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Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 6/11/2009 6:22 PM (GMT -6)   
The main reason I think I have MS and not Lyme is because my symptoms 'appeared' about two weeks after I had a bad virus. MS has been known to show its face after things like this - things that would set off your immune system.
 
I know I have some positive bands but it's just not enough to sway me, I suppose.
http://www.myspace.com/399827188


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 6/11/2009 6:52 PM (GMT -6)   
Lyme can lay dormant in the body until another immune system stress (such as a virus) lowers the immune system enough for the Lyme to rear its ugly head...

Also, treating for Lyme won't make the MS worse, but MS treatments typically suppress the immune system and likely would make Lyme worse.


-Razzle
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Pancytopenia, chronic malabsorption/malnutrition, etc.; G-Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, IV Ceftazidime, Heparin (to flush PICC line), Claritin, Colloidal Silver (used topically), probiotics, homeopathy.


veromia333
Veteran Member


Date Joined Mar 2009
Total Posts : 674
   Posted 6/11/2009 7:54 PM (GMT -6)   
We told you everything we can MS is the damage of your nerve sheath. Something damaged the nerve sheath.
What? they dont know. But I know that Lyme spirochetes can damage the nerve sheat by drilling through it. Im sure there is another bacteria or something that does it to. But i believe in most cases its Lyme Im sending you the DVD under our skin tom i had technical difficulties but it is copied and the post office is closed already. I'm not going to try to convince you anymore. You can watch the movie and decide for yourself. Razzle is right Your immune system can deal w lyme for a long time until lyme works it away enough to start taking over thats when real symptoms arise. A virus can absolutly cause a drop in immune fuction creating a gate for Lyme. Do you know how lucky you are to test positive. Very sick people dont test positive, because the immune response is so low and tests look for antibodies which have been depleated. Have you ever taken antibiotics like perhaps before you took your western blot. this may have raised your antibodies up enough to detection. Last thing if youve had any blood tests let me know what is hi or low . id like to anylize your blood results im becoming good at reading lyme signs. also you should ask your lyme doc for a cd-57 test . whats the tech term guys? I think its a Stricker panel. the immune system is lowered in lyme your cd-57 cells are your immune systems killer cells whic in lyme patients is low. The only other disease that causes this is AIDS That tells you how bad this can be huh! Ok i'm done Luv-V
The line is faded not showing where Lyme came in. I became a new Mommy n my Lyme decided to show itself. Swollen elephant like knee and finger and limiting back pain. Bell's palsey, weight loss as if I had no muscle on my bones anymore. And much more text book lyme symptoms. To a Lyme doc, after alot of there is nothing wrong with you and a recommend to counceling,he said V this is Lyme. What kept me pressing on I had Lyme while I was pregnant. I know I was not infected while pregnant. I am watching her with an eagle eye. God Bless everyone. Love Veronica. Were the ones who know about Lyme not the doctors. Isnt that just mad? Backwards. Alice in wonderland.


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 6/11/2009 8:08 PM (GMT -6)   
Vitamin B12 deficiency can also cause damage to the nerve sheath. Lyme can cause Vitamin B12 deficiency, too...
-Razzle
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Pancytopenia, chronic malabsorption/malnutrition, etc.; G-Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, IV Ceftazidime, Heparin (to flush PICC line), Claritin, Colloidal Silver (used topically), probiotics, homeopathy.


Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 6/11/2009 9:33 PM (GMT -6)   
V,

I never tested positive. I just had a couple of positve/IND bands...I started treatment yesterday, so we'll see what happens.

My blood tests have always been normal.

I look forward to getting the mail in a few days...thanks so much.
Current treatment (began June 10th 2009):
Biaxin 1000mg/day, Pulsing Flagyl 500mg/day 1 Week Every Month
 
 

veromia333
Veteran Member


Date Joined Mar 2009
Total Posts : 674
   Posted 6/11/2009 10:25 PM (GMT -6)   
Didnt you have pos 39?
The line is faded not showing where Lyme came in. I became a new Mommy n my Lyme decided to show itself. Swollen elephant like knee and finger and limiting back pain. Bell's palsey, weight loss as if I had no muscle on my bones anymore. And much more text book lyme symptoms. To a Lyme doc, after alot of there is nothing wrong with you and a recommend to counceling,he said V this is Lyme. What kept me pressing on I had Lyme while I was pregnant. I know I was not infected while pregnant. I am watching her with an eagle eye. God Bless everyone. Love Veronica. Were the ones who know about Lyme not the doctors. Isnt that just mad? Backwards. Alice in wonderland.


