious in nature.
Hope she is taking most of the supplements recommended by Dr B -- see his guidelines in the Newbie Links at the top of medical.
For severe neuro symptoms -- in my opinion the most important supplements are COQ10 (minimum of 400 mg), Resveratrol (Japanese Knotweed source) and something for hypercoagulation (choice of heparin, nattokinase, lumbrokinase etc)
Antioxidants such as pychnogenol and brain boosters such as gingko or vinpocetine or feverfew can all be beneficial.
Mood swings and depression can be symptoms of coinfections or simply a result of the encephalopathy caused by Lyme.
Psychotropic meds did not work for hubby nearly as well as taking the supplements I mentioned. And of course treating the Lyme infection will help with the brain chemistry.
Sending you a pm with the name of a 2nd LLMD neurologist -- this one in Connecticut.
Bea Seibert
Posted by spookydew (Member # 8432) on :
Few years ago, doctor thought I had brain or pituitary tumor.
I was diagnosed 1yr. and 1/2 ago with lyme. Recently told that most likely have ms. I get confused and doubtful, but I have come a long way in a yr. of tx. and even further with essential oils. Now, I don't care what the doctors think any more. Just so I feel as healthy as I do now or keep improving. I thought my burning head pain was irreversible neuropathy pain and by some miracle after 11 and 1/2 yrs it has been gone 6 months and it was constant. I slept with it.
Posted by LostCityAgent (Member # 9050) on :
Equinox, You need to be very careful as not to getting a dx from a neuro of MS. If you have lyme in your blood the answer is lyme. Findings for MS are variable and non-specific. An MD specializing in Lyme will handle your problem. There is a good neurologist in Connecticut who can assist your Lyme MD in certain areas. I have multiple lesions (brain, cervical spine) and have Lyme disease. The round to ovoid lesions that are mostly seen in MS are also those mostly seen in those with neuroborrelisios (Lyme w/Neuro Affectation).
Good Luck! Jmcc.
Posted by equinox (Member # 9165) on :
Everybody who responded, THANK YOU so much. It is an overwhelming info out there. Has anyone of you heard of a super specialist in allergy testing in Dallas. Was highly recommended to me. Any experiences? This dr is supposedly world known and recognized.
Posted by seibertneurolyme (Member # 6416) on :
Equinox,
I am assuming you mean Dr R -- have read about him only. Have no idea if he knows anything about Lyme and tickborne illnesses.
Hubby went to another highly respected environmental medicine doc in Charleston, SC -- no help and referred hubby to neuro in Fl.
Hubby was much too sick to do any of the detox procedures at that time -- allergy testing confused the doc as well as he was testing things like acetylcholine (neurotransmitter) and tried hubby on substance P (your body produces this when you are in pain).
Had not been diagnosed with anything at the time other than standard answer of depression/anxiety.
These type docs are extremely expensive. Can't say whether or not would be beneficial to your daughter.
Bea Seibert
Posted by Lymetoo (Member # 743) on :
Please find an LLMD first!!
Posted by polar blast (Member # 9142) on :
there is one in connecticut and he is the best...very very smart...he knows that lyme is autoimmune...others wont believe that...he is dr k... eric
Posted by hiker53 (Member # 6046) on :
Polar Blast,
If Lyme is autoimmune, how does this impact treatment? I guess I am asking how you are being treated to get rid of Lyme.
Is it different from the standard antibiotic treatment? Hiker
Posted by equinox (Member # 9165) on :
Hi, seibertneurolyme - thanks for the input. Certainly makes sense to me. Lymetoo, my daughter has been seeing a LLMD for 2 1/2 yrs in PA Dr B who withdrew from treating her with a recommendation to a NJ Dr L. She is presently on IV rocephin, and after 6 weeks actually doing better. The only thing it's going to stop after 8 weeks. We have to find out what's next. And this Dr L insists that she also has MS. Polar Blast could you please let me know CT dr thru pm!