Fibro or Lyme?

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james from missouri
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Date Joined May 2009
Total Posts : 432
   Posted 7/26/2009 8:28 AM (GMT -6)   
i know this is an old subject, and i've read threads on this, i didn't want to bump any old threads due to server response. But they seem so close. Is it when they have no idea what you have, they say FIBRO? i'm confused.. Lyme and Fibro are almost the same.. What is the difference between the 2? i' have alot of OCD issues, not to the point where i'm touching stuff all the time. I just have to make sure everything is super organized and sometimes i'll drive around the block to make sure the garage is closed or i have to come back and make sure i turned the stove off.

Btw> i've been having this weird sensation inside my right ear for the past few months, only happens every few days when i wake up, but its like a hair or a bug feeling inside my ear canal that really itches, i have to get a q-tip to itch it? any idea?

1bitten2xshy
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Date Joined Jun 2007
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   Posted 7/26/2009 9:17 AM (GMT -6)   
Do you have positive Lyme specific bands on your WB?

That should be the only clear answer you need!
Co-Moderator Lyme Disease Forum
Life is not about waiting for the storms to pass...it's about learning how to dance in the rain


james from missouri
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Date Joined May 2009
Total Posts : 432
   Posted 7/26/2009 9:30 AM (GMT -6)   
i called igenex on friday, the results are done, my pcp should be getting all the info tomorrow including both WB tests.. i mean 1500 dollars should show something right?

Lovelabs
Regular Member


Date Joined Jun 2009
Total Posts : 367
   Posted 7/26/2009 9:53 AM (GMT -6)   
I think fibro is a made up disease so they can tell someone they have something when their tests are normal. Docs are in Lyme disease denial anyways. I mean there really is no definitive test for fibro, they just press on tender points. And if so many hurt you have fibro. I understand that fibro pain is nerve pain. All of the sudden with no known cause people start getting nerve pain? Ins companies have no problem covering for treatment for this disease...seems very lymish to me. Just my opinion James. Let us know how your results come out. How r u feeling?

1bitten2xshy
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Date Joined Jun 2007
Total Posts : 849
   Posted 7/26/2009 10:28 AM (GMT -6)   
Lovelabs, I do not think it is appropriate to make that statement about Firbo.

How do you feel when people say Chronic Lyme is not real? That is how people with Fibro feel when you make the statement as you did above.

There may be contributing factors to Fibro, but stating it is a made up disease it totally inappropriate on this fourm.


Co-Moderator Lyme Disease Forum
Life is not about waiting for the storms to pass...it's about learning how to dance in the rain

Post Edited (1bitten2xshy) : 7/26/2009 11:44:42 AM (GMT-6)


1bitten2xshy
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Date Joined Jun 2007
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   Posted 7/26/2009 10:29 AM (GMT -6)   
James, hang in there until you get your Igenex results (make sure you get a copy of your lab work) and post your results here.
Co-Moderator Lyme Disease Forum
Life is not about waiting for the storms to pass...it's about learning how to dance in the rain


Sherrine
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Date Joined Apr 2005
Total Posts : 17381
   Posted 7/26/2009 10:44 AM (GMT -6)   
Lovelabs, I'm a mod on the fibromyalgia forum.  I've had fibromyalgia for 22 years and have been tested for Lyme and it has been ruled out.  Fibromyalgia is a recognized illness by the National Institute of Health, the American Medical Association, and the American College of Rheumatology, among others.  
 
Here is some information for you.  It's good to get educated so you don't make statements that aren't accurate.
 
 
 
Thanks, 1bitten2xshy!
 
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) : 7/26/2009 11:23:41 AM (GMT-6)


1bitten2xshy
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Date Joined Jun 2007
Total Posts : 849
   Posted 7/26/2009 11:44 AM (GMT -6)   
Try, read the post and you will see that he has yet to get his test results back.
Co-Moderator Lyme Disease Forum
Life is not about waiting for the storms to pass...it's about learning how to dance in the rain


CajunGrl
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Date Joined Mar 2009
Total Posts : 4717
   Posted 7/26/2009 12:01 PM (GMT -6)   
TryingAnything,

Please don't respond that way to a Moderator. We put in a lot of time and effort on these boards. A little respect would be appreciated.

