I am wondering how many others have been treated ot told ms when really had Lyme? I want to seee if I am a rare case or if this is happening to others? I was told in 1992 I had lyme at one time and told ms finally after years of tests for lyme and all coming out negative I went to lyme doc and was treated for lyme. I have improved tremondusly still have set backs though but nowhere where i was when treated for ms. I am off all ms meds over 8 years now and been off antibiotics now for 3 years . I have started school to be a medical assistant. Any others who were told ms and found out lyme love to here your story. Thannks Tammy
Posted by MariaA (Member # 9128) on :
this is really, really common, actually.
Posted by MariaA (Member # 9128) on :
Congratulations on your recovery!
I hope your school goes well and you're able to help others.
It might be nice if you could write to this young man and give him some words of encouragement from your experience- he's been fighting MS for years and only recently figured out that it's Lyme. He's been having a hard time with Lyme treatment. I'm sure he'd appreciate hearing that others in his position have gotten better:
MS is late stage lyme.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by massman: MS is late stage lyme. [/QB]
I would believe that!!
What did you mean by this?? "I have improved tremondusly still have set backs though but nowhere where i was when treated for ms."
You felt better on MS treatment????
Posted by maps (Member # 19758) on :
Two good neurologists have looked at my MRI.
The first one already knew I was being treated for lyme looked at the results raised his eyebrows and said not MS lyme?
The second one says no MS unknown reason for lesions, he has seen many like it and has no idea what is causing it LYME
So happy you have achieved wellness, it gives me hope.
Posted by massman (Member # 18116) on :
IME most MDs brains are frozen at graduation and locked up.
This has been my experience. In the late 1990s before I was aware of lyme I diagnosed 2 cases of MS. Local neurologists would not agree with that as a lowly Doctor of Chiropractic made that diagnosis.
Ohio State college + Mayo Clinic confirmed the MS. Other stages of lyme, as I have studied it, are ALS, FM, CFS, RA etc.
Posted by cactus (Member # 7347) on :
You're not alone.
I was diagnosed with MS by a good neurologist. I had multiple work ups by many, many specialists and this was the best they could come up with.
Went to a famous MS neuro for a second opinion - he felt that my story was not completely typical of MS, but still called it "probable" MS.
Thankfully - I found a LLMD.
I tested pos for Lyme, erlichiosis, babs microti and duncani, CO Tick Fever (a virus that can go chronic), chronic salmonella, chronic Legionella, and a host of viruses.
Dramatic improvement in the last 5 years tells me that my troubles were infectious.
I think that's most often the case.
Posted by Keebler (Member # 12673) on :
- Yep. Many here were first told they had "MS" or that "MS" was highly likely. Lot of past discussions about "MS"
actually, the forum software doesn't do searches accurately for words with just two or three letters- you should spell out the disease name.
Posted by NeuroEcclectic (Member # 17783) on :
yes, multiple hyperintense foci entire brain/c/t-spine. 30 years old, dx @ 27, 2 LLMDs believe that I contracted it somewhere from 10 to 21.
Posted by dsiebenh (Member # 5353) on :
I had weird seemingly unrelated sx throughout the 1990s, dx with MS in 1999 but dx with Lyme in 2004.
MRI shows lesions... 1999 MRI reading said "MS or other demylenating disease" 2008 MRI reading said "MS or Lyme".
I'm no better off now than 1999, in fact I'm a lot worse. IMO it's all Lyme Disease.
Posted by dmc (Member # 5102) on :
sending you PM with my story...17yrs "MS" found a LLMD from a womwan in southington who also told MS found out Lyme
Oh yeah. Tammy it's you!!! who saved me...disregard the PM it's just old news to ya. Posted by Lymetoo (Member # 743) on :
That's cool, dmc!
Posted by lymebytes (Member # 11830) on :
Lots of links on MS/LD at this link - scroll down for stories:
Are some of you suggesting that MS is always lyme. If not how are the symptoms different? Do MS patients also have brain fog and a low body temp, for instance?
Posted by Marcie (Member # 10070) on :
When I first got sick I had an mri done and had multiple brain lesions...was told possible ms...positive w.b. for lyme and improved on abx, but not out of the woods yet.
Glad to hear you are better!!
Posted by DeniseNM (Member # 11182) on :
Yes, I was told in '98, "probable MS" and had numerous neuros agree, although one did run some wimpy Lyme test on me. Turns out it was Lyme, now I'm chronic neuro.
Having a hard time treating, everything makes me sick, and I have no choice but to work full time. My bosses will "work with me" but if I don't do my job correctly, I get the feeling I'm out the door. It's pretty scary.
Some people believe LYme and MS are the same thing. I believe Lyme can (and did in my case) cause MS. I also believe that if Lyme can cause MS (which just means you have lesions in you CNS), then other infectious agents can cause it, too.
Makes me crazy that the MS society doesn't look at infectious agents for MS.
I take Copaxone for the MS. I believe that whatever is causing the demylination, I need to slow it down while I try to deal with the infection causing it.
