Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
So I was doing pretty well off meds -- not great, still some symptoms but hangin in waiting for my next LLMD appointment.
Then I caught the flu. Not only am I miserable from the flu but I am shaking like a leaf, twitching, buzzing, floating, my head is moving in its little circle, I've got tinnitus, bursting palpitations, globus sensation and I'm too miserable to sleep.
I'm on the verge of taking *anything* to make it stop. I'm so afraid this flu is going to take me back to last month and the ER. It can't be a herx because I'm not taking anything to cause one.
I've got some topamax lying around, some leftover abx, vodka, tramadol, oxycontin. I've already tried magnesium, curcumin, antihistamine, tylenol, chinese cat's claw, protein enzymes.
If I had heroin I would take it. I don't have any heroin. Any other ideas?
Posts: 2057 | From Florida | Registered: Feb 2015
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
How about some Niquil? That seemed to help a bit when I got the flu last time. At least let me rest for a bit...
Posts: 5237 | From here | Registered: Nov 2007
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Wow, you sound really sick.
When I get really scary symptoms , I totally flip out. Especially the vertigo. And I m all by myself so it's imperative that I remain calm.
I fight through what I can. If I m too ill to be able to deal with it all, then I take 1 Advil PM. After 20 minutes, if there's no relief, I ll take another. But usually 1 does the trick.
Hope this helps
Posts: 2977 | From Florida | Registered: Nov 2016
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posted
No alcohol or oxycontin please. You don't need more trouble.
I'm sorry you are so miserable. I got sick two winters ago and I just rode it out. Was sick for nearly two months, but much better within 2 weeks.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Yep gone are the days of hot toddies and old movies for cold and flu season, eh. The oxycontin is leftover from gallbladder surgery but I actually hate it, it makes me itch all over.
Got some Nyquil...that might be next...
Posts: 2057 | From Florida | Registered: Feb 2015
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Sorry you are so miserable. I am NOT saying it can't be the flu, but had another thought to add.
You said.. "It can't be a herx because I'm not taking anything to cause one."
Think back to when you stopped anything and everything that could possibly cause a herx. If less than a month or even 6 weeks, it could still be a herx.
Herxes still come when they come, having stopped meds or not. Even allergic reactions. We had one member here who had a severe reaction to Rocephin weeks after stopping it.
People are sometimes fooled, including myself. We stop antibiotics cause we just keep getting sicker, then days or weeks later we get hit with a herx we think can't possibly happen.
As a result we think we've suddenly gone down hill big time or look for other causes, like the flu or another illness all together.
Just a head's up on that possibility. Hope you do feel better soon!
Jordana
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Member # 45305
posted
Interesting! Never even considered that. Last meds taken 4 weeks ago and it was pretty bad then. Worst ever in fact.
I know I've got the flu because my brother brought it into the house and went down for a week before I got the same thing. But this feels about the same ( though not quite as bad) as it did four weeks ago, so maybe it could be something close to another herx.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
If at all possible, I try to load up on Vit C at the first sign of a flu and can sometimes stop one.
Not always - just had my first biggie one of the season last week, and we just gotta get through it - only good news - I get to lose some weight without even trying!
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
You've got a drug problem. And I would say it is clouding up everything else including your Lyme treatment. I have to say, its a little bit jarring to hear your listing off of opiods, pain killers, and alcohol in one long sentence. And then heroin. Who is giving all you this stuff? Now if you're serious about killing viruses quickly, cut off all arginine in your diet for a week. Arginine feeds viruses, and Lysine reduces Arginine. Eat dairy products, cheese, yogurt etc. No beans, seeds, nuts, legumes etc
Posts: 173 | From USA | Registered: Aug 2015
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me
Frequent Contributor (1K+ posts)
Member # 45475
posted
quote:Originally posted by Christopher J: You've got a drug problem. And I would say it is clouding up everything else including your Lyme treatment. I have to say, its a little bit jarring to hear your listing off of opiods, pain killers, and alcohol in one long sentence. And then heroin. Who is giving all you this stuff? Now if you're serious about killing viruses quickly, cut off all arginine in your diet for a week. Arginine feeds viruses, and Lysine reduces Arginine. Eat dairy products, cheese, yogurt etc. No beans, seeds, nuts, legumes etc
Respectfully, before accusing someone of a drug problem, especially someone in a fragile state, it may be better to ask.
