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» LymeNet Flash » Questions and Discussion » Medical Questions » Wow..have you ever checked out a "Fibro" forum?

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Author Topic: Wow..have you ever checked out a "Fibro" forum?
bcb1200
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I was checking out the "Fibromyalgia" forums on healingwell.com

Wow...everyone there has lyme. I am trying to point them in the right direction, yet they all seem to be content with their Fibro diagnosis.

Sigh.

--------------------
Bite date ?
2/10 symptoms began
5/10 dx'd, after 3 months numerous test and doctors

IgM Igenex +/CDC +
+ 23/25, 30, 31, 34, 41, 83/93

Currently on:

Currently at around 80% +/- most days.

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Razzle
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Don't bother with HW's Fibro forum - they've banned members from their forum for bringing up Lyme.

One local LLND says 95% of all her "Fibro" patients test positive for Lyme.

--------------------
-Razzle
Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs.

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randibear
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i was on a fibro board and got trashed. boy, i left in a hurry. talk about some close minded people.

oh well, let's see how they're doing in a couple of years.

--------------------
do not look back when the only course is forward

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Roger1700
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most are probably covered by ins, SS or Medicaid for fibro..
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Lymetoo
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quote:
Originally posted by bcb1200:
I am trying to point them in the right direction, yet they all seem to be content with their Fibro diagnosis.


-

oh yes .. been there, done that

You may be able to avoid being thrown off if you just go on there a few times a week and place "just enough doubt" in their minds so that a few will listen and check out the possibility of a Lyme diagnosis.

[bow] Good for you for trying!!!!

--------------------
--Lymetutu--
Opinions, not medical advice!

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2roads
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There was something in our local newspaper about the billions of dollars being spent in this country treating people with chronic pain.

Although it referenced injury and cancer as some causality, the thread of the article seemed to be life-long, weekly or monthly flair ups of pain.

Gee, wonder if it couldn't be because of a bacterial/parasitic infection, maybe a, like Lyme or something. [loco]
[cussing] [cussing] [cussing]

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JunkYardWily
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i agree.

ive never understood the "well if im told its fibro i guess its fibro"

why do people just blindly accept drs opinions? even if their pain isnt from lyme it could be from another infection or enviormental factors.

i still question my dx and ive seen improvment in my symptoms.

--------------------
sick since 9-09
igg, 18,23,41 reactive
igm, 41 reactive

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tickbiter
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wow checked out a couple threads over there and saw a couple of your posts bcb and it is terrible and very saddening that they might be stuck on their fibro diagnosis. I would be very careful with your tone your not going to get through to people with anything other than calm collected facts. Many of them need to understand why the testing for lyme is incomplete, Good work though!
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philly78
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I just visited the board. Wow is all I can say. Many of these folks definitely need to pursue the lyme route!

Some are so young! I can't believe they would just accept this diagnosis.

--------------------
When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal.

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ardraneala
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there was a fibro person at the outpatient therapy thing i went to at the hospital. wish i could talk to her now.

--------------------
Listen. That's all we ask.

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Robin123
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As a person "diagnosed" with fibrocitis in 1983, and then fibromyalgia, in 1990, I've had a lot of experience with large and small fibro support groups over the years.

After I found out I had Lyme, I went into fibro groups, all fired up to let them know, and they threw me out. Gee, wonder why. Crusader me.

I went in and told them what their disease really was. "Oh no, my doctor says I have fibromyalgia." End of story. They all trust their doctors.

So now, I'm still at it, but I take a different tack - I say MY fibromyalgia turned out to be Lyme disease, a bacterial infection acquired from a known tick bite, and I can date every symptom.

That way, those who are interested approach me about it, and that's a minority of those there.

I try to explain it to them quickly - the bacteria go into the brain within 12 hours, inflame the nerves and spinal cord, they can also corkscrew into tissues anywhere and inflame that way too.

I am actually having cordial conversations on a couple sites right now.

And it's best not to attack their doctors - just explain that some of us have learned some more about what's going on.

So many of them have never seen a tick bite. They often think what I'm saying sounds like science fiction. Some could be congenital cases.

But some people have been rescued. Like one mom immediately made an appt with Dr J for her sick child and got off the fibro board!!

Oh my gosh, so much money to be made off of fibro patients who go to every doctor imaginable and who are given all the various pharmaceutical drugs. I think close to half a million bucks was spent on me before I found out, if you count the surgeries, the rehab stays...sigh.

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Tennessee1
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My mom has had fibromyalgia for 20 years. A couple of years ago (before I got Lyme or knew the first thing about Lyme) she told me that whenever she gets an infection, like a UTI, and is put on antibiotics, her fibromyalgia gets better.

