posted
Hi there! So, I've had CFS and Fibro (well, at least that's what my dx is) for 35 years. Recently I started getting screeching peripheral neuropathy, and one of my eyes went blurry, so my largely ineffective and not LL GP is sending me to a neurologist to get an MRI and tested 'for MS' - maybe a spinal tap too.
I haven't yet had my Igenex testing - but clinically, but do fit the clinical picture of Lyme. I also fit the clinical picture for Fibro and MS - maybe.
My fear is that if plaque is found on the MRI, I will automatically get the MS diagnosis slapped on me - and potentially get sicker from steroid treatment And treatment for potential LD will be delayed. And I'll be even More confused about what I have. So, I don't even know if I want to get the MRI. I'm so scared.
The neurologist I'm being referred to, fyi, is a young doctor out of UCSF. She now practices at Sutter in Santa Rosa. I have no idea about the training neurologists at UCSF get - and if it includes trying to be impartial when it comes to Lyme vs. MS.
Help? What would you do? Does anyone know a LL neurologist near me who takes medicare? Headbang! Thoughts? Jokes?
Thanks, Karrot
.................................................. breaking up a paragraph here for easier reading for many here
[ 08-03-2014, 02:03 PM: Message edited by: Robin123 ]
Posts: 5 | From Sonoma County, California | Registered: Aug 2014
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Keebler
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- Even if you have the MRI and they see "things" and declare you to have MS, that can still be lyme.
The diagnosis, though, of MS could serve you in some capacity to obtain CERTAIN treatment that may be covered. Of course, you are correct in that all too often they slap steroids into your hands, or other treatments that are not going to be correct for lyme.
Just to be sure, steroids can make lyme so, so much worse. Sounds like you know that but just want to be sure.
But YOU have control. You'd just have to get real savvy about it and never pass out in the company of doctors who don't have a clue about lyme and only think of MS, etc.
You need to stay in control about ALL your choices. If you need help in how to talk with any doctor, ask someone in the support groups to work with you. We can always gather the detail and then just say, you'll give it some thought. Keep your running shoes on and tied, though, so you can just slip on out, so to speak.
You say you'll have someone else drive you. Unless you trust them totally, don't tell them all this in case they happen to be in a doctor's office / waiting room with you say something they should not.
Don't let anyone into your doctors appointments unless you trust them with your very life and you can totally trust they can screen before they speak and are totally LL and get the picture crystal clear.
You can get the MRI, see what it "says" . . . still if you could get a LLMD first, they could suggest where to get that MRI that would have a better chance of being done properly and read properly. Most doctors / radiologists don't know how to interpret for lyme.
And an MRI is not really necessary.
Spinal tap. You sound like you already know that they love to do that for MS assessment but
it is NOT, NOT a proper test for lyme with very low specificity.
YOU can say "NO" not going to that party. I said that. One of the best choices I made when I was told that I probably had MS and the doctor actually said "it would be fun to do a spinal tap and really see what I suspect is true."
I told him he could go to that party without me. I never went back to him.
Hey, about assessment / treatment if this is lyme or other tick borne infections, one step at a time.
LymeDisease.org - based in California so the cards are stacked there in your favor. Somehow, you may be able to patch this all together.
In the meantime, a gluten-free diet may be of help, at least to some degree. If you are up to dairy-free, too, that might give you another advantage as you sift through all this. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Judie
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You don't have to do any treatment you don't want to do.
I'm sending you the name of a LL neurologist in San Rafael. Maybe she takes your insurance.
The plaque is still there with Lyme. There was a question about this posed a month or two ago. I can't find the thread. It was a friend who posted it. She's in the same boat. She was diagnosed with MS because of the plaque and wondered if it could be there with Lyme.
I think maybe Marnie posted some medical info.
Posts: 2839 | From California | Registered: Jul 2012
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Keebler
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- In addition to links Judie may post later:
Also detail about other tick-borne infections, other stealth infections that can cause "MS" as well as environmental causes & complexities. -
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Keebler
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My opinion is if you have good insurance and can pay the copay then get the MRI. If it shows plaques it can help an LLMD to decide how aggressively to treat - orals versus IV for example.
