Hi! I'm a newbie to this site and was wondering if anyone else has had a similar experience to mine.
9 years ago I was told I have MS, one year later put on Avonex (an IM interferon shot once a week). And I was told I would just feel tired and crabby and crappy, and to make the best of it. I've steadily been getting worse, to the point where I have to nap every day, don't plan things because I don't know how I'll feel, etc.
I now have a wonderful boyfriend, who has had some nasty illness for 8 years, which no one has diagnosed. He found out about Lyme and found a LLMD in Santa Fe, and asked me if I'd be willing to get tested, along with him. I said that one that one of my neuros (in Minn.) actually did test me for Lyme, and it was negative. The boyfriend is a scientist and researches everything, and pointed out that no Lyme tests are very good or accurate. Plus, I have TONS of Lyme symptoms which no one has ever looked at.
So I went to the doc in Santa Fe, was indeterminate on the Western Blot, but the CD57 points to an active Lyme infection. So I've had Lyme for at least 9 years, and probably not MS. I don't know what treatment we'll use, I'll talk to my doc this weekend.
I'm having a hard time wrapping my mind around this. I can't hardly believe that there's a chance I'll get my life back, and feel good 80% of the time instead of crappy 80% of the time. I've probably had this since at least college (North Dakota), maybe high school (Minnesota). It's mind-boggling.
ANyone else have a similar experience? How did you (or did you) decide to quit witht he interferons?
Posted by treepatrol (Member # 4117) on :
Go to towards bottom of Page 3 in NewbieLinksand read Ms connections.
Looks like this
M S LYME AND MS (Kathy Cavert) Lyme Disease Misdiagnosed as Multiple Sclerosis MS in 1954 MS Danette MacDonald I'm not giving up ALSO trigger MS Lyme a hidden danger The saga continued Tom Grier Lyme & MS
Posted by DW213 (Member # 9590) on :
The short story:
Yes, I was diagnosed with MS in May of 2000, but had symptoms starting 3 years earlier.
Of course I was tested for Lyme, and it was negative (more than once). Injected myself with Betaseron (another interferon) for 6 years.
Self-diagnosed myself with Lyme after a herx reaction to antibiotics last summer. Have alwasy lived in a highly endemic area. Found an LLMD and tested positive for Lyme with Igenex.
Although as expected I have felt worse since starting treatment (currently Biaxin and Mepron)it's great to have some hope after years of sliding quality of life with MS.
Posted by Lymetoo (Member # 743) on :
Welcome!! It would really be great for you to get your life back!! I was not dxd with MS, but with Fibromyalgia....25 yrs ago.
Six years ago I found out it was really Lyme. I suffered thru 4+ yrs of treatment, and now I'm doing GREAT!
There is hope!!! You're lucky to have such a smart boyfriend!
Minnesota has TONS of Lyme disease, by the way. But Mayo Clinic which runs almost everything there doesn't "believe in it"... go figure!
You have NOTHING to lose after all this,,,take a good extended round of abx for a 'few' times and see what happens. If you feel ALOT worse or much better,,,then you know for sure!!!remaining--just don--
Posted by Sojourner (Member # 9424) on :
Oh yes, Denise---we have had the same experience in our family. It is a world altering process. Embrace it, and you are lucky to have such an astute boyfriend.
My husband and sister are both MS dx'd, treating lyme and getting better.
Treat the real cause of your MS, get better and tell the world!! We need more of you.
Good luck---
Posted by tory2457 (Member # 10384) on :
Hi Denise,
I too have a MS diagnosis, but after reading and educating myself got a Western Blot. I tested "negative" yet I had positive bands in both IgG and IgM and IND.
Thankfully, I am now treating with Antibiotics, herxing and beginning to feel better...I was injecting Copaxone for years.
Read the newbie links, along with reading here and asking questions. You will find you are not alone...many MSers now treating with abx and feeling better!
Please feel free to pm me; it's always nice to compare notes with someone in the same boat.
Best to you, tory
Posted by Michelle M (Member # 7200) on :
Hi Denise and welcome!
Man, you have one smart boyfriend!
I was originally misdiagnosed with MS too. Neuro would not even CONSIDER lyme. "Rare." Yeah, right. Even though I knew I'd had a bite and rash and had tons of symptoms. My multiple lesions were felt by the radiologist to be consistent with lyme disease or vasculitis. But of course, neurologists know everything!
