Suspected Fibro Dx

[CarlaB]

Carla

My hubby got all 3 of the lyme vaccines as did our dr..........He's the one who gave them to him as both are birders and in the woods all the time. So it was released at one time.

Judy

Yes, it was, then it was taken off the market because of people getting sick from it.

Matilda, I don't know. I don't know that there's any way to tell. I think like celiac testing, false negatives are more of a problem than false positives. It tests for antibodies just like celiac tests do.

I just want to add ... I do not think everyone with Fibro has Lyme, but I do think everyone with Fibro has something ... all they treat someone with a Fibro diagnosis for is the symptoms. I think a good portion of people with Fibro do have Lyme, as Rachel already stated.

Fibro is the same kind of diagnosis as IBS, which we talk about here so often.

[Judyin Philly]

Several years back they were trying to develop a vaccine for Lyme Disease that never got released to the public (apparently people were getting Lyme from it).

QUOTE (Judyin Philly @ Oct 16 2007, 07:49 PM)

Carla

My hubby got all 3 of the lyme vaccines as did our dr..........He's the one who gave them to him as both are birders and in the woods all the time. So it was released at one time.

Judy

CARLA-------"Yes, it was, then it was taken off the market because of people getting sick from it".

BUT CARLA ............that is not what you said .............you said it wasn't released....I was just trying to let you know it was --Judy

MAYBE WE CAN GET BACK TO TRY TO HELP TIFFANY HERE WITH THE FIBRO ISSUE.

[tarnalberry]

I'm not of the belief that fibro is a 'wastebasket' dx. If it is, then depression should be too, and I don't think that is either. That's not to say that there aren't misdiagnoses, but I do think it's real, given the biologic bases they've found.

[Judyin Philly]

YEP MAYBE THAT'S WHY I FEEL LIKE 'i'VE BEEN THROWN IN A 'WASTE BASKET' WHEN I HAVE A FIBRO FLARE.

PLEASE DON'T TRY TO TELL ME I'M NOT FEELING FIBRO WHEN I WAS DX'D 10 YEARS AGO........AND NOW GETTING CONTROL OF THOSE SYMPTOMS.............i DON'T CARE WHAT "THEY CALL IT" .....................IT HURTS.

KEEP DIGGING TIFFANY................YOU'LL FIND YOUR ANSWERS AND WE'LL TRY TO HELP YOU ALONG THE WAY.

JUDY

[CarlaB]

BUT CARLA ............that is not what you said .............you said it wasn't released....I was just trying to let you know it was --Judy

Sorry, I mis-spoke. Lots of brain fog here ... sorry.

[Rachel--24]

I'm not of the belief that fibro is a 'wastebasket' dx. If it is, then depression should be too, and I don't think that is either. That's not to say that there aren't misdiagnoses, but I do think it's real, given the biologic bases they've found.

I do believe that these conditions are real....real in the sense that they have specific symptoms and definately very real to the person who's suffering from it. IBS is real.....something is truelly irritating the bowels and causing symptoms. Fibro and CFS are real in the same way.

I also believe that if we really dig for the answers we dont have to live with IBS, CFS, or Fibro.

How many people on this board were dx'd with IBS before they discovered they actually have Celiac?? On this board the numbers would be high.

On the Lyme board the numbers are high as well....most people were dx'd with Fibro or CFS (even IBS) prior to discovering they had Lyme.

I do think based on everything I've researched that there *is* a cause in every case....the cause is not always Lyme...nor is it always easily identified.

I'm certainly not saying that the symptoms arent real....or that they arent specific. In the last 5 years there have been times where I could have very clearly been diagnosed with Fibro (meeting all the criteria for diagnosis)...these days I would not have enough of the trigger points to make the diagnosis.

[Rachel--24]

Sorry to be interrupting your thread, Tiffany. I've been really interested in the explanations of the Lyme testing, but I was wondering if anyone knows what percentage of people without symptoms get positive results for Lyme disease from a lab with the most sensitive tests. Rachel said some doctors report 90% positive results for Lyme disease when they look for it, in those with FM or Autism. It would put it in context to know what proportion of the general, asymtomatic population test positive. Does anyone know if that's been done?

