How do you know if its Lyme or Fibro or both?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Hopegirl
Veteran Member


Date Joined May 2008
Total Posts : 704
   Posted 6/25/2009 10:32 AM (GMT -7)   
Hi
 
Still trying to figure out what is what, my rhuemy said it depends on who you talk to, some will say Lyme then Fibro, some say both??? The symptoms seem to be the same.
 
 
Monica
 
Lymes, Fibromyalgia, Anxiety, IBS, Reflux, Insomnia,
Taking it one day at a time.... 


ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 6/25/2009 10:47 AM (GMT -7)   

Hi hopegirl.  Have you been diagnosed with Lyme?  If so, have you been treated by a knowledgeable doctor?

Some people who have Lyme were first diagnosed with other diseases inlcuding CFS, Fibromyalgia, MS, and ALS.  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

In my opinion, the most important thing someone can do to rule out or confirm Lyme disease is to see a knowledgeable 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  Many doctors do not understand Lyme and treat with outdated protocols.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  

It is also important to learn as much as possible.  I recommend reading Dr. Joseph Burrascano's 2008 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses at http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf  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 M.D.


Hopegirl
Veteran Member


Date Joined May 2008
Total Posts : 704
   Posted 6/25/2009 12:07 PM (GMT -7)   

Hi Ticker!

Sorry I wasn't more clear, yes I was diagnosed last Friday with Lyme. Prior to that I was diagnosed with Fibo 13 months ago but feel that I have had it for atleast 5 years prior to that.  At of all the possible symtoms you listed, I have all with the exception of the first one you listed. I was in the hospital 2x's within the last 2 years one for extra beat-palpitations that no one not even the cardio Dr's could explain, then again a few weeks ago with the chest pain and shortness of breath that once again they could not figure out what was wrong. I thought they were running every blood test under the sun, but I guess not because it was not until 2 weeks later that I had came in to my primary with flu-like symptoms and pain the they ran some tests that came back with positive results for Lyme.

Its just hard because honestly I feel like all of these things I've had for some time. My doctor did start me on a course of antibiotics which I take 2X's a day. I also have an appointment to see a Lyme specialist in the beg of July.

I did have Bells P but that was over 11 years ago. No heart problems valvue or murmurs



 
 
Monica
 
Lymes, Fibromyalgia, Anxiety, IBS, Reflux, Insomnia,Sleep Apnea
Taking it one day at a time.... 

Post Edited (hopegirl) : 6/25/2009 1:10:32 PM (GMT-6)


ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 6/25/2009 1:08 PM (GMT -7)   

Hi Monica.  What antibiotic and dose are you taking?

Has the doctor you will be seeing been recommended by a Lyme patient or support group?

Do you ever have night sweats and muscle weakness?  These symptoms along with shortness of breath and heart palpitations are hallmark symptoms of the co-infection Babesiosis.   Make sure you are tested for all the co-infections.

Good luck at your upcoming appointment!


Hopegirl
Veteran Member


Date Joined May 2008
Total Posts : 704
   Posted 6/25/2009 1:26 PM (GMT -7)   
Thank You So Much for the information Ticker


My primary is giving me doxycycline
I have a friend who was very sick with Lyme and has been after me for over a year to get tested for it. She always said my symptoms are the same ones that she had with Lyme. She recommened a Lyme Specialist in the Chester County PA area.
I can't beging to tell you about the muscle weakness that I have been having in my thighs. Sometimes I need help to get up especially if its at night or I've been sitting for a long time, I usually have to really pull myself up with my arms. (And I'm not a small gal either!! LOL)

I wonder why they didn't find this when I was in the hospital????


 
 
Monica
 
Lymes, Fibromyalgia, Anxiety, IBS, Reflux, Insomnia,Sleep Apnea
Taking it one day at a time.... 