Or a 2nd option would be to see an LLMD and let them decide whether or not you really need the MRI. If you have the scrip for the test you can wait and schedule it at your convenience. Pretty sure the scrip is good for a year. And actually you could do the test and then not go back to the neurologist, but have the test results sent to your new LLMD.
I think there is a new law that says patients can get test results from the labs directly anymore which could save you a follow-up appointment with the neuro.
As to the spinal tap - you might want to wait on that as well. It is not a good test for lyme. Even if you had it done you would want to have the spinal fluid tested for lyme to get as much info from the test as possible - but the neuro probably did not include those instructions on the orders.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Phoiph
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posted
FYI, here is a link which compares MRI images of different neurological conditions, including MS and Lyme:
Keebler
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posted
- You may not need a neurologist. Best to be evaluated first by a LLMD, anyway, if at all possible. Most neurologists are useless for someone with lyme. They don't know enough (about lyme and TBD) and follow the erroneous IDSA to the letter.
I think there are only about two LL neurologists in the whole country. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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My opinion though after reading this is these are Lyme symptoms and you need a Lyme doctor.
Re eyes, I saw an eye doctor and tested normal even though I was developing blurred vision. That's what Lyme can do to the eyes. My chiropractor suggested I drink mangosteen juice and it worked! I have no more Lyme eye symptoms as a result of drinking about 1 oz daily.
It's an anti-inflammatory juice that scarfs up all the free radicals created by inflammation. You can find it in health food stores and online. I like the Mango-Xan version as it's the most tart. We're all different in what works for us.
Healing is a step-by-step process, even to find out what works for us. It takes patience, and watching to see what works.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
judie, could you please send me the LL neurologist too. I have the ms/lyme diagnosis too.
Posts: 857 | From northern california | Registered: Dec 2009
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Catgirl
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posted
I agree with Keebler, see an LLMD instead. Whatever you do, don't go down the steroid path. I have a friend who did this and it made him worse. He took all the meds they normally put people on and just went downhill.
So he gave it up and went with some type of PEMF mat, and is better now. But lyme treatment would have helped him for sure (he didn't about lyme).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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You don't have to do any treatment you don't want to do.
- Amen. Stay away from steroids! And stay away from spinal taps. They are invasive and dangerous .. and tell you very little if anything about Lyme.
I hope you will allow a good LLMD to evaluate you. They are very knowledgeable about illnesses that mimic Lyme.
Neurologists know just about zero about Lyme.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Rumigirl
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quote:Originally posted by Lymetoo:
quote:Originally posted by Judie:
You don't have to do any treatment you don't want to do.
- Amen. Stay away from steroids! And stay away from spinal taps. They are invasive and dangerous .. and tell you very little if anything about Lyme.
I hope you will allow a good LLMD to evaluate you. They are very knowledgeable about illnesses that mimic Lyme.
Neurologists know just about zero about Lyme.
Yup, you need an LLMD ASAP. Since someone did say that they knew a LL neuro in your area, you could do that, too. But the main priority is an LLLMD.
Unfortunately, Keebler is right (as usual), that there are really only about 2 LL neuro's in the country, if that.
Personally, having had really bad MRI results from Lyme, I would recommend getting it, if it is covered, as Bea said. But you might wait to see your LLMD first. If it is ordered WITH contrast, you would see if any damage that shows up is recent or not.
Yes, that exposes you to the contrast medium (gladiolium), but it is useful information IMO----at least it would have been for me, if it had been ordered, which it was't. I still wish I knew when the damage occurred, considering that it is sooo bad, but I don't know now.
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Judie
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Can someone send me the names of the two LL neurologists in the country? I know some people who could use the resources.
Thanks!
Posts: 2839 | From California | Registered: Jul 2012
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posted
not just the steroids can be hard on you. If you are diagnosed with MS, the MS meds can be very difficult to tolerate also. I tried 3 different ones and it made me much worse.
