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Posted 3/24/2012 11:15 PM (GMT 0)
I'll try to keep this as short as possible...

I'm a 24 y/o male. My story begins with mononucleosis back in late 2004 (after already having it in 6th grade). Symptoms followed the typical "post-viral fatigue" spiral, with the mono "clearing up" after 6 months or so.

The flu-like feeling subsided, but I barely recovered and have been functioning at an intolerable level for the last 7+ years. Weight loss, throbbing headaches everyday, constant joint and muscle pain, unbearable weakness, severe fatigue, and an arsenal of neurological dysfunctions too long to list. The one thing I know for sure is that my symptoms have been CONSTANT and PROGRESSIVE. Sensitivity to light and sound, intolerance to alcohol/sugar, white matter/lesions on my MRI screenings, sinusitis... you name it.

Anyway, I sought out a LLMD in another state. After my first visit, he started me on Doxy, B12/glutathione injections, Teasel root, Samento, and home oxygen. Here's my "bad" bloodwork BEFORE starting that treatment:

% CD8-/CD57+ Lymphs   =   1.9

Abs. CD8-CD57+ Lymphs   =   36   

WBC   =   9.9

IgG, Subclass 1   =   534

IgG, Subclass 4   =   20

Rocky Mtn. Spotted Fever, IgM   =   0.82

Tumor Necrosis Factor-Alpha   =   1.2

Complement C3A   =   198.6

Complement, Total (CH50)   =   36

Lyme Serology, Serum   =   0.063

IGM Specific Bands   =   41

IGM Non-Specific Bands   =   (20, 66)

IGG Bands   =   41, 58

________________________________________

Here are my numbers after 3 months of treatment:

% CD8-/CD57+ Lymphs   =   2.1

Abs. CD8-CD57+ Lymphs   =   27 

WBC   =   4.1

MCHC   =   36.3

Lyme Serology, Serum   =    0.067        

IGM Specific Bands   =   41

IGM Non-Specific Bands   =   (18, 20, 34, 58, 66)

IGG Bands   =   41, 58

IGG Non-Specific Bands   =   (20, 25)                                      

___________________________________________

Again, these are just what stuck out to me as significant changes. Just wanted to get your thoughts to make sure this is an accurate Lyme diagnosis before I start IV antibiotics. ANY INTERPRETATION/ADVICE WOULD BE SINCERELY APPRECIATED!

Thanks,

Aries

Posted 3/24/2012 11:27 PM (GMT 0)
The only reason I'm even asking this is because I've always felt that my symptoms stemmed from a virus, and my EBV titres have been consistently elevated throughout this illness.

It seems like the way I feel could just as easily be attributed to this, so I want to make sure the IVs are the right choice for me before starting down that road.

I tested negative for CMV, Parvovirus, and other tick-borne viruses.

I feel crazy even asking this, but I'm feeling worse than ever and I'm really scared. I've been dealing with this illness by myself since I was 17. Getting the Lyme diagnosis was the best thing that ever happened to me, but I can't help but feel conflicted.

Again, thank you for reading this.
Posted 3/26/2012 1:00 AM (GMT 0)
I'm sorry that I don't have much insight into your labs. But I just wanted to say good luck. I understand why you are feeling scared. I hope you get the answers you need.

By the way, my lyme tests were inconclusive, but I moved forward with treatment. My symptoms have improved slightly, but they weren't the typical lyme symptoms so it's hard to compare to yours.

Just wanted to say good luck.
Posted 3/26/2012 2:42 AM (GMT 0)
Hello Relentless Aries,

Well, I am glad you are getting treatment for Lyme Disease!

It is typical for the tests to pick up more bands as you commence treatment as your body is starting to actually produce the antibodies that the tests are looking for.

Of course, the best person to talk to about your test results is your doctor. We are just rank amateurs here!

I hope you get some relief from your symptoms soon.

More and more Lyme Literate Doctors are seeing better results with a "low and slow" approach for long-held infections. I hope you are seeing an ILADS certified doctor, they will be most likely to treat your Lyme effectively and thoroughly.

For good tips on how to weather the treatment process well, please see our "New to Lyme?" thread at the top of the forum.

Good luck!
Posted 3/26/2012 5:05 PM (GMT 0)
R/A - you have an LLMD, no? That would be your best bet to discuss these with. My Lyme reactivated EBV in me - my LLMD pointed me to info. on a phenomenon called "quorum sensing' whereby the Bb can actually 'communicate' with various viruses and recruit them to help suppress your immune system. My LLMD has treated many cases of reactivated viruses due to Lyme and the standard procedure she uses is to treat the Lyme itself for it's the "general" of the army - once the general's neutralized, the body can typically regain its power to overcome the other reactivated critters (viruses). Good luck and be sure to ask your questions of your LLMD!
Posted 3/26/2012 5:22 PM (GMT 0)
Hi relentless aires - your situation sounds a lot like mine (right down to the being 24 and dealing with this since 17 thing!).

I've been in treatment for Lyme for about 9 months now...my CD57 went up at one point, but since has steadily dropped, and my EBV, HHV6, and parvovirus titers are still really high. My doctor has been pushing my insurance company for IV abx but I've had the same worries as you, since my viral load has always been so high, and mono is what set me off back when I was 17 - which is why I treated my condition as CFS for a while (and I did make some progress treating from the viral angle, although it all undid itself within a year or so because I never addressed the bacteria).

One thing you may want to discuss with your doctor is biofilms - my doctor and I have pretty much narrowed that down as my main problem - my CD57 keeps going down and my virus levels don't change - so perhaps before, or during IV therapy, you might consider also doing more of a biofilm protocol? I see that you're on the samento (so am I) but my doctor thinks I need to be more aggressive with that, so many the situation is similar for you.

I know what it's like being sick so young - but at least we have a lot to look forward to once we start to get better!

In the meantime, other things can also help - diet, exercise (depending on what your body can tolerate), detoxing, which we have a great post on in the "New to Lyme" thread, and especially positive emotions, as simple as that may sound!
Posted 3/27/2012 2:36 AM (GMT 0)
Thank you, guys. I really appreciate the responses.

@mercuryb - Thank you for that insight. That made a lot of sense to me... I just e-mailed my doctor to get my most recent EBV titres and get his thoughts on the issue. What machine do you Rife with, if you don't mind me asking? I purchased the Beck protocol equipment from SOTA a couple years back, but have yet to use it consistently. I've also read that the GB 4000 is a great choice, but a little out of my price range at the moment.

@twinkl - Thank you for your kindness. I hope you're doing well and continue to improve.

@achievinggrace - I appreciate your honesty. Just getting some validation from those who are suffering has helped to re-assure me of my diagnosis. This illness has turned me into a different person, mentally and physically. Anxiety and worry are terms I didn't know the meaning of before getting sick. And I agree, it seems my doctor is taking the "low and slow" approach, as it has proven to be effective for late-stage patients.

@yazzer - Yes, I have an LLMD and he's been very informative. I have to travel 5 hours each way to see him, so sometimes when I'm feeling alone, I have a tendency to worry about these things lol. What you said makes PERFECT sense and helps to re-assure me.

@borderlyme - That's very interesting. You're the second person that's told me that, as far as the age thing goes, in the last 2 days. What state are you from? As far as the treatment, I started a pretty comprehensive biofilm protocol about a week ago and am planning on ramping up super hard over the next 3 weeks. I'll let you know how it goes. Please feel free to let me know how you progress and if you have any questions, please ask. I think our stories parallel eachother in many ways.
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