posted
how do i know if i have lyme disease or multiple sclerosis?
Posts: 723 | From boston,ma | Registered: Jan 2011
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Keebler
Honored Contributor (25K+ posts)
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posted
- For those who have lyme and receive a diagnosis of "MS", "MS" is nearly always the cause or at least a major factor. Other tick-borne and other chronic stealth infections are also frequently in the mix.
Also for those with borellia & such stealth infections, many have seen either a near complete turn around or much improvement by addressing the infections, support the body, etc.
Even the seemingly classic "diagnostic" nerve fiber lesions for "MS" (which are also common with lyme) have often disappeared following assertive treatment protocols for many.
Other "hallmark markers" - "MS" attacks the myelin sheath and greatly compromises mitochondria. Well, that's lyme as well. Big time. "MS" is an umbrella diagnosis that just reads symptoms, not causes.
Bottom lyme, talk to your LLMD. Be certain they are really a LLMD, ILADS educated and beyond. They will be able to best assess the plan of action, or should know who else would be best for a referral.
Often, a LL ND is also very helpful. More detail here where the question has been asked and many have offered insight:
Also detail about other tick-borne infections, other stealth infections (such as Cpn) that can cause "MS" as well as environmental causes & complexities.
Key nutrient factors discussed, too. But good nutrients, alone, will not be enough to address the issue. -
[ 06-06-2015, 03:07 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Here is some info for you to review. Hope it helps. BTW- a number of our volunteer patient advocates and support group leaders were originally misdiagnosed with MS only to later find out it was Lyme disease. One of them speaks a little on the issue at the first link below.
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Google ms is lyme (lots of info).
-------------------- --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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posted
Ok well is there any way I could have ms that isn't caused by Lyme? Because I've been treating for Lyme for four years and I haven't had improvement, only ups and downs and an Mri showed white lesions on my spinal cord. I just don't want to miss something and go without treating for something I had all along.
Posts: 723 | From boston,ma | Registered: Jan 2011
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posted
It would be possible, but they really don't know what causes MS and the treatments are awful. They can kill you.
What does your LLMD think about the possibility?
Do your homework on this one.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
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posted
- Have you been assessed for Cpn? See detail in the MS thread about other infections to consider. Still, four years' treatment for lyme may not be enough - or the approach that is needed, etc.
You might consider a rife machine, other methods . . . just know that it could take longer &/or other approaches.
see LL author Pamela Weintraub's THREE posts here in thread "How Did Burrascano cure himself?" -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- Are you gluten-free? Why it matters:
Google: gluten, lesions
and then some study about celiac -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
quote:Originally posted by katrinab: ... I've been treating for Lyme for four years and I haven't had improvement, only ups and downs ...
I've been treating lyme for four years and it's still there as well. There are many different reasons why people don't improve, and the docs are still trying to figure them all out. So many variables to consider, and co infections to discover.
I've stumbled on some of them slowly (gene mutations, other co infections interfering, etc). It takes time to find the road blocks. I wouldn't settle on the MS diagnosis if I were you.
-------------------- --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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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
Katrinab, look into the books. "Minding my Mitochondria" and "The Wahls Protocol" The author is a MD who believes there is a trigger for MS.
She cured her Secondary MA with diet.
I am one dx MS for 17yrs (1988) before finding out Lyme & Bart & Babs in 2003. Treated 8 years. No new lesions nor non enhanced since starting the ABXs.
Haven't done abxs since 2011, still no new & non enhanced. Not saying I'm cured but all stable & repairing/recovering the orthopedic stuff
Not to be nosy but are you being treated aggressively enough?
Gluten free working wonders for me. Important!!!
PM me if you want.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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Keebler
Honored Contributor (25K+ posts)
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- dmc asks a very important question "being treated aggressively enough?" that is key. See TF's posts regarding how important that is. She floundered for a long time before finding a LLMD who really would approach it aggressively enough and in about a year, a remarkable turn around (though it certainly can take longer for others).
Assertive implies wisdom, too, not just strength or up to what you can tolerate. Is it the RIGHT approach for the infection mix you have, strong enough to work in all the very specific ways required
but also with the proper support methods for you to manage it well.
Regarding the author above, antibiotics were part of her treatment, too. Just not in the way we think of and not for the same reasons.
Her book & presentations do not mention that, though. Still, what she presents about how to nourish the mitochondria so we can heal is very good and excellent detail.
More links for her are in the "MS" thread, too, where you can see her TED presentation.
Also in that thread, see the site for CpnHELP
Also remember that there are many ways to address even stealth infection head on (not just support that can miss that part). An excellent LL ND would bed best to consult for other ways and also to help consider what ever else might be going on. -
[ 06-07-2015, 02:00 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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quote:Originally posted by dmc: Katrinab, look into the books. "Minding my Mitochondria" and "The Wahls Protocol" The author is a MD who believes there is a trigger for MS.
She cured her Secondary MA with diet.
- Slight correction or addition to her story. SHE ALSO TOOK ANTIBIOTICS!!!
Her story is not really a "cure by diet."