After a flunked ELISA, he would not give me a western blot.
But I found an LLMD who would, and I was VERY positive for lyme. Also tested positive for babesia.
If I'd believed my neuro and stopped advocating for myself, I would be sitting around probably completely brainless at this point with chronic encephalitis.
It has not been easy, fer sure. But I'm winning!
You will, too!
Michelle
Posted by Monica (Member # 224) on :
I have been diagnosed with Lyme AND MS.
There is no question that I have Lyme disease. I was treated on and off with antibiotics for many years. Finally two years ago I went to an LLMD who put me on heavy antibiotics. I walked into his office with a cane and a year later I was in a wheelchair.
Since being off antibiotics I have stabilized. I am getting physical therapy and I am hopeful I will walk again although the neurologist I saw (who said LYME AND MS) said I never would.
MS means multiple lesions which I have on my brain, but they can also be caused by Lyme.
My physical therapist says I do not present like her typical MS patient. I have more feeling in my legs, etc.
I hope Lyme treatment may be your ticket to good health. So far it hasn't work for me.
The neurologist wants me to consider anti-MS medication, but I am resisting those drugs as many shut down the immune system -- the last thing I want!
Posted by lalalu (Member # 10854) on :
I was diagnosed with MS in 2000. Took Copaxone for a couple years....some power greater than myself told me to STOP. And boy am I glad.
The MS diagnosis looks great for health insurance purposes...especially when I want to get those MRIs and see what the white matter lesions are doing...they look the same for Lyme and MS.
My MS MD does not know too much about Lyme and does not believe that Lyme could do this kind of damage. That is okay. My LLMD and I know otherwise.
I was diagnosed with Lyme in 2005. My symptoms go back 20 years, easily.
One woman I know says she has "Lyme induced MS". Yes, it is MS but the Lyme is behind it all. Remember, MS is just a catch-all of various symptoms.
Posted by dmc (Member # 5102) on :
yep, got lyme induced ms although most of the so MS stuff is gone mostly ortho stuff now. just like lalalu wrote, MS Multiple sclerosis, means multiple hardening, multiple lesions.
got lesions, got MS. Lyme CAUSED the MS immune response in me. Treat the cause stop the progression.
lots of info tying Chronic Lyme to MS.
Med Hypotheses. 2005;64(3):438-48. Related Articles, Links
Chronic Lyme borreliosis at the root of multiple sclerosis--is a cure with antibiotics attainable?
Fritzsche M.
Clinic for Internal and Geographical Medicine, Soodstrasse 13, 8134 Adliswil, Switzerland. [email protected]
Apart from its devastating impact on individuals and their families, multiple sclerosis (MS) creates a huge economic burden for society by mainly afflicting young adults in their most productive years.
Although effective strategies for symptom management and disease modifying therapies have evolved, there exists no curative treatment yet.
Worldwide, MS prevalence parallels the distribution of the Lyme disease pathogen Borrelia (B.) burgdorferi, and in America and Europe, the birth excesses of those individuals who later in life develop MS exactly mirror the seasonal distributions of Borrelia transmitting Ixodes ticks.
In addition to known acute infections, no other disease exhibits equally marked epidemiological clusters by season and locality, nurturing the hope that prevention might ultimately be attainable.
As minocycline, tinidazole and hydroxychloroquine are reportedly capable of destroying both the spirochaetal and cystic L-form of B. burgdorferi found in MS brains, there emerges also new hope for those already afflicted.
The immunomodulating anti-inflammatory potential of minocycline and hydroxychloroquine may furthermore reduce the Jarisch Herxheimer reaction triggered by decaying Borrelia at treatment initiation.
Even in those cases unrelated to B. burgdorferi, minocycline is known for its beneficial effect on several factors considered to be detrimental in MS.
Patients receiving a combination of these pharmaceuticals are thus expected to be cured or to have a longer period of remission compared to untreated controls.
Although the goal of this rational, cost-effective and potentially curative treatment seems simple enough, the importance of a scientifically sound approach cannot be overemphasised.
A randomised, prospective, double blinded trial is necessary in patients from B. burgdorferi endemic areas with established MS and/or Borrelia L-forms in their cerebrospinal fluid, and to yield reasonable significance within due time, the groups must be large enough and preferably taken together in a multi-centre study.
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