posted
Did you ever get your MS diagnosis taken away?
I have "had MS" for almost 10 years. I had several treatments of IV steroids and took Avonex for about 5 years. I have had my amalgams removed. I have delayed food allergies to gluten, dairy, soy, legumes, eggs, and peanuts so I do not eat these. I am doing pretty well overall.
Our new family doctor ran a lot of tests on me and my CD57 is 51 (Labcorp western blot is negative which at this point does not mean much). Now I am wondering if maybe I have Lyme and not MS.
The plan is to add in some supplements (mostly amino acids) to strengthen my body so it can start to make antibiodies and then run the IGeneX western blot.
--Judy
[ 10. July 2008, 12:20 PM: Message edited by: JudyEric ]
Posts: 67 | From Maryland | Registered: Jun 2003
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ByronSBell 2007
Unregistered
posted
Sound like lyme to me especially after seeing your CD-57 test, shows something is hurting your immune system.
If you have all those food allergies, you most likely have a leaky gut which needs to be healed.
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posted
Fortunately (or unfortunately) I have been reading about Lyme off and on over the years. My son was initially diagnosed (with a bulls eye rash) in 2002 and we worked with a LLMD for over 1 year. This past year we learned he has chronic Lyme, and most likely Bartonella and Babeisa.
So at least I know this will be a long term project.
--Judy
Posts: 67 | From Maryland | Registered: Jun 2003
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
I was diagnosed with MS. After a few years, found that it was not MS, but Lyme and company.
So - yes, it's possible!
And I do think, as well, that MS can be secondary to Lyme. In which case, getting to the root cause would be the goal.
You're welcome to pm me, if it would be helpful to talk to someone who no longer has the MS diagnosis.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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posted
I am in the MS club too. My dx was "probable MS".
I took rounds of steroids and IV solumedrol. That was a blast.
I have since had many seconds, third and fourth opinions. Each new neuro says no MS.
It's a shame though. I can't get it removed from my life insurance policy. Once they give you that dx it sticks with you. I even have letters from neuro stating I don't have it.
Anyway, I have been treating lyme for 2 years. Some good months some bad months.
posted
Over the years I have seen 8 neurologists. One "MS specialist" was not convinced it was MS until she ran MRIs of my spine and found spinal lesions. Unfortunately she left her practice. She was the only one interested in learning that some of my neurological symptoms decreased after I removed gluten from my diet.
My last MRI showed that my spinal lesions are gone. So at least all of the self help I have been doing over the years has resulted in some healing.
--Judy
Posts: 67 | From Maryland | Registered: Jun 2003
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Did you get tested for Babesiosis Antibodies as well aas your son? I believe that co-infections like Babesiosis can take down the immune system, as well.
I wasn't able to get a positive blot until after Treating my Babesiosis Twice and then around 3 months of 300mg/day of Doxycycline. It also seems that I have other co-infections.
I was doing quite a bit better & then my LLMD allowed my neuro-lyme to go unaddressed (oral Azithromycin doesn't really cross the BBB) for about 6 months, 4 of them with NO ABX AT ALL.
That led to developing Optic Neuritis and sypmtom flares with temperature elevation (Ufthoff's Phenomenon). I was told by the Neuro-Ophthalmoligist that I likely have MS secondary to Lyme.
I went to another LLMD, while my LLMD had me waiting for 3 months for another appointment & got some tests ordered.
I had a SPECT scan which was consistent with active neurological Lyme. I also had bloodwork/urine samples sent to the specialized labs.
The urine Lyme antigen - dot blot came back positive from one sample (I understand there's only about a 44% chance of that, best odds are with 3 consecutive samples)
My CD-57 was 1% & the count 26, consistent with chronic Lyme.
I am waiting for the rest of the results to come in for WB & co-infections, but that was sufficient for my LLMD to step up my treatment ASAP. The PICC is being ordered and I am now on Biaxin which will be the first I am being treated with combo ABX.
You are at an extra disadvantage because Lyme has free reign while you are on steroids. You might benefit from an ABX trial to see if you have a herxheimer reaction (worsening of SX or new SX due to the toxins released by spirochetes when they die off)
If you have had to take ABX for any reason, please know that it is NOT normal to feel worse before better. I had actually come to think that's how ABX worked. I thought the bacteria would get agitated before it would actually die or something.
