LymeNet Flash: I'm getting scared!

This is topic I'm getting scared! in forum Medical Questions at LymeNet Flash.

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Posted by jobrien (Member # 41253) on :

I was recently diagnosed with Lyme after a 6 year bout to lots of doctors. I'm reading a lot about it but I still have one question and was hoping that someone out there could help me. Since this is now chronic, I don't know if I'll ever improve, what symptoms will always remain and if more will be coming since the antibiotics can't kill the infection at a quick enough pace. What REALLY scares me is all the neurological malfunction that goes on- if I'm tired I can take a nap, if I feel achey, I can take Celebrex, but what do I do for my brain? I am really freaking out about what will happen down this long road. I would REALLY appreciate any advice you can give me.

Posted by mlkeen (Member # 1260) on :

Wlecome to lymenet-

Some one will come a long and post the links for you.

Your question is a valid concern, one I had too. Since I have found all my brain cells( I think) and they are healing and functioning better and sometimes even well I can tell you that with good treastment full or near full recovery is possible.

I have to get off now, but lots have been in the sam eplace as you are now and have gotten better.

Mel

Help with meds. http://www.freemedicineprogram.com/

------------------
Do unto others as you would have them do unto you.

Posted by Aniek (Member # 5374) on :

Hello and welcome to Lymenet.

I understand your fears. I was just diagnosed this past March. We believe I have been infected for 18 years.

When I first came to Lymenet, and first started reading about Lyme, I was terrified. But then I realized, we are all different.

Our bodies react differently. We have different co-infections. And we have different symptoms.

I have had no negative impact on my cognitive ability. I was infected at age 12 and have grades and standardized test scores (including the LSAT from 5 months ago) that prove to me my cognitive function is fine.

Posted by TheCrimeOfLyme (Member # 4019) on :

No one can tell you what symptoms of yours are going to stay, and which ones are going to go.

I can tell you this much though; there are poeople here that have have lyme for 30, 40 years even and are FINE now. Do NOT let the word "chronic" scare you. I sure as heck didnt.

If you are not seeing a LLMD, then I would believe you have room to worry. What is your dosage of medication? Are you seeing a LLMD? Lyme literate medical doctor-

and no, not just any schmuck that can look and say you have it. I mean A SPECIALIST.

Posted by suej (Member # 816) on :

Hi Jobrien,
I know when I was first diagnosed this web site scared the #$%# out of me. I stopped reading it.

But... I came back because this is a place where you can get a lot of valuable information.

I didn't have a good LLMD in the beginning, but I didn't know any better.

If I had been reading this site I think I would have realized sooner that perhaps another LLMD would treat more aggressively and possibly get better results.

So I lapsed into that cognitive fog that you here so much about. I was at rock bottom. I was worried that I couldn't work anymore

But with proper treatment I got better. Don't get me wrong it's still a daily battle but at least my LLMD and I can tell when the treatment protocol needs to be tweaked.

So I guess my point is to let you know although it's scary there is hope

but you need to be proactive and seek aggressive treatment and it's important to keep an eye on sites like this to stay abreast of anything new that comes along.

Good luck to you
Sue

Posted by jobrien (Member # 41253) on :

quote:
Originally posted by cave76:
Jo---- you're scared and that's *normal* at times. But don't think that you can't get better---- your brain too!
As long as you get treatment that's long enough and aggressive enough. But, what's *Iong enough* and what's *aggressive enough*?
Thanks Cave for your response. What's scary is not knowing what you're saying or doing at times- the brain fog. I'm a teacher and I've said things to the kids without even knowing it- given wrong instructions, while throwing away my license, money, etc. I can easily get disoriented and have to ask my 15 year old for directions- sometimes I just want to scream or cry. I'm on Adoxa 400 mg., Celebrex 800 mg, Zoloft and Zanaflex- a handful of stuff everyday. This is tough but I am relieved that now I have a name for it. I'm also feeling very anxious- I guess part of all of this too. Any advice would be terrific!
No one can tell you how YOU will respond, only how they responded; and it's different for each one of us.
But your brain/mind will get better. If mine got better----then anyone's can. Mine had seriously imploded, so I doubt if you're that bad--- at least I hope not.
I sense that you want reassurance and that's what you'll get here. Each in our own way. Keep reading.
If you can give us more specifics, that would help also----try to describe what about your *brain* function is scaring you, for instance.
Keep reading, keep asking questions. There's no such thing as too many questions here. Or a *dumb* one.
cave76

Posted by liz28 on :

