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  • Lyme diagnosis after 10 yrs of MS symptoms

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    Old 11-28-2004, 07:09 AM   #1
    Carl Erik
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    Lyme diagnosis after 10 yrs of MS symptoms

    I'm new to this formum and lyme community. My story is very similar to many of yours. In 7/95, my vision began to dim and the doctors were puzzled. By 12/95 it got so bad that the neuro-opthomologists ordered a MRI where they saw lesions and diagnosed me with MS. Every doctor that I've ever seen said the same thing: your symptoms don't fit the profile for MS. I was tested for lyme using the Western Blot but it was an IGG equivical. Since then it's been MS and injections since 1999. I was injecting once a week for 2 years but as my symptoms worsened, I begain the every other day injections - 3 years and still getting worse!!!

    My wife's message therapist recommended a doctor that specializes in alternative therapies, so I made an appointment in 8/04. He tested me for blood mercury and lyme. The Western Blot IGG was negative but the IGM was definately positive (+39 kDa, ++41 kDa). I was shocked! He started me on Fluconazole 200mg daily for one week and will start IV Rocephin daily for 4 weeks and Zithromax 600mg daily for 4 weeks on Friday. I hope it helps to restore some of my balace, coordination, dizziness, numbness, tingling, strength in legs, on and on. I'm still in stock over this new diagnosis.

     
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    Old 11-28-2004, 08:22 AM   #2
    bunnee
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    Re: Lyme diagnosis after 10 yrs of MS symptoms

    Im really interested to see what the mainstream dr's say when our lesions disapear. I went blind as a bat, optic neutitus x2, evoked potentials, numb fingers, foot, positive oligclonal bands but i never let them convince me into ms meds thank god. When i was in hospital and had a lumbar puncture i begged them to do a western blot and or culture the fluid and they told me they did and it was negative. I later found out they lied when Iasked for the results on paper a few yrs later and never did any test for lyme. There i was.. 4 days in hosptal, a lumber puncture, solumedrol, blind and half dead. They are so stupid lol. I will be the big mouth they are going to hate one day. Watch me on montel lol. I havnt started lyme meds but i will be in the next few weeks. I had to research first, but Im ready and convinced now.

     
    Old 11-28-2004, 08:53 AM   #3
    Ozarka
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    Re: Lyme diagnosis after 10 yrs of MS symptoms

    Wow,
    What you both are going through is tremendous and I wish you the best.
    I'll look for you Bunee on Montel!

     
    Old 11-28-2004, 09:14 AM   #4
    ncgirl88
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    Re: Lyme diagnosis after 10 yrs of MS symptoms

    Hi Carl Erik -

    It is your's and Bunnee's stories along with many others that just make me seethe with anger at the medical community - and the lack of education. All the misconceptions and this strange denial that swarms around lyme disease...I don't understand why it is this way. I thought it was money but then someone told me her story about how the company she was working for (a major drug company) paid out tons of money - she saw over 20 doctors and had 3 surgeries all related to on the job injury. She was having excrutiating pain in her joints...she kept telling these doctors she had been bitten by ticks...she had the bulls eye rash yet none of them diagnosed her with lyme...they did shoulder, elbow and wrist surgeries. She had to stop working and finally she was diagnosed with lyme...her company paid out tons of money though that they could have saved had she been diagnosed properly in the first place.

    With this in mind...then I think well maybe it is just simple lack of knowledge...while this is a factor I don't think it is the final answer...

    There is this weird political cloud that hangs over the subject of lyme and tick borne illness. It is also influenced by the economy. If people really spoke about lyme then tourism in certain areas wouldn't be as successful. Proper diagnosis would also mean less sales of drugs that treat arthritis...

    I am just thinking and babbling out loud here...I just can't come to terms that with the technology that we possess in this country...with the amount of brilliant physicians that lyme and tick borne illness is so under diagnosed. I can't deal with hearing stories like yours...knowing you have been injecting yourself with MS drugs all of these years while the lyme bacteria multiplied. It just makes me so MAD at the system!!!! I know how tough my last 7 months have been - I can't imagine almost 10 years of this, of what you have been through.

    Change must happen.

    I am so glad that you have found an answer. I am praying that you respond favourably to treatment and you are on your path to wellness. I am sorry for what you have been through. I have only felt about 1/10th of your pain at the most but as I write I am in tears. No one should have to go through what you have been through. No one. I hope that when you are feeling better that you can go in to the doctors that diagnosed you with MS and share these latest developments or that you can write them. They need to be educated and enlightened.

