This Is MS Multiple Sclerosis Knowledge & Support Community

Hi-

This is my first post although I have been stalking the site since I was diagnosed in September 2012! (I am shy I guess or just overwhelmed) I am 44 and have had a history of migraines and dizziness since @ 30. Long story short:

I went to Johns Hopkins ER upon waking up with right sided tingling and numbness was admitted and diagnosed.
Put on 5 day steroid treatment.
Started Copaxone in October..
Another relapse in December (Merry xmas to me!)
MRI in Jan showed enhancing lesion
put on steroids for 3 days - felt like crap for a month
Told to stop Copaxone
Told to start Tysabri
Decided against it and changed diet (gluten free, dairy free and sugar cane free) sometimes cheat but not on dairy free.
MRI in June showed another enhancing lesion
Felt OK so did nothing but stick with diet and supplements
Two 2nd opinions told me to take DMD (Tysabri or Rebif)
Decided against both - just can't do it

September 2013 - 1 year since diagnosis.
Feel OK but still have residual right knee something (not sure what to call it - band like sensation - no pain) from Sept 2012 relapse.
Other symptoms are swallowing issues (residual from Jan relapse) and breathlessness and feeling like I don't want to talk because of effort to explain and feeling like inflection is off.
No pain, some leg weakness but no other major symptoms (besides the speech related stuff). Maybe related - also have noted some heart palpitations or something.

Also have crazy allergies that were helped with changing diet but still can not take some supplements like NAC (experience some breathing issues like stopping breathing and then gasp) also can't take ALA (hives).

WHY I AM CONFUSED:
Decided to basically ignore neuro and do a multi-pronged attack to find cause and, if that fails, then just accept fate without going on DMDs.
Went to LLMD on suggestion of my primary who noticed an old lab test that had one positive band. ( although I did have mono aka EBV at 16)
LLMD started me on antibiotic therapy (only in 1st week).

So my question: Do my symptoms seem like Lyme or MS? I think when I was stalking the site that someone said allergy to NAC is indicative of CPn.

Basically I don't know if I am deluding myself in hoping that if I get treated for lyme infection it would halt progression? If it is lyme?
My CD57 test was 29.
Lyme tests negative.
Also really interesting LLMD tested me and I am heterozygous for MTFHR mutation - meaning I don't process Folate well.

Not sure what to do? I guess my first post was not as short intro as I thought!
Thanks-
Maureen

Lyme tests negative by what standards? My adult son was "diagnosed" with MS after only one attack even though 2 bands were present for Lyme in initial bloodwork (though negative for Lyme as far as CDC is concerned when testing using Western blot). However, 8 months later he had his blood tested by Igenex (reputed to be the place to go), and results indicated very positive for Lyme. He also is being treated with antibiotics. From my research, symptoms for Lyme and MS (whatever MS is) are virtually indistinguishable. I've said it before, perhaps the set of pathologies engendered by infections with Borrelia burgdorferi (Lyme), EBV (mono), Cpn, clostridium perfringens, and others is MS.

Lyme disease is hard to diagnose. Some people use essential oils or colloidal silver to treat Lyme disease. If you have mercury fillings or root canals might try a mercury free dentist to see if that might be the problem. Might want to see an functional medicine physician and see if he can find the problem.



http://www.tracesetc.com/Library/Handouts/Lyme.pdf

http://www.pannaturopathic.com/lyme-silver.html

http://orbisvitae.com/ubbthreads/ubbthr ... mlQT4wo7IU

Thank you for your responses. I was positive for IgM band 23 last year. My spinal tap was negative for lyme but positive for the O bands. I had another lyme test recently and it was negative. Despite that I started treatment because of the indirect tests that were indicative of lyme c4a and cd57 . My LLMD thought my symptoms were more than MS ( and I do too).

Although it seems like any symptom is explained as MS, my symptoms are much worse around menstruation which is explainable by Lyme but not necessarily MS. Also, i have heart (fluttering) and some other one off things that are more like lyme but could be MS. My main MS symptoms that got me diagnosed were migraine/dizziness episodes for last 14 years. Only got numbness and tingling last year and some swallowing issues (after I tried copaxone for 2 months and had an immediate relapse).

Basically my feeling is that MS is just a collection of symptoms and is not really a disease. I am determined to find my cause because this really sucks. I am sick of feeling 'off' but looking fine so everyone still expects the same from me.

I guess as I am writing this I realize I am willing to take a risk and be my own guinea pig to find my own cure rather than take MS meds. I don't know maybe that is crazy!?

You are smart. No one has a bigger interest in your health than you. Think the doctors can help you with MS is stupid. It is all about the money with these jokers. They are just a bunch of legalized drug dealers sanctioned by the FDA and AMA. Here is a video showing how much they are concerned with your health. If you want to get better you have to figure it out for yourself.

Ive seen the comment on removing mercury amalgams and root canals, but have only seen comments on people removing fillings. I have two root canals (with gold posts, and porcelain crowns), that Ive had for ten years. They are in the front teeth so if I opted for removing them Zirconium implants would be the way to go (VERY expensive).

I also have a slightly "bent" nose, which means that airflow into my right nostril when breathing in is very reduced. sounds silly, but I cant help but think that it has something to do with all of this.