Thanks.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


1bitten2xshy
Veteran Member


Date Joined Jun 2007
Total Posts : 849
   Posted 7/26/2009 12:10 PM (GMT -6)   
Had you addressed your question specifically to Sherrine LymeKiller, I would have known you were speaking to her. You ask the same questions over and over again to many people.

14. Do not disrespect moderators. Be respectful in both the forums and any private communications with moderators. Moderators are volunteers that donate many, many hours of their own time to help in the forums and chat rooms. Violations of this rule will not be tolerated.
Co-Moderator Lyme Disease Forum
Life is not about waiting for the storms to pass...it's about learning how to dance in the rain


Amy C
Regular Member


Date Joined Jan 2009
Total Posts : 45
   Posted 7/26/2009 12:19 PM (GMT -6)   
My mom was diagnosed with CFS and then Fibro. She has been sick since she was a child and is 50 now. Just found out she has Lyme and many co's last year.

I personally think things like CFS, Fibro, MS, ALS and others are caused by viruses and bacteria or some other problems like toxicity. With most of those diseases they have no known cause. I do know that the symptoms presented in the diseases themeselves are real. I have seen what my mom goes through. I don't necessarily think all of them are Lyme, but maybe viruses or other problems that cause them too.

With my Lyme I have more MS symptoms and arthritis. I was seeking an MS diagnosis before I figured out our entire family really had Lyme. I would wait and see what your test says. I mean you can have both. Like your Lyme could have caused the Fibro. I worry that my Lyme is causing MS.

Amy
--------------------
One BIG Lyme family!! Possibly congential...
~I tested CDC positive 10/08
~My mom Igenex positive 11/08
~My brother Igenex positive 4/09
~My 2 boys some positive & IND bands, clinical diagnosis 3/09
~My youngest has Aspergers too (a form of autism)


Lovelabs
Regular Member


Date Joined Jun 2009
Total Posts : 367
   Posted 7/26/2009 1:22 PM (GMT -6)   
I didn't mean to offend anyone I just didn't explain myself correctly. I am not making light that there are people who suffer horribly with fibro. And I feel bad, just like anyone who suffers from a chronic illness is horrible. I guess I just don't understand (and this is part of the madness with Lyme) that fibro is recognized and that is a long term chronic condition that people suffer with. Lyme is only recognized in it's earliest stages. I understand that many don't believe in chronic Lyme. To me the 2 seem similar. That is the point I was trying to make. I chose the wrong words by calling it a made up disease. I am sorry. I agree viruses, bacteria etc can set something off in our immune systems and cause all sorts of havoc. I guess I just don't get why fibro seems to be pretty well understood by the medical community and Lyme isn't. I truely am sorry if I offended anyone with my wording. I didn't mean to.

+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 7/26/2009 1:59 PM (GMT -6)   
I believe that Amy is so right. 
 
It is so unproductive for folks on here to argue about who has what. It would be very productive, on the other hand, if folks could have discussions and ask their questions without shoving info down their throats or insulting them.  (oops, now I've read your apology Love. You made good points)
 
I believe that it is quite possible that James has fibromyalgia, cause unknown, as in many other cases. It is also quite possible that James has lyme which is causing fibro symptoms.  It is also possible that James has Lyme disease that has caused him to have fibromyalgia itself.
 
While researching all these things, viruses, etc, it's pretty clear that so many things are connected and that those conncections are all still unknown.
 
No one here knows for sure, no one.
 
 Even if his lyme test comes back positive, we cannot know that he does not actually have Fibro until he is treated for lyme and those symptoms subside. 
 
Yes, many people have been misdiagnosed w/ MS, fibro, CFS, Autism, Alzheimers, etc etc ETC, when they really have lyme, and the lyme is causing their symptoms.  But as much as some folks here want lyme to be the root cause of everything, these cases do not prove that.
 
I'm a Lymebrain for sure, so it's hard to say what I'm trying to say. So, another example.  Someone who has been diagnosed w/ MS may have been misdiagnosed. And often some good Lyme testing will show that they, in fact, have Lyme disease. And so abx treatment (or whatever works) relieves the symptoms of MS that they were suffering.
 