    Here's to never giving up hope!...

    ncgirl88

     
    Old 11-28-2004, 09:46 AM   #5
    dealer1111
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    Angry Re: Lyme diagnosis after 10 yrs of MS symptoms

    Count me in as being ****** too.

    Should have been cured 30-years ago -like many of you.

    The doctors screwed us up into years of pain, loss, and anger...
    And they are still doing it?

    Boo

     
    Old 11-28-2004, 10:31 AM   #6
    ncgirl88
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    Re: Lyme diagnosis after 10 yrs of MS symptoms

    Ekim1111 -

    I definitely count you in! Your story like the two here just burn me up.

    I think what struck me about Carl Erik's is the fact that they actually went to the extent of prescribing the MS drugs even though over and over physicians kept saying he didn't fit the MS profile - the fact that they diagnosed him with a definitive diagnosis...without leaving the window open to creative thinking...to mulling over all the possiblities...

    Ekim - how is the website planning going? I am with you like so many here. I just can't let this go. I am serious. I don't think I am going to be one of the ones that gets better and disappears from this board. I really feel that I am meant to help. I am going to help.

    Ekim - you are a big inspiration to me here. I see you as your hope rarely wanes and how you want to make a change too...you are simply amazing

    Hope you had a Happy Thanksgiving!

    -ncgirl88

     
    Old 11-28-2004, 11:12 AM   #7
    Jacquie23
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    Re: Lyme diagnosis after 10 yrs of MS symptoms

    that is a really good idea! to get well and not leave the board, I mean you can give hope to MANY ppl. I don't think there is anyone here that is well, and can talk about it. that would be nice.

     
    Old 11-28-2004, 11:19 AM   #8
    Jacquie23
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    Re: Lyme diagnosis after 10 yrs of MS symptoms

    I just did a search on Lyme organisations in my area. and I found this post by a girl named Carryon it it goes well with the post I JUST made above.

    ***
    I am better. I can walk again.
    I am better. I have stopped jerking and twitching.
    I am better. I can stand on one foot without losing my balance.
    I am better. I do not have to use my cane.
    I am better. I can stay awake most days.
    I am better. I sleep at night most nights.
    I am better. I feel warmer.
    I am better. I have no pain.

    I am thankful for all these things.

    I am better EXCEPT that I still cannot remember who you are or recognize your face.
    I am better EXCEPT that I get flustered so easily. Not like the professional career woman that I was.
    I am better EXCEPT that I cannot organize myself well enough to plan and cook a meal.
    I am better EXCEPT that I still have trouble reading.
    I am better EXCEPT that I still cannot work.

    I was so happy to finally have a diagnosis and when I responded so well to treatment. I do not want to appear ungrateful but I still want my life back. I have not relapsed. I am just realizing that Lyme has changed everything in my life. The cognitive things are SO SLOW to come back.

    Carryon

    (4 years with unexplained progressive neurological symptoms, 9 weeks of IV ceftriaxone also Zithromax, Ceftin for 4 months, off all antibiotics since August, doing well except…)

     
    Old 11-28-2004, 11:36 AM   #9
    bunnee
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    Re: Lyme diagnosis after 10 yrs of MS symptoms

    I dont ever plan to let this go. Once im better Ill start my mission but I have also learnt that the most important thing is to never try to fight without your strength. I have anger too, its just very burried right now. I'll let it out when its safe. Raising a fuss right now only puts our treatment in jeopardy as well as our Dr's. As for my opinion on why they try to burry lyme and its friends...

    #1 -I think the drug companies dont want antibiotics used on any chronic diseases because it increases the risk of resistance of other microbes and renders the drug less powerful.Then they fall behind the competition and loose thier position in the drug industry and then thier stocks fall, then with it thier future research funds.

    #2- I think somehow this recent outbreak of lyme will somehow be traced to gulf war illness be it by (A) troops getting bitten ( b) something spawned and mutated from the vaccine or (C) the information being exposed that the usa actaully sold genetically engineered lyme to iraq once upon a time.
    I dont know how much of it could be true but then what ive been through is just as unreal so Ive learned to dig into anything no matter how unreal it sounds.

    I research everything, Ive had no choice. My advice... use the anger's energy, transform it to power and use the power for healing. We can all get better if we fight hard enough. Prayer, meditation, saunas, herbs, do it all, whatever you can afford. Never stop looking for answers, never stop asking questions just fight fight fight and never EVER give in.

     
    Old 11-28-2004, 02:03 PM   #10
    dealer1111
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    Re: Lyme diagnosis after 10 yrs of MS symptoms

    I am working on it as promised!