Post Edited (hopegirl) : 6/26/2009 1:05:51 PM (GMT-6)


Hopegirl
Veteran Member


Date Joined May 2008
Total Posts : 704
   Posted 6/26/2009 8:13 AM (GMT -7)   
I dunno. Al my doctor said was that the test showed I have lyme and here is your antibiotic. I have to go by there today to pick up some forms so I will ask that info.
 
 
Thanks
 
 
Monica
 
Lymes, Fibromyalgia, Anxiety, IBS, Reflux, Insomnia,Sleep Apnea
Taking it one day at a time.... 


ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 6/26/2009 8:58 AM (GMT -7)   

Hi hopegirl.  What dose of Doxy are you taking?  There are some important tips to know about taking Doxy.  Do not have any dairy, iron, or magnesium products within two hours of taking the Doxy, or it will not be absorbed properly.  If it makes you nauseous, eat something substantial and non-dairy before taking it.  Avoid the sun.  You can get a severe burn in minutes even when wearing sunscreen.  Do not lay down for at least an hour after taking it or you can ulcerate your esophagus.  This is very painful.  Drink a full glass of water when you take it for the same reason.

Please edit your post (by clicking on the pencil icon) to show just the doctor's initial and not the full name.  Doctor names are not posted on the board.  Is this doctor with a Lyme treatment center? 

Unfortunately, many mainstream doctors do not check for Lyme even in endemic areas.


RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 6/26/2009 11:07 AM (GMT -7)   
he is what i know of fibro, its a tag name meaning you have extrem pain and no reson for it. that they can come up with. lyme can and does cause extrem pain. but then again Dr.s do not like to Dx lyme or treat it. if you know or think you have lyme plz go to a LLMD if at all possable.

i know i have lyme. i have the paperwork to prove it, was sent to the disabletiy Dr. for a checkup and they asked me if anyone had thought i had fibro. i didnt say a thing about lyme to them....lol
   RD
                                                                                                                 
 
still looking for answers
 


Hopegirl
Veteran Member


Date Joined May 2008
Total Posts : 704
   Posted 6/26/2009 12:22 PM (GMT -7)   
Update:
 
Thanks Ticker for the heads up on changing my post wink
I'm looking at the test results now and I tested positive for:
 
Lyme disease AB (IMG) WB 
 
(I'm not sure how to read this so bear with me)
 
39KD Band   reactive
41KD Band   reactive
 
It also looks like I tested high for Epstein Barr VCA
And Epstein Barr EBNA
 
Yes Lymekiller I do get the fog something bad!!!
 
I take doxy 100 mgs X2 a day
 
RottenDog,
Yeah, its crazy how things overlap with symptoms for both. According to my rhuemy she thinks I have Fibro and Lyme, when I asked her why she said that in addition to all my fibro symptoms plus sleep apnea. Hopefully when I go see the specialist, he can shed some light on whats going on and if I need additional treatment he can give it to me.
 
Okay I'll be waiting to hear from you all on my tests please
 
Thanks
 
 
Monica
 
Lymes, Fibromyalgia, Anxiety, IBS, Reflux, Insomnia,Sleep Apnea
Taking it one day at a time.... 


veromia333
Veteran Member


Date Joined Mar 2009
Total Posts : 674
   Posted 6/26/2009 10:40 PM (GMT -7)   
They are calling your pain from lyme fibro. They are one in the same not seperate.
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.


Mazfire
Veteran Member


Date Joined Oct 2008
Total Posts : 1683
   Posted 6/26/2009 11:27 PM (GMT -7)   
RottenDog said...
he is what i know of fibro, its a tag name meaning you have extrem pain and no reson for it. that they can come up with.

 
Its alot more complicated than that. It is a complex and very real condition.
 
