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  • Lyme MS?

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    Old 04-26-2016, 07:57 PM   #1
    thefunnyfarm
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    Lyme MS?

    Hi everyone , new here I'm Kim This is going to be a long story and for that I apologize but I'm hoping for input. I turned 50 on December 18 2015 . I was tested and confirmed for Lyme about 3-4 years ago no bullseye rash nothing that I could see . I had fly like symptoms for well over a month , went to dr , meds didn't help . After a best friend of mine who is also a vet tech for over 20 years and has Lyme herself suggested I insist on a Lyme test . It was positive . 30 days of doxy and I was back to normal . So I thought . From then til October of 2015 I had severe depression, anxiety and tired all the time . Muscle aches and pain in my wrists diagnosed as tendinitis. Got cortisone shots numerous times . And they made me sick . Then yada yada .... Years go by .... The middle of sept 2015 I started pins and needles , tingling on my left side . Very annoying . Then the right side of my whole body went numb . Cat scans and bloodwork ... By the beginning of October 2015 I had blurry and dbl vision nuerologist scheduled me for a EMG I think ???? Where they stick you with a bunch of needles and test whatever it is ... My brain is not working like it should so again I apologize . Then I couldn't eat my jaw stuck and I was throwing up , couldn't stay awake . AGAIN insisted on a Lyme test when I was in ER and admitted . Yep I had Lyme again ! Or still ??? But I had an infectious diseases dr in the hospital and was started with an antibiotic IV . Was in the hospital 7 days . Left there with a pic line to Mage up 30 days total on the antibiotic . I came home with an eye patch a walker and in that time with the pic line I felt better everyday ! All the symptoms were gone ! I could walk talk no tingling no numbness !!!! Ok gotta skip back to the stay in the hospital ... I had 2 MRIs . Swelling on the left side of my brain and lesions on both sides and brain stem . ... They said Lyme or MS they had to do a spinal tap to make sure . Ok back to the antibiotics making me better .... After the pic line was removed. And finally heard from the nuerologist about that spinal tap that I have to say I had NO feeling totally numb and don't feel a thing . They tell me your cured of Lyme after the 30 days IV and the spinal tap confirms its MS . All symptoms start coming back . They have me do 3 days of IV steriods 2 hours a day .... Did nothing for what had started back . The pins and needles tingling on the left side . Then they had me on copaxone injections . I had terrible allergic reactions to it ! Fever chills vomiting and fainted . Try it again that can happen but odds are you'll be ok .... Nope happened again ! Now they are starting me on Abagio oral meds . I am now starting numbness on my right side again . Face , neck , ear , back side of right arm , right breast , and right side ( rib cage) they will not retest me for Lyme . I am SO scared ! I am afraid they are going to kill me with MS meds while I need antibiotics for Lyme ???? I can not afford a Lyme dr they don't take insurance . I lost my business I owned , in debt up to my ears

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    tess201 (04-27-2016)
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    Old 04-27-2016, 07:56 AM   #2
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    Re: Lyme MS?

    So sorry to hear this. You understand that you need to see an LLMD. Somehow this has to happen - beg? borrow? This is imperative because no other doc can help you with this and you are wasting precious time going to these practitioners while becoming more ill.

    I also lost my job but was able to get SSDI disability, but that was years ago. You might see if you would qualify for some type of assistance. Maybe family members could assist? You might have them look at the DVD Under Our Skin to make your case. Surely they would want you to be well again.

    Sending all hope and best wishes for you to get the help you need soon.

    Tess

    Last edited by tess201; 04-27-2016 at 07:58 AM.

     
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    Old 04-27-2016, 01:55 PM   #3
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    Re: Lyme MS?

    Thank you Tess for replying . I contacted a Lyme dr and they are way more than I can afford 😥 My family helps me out with paying my bills at the house , I don't have a family that's well off . I am going to apply for disability 🙏 Just exhausted of begging Drs and they don't care. Why is it they don't want to accept Lyme exists ? And these meds they have for ms are scary , esp since I got so sick from the shots I started then stopped. And not treating the Lyme even if I have ms 😥 ~Kim

     
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    Old 04-27-2016, 02:15 PM   #4
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    Re: Lyme MS?

