View Full Version : it was lyme all along

07-16-2013, 11:41 PM
I encourage all of you to test for it with an llmd! I was told I had fibro but it was lyme and co-infections. I experienced many of what you have. Save yourself trouble and get tested!

07-16-2013, 11:58 PM
It is that easy to get tested for Lyme disease ? I had read before that they really did not have a worthwhile test to be sure if a person actually had Lyme disease or not. I knew a person that thought he had it, but he said they could not tell for sure, and there was also a possibility that it was some kind of a venereal disease, I forget which kind he said it might be (or maybe he didn't say)
How do they tell if it is Lyme or fibro ?
I live in the South,and there are sure a lot of ticks here, so I think that it could also be a possibility in my case.

07-17-2013, 08:53 AM
Hi there,

I just joined the forum today and wanted to hook up with folks with fibro who thought they may have Lymes. I know there are some good tests in the USA now days, and Canada but the jury's out on how effective they are. Are you satisfied with your results and follow up advice. Also, which test did you have.


07-17-2013, 12:21 PM
I was tested for Lyme's years ago. There is a special blood test that they use to find out if you have it. Mine was negative.

07-19-2013, 05:08 PM
I was tested for Lyme's years ago. There is a special blood test that they use to find out if you have it. Mine was negative.

Did you get an ELISA test or Western Blot done? Even one band means you're positive. A lot of people don't test positive because their bodies have quit fighting the illness, so no antibodies are being produced.

Igenex and other reputable labs have more sensitive testing.

Another test is the CD-57. If it is under 100, I'd be suspicious of Lyme. 60 and under, definitely chronic lyme!

I was handed a diagnosed of fibro, but I know inflammation is not caused by "overactive nerves" or some other early 19th century logic.

Please reconsider getting tested, so you don't have to suffer/get worse.

07-19-2013, 05:09 PM
A Western Blot and a CD-57, measuring your immune system. If it's depressed, borrelia is the likely cause.

07-19-2013, 05:12 PM
Syphilis can appear on a Western Blot, because they are the same shape as Lyme (spiral-like). He could be testing false positive for Syphilis, when it's actually lyme.

Please reach out to your local Lyme association to find an appropriate dr. Lyme is a CLINICAL DIAGNOSIS. Blood tests can be unreliable. GET A SECOND OPINION BEFORE COMMITTING YOUR LIFE TO FIBRO. I've also noticed many having new health problems crop up after fibro. Don't think that's a coincidence.

Be sure to check for co-infections, as well.

07-20-2013, 10:27 PM
I had the ELISA & Western blot done several times over the years and they were always negative. A lot of people who I new got diagnosised with Lyme's, but not me.

07-23-2013, 02:24 AM
That is good advice and valuable information, but you haven't told us how you dealt with Lyme after you have been diagnosed? Is everything ok now? What treatment did you follow?

07-24-2013, 02:14 PM
I'm dealing with as a chronic illness now, much like fibro or CFS would appear. I'm going to have to be in treatment for a long time, hope it works to put the bacterial load down so my body can reach a remissive state.

I also have co-infections that complicate treatment that need their own separate treatment.

07-24-2013, 03:37 PM
So many of the symptoms are alike! I do wish they had a better test for Lyme's AND for Fibr. I have been tested for Lyme's several times and they have always come back inconclusive. Some doctors will treat it anyway, but if you get a doctor who doesn't, the effects of Lyme's would be life long.

07-24-2013, 03:40 PM
Do you think too many doctors are just tossing alot of people into the Fibr. category because they don't have experience in diagnosing other illnesses or because they just don't know for sure? I get so frustrated at being told things are in my head, when I know what I am feeling and just because you can't pinpoint it, you blame my brain? I wish we had a Dr House who could diagnose everyone! lol

07-25-2013, 10:18 AM
There is a reason many with Lyme always test negative over and over. Your body has stopped making antibodies and has stopped "fighting" so to speak. Lyme LOVES hanging out in tissue, and you'll only see it in blood when it is being "reborn". (Yuck).

