posted
I was in Florida for a week just trying to escape reality, not like I could enjoy it too much. It was just good to be away now I'm back home and feeling more confused and hopeless as ever.
My 1st LLMD appt was August 15 and it went ok. She pretty much told me based on my symptoms and significant test results that it is very probable that I have Lyme. I was really hoping that she would tell me that I 100% have Lyme. She drew blood to test for Co's and she wanted to strengthen my immune system first so she gave me Cats Claw and an Immune Booster. I see her again next thurs so we'll see what happens then.
I'm just going crazy over here, now doubting if Lyme is even the reason for my ill health so the past couple of days I've been looking online doing research about CFS and possible causes like EBV and other viruses(since my EBV IGG was very high at 2411) I dont know I was more confident right after my LLMD appt now I'm thinking the worst.
I was told back in May that I have CFS (based on symptoms and Very high EBV VCA IGG titers 2411) I really hope that it is not CFS. I'm just so scared that I will always feel like this and that my life is over. I'm 29 years old and my life was just starting to turn for the best before I got sick.
I see all of my friends buying houses, getting married, Kids and just living life and I dont know if that will ever be me. I'm sorry to bum you guys out, I quess I just needed to vent to someone who understands what I am feeling. I hope to get some good news next week.
Mike
Posts: 103 | From New Jersey | Registered: Jun 2008
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Private message sent. Read the following link and get tested for what is listed there. Yes, you could have CFS based on your EBV titers.
posted
Hi Mike and welcome. I'm sure others will be along to discuss high EBV titers with you. Wondering how long you've had your symptoms? Have you recently been exposed or have you had your symptoms for awhile?
Just wanted to say that everyone is facing exposure to Lyme and coinfections now, including all the people you see getting on with their lives.
I personally think we Lyme/co patients are in the best position now to be telling/alerting/informing the public about how to protect themselves and their pets.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
I 1st had symptoms start in Dec 06 to Feb 07 went into remission then started up again in Mar 08 to the present.
Posts: 103 | From New Jersey | Registered: Jun 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Mike,
I am so sorry to hear what you are facing and feeling.
About Timaca's post - VERY good link and tests. Yes, get tested for Cpn especially - and others. It's not enough to stop even with lyme and TBD testing.
Best of luck. this can get better. Knowledge is power.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" By Virginia Savely, RN, FNP-C
*****
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- FULL ARTICLE AT LINK ABOVE.
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in the Savely article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
===================== =====================
`` . . . the immune system does not begin to repair itself until the beginning of the fourth month of antibiotic treatment. . . . ``
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
- 2/3 down the page, you can download Guidelines for the management of Lyme disease
Lyme Disease and Modern Chinese Medicine - by Dr. QingCai Zhang, MD & Yale Zhang
you can access his web site through www.hepapro.com or try www.sinomedresearch.org and use "clinic" and then "clinic" for the passwords or call Hepapro.
poster's note: while few get well without attention to nutrition and supporting the liver and adrenals with specific supplements, anyone considering complementary approaches should be sure to have first read the abx protocol for a better grasp of the task at hand.
Basic, supportive herbs to "get the body stronger" are NEVER enough to get over lyme or coinfections. Very specific attention must be paid to the nature, life-span and forms of each tick-borne disease (TBD).
Each infection is treated differently and it is no minor undertaking. It is best to seek guidance with skilled professionals who are truly lyme and TBD literate. They will know, specifically, how to proceed.
This excellent article explains a lot about what chronic neuroborreliosis can do. It also details other chronic stealth infections, such as Cpn - and others.
This is why you need a great doctor and a strong plan of action.
Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Hey Mike...good to see you back. Hang in there. I know how you feel! My EBV titers were high too. This tends to be common with lyme patients.
Just ask your doc a lot of questions--about viruses and about the co's. Get the tests if you're in doubt.
There are some viral treatments if you and your doc ultimately suspect a viral component to your illness...
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Even if it's not Lyme, it still is likely to be both viral and bacterial in nature. A good LLMD can treat you even if it's not specifically LD.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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