Follow up didn't go so good, and now need feedback from yall

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Postby bartman » Sun May 29, 2011 7:56 am

Had to laugh for a second. In true MS neurologist fashion, they completely ignore testing for Lyme, CPN or any other infections. Not only that but it seems that there are now 2 new preferred misdiagnosis's commonly misdiagnosed along with MS. They are NMO (neuro myelitis optica) or I'm surprised you didn't also get a transverse myelitis.
This just made me laugh because when I went with my cousin to his new NeuroOpthamologist appt. 18 months ago, with all the positive infectious blood tests we had in hand including CPN, MycoPn, Babesia, Lyme (didn't have pos. bartonella yet) the doctor still completely ignored the results and insisted we test for NMO and TM. I literally laughed in his face.

I feel for you and I'm really trying to help you, but you must be your own advocate and insist he test you for infections. It is a scientific fact that Lyme or any infection can cause lesions in the brain that show up in an mri. Again, I don't dispute you have lesions in the brain, which way you decide to go is up to you. I would love to hear what your doctors response would be if you asked him to prescribe Copaxone.......+ Minocycline. Tell him this will cover me for both an infection and MS and there is good science to support that it is very effective. He would probably drop you as a patient.
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Postby shucks » Sun May 29, 2011 8:44 am

I had a negative lyme titre, negative NMO, and I'm waiting on a couple others to come back.
"A gun is a tool, Marian; no better or no worse than any other tool: an axe, a shovel or anything. A gun is as good or as bad as the man using it. Remember that." -- Shane

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Postby bartman » Sun May 29, 2011 10:54 am

Did you do a Western Blot lyme test? or just the elisa?
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Postby shucks » Sun May 29, 2011 11:08 am

Just a lyme titre for all I know. My Dr said he has never seen a case of lyme that was actually gotten in SC, though we have the tick, but checked it anyway.
"A gun is a tool, Marian; no better or no worse than any other tool: an axe, a shovel or anything. A gun is as good or as bad as the man using it. Remember that." -- Shane

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Postby bartman » Sun May 29, 2011 11:19 am

If that is your doctors answer than you need to educate yourself. He likely gave you the Elisa test which is the most unreliable inaccurate test for lyme and MISSES 80%-90%. The guideline that neurologists use are the same as the IDSA. It says that first you give patient the Elisa test and if that is positive than you give them the Western Blot test. And if that is positive than you have lyme. The Western Blot test is just a little bit more accurate. It MISSES 60%. To a neurologist Lyme is a dirty word, they want nothing to do with it and they don't give a crap. Had I known what I am telling you now, it would never have gotten so bad.

Your doctor tricked you, when he knows damn well the test is unreliable! Please educate yourself on Lyme testing and the Western Blot test itself regarding specific bands. PLEASE, PLEASE, PLEASE.
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Postby carolsue » Sun May 29, 2011 12:03 pm

Lyme disease supposedly doesn't exist in Montana either, but I know of someone in Montana who FINALLY got diagnosed with it.
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Postby shucks » Sun May 29, 2011 1:44 pm

Doc told me that he would give me Doxycycline just in case and I did a 2week cycle to help out if it was a false negative. Just after i finished the cycle, i had this latest relapse that doubled my trouble.
"A gun is a tool, Marian; no better or no worse than any other tool: an axe, a shovel or anything. A gun is as good or as bad as the man using it. Remember that." -- Shane

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Postby bartman » Sun May 29, 2011 3:53 pm

2 weeks is nothing! You need months and combination therapy. In fact, if you took 2 weeks and got worse than you likely have LYME. You need minimum 200mg doxy twice a day. Honestly, now more information is coming out from you. You mean he did you a favor and gave you 2 weeks just in case. How thoughtful of him. You do understand that Lyme treatment is the biggest controversy in medicine and aside from the testing, dosing and duration of treatment is the heat of the debate. One side, the IDSA says 3 weeks is enough, the other ILADS, says treat until you are better. People take DOXY for years for acne. Your doctor just in case gave you only 2 weeks, how nice not even long enough per the questioned accepted guidelines. States are passing laws allowing doctors to prescribe antibiotics for lyme for as long as needed to protect the doctors from medical boards. Shucks, you probably a very good person here is what you do. Call your doctor and request that he give you a new lyme test , the Western Blot. Now that you have done 2 weeks you are more likely to have brought the infection out and might test positive. You have to retest for lyme often, the sickest people don't test positive for awhile. But a western blot will show you specific bands and this is important. Be sure to get a copy of the test in your hands to see it for yourself. Then tell your doctor that just in case you have lyme that you would like to treat it atleast by the IDSA guidelines atleast 4 weeks and you can handle a large dose, trust me 400mg is much better than 200mg and you can handle it. Your reaction to the 2 weeks of DOXY says alot, it says you have Lyme. What you are experiencing is called a HERXHEIMER REACTION. Look it up. You need prolonged treatment. Find yourself an LLMD (a lyme dr) on ILADS or turnthecornerfoundation.org. This is the disease you have know idea how sick you really are. Since the tests are so unreliable, its often the reaction to the antibiotic that the diagnosis is made and clearly you had a reaction, you stopped the doxy to soon. You really need to educate yourself on Lyme.
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Postby shucks » Sun May 29, 2011 4:01 pm

