posted
You have several Lyme-specific bands there. Band 39 is VERY important.
Moving to Medical Questions for more help.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
That 39 is a huge clue. But that's a pretty obvious positive.
I think the question you might want to ask yourself is whether you have true MS triggered by lyme, or if you have lyme misdiagnosed as MS and want to try and reverse it.
posted
Thanks peoples. Droid1226, that is the questions I have been asking myself. Is anyone on here from Canada?
Posts: 17 | From Canada | Registered: May 2015
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- There are a couple folks here from Canada. You might post a new thread in "General" if you want to call them to you!
Diagnosing Lyme Disease (&/or whatever else is going on)
Other tick-borne infections and other chronic stealth infections - as well as certain conditions that can hold us back - are discussed here. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- in light of your comfirming droid's brilliant observation:
" the question you might want to ask yourself is whether you have true MS triggered by lyme, or if you have lyme misdiagnosed as MS and want to try and reverse it." (end quote)
Very often, MS is a misdiagnosis. The symptoms are misinterpreted and really most MS symptoms are very much neuroborreliosis symptoms.
Brain lesions, thinning of myelin sheath . . .all of it, any of it, can have lyme or other stealth infections as the CAUSE. When that is treated and appropriate supportive action taken (nutrition, liver protection, etc.), many with previous MS misdiagnoses have found health again.
In those who have developed "stronger" cases or damage or for other reasons, MS, when lyme is identified and treated, they often get much better even if there may be other matters to manage.
When you find a good LLMD, they will better be able to gauge in your particular case they will be able to tell you more.
OTHER tick borne and chronic stealth infections need to be considered, too. Lyme rarely travels alone. The diagnosis thread above covers this.
Best of luck to you. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Also detail about other tick-borne infections, other stealth infections (such as Cpn) that can cause "MS" as well as environmental causes & complexities. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I highly recommend Terry Wahls, MD book and suggestions for cellular repair.
Thanks to HALEY for bringing this to our attention. ----------
Topic: Doctor with MS recovers: shares nutrients & pivotal diet
Focus: "Minding My Mitochondria" by Terry Wahls, MD
"TED Talks" Video and book links.
MYELIN SHEATH & MITOCHONDRIA SUPPORT discussed.
Antibiotics were also part of her protocol but not mentioned in the book. This is not at all a book about lyme. She was not diagnosed with lyme and never mentions it.
But, she could have been dealing with and it was covered, in a way, with the minocycline - perhaps. Or, perhaps, not.
We just want to be clear that for those with lyme, diet is important but will not cure, alone if lyme or stealth infection is at the core. And the observation that the author also just happened to take antibiotics during her course of action is something to consider.
Still, every bit of importance on food at nutritional support is vital to the mitochondria and myelin sheath. Some very good detail here. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Also a major key: avoid ASPARTAME
There have been some who developed "MS" symptoms from aspartame. Why? How?
Excitotoxins; MSG; Aspartame; & "Natural" Flavors (that are not likely natural at all).
GMO foods that destroy the GI Tract; Gluten; Dairy.
CELIAC, genetic celiac, should also be assessed. It can cause all kinds of neurological havoc, even brain lesions that could be confused with "MS" symptoms. Links in set above.
A lot here to take in, but the key is that you are on your way to feeling better and having a good chance at a good future. You've make the most important step of all so far, now you have a direction. Good luck.
[ 05-12-2015, 05:28 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Trust me when I say I follow a very strict diet; no dairy, no grains, no red meat and for the most part only whole foods. I tend to lean towards the Swank protocol more so than the Walls protocol.
It has been known for many years that MS manifests itself from an underlying condition. It has been largely agreed upon that EBV may be the cause of MS. Then there are those who say it could stem from a bacterial infection.
So needless to say it has led me on quest to investigate into whats going on with myself further than any Doctor is willing to go. Mainly because Neurologists know absolutely nothing about infectious disease and infectious disease specialist know nothing about MS. So i'm trying to connect the dots...
Heres is what i know...
-Wound up in the ER in Aug '14 with stroke like symptoms that quickly subsided over the course of 4 hours -MRI detected 2 white matter lesions on my brain -Positive for oligiclonal banding in my CFS -Elisa came back as a false positive -Canadian Western Blot cam back negative -The infectious disease specialist in my city completely disregards the Igenex testing as i do not meet CDC classifications of having Lyme and considered the test results insignificant -Visual Evoked potential testing came back as slow therefore leading the medical team to believe I have optic neuritis -Elevated Absolute Monocytes (only had one blood test for this in Oct '14) registering a 1.0 and or course my Igenex testing -MS diagnosis
The problem with Lyme in Canada (Im sure its the same way in the US) is that from a medical stand point there seems to be a lot of controversy surrounding the disease. We don't even have an LLMD in Canada. I've tried calling a couple LLMD in the states to see if they'd be willing to look at all my lab tests before i take the costly drive down there...but i'm having no luck and am being told i have to make an appointment in person.