Thanks,

Matilda

I dont know if any actual studies have been done. There is a large portion of the population who will test positive for Lyme without having symptoms....this is known. They are not false positives....people dont become symptomatic unless their immune system is unable to handle the infection.

Basically a person can live with Lyme for many years (possibly even their whole life) without symptoms....or with other seemingly unrelated issues (autoimmune disease, depression, allergies, etc.). Many of the kids born with Lyme have mothers who were asymptomatic....but when tested they are positive for the infection. Obviously, the asymptomatic mother has an immune system which is coping with the infection....keeping it under control. The child may have more difficulties....being exposed so early on and then with other toxic insults added in....vaccines being one of them.

So yes....plenty of people will test positive for the bacteria without having symtpoms...but usually when the scales tip and a person is dealing with chronic symptoms...the immune system isnt coping as well as it once was.

Also, Lyme can impair a persons ability to detox efficiently...for some people it may be worse than others (probably having alot to do with genetics). This leads to problems with other toxins we're exposed to. Chronic Lyme isnt ever *just* about Lyme....by the time a person is suffering symptoms the immune system is weakened by several things....and not just the lyme infection. Over time the more the immune system has to deal with....the less its able to keep the Lyme under control.

I dont have any clue when I was actually exposed to Lyme (or how many times).....it could have been there since I was a child...when my family camped nearly every weekend during the summers.

Tiffany,

Sorry for hijacking your thread. If anyone is having questions re: Lyme feel free to post in the lyme disease thread...or the OMG thread...or start a new thread for furthur discussion.

Judy, Sorry if you are offended by the posts.

I wouldnt post this info. if I didnt believe it to be accurate and if I werent hoping it might be helpful to Tiffany or anyone else who happens to read this thread.

[mamaw]

I guess I should rewrite why I said at times I call this my wastebasket syndrome!!! Years ago that is what doctors in my area called it!!! I used to get so mad at them because I knew I had real pain not in my head pain...but some just think we imagine this horrible pain.

For me it is very real. And for sure stress is a culprit for me....

A doctor friend of mine who when in college had a professor who told them when a patient complains of aches & pains & no specific dx is known they classified it as a " wastebasket syndrome . In other words --- they just have no idea why this happens to some....

I have done better since going gluten-free but it has not totally disappeared from my body.I have been taking 50,000 vit D once a week & I actually think it is helping.

blessings

mamaw

[Rachel--24]

A doctor friend of mine who when in college had a professor who told them when a patient complains of aches & pains & no specific dx is known they classified it as a " wastebasket syndrome . In other words --- they just have no idea why this happens to some....

This is my understanding of the term "wastebasket condition/syndrome" as well. Its a cluster of symptoms with no known cause. The symptoms are commonly associated with either IBS, Fibro. or CFS.

I have seen the term used many times in discussions having to do with these syndromes.

[tarnalberry]

but there are biological findings consistent with fibro patients (that are not found in the 'normal' population), which - to the best of my knowledge - is not the case for conditions like IBS. there are some things in the world that we don't know the real root cause of - like gravity - that we don't suspect are any less foundational because of it.

[Fiddle-Faddle]

but there are biological findings consistent with fibro patients (that are not found in the 'normal' population), which - to the best of my knowledge - is not the case for conditions like IBS. there are some things in the world that we don't know the real root cause of - like gravity - that we don't suspect are any less foundational because of it.

But have they determined that those biological findings are not found in the celiac population?

Even most of the fibro "experts" are totally unaware of any connection with gluten.

I suspect that fibro is kind of like a neurological equivalent to refractory sprue, and in the most severe cases, the damage is too severe to completely heal even after going gluten-free.

[Ursa Major]

After suffering with awful pain from the age of three, fatigue and just feeling lousy, I was diagnosed with fibromyalgia in 2000. Until then I had just tried ignoring the pain (I didn't know not everybody experienced pain, I thought it was normal). When it got so bad I stopped being able to function, I finally gave in and took painkillers.

