posted
Hey All, After a very long battle with Lyme I have been in pretty
good shape the last three/four years. In November I woke
up, thought i had a cold and four months later I'm still house
bound and sick.
My Epstein barr titers are off the charts (literally) so i think
this is mostly EBV, which makes sense becuase my lyme
treatment was weird... I never really reacted to antibiotics
both IV and oral and I kinda think EBV had been my main
problem all along.
Anyways-- currently seeing a lyme literate Dr, who is
Klinghardt trained. Shes treating me and has me on Valtrex
and lots of herbs. I was doing a low dose of 1 gram of
Valtrex for two months and then we increased to 3 grams
this month (based off of ART results and Lerner/Montaya
protocols for my size-- 105 pounds) and my brain fog has
been AWFUL. I took a week off and am now trying
to increase slowly but I'm not doing well.
Detox includes: coffee enemas, daily FAR infrared sauna,
high dose fish oil, high dose curcumin, lymphatic massage, burbur/pinella, clay and charcoal.
I guess I am looking for anyone who has gone through this
on Valtrex and see if my experience is common and if you
have any pointers. Thanks!
Posts: 844 | From CA | Registered: Apr 2010
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
Sorry for what you're going through. I don't see many binders in your list, except for the weak clay and charcoal (that you may not use for longer than 2 weeks, usually).
If you're having die off reactions, it looks like you need some stronger neurotoxin binders. At least, that's what I did.
Are you on chlorella, zeolites, MSM etc?
If EBV has always been your problem, I don't think that drugs will work (I mean, if it's chronic...).
Are you also on herbal antivirals?
Posts: 6199 | From Brussels | Registered: Oct 2007
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The clay I am taking is from Zeolite (i think)-- its the BioPure clay and it says on the back that its taken from Zeolite?
I didnt think MSM was a binder but helped remove metals because of the sulfur (kinda like garlic), but didnt actually bind to it like chorella. Does it act as a binder in general?
Can you tell me how to determine which binders are good for neurotoxins vs other toxins?
I'm taking herbs too-- but there have been a few studies done showing the efficacy of Valtrex for EBV (Lerner and Montoya both lead studies with similar conclusions). I think a lot of people dont improve because they're not taking high enough doses. You need to be on at least 3-4 grams a day and most people maybe are prescribed 1 gram total.
Even during lyme treatment nothing i took helped with the brain fog (i took chlorella then). The fog is really my #1 symptom and nothing seems to touch it :-(
Posts: 844 | From CA | Registered: Apr 2010
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
Here is an article explaining better what you could test for you to take neurotoxins away.
I'm not really a drug-person, because I usually find myself more poisoned than healed after any drug, so I can't help you there.
Plus, German biological medicine does not recommend antibiotics nor antivirals (unless short term, strictly necessary).
Specially antivirals, because they somehow interfere with our own proteins if I understood well.
MSM helped me a lot, as well as chlorella. Recently I have been using zeolites too, with good results. And also something called Heavy Metal Detox Smoothie with wild blueberries, that is also helping me (I guess, due to its super antioxidants).
I hated brain fog. For me, it was almost always the result of neurotoxins, because when I tuned my binders, the brain fog went away (like taking binders 6 x a day).
I hope you find a solution. Maybe backing off your antimicrobials a bit?
Posts: 6199 | From Brussels | Registered: Oct 2007
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posted
Thanks guys. Its good to know people are doing binders 6 times a day-- i'm not doing them as frequently...it's hard though because i have meds to take three times a day and then also thyroid medication to take separately....so thats 5 times a day I need to take medications...
I got the book by Kasia Kines. I think it's good if you're brand new to all of this, the diet, the metals, mold, etc. I think if you have a Lyme background you already know that stuff...so its helpful, but i dont know that it was worth the $25 for me.
Posts: 844 | From CA | Registered: Apr 2010
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posted
We're all different re what's causing our symptoms, but I do want to mention that my brain fog was alleviated by finding out I was low thyroid. Then I went on Armour thyroid and no more brain fog - I felt present again. My doctor explained it was like my body went into hibernation and I woke it up again. Just an idea for you to check on - it means the doctor does several thyroid tests.
Since you're in CA, I'm pming you -
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Thanks Robin. Yes I definitely get brain fog when my thyroid
is low. I had a meltdown a few years ago when my thyroid was low and I thought I was relapsing with Lyme
I'm on medication for that. I think what Im realizing is that
my body just doesnt detox well. I've struggled with brain fog
periodically throughout my whole life and while I was in the
trenches with Lyme I thought that perhaps I had had lyme
as a kid...but now I'm thinking my brain is just super
sensitive to any sort of imbalance-- low blood sugar, low
thyroid, viral and Lyme toxins, etc. Does anyone know other
than the MFHTR test what types of genetic testing I could
do to try to investigate detox abilities and see if I can help my body with it?
UPDATE: I have been feeling better this week than I have in a month. I added more binders and a few weeks ago stopped and then slowly restarted my meds so I think that all helped.
Posts: 844 | From CA | Registered: Apr 2010
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