posted
So I wasted $83 on Provigil, which a few people on here recommended for unrelenting fatigue. It does absolutely nothing. I actually think it worsens my brain fog, and strangely, even my fatigue.
I feel like I'm slowly slipping into a coma. I'm 20 years old, though I feel like a sickly 90 year old. I need something that will truly help me regain energy. Anything.
I'm going to call my llmd tomorrow and ask him how much B-12 shots are and if I can be prescribed those.
Desperation has long since set in for me. I believed I could win this fight at first. Now I've lost all hope. The abx do nothing; or at best, they are increasing my fatigue daily.
Would it be worthwhile to get my adrenals checked? Anything else? My llmd never had anything checked on me.
I'm on Zith and Cefuroxime. Next time I see him, I'm telling him I want to be put on Rifampin and Minocycline.
Does Minocycline cause bad sunburning like Doxy? Even if you use sunscreen?
Posts: 98 | From WI | Registered: Feb 2008
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
While B-12 shots have helped a lot of people here,
It didn't do anything for me.
The all day type of fatigue may be babesia.
Do have your adrenals checked.
Watch your diet as any type of sugar/simple carb
Can make me so fatigued I could sleep standing up.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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bettyg
Unregistered
posted
b12 shots didn't help me either; $50/bottle.
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Don't give up! You said it yourself, that you have not checked anything!
First things first.. do a full complete blood count including a metabolic panel. That will check everything from your iron to electrolites to your thyroid function.
If and when that comes back normal (which I would encourage you to look at your numbers and consider anything that is boarderline high or low) then refocus with your doc.
You might find the answer right in a blood test. So please, don't give up the fight yet. It's strange how your body is linked to your mind. If you feel like your done for, then you body will follow.
Please.. pick yourself off the floor... and start a new approach.
There is no other option other than THROUGH IT!
We are pulling for you... and please know.. many of us have been in your same spot. It sucks! But it's not permanent.
-------------------- 26 months of treatment. And counting....... Posts: 298 | From Northeast Kansas | Registered: Oct 2006
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daise
Unregistered
posted
Hi bernieb4,
I used to live in Wisconsin, near Sparta!
You're so sick. I remember back when I stuggled. HA! "Struggle" isn't the word for it, huh?
You're 20 years old. I know it may not seem like it, but you--bernieb4--have your whole, big life ahead of you! But with a nasty interim.
It's not at all fair.
Personally, I think Lyme stress is caused by ... Lyme. But it's also very much caused by all the cow pies we Lymies have to stomp through.
We are challenged in every way, huh? Every way.
Some day you will be able to say, I'm a veteran of Lyme disease. You'll remember all it took for you to get your life back. Some still have fatigue, etc. but they do get their life back.
Some your age have gone through basic training in the military. Well, I've been through basic training (decades ago!) and I'm here to tell you that basic training can't hold a candle to what we Lymies must endure.
It's said that young people are hit hard by this, but also, that most young people--with proper treatment--bounce back pretty well.
It just must not seem like it at the moment.
We can recall the crap each and every one of us faced--and it is formidable.
In the meantime, how about this, "We are Lyme warriors!"
I'm sorry to inform you that what works for me, may not work for you. Cortef (for adrenals,) B12 shots and the like work, only if it's what you need: if you test low.
The best way through the utter, mind-numbing, disgusting chronic exhaustion of Lyme/TBI's is ... treatment. That's the known path.
Along the way, there are universal things that help our energy. Here's my vote:
1.) Good quality, mercury-free fish oil gelcaps. It's essential for all our body systems, having to fight this hideous illness. In addition, after about three months we have a bit more energy.
2.) Magnesium. Takes three months and then we get a bit more energy.
3.) A good multiple with 50 mg B-complex. B vitamins are crucial to energy.
These are basic! (According to: www.ilads.org, to the left menu, click "Treatment Guidelines" and that takes you to Dr. Burrascano's 33 pages of tips for 2005. See pages 25-27 for supplement information.)
I can personally vouch for the effectiveness of these.
Beyond that, to help with energy, my vote is for New Chapter brand cordyceps. It needs to be taken long-term. It also has A LOT of natural killer cell activity.
(However, don't take the tincture with flagyl as it is processed with alcohol! Yes, they have capsules.)