Since I contracted Lyme disease, my mom tells me all the time that my Lyme symptoms remind her of her fibro symptoms. I've suggested that she get tested for Lyme, but so far she's not interested.

Do you guys think all cases of fibromyalgia are really Lyme disease? Or just some cases of fibromyalgia are really Lyme disease?

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Robin123
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Good question, Tennessee - I've been wondering that myself. Anyone know if it can be anything else? So far, I think fibro is Lyme.

Re testing, keep in mind that people can test negative - 27 reasons for testing negative are listed at www.canlyme.com/seronegreasons.html - that's why you gotta be careful with that angle -

I actually had some folks on fibro boards test for Lyme, come back negative, and quit on me, when the reality is that 60-70% of us are going to test positive, with some of the sickest not testing positive until after some treatment.

So I would tend to go the symptom description route, as in look how many fibro symptoms sound like Lyme symptoms.

In the film "Under Our Skin," so many people mention they had a fibromyalgia diagnosis first. I mention that a lot and try to get people with fibro to see the film.

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t9im
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Tennessee1:

I'm not sure all fibromyalgia cases are Lyme, BUT I do feel most are tick related. I think some may also be related to bartonella type organisms.

I spoke with the mother of a 14 year old last week who has scheduled an appt. with a LLMD. This after Dr. Z (our infamous pediatric rheumatologist how testified against Dr. J) indicated he has fibromalgia. The child has been seeing him for over a year.

--------------------
Tim

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Garden
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I think fibro can have multiple "real" causes. I don't think fibrmyalgia is one of them. It is a list of symptoms, not a true underlying cause, in my opinion.

Fibro can be hidden celiac in some cases. Celiac can cause all the same neuro symptoms as Lyme, believe it or not, and I know severla women with fibro who became well after going gluten-free (symptoms did not go away at all until the 3 or 6 month point).

I heard a radio ad the other day for a study someone was doing on "Juvenile Fibromyalgia". Made me ill to think of all the kids and teens stuck with this hopeless diagnosis.

--------------------
Garden

"Fibromylagia" for 8+ years
Pos IgeneX WB per both Igenex and CDC
Pos Neuroscience MyLymeImmuneID
Started tx for Lyme in March 2011

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Dekrator48
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I have been on a FM/CFS board for at least 4 years.

It has been difficult at times, but through perseverence, good explanations, links, etc, many people there have discovered they have lyme.

Now they are also here on lymenet. [Smile]

I still get rude comments from a couple people, but I always ignore them.

Once I had to email the moderators to explain to them that lyme was really a bacterial spirochete that can cause FM/CFS, along with the common coinfections, and that it is necessary to make sure people have this information so they don't remain sick forever.

Things got easier after that. They cracked down on rude people which has helped.

The way Lyme is explained has been the most important thing in getting people to pay attention.

Most people are then able to understand that it doesn't matter what you call it, the important part is finding the causative infectious agents.

Since they have a diagnosis with no known cause and the Dr is not going to look for it, they have no chance of getting better unless they start opening their minds to the infectious possibilities.

There are still plenty of sick people on that board so I will continue with my attempts at education.

--------------------
The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.

"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11

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2roads
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Yea, I remember when the fibro word came out and I think it was frowned around the medical community, atl east until they realized the Pharmaceutical Companies gave them a way to charge for an office visit.

How sad.

We have a few billboards up with a person on them looking miserable and the words say something like "Maybe it's Lupus".
I wish I could scratch a line thorough it like the "Eat more Chicken" commercials and write the words 'Lyme Disease'.

Rrrrrrrrrrr

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sparkle7
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It's sad peope are so closed minded about "diagnoses". Fibro doesn't have a test to prove it. I think alot of things other than Lyme can have those same symptoms. It's not always Lyme.

I had CFS back in the 80's, then I had a Fibro diagnoses in the 90's - then a Lyme diagnosis. I don't think my problem all along was Lyme. None of the abx helped me.

In the end, the anti-parasite treatment was the turning point for me. I'm not completely well but the anti-parasite treatment is what has really helped me.

I didn't look at the link to the Fibro board but I think people just don't want to consider that all they have learned may be incorrect. It's a threat to their belief system. This is probably why they lash out at people suggesting it may be Lyme.

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Elaine G
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I'm on a CEBV forum. So far, 7 people got tested for Lyme and are positive. Some are now on this forum. Others will not spend the money for a LLMD or proper tick testing, yet, they are so ill.

Then you get the jerk who quotes the Mayo Clinic.
[bonk] telling me that Lyme can be cured with 14 days of Doxy.

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bcb1200
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Yes...now someone started a threat titled "I have Fibro..>NOT LYME DISEASE"

they are very content to treat symptoms rather than root cause for the rest of their life.