I had awful backpain from the age of seven, severe joint pain (no arthritis, proven by x-rays) in all my joints, crippling migraines, IBS (almost all people with fibro have IBS, which I find interesting), and terrible muscle pain. Exercise didn't help but rather made it worse every time. As a child I would do the things the other kids did, because I believed they all felt the way I did, and if they could do it, so could I. I always paid for doing those things with awful pain. The doctors dismissed me. They declared I had a low pain threshold, or it was all in my head.

In 2001 I started taking codeine 24 hours a day (usually one 50mg slow release pill every 12 hours, sometimes two at night to be able to sleep), and took those for four years. The codeine just took the edge off the pain, barely enough to sort of function. It didn't help with the fatigue, of course.

I tried all kinds of supplements, both herbals and vitamins over the years, that were supposed to help with fibro. All of them made it worse, not better. I had no idea why they helped others, but not me.

Two years ago, after being very ill all for six months, I stopped eating gluten. After two weeks of being gluten-free, I also eliminated all lectin foods (all grains, legumes, including soy and peanuts, all dairy, I had already eliminated the nightshades, and eggs).

When I did that, I found the pain was almost gone, and I didn't need any painkillers any more. But then, after three months, it came back. I had the terrible muscle pains again. When Rachel posted a link on salicylates, I couldn't believe I could have more intolerances. In fact, I didn't feel like investigating, because I didn't want to eliminate any more foods!

But when I did eliminate foods high in salicylates, the pain went away again. So, then I thought maybe it was either lectins or salicylates, surely it couldn't be both! So, I tried those foods, one at a time.

Rice gave me diarrhea, a terrible stomach ache, awful back pain, joint pain and made my knees and ankles buckle on the stairs. It also put me out of my misery by making me sleep for 16 hours straight.

Eggs did roughly the same to me. Peanuts and eggs also gave me heartburn and sour burps, as did legumes.

Potatoes give me diarrhea and joint pain. Tomatoes give me migraines and peppers give me huge pus filled blisters all over my face as well as joint pain.

So there went the lectins.

Next I tried the salicylates (and nightshades are also a high salicylate food, plus they contain oxalates). One Saturday afternoon I took some Aspirin (the worst offender), and ate some almonds, grapes, an orange, a mint and some honey. By evening I wasn't feeling too bad and felt rather sheepish.

But when I woke up the next day I felt like I was on fire! The pain was so intense I felt like screaming. Needless to say, I was back on the codeine for a couple of days.

The foods highest in salicylates are herbs, spices (all herbal teas other than chamomile are bad, as is black tea), honey, mint, most oils (olive oil is especially bad) all fruit except for pears and bananas and many vegetables. And Aspirin, of course.

Meaning, that I am very limited in what I can eat now. I still have some pain, as I think there is permanent damage from being poisoned all those years. But usually I am fine without any painkillers.

The fatigue was due to hypothyroidism and Addison's disease. It is somewhat better now, but I still have low energy, I am working on it. My doctor is no help, she is clueless.

Here are a couple of links to websites to check out:

Open Original Shared Link

Open Original Shared Link

They have helped me tremendously.

For anybody who thinks that guaifenesin will help, it has been proven to be nonsense. It is claimed that salicylates block the guaifenesin from working. I took it faithfully for many months, of course eliminating all salicylates and bread (you were supposed to eliminate bread for a month before reintroducing it in limited amounts), and I felt much better a few years ago.

When I added bread back in I was sick again, and quit, thinking it wasn't working and not worth the money. Now I know that eliminating bread and salicylates were what helped, not the guaifenesin at all. Because I am now eliminating those foods, without taking it, with the same results.

When I was tested for adrenal problems, it was found I had low aldosterone levels. That can be a cause of food intolerances. Hypothyroidism can cause food intolerances as well.

Mind you, I tried eating some foods again and was fine for a while, but now the pain is creeping up on me again. I will have to go back to eating just meat, vegetables and pears to feel better and have to forget about some of those gluten-free goodies I've been trying (with rice and potato flour and stuff like that).

I haven't been tested for Lyme. No doctor will test me, because I grew up in Germany, and they claim that they don't have Lyme disease there. Which isn't true at all, they just have a different name for it, and more and more people there are discovering they have it. I might have to try pursuing it in the future.

