posted
15 months ago I was diagnosed with M.S. This was because I had problems with my vision (colored spots) and brain lesions. At the end of July I went to a LLMD to rule out the possibility of lyme disease. My Igenex results came back positive.
I started oral antibiotics once the test results came back. It was going fine for about a month but a week ago my vision doubled. This was once I started Tindamax as a third antibiotic. I don't use it daily but once I finished my first week the left side of my face had gone numb.
Once I was 2/3rds of the way through my second week the problem with double vision started, My LLMD told me to stop the antibiotics to see if that would help. The double vision has yet to go away and this started about a week ago.
My LLMD told me to see a ophthalmologist to make sure there aren't any other problems with my eyes. I ended up going to the ER this past weekend and they said there are some abnormalities with my brain that are causing the problem and there is nothing they could do.
The ER doc said that she would not argue with my diagnosis of lyme but said maybe I have lyme and M.S. at the same time. The whole reason I went to the lyme doctor was to get another opinion about what had happened to me and standard medical care throws me back where I was.
I spoke to the head doctor at this hospital a few months ago he and said if I told him the name of the doctor I was planning see for lyme, I would have told him too much. He said that I should see an infectious disease doctor for diagnosis and treatment that he provided me names of.
I don't what to think anymore. Any opinions on the subject would be greatly appreciated.
Posts: 7 | From CT | Registered: Jun 2010
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posted
Been there done that, two neuro's, many er visits many specialists none will admit or talk lyme.
Even worse is the frustration in trying to convince them, everything they find, if they actually find anything will be explained away with some idiotic reason.
Someone else will come along to help you with antibiotic advice and it is always important to get specialists to check out these things especially eyes.
My sincere advice stick with the lyme treatment.
The damage to my body continues to grow but with all regular docs ignoring lyme and offering no other solutions.
I am in no way cured, still get blurry vision sometimes but balance is normal, tingling numbness minimal, getting lost-gone, memory improved dramatically
-------------------- 1999 CFS, 2002 CMV Myco pneumonia 1 year antibiotics on and off 2002 EBV, 2009 Positive Igenex Borellia and Babesia, Brain mri severe white matter disease Monoclonal Gammopathy. On and off antibiotics since sept. March 9 started iv antibiotics Posts: 328 | From somewhereelse | Registered: Apr 2009
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posted
Well you accomplished about the first 15 years of my problems in one month!
I had double vision that was diagnosed as stress. It went away in a month. 10 years later a neuro dx MS after seeing MRI lesions and my Evoked Potentials results, and my other complaints.
Then 5 years later I tested Igenex positive and have been treating Lyme for the last 5 years.
Earlier this year I had an attack of diminished vision in one eye. GP and Ophthalmologist were concerned and clueless. Neurological Ophthalmologist dx Optic Neuritis, common in her Lyme and MS patients. She said steroids reduce the length of time you have the disease, but only if taken in the first week. Her Lyme patients won't take the steroids, the MS patients will. She said it would take months to resolve and I am still seeing effects 8 months later. These optic problems are often the result of inflammation in your optic nerves, and that is exacerbated by antibiotics, supplements and even diet.
My opinion - MS is the same as chronic Lyme. Get a good LLMD and get treated. Ignore the MS diagnosis and treatments, and ignore anyone, including doctors, who doesn't understand Lyme. My opinion.
Best of luck in your quest.
Posts: 252 | From NJ USA | Registered: Mar 2004
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
yep, 17yrs w/ MS dxs before finding a llmd.
MS, multiple sclerosis, multiple hardening, multiple scarring,is not a disease but a symptom. Do search here...lots of info.
Look into CCSVI - chronic cerebralspinal venous insufficency. Google it. It's throwing the neuros on their ears since it (MS) is constantly being PROVED that it is NOT AUTOIMMUNE.
Do not waste time, blood or spinal fluid with these doctors.
yep, MS/Lyme lesions could be caused by kinks in veins no emptying toxins effeciently from brain.
Big thing is to STAY away from Hartford County neuros. actually all CT neuros except LLneuros.
They don't believe we've got bugs never mind tick or tick diseases. Any doctor that went to UCONN medical school does NOT believe in more than 2 weeks of abx to cure lyme.
Montel Williams uses this for his "MS". Has a youtube testimony on it.
There is a dr. in Wethersfield who is trained. I can pm you info/details on dr. plus a dr. list of CCSVI in the U.S.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
I only have a moment, so I haven't read all the replies but I too was diagnosed with MS prior to finding out I had Lyme.
(By the way, after treatment for Lyme and co's I am almost completely well!)
