posted
As my health deteriorates with each passing day I was hoping someone can give me some helpful hints as to what I can do in the mean time before I see my LLMD.
The weakness and pain has taken over me. And if it wasn't for Xanax, my body would be in constant anxiety that I simply can not control. But is there anything over the counter or at health stores I can buy to start strengthening my system
In preparation for treatment? All I currently take is vitamin C, B12, magnesium, iron, and turmeric curcumin. Any helpful hints are greatly appreciated.
Also.. Has anyone had the symptom of feeling like your body is vibrating? Like internally? It's almost like a tremor but worse.. It literally feels like I swallowed a vibrating cell phone. I don't know how else to compare it but I HATE this symptom.
Posts: 123 | From New jersey | Registered: Oct 2015
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Get started on reading and taking liver support / antioxidants like the curcumin that LymeToo suggests. If curcumin is too strong, go with Turmeric, it's the same thing, just not nearly as condensed. If curcumin works for you, you do not also need turmeric, though.
LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- That vibrating sounds like excitability and it can come from adrenal overload. Are you taking any kind of stimulants? If so, I'd bet all the money in the world that they are too stimulating for your body at this time.
Even caffeine or any kind of MSG. Kelp, or glutamate in supplements can do this, too.
Any kind of "energy" products should be avoided - big time. Adrenal support, however, it vital.
So is resting in a quiet dark room as much as you can when you feel that way. This matters so very much not just to adrenals but also the various nervous systems that are just so overloaded. They require major time out from sensory input.
Be sure to turn off at the power cord ALL electronics in your bedroom an hour prior to sleep, either at night or if resting during day. Get clear away from all connective devices.
Do not look at a computer for an hour before bed.
Do not even keep a cell phone in your room, put it as far from you as possible, other end of home, away from others' bedrooms, too.
This really matters. Even when off, the cell phone vibrations / chargers can interrupt the heart and brain rhythms. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
See post: Caution: Aspartate; Glutamine; and Phenylalanine (3 excitatory amino acids that can be wrong for us when added as supplements, beyond a normal dietary level)
Seaweed / Kelp has its own natural MSG and can be very excitatory
posted
Thanks everyone. I don't believe I am not taking any stimulants and def no caffeine right now. Thanks for a the tips Keebler.
I am not taking any adrenal support right now so I should look into that.. Thank you
As far as the circumin.. The bottle is from GNC and it says turmeric curcumin 1050mg ... Is this ok to keep using ? And is it ok to take more then once a day ? It says extra strength powerful Ayurvedic antioxidant... Doesn't feel very powerful thoigh Posts: 123 | From New jersey | Registered: Oct 2015
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posted
Thanks everyone. I don't believe I am not taking any stimulants and def no caffeine right now. Thanks for a the tips Keebler.
I am not taking any adrenal support right now so I should look into that.. Thank you
As far as the circumin.. The bottle is from GNC and it says turmeric curcumin 1050mg ... Is this ok to keep using ? And is it ok to take more then once a day ? It says extra strength powerful Ayurvedic antioxidant... Doesn't feel very powerful thoigh Posts: 123 | From New jersey | Registered: Oct 2015
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posted
Oops didn't mean to post that twice ... The magnesium bottle says MagOx 400 Is this the correct kind ?
Posts: 123 | From New jersey | Registered: Oct 2015
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Probably not, that sounds like magnesium oxide. If so, that's the worst kind to take as it does not get absorbed and just a waste of money. If the "ox" stands for something else, then ?
I don't have time to look now but if you could post the label name . . . or a direct link, that would help others reply, too.
The next time you buy turmeric / curcumin, I would not buy GNC. In fact, I'd not buy any GNC label product. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Hm.. You are probably right that it is the wrong kind .. Will anyone post a link of what the correct one looks like? Thanks.
Posts: 123 | From New jersey | Registered: Oct 2015
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- The front of the label clearly states that it's Magnesium Oxide.
There are far better kinds that will help you feel better than this. Look for magnesium glycinate or malate for starters. More detail here:
posted
I love my ReMag but it's a little pricey. www.rnareset.com .. Do not get the RNA drops.. I buy the ReMag and ReMyte.
KAL has a good mag glycinate .. or you can get mag malate.
Right now Vitacost is out of KAL mag glycinate. I just ordered it somewhere else, but I'd have to check on that... different site than I normally use.
NOW brand may have some.
The MagOX is good for constipation.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Semia,
I hope the style of my posting did not cause you to think badly of yourself. Energy issues, pain in joints, etc. I try to get right to the point of action and just can't do the "soft" stuff like I might like.
No, my dear, you are not an (I do not use disparaging words). You are a bright and wise being. This is just a lot to sort through.
I've bought several bottles of magnesium oxide by mistake -- it takes time to sort it out. As TuTu points out, it can have its uses, every now and then.
Please remember that you have an intelligence - being ill can just make us all question that. But we are not (negative label), just overwhelmed or not yet quite clear, up-to-speed or with it. How's that work for you when you have a brain blip or bump in the cognitive processing department?
Even when we do mess up, we are absolutely not a mess. Even when it seems like it. We all have style, grace, intelligence, wisdom (even if we can't quite find it sometimes).
