djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
i keep strict track of my protocol because i hate flare ups and i especially hate bad head pressure and head burning.
these are the only two things i have changed recently, could either one make head pressure bad?
it was like non existant and now its pretty bad..
1- i started melatonin @ night. 1-3 mg, i know this can "detox" the brain, so could this do it?
2- i tried artemenisin a few times, and didnt really see a reaction to it. total 500 mg over 3 days i guess. could it have made babs flare?
any thoughts?
thanks
derek
ps- ive treated babs b4 w mepron and zith for 2 months, and now im on bart. i was doing good, biaxin and levaquin, and this came roaring back out of the blue, maybe from the melatonin, maybe from the art....i duno.
pps- chills seem to be setting in too, along with the increased head pain and pressure. is that another clue?
please help me here guys
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
Sorry to hear of the set back. Have you been under any added stress? this can cause you a flair up.
Blessings,
Julia
-------------------- Please consult your LLMD before making any changes to your treatment regimen. Posts: 641 | From NJ, USA | Registered: Oct 2001
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
hey julia
yeah a lot of pressure during the holiday/s with the family.
i am still learning how to juggle it all
this could be from the stress related to that, i am unsure. i think the most frustrating thing about lyme and assoc disease is not knowing most of the time what is affecting us.
betty, thanks, i read and re read all the links about head pressure, i know many people suffer with it and theres no real tx for it other than diamox and lyme therapy, hbot, etc.. thanks for repsonding !
thanks for your insight guys, merry chirstmas
humbly
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
How is your blood pressure? Is it high? when did you last have it checked?
warmly,
Julia
-------------------- Please consult your LLMD before making any changes to your treatment regimen. Posts: 641 | From NJ, USA | Registered: Oct 2001
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
actually, i havent checked it in some time.
im sure it has been high due to all the anxiety and stress ive been experiencing.
i feel somewhat better now, although i am unsure what my bp is. i dont even know where the machine is i used before.
do you think it would be a good idea to check it regularly?
i know my dad has lyme and is on blood pressure medication as a result. his bp also a result of lyme and stress i think....
ive been thinking about trying benicar soon in conjunction with the marhsall protocol.
what are your thoughts on benicar?
thanks
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
I do not have any experience with benicar. I use garlic concentrated tablets to keep mine in check. It is also antimicrobial so it has added benefits...
-------------------- Please consult your LLMD before making any changes to your treatment regimen. Posts: 641 | From NJ, USA | Registered: Oct 2001
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
i supplement with garlic daily, 1000 mg.
its been about 3 months that ive been doing this though, so i guess my body has built a tolerance to it.
i could increase the dose i guess.
thats a thought..
i know there are some threads where people take 1-10 grams a day in an effort to think their blood, increase immune function, and relieve pressure.
i know a herx is possible if i up the dose, but maybe thats a good idea.
thanks again
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
hey guys-
i still am unsure as to what to attribute the unremitting head pressure and pain, but some GOOD NEWS....
BENADRYL seems to temporaily relieve the pressure in a way that no pain med has ever done. although its not getting to the root core of the problem, its nice to have a break for those of you with this and you know what i mean
merry chistmas all...
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
benicar, i was on it; didn't help me at all.
wasn't on MP treatment but joiined that board when i was diagnosed; both of us started same time .... board and me.
trevor marshall is a bully and acts that way on his board; rudest man i've ever dealt with.
private messages over there are read by HIM; EVERY ONE TO ANYONE!
be sure to do a search on this board using procedure i explained earlier but this time for
marshall protocol; you'll come across many and up to 100 replies!
they have changed protocol since i was diagnosed; too many folks developed heart problems. good luck whatever way you go..
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
fin-
thanks for all the info. wow. i am so slow and confused today i am having trouble processing everything you said..
so you think is a possability the artemesisn is causing this head pain? i think so too.
my other thought is bart became tx resistant to levaquin and now i need maybe rifampim or something..
i am not familiar with dysautonomias. im not sure i understand what it is. it seems to be an unbalanced or "off" cns, which, is common to all lyme patients? what i am i missing?
is kind of like a label for your cns is messed up?
im just not comprehending today...
no, i have not been evaluated for autonomic stuff. im looking at that website now...
seems its just another label for one of your systems doesnt work right, which, with lyme patients, none of them seem to.
if dysaauto makes the pressure worse, etc, is there a tx out there for it? im just unsure of what youre saying.
thanks, i appreciate the feedback.
and as far as the marshall tx goes, i duno either. mixed camps everywhere. so frustrating.