When I asked the 2 neuros and my GP about lyme, which I was convinced i had for most of this time, as I spend tons of time outside hunting/fishing/etcf. they told me that the ON I had in 2004, the negative titre, and these lesions meant lyme was ruled out, even though it is atypical due to spinal lesions only.
"A gun is a tool, Marian; no better or no worse than any other tool: an axe, a shovel or anything. A gun is as good or as bad as the man using it. Remember that." -- Shane

Who is John Galt?
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Postby Loriyas » Sun May 29, 2011 4:48 pm

Shucks
Just another idea if you are interested: go to www.CPn Help.org and learn all you can about antibiotic protocol. Just my 2 cents!
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Postby jimmylegs » Sun May 29, 2011 6:24 pm

also, relevant nutrition tests would be vit b12, vit d3 (25(OH)D3 that is), zinc, magnesium, selenium, and vit e.

for good measure, uric acid and NH3.
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Postby bartman » Mon May 30, 2011 6:09 am

Shucks,
Let me just tell you something, Doctors are wrong all the time. ON can be caused by an infection including lyme. Nothing just happens by itself, somethings causes something to happen. If you have been out in the woods, hunting, fishing and you thought you had it yourself go with your instincts. Like I said, your reaction to the DOXY is typical Lyme. When my cousin first started Minocycline...three weeks later he went back to the MS doctor who shot him up with 3 days of steroids and downgraded him to SPMS. I had been away for that appt. and I was furious because I knew it was a herxheimer reaction from an untreated 12 year infection. It is now 2.4 years later and he still takes the Mino and his eye is just about fine. Thank you Loriyas for getting it! I truly don't know how MS doctors sleep at night because they know and they ignore. You need the DOXY or Mino. Thtas why I tell you if he wants to give you MS make sure you choose the Copaxone + Minocycline combo. Then you are covered for both until your able to add the rest of the Wheldon protocol. Listen to Loriyas, she knows.
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Postby ssmme » Mon May 30, 2011 12:10 pm

Have you had a lumbar puncture? If so did they find oligoclonal bands? That's what secured the ms dx for me. My ms doc told me (whether right or wrong) that only brain lesions could be lyme but spinal cord lesions are ms.
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Postby shucks » Mon May 30, 2011 12:44 pm

No LP, they told me that there was enough other things going on not to need it.
"A gun is a tool, Marian; no better or no worse than any other tool: an axe, a shovel or anything. A gun is as good or as bad as the man using it. Remember that." -- Shane

Who is John Galt?
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Postby bartman » Mon May 30, 2011 5:01 pm

Two things. First, what is MS? It just means multiple sclerosis or many scars. To say that a lesion on your brain is lyme and a lesion on your spine is MS is ridiculous. It's like saying a scar on my face is different than a scar on my leg! Here's the difference. In the brain there is more room, it's more elastic so if you have a lesion and stop the infection(which I believe is the cause of these lesions)the blood can flow around the lesion and it's capable of healing just like getting stitches, the wound heals and over time the scar fades away and gets lighter. So, you have a scar on your face, or in your brain but there is more room to heal. In the spine, the nerves are compressed a lot tighter together to fit in the spinal canal, so there is less room for blood to flow around and remyelinate or heal. So, if you get a lesion on your spine it's going to affect your walking and use of your limbs. I suppose that my definition of MS was just that, losing your functionality with your limbs. When my cousin was so fatigued, massive headache, raging, anxious I said to myself something wasn't right, this isn't MS as I thought it to be and the rest is history, I discovered Lyme, Bartonella, and Babesia and damned if I wasn't right. Truthfully it was the easiest diagnosis ever, but the hardest 27 months of our lives. The MS doctors still insist he has MS despite a plethora of positive test. There is no MS test and an LP does not provide any definite information. Fortunately, my cousin had lesions in his brain and just a small one in his spine. He is much better, but still not great yet! My point is that a lesion is a lesion there are better places to have them that are easier to heal but saying one is MS and one is lyme is quite honestly silly. It's my opinion that MS is infection related and Lyme is involved. There is also a growing amount of science pointing that direction.
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