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 6/12/2009 8:47 AM (GMT -6)   
Jen,

Good luck with your treatment. Email me if you want to talk, vent or just ask questions.
2003 symptoms started;panic attacks,anxiety,heightened senses.
2007 Diagnosed with Lyme. Didn't start treatment.
2008 symptoms came back with a vengence.
2009 Diagnosed with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Biaxin 250mg to start,Mepron,Ultram,Thyro Complex 60mg,Probiotics and supplements


Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 6/12/2009 9:20 AM (GMT -6)   
My 39 was IND both times I was tested.
Current treatment (began June 10th 2009):
Biaxin 1000mg/day, Pulsing Flagyl 500mg/day 1 Week Every Month
 
 

veromia333
Veteran Member


Date Joined Mar 2009
Total Posts : 674
   Posted 6/12/2009 11:00 AM (GMT -6)   
Lyme neurotoxins can cause damage to sheath. the toxins gravitate to fatty tissue like nerves, brain,lung,ect. I just want you to know MS does not stand alone something causes it. You prob have lyme induced MS
The line is faded not showing where Lyme came in. I became a new Mommy n my Lyme decided to show itself. Swollen elephant like knee and finger and limiting back pain. Bell's palsey, weight loss as if I had no muscle on my bones anymore. And much more text book lyme symptoms. To a Lyme doc, after alot of there is nothing wrong with you and a recommend to counceling,he said V this is Lyme. What kept me pressing on I had Lyme while I was pregnant. I know I was not infected while pregnant. I am watching her with an eagle eye. God Bless everyone. Love Veronica. Were the ones who know about Lyme not the doctors. Isnt that just mad? Backwards. Alice in wonderland.


Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 6/12/2009 1:41 PM (GMT -6)   
I don't want to have MS of ANY kind...lyme induced or not...I want to get better...
Current treatment (began June 10th 2009):
Biaxin 1000mg/day, Pulsing Flagyl 500mg/day 1 Week Every Month
 
 

Turquoise Sky
Regular Member


Date Joined Apr 2009
Total Posts : 250
   Posted 6/12/2009 4:08 PM (GMT -6)   
The ID MD who does not even believe in chronic Lyme, agreed to treat me as if it was Lyme, and if my symptoms didn't improve in the 28 day course of IV abx, she would have said it wasn't Lyme. It seems to make so much more sense to treat it agressively as if it is, and then if it isn't you go from there. If you have an ongoing infection and don't treat it, it can get so much worse. Do you really want to take that chance?

Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 6/12/2009 4:10 PM (GMT -6)   
I can barely function today...I stand up and I'm sweating...I'm so anxious and off balance and dizzy and feel like my legs are just going to give out beneath me...

I want to scream
Current treatment (began June 10th 2009):
Biaxin 1000mg/day, Pulsing Flagyl 500mg/day 1 Week Every Month
 
 

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 6/12/2009 5:12 PM (GMT -6)   
Hang in there.  I am sorry are so miserable.  I hope you feel better real soon. 
Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


veromia333
Veteran Member


Date Joined Mar 2009
Total Posts : 674
   Posted 6/12/2009 5:39 PM (GMT -6)   
You know why he did that Turquoise sky because he knows it lyme. But to bad thats not enough medicine and it needs backed up by probiotics
The line is faded not showing where Lyme came in. I became a new Mommy n my Lyme decided to show itself. Swollen elephant like knee and finger and limiting back pain. Bell's palsey, weight loss as if I had no muscle on my bones anymore. And much more text book lyme symptoms. To a Lyme doc, after alot of there is nothing wrong with you and a recommend to counceling,he said V this is Lyme. What kept me pressing on I had Lyme while I was pregnant. I know I was not infected while pregnant. I am watching her with an eagle eye. God Bless everyone. Love Veronica. Were the ones who know about Lyme not the doctors. Isnt that just mad? Backwards. Alice in wonderland.


Really Lyme
Regular Member


Date Joined Jan 2007
Total Posts : 219
   Posted 6/12/2009 6:25 PM (GMT -6)   
I know how frustraing MS vs Lyme can be. I have been in the battle for over 5 years. Not on Dr in Oregon has ever believed that I have Lyme. And I do test CDC positive 8 times. Have they Dxed you with MS? What tests have you had done?
Finding Peace In This Crazy World !
 
Beth
 
FIRST POSITIVE LYME TEST IN NOVEMBER OF 2004
DX- WITH MS  APRIL OF 2005
DX- WITH LYME JULY OF 2006
FINALLY TREATED FOR LYME JANUARY 2007


Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 6/12/2009 7:33 PM (GMT -6)   
No, I haven't been diagnosed with MS. But I haven't seen a neurologist in over a year either. All the neuros who have looked at my MRIs say the lesions are either from infection, injury, or my migraine history (just as a child).