--------------------
Bite date ?
2/10 symptoms began
5/10 dx'd, after 3 months numerous test and doctors

IgM Igenex +/CDC +
+ 23/25, 30, 31, 34, 41, 83/93

Currently on:

Currently at around 80% +/- most days.

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randibear
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it was the vindictive trashing that i didn't like. mention lyme and you are really going to be attacked.

i said I'm outtie, and left. sorry, i have no sympathy for people like that. cruel and personal comments attacking a different opinion seem to be the norm on fibro boards. oh, not all, but most.

i have a friend who must be on 20 different meds and she brags, actually brags, about "oh i have fibro...blah, blah, blah" and i tried to talk to her but "well you're going to the wrong doctors, nobody has lyme, etc. etc.". i gave up on her.

some of those people are dumber than a stump...the least they can do is to acknowledge that lyme might be a possibility but oh no, we're consider "nuts"...

don't waste your time on those boards.

--------------------
do not look back when the only course is forward

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JeniferM
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Al commented "Fibromyalgia is not a disease it's a group of symptoms"

I wonder how many people actually realize that? It didn't even occur to me that doctors would say "you have ABC" and that would just mean a grouping of certain symptoms. I would think "oh, okay, how do we treat that?" and then go with whatever the doctor said not realizing we're not really curing something, just covering up the symptoms. It's only recently that I've learned the difference.

--------------------
IgM: [18++,31+++,34++,41++,83-93+] [39 IND]
IgG: [41 IND]
Positive according to IGeneX. Negative according to CDC. Negative for co-infections.
Currently treating for Lyme, Bartonella, Babesia

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Jamers
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Their Mistake then! How ignorant can you be?

I remember my doctor running all test then diagnosing me with anxiety, arthritis, and possibly fibro! I said Hell NO! Its something else, I am sick! Some people enjoy being sick for the attention is brings, very sad.

I agree with Jenifer though, that I learned the hard way that doctors were only treating my symptoms and not really getting me well.

--------------------
Diagnosed Pos. Lyme Nov. 17, 2010, Igx.
Pos. Babesia Duncani March 2011, Igx.
Clinical diagnosis for Bartonella

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philly78
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Well bcb, you may get that one person who reads the posts and decides to pursue treatment. And that would be great if it helped.

There is one poster on there who states she lives in tick paradise and just had a tick on her last week! Par for the course she stated. But nope! She doesn't have lyme!

*Shaking my head*

--------------------
When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal.

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momindeep
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I went over there and checked out the forum site and cannot believe what I am reading! I would not accept a garbage dx like that lying down.

There are people over there complaining of their intense foot pain...nausea...insomnia. Too bad, it is such a sad sad thing to be barking up the wrong tree...perhaps could even cost them their life.

Yes, not everything is Lyme...but then what is it?

Doctors told me that my daughter had CFS...I asked, syndrome?...what do you mean by that? doctor says, we say syndrome because we are not certain what causes it...I ask, then you really don't know what is wrong with her then?...doctor says, yes we do, she has CFS...and I say, but you just said you don't know what causes that...so you don't really know what is wrong with her! Blah bla...

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Lauralyme
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There sure is alot of people with anxiety over there

--------------------
Fall down seven times, get up eight
~Japanese proverb

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Robin123
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I wonder what would happen if a whole bunch of us went over there and started big conversations about the symptoms possibly being Lyme, because ours turned out to be Lyme - ?

I think we'd have to be ready with some good links for people to read, as well -

Good for you, Dekrator, for hanging in there and educating people - it's not easy, when they don't want to look -

I knew instantly, when the nurse told me, that she was right - I was actively looking for the answer - we all have different mindsets -

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BoxerMom
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quote:
Originally posted by bcb1200:
Yes...now someone started a threat titled "I have Fibro..>NOT LYME DISEASE"


Hey bcb! Did you know you said "threat?" HA! It probably is a threat! Watch your back on that Fibro forum!!!

--------------------
 - Must...find...BRAIN!!!

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Lemon-Lyme
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As mentioned already, Fibromyalgia isn't exactly a disease. It's just a made-up term by doctors to describe various symptoms, such as muscle pain, various pains, fatigue, etc. I find it bizarre why anyone would be happy to stick to that diagnosis.

There could be various causes, varying from Lyme, other tick diseases, thyroid, auto-immune, neurological disorders, etc.

Perhaps it's a situation where they are simply happy to have an official 'diagnosis', that they don't want to look for the cause of the problem? And I'm not saying they aren't suffering with many symptoms, but simply making up a term to describe symptoms without any actual cause is... well, just a made-up term.