OR, as Amy questions, is it possible that her lyme has actually caused her to have MS, not just the symptoms?  It is suspected that viruses or other diseases cause MS, ALS, CFS, Fibro, etc etc.  And so lyme may be one of them because it eventually suppresses the immune system. But so do some viruses.  So if Lyme has caused Amy to contract MS, then abx may not relieve all of her symptoms.
 
Trying to shove lyme down someone's throat or 'accusing' someone of really having Lyme is totally unproductive.  If someone is here, reading the lyme board or participating, obviously they have some questions for which they are seeking answers.
 
I hope that they can understand that we have learned that Lyme causes SO many symptoms and SO many misdiagnoses that we want to shout it at the Mountaintop -- because, clearly we want to help more people who can be helped!
 
Still, while we are at it, we need to offer help and advice that is requested, without insulting anyone or causing strife on this board, on which we depend so much.  The only way we can find some answers is to work together and discuss stuff together.
 
One final example, maybe James will catch my drift.  I have suffered 'major recurrent depression' (Dr's words, not mine, I'd just call it bouts of depression) on and off since early in my married life (married at 19).   Was this caused by a tick born infection I contracted at 19, or was the root cause a bad marraige and a bad husband?  Would my adult life have been the same had I not been bit?  Or did the bite just make me more suspectible to depression?
 
I am also quite mentally ill now.  Was this caused by a bite 30 something years ago? Or was it caused by my bite 2 year ago? Or was it caused by my bad marraige?  Or am I just mentally ill?
 
The answer is WHO KNOWS, NOBODY KNOWS.  I've got to deal w/ it as best I can. And if abx turn me into my former pre-19 self, well then, we'll know the answer.  Highly unlikely we'll ever know, but we sure as shoot won't ever know if we just argue and stomp our foot down, claiming to have all the answers.
 
So James' mission must be this: Continue his search for lyme (and ok to keep asking questions).  And if he has a positive test, will his treatment cure his fibro symptoms?  Maybe it will, and maybe he will need fibro treatment as well.
 
And as others said above, we already know the negative lyme tests do not PROVE anything. So that's what's so difficult. So let's try to help each other here, as best we can. 
 
I like the way that Dr. S puts it. Something like this, paraphrased, 'Of those who have 41 and  one species specific band, 97% will feel better with abx.  And of those who have 1 species specific band, over 50% will feel better w/ abx.'  Something like that....
 
This is not the first time someone has been insulted here because someone here is accusing them of really having Lyme.  So I think we can do a little better.
 
ALL of us have a LOT of questions w/ no answers, and there seems to be a LOT of connections between these illnesses and viruses, etc etc.  We really need to do the best we can to listen to each other and respect each other, so we can go to our Drs, educated,  and try to prod them in the direction of the Truth, if there is such a thing.
 


Amy C
Regular Member


Date Joined Jan 2009
Total Posts : 45
   Posted 7/26/2009 1:59 PM (GMT -6)   
I think it's bc there are drugs now for Fibro so it's all about the money for the doctors! Plus there is no long history of controversay so doctors aren't afraid of it like Lyme.
--------------------
One BIG Lyme family!! Possibly congential...
~I tested CDC positive 10/08
~My mom Igenex positive 11/08
~My brother Igenex positive 4/09
~My 2 boys some positive & IND bands, clinical diagnosis 3/09
~My youngest has Aspergers too (a form of autism)


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17381
   Posted 7/26/2009 1:59 PM (GMT -6)   
That's okay, Lovelabs.  It's just that we with fibro hear that all of the time.  I like to prove things that I say and that's why I posted the links with the learned doctors responding. 
 
Both illnesses are horrible but, if I had to choose which illness I had to live with, I'd choose fibromyalgia....hands down!  I truly pray that doctors will unlock a cure for both of these illnesses. 
 