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
Artemisinin gives me SEVERE head pressure and burning. it *may* be that.
After I stop taking it and intentionally blowing my head off, the pain stops and I feel clearer than I have in a long time.
Then repeat, ad nausem. Artemisinin I CANNOT take on a consistent basis. No way!
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
thanks so much crime, i think you may be right.
how long does it take for you usually to see a rx?
then, how many does normally do u need to take a break from it to experience relief?
it seems my initial rx to the art (if thats what this is) started maybe a week into it, although i took 100 mg every other night for the first few nights so maybe it took some time to build in my system?
thank you!
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
Derek,
One artemisinin hits me like a train. I had read that it crosses the blood brain barrier quite easily. It also treats a host of other infections and yeast.
They made artemisinin into a drug because they realize it worked. Its name is CoArthemor or something LIKE that.
But yes, Artemisinin and I do not get along very well when I take it. It is horrendous to me.
I get mean, emotional, completely irrational My head fills like it is going to blow off with the pressure And I swear everything from the neck up burns, including my face and scalp.
It truly does do a doozy on me.
The last time I took it, I took three 100 mg artemisinin for just two days. I had a SEVERE SEVERE unrelenting MIGRAINE from hades for three days straight. I simply couldn't move.
You couldn't even look at me either- or I'd rip your head off, it was THAT bad.
Some people just can't take that stuff without taking breaks.
it took three days for just two pills to clear in me. Then I did GREAT.
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
thanks i think youre right did you also get some old sx return like im very hot but cold at the same time? its weird. heart racing etc, anxiety/ im goin to stop and see what happens. i went from functioning at 50-60% to practically bed ridden right now. scary
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
I have pretty bad head pressure as well. It's just as bad as the headaches I get, if not worse. There is relaxants you can take that might make you feel better. But as almost every other symptom, head pressure comes with Lyme disease.
Posts: 370 | From NJ | Registered: Dec 2007
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posted
You may be having CNS problems from either the artemisinin or the Levaquin, even if you stopped either awhile ago. Both are risky.
If you don't get relief soon ask your doctor about low dose Lyrica - start low. It may help.
-------------------- Paula Carnes Posts: 23 | From Las Vegas, NV | Registered: Jan 2007
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
thanks everyone for all your input.
i stopped the art 2 days ago, and what do u know?
the head is feeling a bit better now
notwithstanding that this was the most horrific reaction/herx/die off i have ever had to a med, but, it definitley was getting to something.
im feeling better overall now, not as god as b4 this flare/setback, but i am coming out of it.
im unsure still if it is due to babs, bart, lyme, or them all, and i guess i wont know, just the way lyme is. sucks.
again, thanks for all your input.
oh, one more thing. one thing that seems to help the pressure sometimes is to tie a bandana around your forehead tightly and it either decreaes the pressure or distracts me enough not to be so disabled from it.
ill keep you all updated on my next move/progress.
given the huge response i had to levaquin, i am inclined to try rifampin next, although i am unsure what exactly i am dealing with.
the sick part of all this is that my cd 57 is relatively normal and my immune system is "normal" which is indicitive of a chronic co infection because of the severe cns sx i still experience...
which one is the question though? i had such a strong rx to the artemenisin that babs is definitley a possability, and im sure there are a host of other organisms we dont even yet know about.
dr b's video about bart is very informative, and i believe, like he said, we just dont know. its kind of a endless relentless game of treating until improvement is seen, whether its with abx or alternative, just as long as improvement is seen...
any more advice would be appreciated, thanks again.
humbly
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
also, fin, could you elaborate on how you manually manipulate your son's sleep cycle?
i kinda get the idea of how it works, but i bearly can sleep w the use of xanax and ambien and other meds, so i dont see how i could use this, although it seems like it would be a great idea. (any way to re train my body to be human is welcome)
im just thinking it out and i understand the delayed sleep time by 4 hrs everyday but that means that some days during that week your son or whomever is sleeping in the middle of the day or "going to bed" at times like 8 am.
i just dont see how that would work for me, how does it work for him? is he able to just lie down and knock out?
one of my biggest issues is the inability to nap and sleep, so its hard to just knock out voluntarily anymore.
any thoughts or suggestions would be appreciated. thanks so much
humbly
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
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