In my opinion, fibromyalgia (something with "no apparent cause") as a lone entity would not cause someone to be in a wheelchair, to be bedbound, etc. I disagree that it would be progressive, or even a real disease on its' own. It's just a constellation of symptoms. I have fibromyalgia due to Lyme being the culprit. I've noticed many saying they had "fibro" before an AI showed up. I think Lyme can trigger those in some with the right genetic make-up. Fibro would NOT cause heart palpitations or mitral valve prolapse, for one, like many claim or IBS. Lots of medical conditions pop up around, before, or after a diagnosed of fibro.

Yes, I feel it is a lazy diagnosis and there has been an EXPLOSION of fibromyalgia it seems over the last 10-20 years and they do not even want to LOOK at bacteria or parasites as the root. I blame the doctors most of all, because one is supposed to trust their insight. You're right, they're not experienced with treating Lyme because they feel it isn't a long-standing illness. I have literally been harassed by some fibromites because they claim I wished I had fibro and not Lyme because it is "easily treatable". WRONG. People suffer and die all the time from it being untreated, and they blame it on some idiopathic cause ("heart attack", "meningitis", etc). As you said, many are told that the pain is psychosomatic and are just handed Cymbalta and shoved out the door.

From my understanding, when Lyme is IND that means "weakly positive". One band showing up means positive, it doesn't have to be the full five or more. Anyone can surely test positive, and be asymptomatic, but if they DO exhibit symptoms, then all signs should point to Lyme as the cause. GET COPIES OF YOUR BLOODWORK. BE YOUR OWN ADVOCATE.

Trust me, a year ago, I had no idea about any of this. The politics, the lack of knowledge of treatment, etc were never made apparent to me. I would have told you you were crazy and that it was a virus causing my fibro/CFS.

But now since I know my cause, I can do something about it. The road ahead is rough and unknown. I would have not have believed any of it either if someone told me the ramifications of what Lyme causes and does. I believed I did indeed have just "fibro", because if you key any symptom into and tack fibro at the end, people will say "Yes, it's a part of it!". I wonder how many have tick-borne infection and don't recognize it? I want to tell all these people to be checked by someone well-versed in Lyme unlike many ID docs who'd just laugh you out of the office. I've tried informing others because they shouldn't suffer like I did, they deserve a full life... but you can only lead a horse to water, as they say.

I urge everyone in this thread to at least email to speak to an LLMD. It may be out-of-pocket MOST times, but it would keep you from seeing doctor to doctor year after year, and put you on the right track to wellness.

07-29-2013, 03:39 PM
Hi Cherryjelly,

Since reading threads re Lymes on this website I have found a company that can test me for this, despite having the condition for 14 years. Before, I I think this wasn't possible? Now I have found a company in Holland that claims to be able to test for Lymes and secondary microbial infections and today I visited my GP and am arranging for the test (my GP must supply blood samples).

I have been disappointed so many times and got my hopes up for different explanations for my symptoms that I daren't believe this could finally provide a breakthrough for me.

Good luck to any confused folk out there!

I am sending my blood next Wednesday and will keep all posted as to the results. I hope and chant (I am an SGI Buddhist) that I will finally glean some sense making info.

Thanks Cherryjelly for encouraging me while I follow this up. I have always known, via intuition It wasn't Multiple-Sclerosis and have plausible evidence that it could be Lymes (a long story). My symptoms are much more in line with CFS or one of the various chronic fatigue conditions, though I have never filt properly aligned with this, either!

So many specialists have not really listened to my history of symptomology and this has been / is a very isolating and crazy making process. It has kind of caused a distance between my family and myself, caused a divorce, ended my much loved job and lost me most of my friends so there's a lot resting on this test!

Somehow, I will raise the money and nervously await an outcome.

Many thanks for this post :)

07-30-2013, 11:44 AM
I'm not sure what tests my husband has had, but thank you for the information on the new and improved ones he could request. Those of us who live in high-risk areas should be up to date on this so we know what to ask for. We tend to go along with our doctors instead of insisting on what we want. thank you again