I'm at a total loss...I wish my lyme tests were conclusive.
Current treatment (began June 10th 2009):
Biaxin 1000mg/day, Pulsing Flagyl 500mg/day 1 Week Every Month
 
 

+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 6/12/2009 8:19 PM (GMT -6)   
Jendays, I am very sorry about your illness too and about how bad you feel. And I understand you questioning all of this. I know it seems like everyone is pushing you to have Lyme.

Maybe we are all one track minded here, but you're here w/ us for some reason -- because Lyme is suspect w/ you, obviously. My understanding that IND on lyme specific bands make us highly suspect of Lyme. Because there was some kind of reaction, just not strong enough within the guidelines to state positive. So I sure would suspect Lyme and would do all I could to rule it out before quitting, even tho that's really difficult.

Also, the symptoms you last complained about can be caused by many things having nothing to do w/ MS. They could indicate Lyme, they could be caused by the stress/anxiety induced by Lyme. Or hypoglycemia induced by Lyme.

Maybe once you've been on treatment for a few weeks you could get the Dr to run another wb and see if anything has changed. I know Lyme is difficult, but that sure sounds like something your Dr should consider, considering the alternatives to Lyme (or Lyme induced MS)
 
Everyone on this post has made significant points. I'm not saying that we know we are right, but I think you should include all these considerations while you are struggling to learn what is wrong.


Lyme in NC in 1971? Suspect TBI: Fully engorged tick followed by high fever and tonsillitis. Follwed by , lumps on neck,  chronic tonsillits w/ constant low grade to recurring high (104) fevers, severe unexplained neck stiffness and acute neck pain.   Followed by tonsillectomy, urinary tract infections, miscarriage, appendicitis while pregant, chronic severe back pain. Followed by depression, mild anxiety, mitral valve prolapse, and hypglycemia.  Was this a TBI??
 
Bit again couple of times, lyme suspect bite Mother's Day 2007. Bite, symptoms, lyme specific antibodies on the most lyme specific band of all = 39 IgG.  Still awaiting appt w/ LLMD.


Really Lyme
Regular Member


Date Joined Jan 2007
Total Posts : 219
   Posted 6/12/2009 9:34 PM (GMT -6)   
I am so sorry. It is so hard not knowing, the battle does not help us heal. Even though I had tested positive for LYme from the begining of the MS DX. I really started to believe I had MS because every DR I saw told me that.
 
And luckily my friends Mother who had dealt with Lyme with her son never stopped telling me it was Lyme. If I did not listen to her I truly believe I would be in a whealcahir by now. I finally started antibiotics and could tell somethin was changing. Thats when I went 3000 miles to Conneticut and got a confirmed DX of Nureo Lyme.
 
It is very hard to treat and took along time. I always stayed on low dose antibiotics and when I stopped it came back. That tells me antibiotics help.
 
Good luck in your battle. Everyone has to decide for themselves what works and what doesn not.
Finding Peace In This Crazy World !
 
Beth
 
FIRST POSITIVE LYME TEST IN NOVEMBER OF 2004
DX- WITH MS  APRIL OF 2005
DX- WITH LYME JULY OF 2006
FINALLY TREATED FOR LYME JANUARY 2007


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 6/12/2009 10:14 PM (GMT -6)   
This is a great/interesting thread.  It is true that both diseases are incredibly poorly understood.  It does appear that MS is often triggered by a viral or bacterial infection.  Some doctors are treating both as it seems that this is not a problem.  As long as you avoid the high dose steroids that are commonly used in MS then you can do both treatments.  Some doctors are precribing both an antibiotic and glatiramir acetate (copaxone). 
 
This seems like a good way to go.  Obviously people with MS have infections like everyone else.  They get perscriptions for antibiotics.  Why couldn't you do both if both are suspected or if the diagnosis is muddy?  If I suspected I had lyme, I would do both.  I am very sure I don't have lyme.  
 
Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


Really Lyme
Regular Member


Date Joined Jan 2007
Total Posts : 219
   Posted 6/12/2009 11:07 PM (GMT -6)   

I was almost ready to start Copaxon. But when we realized that they only came in pre mixed shots we asked if Themersol was the preservative and was told yes. That is Mercury and they want us to inject that everyday. I thought mercury was very bad for your Nuero system.

I would love the drug companies to explain to us why they do such stupid stuff.