Having Lyme and TBI's are just plain miserable. There is a saying that's used here, but never without purpose, and it is this: Hang-in there, OK? Just do that please, allright?
There is not one thing that is fair about that.
Maybe LLMD's could prescibe that concept along with antibiotics! That's the trick. That's what it takes. Gotta hang-in there.
By the way, there is not a person on this board who hasn't come from the same "place" you are at now--or they are there right now!
You are never alone. It may seem a lot like that. Reaching out to others, the way you did, I think, must be secret number 2 to getting through Lyme and TBI's.
posted
Bernie when I felt like I was dying I had untreated babsia, I still feel dead, but at peace. The adrenal glands more or less die in us from chronic disease, and those glands take a very long time to recover. Thats why the 1918 flu killed so many, the adrenals run out of corisone and the body goes haywire and attacks itself, etc. Look into making darn sure you didnt miss ANY co-infections, maybe even treat anyway and see what happens, after all, most of these drugs are pretty safe. AND treat as if you have adrenal insuffenency. Or as Dr B says, Total pituritry axis failure. (adrenals are part of that system) Daytime fatigue and nap urgency and day night sleep shift is dead give away for babs. I had air hunger only in acute phase of babs 6 years ago, and it only returned very mildly on day one of zithromax, not everyone gets air hunger! And babs from the way I see it, is the worst of these as far as fatigue goes. I am not a doctor, this is what I did. I now am following the book which my non llmd who is a intergrative doctor the books adrenal fatigue, and fatiuged to fantastic, both great books, the first one really is best! follow it, good luck man. I feel your pain. I want to say, I am slowly coming out of my fatigue now, so stay with it, it gets better.
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daise
Unregistered
posted
Hi jamescase,
Are you seeing Dr. T? (Not an LLMD but equally as brilliant and he's Lyme-aware.)
I appreciated his books, which I found at the library, before I figured out that I have Lyme and company!
I take Fatigued To Fantastic Revitalizing Sleep Formula, by Enzymatic Therapy, which he developed.
Been taking it for three years! I dropped from 2 pills down to one pill, but may need to go back to 2 pills, as I just started Mepron and I'm a bit apprehensive as to how Mepron will affect me.
He believes getting a good nights sleep, deep, in 4th stage healing sleep, is essential for healing from chronic fatigue and fibro, and more.
posted
Hi - I get instant energy from taking any magnesium. Also, I took it a long time ago with malic acid(comes from apples), and the combo was super energizing. Hang in there. Everyone has given you excellent advice.
Also, I just checked under Support Groups/US/Wisconsin. There appears to be a support group in your city. It can be very helpful to go to one and meet people in your area.
Posts: 13116 | From San Francisco | Registered: May 2006
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daise
Unregistered
posted
Robin,
Right. Magnesium with malic acid. I took Source Naturals for 2 1/2 years.
I just finished taking magnesium (and my multiple) out of my tight supplement/meds schedule, due to pharmacy info warning about magnesium, aluminum, calcium (and zinc and iron) concerning cipro, which I recently switched to.
I need to fit-in mag, etc. 6 hours after and two hours before cipro. But I have to take thyroid hormone twice a day ... no iron for 4 hours, no calcium for 4 hours.
I just could not fit in magnesium!
But I have to. Gotta. I just started Mepron and have muscle and head pain problems as it is, so I need magnesium.
posted
Hang in there. It's really tough having lyme, going through treatment, and feeling like you're 90 when you're so young.
Lyme can have an effect on our hormones, so have them all checked, such as thyroid, adrenals, testosterone, cortisol. Depletion of these can cause crushing fatigue. Lyme can disrupt the entire endocrine system.
I'm very surprised that your doctor did not check this all out. In order to become functional again, so much more that antibiotics alone are needed to treat us.
So I'm wondering what else your doctor didn't check you out for. Have you been tested for other underlying infections, possibly mycoplasma, EBV, chlamydia pnuemoniae, candida, or babesia, bartonella, etc.?
Have you been tested for levels of vitamins and minerals in your body through a SPECTRACELL test or something similar? This might help determine your B12 levels, or other things you are low on.
