posted
Been lurking, reading through all the information here, getting well versed in Lyme - not really what I want to be doing though. This is the most active and helpful site on the internet - good job to all of you!
Now for my issues - I was diagnosed with FMS and CFS 16 yrs ago - did lots of research ended up studying naturopathy trying to get better - success! I haven't had a flareup in 8 yrs, then about 2 yrs ago, things started up again, gradually. New symptoms have emmerged though - symptoms not typical for FMS/CFS.
Had blood drawn a month ago, 3 wks after a round of Zpak for bronchitis. Of course the dr posted blood results online, but no call from his office, they seem to be on vacation. Can someone look at these results and let me know if my thoughts of possibly having lymes are correct? I'll only post the positives.
CMV IgG >10 - Abnormal: Above Normal High ANA without reflex to titer - Positive EBV VCA IgG: 381 - Abnormal: Above Normal High Lyme Western Blot: 41kDA IgM: Positive 23kDA IgM: Positive Intepretation Lyme IgM: Positive
Trying to make GP appt just to get his opinion. Know any LLDR in southern MD?
thank you for any help you can provide.
Posts: 250 | From East Coast | Registered: Jan 2013
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Welcome to Lymenet!
Unfortunately, band 23 is lyme specific. It only pops up when a person has lyme, and nothing else. A GP is a waste of time. You need to find a lyme literate specialist fast (LLMD, LLNP, LLPA, LLND). They are cutting edge. No one else has a clue about lyme IMO. They are also usually booked up for months, but if you ask to be put on their cancellation list, you can get in sooner. I was able to see one within 3 days of calling due to a cancellation.
You also want one who is ILADS trained (International Lyme and Associated Diseases Society). You can go to www.lymediseaseassociation.org and they will email you some names. Also, here in "seeking" but not sure if they are all ILADS trained.
Also, the book: Cure Unknown is a great read for people just discovering the world of lyme.
Hang in there, and stay positive!
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
Hi journeys, your history sounds much like mine. I had CFS too, about ten years ago with high viral titers, especially to CMV. It was under control for years until I started feeling poorly, only this time it was a "different" feeling sick than CFS. I can tell the difference between viral flares and Lyme/Babesia.
Your Test results indicate Lyme, due to your positive 41 and 23 bands, which are significant Lyme bands. Always with Lyme comes an overwhelmed immune system and activated or reactivated viral titers, such as yours with EBV and CMV.
I don't know if we had CFS first or if Lyme was always lurking and wreaking havoc on our immune systems, but many believe Lyme may be what brings on CFS. The good news is, you've been down this health journey before, and educating yourself will help you make the right choices for you.
I was in complete denial that i had Lyme because I'd been tested at least six times with negative outcomes. Your tests give strong indications that Lyme is your culprit. The next step is to find a the best Lyme-litterate doctor in your area. There are alternative routes too, but I can't speak to their efficacy.
Posts: 964 | From san diego | Registered: Oct 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Welcome to LymeNet and congratulations on your first public post!
I assume the lab was LabCorp or Quest.
You have a positive lyme test. LabCorp and Quest miss many with lyme (as many as half), so you are one of the ones they caught. (I was also.)
So, you have lyme. My lyme doctor had the fibro diagnosis for years and treated many with fibro. Then, he decided to start testing all his fibro patients for lyme. He told me that 100% of them tested positive. Then, he treated them for lyme, and they all got rid of their fibro.
Then, he tested himself for lyme and was positive. Then he treated himself for lyme and got rid of his fibro.
He was pretty successful in helping his fibro patients prior to learning that fibro could be lyme. Just like you.
There used to be one lyme doctor in southern Maryland, but no longer. I will send you a private message with info about doctors in Maryland and D.C. that I recommend.
No matter what your GP says about these results, you owe it to yourself to get to a lyme doctor and be treated for lyme. All of our country's doctors have been miseducated about lyme disease, so what they "know" about lyme is basically incorrect, only they don't know it.
Only once lyme becomes personal to a doctor (he or his wife or kids get it) and the standard treatment does not cure them, does he take the time to research the disease for himself. Then, that is when he starts to really learn the facts about lyme disease.
The standard treatment is 100 mg of doxycycline twice per day for 28 days. That may help a person who was just bitten a few days ago, but it will not cure you. You have been sick with lyme for many years. Chronic lyme requires long-term treatment with high-dose combinations of antibiotics.
If you go to one of the lyme doctors I recommend, you should have good success. But, the wait to get in with them is long, so make appointments now and then in about 2-3 months you will get to see a doctor.
If your GP will give you the doxy now, take it. It may improve some of your symptoms. Just be sure to take the doxy in the MIDDLE of a meal, regardless of what the package insert says. Eat half a meal, take the pill, and eat the other half.
If you don't do this, you will likely get bad reflux and stomach upset from the doxy. So, this is how all lyme docs tell their patients to take the doxy.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Thank you TF! I will take your words to heart.
Luckily my GP is the one that diagnosed and worked with me on the Fibro. I'm hoping he is as good with the Lyme - won't know until I can get into his office. He also believes in natural medicines instead of or with pharmacuticals, he leaves that up to me. I'm really not looking forward to the DR hunt like I had to do with the Fibro.
Wondering now if it was Lyme and not Fibro all along! Doesn't matter, on to the new adventure!
I look forward to your email with DR recommendations.
Posts: 250 | From East Coast | Registered: Jan 2013
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posted
Journeys, TF is a big proponent of seeking out the "best" doctors. She is the one on this board who continues to remind us all that the best LLMD you can find and afford, is the key to your recovery. There are huge differences between doctors, and your GP will not be the one to get you well. Ask around and take TF's doctor list, and get in to the best one you can find.
The problem with Lyme is its not just Lyme. It's a whole garbage-can diagnosis like CFS/fibro. There are co-infections and contributing pathogens which we all have, that may be more debilitating and prominent than Lyme. Then you add on metabolic, hormonal, detox, and all the clean-up from killing bacteria, protozoa and parasites. Only the very best LLMD's can navigate this complex illness. Alternative and naturopathic medicine will definitely benefit your recovery.
Posts: 964 | From san diego | Registered: Oct 2009
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posted
Thank you BaileyPup. Waiting on TF's dr recommendation list. I'm hoping there is one that is not 2-3 hours away. I know they have them in Baltimore, just too far away for me. Let's see what TF comes up with.
Posts: 250 | From East Coast | Registered: Jan 2013
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
journeys, I sent you my message with doctor names at 12:04 p.m. You need to check your private messages.
You should see a flashing message near the top of your screen telling you about my message, or you can click on "my profile" near top of screen.
Posts: 9931 | From Maryland | Registered: Dec 2007
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