Jordana stated the oxy is *leftover* from surgery, and I'm sure many of us have alcohol in the house even if we don't drink. There is alcohol in my home and I haven't had a drop in years.
I don't think she meant she would literally take heroin--I think she was expressing she is in major pain and needs it to stop. But I don't know exactly what she means; however, it's not helpful to accuse her.
Jordana is clearly in pain and in a fragile state and doesn't need added stress.
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Dear Jordana, I m so sorry you encountered an online name calling bully.
Dear me, Well put !
Dear Christopher, You were out of line. Please retread Jordana s post. She clearly states her first line of defense was herbal. Also,she is suffering something awful and is scared. I believe her mentioning heroin was her way of sarcasist humor of how dire she feels.
And to answer your question as to who is giving her all her meds ... Ask any Lyme sufferer how many prescriptions and herbal remedies they have accumulated over their journey and you would learn they could open their own pharmacy.
Because that's what the health care system and medical doctors do... throw drugs at symptoms and not getting to the reasons why a body reacts the way it does.
We are all God s creatures. Show mercy. Be humble.
Posts: 2977 | From Florida | Registered: Nov 2016
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me
Frequent Contributor (1K+ posts)
Member # 45475
posted
Thank you, BartenderBonnie.
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
. Hey Christopher:
The vodka doesn't belong to me. The painkillers are leftover from a surgery. The heroin was a joke. Just kidding, heroin=imaginary.
Thanks for your concern; I wish I had a drug problem instead of a Lyme problem. I also wish I had effective drugs for these symptoms because believe me if they existed I would take them.
I'm not offended, and thanks for your advice.
Posts: 2057 | From Florida | Registered: Feb 2015
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
hey y'all, I have vicodin, norco, ativan, prednisone, and gosh knows what'll you find in my medicine cabinet.
leftover from my colon surgery. I don't take it tho.
and, man, I've got so much alcohol, let's see, kahlua, wine, port, gin, bourbon, whiskey, rye, rum, scotch, you name it, I've got it. husband's friends drink. alot I bought cruising. cheaper.
I am not an alcoholic. I am a teetotaler.
but to look at my bar and medicine cabinet, you'd probably call me a downright drunk.
all of us have a stock of meds. I jus cant throw them away cause I spent sooooo much money.
and there are days when I'm having migraines I'd take anything I could get my hands on, but I don't. I jus tough it out.
I know exactly how you feel.
for flu, it's tough cause I have high blood pressure. nyquil is out. I'd ask the pharmacist. we have lyme so we'll react different than most people.
and remember, no flu shots.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Thanks -- no flu shots. I'm coughing today; worried this is going to turn into bronchitis. I've herxed on every abx I've taken and I'm sort of "herxing" now.
Lyme makes everything tricky, eh.
Posts: 2057 | From Florida | Registered: Feb 2015
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
another thought, my bronchitis turned into asthma.
am now on ceftin and an inhaler. I'm 67 and now have asthma....
like you, mine all started with a cold.
so watch for asthma.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi <<<<< Jordana >>>>>,
I am so sorry to hear you are feeling so cruddy,weary and weak.
Dear Lord, Jordana is tired,in pain,coughing,quaking,and aching. Please help her symptoms to calm. Let her know that you care about her,and ease these symptoms so she can get restful and restorative sleep.
And perhaps you could send some Angels just to watch over her extra while she rests. We give Jordana to you,and ask for healing Mercy! In Jesus Name Amen!
To many of us, know this utterly exhausting weariness from Lyme and Co's,and a host of symptoms and herxing troubles.
A lovely soft blanket/quilt[not to heavy tho'], Or if it is a hotter climate, a soft cool set of sheets,always feels wonderful.
I'll be keeping you in mind,and hope you feel better soon, Jordana!
Jus' Silverwolfi here
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
That's what's really horrible about this disease. When it starts it's just a little odd but then it just keeps moving in and taking territory.
When I started my back was fine; now I have cervical spondylosis and all kinds of slipped discs everywhere.
I have an underpneumatized mastoid. I have an adrenal adenoma, left cardiomegaly, multinodular goiter, iron deficiency anemia, and then when I was in hospital they found "bibasilar atelectasis" --
because I when I slipped the disc my ribs went spastic and the bottom of my lungs collapsed.
I have bladder pain every day and have no intention of going to get a dx of interstitial cystitis because I know I'm peeing flagellin.
This is ON TOP OF the neurolyme, double vision etc I've had for two years and so on. I was perfectly fine two years ago and I just keep picking up dysfunctions.
