I basically just want to talk to someone who has been diagnosed with MS and then Lyme...? Anyone???
I was first diagnosed with MS. Put on Rebif and became quite ill 15 months later. Have been doing Lyme treatment for two years now. Just high dose orals.
At a standstill with the orals, about to start IV Doxy.
Wondering if their is anyone out there that was first diagnosed with MS and then Lyme and is now better?
Thank you everyone for replying!
Take care,
Kuda
Posts: 158 | From canada | Registered: Jan 2010
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posted
I was not diagnosed with MS but I was very close to misdiagnosis of MS.
I think in my case was pure luck that I was not in a huge group of people who were misdiagnosed with everything else but Lyme.
The story is very long but here is short version.
I had many MS symptoms -fatigue, brain fog, brain goes blank, short term memory loss, problem finding words. I got Hepatitis B vaccine and symptoms worsen within month- lost bladder control, sinking feeling in my legs, blurred vision and then one day after several months of developing new "MS" symptoms I crushed under huge "attack" to the point I was not able to walk.
My GP was smart to test me for Lyme disease. She dismissed my self-diagnosis of MS and guess what Lyme test came back positive-6 years ago same GP tested me for Lyme that came back negative.
In past two years I have gone through very aggressive abx treatment and let me tell you if "regular" nurologist was following my case I would be diagnosed with ALS,Parkinsons, MS name it.
During this past 2 years I have had so many doubts,on daily basis, that it is not Lyme disease, but happily I can report that as of last week my neurologist who is not LLMD but is very good MS specialist with interest in infectious diseases confirmed (after a year of waiting for dx) that I suffer from Lyme encephalopathy.
My MRI (have one lesion) have not changed despite horrid neuro symptoms and recent "attack" much stronger than Lyme flare, followed by worsening of symptoms.
IV Doxy helped a lot, but Rifampin IV was a game changer.
I have gone reverse route in Lyme treatment. I started with IV abx because of severity of symptoms and now I am on oral abx and bunch of supplements, no more IV.
My hope is that orals are going to keep my Lyme and company in check.
Posts: 191 | From va | Registered: Sep 2008
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
Not sure if you've tried it yet but LDN sounds quite promising for lyme disease presenting as MS.
LDN-Low Dose Naltrexone uses a long approved drug that was originally intended to help heroin and opium addicts kick the habit.
In very low doses, the drug Naltrexone is said to have immunomodulating properties, and the Internet MS forums are peppered with patients who claim that LDN has helped relieve their symptoms and halt the progression of their disease.
Naltrexone blocks the opiate receptors in the brain, and is therefore useful in treating people addicted to heroin and other opium-based narcotics. The drug is typically used in doses of 50 mg for the treatment of addiction.
When used in much smaller dosages, 3 mg to 4.5 mg, many MS patients report sometimes dramatic benefits from the drug. Patients suffering from other autoimmune diseases, such as Crohn's disease and Lupus also report symptom improvement and disease remission resulting from the use of LDN.
posted
I was dx with MS in 1999 after 10 years of various sx, but it was not till 2006 that I was correctly dx with Lyme. I have a positive MRI, I injected Avonex for 3 years, and took a year of weekly gamma globulin infusions when an MS patient.
I have a whole sordid story I'd be glad to relate to you, including thyroid cancer, but the bottom line is that no, I am not better. Overall I am a lot worse. My "progress" is marked by my ability to tolerate more antibiotics.
Feel free to ask any questions here or via pm.
Posts: 252 | From NJ USA | Registered: Mar 2004
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posted
I think when you have brain leson you reeeaaaly have to suppllement a lot with collagen, the lesions come from brain shrinkage, so help your brain stay coherent...
Posts: 723 | From Montreal | Registered: Oct 2010
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