Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
"Every night I wake up because my upper spine pain, headaches, head pressure, ear ringing, nausea are so bad and each day it is worse than the previous. It's "
This and the pain reminds of two things.
1) A coinfection like babesia
2) Fluoroquinolone poisoning. These are adverse drug reactions from cipro, levaquin and avelox.
You get progressively worse after STOPPING the drug and it causes terrible depression/anxiety. This can go on for YEARS and mimic Lyme which confuse everything.
The Lyme doctors seem to be CLUELESS about the 2 black box warnings and at least 3 FDA warnings.
Quinolones interrupt your body's ability to heal by altering your DNA. It only takes 1 pill to set off a reaction.
With what's going on with you, I'd be VERY cautious to take any of these in the future. They are given routinely for suspected UTIs and sinus infections. Also given for Bart), but Bart then develops resistance.
Ask what they are putting in your IV.
2013 FDA Warning about Fluoroquinolone antibiotics causing PERMANENT damage
posted
Dale, if your symptoms are worsening as the days are becoming shorter it could be a sign that you need the sunshine vitamin, vitamin D.
In reality, the way it works in the body is more as a hormone, so its name is a bit misleading. It regulates the development of immune system cells of all types, antibody producing cells, natural killer cells, signaling cells, etc.
When it is low, and it is often low for unknown reasons in Lyme sufferers, you are unable to absorb calcium from the foods you eat, and calcium stores will be mobilized from the bones,
as they soften, they become distortable by the simple effect of weight distribution, and the pain fibers in the outer covering of the bode will fire like crazy, resulting in a deep feeling pain.
It is not the only thing, but it is a very important one. Get a high quality vitamin D 3 that is in liquid form and preferably extracted from fish liver oil. Start at a low dose and titrate up.
There is tremendous controversy over what is appropriate for dosing, and what appropriate blood levels are. Ideally, you should have your blood level tested prior to supplementing.
Don't stop the magnesium, but make sure it is citrate and not oxide, the latter is poorly absorbed.
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Breaking up the post for easier reading for many here -
[ 11-24-2014, 01:43 PM: Message edited by: Robin123 ]
Posts: 60 | From Maine | Registered: Jan 2012
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
DALE, you said: "like this disease is way too strong. I take my supplements and sometimes herx 10 to 15 minutes after. But then they symptoms are just worse the next day. Its like it helped but didn't if that makes any sense."
a herx can last days.
I felt jsut like you. I was ready to die. I ran out of money. I lost all hope.
all I could do was pray.
I met someone that was sent to me as a miricle I think of at the very least a helpful messenger.
thru them I found a dr that could help me at this time in my life with the financial aspect of the tx way better.
now, a year later, I am a totally different person.
a year seems long, but it went so fast now that I look back. tough tough times , tough sx and herxing was unbearable at times and I did want to end my life for sure
but I hung in and know now that it was all worth it. there is a reason for your life. if you end it yourself the purpose will never be realized and you help no one. especially not yourself.
tell yourself you WILL get better and it will happen in one way or another- either physically or spiritually, or what ever way YOU personally need to get better.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3592 | From Eastern USA | Registered: Jul 2013
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2) Fluoroquinolone poisoning. These are adverse drug reactions from cipro, levaquin and avelox.
You get progressively worse after STOPPING the drug and it causes terrible depression/anxiety. This can go on for YEARS and mimic Lyme which confuse everything.
The Lyme doctors seem to be CLUELESS about the 2 black box warnings and at least 3 FDA warnings.
Quinolones interrupt your body's ability to heal by altering your DNA. It only takes 1 pill to set off a reaction.
With what's going on with you, I'd be VERY cautious to take any of these in the future. They are given routinely for suspected UTIs and sinus infections. Also given for Bart), but Bart then develops resistance.
Ask what they are putting in your IV.
2013 FDA Warning about Fluoroquinolone antibiotics causing PERMANENT damage
posted
hang in there! Thats all i can say...keep faith in God and yourself.
-------------------- May God Bless you, answer your prayers, relieve you of your pain and make you stronger than what you are today. Ameen. Posts: 341 | From Columbia, MD | Registered: Jan 2009
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Your story hits home. I just had a meltdown myself this morning. I just didn't feel like dealing with it anymore. And like many on this forum, relationships with family and partners can get very difficult.
The effects of the bug on the brain are unknown. Also, I do believe that killing good bacteria while we are on antibiotics does influence and affect serotonin production (most is produced in the gut).
So with all of this plus herxheimer reactions, treatment can be worse than the original presentation of the disease. I have found this out for myself.
But, I think of my daughter-and that makes me get up and take the one step at a time that I need to take in order to get through sometimes difficult days. I won't give up.
And I have started having good days again. As will you-but it takes a strong will and a lot of faith to get there Blessings.
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Breaking up the post for easier reading for many here -
posted
Wanted to add a couple comments to what Docluddite mentioned. It's easy to get a bloodtest level for Vit D. It's nice to get it done before doing the liquid D drops, just to see where you're starting from.
