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Posted 12/10/2012 10:04 PM (GMT 0)
I was diagnosed with fibromyalgia in february and I have been pretty miserable since then with life changing pain and fatigue. I went to see a LLMD in October and had Igenex labs done and I can post the results, but I am so confused. My LLMD says that I am positive for Lyme and to begin oral tx. I am negative for all coinfections. The labs show that I am positive for some bands and IND for some bands but I am not considered positive by the CDC or Igenex. My pain specialist basically yelled at me that he doesn't buy this chronic lyme thing. I definitely believe in it and I feel like why not try some treatment with antibiotics- I mean the pain doctor is giving me a boatload of powerful drugs to treat the fibro which are helping but not really putting this thing into remission. Any advice would be appreciated at this point. I don't know what to think or what the right answer is- all I know is I feel that my health is deteriorating and I am really suffering. Thanks all- this is such a great forum- i have been a stalker for a while!
Posted 12/10/2012 11:39 PM (GMT 0)
HI Shadow,
I'm so glad you decided to join us!! :-)
I too have been dxed with Fibro, it's an easy diagnosis to get when you have Lyme!

There are lots of doctors and specialists that don't believe in Lyme or chronic Lyme, but that doesn't mean that it's not there. There is so much research that has been done that it's pretty ridiculous that these 'professionals' yell at their patients when they feel threatened - not very professional in my book! I'm so very sorry that you had to endure that.

I'm really glad to hear that you have found a LLMD that is willing to treat you!! The blood tests are faulty - they only test for 4 or 5 of the strains (there's over 100 in the US, 300 in the world); the bacteria can turn off the immune response to it - which is how the test works, detecting the immune response; and the bacteria has a cell wall deficient form that it can go into any time it feels threatened, so it's no wonder that there are so many negative test results!

If you would like to compare your test results with a chart so that you can see which bands you have positive and which bands are specific to Lyme, here is a link to what I consider a great chart. You'll need to scroll down to the bottom of the page for the chart, although there is a lot of good information in the upper portions!
www.anapsid.org/cnd/diffdx/wb.html

So I would say, don't wait!! Start on your treatments so that you can get your life back!
Posted 12/11/2012 12:35 AM (GMT 0)
I know that feeling well, doctors Ive been to fight lyme every step of the way....just not in a helpful one!
Posted 12/11/2012 2:14 AM (GMT 0)
From everything I've read, Fibromyalgia is basically a diagnosis for pain when the Drs. can't figure out the reason. In other words, it's really a list of symptoms, not a diagnosis. Many Drs. don't believe in Lyme. My thought on it is always "live a day in my body and then tell me it doesn't exist, jack a**!", LOL! I'm sure you've probably felt the same way. Go w/ your gut instincts. The other thing is, if you have a Dr. that DOES think it's Lyme and is offering treatment, why not do it??? Like you said, the fibro. treatment isn't "healing"anything so what does it hurt to be treated for Lyme if the Dr. believes you are infected.
Posted 12/11/2012 3:01 AM (GMT 0)
Fibromyalgia is basically a non-diagnosis; it's simply a description of a symptom cluster. If they called it achy all over and tired-itis then no one would respect the diagnosis. There are many things that cause fibro, including lyme. If a fibro sufferer eventually comes up with the root cause of their pain (ie a real diagnosis) and gets properly treated the incurable fibro magically goes away...

There is some real irony to how readily physicians will stick a fibro label on a patient in an exclusively clinical diagnosis (there is no blood test) and bombard them with all kinds of potent medications, but when they hear lyme is diagnosed clinically and antibiotic treatment is being pursued they go crazy.
Posted 12/11/2012 4:32 AM (GMT 0)
I know very ironic- there is No blood test for fibro yet it is becoming a more accepted diagnosis, yet conventional docs argue that showing an "old" infection couldn't be causing any current problems, even though you are showing the exact symptom profile- it is absolutely maddening and insane. I don't understand why it is such a controversy= it is totally believable. Thanks for the responses!!
Posted 12/11/2012 5:02 AM (GMT 0)
Shadow, you are absolutely right. You use the exact same words to describe the situation that I do- "maddening and insane."

Spall is correct in that the Fibro diagnosis is simply a device to cloak the doctor's ignorance. It is simply a descriptive label for a subset of the patient's symptoms. When they summarily dismiss the obvious, then they are left with a list of conditions with unknown causes. The sad thing is that these intelligent people are often willfully ignorant.