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Ins will cover IVIG under the MS diagnose. I would try to get on that plus oral or IV abxs Dr K in CT told me 10 yrs ago that he puts his MS/Lyme patients on high dose IVIG and/or copaxone ( which doesn't suppress the immune system)
Posts: 315 | From USA | Registered: May 2005
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Keebler
Honored Contributor (25K+ posts)
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posted
- Need we really wonder why "MS" is the more readily diagnosed term and the frequent cause lyme / other TBD / other chronic stealth infection is not just ignored but anyone who brings up the infection factor is usually just clobbered by doctors?
The same might be said for other "umbrella diagnoses" or conditions named as diseases which are actually symptoms of something else less profitable?
my thoughts above. Regarding MS drugs, be very glad that we are in tune with what's beneath a disease name. While lyme / TBD treatment is not cheap, at least it's addressing the cause and there is an endpoint to treatment in sight.
Not so with "MS" drugs required for life without getting to the cause when lyme or chronic stealth infection is involved.
- By The EDITORIAL BOARD - The New York Times - May 5, 2015
Excerpt:
. . . Drugs used to treat multiple sclerosis are of particular concern. A recent study by researchers in Oregon found that first-generation drugs that came on the market in the 1990s ranged in price from $8,000 to $11,000 a year.
Prices for those drugs rose even though new drugs entered the market, theoretically providing competition. One drug that first cost $8,700 now costs $62,400 a year.
There are no multiple sclerosis drugs available in the United States with a list price below $50,000 a year, the researchers say, which is two to three times more than the list prices in Canada, Australia or Britain. . . .
[Full article at link above] -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I have met Dr Wahls...sat next to her at a Paleo conference. She's a lovely person and incredibly healthy now, but I can tell you that she is extremely STRICT with her diet. She does not waiver.
I was doing a little MS research the other day and I find it suspect that MS is the most common autoimmune disease (would have thought Hashimotos would be #1). Yet MS is nearly impossible to diagnose. Feels a little like a reason to keep a lot of people in the medical community in business. Even the national MS associations say to rule out Lyme before diagnosing MS.
Hang in there.
Posts: 63 | From Columbus, OH | Registered: May 2015
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Keebler
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- SacredHeart,
It really is best to find a real LLMD with experience and the tenacity to succeed. He may not have the required education or experience in tick borne infections.
Yours is not a true LLMD if he "won't continue treatment after a certain period of time . . . "
Now, treatment can take various approaches but not just stop at some arbitrary point.
Also the full range of coinfections must be assessed and dealt with in on board. Be sure to include thorough liver / adrenal / neuro support matters, too. Nutritional considerations, etc.
You might post in "Seeking a Doctor" forum -- and talk to all your area / state lyme support groups for suggestions. -
[ 06-16-2015, 02:41 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- fitnesskelly,
It's well and good that, as you say, "Even the national MS associations say to rule out Lyme before diagnosing MS."
The problem is that most doctors have no clue how to properly assess or treat lyme and the full range of tick-borne and other chronic stealth infections can go with lyme.
Huge problem when so many doctors who diagnose MS are ignorant about lyme, and some are just adamantly opposed to the idea of its complexity - and the fact that treatment is often very complex and take months or years.
The CDC / IDSA criteria adopted by the neurologists who specialize in "MS" discounts, misses the mark in so many ways - starting with diagnostics, all the way through to treatment options.
They simply do not have education in the field of tick borne and stealth infections.
Most of these doctors just are either in the dark or purposely dismissive - or somewhere in between. And that becomes a personal horror story, then, to so many patients and their families. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Thanks Keebler. I set myself back, and he didn't set a definitive point to stop treatment. I found him through ILADS.
I think he took some heat from the medical establishment so he is more cautious now.
I guess the goal is just to get me off of the antibiotics and not continue the rest of my life.
I just wanted a back up plan in case I'm suddenly LLMDless. =)
-------------------- Lyme flare June, July, August of 2013. Diagnosed September 2014 Lyme, Bartonella, Mycoplasma, Mono Posts: 595 | From Texas Crossroads | Registered: Oct 2014
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Keebler
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- The goal should not be to "just to get me off of the antibiotics" but to get you well.
True, this should not continue "for a lifetime" but there is a lot of space in between.
Just because ILADS gave you his name does not mean he has even completely the ILADS physician training course or is accomplished, actually. Any doctor can ask ILADS to be put on their list and that can be a problem.
Does he practice much like Burrascano suggests in his guidelines but also keeping up with current ILADS and ILADS-connected researchers' work?
As your local lyme support groups. Make sure you have the best doctor you can who will be as assertive and complete as possible.
This doctor may be all well and good. It's impossible to tell in just a few posts - and really not the best way to determine fairly. There are multiple factors to consider. -
[ 06-16-2015, 04:41 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Amongst my research, seeing MS specialists, attending seminars and talking with drug companies i will share a very brief knowledge of the disease.
There are roughly 140 genes associated with MS. You must have one of these genes to develop the disease.
There is an external trigger - what that trigger is, (bacterial, viral, environmental, the food we eat ect) nobody knows as of right now.
If you have ever had Mono, your at a 3x greater risk of developing MS.
If you have had the mumps before the the age of 10 your chance of developing ms is almost zero.
In my opinion. MS is a very vague diagnosis for a very serious underlying chronic illness.
Posts: 17 | From Canada | Registered: May 2015
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