    Funnyfarm, as a person who has had MS I have to tell you that it is impossible to diagnose MS from a spinal tap. What they look for in a spinal tap is Obands...and if they are present, they indicate an AutoImmune disease, but not WHICH ONE. Also, just so you know, 15% of MSers have negative spinal taps and still get the diagnosis due to the lesions on the brain and the symptoms which present.

    I dont like what I am hearing, but I am not a MS Specialist...and it doesnt sound like you saw one either.

    MS and Lymes are often mis diagnosed because there are more false negatives in Lymes and not enough knowledge about MS.

    Please visit a MS specialist. Stop by the MS board here at healthboards. You can get allot of great feedback. If you dont know how to find a MS doctor, the MS board has a sticky on top of it which can help you.

    Best to you....but I wouldnt jump to any conclusions right now. You need further evaluation before it can be concluisve.

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    Old 04-27-2016, 05:35 PM   #5
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    Re: Lyme MS?

    Hi MSNik my name is Kim , thank you for replying . Yes I have been diagnosed the ms from the spinal from my MS specialist any info you can give me is appreciated . I am so upset I start the Abagio tomm and I'm so afraid after I got so sick from copaxone injections i have all my hospital records I can log into on line and I don't understand any of it . But the ms specialist ( nuerologist specializing in ms there are 3 of them in the office where I go ) they claim they know it's MS and I'm cleared of Lyme due to the spinal tap ??? Don't get it . I think we should try for a second opinion with Drs in Hershey ? That's what my family dr suggested . But I'm in such a depressed funk and fatigue I don't care right now to even try ~Kim

     
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    Old 04-28-2016, 02:49 AM   #6
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    Re: Lyme MS?

    Hi Kim,

    Yes, it is best to determine exactly what you are dealing with, either Lyme or MS. I just wanted you to know that a great many of us with lyme were first diagnosed with MS. Neurological lyme can also produce lesions on the brain. An LLMD would help you to sort this out but I certainly understand how finances hold many people from getting the care they need. If it is lyme, a lyme savvy Naturopath is also a possibility but many of them do not take insurance either. My last suggestion is alternative, such as herbals or salt/C, which is what I did. Many people choose this inexpensive path and you don't need a doctor. I hope you find some lane of healing that works for you.

    Tess

     
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    Old 04-28-2016, 05:55 AM   #7
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    Re: Lyme MS?

    Kim, you and I live in the same neck of the woods. Have you considered going to U of Penn for an opinion? They have a great MS program and a Lyme program as well. Hershey is a small community hospital, and although I am sure you would be fine there- U of Penn has a worldwide reputation.

    Lyme can be ruled out by a spinal tap. MS can not be diagnosed by one. If the spinal tap is not showing the indicators for LYme, then you do not have lyme.

    If your MRIs are showing the indicators for MS, you very well might have MS, and maybe you are confused...maybe they gave you the MS dx because you definately do not have LYme....not becuase the LP showed anything to do with MS. With MS, there is no test at all....it is based on ruling everything else out. You can take a look at the Revised McDonald Criteria for more info on MS.

    Aubagio was my favorite of all the drugs I have been on. Loved it!
    If your MS doctors are sure this is MS, then you are going to have to go with that idea...but if you have any hesitancy, and you want to get another opinion, that is your right.
    Remember, MS drugs do not cure the disease and do not help the symptoms you are having, they arent designed for that. They are designed to prevent further lesions (attacks) which might cause additional progression or symtoms ...MS drugs are supposed to slow down progression.

    Best to you. Your in my thoughts.
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    Old 04-28-2016, 07:21 AM   #8
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    Re: Lyme MS?

    A spinal tap is not a diagnostic tool for lyme disease. In fact, it is highly discouraged.

    Tess

     
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    Old 04-28-2016, 09:16 AM   #9
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    Re: Lyme MS?

    Hi Thefunnyfarm, oh how many have/are there, in trying to figure things out. So sorry your going through this!