I'd think anyone with such a diagnosis would want to rule out all possible causes, and not just take medication to treat symptoms.

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2roads
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Who knows, maybe there's a bunch of addicts on that site that wish to receive their pain meds unconditionally, and to find an answer means saying goodbye to their "little friends".

Sadly, my Mom was one of those types and she would've sued me before I got in the middle of her drugs and her man, the great doc. She threatened it anyway.

Happy 4th family.

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Jamers
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Since I have Bartonella and it is really messing with my state of mind...Im really thinking of going over there and raising some hell! Just to get things stirred up, LOL!

Yes, this is what Bartonella does to me, Im normally very sweet!

--------------------
Diagnosed Pos. Lyme Nov. 17, 2010, Igx.
Pos. Babesia Duncani March 2011, Igx.
Clinical diagnosis for Bartonella

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Spindleshanks
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My PCP dx me with fibro because he couldn't think of anything else. That was after he sent me to one of the best rheumatologist in town that said I definitely did NOT have fibro. I was begging for pain medicine and he said because of my age he would not give me anything for fear of addiction! Yet he would be put me on a seizure medication for FIBRO. He even told me maybe I should see another doctor. He didn't want to treat my pain just for his own comfort. How wrong is that! I actually was at work when one of my patients told me it sounded like I had lyme. I went to the lyme md and sure enough! He told me that maybe I should remind my PCP that it is against the law to not adequately provided proper pain management in California. To make things even worse when I told him I thought it could be lyme he ran the Western Blot but only ran the IgG which was negative. Guess which one was positive when the lyme doctor did it the IgM! When I went back to the Primary to give an update he said he was sorry he missed that but still doesnt think that is why I have all of the problems I do and wanted to do more tests. What an idiot! The sad thing is that his wife is a pediatrician and they have a large family that lives out in the country hopefully none of their children get lyme or them because it will be hopeless.
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JeniferM
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What we should all do is each of us create a blog or website of our own showing these symptoms and pointing to Lyme disease. Then direct everyone back here to LymeNet. That would overwhelm the search engine rankings and hopefully redirect some of those wayward people to think of Lyme as an option.

I don't think you're going to sway many people at the Fibro forums as they've already made up their minds for the most part and you'll most likely get more posts about how it's not Lyme instead of the other way around.

--------------------
IgM: [18++,31+++,34++,41++,83-93+] [39 IND]
IgG: [41 IND]
Positive according to IGeneX. Negative according to CDC. Negative for co-infections.
Currently treating for Lyme, Bartonella, Babesia

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James1979
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You guys got me curious enough to look there.

I agree, it's very sad. One post was saying how fibro is a real disease because it is accepted by the CDC, the AMA, the NIH, etc. Yeah, like we can trust those organizations (sarcasm).

That's like saying that a stubbed toe is a real disease, and everyone who stubs their toe is a victim of STS (stubbed-toe syndrome).

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Lymetoo
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quote:
Originally posted by Robin123:

I knew instantly, when the nurse told me, that she was right - I was actively looking for the answer - we all have different mindsets -

-

I had been ill for 42 yrs .. dxd with Fibromyalgia for 20 when I found out I had Lyme. Thank goodness I found out!! And like you, Robin, I was all for it and all over it!

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Lymetoo
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quote:
Originally posted by James1979:

That's like saying that a stubbed toe is a real disease, and everyone who stubs their toe is a victim of STS (stubbed-toe syndrome).

-

[lol] [lol]

You and BoxerMom made me laugh!! [Big Grin]

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James1979
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What do you guys think about this idea:
Someone could go on that forum and ask: "Is it common to see Bell's Palsy at the start of fibromyalgia?" or "Do you think it's strange that I had a strange rash on my arm just before my fibro symptoms started?'

I'd be very curious if anyone there would mention anything about Lyme. I'd also be curious if multiple members there would say: "Yes, it's common to have palsy or rashes at the onset of fibro."

I would do this little experiment myself, but for some reason it bothers my conscience. [Smile] Maybe it's dishonest or something, I don't know.

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susank
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Do the dates correlate when folks started being Dx'ed with fibro (and CFS) and when LD first started getting noticed? Wasn't it around the same time? Wonder what states have the most Fibro/CFS cases?

--------------------
Pos.Bb culture 2012
Labcorp - no bands ever
Igenex - Neg. 4 times
With overall bands:
IGM 18,28,41,66 IND: 23-25,34,39
IGG 41,58 IND: 39
Bart H IGG 40

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Lymetoo
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Probably does, susan. I was diagnosed in 1980 with FM .. about 5 yrs after Lyme was "discovered"... but I'm sure my doctors had no clue about Lyme back then.