Although relatively few lesions and not too big in size, most are on my right side of the brain. I wonder if it is coincidence that problems breathing through my right nostril, and that one of my crowns is on the upper right incisor?

Really is a pity there aren't more stats on this info collected for MS patients.

Mocamo wrote:Thank you for your responses. I was positive for IgM band 23 last year. My spinal tap was negative for lyme but positive for the O bands. I had another lyme test recently and it was negative. Despite that I started treatment because of the indirect tests that were indicative of lyme c4a and cd57 . My LLMD thought my symptoms were more than MS ( and I do too).

Although it seems like any symptom is explained as MS, my symptoms are much worse around menstruation which is explainable by Lyme but not necessarily MS. Also, i have heart (fluttering) and some other one off things that are more like lyme but could be MS. My main MS symptoms that got me diagnosed were migraine/dizziness episodes for last 14 years. Only got numbness and tingling last year and some swallowing issues (after I tried copaxone for 2 months and had an immediate relapse).

Basically my feeling is that MS is just a collection of symptoms and is not really a disease. I am determined to find my cause because this really sucks. I am sick of feeling 'off' but looking fine so everyone still expects the same from me.

I guess as I am writing this I realize I am willing to take a risk and be my own guinea pig to find my own cure rather than take MS meds. I don't know maybe that is crazy!?

Hello Mocamo:

Consider that the dizziness/migraines are due to FLUID CONGESTION IN THE HEAD which for me can be easily treated with a simple upper back massage. If you have menstrual cramps, they stress the body enough to cause a blood reflux into the central nervous system. If I had known this 33 years ago my life would have been entirely different.

Excerpts from a recent blog entry:

"As far as the MS problem, I was doing just fine until recently Every morning the Tens Acupressure treatment appears to open the fluid flow (blood, cerebrospinal fluid) through the brain which lifts me immediately from a waking "depression". If I'm stressed during the day and begin to feel dizzy (which for me means the "fluids" are freezing up) and my coordination falters (because the blood must be backing up into the CNS), an upper back massage will relieve me. And if I can swim, the relief is nearly "miraculous". Not only does my head tension clear up, my urinary tract empties, it's Niagra Falls. (After 32 meters of doing the crawl I have to get out of the pool and head to the ladies room. Quite annoying. An excellent illustration of the best way to treat "hydronephrosis" – “reflux of urine from the bladder back into the kidney” Wikipedia.)

...

MS patients have the cystitis problem because they have difficulty emptying their bladder. Hydronephrosis can lead to stagnation of urine flow, hence infection. It’s assumed it’s primarily because the nervous system doesn’t work as it should. I don’t think that is true in my case. As I’ve written previously in the Blog post on “ Rigidity Disease”, the bladder “freezes”, stress cramps it up so that it doesn’t easily empty. My recent problems illustrate this perfectly well . It is said that hydronephrosis is caused by MS. Maybe hydronephrosis IS Multiple Sclerosis, that is to say,the type of MS caused by body tension which actually prevents free flow of body fluids, blood, cerebrospinal fluid, urine. What stresses the body? Inflammation, infection, toxicity, allergy, illness, emotional anguish, female health problems.
...

I had suffered this for years until I was treated for MS by the kinesiologist/nutritionist and then the Endometriosis disappeared along with the MS after a year of de-toxification, supplements and optimal nutrition. (My Gynecologist at the time didn’t believe this was possible.)...

I believe the pain and inflammation I’ve experienced these past months exacerbated the MS because my entire body tenses up."

MS Cure Enigmas.net

Thanks Vesta-

I do try and see my chiropractor every 6 weeks and also get a massage afterwards. I have noticed that I feel pretty good for about a day and then go back to my new-not-so-normal state. I have also noticed what I think is very slight edema in my calves so I do think there is some vascular element. Also right before my period I feel lightheaded and have some chest pressure (don't know how else to explain it). I always think a relapse in pending but then goes away once I get my period.

All that to say I think I will invest in a weekly massage at work and see if that might help me feel better for longer. I can't afford accupuncture right now but will consider it later. Sometimes I wish all these millions of dollars in research would just get divided up among the actual patients so we could help ourselves (then collect the data)!. Maybe if I win the lottery I will create and institute!

I like that you said that stops an impending attack. Since I was diagnosed I live in fear of what to do if I know of a stressful event (family illness, infection) that will severely impact my emotional or physical state. Now at least I have some confirmation that massage will help.

Hi Mocamo;
Greetings. I'm glad massage helps. I'm convinced body tension itself causes the blood "reflux" into the central nervous system which triggers inflammation "attacks". I also believe that progression develops as the attacks weaken, atrophy the musculature eventually undermining the body structure which damages the spine. (See my recent post here "How CCSVI leads to SPMS"). That means every effort must be made to prevent attacks. If you refer back to my site MS Cure enigmas.net and look up the TENS acupressure blog, you will find my self treatment which I use every day to keep the blood flowing (and to nip an attack in the bud). The TENS aparatus doesn't cost more than $100 (maybe less) and you can treat yourself every day. The "symptoms" you mention related to your period imply hormone induced body tension and again you can help yourself with a simple TENS treatment. Also a brief (30 seconds even) massage of the upper back and down parallel the spine can help if you can persuade a friend/Partner to do it. I agree, in my opinion money is wasted on drug "research" which could pay for hands on "functional" thérapies of real benefit to MSers.