Although supplements are nowhere near a cure, here's some stuff you can take to help with neuro symptoms and inflammation This is just my list--if you look through previous Lymenet posts, you will find tons more ideas to choose from. With the exception of saventaro, which can cause a serious herx, these should not give you problems if you start out with low doses at first.

phosphatidylcholine 1500 mg/day
CoQ10 (as long as you're not on mepron) 60-100 mg/day (for energy)
saventaro TOA-free cat's claw (don't get any cheap stuff with TOAs in the ingredients)
alpha lipoic acid
N-acetyl cysteine (NAC) 1000-2000 mg/day (for energy, liver detox and heavy metal removal)
coptis 3x/day (Chinese herb)
grapeseed extract
Immunocal
H. cordata Thunb (Chinese herb)
stinky garlic (better known on this board as allicin)
theanine (for anxiety and concentration)
cordyceps (for energy)
flaxseed oil (for concentration)
sublingual vitamin B12 (instant energy)
megadoses of multivitamins that include chelated zinc and magnesium
"green" powder with spirulina, algae, etc.

Since all this costs a bundle, if you do try any, give yourself a break and just buy a week's worth at first, from a high quality brand. Unfortunately, brand quality really does seem to make a difference. I am still struggling to find a cure, but these definitely brought back some functioning, and with functioning comes hope, our most precious resource.

Posted by jobrien (Member # 41253) on :

You can never lose hope-thanks!

quote:
Originally posted by liz28:
Although supplements are nowhere near a cure, here's some stuff you can take to help with neuro symptoms and inflammation This is just my list--if you look through previous Lymenet posts, you will find tons more ideas to choose from. With the exception of saventaro, which can cause a serious herx, these should not give you problems if you start out with low doses at first.
phosphatidylcholine 1500 mg/day
CoQ10 (as long as you're not on mepron) 60-100 mg/day (for energy)
saventaro TOA-free cat's claw (don't get any cheap stuff with TOAs in the ingredients)
alpha lipoic acid
N-acetyl cysteine (NAC) 1000-2000 mg/day (for energy, liver detox and heavy metal removal)
coptis 3x/day (Chinese herb)
grapeseed extract
Immunocal
H. cordata Thunb (Chinese herb)
stinky garlic (better known on this board as allicin)
theanine (for anxiety and concentration)
cordyceps (for energy)
flaxseed oil (for concentration)
sublingual vitamin B12 (instant energy)
megadoses of multivitamins that include chelated zinc and magnesium
"green" powder with spirulina, algae, etc.
Since all this costs a bundle, if you do try any, give yourself a break and just buy a week's worth at first, from a high quality brand. Unfortunately, brand quality really does seem to make a difference. I am still struggling to find a cure, but these definitely brought back some functioning, and with functioning comes hope, our most precious resource.

Posted by ebbyban (Member # 842) on :

jobrien

Mine was mostly brain stuff until the rest of my body caught up and began to suffer. I was on abx for 1-1/2 years and felt pretty good than I went to an ND to get my body back in balance and was feeling better and better. I have been off of abx for about 1-1/2 years and I can honestly tell you that as time goes by I am healing more and more. For example last summer I was like WOW!! I feel great but this summer I'm like WOW! I feel even better, normal like I did many years ago. I guess being sick for so long you really can't remember the normal and I find it amazing that as more time passes I keep feeling better. Don't get me wrong I will have a day when I crash or something is off but it usually only lasts a day (and is nothing even close to when I was sick) and now more time passes between episodes. It use to be about every 2 weeks now I can go 6 weeks or more. A friend of mine says the same happens to her. My LLMD also said to expect this. Hope this helps!

Stay Strong

Posted by DiffyQue (Member # 3317) on :

Hi JoBrien,

Welcome to lymenet. In lyme there can be the paradoxical effect(s) opposite one would expect when it comes to certain dietary supplements,alone, lyme disease, and, perhaps with other tick-borne illnesses; in particularly, large doses of: vitamin C, B6, B2, and,perhaps Zinc.
Please see writings of Tom Grier,microbiologist, et. al. in past issues of various lyme news-letters, one being "SpotLight on Lyme"

Sources to search:
Search lymenet Archives for 2000, and after, perhaps before, as well; SpotlightOnLyme; LymeTimes. This should be a good start.

Some dietary supplements help, namely:
Magnesium,B3(niacin not its other form, niacinamide) are helpful in reducing the quantities of the natural neurotoxin"Quinolinic acid" that B2, Vit.C, and B6 cause,via keet-infection, brain macrophages, and perhaps other macrophages to pump out. Beware of too much B3, w/rt heart and liver function.

Good Luck,

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