LLMD kept an eye on the MS type symptoms and when I asked she said that if they worsened significantly, she would suggest that I be treated for MS along with Lyme (obviously using MS treatments that would not worsen the Lyme - I don't know which options those would have been).
However - except for worsening with obvious herxing - I am doing well now.
For what it's worth, I did have double vision during my treatment - I don't remember if it was while on Tindamax, I think it was during my time on a Mepron combo. (I was pulsing Tindamax throughout treatment.)
In fact, most of my "MS" symptoms worsened at some point in treatment, but I could almost always trace it to a new abx which would have caused herxing.
I'm not a doc - but am wondering if the left side of your face, your vision, etc has been brought about by a herx from the Tindamax. That is a powerful cyst buster and I never made it a full week on it, that early in treatment!
Sorry not to offer an answer, just wanted to give you hope that your symptoms could indeed by something other than MS, and your symptoms can improve with treatment.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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posted
I had brain lesions on MRI 5 weeks after my tick bite with all MS symptoms. Diagnosis: MS which was bull---- was lyme!
Also, a friend of mine, Dave, who was an airline pilot for Delta, lost his flying job for a diagnosis of MS. He was treated for MS and became worse. Went to an LLMD, diagnosis was lyme and started treating...he is back to flying with delta now and enjoying his life.
Posts: 747 | From Utah | Registered: Apr 2010
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IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
I was also dx with MS before finding out I (and my whole family) tested + for Lyme. I only had a couple small lesions but also L'hermittes sign, extremely hyper reflexes, diplopia, nystagmus, spasticity,clonus, myoclonus,Paraesthesia,Ataxia, Intintion tremor,...just a whole lot of the works.
Luckily I sought out an LLMD before doing the whole steroid treatment. My LLMD says he has seen lots of Lyme patients with lesions that disappeared after long term antibiotic treatment. Most of my symptoms have gone away with 2.5 years of antibiotics (mono-therapy mostly) but they got a lot worse when I was herxing. In my opinion, your symptoms are part of the herxing process due to the Tindamax. I thought most LLMDs didn't use Tindamax until well into antibiotic therapy, as a cyst buster?
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
Also, a friend of mine, Dave, who was an airline pilot for Delta, lost his flying job for a diagnosis of MS. He was treated for MS and became worse. Went to an LLMD, diagnosis was lyme and started treating...he is back to flying with delta now and enjoying his life.
That's incredible!
What happened to pauk?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Pauk, have you seen Under Our Skin? It really explains why there is a controversy regarding Lyme treatment. I would highly recommend it.
You CAN have MS and Lyme both, HOWEVER, it's likely the Lyme is causing the MS, which is a disease of unknown origin. So, if you treat the Lyme, you treat the MS.
Your LLMD just wants you to rule out eye trouble. If you do not have eye trouble, then he can deduce it's a herx from starting treatment. It's common for things to get worse before they get better.
Hang in there.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Pauk, I've also got double vision and numbness. Personally I think those specific symptoms are "co-symptoms" which doesn't come from lyme. I think it's either immune related or related to XMRV (virus found in lyme, cfs, ms patients).
The vast majority of other symptoms have improved much with me, but those two have remained the same, or even evolved.
Posts: 275 | From Home | Registered: May 2007
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Well, it's pretty simple. You have Lyme Disease. Lyme Disease opens to the door to a range of other potential infections and autoimmune-like conditions which can mimic, or perhaps directly cause M.S.
The best thing to do is keep treating the Lyme Disease, and run Brain SPECT scans to see if the symptoms subside. The lesions on the brain -- if Lyme induced, will gradually recede based on reports from physicians who have identified these problems in Lyme Disease patients.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
Lyme-induced MS. That's what I tell people I have. The Lyme caused the MS (brain lesions). I am treating with Copaxone, a non-interferon, with the blessing of my LLMD while we try to figure out how to treat my Lyme without causing me to lose my job.
You have Lyme. MS is a label for a set of symptoms they don't know how else to explain, not the name of a disease.
-------------------- dx: MS in 1998 2007 - Lyme suspected 2009 - Positive Lyme, MS worse. Now: Copaxone shots for MS gall bladder out 7/09 Ceftin, Zith, Septra LDN Acyclovir Monolaurin, DHEA, Pregnonelon, Curcumin Posts: 243 | From New Mexico | Registered: Feb 2007
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posted
DeniseNM have you tried Tysabri for the MS symptoms?
My guess is that Tysabri works just as good for people with MS symptoms (who have lyme), and people with MS symptoms who haven't been tested or diagnosed with lyme...
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