Posted by aliyalex (Member # 6976) on :
i wonder how the vascular issue fits in here. ccsvi is huge breakthrough for ms presentations. high correlation between ms and venous abnormalities. i believe infections and HMs cause abnormalities. they want that think it is congenital. (or maybe a coke bottle fell out of the sky...)
i'm treating lyme and ccsvi (angioplasty thru jugulars that are abnormal or azygous.) there is a segment of msers who use abx. it is a minority.
i never accepted ms drugs. and i'm struggling with lyme tx. i started KPU, antimicrobials, etc. 4 mos ago.
what a journey.
Posted by Littlesprout (Member # 7406) on :
I am also looking into the CCSVI/MS connection. I had a abnormal MRV, getting a colored doppler. So anyone who has MS/Lyme neuro problems. I highly recommend looking into this. We can't blame everything on Lyme. I am finding out, I am staying away from the neuros.
They are being very closed minded over the CCSVI. This MS "cure" will really affect some pocketbooks. I went to my old MD/DO for testing orders.
Now looking for IR to treat.
Posted by Keebler (Member # 12673) on :
- Many chronic stealth infections such as lyme and Cpn can cause vascular problems of major proportions.
Also see www.cpnhelp.org -
Posted by ott70 (Member # 18237) on :
So if I know someone who has been diagnosed with MS and states her Lyme test was negative -- and we all know how accurate those tests are -- should I be persistent with her in looking into Lyme further?
Colorado has one of the highest percentage of MS cases, if not the highest. Local doctors calim Lyme doesn't happen in our state. Perhaps the high amount of MS cases would suggest Lyme is a little more prevalent in Colorado than suspected?
Posted by lymebytes (Member # 11830) on :
I know quite a few LD patients that were first diagnosed with MS.
ott70 - YES - pursue Lyme. It's no coincidence how the geographical distribution of Lyme and MS are identical.
The more I read, the more I agree with Massman that MS is late-stage Lyme.
your local docs are not LLMDs if they say Lyme doesn't happen in CO - it occurs everywhere. The ticks don't know how to read road signs and won't stop at a state border, just because some duck says so!
I know of a good LLMD in CO, PM me if you want his name. I don't know if he's taking new patients, but he would have recommendations.
Posted by littlebit27 (Member # 24477) on :
Yes I know someone who's best friend has "MS" but it sounds so much like Lyme. Both her mom and sister have died from "MS" and the only reason they DXed MS was because of the brain lesions...on and that negative Lyme test. I tried to tell her she needs to tell her friend to be tested by a real Lyme doctor but she said she is sure it's MS and won't tell her. I don't know the other girl personally so I can't contact her.
Some people just think all doctors are God and know everything. I've learned and even before this experience that doctors are only human and only know so much. My daughter was DX with a head cold. I kept pushing the doctor that it was more but she stood by the cold. 3 days later she was admitted to the hospital with RSV and was on albutertol treatments every 4 hours around the clock. I'm not a fan of doctors and I question everything. I trust a nurse over a doctor and a pharmacist over anyone else.
Posted by Dekrator48 (Member # 18239) on :
Scroll to pages 48-50 of this presentation for comparison of MS vs Lyme....
MS is actually a Mold problem, believes Dr. K. Lyme is always a part of it as well...but the overabundance of mold causes the neuro issues with MS! It can be addressed.
Mold that lives in the sinuses...slowly poisoning the brain with mycotoxins. Biofilms develope!
Can actually be caused from wall moisture in home, water damage, visable mold...or many other ways mold infects the brain.
Many good treatments in Dr K"s protocols. Google and search...he gave all the protocols in his recent lecture. He has experience with MS patients that reversed their symptoms...
Another way to diagnose this...look at panoramic xrays to see if sinus looks seperated from the root of the upper teeth...this can be seen on the xray to know if mold is an issue.
[ 05-06-2010, 08:47 PM: Message edited by: lightparfait ]
Posted by lightparfait (Member # 22022) on :
For those interested in Dr. K"s suggestions:
Says: Sanum/Enderlin remedies are great mold remedies Labcorp has the mold test...take this.
Best treatment: clean out your mouth cavatations...and the sinus area.
Also check your tonsils...may need a tonsilectomy...to remove if tonisls are dead..dead tissue does not recover. Harbors bad bugs...and leads to a bad blood supply in veins /arteries leading to brain. Seen in many ALS/MS patients.
Medical drugs used to treat: (antifungal parade) nystatin amphotericin B fluconazole intraconazole Voriconazole
always add binders when using those drugs...chlorella, cholestrymine, microsilica
Biological options: Rizole Gama Rozole Alpha Rizole Zeta MMS (miricla mineral Freeze dried Garlic - most effective (capsule in water) Quintessence ozone therapy hyperbaric oxygen chamber
Toomany antioxidents are bad...because they protect lyme and the pathogens...these microbes use the antioxidents and become immortal. Then immne system cannot kickthem out. MMS will antidote this problem...
MMS is a low budget solution to helping sinus mold issues!
[ 05-07-2010, 08:43 AM: Message edited by: lightparfait ]
Posted by Tracy9 (Member # 7521) on :
Dr. Steven Phillips has a DVD you can purchase on MS and Lyme Connection....I think you buy it from Dr. Eva Sapi at University of New Haven.
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