    Last edited by dealer1111; 11-28-2004 at 03:04 PM.

     
    Old 11-28-2004, 03:22 PM   #11
    sleeperwoken
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    Re: Lyme diagnosis after 10 yrs of MS symptoms

    Yep, count me in, too, I'm pretty disappointed about all the years I lost and all the dollars to doctors who told me I was "stressed." Yep, I was stressed alright. No kidding.

    Jacquie, thank you for sharing that information, I felt so happy when I read the line about feeling warmer. I pray that I feel warmer again some day, my hands are so cold it's embarrassing to shake anyone's hand. One time I extended my hand to someone and I was saying to them, "are you warm?" then they took my icy hand and they answered, "are you dead?" Well...that's pretty cold then, hmmm?

    Oh, well. I really appreciate all of you so much. Thank you for all the support and encouragement you offer. Thanks for sharing your stories, you are amazing people.

     
    Old 11-28-2004, 04:20 PM   #12
    ncgirl88
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    Re: Lyme diagnosis after 10 yrs of MS symptoms

    Hey Jacquie -

    Thanks for those posts...CarryOn sums it up for many.

    SleeperWoken, I know your hands will be warm again one day, you know what they say though, "Cold Hands, Warm Heart" I hope you took that opportunity to explain to that person that Lyme affects blood circulation. Like others who I have spoken with, I am going to take every opportunity I can to educate others.

    Ekim - Thanks for your work on the Website. I worked as a tech support rep for a small software company at one point and did some website design. I am VERY rusty but if there is anything I can do let me know.

    You know SleeperWoken you are right about the people on this board...AMAZING people. You know so many people I know that have chronic illnesses say they do not want to go to support groups or participate because there are so many people just moaning and groaning...I am finding lyme and tick borne illness sufferers much different - they are determined, curious people. Yes, there are times we need to moan and groan - it is all part of it but mostly here we exchange information and hope. It says a lot about the Spirit of these people. What good company!

    -I hope you all had a Happy Thanksgiving!

    ncgirl88

     
    Old 11-28-2004, 04:57 PM   #13
    ncgirl88
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    Re: Lyme diagnosis after 10 yrs of MS symptoms

    Hi Carl Erik -

    Be sure you take high quality probiotics through your treatment...in fact I would start that now and take double the dosage on the bottle. I am sure your alternative doctor has probably outlined this for you already but if you need pointers in this area there are many on this board that can explain this more thoroughly.

    Please keep us posted on this journey to wellness you are embarking on.

    ncgirl88

     
    Old 11-28-2004, 05:54 PM   #14
    ticker
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    Re: Lyme diagnosis after 10 yrs of MS symptoms

    Hi Carl Erik, welcome to the board!

    Many people who have Lyme were first disgnosed with other diseases, including MS. I am very sorry that you were one. The good news is that you have been diagnosed and you are starting treatment. It is excellent that this alternative doctor tested you for Lyme. What injections were you getting when being treated for MS? Were they steroids?

    What dose of Rocephin will you be taking? Also, is the doctor planning on treatment for longer than four weeks? Four weeks of treatment is never long enough for Lyme, even if an infection was caught within two weeks. Many doctors do not understand tickborne illnesses and follow outdated treatment protocols. Untreated or undertreated Lyme disease can be serious.

    Besides Lyme disease, ticks can transmit several co-infections, including Babesiosis, Bartonella, Ehrlichiosis (HME & HGE), and Mycoplasma. Many people who have Lyme are co-infected so it is important to be tested. Have you been tested for these by a Lyme reputable lab such as IgeneX?

    Please know that it is normal to feel worse before feeling better when getting treated, and it can take time to recover. Be aware of the Jarisch-Herxheimer Reaction (herx). Often when people who have Lyme take antibiotics, their symptoms become worse or they get new ones. When the antibiotics kill the bacteria, toxins are released making them feel sicker. It can be scary when it happens, but it is a good sign the antibiotics are working.b

    It is important to learn as much as you can. I recommend the book "Everything You Need To Know About Lyme Disease (2nd edition)" by Karen Vanderhoof-Forschner. It has a lot of good information.

    Hang in there okay? You are on your way to better days.

    Last edited by ticker; 11-28-2004 at 06:26 PM.

     
    Old 11-29-2004, 04:00 PM   #15
    Carl Erik
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    Re: Lyme diagnosis after 10 yrs of MS symptoms

    Thanks everyone for the information and support. I hope this is truely the anwer and that my doc has the right cure. I still work but if I could just get back 25% of what I lost (currently @ 50% capability) and stay that way, I would be eternally grateful.

     
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