Maz
                        Co-Moderator Anxiety & Panic- Depression
 
 
 
'He heals the broken hearted and binds up their wounds.' (Psalm 147:3)
 
Panic Disorder, Agoraphobia, CFS, Fibromyalgia, Chronic Sinusitis, TMJ disorder, Endometriosis, PCOS, Chronic E.N.T and Upper respiratory tract infections, Reactive Arthritis, IBS, Anemia, Chemical/Noise/Light sensitivity, Trichotilomania, Seasonal Mood  Disorder, OCD, Benign Vertigo,  Impaired immune system. Tachycardia,
Low clotting factor= bruising. Tendonitis, Bursitis. Meds: Zoloft 150mg. Xanax 4mg. Celebrex. Mobic. Panadeine Forte. Digesic. Nexium.  Codeine Phosphate. Phenergan. Multiple surgeries- I bear the scars of my poor physical health.
Age:29. AP first DX @ 10. Fibro etc DX @14. Proud Aussie.
 
 


RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 6/26/2009 11:34 PM (GMT -7)   
Mazfire,

i know its real as i have a friend who has it. but as i said its a tag name, as they to date do not know what causes it. and i know behond a doubt i have lyme disease and the Dr. here wanted to tell my it was fibro. so they wouldnt have to deal with me and lyme.

i mean no afince to you or anyone else here. i am going by what i know and heard of by someone who has had it for many yrs now.

i also belive if Dr. dug deep enough they would come up with a reson for all the pain fibro causes. could be from lyme and it could be from something else.
   RD
                                                                                                                 
 
still looking for answers
 


Mazfire
Veteran Member


Date Joined Oct 2008
Total Posts : 1683
   Posted 6/27/2009 4:51 AM (GMT -7)   

Thankyou for clarifying that. Appreciate it.

Maz


                        Co-Moderator Anxiety & Panic- Depression
 
 
 
'He heals the broken hearted and binds up their wounds.' (Psalm 147:3)
 
Panic Disorder, Agoraphobia, CFS, Fibromyalgia, Chronic Sinusitis, TMJ disorder, Endometriosis, PCOS, Chronic E.N.T and Upper respiratory tract infections, Reactive Arthritis, IBS, Anemia, Chemical/Noise/Light sensitivity, Trichotilomania, Seasonal Mood  Disorder, OCD, Benign Vertigo,  Impaired immune system. Tachycardia,
Low clotting factor= bruising. Tendonitis, Bursitis. Meds: Zoloft 150mg. Xanax 4mg. Celebrex. Mobic. Panadeine Forte. Digesic. Nexium.  Codeine Phosphate. Phenergan. Multiple surgeries- I bear the scars of my poor physical health.
Age:29. AP first DX @ 10. Fibro etc DX @14. Proud Aussie.
 
 


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17528
   Posted 6/27/2009 7:41 AM (GMT -7)   
Hi, Rotten Dog! They have been digging deep, looking for a reason for the pain of fibro for many, many years.  I have had fibromyalgia for 22 years and have had all other illnesses checked out...including Lyme.  Some researchers think this is a neurological problem...the brain sending wrong signals that is causing the pain and many of the myriad of symptoms we have.  I'm a mod on the fibro forum and I always tell newbies to be throughly checked out to rule out other health problem, since fibro has many of the same symptoms.  I also tell them about Lyme Literate doctors and Igenx in Palo Alto.  And I send them to this forum if they think they might have Lyme.
 
Here are links to sites where medical doctors researching fibromyalgia give responses to people who think this is a catch-all problem or some other illness.  You will learn a lot! 
 
 
 
Sherrine 


Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7

Post Edited (Sherrine) : 6/27/2009 8:56:08 AM (GMT-6)


RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 6/27/2009 10:48 AM (GMT -7)   
Sherrine, thank you for the info. i will also pass it on to my friend who has it.
   RD
 
still looking for answers.
 
Remember that advice if free, its your choice what you do with it.  :)

New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, December 17, 2017 9:15 AM (GMT -7)
There are a total of 2,906,429 posts in 318,957 threads.
View Active Threads


Who's Online
This forum has 158298 registered members. Please welcome our newest member, Naheedzzz.
288 Guest(s), 10 Registered Member(s) are currently online.  Details
PeteZa, Worriedsicked, Dahlias, mikeb2308, Judy2013, astroman, Maverick6981, Saipan Paradise, OriolCarol, straydog