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Robin123
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Well, I just took the plunge and registered at healingwell and made my first post, a very explanatory one, because I think people there are going to need a lot of explanation for what's really on. We'll see whether the fireworks coincide with the 4th or not!

Thx, Lymetoo - I think some of us just know when the explanation is given to us - too long, too much mystery, too too much to take. I got the fibrocitis label in 1983 and then the fibromyalgia one in 1990.

James, ha - stubbed-toe-syndrome! I had MedicalMystery syndrome myself. And WhyDidTakingFlowerPollenSuddenlyHelpMe syndrome...I don't think they're clear enough over there yet to tell you what's going on - so let's give 'em some educating time -

And, go Jamers!

And the rest of us, let's go take a field trip together over there to the site!

Keep in mind that not everyone is ready to listen, but a few might be, and that's ok - we'll help them. For the rest, at least it's some info.

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karenl
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I think it is not only the fibro problem. On other boards it is the same. The MS group wants to have MS and the porph group is the worst.

They write they have crawling under the skin like worms but they get angry when you only mention parasites.
They want their genetic porph and are not interested in getting better by trying to treat it. They are brought up as a porph.

Also lyme people are hard to convince - how long had Gael to write us that we should eat antiparasitic herbs? Many years till some of us understood the idea.

Most people get used to a disease und do not want to give it up. It is their identity.
I am sure many people on lymenet have no lyme
but some other combination of different bugs.

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Robin123
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Karen, you bring up a good point about those of us with other Lyme presentations considering going on these other forums - I still say info is needed to help anyone understand what they may be dealing with.

And yes, there are a lot of bugs we could have - this gets discussed a lot at a large support group I attend - good for us all to have an open mind re new info -

So far, not bad at all - am in fibro and Lyme forums and going ok -

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Lauralyme
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That's true Karen
I tried to convince someone with MS that it could be lyme
and with equal conviction she was trying to convince me that I have MS and not lyme!

--------------------
Fall down seven times, get up eight
~Japanese proverb

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James1979
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Karen - but with Lyme I believe it's commonly accepted now that we're not just talking about borrelia burgordferi anymore, but the word also covers any other coinfections, including parasites. Even Dr B says in his guidelines that it should be called Lyme Disease Complex, and doesn't only mean bb. Also Dr H says the name should be changed to Multiple Chronic Infectious Disease Syndrome.
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karenl
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James,

you are right it is Lyme Disease Complex.
This is why I am in the group. We learn so much here.
Lyme is not just getting IV abx but we have to be open minded.
If all the co infections are gone the bb would not be such a huge problem.

I agree most people on lymenet are willing to learn every day. I was not even able to convince a MS, porph ... that they need to remove mold.

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TerryK
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SusanK asks:
Do the dates correlate when folks started being Dx'ed with fibro (and CFS) and when LD first started getting noticed? Wasn't it around the same time?

No. I believe Fibromyalgia has been around for centuries. It is a common consequence of infection and other conditons that were not known about.

Ever heard of the vapors or hysteria. Some of the symptoms per wiki:

http://en.wikipedia.org/wiki/Female_hysteria
Hysteria was widely discussed in the medical literature of the nineteenth century. Women considered to be suffering from it exhibited a wide array of symptoms including faintness, nervousness, insomnia, fluid retention, heaviness in abdomen, muscle spasm, shortness of breath, irritability, loss of appetite for food or sex, and "a tendency to cause trouble".[1]

____________________________________________________

http://www.fmaware.org/News29c4a.html?page=NewsArticle&id=7289

The Broken Column symbolizes fibromyalgia. The rheumatologist Manuel Martinez-Lavin investigated the painting of 1944 and suggested that Frida Kahlo had suffered from fibromyalgia.

Vulnerable Victim
The painting shows a woman with all symptoms of fibromyalgia. Most characteristic are dozens of nails, which are driven into the skin all over the body. They symbolize the everlasting tormenting widespread pain. White straps keep the body from falling apart, showing how vulnerable, weak and perhaps imprisoned the person in the painting feels. The woman stands in completely desolate surroundings; a symbol for loneliness and lack of empathy that may be experienced by people with fibromyalgia. Tears are on her cheeks and the air is hopelessly gray. The opened body shows a broken column instead of a spine. It symbolizes the fear that the spine will fracture and the body will collapse.

__________________________________________________

Personally I don't think most ppl want to have a painful debilitating illness where no hope is offered for improvement besides pallative care.

Over the years, what I've noticed is that many with a FMS or CFS or MS diagnosis trust in the medical profession as a whole. Alsom it's very hard to be defiant against your doctor with family, friends and insurance companies insisting that your doctor knows what he/she is talking about. As we all know, the internet is full of whackos. LOL

I saw 3 doctors who all said I did not have lyme. One of them was a doctor that I had been seeing for 20 years and I trusted her.