Traveler gave good advice. You need a starting point to becoming well again!

Don
Posted 12/11/2012 2:45 PM (GMT 0)
HI shadow, it is so so frustrating but the best advice I can give you is to go with your gut feeling. Many many doctors dismissed my complaints and misdiagnosed me. But it is not normal to feel horrible. You have a positive lyme diagnosis so go with it IMO. Too many of us have similar situations and after strong lengthy treatment are feeling much better and living without pain and anxiety and other symptoms.

Remember, lyme is not your normal run-of-the-mill illness. It is very new and they are still researching the many facets of it. Hope today is a good day for you.

:)
Posted 12/11/2012 9:54 PM (GMT 0)
Spall! What a good point you made. They don't mind handing out heavy duty ADDICTIVE pain meds, but they won't give out abx?? Where is the logic in that??? Boy I hope I live to see the day when all of these idiots get their comeuppance!!
Anyway, Shadow, you have NOTHING to lose by just trying the protocol the LLMD gives you--other than pain and suffering, that is! It won't hurt your body to take abx for a month to at least test his theory. You are so lucky you found a doctor to help you. for so many, it's been their biggest battle. Good luck and you've found a great forum to get you through!
Posted 12/12/2012 12:07 AM (GMT 0)
You all are so great. Traveler- thanks so much for the chart. It was very helpful. I just want to post my Igenex results here in case anyone has comments.
Lyme IgM Western Blot
31-IND
39-IND
41-+
58-+

Lyme IgG WB
23-25- IND
31- +
34- IND
39- IND
41- ++

If anyone has info on whether this is a bad infections, recent, old, whatever. I think I am getting more comfortable and feeling better about starting antibiotics and I do feel really lucky to have a good doctor. I am really worried about feeling worse- the herxing I am hearing about. I can't imagine feeling much worse without being in bed most of the time. I have 3 kids- ages 11,8, & 7 so I have a busy household that I am desperately trying to keep up with. Also, given the things my dr. wanted me to do (start theralac probiotic and prilosec and get on an anti epileptic like trileptal for 7-10 days before starting antibx. so that has me set to start Omnicef Dec. 17th- should I just wait until after Christmas so I am not herxing on xmas eve with my family? thoughts? Thanks everyone for your thoughtful advice and caring!
Posted 12/12/2012 2:51 PM (GMT 0)
There is no way to tell whether a Lyme infection is "old" or "new" based on any Western Blot test...Lyme does not follow the usual rules when it comes to IgG vs. IgM. Most infections cause the body to initially make IgM antibodies, which then convert to IgG antibodies when the infection is old. However, with Lyme, the bacteria are constantly changing their outer surface and therefore the body has to constantly make new IgM antibodies.

So for example, someone who has had Lyme for 30+ years could light up like a Christmas tree on the IgM bands and be negative on most of the IgG (this is my situation), yet someone with Lyme who has only had it for a couple of months could be very positive on many bands on the IgG and negative on most or all of the IgM bands.

Most good LLMD's will treat if symptoms are present and either the IgG or the IgM show positive bands.

You have IND's on Lyme-specific bands. This means there was some response on the test, but not enough to call it a full positive for those bands. However, the only way to get even a partial response on a band is if the test detects something there at that band. Most LLMD's consider IND's to be positives.
Posted 12/12/2012 3:54 PM (GMT 0)
As for what to do to lessen the herxing - detox, detox, detox!! It's the toxins from these bacteria that drive our symptoms. (www.encognitive.com/node/5768)
Be careful to not put even more toxins in by eating a "clean" diet (very little processed foods & no highly processed foods), drink lots and lots (at least 64 ounces) of good water - you can add lemon juice if you aren't having any muscle spasms/cramps/twitching- to help alkalize the body. Be sure to dry skin brush daily as well. If you haven't read through our "New to Lyme?" thread yet, that's where you will find the suggestions for detoxing that we give. It's the 2nd post, about 1/2 way through it.

Be sure to always start each new item by itself, giving each new addition at least 4 days before starting something else new - this way you will know how well you handle each new thing and if something makes you herx - or worse you have an allergic reaction - you will know immediately what triggered it.

Slow and steady wins this race!
Posted 6/21/2013 10:12 PM (GMT 0)
Hey Shadow! Did you find out if you truly have Lyme even without positive CDC igenex test?
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