It would probably be a good idea for you to see a Lyme-Literate Neurologist for a second opinion. You can post in seeking doctors for one near you.
They have a MUCH better chance of finding the markers for MS in an LP than they have of finding Bb. I won't get the LP done because then my insurance company could use that against me. The confirmatory MS Dx will not change my treatment, so it makes no sense to pursue it.
Many people don't recall a tick bite or if they do, they think that they didn't get Lyme if they didn't see a bulls-eye. If you weren't tested for co-infections, you should be.
sorry you're going through this
Ali
PS - It would seen that many Lymies develop food allergies and gluten intolerance.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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posted
Just read a slide presentation given by an LLMD at a Lyme conference. Includes the following statement
"Lyme patients with features of MS, ALS, PD, severe chronic depression have Babesia until proven otherwise (current test are not sufficient as proof of absence).
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
If you've not seen this article by an ILADS neurologist, I hope it helps. You might contact her office regarding any current updates or other current works that may be relevant. I will PM that phone number to you if you want it.
CONTROVERSIES IN NEUROBORRELIOSIS - by Audrey Stein Goldings, M.D.
Updated October, 2002
excerpt:---
The objectives of this article are to cover issues related to Lyme disease that are not even-handedly addressed in the current literature. It will:
1 Present a practical approach for making the diagnosis of neuroborreliosis,
2 Explore the other side of the post-Lyme syndrome (i.e. the likelihood of chronic ongoing infection),
3 Discuss the relationship between MS and Lyme,
4 Critique the current regimens published for treating neuroborreliosis, and
5 Present my own approach which may differ from some leading authorities.
``Anyone who, in discussion, relies upon authority uses not his understanding but rather his memory.''
--Leonardo da Vinci, Notebooks (c. 1500)
It is hoped this data will provide the reader with a broader understanding of neuroborreliosis so that he or she may better use current and evolving knowledge for clinical decision making.
=======
- The full two page article at link above. Be sure to see the second page, it can be overlooked.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
This information may also be relevant. I recently had tests for Cpn come back sky high. As with lyme, not all labs are equal and IgA, IgG and IgM should all be done.
Treatment is similar to that of late-stage lyme as Cpn also has several stages and forms and requires combination treatment over time.
And, as with lyme and TBD, chronic Cpn is not a topic well known by many doctors. It is complex, but many who follow the Vanderbilt (Stratton) or the UK (Wheldon) protocols seem to see improvement over time.
At www.cpnhelp.org there is also more about the connection of Cpn and MS symptoms.
This excellent article explains a lot about what chronic neuroborreliosis can do. It also details other chronic stealth infections, such as Cpn - and others - that should also be assessed in all chronic patients, especially those with neurological symptoms.
posted
I was originally dx with MS also (1991). That was
after 7 years of being ill and not being believed
by countless drs that there was something wrong.
I was treated for MS with copaxone for 8 years,
luckily I never took steroids.
I became so weak, and in so much pain 7 years ago.
The highly regarded neurologist that I was seeing
at a very well thought of MS center in NJ did
nothing for me. She wanted to hand me pain pills,
and said that MS sometimes took this course.
When I told her that I was seeing Dr.E, our first
llmd, she told me it was a waste of time. I did
not have Lyme, according to her. At my next visit
with her I brought my Igenex labwork showing
that I indeed had lyme. She walked out of the
room. Did not say a word, just left. I had at
that point been her patient for nearly 11 years.
If there is anyone I would wish this on it would
be her.
I have been ill since childhood. My guess is that
it has been lyme my entire life.
I don't think that I have MS. I have not gone
back to this neurologist. My llmd sent me to
a neuro back in dec'07. Again, came highly
regarded and respected. Never got a follow up
with her. They could not find my file!
I have said it before, and some of you were
very kind to send me pm's of neuros you like,
but I just can't trust a neurologist.
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
People, you all must know by now that MS is not a true disease but a symptom...whether caused by Lyme or Chlamydia pneeominia, a virus whatever our immune system is fighting something.
"This means that it is primarily an autoimmune disease. Virtually all autoimmune diseases are caused by microbes getting into places the immune system cannot kill them.
The attempt of the immune system to kill the microbes is what causes the inflammation."
My MS is lyme induced. Lyme & Bartonella...went 17 yrs before going to a LLMD.
Helps if going for disability (how sad is that)
Posts: 2675 | From ct, usa | Registered: Jan 2004
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