Many of us have had dozens of insults from doctors over the years, or from family, friends and I rather go bonkers to see anyone say anything badly about THEMSELF. We'll get it enough from others, so, I hope you can find some kind & cute terms that work for you during times of brain blips. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
No worries Keebler.. I'm glad you told me so I can order the right kind now . I am a bit hard on myself this whole process is just frustrating as you all know !
Posts: 123 | From New jersey | Registered: Oct 2015
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posted
Some people do like mag oxide and get results. I don't except for the intestines. The admin on the Magnesium Advocacy Group is a proponent of using oxide. I guess it works for her.
I got my KAL glycinate today .. it was from the Vitamin Shoppe.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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posted
While waiting for an LLMD, you may wish to try the Samento/Banderol combination, which has been proven to substantially degrade all Lyme morphologies----biofilm colonies, motile spriochetes and cysts in vitro by Dr. Eva Sapi. (Biofilm colonies are resistant to antibiotics-- and doxycycline prompts cyst development, each of which harbor up to 12 baby spirochetes) (see astounding photos of biofilm colonies by scrolling down to the photos here http://www.townsendletter.com/July2010/sapi0710.html)
A cheaper form of Samento is just called Cat's Claw which you can get at health food stores.
If you do try Nutrimedix Samento and Banderol drops(available on Amazon), (30 drops each per day)work up slowly. I had to eventually stop taking samento because I began to get palpitations after a few months, and I would not quit my 6 cups of coffee LOL-- but I think it does work. I tolerate 30 drops of banderol daily with no side effects-- buts its the Samento-Banderol combo that works best.
Or if you can't afford the Samento or Banderol just try some Grapefuit seed extract (which kills cysts) Heres the study that shows it works in vitro: http://www.ncbi.nlm.nih.gov/pubmed/17565468
Sarsaparilla is also an herbal remedy with good success in syphilis which is another spirochetal disease. Sarsaparilla also attaches to toxins, and is a saponin, which kills spirochetes by soaping their fatty outer layer to death!!.
You can buy bulk Sarsaparilla online, and just brew the tea to drink for 20 days.
Good Luck!! It is a permanent infection, but I do believe it can be dampened and controlled with treatment.
Posts: 696 | From New York | Registered: Aug 2006
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
Yes, I had that vibrating - it was weird! My LLMD knew exactly what I was talking about and said it's common with Lyme. I don't have it anymore.
So... how long until your LLMD appointment? If it's a while, perhaps look into finding an integrative/functional med doc who is Lyme-friendly. Won't take the place of an LLMD but perhaps can help you in the interim.
On your own, you could go gluten-free. That often helps a lot with Lyme, perhaps because gluten can be inflammatory. Cut out processed foods as much as possible. And start some gentle detox like water with lemon, epsom salt baths and saunas.
And you can learn about treatment. There is a great book called "Why Can't I Get Better" by a top Lyme doc.
Posts: 1737 | From Virginia | Registered: Aug 2011
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posted
Thank you WPinVA. My appointment with her is on the 19th. I most likely won't find another doc until then. Thank god it is November now.. I am getting closer and closer.
Still waiting on my igenex lab tests .. And it should come in right on time before I see her. So hopefully not too much longer. All of my standard quest labs have come back negative.
But I have all the symtoms of Lyme. Put my whole life on hold now and am basically bedridden now. That vibrating thing along with intense anxiety and muscle jerks are my worst symptoms.
I hope that with treatment these will lessen.. Will def start trying the gluten free like as of now! Thank you for your help. How long did you go before you got diagnosed? How are you doing now ?
Posts: 123 | From New jersey | Registered: Oct 2015
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posted
The above is very helpful for me -- thanks to all including Semia.
If it's alright, I'm going to slightly hijack this thread in a way that might be helpful to OP.
I also am waiting for my first LLMD appt. Have one appt for December 2 that's a little far from me (an hour), and am trying to get one with a doctor much closer. (I'm in SF Bay Area.)
I am going to try all of this stuff to mitigate my symptoms, and have hope that I will stop the progress of my total breakdown...
However, this is my question: I found a very nice primary care doc (PM me for info) who signed off on whatever test I want to order at IGeneX (I am planning to take off work and drive down to IGeneX and just have them draw the blood there on Thursday). She also prescribed doxycycline 200mg 2x/day at my request (after some brief reading, I thought this might come in handy). I planned to start the doxy after I did the IGeneX test on Thursday.
But after more reading, I'm concerned about starting to take this myself without guidance from LLMD. But like Semia, I really want to start aggressively treating ASAP because I'm declining so much, I fear that I might revert back to being bedridden any moment.
I'm torn about this -- should I start with doxy ASAP (plus as much natural supplement and lifestyle changes as possible to help/complement with doxy), or wait another month until I see an LLMD?
Also: I tried Natural Calm Magnesium Citrate starting two days ago, and felt great yesterday compare to the last month of progressive decline, but today felt much worse and the magnesium seems to be going right through me if you know what I mean. (I increased it from ~500mg to 700mg yesterday, then took a ~500 for my morning dose today and that was apparently too much.) Should I lessen the dose again, or switch to magnesium glycinate? I already bought KAL brand glycinate.
Finally, big big shout out to Robin for surprise diagnosing me. We met entirely serendipitously over the weekend as I was working 60hrs/week on the campaign trail trying to headline a ballot measure campaign election (today...results in 2 hours) all while my body and mind were deteriorating rapidly. Thanks Robin! You saved me!
Posts: 1 | From California | Registered: Nov 2015
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