Asthma, never had it in my life, but why not.
. Thanks for the prayers, Silverwolfi.
(breaking up the post for easier reading for many here)
posted
There is nothing worse than a cold, flu or whatever on top of lyme!!
Thinking of you and hope you feel better soon
Posts: 88 | From new england | Registered: Oct 2016
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
So sorry about the flu. It's so demoralizing to get sick on top of Lyme but it WILL pass. When I'm sick, I take lots of vita C (buffered), elderberry and takuna. As well as lots of fluids, chicken broth, etc.
On the up side, at least you know what it is since you know where you got it from.
You had another post out there that I've been meaning to respond to in which you were looking for general direction, wondering why you just get more sick on abx. You strike me as someone who doesn't detox well at all, probably due to genetics. Also, there very well may be other factors contributing to the toxic load, like mold.
If this is in fact the case, you don't want to just keep hitting stuff and getting worse and worse, as the cytokine storm it induces can be damaging your body. You would need some major detox and would need to be under the care of a doctor who really gets how to tailor this to you.
If you can travel, I can PM you the name of a doctor who understands all of this. Sadly, too many of them, even really good and well-known ones, don't.
And don't worry, we ALL have enough drugs on hand to be accused of a drug habit. My allergist nearly fainted when I brought in my bag of meds and supplements. It was almost funny.
Posts: 1737 | From Virginia | Registered: Aug 2011
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Jordana
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Member # 45305
posted
Thanks WpinVA, I'll keep it in mind. I'm actually going to see a Big Wizard tomorrow to see what he thinks of my Lyme so far.
Yep. On a plane with the flu and NO BENZOS. I hope I don't cause some kind of medical incident .
Posts: 2057 | From Florida | Registered: Feb 2015
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
I also want to tell you that I think detox is always an issue but I think my problem is autoimmunity, specifically neuroimmunity. For a long time i didn't think so because I started with a positive ANA that went negative and the anti-achr antibodies dropped from 25 to 18.
But...my "herx" last month was some crazy ****. I walked into the ER and told them I was dying. Once I stopped the meds the worst of the reaction lasted a full week and I'm still not back to baseline. Minocycline is documented to cause all types of autoimmunity including vasculitis and lupus; again I didn't think that was going to happen to me because AI is nowhere in my family even. .
However, the more I thought about it the more I realized I was in way over my head and I needed to see someone who *really* knows what they're doing or I might end up in a diaper.
I made an appointment with a doc in DC and in the meantime I'm swallowing a ton of turmeric and p enzymes trying to get back to baseline. Only mildly successful; I'm not back to where I was before the mino/rifampin the doc I was seeing prescribed. I'm better, but...not there. After a month it's probably not detox; might be but I think there's more going on.
Posts: 2057 | From Florida | Registered: Feb 2015
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me
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Member # 45475
posted
Good luck on your flight, Jordana. I have an appointment with him in a few minutes. Let us know how the appointment goes. Hugs!
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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WPinVA
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Member # 33581
posted
Just sent you a PM, Jordana.
Posts: 1737 | From Virginia | Registered: Aug 2011
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Awesome. I am in a hotel.
I am really glad I made it and really pissed at medical science for making me get out of bed to see a special doctor a couple thousand miles away.
I'll let you guys know what they say.
Posts: 2057 | From Florida | Registered: Feb 2015
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me
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Member # 45475
posted
Rightfully so. Be sure to ask him about IV glutathione pushes.
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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posted
Jordana, before I figured out I had lyme, every time I got sick I would crash.
I'm not sure if it's because our immune systems kick in or out or what, but I could count on at least a 2 week crash every time I got a simple cold.....
I think it's an overload of some sort. Not really sure. I feel your pain. Hang in there one day at a time.
I have no helpful tips, except some people say alka seltzer gold.
Know we are thinking of you.
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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me
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Member # 45475
posted
Good luck today, Jordana. Let us know how it goes.
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
rooting for you ..keep us postd lomatium and iv vit c helped me with lots of propolis, also the enzyme maybe breaking up biofilm , i stopped on days i dont treat ..
.for my vasculitis which didnt have a high esr ,was clearly there via livedo ,i did iv curcumin and rocephin helped some .i think the bugs in the endothilial lining get killed and the immune sx is like there they were...whaalaa inflammation of the veins ...
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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. Hey Christopher: 
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