[CarlaB]

I haven't been tested for Lyme. No doctor will test me, because I grew up in Germany, and they claim that they don't have Lyme disease there. Which isn't true at all, they just have a different name for it, and more and more people there are discovering they have it. I might have to try pursuing it in the future.

If I remember correctly, there's guy from Germany who posts on Lymenet ... one from Finland, too ... and several from the UK. It's over there, but equally not recognized as here.

[tarnalberry]

No, lectins don't cause me an increase in pain.

Pain isn't my major symptom - fatigue is the larger problem.

Yes, I have the tender points.

No, this isn't something that 'went away' after going gluten free - it came on four years *AFTER* remaining gluten free.

I've had fewer colds/flus/infectious diseases recently, and have better fought off what I've gotten now than I have. This has been improving for the past decade, really.

[CarlaB]

Tiffany, I take NT Factor for fatigue. It works at the cellular level and has been clinically proven to help with CFS (not that you have that) patients. You can only buy the full-strength version through a doctor.

[Rachel--24]

there are some things in the world that we don't know the real root cause of - like gravity - that we don't suspect are any less foundational because of it.

This is true....but that doesnt seem to be the case with Fibro....because in most cases a root cause *can* be identified and treated. Of course this is only in those who are actually *looking* for a root cause.

If those with Fibro identify the root cause of the symptoms and then treat it....those fibro symptoms tend to diminish. Because of that I dont believe Fibro is like gravity...Fibro symptoms can go away.

Gravity has *always* existed....Fibro has not been around forever. It does exist now....its becoming more and more prevelant...just like CFS and Autism. I dont believe these conditions exist without reason.

I have no reason to question gravity but Fibro is something I'm not willing to say just "happens".

I know of a 16 year old girl totally disabled by Fibromyalgia. She cant attend classes like everyone else (because she cant climb the stairs), she cant play sports, she cant enjoy being a teenager because she has Fibro.

She has not been tested for Lyme because the "specialists" at Stanford told her parents that she doesnt have it. This girl doesnt get any better...who knows if she will ever be able to enjoy her life without pain. Its very sad.

[Mtndog]

Gravity has *always* existed....Fibro has not been around forever. It does exist now....its becoming more and more prevelant...just like CFS and Autism. I dont believe these conditions exist without reason.

I have no reason to question gravity but Fibro is something I'm not willing to say just "happens".

I know of a 16 year old girl totally disabled by Fibromyalgia. She cant attend classes like everyone else (because she cant climb the stairs), she cant play sports, she cant enjoy being a teenager because she has Fibro.

She has not been tested for Lyme because the "specialists" at Stanford told her parents that she doesnt have it. This girl doesnt get any better...who knows if she will ever be able to enjoy her life without pain. Its very sad.

IMHO, I think things like fibro have been around for a long time- they just weren't given a name. For example, my father VERY CLEARLY has dyslexia but was just told he was "slow" or "stupid". Same with autism- everything was just clumped under "mental retardation.

I do not think that fibro is a "wastebasket diagnosis". I think not only are the symptoms very real, but I believe Tiffany is right that in fibro most patients have lower levels of serotonin. This is more likely to occur in women because women have naturally lower levels of serotinin. This may also be why SSRI's help not only depression but IBS, CFS and FMS. Depression is definitely not a wastebasket diagnosis (even if you feel like a wastebasket when you have it )

So, if lower levels of serotonin are found in FMS patients, couldn't that be the root cause?

Of course, there may be other contributing factors. For some people, like me, it's Lyme. For others it's oxalates. Or nightshades. I think that the body is too complex, and our environment and the modern diet as well, for there to always be only one root cause.

Tiffany- I've read that some people get relief from fibromyalgia using guafenisin (in cough medications like Robitussin) and I know that there are good groups out there about this. Here's a link:Open Original Shared Link

if you scroll down to the bottom under Washington, there are several doctors who are in your area.