It's a good thing for lymenet and other places like it because after looking at the studies and reading at lymenet I decided I needed to be evaluated by an LLMD. Still can't convince most ppl in my family who are ill with the same symptoms to take lyme seriously. They have/had fibromyalgia and CFS diagnosis.

Terry

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TerryK
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Not to take this off topic but I found this very interesting regarding fibromyalgia and biblical times.

http://chronicfatigue.about.com/od/fibromyalgia/p/historyfm.htm

Following is Jobs vivid description of his physical anguish:

I, too, have been assigned months of futility, long and weary nights of misery. When I go to bed, I think, `When will it be morning?' But the night drags on, and I toss till dawnAnd now my heart is broken. Depression haunts my days. My weary nights are filled with pain as though something were relentlessly gnawing at my bones. (Job 7:3-4; 30:16-17 - NLT)


Florence Nightingale - from the same link

Another well-known person who reported fibromyalgia-like symptoms was Florence Nightingale, an English army nurse during the Crimean War (1854-1856) who was a pioneer in the International Red Cross Movement.

Nightingale became ill while working on the front lines and never really recovered. She was virtually bedridden much of the rest of her life with pain and fatigue resembling fibromyalgia until her death in 1910.

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Robin123
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Well, my post at healingwell got locked today by a moderator, because it's the fibro forum, and while they're glad I found out what was causing my fibromyalgia - ie, Lyme, they "know what is causing theirs" - ie, fibro, with no explanation given.

Frankly, I think fibro-identified people are going to suffer the rest of their lives since they seem unwilling to examine causation.

[ 07-04-2011, 05:47 AM: Message edited by: Robin123 ]

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map1131
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Robin that will teach you not to go making trouble. Hold out your hand so we can slap your hand for being a bad girl.

They know your type over there. [loco]

Watch them find a cure for fibro first and we'll be jumping ship. Don't really care what the animals name is.....I just want it OUT of my way.

Pam

--------------------
"Never, never, never, never, never give up" Winston Churchill

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klutzo
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I am a former fibro support group leader for ten years, and I may be able to shed a little light on why some fibro people resist the possibility of Lyme, or maybe I should only speak for myself.

I resisted even considering Lyme for 12 years after it was first suggested, while it ravaged my body, and was obviously progressive, when fibro supposedly isn't.

When I first started hearing some fibro patients say they'd been dx'd with Lyme, I thought the local Rheumy's ARNP who was making the dx of Lyme for these people had gone round the bend from working too hard.

Why? Because it did not seem logical to me. Back then nobody knew that mosquitos and biting flies could carry Lyme. It seemed to me that male hunters and farmers, and kids who live in the country would get Lyme, not middle-aged women, many of whom lived in city high rises.

Also, nobody could explain to me why 90% of those dx'd with fibro were female. Again, it seemed hunters, farmers, etc., who are mostly male, should be the majority of victims of ticks. I still don't understand the reason why estrogen makes us more susceptible, which was the reason I was eventually given.

Nobody told me about nymph ticks or their small size, or that they inject you with something so you could not feel their bite. So, I felt certain that if I had been bitten, I would have known, and would have found a visibly swollen tick on my body.

What finally changed my mind was the start of Lyme rages. Formerly, I had no temper at all, zilch. That scared the crap out of me, esp. when one of my former support group members who had been dx'd with Lyme told me it was part of late-stage Lyme.

I was tested with QRIBb twice, which is what this ARNP was using back then, both times positive. The second generation of that test is now paid for by Medicare, so I feel it is pretty good.

After getting up to herxing dose on Samento, a bullseye rash appeared, 3 times in a row, in the exact same place on my body; the place I'd read was the most common place for people to get bitten by a tick. I'd been told that could sometimes happen during tx, as the bugs tried to escape the tx. My PCP doc confirmed that "it looks like a tick bite". I was finally convinced.

Also, many of these people may not be thinking in terms of logic like I was, but in terms of fear. Fibro patients are told it will not affect their lifespan. This is a lie, of course, but they do not know that. There is a study done on fibro patients showing that using biomarkers, the average patient has a body 25 yrs. older than her chronological age.

Most everyone who really knows anything about Lyme knows it can kill by end organ damage. I am in Stage IV right now, slowly dying of what it did to my pancreas. They would much rather believe they have "just Fibro", rather than a potential killer, esp. if they've been investing in the fibro dx for years, because then they will feel guilty if they end up like me. I sure feel plenty guilty for not listening sooner, since my resistance will lead to my own early death.