Has your doctor recommended any supplements that help with creating energy in the body? Things that come to mind are glutathione support like NAC (N-acetyl cysteine), Alpha lipoic acid, whey protein, CO-Q-10, SAM-e and others.
Are you detoxifying while on antibiotics? Are you taking probiotics? What about herbal support?
How is your diet? No junk food, no sugar?
Well, you get the idea. I'm not trying to overwhelm you, only to point out that treating lyme is more than just getting antibiotics.
Again, I know how hard it is when it's almost impossible to function. Consider reading "The Lyme Disease Solution" which offers an integrated approach to treating lyme.
Wishing you a return to health, Hopeful4
Posts: 873 | From WA | Registered: Dec 2005
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daise
Unregistered
posted
Bernieb4,
You might check-out this out, just in case you have babs, but it's also important for overall Lyme:
I'm going to get my blood levels checked tomorrow (so long as the doc agrees to).
I am quite sure I have either a terrible case of babesia or bartonella, and if I had Lyme, I think it should be dead from the intense month of Doxy and Zith I did. The bart and babs, however, I expect to have a far greater struggle with.
Is it ok to treat both bartonella and babesia at the same time? For instance, say Rifampin, Minocycline, Mepron, and Artemisinin?
My llmd is quite smart regarding Lyme, though he firmly believes you have to treat the Lyme first. Maybe now he'll see that there definitely is a nasty co-infection. He never ordered tests for these because he said they were too expensive, and he believes in just trying out different abx combos...I don't know what the best route is, but I know those tests are about $200 a piece (cheapest).
I will ask him about B-12 inj., and I'll look into getting some cordyceps and cortef. The CO -Q10 is expensive stuff, so I'm avoiding that.
Thanks guys.
I've lived in WI for all 20 years of my life, but ironically, I got TBDed in southeastern Ohio on a backpacking adventure.
Posts: 98 | From WI | Registered: Feb 2008
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daise
Unregistered
posted
Bernieb4,
The LLMD's treat us according to what we need as individuals and by their own instincts.
If you've only had a month of treatment for Lyme--hey! My experience and that of others is that it takes a lot longer.
To check for cortisol levels, you need a 4-spit saliva test, with 4 samples taken at certain times of the day, all on the same day.
Your LLMD ought to have sample kits from a saliva testing company that he or she deems is good. A good book for adrenal fatigue is, Feeling Fat, Fuzzy or Frazzled, by Richard Shames MD and Karilee Shames RN PhD. It may be at your library.
B12 shots: If you're low by blood test, then you need it.
In addition, nerve problems (and do we ever have nerve problems) can be partly healed with methyl B12 shots. Those must be purchsed from certain compounding pharmacies and must be refrigerated (and shipped with an ice pack.)
B12 shots are intramuscular shots.
Have you had your thyroid checked? Your PCP or GP can do that, however ask for certain thyroid blood tests: TSH, Free T4 and Free T3, then show the results to your LLMD.
A good book on hypothyroidism is, Living Well With Hypothyroidism, 2005 Edition, by Mary J. Shomon. Try your library.
I say that, because conventional doctors are often stubborn about adequately treating hypothyroidism, and what the test range is from most blood labs, is different from what the new range is.
The "new range" was set 4 years ago! Lyme often attacks the thyroid.
You can get tested down the line, as well, when these things may show-up.
Your PCP or GP may be able to also do a blood test to check for vitamin deficiencies (i.e. B12, magnesium, etc) which you can then show to your LLMD.
I am quite sure I have either a terrible case of babesia or bartonella
My llmd is quite smart regarding Lyme, though he firmly believes you have to treat the Lyme first.
I'm a little bit confused, as I have heard many say their LLMD likes to treat any coinfections first. Is there a wide range of opinion on the order of treating mulitiple infections?
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
My doc believes to treat the Lyme and then see what co infections pop up.
Thats what happened to me. We did 8 months of Lyme treatment then 4 months for Babesia, 1 month for Bart, now back to Lyme treatment to get the CD57 numbers up.
Everyone is different.
-------------------- 26 months of treatment. And counting....... Posts: 298 | From Northeast Kansas | Registered: Oct 2006
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daise
Unregistered
posted
Hi Robin,
Yes, many would herx so badly it could damage their brains. The order of antibiotics is individual to the patient, and individual to the orientation of the LLMD.
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