Posts: 857 | From northern california | Registered: Dec 2009
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Keebler
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- lpkayak,
You asked if lyme is the exclusive cause of MS.
I do not believe it is. I think it is the most prevalent cause, by far and that everyone with "MS" diagnosis should be carefully assessed by an well educated in lyme / TBD doctor.
However, I do believe that various other chronic stealth infections can also be a cause &/or co-factor along WITH lyme / TBD (tick-borne disease).
Chemical exposures / damage, Nutritional influences, perhaps, too. Other possibilities are discussed in the "misdiagnosed?" thread many posts above.
Back to Cpn, though. It has been found to be a direct cause (Wheldon & Stratton).
Although, Cpn & Lyme & TBD often do coexist. Much detail here about Cpn being at the root of "MS" and Cpn treatment has helped many with misdiagnosed "MS" -- the treatment protocol is very similar to the expanded lyme protocols.
Cpn Help - systemic, chronic chlamydia pneumonia -
[ 08-07-2014, 12:45 PM: Message edited by: Keebler ]
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Phoiph
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posted
It is not only known that spirochetes are found in MS brains upon autopsy, but MS cases correspond geographically with the distributrion of Borrelia-carrying ticks:
"...worldwide, MS prevalence parallels the distribution of the Lyme disease pathogen Borrelia (B.) burgdorferi, and in America and Europe, the birth excesses of those individuals who later in life develop MS exactly mirror the seasonal distributions of Borrelia transmitting Ixodes ticks. In addition to known acute infections, no other disease exhibits equally marked epidemiological clusters by season and locality..."
Keebler
Honored Contributor (25K+ posts)
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posted
- Phoiph,
Great find, there. Usually, they post more detail about the location / institution of author. The journal name won't go anywhere with a click.
The author's name does come up with a few Google search results but no immediate way to see where she / he is.
Clicking onto the name there at PubMed, we can see lots of other research articles they've authored or co-authored, though.
This is exciting, even if a dozen years old, I was just hoping I could find out more about this author who seems to know what so many fail to find or acknowledge. -
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Keebler
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- I found it the original link & affiliation, he's in Switzerland.
I do not know why this keeps popping up and blocking me. The URL looks normal to me.
"Sorry, we do not permit the following HTML tag or attribute: Parenthesis in HTML tag" -- well, the URL does have a ( ) in it. So, what?
So, use Google, Advanced Search to keep the entire title together. Then find the URL with medical-hypotheses.com in it. Or search at their home page.
Ideally, I'd also search for more from his institution / affiliation - curious as to where they all stand on this today and their standing - acceptance of sorts, other peers who see eye to eye on lyme - in their community / Europe. But all outta steam.
The U.S. IDSA as a lyme "authority" (which is is NOT, in case anyone is new here) has also gotten a foothold in Europe. I just want to see some signs of intelligent life, anywhere, for hope that truth will shine and not everyone, everywhere is brainwashed by the IDSA on this matter.
A wonderful exception, though, is ILADS, of course, (my words and brain won't let me say what I'd like here so "correct" is all I've got).
For those who may be new, ILADS (not IDSA) is the "correct" professional organization based in U.S. but also with some educatonal conferences and members in other countries, too.
Why that protein maybe mutated and activated when it shouldn't be is up for study!
I have a friend with MS...she has 3 healthy children...no HERV-W placental problems when carrying those children.
IL-15 is a very dangerous cytokine which is upregulated in lyme too...
"B Cell-Derived IL-15 Enhances CD8 T Cell Cytotoxicity and
Is Increased in Multiple Sclerosis Patients
Exposure of CD8 T cells to this cytokine enhanced their ability to
kill glial cells
as well as to migrate across an in vitro inflamed human blood–brain barrier.
The elevated levels of IL-15 in patients relative to controls, the greater susceptibility of CD8 T cells from patients to IL-15, in addition to the enhanced cytotoxic responses by IL-15–exposed CD8 T cells,
stresses the potential of therapeutic strategies to reduce peripheral sources of IL-15 in MS."
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