I am wondering how long anyone out there who has had Lyme and possibly XMRV, has had to deal with psychological affects of the disease.
I'm particularly interested in anyone who had maybe went undiagnosed for an extended period (say 5 years), and then started antibiotics for a period and maybe didn't feel better... then did. I've been on them for over a year (try 14 months) with no real gains.
In particular, I feel very "edgy" and impulsive. Like, if my consciousness were a wave, it would be a short choppy wave with no real depth of movement. Like there is no force behind my thoughts or actions... only impulsive, short sighted reactions. Maybe this is related to the attention problems others describe. Maybe again it is the story with memory. I feel like I cannot "slow" down.
Anyone had luck with Zithromax? I was on cefuroxime and clarithromyacin beofre. I've dumped the clarithro for Zithro as of late, hoping that something will clean up the affects.
I also have XMRV which is thought to be the cause of chronic fatigue syndrome (I believe I must have CFS... I am always so tired), and so they have me taking retrovirals (AIDS meds) to see if they can boost my immune system. Anyone else had luck?
Is there anything I can try to "clear" up and to "wake" up? I just want to be myself again... I can't imagine this being my "life". I'm in my 20's...
Posted by Keebler (Member # 12673) on :
- You say: " . . . I believe I must have CFS... I am always so tired . . . "
The label "Chronic Fatigue syndrome" falls away when an infection such as lyme or XMRV is diagnosed for each of those can cause severe, chronic fatigue as a symptom. CFS need no longer be the umbrella term.
Do you have a LLMD who is treating lyme? And one who coordinates your lyme treatment with that for XMRV?
The XMRV drugs can be very hard on the liver. So, in addition to the infections causing fatigue, an overwhelmed liver also causes fatigue.
Are you taking LIVER support ? And ADRENAL support ? Both are essential. Absolutely essential. They can help. But it's also important to have a rigid rest/nap schedule and non-aerobic exercise that is enjoyable such as Tai Chi or Qi Gong, Yoga, walking, etc.
MAGNESIUM ? what is your current dose and what type? As you say: " . . . feel very "edgy" and impulsive. . . . " I'm wondering if your magnesium dose is too low.
What brand of fish oil are you on? You might need a different one.
I assume your diet is good but have you considered going gluten-free as that often helps with endurance. -
Posted by Lymetoo (Member # 743) on :
Are you doing things to detox?? Maybe you are simply very toxic at this point.
Have you been checked for babesia?? Babesia causes extreme fatigue.
Posted by thehause (Member # 21237) on :
Thanks very much for the replies.
I have tested negative for Basbesia (twice actually).
My LLMD is actually the same one who is treating me for XMRV. So I am taking to anti-retrovirals, which even thinking about is unsettling. He'd like me to take three. They are Inestress and Zidozudine (spell check those). I'm not taking the third at the moment because it's very expensive and I'm burning through so much money.
I have some magnesium I keep at work, but for the most part, I don't take it. I had a blood test awhile ago and I believe everything was "ok".
Adrenal support and Liver support? I don't believe I'm taking anything for either or these. Could you explain why I need to? This is mostly new ground for me. I do take some anti-oxidant stuff.
Not taking fish oil either, as I'm not sure why this was mentioned.
I had been taking some anti-oxidant type supplements in hopes of boosting my immune system. I try to "detox", though that seems to mean quite different things to different people. I rarely drink or anything "fun". But I do eat starches and sugars probably more than I should... a product of where I work and live.
Posted by m0joey (Member # 13494) on :
thehause,
Isentress is the one that seems to have the most inhibitory effect out of the 3.
Adrenal and liver support are important because the toxicity of the drugs will raise your liver enzymes, and cytokine storms due to unintegrated viral DNA will likely tax your adrenals. These are good to have in place even while not on ARVs.