Re magnesium, there are a couple kinds. I have responded without side effects to mg glycinate. We all find out which versions we do best with.
Hang in there - folks will help you here -
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
Here's another idea for you - to experiment with natural anti-inflams. Like turmeric powder is an easy one - you can get it in capsules or as bulk powder that you dip an empty capsule into. I am feeling better on it.
Another is drinking mangosteen juice. I like the Mango-Xan variety. There's also noni juice, grapeseed extract capsules, boswellia and papain - any of these have the potential to lower the inflammation you're dealing with and help you feel better.
All the above can be found in healthfood stores.
Just curious - why are you traveling 12 hours in a car?
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
Thanks.. I was drinking. organic raw apple cider/crushed garlic/natural hone/tumeric a while ago but wasnt doing anything for me. maybe i didnt try it long enough. vacation . gotta go. feel like
going to hurl and have bad fever
Posts: 159 | From usa | Registered: Sep 2014
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Everyone here has reached out with fundamental outpouring, and if this in itself doesn't give you faith in the human race,
not sure what will. Except taking your newborn baby, and rocking the gift to sleep on your shoulder in a quiet room. Bond with your child, that will get you to hold on when nothing else will.
Also, a low dose antidepressant might be exactly what the Dr. orders as you get more lyme/health treatment under your belt. I think one of them helps with body pains- Lyrica.
So my advice is rock, feed, love that baby who needs you, and you will find you need it. And the Lyrica/ antidepressant. Then work the lyme.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
The car problem... Yes, I had many problems in the car. It is dangerous to drive, if you are neuro-lyme like many here.
It consumed too much of my energy, to drive. I needed to use my reflexes, and it was too much energy consuming, and brain inflammation didn't help either.
I had a car accident during lyme, because I just looked and didn't see any car coming. The car was not in front of me. And I crashed on it.
A neuro-lyme guy is pure danger in the car! If the normal people knew what we are, they would be damn scared of us, neuro-lyme drivers.
I got lost many times, driving, in streets I knew by heart for ages. Very simple ways. The car made me so confused, exhausted.
So many times I kept turning round a round-about, just because I didn't know where I was going.
Either I forgot my way, or I simply forgot the reason I took the car.
When I finally remembered, I had anyway to go back home, because I had forgotten something else (like if I wanted to go shopping, I had forgotten my wallet home....). The worse is when I forget how to get home. Then I pulled the car off the road, and waited.
One year before that, I was defending a doctorate thesis on two languages that were not my own, without problems.
During lyme, I could barely buy a loaf of bread at the baker's, as I didn't know anymore how much money I should give or get as change...
Taking binders after killers made my energy back, treatment made my brain inflammation get better, and things got better.
Hang on Dale! Read about natural treatments, try stuff on your own if you don't trust your doctors or you can't find help fast. The only thing that can kill you, is if you just give up trying treatment.
Posts: 6200 | From Brussels | Registered: Oct 2007
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Hang in there. We all understand. We’re all with you. I’m starting over once again because of lyme.
I’ll make this short. Have you been on Rocephin? (I think shots work as well as IV). Here’s a good oral protocol: Omniceff, plus the Natural Andrographis.
But my experience is that for some reason, sometimes some of my meds don’t work for me. Example: Ketek. I was on that for a long time. Great for the brain. Then couldn’t get Ketek. Then found an independent pharmacist who ordered it for me. But it looked different and had a bad effect. So I stopped taking Ketek. Perhaps some of our meds, even natural ones, get influenced by outside sources. So you have to make sure the source is good.
Are you well enough to exercise at all? Even when you are feeling horrible, if you can do some type of resistance workout, pushups for example, this might make you feel emotionally better. (If you do any exercises, do some stretches first to warm up. Though might want to check with Dr. about heart block).
About exhaustion. Someone mentioned low Vit D. My Dr. said I was low and ordered me to take 2000 units of D3 everyday. It has helped my exhaustion.
We’re all on your side.
Still Winning
Posts: 55 | From Maryland | Registered: Aug 2014
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posted
Dale, please hang in there. It's been a long struggle for me, and throughout this time, I've thought of ending my life too. I could not get the thought out of my head, and I was barely living.
I literally thought about killing myself every single day. But, as horrible and different my life had become since all this happened to me, I just kept on hoping and praying that some greater power up there would hear my pleas for help.
My life is nowhere near what it once was before the tick bites, but it's still a life. I can see my nieces grow up and start talking, and I can take joy in the very simple things in life. Humor is something that gets me through the really tough days.
My prayers to the powers that be, whoever they are up there, are with you. I hope you will keep on fighting and remember that you are not alone. All of us are here together fighting. Feel free to pm me if you need to, I'm here. Please stay strong, please keep fighting for each new day.
Posts: 19 | From VA now, used to live in NY (USA). Unable to work due to symptoms. | Registered: Aug 2012
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