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becky723
Regular Member


Date Joined Feb 2009
Total Posts : 31
   Posted 2/22/2009 4:01 PM (GMT -6)   
i was hoping to find out if there was a way to tell them apart. i was bitten and treated for lyme 25 yrs ago, recently(maybe 5 yrs) i've had neuro and muscular symptoms. my drs. say the treatment that works will determine what disease i have. most of the info i've found is conflicting. have you found anything definitive? i've been on doxy, felt better for a wk or so, not totally better. was put on amox, but quit after one wk due to side effects. now several wks later, i feel pretty normal and wonder if i'm a hypochondriac after all, or will it all come back again. i have pos. lyme test and brain lesions and csf banding. i am so confused. thank you to my fellow sufferers, for your info.

Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 2/22/2009 4:17 PM (GMT -6)   
they sort of have the same syptoms. They both have to do with your immune system. I was reading that someone with Epstein Barr had a very high chance of getting MS.
There is a great book that I got about 4 weeks ago.
LIVING WELL WITH AUTOIMMUNE DISEASE. BY MARY J. SHOMON
And she talks about how all of these disease sort of link to one another if you will.
You will find it very helpful.
:>)
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."


LupnerRN
Regular Member


Date Joined Sep 2008
Total Posts : 350
   Posted 2/22/2009 4:19 PM (GMT -6)   
welcome Becky,

people here are totally awesome and you'll get lots of great info.

well, so far, there's now law that say's lyme can't come back. unfortunetly! The majority of women, for some reason, are allergic to amoxicillin. I am. But I'm glad someone at least has you on doxy.

You can have brain lesions and csf banding with Lyme. I think the most important thing to do would be to see a LLMD. Let us know where you live and I'm sure someone can give you some referrels. More than likely since you have the Lyme history and you've had the symptoms back for about 5 years, it's probably Lyme. From what I've heard about MS, the neuro symptoms would be pretty severe by now. But everyone's different. You never know. So get an LLMD!

Feeling like a hypochondriac is pretty normal with lyme too. So keep on the doxy until you know for sure.

Good luck and many blessings your way,
Lisa
11/07 symptoms start
7/4/08  IGenX LD positive,gluten sensitivity,low magn, low WBC's,+yeast/bacteria/tapeworm/roundworm, EBV,HHV,CMV,Parvo,
7/25/08 started on Biaxin
9/08 IGenX co-infections neg, but probable Bart, Bab, Erhl
11/08  Biaxin,Plaquenil,Cipro, Artemisinin,3 probiotics,Transfer Immune, Bcomplex,MultiVit,omega3,magnesium,
1/29/09  Added: Rifampin 600mg- Ehrl, Lomatium 15dropsBID-parvo, andrographis 15dropsBID (super yuck!)-LD, Alinia-cryptosporidium.   


ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 2/22/2009 4:43 PM (GMT -6)   

Hi becky723, welcome to the board!

Regarding Lyme disease, it is possible you were not treated long enough and/or aggressively enough initially.  It is also possible you were bitten again.  Many people are bitten without knowing it.  What dose of Doxy did you take and how long did you take it?  What dose of Amoxicillin did you take?  What side effects did you have?  Are you still being treated?

Lyme symptoms do wax and wane.  Lyme can cause lesions on the brain.  Which Lyme test did you have done?  You have a positive test and symptoms, I think you should be treated. 

Below is a Lyme symptom list.  You can have any combination of symptoms. 

Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol

It is very important to see a knowledgeble doctor.  Many doctors do not understand Lyme and treat with outdated protocols.  Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma.  Many people who have Lyme are co-infected.  It may affect treatment choice and progress.  It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA.  Have you ever been tested for these?

If you need a doctor recommendation, you can email me at ko_@bellsouth.net 

Are you 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 worse.  It can be very scary, but it is a good sign the antibiotics are working.  Although it can vary individually, many people experience this at the beginning of treatment and every three to four weeks.  I wonder if this is what you experienced?

It is also important to learn as much as possible.  I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses at http://www.ilads.org/burrascano_0905.html  He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols.  I also recommend the books "Everything You Need To Know about Lyme Disease Second Edition" by Karen Vanderhoof-Forschner and "The Lyme Disease Solution" by Kenneth B. Singleton MD.


becky723
Regular Member


Date Joined Feb 2009
Total Posts : 31
   Posted 3/25/2009 7:20 PM (GMT -6)   
thank you everybody, just got back from initial visit with llmd. just waiting for test results now

scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 3/25/2009 8:59 PM (GMT -6)   
Hi Becky, I'm glad you went to see a llmd and wish you luck. 
 
I remember a while back when the doctors wanted to rule out MS, I had evoked potential testing done (e.g., visual, auditory, general sensory).  Even though I was experiencing many neuro symptoms, these tests came back negative so MS was ruled out.  I'm not sure if this would apply to all cases but it might be worth asking your doctor.
 

 


becky723
Regular Member


Date Joined Feb 2009
Total Posts : 31
   Posted 3/26/2009 7:03 AM (GMT -6)   
thanks scorpio, i have a vision test scheduled next month with my neuro.

Scooterscooter
Regular Member


Date Joined Sep 2008
Total Posts : 66
   Posted 3/26/2009 12:10 PM (GMT -6)   
Last May I was diagnosed with M.S. by a neurologist. He ordered MRIs of brain and spine.

Went to a lyme dr. and he began treating me for lyme and bart in July.

He ordered MRIS in Dec. to compare to May MRIs. One flair in T spine is gone. Spots on white matter in brain MRI are smaller. Something new in c spine which could have occurred between May and July. He said we are on the right path and he has seen M.S. caused by lyme to completely reverse.

Every time I have started a new antibiotic I have felt worse for a while before feeling better. It's a long road, but I know that even when I feel better that I will not be well until he thinks I'm done with treatment.

ShawnCOmtngrl
Regular Member


Date Joined Apr 2007
Total Posts : 35
   Posted 4/4/2009 9:42 AM (GMT -6)   
Hi Becky,

I have been living with the diagnosis of MS since Lyme was ruled out in 1994 by a neurologist. However, being in Colorado where MS is prevalent doesn't help, either. I was "re-diagnosed" with MS at the Mayo Clinic in 2006 due to the nature of the lesions on my brain. The lesions center around the ventricles in people with MS. However, I visited a holistic practitioner, then a LLMD within 2 months of my visit to the Mayo Clinic, and both told me that my issues stem from a VERY long battle in my body with Lyme disease, and that I probably have NEVER had MS. While I have read about both, I am confused as well. Having MS as a diagnosis fortunately enabled me to be on SSDI, as I am only 34 and in so much pain that I cannot work. I guess that makes me lucky in some way. However, I believe in my heart that I have had Lyme all of this time, but I am frightened and discouraged by the literature that says when a person has late-stage Lyme then often damage to joints is permanent. Oh, I don't want to accept that information. I was running and working out 6 days a week 5 years ago, now I cripple up when I walk from pain in my hip joints and muscular spasms. Trust me, I do NOT look like I have multiple sclerosis. (physically OR clinically, in my opinion). If you find anything out in your journey, please do share! I'm so confused out here in Colorado where MS is the disease of the day, NOT LYME, which I believe I have!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Diagnosed MS in 1994, used Avonex for years, then diagnosed Lyme in 2006, working on healing now!

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