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


Amy C
Regular Member


Date Joined Jan 2009
Total Posts : 45
   Posted 7/26/2009 2:44 PM (GMT -6)   
Well said +Lyme :)
--------------------
One BIG Lyme family!! Possibly congential...
~I tested CDC positive 10/08
~My mom Igenex positive 11/08
~My brother Igenex positive 4/09
~My 2 boys some positive & IND bands, clinical diagnosis 3/09
~My youngest has Aspergers too (a form of autism)


stutterbug
Regular Member


Date Joined Jul 2007
Total Posts : 478
   Posted 7/26/2009 3:01 PM (GMT -6)   
JAMES:::: I have that ear itching that you are talking about. It is terrible at times. What i have found is that I have neuropathy of one of my facial nerves that runs into the ear. If i lightly stroke the corner of my mouth, that ear goes CRAZY. There is one spot down deep in my ear canal that responds to this. It is an itch that is so intense. It can't be ignored. I use q-tips and I make a disgusting "pig" noise in my throat that sometimes helps!    fortunately, my husband finds the sound endearing! You may have some neuropathy that is causing that itch.

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4396
   Posted 7/26/2009 6:44 PM (GMT -6)   
Not all doctors recognized Fibromyalgia as a real disease until research started showing some testable differences between those diagnosed with Fibro and those with other chronic pain conditions. Fibro up-regulates substance-P in the CNS, thus making the person more likely to interpret sensations as painful.

From my own research when I was diagnosed (falsely, in my case - my symptoms went away with magnesium supplementation), I discovered there are some other conditions that can cause symptoms that mimic Fibromyalgia quite well, including hypothyroid, magnesium deficiency, chronic EBV, and others (including Lyme Disease).

It is also known that Fibro and Chronic Fatigue Syndrome share some things in common, and may in fact be two ends of a spectrum, in which Fibro has more pain than fatigue, and CFS has more fatigue than pain - not saying the pain or the fatigue are less or more severe, just saying that the dominant symptoms of CFS are more fatigue-related, and the dominant symptoms of Fibro are more pain-related.

It is true that Fibro never faced the politicization or the dichotomy between patients, doctors, politicians, and national organizations that Lyme has dealt with. I believe this is one big reason for the difference in how Disability, for example, or other physicians perceive people with the two different disorders (Fibro vs. Lyme).

I have read that some physicians who treat Fibromyalgia find that about 90% of their Fibro patients test positive for Lyme Disease. Does this mean they actually have Lyme instead of Fibro? Not necessarily. But if they improve on long-term antibiotics, then it is likely either they were initially misdiagnosed or the Lyme was causing them to experience Fibromyalgia (as a secondary condition or mimicing the symptoms of Fibro).

Take care,
-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, chronic Lymphopenia, intermittant pancytopenia, chronic malabsorption/malnutrition, etc.; G-Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, IV Ceftazidime, Heparin (to flush PICC line), Claritin, Domperidone, Colloidal Silver (used topically), probiotics, homeopathy.


Nicky D
Regular Member


Date Joined Jun 2009
Total Posts : 361
   Posted 7/27/2009 8:47 AM (GMT -6)   
Hmm.

Well, I have pretty much no knowledge, but I did have a question I was nervous to ask, but now I think I will...

I've heard that Lyme can be mis-diagnosed as MS/Lupus etc. So, to me, it would make sense that the reverse could happen. Since Lyme is a clinical diagnosis, and since the symptoms to other illnesses are so similar, is it possible to be diagnosed with Lyme when you really have MS?

I also wanted to say, that I feel this board is much better than other boards for not critizing people for asking questions. And when misunderstanding occur, everyone is very adult about it.

On other boards, I think this would have turned into a hissy-fit, when all it was was a misunderstanding/poor choice of words. If only the IDSA would respond to ILADs as calmly and attentively as the people here!

Lyme disease is a very sensitive subject, because many people struggle so much to get treatment. But I think it's important to still ask questions, and keep an open mind. There is still so much we don't know, and since most doctors aren't willing to help, we have to ask the questions ourselves.

Asking questions is the best way to learn (IMO), and no-one should ever be penalized for that. (Of course, it is important to try to make sure that the phrasing of questions is not impolite/insulting, but everyone seems to be pretty good about that)
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