[holiday16]

Tiffany,

Just a follow up to my earlier post. I did a search for Fibro. and interferon and found this study:

Open Original Shared Link

Nice to know I wasn't imagining that the natural interferon helps ) I have not been very good with taking it these last few days and I'm amazed at how much more tired and achy I am in the mornings. I attributed my increased energy to my meds, but I"m finding that taking this was helping more than I realized. Helped my allergies too so that was a nice side bonus.

I hope you get some answers today.

General question if anyone sees it. If you do massage for fibro. how often do you go? I've been doing that and it's helped a ton, but it seems I have to go fairly often to maintain the benefit from it.

[Fiddle-Faddle]

So, if lower levels of serotonin are found in FMS patients, couldn't that be the root cause?

I think something is CAUSING the lower serotonin levels in the first place.

A syndrome is a cluster of symptoms, CAUSED by either a disease, or poisoning, or infection, or....(fill in root cause here) I think lower levels of serotonin are another symptom (and a very important one), but not the root cause.

[tarnalberry]

I think something is CAUSING the lower serotonin levels in the first place.

A syndrome is a cluster of symptoms, CAUSED by either a disease, or poisoning, or infection, or....(fill in root cause here) I think lower levels of serotonin are another symptom (and a very important one), but not the root cause.

overactivation of the sympathetic nervous system - as is common due to the stressors of our daily life that aren't the stressors our ancient ancestors had to face - I've read to be though of as one possible reason for lower levels of serotonin. (I'm not sure of the full chemical link from increased cortisol levels, but iirc, it starts there.) goodness knows I've got that sort of stress in spades.

[Judyin Philly]

TIFFANY

I WAS JUST COMING ON TO SEE HOW YOUR DR APT TODAY WENT.

I FORGET WHERE YOU ARE.........MAYBE YOUR 3 HRS EARLIER AND HAVE AN AFTERNOON APT

PLEASE LET US KNOW WHAT THE DR SAID.

I'M SO ANXIOUS TO HEAR.

JUDY

WOOPS..........sympathetic nervous system HOW IS IT DIFFERENT FROM AUTONOMIC DYSFUNCTION..?

ARE THESE TOTALLY DIFFERENT?

MY PT FOR UI TOLD ME THAT I HAD AUTONOMIC DYSFUNCTION????????? I'VE TRIED TO GET INFO AND KNOW RACHEL TOLD ABOUT IT ONCE BUT I'M STILL NOT GETTING IT.

WONDER IF FIBRO CAN BE PART OF THAT DYSFUNCTION

OY.......SO MANY QUESTIONS.........WE NEED SOME ANSWERS

[Ursa Major]

Tiffany- I've read that some people get relief from fibromyalgia using guafenisin (in cough medications like Robitussin) and I know that there are good groups out there about this. Here's a link:Open Original Shared Link

if you scroll down to the bottom under Washington, there are several doctors who are in your area.

A little farther up I said this about guaifenesin:

For anybody who thinks that guaifenesin will help, it has been proven to be nonsense. It is claimed that salicylates block the guaifenesin from working. I took it faithfully for many months, of course eliminating all salicylates and bread (you were supposed to eliminate bread for a month before reintroducing it in limited amounts), and I felt much better a few years ago.

When I added bread back in I was sick again, and quit, thinking it wasn't working and not worth the money. Now I know that eliminating bread and salicylates were what helped, not the guaifenesin at all. Because I am now eliminating those foods, without taking it, with the same results.

There have been serious studies done, with hundreds of patients. Half of them took guaifenesin for a whole year, following the protocol completely, and the other half wasn't. There was no difference in outcome. It was given a fair chance, and failed.

[mftnchn]

Hi, just a quick note, as there is a lot of good information here. I do think your pain could have more than one cause. I think the fibro diagnosis is solid, but like many diagnoses, it is mostly based on a collection of symptoms.

I am another one with years of debilitating fatigue and joint/muscle pain (17 years or so before diagnosis). I tested positive to lyme (3 co-infections) on the Bowen labs test. A rheumatologist in Portland (who teaches about lyme at the medical school and is the "area expert") made fun of this test and diagnosis (even showed me medical information showing this test was faulty), but said the only thing he wondered about was the flu like symptoms I got after every weekly shot of bicillin when I saw him for a follow up after my other doctor started me on antibiotics.