I hope this may give some of you insight for the potential approaches you might want to take when addressing these folks. I usually just say I want to tell them my story, and never say that I think any of them have Lyme. I just want to plant one little seed of doubt......and make them feel they should check it out, so as not to regret it later.

I have posted on an ME/CFS board and a general alternative health board, both of which are totally open to Lyme info, so it may help to know that not all of them are as closed-minded as the one you mention above.

klutzo

- Got sick Jan. 1986
- Dx'd in hospital with MS
- when MS tests came back negative, dx'd with depression (it figures)
- Dx'd with Fibro Feb. 1986
- Dx'd with Lyme 2004, by which time it had made me so Th2 immune dominant that I was allergic to all ABX that kill it (I had skin tests to confrim the allergies), hence I took Samento, feeling it was the best of the alternatives.

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katiebobatie
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this post is great!!!

i was also diagnosed with fibro, but refused to accept it as a diagnosis.

i knew it was just a fancy word for "we don't know what's causing your problems."

i'm trying to convince a very sweet woman who has lupus, fibromyalgia, and MS to at least watch "under our skin" ... she was tested for lyme a while ago, but the doctor said it was negative.

i really believe she probably has lyme, but i want her to come to the conculsion on her own.

i know with me, everyone had a different idea of what was wrong with me, and everyone thought they were right.

i have a feeling these fibro patients on these boards have been pulled in a million directions, and just can't handle dealing with it right now.

it took me a while to look into lyme, because i read about how impossible it was to get a positive test, and i accepted when doctors told me i couldn't have it.

you don't realize how unreliable doctors are until you get sick. you assume they have your best intrest at heart [Frown]

i hope these fibro patients see the light one day... i think they have just been through a lot, and feel like they can't handle any more diagnoses...

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Robin123
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Haha, map - li'l ole pesky me...most fibromites seem to be looking for palliative treatments - anything to reduce symptoms -

Thx for your post, Klutzo - very enlightening, and very serious - fibro is not just a label, but a cover-up of a progressive illness - are you able to get medical help with your pancreas situation?

Yes, I know some forums are more open-minded, and I happen to be in one where I can actually chat about it and we have discussions. Not sure anyone is convinced that their fibro is Lyme yet, but at least we can talk about the details. I do say that this is my story, that MY fibro turned out to be Lyme.

Am wondering, since you've been there with the resistance part of it, whether you would have any interest in attempting to talk with them there?

I saw that there's several moderators there. One let me pass, with a little discussion, and the next one locked the post, saying "this is the fibro board."

Katie - your comment about thinking doctors have your best interest at heart - I went back to a rheum I had seen early on, to see what he would say when I reported it was Lyme. He didn't want to hear. I think most rheums do not have our best interest at heart.

So any more ideas about how we talk with people if they feel they can't handle one more diagnosis idea?

As Klutzo said, a developing symptom caught her attention - so did mine, to the point where I was actively asking online about them, and I was scared - I was dealing with lipomas and major, major chemical sensitivity by that point - maybe for many, the awareness isn't going to happen till much later?

The good news about finding out is we have the chance to address many of the problems, although it isn't easy and we have to search around for answers.

I found the answer to the lipomas on the dercums forum I was in, although i don't have dercums - but they were doing research and told me to drink noni juice and take grapeseed extract capsules, which completely stop lipomas! And it looks like I'm going to be able to detox with FIR.

I mention these symptoms here, because if fibro people go on and on not knowing about the possibility of Lyme, everyone is going to get pretty sick.

I tried to find as many of the old fibro friends as I could when I got diagnosed. The ones I was able to find knew by then that they had Lyme, and some had co-infections.

It's so bizarre to look back in hindsight at those fibro support groups, because now I can see the symptoms that belonged to each of the infections.

Back then, the doctors themselves didn't know what they were looking at. It wasn't until the internet that we got to all find out.

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katiebobatie
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i think it just takes time for it to click for some people...

i met a man whose daughter is bedridden from cfs and fibro... his wife was one of the first people diagnosed with fibro, and wrote a book about it...

he tried to tell me i probably had fibro and cfs instead of lyme. yet i can walk again with anti-biotics, and his daughter is laying in bed getting worse [Frown] her husband has to carry her to the bathroom everyday [Frown]

i really resent most doctors. they would rather let patients die than give them a proper lyme diagnosis [Frown] it's outrageous!!!

anyway, i think the best way to get through to these fibro people is just by sharing personal experiences, without suggesting they have lyme.

i'd mention how i went years thinking i just had fibro, but once i started treating for lyme, i noticed a major improvement!

when i come across these people, i just act like they do have the diagnosis they claim to have, but that there may be something bigger causing their illnesses.