Like you I am lyme positive per CDC criteria and also XMRV+ via culture, neg for babesia. I'm also in my 20s.. been sick for 5 years now. Tried long-term antibiotics, anti(herpes)virals, biophotons, ozone, and just about anything else you can name. I'm currently waiting to hear from the leading ME/CFS docs what combo of drugs is most effective for XMRV. The early reports on the big 3 (tenofovir, isentress, azt) are very mixed: http://cfspatientadvocate.blogspot.com/2010/10/ilads-conference-2010-dr-joseph-brewer.html
As for your suggestion that I work for an insurance company, just search my username here and on http://www.forums.aboutmecfs.org/forum.php and that should answer your question.
I look forward to hearing how you do on the drugs. You may want to contact Dr. Jamie Deckoff-Jones http://treatingxmrv.blogspot.com/ She is a MD who, along with her daughter, is taking those drugs for XMRV. You can PM me for her private email.
Posted by thehause (Member # 21237) on :
Hey m0joey, not neccessarily suggesting you work for an insurer. just illustrating that i should be risk adverse given the vagueness and goal oriented-ness of your messages. Thanks for the info.
Posted by m0joey (Member # 13494) on :
point taken. vagueness has a bit to do with my sucky physical state today. i blame my mama's placenta for the goal-oriented-ness
Posted by little_olive (Member # 28063) on :
How long have these psychological effects been happening?
People on antivirals often experience worsened and/or new psychiatric symptoms. I'd imagine being on anti-retrovirals would cause much the same thing... They can be very severe, your doctor may have to switch you to something else.
Posted by Lymetoo (Member # 743) on :
If you're eating starches and sugars you will have some neurological symptoms.
The impulsiveness, lack of clarity, and memory & attention problems have been happening since I've been sick with Lyme I believe. At least before I was diagnosed. I just never feel like I have the throughput of thought, like I can't slow down. It's so strange... very hard to describe. Like ADD I guess.
Posted by thehause (Member # 21237) on :
I've read these lists, I just never feel like I'm identified.
At the least, I'm confused... why, after 14months of antibiotics treatment, am I not really feeling better?
Posted by m0joey (Member # 13494) on :
you wrote that you're able to work. do you have postexertional malaise?
Posted by thehause (Member # 21237) on :
I don't really think so. I'm always tired, and it always hits me HARD in the afternoons and early mornings. I'm good around 3PM, but I'm quite 'fast' in my mind... like I'm not quite totally aware of myself. Sort of compulsive, impulsive, socially unaware.
The reason I say I don't think so is because it's not necessarily after working out (I work in an office. I believe I'm able to hold a job b/c I really used to be quite smart - high performer and all that). In fact, if i work out I tend to feel better - either a little energy burst or i'm sidetracked from feeling like crap. I think if I didn't do SOMETHING i'd just sleep.
Posted by thehause (Member # 21237) on :
What qualifies as Adrenal and Liver support? Just something OTC from CVS?
Posted by m0joey (Member # 13494) on :
adrenal--
glandulars, adaptogens, cortef depending on what you need
liver--
lots! apo-hepat, dandelion root, milk thistle, coffee enemas, mini-liver flushes (olive oil+lemon first thing in the morning)
�� Nutritional Supplements in Disseminated Lyme Disease ��
J.J. Burrascano, Jr., MD (2008) - Four pages
==========================
It's very important to have this book as a reference tool for self-care and support measures. It answers so many questions in detail that is impossible here on the forum.
Insights Into Lyme Disease Treatment: 13 Lyme-Literate Health Care Practitioners Share Their Healing Strategies
Connie Strasheim (Author), Maureen Mcshane M.D. (Foreword), Thirteen Lyme-Literate Doctors (Contributor) -
Posted by thehause (Member # 21237) on :
Thanks guys for the notes. One more question - how long were you on ABX before feeling 'better' psychologically?
Posted by elizzza811 (Member # 24713) on :
This is serious? Seems quite unlikely... have any stats on it?
Posted by thehause (Member # 21237) on :
So I believe many of my neuro symptoms can be attributed to the results of my recent SPECT scan. I'm looking into the yeast issues, but right now I'm not so sure that this is what is causing me issues.
does anyone have any specific meals (not items of food) they like to prepare? I'm looking / hunting for ideas.
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