My doctor tried many combos of antibiotics and I was treated for 8 months before I started to improve, in fact got worse due to all the herxing. But the herx helped us be patient as it was suggestive of confirmation of lyme. After a year and a half, I was almost symptom free, and only have had recurrences when I go off antibiotics. The diagnosis was only confirmed after my response to treatment. I am so very grateful I didn't listen to the rheumatologist/lyme expert!!!!

My point is that doctors can sincerely think they are right and that you don't have lyme and that they have eliminated that in their differential diagnosis. That's a prevailing issue in the Northwest.

I am not trying to convince you that you have lyme, only encourage you to consider this possibilty--hoping that you will find some relief from all you are dealing with.

Tiffany, I can understand your hesitancy to take antibiotics. There are several herbal protocols that seem to be working quite well for people.

[marciab]

but there are biological findings consistent with fibro patients (that are not found in the 'normal' population), which - to the best of my knowledge - is not the case for conditions like IBS.

Tiffany,

I was wondering if these are the biological findings you are talking about ?

I only copied in the part of the article about fibro and tartaric acid. I have to look up the other acids still ...

Open Original Shared Link

Yeast/Candida

Following on from the previous paragraphs above about gut microflora disturbances, we'll now look at the possible role of yeast, specifically Candida, in ASD's. Dr. Shaw of The Great Plains Laboratory and formerly of the Centers for Disease Control has found that people suffering from ASD's (and other environmental illnesses) consistently have elevated levels of certain organic acids in their urine. He first noticed this in two autistic brothers who also had occasional muscle weakness and published his findings in the Journal Clinical Chemistry in 1995 (8).

Dr. Shaw was originally looking for metabolites characteristic of congenital errors of metabolism that are associated with muscle weakness. All of these metabolites showed normal levels, however, other more unusual substances were consistently elevated. One in particular, tartaric acid, stuck out. One autistic child had tartaric acid levels 600 times higher than the normal value.

Dr. Shaw also found that when he looked at the medical records of his other autistic patients, they too had this abnormality. Dr. Shaw noted that this substance is primarily produced by yeast.

The next logical step was to try a course of an anti-fungal agent to see if this improved symptoms. Dr. Shaw administered Nystatin, a common anti-fungal drug, to a 2 year old boy who was being evaluated for autism.

The boy had developed normally up until 18 months of age but had then been given repeated courses of antibiotics (repeatedly shown to increase intestinal yeast levels) for an ear infection and had subsequently developed behavioral problems.

After only a few days of Nystatin treatment the boys eye contact returned to normal and his tartaric acid level markedly decreased. It took 60 days for the tartaric acid level to return to normal however. Tartaric acid accounts for the muscle problems because it is a known muscle toxin.

It is also similar to malic acid which is an important part of the Krebs Cycle which in humans accounts for most of the energy production from food.

An important note with regards to tartaric acid being a muscle toxin is that high levels are also found in fibromyalgia patients.

JMHO. But, as far as this being a "wastebasket diagnosis", from what I've seen, patients are being diagnosed with FM or CFS without doctors giving a whole lot of thought to it nowadays. They've only got 8 minutes per patient, so this makes their jobs easier. And I have to wonder if those with FM who tested positive for low serotonin levels were depressed, while those with FM who aren't depressed were never tested. This would certainly make the study lean that way. I still have FM (trigger points, not constant pain like in the beginning ) and I'm not depressed. I sure was when all this started though .... but then again my doctors were idiots back then ...

[Mtndog]

A little farther up I said this about guaifenesin:

There have been serious studies done, with hundreds of patients. Half of them took guaifenesin for a whole year, following the protocol completely, and the other half wasn't. There was no difference in outcome. It was given a fair chance, and failed.

Ooops- sorry I missed that but that is good to know.

How are you feeling Tiffany? How was your doctor's appt?

was thinking back to when I was being evalauted by a rheumatologist who said no Lyme, no rheumatoid, no lupus, no fibromyalgia- it's arthritis and you will just have to deal- YIKES! Lyme is supposed to be a clinical diagnosis, as should fibro. Hope your doc treated you well!