    As Tess mentioned, MANY of us are told we have M.S. Many of us are diagnosed with many disorders Because testing is NOT accurate when it comes to Borrelia (Lyme) and Co infections. There are too many strains. And the bacteria loves to hide outside of the blood stream. and it morphs into different shapes and creates cyst and biofilms around itself as a protection.

    It took tons of doctors and each one told me I had something different. From M.S. to Cancer to mental disorders ect.

    I found ONE doctor outside the closed minded western med field. That only treat symptoms and NOT what we truly have. He started me right off on antibiotics. I was dying. Under 100 pounds, eyes going, throwing up, mentally off....you name it I was doing it. I was on so many drugs these other doctors put me on. Such a nightmare.

    I begged this out of the box thinker to PLEASE give me a spinal tap. Test for Lyme was not showing a positive. He said he didn't want to cause it would do more harm than good beings he suspected Lyme and co infections. After another year or so of treatment and negative test...he finally gave in. This was around 15 years ago. He was right ...It threw me down for 2 months worse than what I was. And it DID NOT show a positive. It is less than a handful of people that will get a positive. (if they are lucky)

    When I finally showed a positive was after 13 years of antibiotics, and other treatment protocols. It finally through Igenex lab and Pharmasan Lab showed a positive. But not through CDC. But through both of those labs standards.

    As Tess said, there are other types of treatments out there. I am currently doing Api Therapy (Live Bee Stinging) for Lyme, viruses, parasites and other bacteria's. Finally getting some relief.

    I would not jump back into the world that you have M.S. You had a positive and were given a extremely short course of antibiotics. This only makes the bacteria angry and dig in deeper. And replicate more. Steroids drop the immune system and so not good for those of us with Lyme.
    If you got cured after 30 days of one antibiotic you would be a miracle case. We can get the bacteria into remission, but sooner or later it will pop back out. This is how western Med doctors treat...10 to 30 days of one antibiotic, usually low dose doxy. That does not kill off all life stages of the bacteria.

    Hope this helps.

    Good luck!

    Jodie



     
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    Old 04-28-2016, 01:18 PM   #10
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    Re: Lyme MS?

    it is possible to have both MS and Lymes. Several people on the MS board have posted about this. Kim, please continue seeing your doctors- especially if they are MS specialists. As you said, the tests you have had for MS are pretty conclusive....
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    Old 04-29-2016, 06:59 AM   #11
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    Re: Lyme MS?

    Kim there are many bacterial, viral infections that can cause M.S symptoms.
    Beings you have had 2 positive test now, you have Lyme. You are also most likely being misdiagnosed for any co infection such as Bartonella, Mycoplasma, Clamydia Pneumonia, Epstein Barr, Cytomeglovirus, Babesia...ect ect.And parasite infections.

    In your area so many have Lyme as do pets.

    There are 1 to 2 million people that are getting Lyme now each year.

    Also people with Lyme and any co infection can have Chemical sensitivities. This could be why you are having such big reactions off of the medications for 'supposed" M.S.

    30 days or even 2 months of IV antibiotics is NOT enough. You would be a miracle if it cured you. You most likely have chronic Lyme now. I lost the use of my legs and arms, slurred my words, balance issues, throwing up, major pain, encephalitis, chronic meningitis. on and on.

    We all must be our own advocate...but being on meds that are doing you harm and not helping shows you should try another avenue. Many with Lyme have white lesions on their brains and they go away with long term treatment.

    As Tess said even getting to a naturopath that specializes in Lyme treatment is a good start.
    You might want to read up on Bee Venom Therapy also this is inexpensive and can be done at home. One of the leading Lyme docs helped himself and family doing this I am a year in and have had great results.
    You can find info on many treatments from where you are sitting.

    One thing for sure is we all must be our own advocates and look for answers instead of what the main stream medical field wants to label us with, when they have no answers.

    Sending Prayers your way!

    Hugs
    Jodie



     
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    Old 07-05-2017, 06:55 AM   #12
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    Re: Lyme MS?

    I think Multiple Sclerosis is ultimately clinical diagnosis like Lyme disease. If I did not have a history of very exaggerated reactions to the use of antibiotics (herx reaction?) for other treatments, I would be leaning more towards an MS diagnosis.

     
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