Sorry a little of subject but something that really frustrates me. It really makes me wonder if they want us to get better.

 


Finding Peace In This Crazy World !
 
Beth
 
FIRST POSITIVE LYME TEST IN NOVEMBER OF 2004
DX- WITH MS  APRIL OF 2005
DX- WITH LYME JULY OF 2006
FINALLY TREATED FOR LYME JANUARY 2007


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 6/12/2009 11:22 PM (GMT -6)   
There is no preservative used in copaxone. You were misinformed or your information is outdated. You can check this information for yourself. I am very careful about mercury exposure.
Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 6/13/2009 8:12 AM (GMT -6)   
Hello Gretchen,

How are you certain you do not have Lyme? I believe that anyone here who may not have it, would give anything to know for sure that they DON'T have it. Also, many here believe (educated beliefs) that lyme causes MS.

If I have missed your thoughts on this previously, I apologize....
Lyme in NC in 1971? Suspect TBI: Fully engorged tick followed by high fever and tonsillitis. Follwed by , lumps on neck,  chronic tonsillits w/ constant low grade to recurring high (104) fevers, severe unexplained neck stiffness and acute neck pain.   Followed by tonsillectomy, urinary tract infections, miscarriage, appendicitis while pregant, chronic severe back pain. Followed by depression, mild anxiety, mitral valve prolapse, and hypglycemia.  Was this a TBI??
 
Bit again couple of times, lyme suspect bite Mother's Day 2007. Bite, symptoms, lyme specific antibodies on the most lyme specific band of all = 39 IgG.  Still awaiting appt w/ LLMD.


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 6/13/2009 9:12 AM (GMT -6)   
I read here all the time.  I don't have the symptoms you all have.  I live very near the cal. lab Igenex.  I had my PCP order blood work and I paid cash since they don't do insurance......grrrrrrrrrr.  I had no postive or ind bands. 
 
I have had solumedrol for five days to treat MS flares.  That is 1,200 mgs of IV steroids per day for five days straight.  I felt great!  It did wonders for shortening the duration of my flare.  It did not make things worse  as steroids does for Lyme disease.  You all seem to flare much more often than MSers do.  Some of you flare once a month.  That is virtualy unheard of in the MS world. 
 
My MS is very stable and slow progressing.  I have been in remission for just over 2 years with no clinical progression.  I have daily residual symptoms that match my lesion placement.  Those don't vary too much.
 
I work full time as a 5th grade teacher.  I have kids and a husband.  I lead a very active life.  I am not sick day to day like a person with chronic lyme is.  I know this may sound whack..........but I am extremely grateful that I have MS and NOT lyme!
 
I DO believe that lyme is often chronic and very hard to treat.  I believe that it invades interior cell space which makes it hard for antibiotics to do their jobs. I also believe that lyme disease can trigger MS and other chronic autoimmune disorders.  I also believe that I just have MS. 
 
I think lyme is extremely serious disease that is completely misunderstood by the CDC and most doctors.  I believe there will need to be a complete revolution in the medical world before we are successfully treating lyme disease.   
 
I am a huge supporter of this board and everyone on it. 
 
 
Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 6/13/2009 9:18 AM (GMT -6)   
Gretchen,

Thanks for explaining that. So, MS sufferers are NOT in pain everyday right? I'm in pain every.single.day! It didn't start off like that though.
2003 symptoms started;panic attacks,anxiety,heightened senses.
2007 Diagnosed with Lyme. Didn't start treatment.
2008 symptoms came back with a vengence.
2009 Diagnosed with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Biaxin 250mg to start,Mepron,Ultram,Thyro Complex 60mg,Probiotics and supplements


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 6/13/2009 9:58 AM (GMT -6)   
I do have some pain.  It is not horrible.  Some MSers suffer a great deal.  I have nerve pain at the end of the day from being on my feet.  I am a 5th grade teacher and so I am pretty active.  I have three smallish spinal lesions that have caused sensory junk.  I have some spasticity and paralysis in my left knee.  Physical therapy has helped me strengthen that so I can walk pretty well. 
 
My pain is very manageable and predictable.  I know about when it will start each day and I usually manage it without pain meds.  I know how to tailor my daily activities so I can get through with all my responsibilites.  I also have some decent med support for my symptoms.  Since my symptoms don't really change too much from day to day, once you adjust, you can get on with life.
 
My balance is the biggest problems.  I have chronic vertigo and poor balance.  I have three lesions on my cerebellum.  Those cause most of my symptoms.  I have a couple of other brain lesions that are without symptoms. 
Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.

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