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klutzo
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Robin123,
Yes, I take prescription enteric coated enzymes, which cost $900/month. The sales rep at my GI doc's office gives them to me free, otherwise I would already be dead, since there is no way we can afford that, and we are not quite poor enough to qualify for help with meds. I also have to eat very small meals and a very low fat diet. The problem of my pancreas not making any enzymes, known as EPI for short, still reduces lifespan by 20%, and at my age, that doesn't leave much. I am suffering so much from my other symptoms that I'm cool with it.

As an aside here, a 25 yr. retrospective study of CFS found pancreatic insufficiency to be the #3 cause of death in CFS patients. (The Cheney study, not the Hyde study, I think). In Melissa Kaplan's excellent and exhaustive list of Lyme symptoms, she lists the pancreas not making enzymes anymore as a potential Lyme symptom. I don't believe in coincidence.

There are several other problems that could beat my pancreas to the finish line, and I hope my damaged heart combined with my dominant sympathetic nervous sytem will win the race, since my husband would go bankrupt if I die slowly. A massive stroke would be my preference.

As to going to that resistant forum, no matter how sick I am, I must do all the paperwork for my husband's corporation, and that plus caring for a chronically ill cat, and taking care of the house is already more than I can do without making myself worse.

I rarely even get here to LymeNet anymore. It is getting so difficult that twice during the past month, I've locked myself in the bathroom and bawled my eyes out for over an hour because I don't have the courage to kill myself. So, I think I will have to pass on incurring anymore stress than I already have and leave the battle to those who are relatively healthier.

- - - - - - - - - - - - - - -- - - - - - --

katiebobatie,
I really feel for you, knowing someone who is letting a child get sicker. I feel so helpless watching people get worse like I did.

I have a friend whose brother has Lyme, and as long as he takes his ABX, he works full time and even runs in marathons! Yet, if he misses just 3 days of ABX, he can't even go to work. Nobody will ever be able to convince him again that he has CFS!


Blessings to all,


klutzo

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NEMOM
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I also was given the Fibro dx before realizing it was Lyme.

I believe there was a section in the book "Cure Unknown" where the author describes how the term CFS first came about. If I remember correctly it was during a period back in the '80's when the CDC was denying that LD could incorporate the symptoms commonly associated with CFS & FMS. I don't remember if it was during a formal hearing or LD conference but the argument was "No-those symptoms are related to a new disease called CFS and are not LD at all."

Wish I still had the book to refer back to it....

All we can do for those who have other dx's is plant the seed of possible LD and let them do with it what they will. If we as individuals are able to help at least one person and they in turn are able to help another-we will all eventually get the word out.

However as a very proactice person with my own health and my children's health-it is very frustrating.

I've been trying for almost four years to get a friend to open her mind to the possibilty that her dd's health issues are much deeper than what her Doc's say but she has never been receptive to my opinion. Oddly enough she found a new forum where all the parents where saying the same thing that I've been trying to tell her and now all of a sudden she may be starting to "get" it. (She has something other than LD.)

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katiebobatie
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klutzo,

i don't know the girl personally... just her dad.

he is convinced she got these syndromes from chemical exposure.

i asked if she is improving, but he made it clear she's getting worse and worse.

i moved away and will never see the man again, but i hope something i said struck a cord, and he might decide to look into the possibility of lyme.

his daughter sounds just like me before i started anti-biotics.

i worry that many of these fibro and cfs victims will die before discovering what is really wrong with them [Frown]

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Marz
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My diagnosis for diagnostic code for insurance from my PCP is fibromyalgia. She know I have lyme and treats for lyme.

You are supposed to have 11 of 18 tender points in order to have this phony diagnosis and I have less than 11. PCP didn't test for these but LLMD did.

I would have preferred CFS which I do have.

It seems so dishonest, but this is how they have to protect themselves from being questioned by insurance.

It seems bizarre that insurance prefer a diagnosis for a disease that they don't know the cause rather than lyme, a disease for which the cause is known!

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linky123
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I also got the trash-can diagnosis of fibromyalgia, given elavil for sleep. The usual routine.

I lived with it for 22 years. I'd rather know the truth any day.

I always wondered what was causing my sx and why I crashed in a hotel room while travelling because I just couldn't go any further.

I heard an llmd being interviewed on the radio, but he was very careful how he described the sx etc. He called it chronic fatigue and said he had a very good success rate at treating it.

Only when I went to see him about my 'fibomyalgia' did he raise the possibility of lyme and sent off the test to Igenix.

He had to be careful. He never mentioned lyme once in the interview because he knew he would be crucified for it.

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'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28

Posts: 2607 | From Hooterville | Registered: Apr 2009  |  IP: Logged | Report this post to a Moderator
   

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