I took the liberty to speak with Dr Harris at Igenex and he suggested I to try some Cumanda and Banderol to see if it will induce a herx reaction. He also suggested i get tested for bartonella henselae (a test that is covered by our health care system)in the mean time.
Thoughts?
Thanks in advance,
Chris
Posts: 17 | From Canada | Registered: May 2015
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Your lab tests are enough for you to make an appointment to see a good lyme doctor in the U.S.
You got a positive ELISA. Some doctor TOLD you it was a false positive. The test was positive.
Then, you got a number of positives or weak positives on lyme bands on the Western Blot.
So, go down the lyme path. You can always go back to the MS diagnosis later if the lyme treatment doesn't pan out.
Lyme disease can be cured. MS cannot. So, pursue lyme as it gives you the possibility of regaining your health.
Lyme doctors don't make a diagnosis based on test results alone. That's why you have to go see them and have a discussion with them. You have to take a very complete list of your symptoms to that appointment. Because, lyme is most often initially diagnosed by symptoms.
Read this quote to learn how you get a lyme diagnosis:
"DIAGNOSTIC HINTS Lyme Borreliosis (LB) is diagnosed clinically, as no currently available test, no matter the source or type, is definitive in ruling in or ruling out infection with these pathogens, or whether these infections are responsible for the patient's symptoms. The entire clinical picture must be taken into account, including a search for concurrent conditions and alternate diagnoses, and other reasons for some of the presenting complaints. Often, much of the diagnostic process in late, disseminated Lyme involves ruling out other illnesses and defining the extent of damage that might require separate evaluation and treatment.
Consideration should be given to tick exposure, rashes (even atypical ones), evolution of typical symptoms in a previously asymptomatic individual, and results of tests for tick-borne pathogens. Another very important factor is response to treatment- presence or absence of Jarisch Herxheimer-like reactions, the classic four-week cycle of waxing and waning of symptoms, and improvement with therapy." (page 7)
So, discuss with a lyme doctor any possible exposure to ticks, your medical history, your symptoms, your test results, and then get a trial course of lyme treatment to see how you respond.
That is how lyme disease is diagnosed even in the year 2015. See the last sentence of the quote:
"Another very important factor is response to treatment- presence or absence of Jarisch Herxheimer-like reactions, the classic four-week cycle of waxing and waning of symptoms, and improvement with therapy."
This is how you will know if it is lyme disease or not. But, the doctor is the key. Go to the very best lyme doctor you can afford. You pay for expertise. A doctor who has treated hundreds or thousands of cases of lyme disease and has cured people of lyme disease is the one you want.
I strongly suggest you read the Burrascano Lyme Treatment Guidelines quoted above to get an education on this disease. See pages 9-10 for a list of common lyme symptoms. This can help you in making your list of symptoms.
I had 2 lesions on my brain when I had lyme disease. I had a positive lyme test. Still, the neurologist I saw insisted that I didn't have lyme disease and would not give me any treatment. He treated me like I was a mental patient and he just wanted me to go away. He YELLED at me that I didn't have lyme in my brain!
This is what we are all facing. Until you get to a lyme specialist, you won't get anywhere.
I would certainly try what Dr. Harris suggested also.
Posts: 9931 | From Maryland | Registered: Dec 2007
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TF, it is critical to seek treatment for MS ASAP once one has been diagnosed as the disease does it's most damage within 1-2 years of onset. So this is the dilemma i'm in.
I recently switched Neurologists to someone who specializes in MS. Immediately she had ordered another MRI (which i will post below.) She concurs with my past Neuro along with the radiologists findings that I have MS. However, the Igenex test results and some atypical symptoms leave me asking questions.
Since Sept '14 ive been having ear pressure (without any audible disturbances, dry nasal passage yet have an abundance of clear thick mucus (as much as one would have when they have a cold)as well as sinus pressure that is situated in the middle of my forehead above the inner eye brows. I've recently seen an ENT, ruled out sinusitis, and diagnosed TMJ. However, TMJ doesn't explain the abundance of mucus. IMG]http://s29.postimg.org/u5eo9g1o7/T2_Flair_Im_7.jpg[/IMG]
Can anyone recommend any one specific LLMD in upstate NY or Michigan?
Posts: 17 | From Canada | Registered: May 2015
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Thanks again everyone! Posts: 17 | From Canada | Registered: May 2015
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
I would go for lyme treatment if I were you. I think somehow lyme treatment either slows or stops MS, or it is lyme impersonating MS. Better to go down this path than deteriorate further into MS. IMO MS is LYME gone wild.
I've also heard Canada doesn't recognize lyme, so only once it has advanced to the stage of MS do they treat it as MS.
Listen to TF, she's been there, done that. Great info from Keebler and everyone else too.
-------------------- --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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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
My friend was diagnosed with MS 6 years ago. The drugs just didn't work well and she declined quickly. She was give 6 months to live last year.
I suggested a Lyme test and she was positive for it (like you).
MS drugs don't work well if it's Lyme induced symptoms. You an always try them and if they don't work, you have your answer.
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