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Lyme Disease
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Posted 8/28/2013 2:01 AM (GMT 0)
Ive been treating my Lyme (which I must have had for 6 years or more) for the last 6 months. I did 6 weeks doxy, 8 weeks clarithromycin, 2 weeks IV Rocephin, now Im on a "plan" of amoxicillin, azrithromycin and flagyl for 2.5 months now plus on my 3rd month of Mepron.
I am still extremely sick, house bound, dropped out of grad school, and my worst complaint is a non stop migraine that lands me in the ER all the time and is resistant to most medications, because its most likely due to these bugs...
I have tried detox with teas, baths, charcoal, probiotics ect with no noticable help.
I am really at the end of my rope with this stupid headache! I am too sick to leave the house. I havent been to a restaurant to eat in over a year, its been 2 years since i had a friend come to visit me... Im really really sick!
There are some improvements tho in this new 'plan' i suppose, my constant nightmares have gone recently, i dont sweat or have hot flashes anymore, my feet soles arent so sore, but this headache is KILLING ME!
What else can I do?
Should I get that B vitamin thing for MTHFR gene mutation ppl? Maybe Im not detoxing cause of that?
Can I buy that or is it RX?
What about the cholesterol medication that supposedly detoxes? I know thats RX...
Should I add in something else? I am waiting for more artemisinin like LLMD told me to (take 3 days then 10 off)...
Anyone please offer help? Im drowning..
Natalie
Posted 8/28/2013 6:07 AM (GMT 0)

Hi Natalie,

These headaches and migraine attacks are horrible, I have them literally every single day, all day long. They are driving me up the wall. I have to take pain medication to go to sleep, it's so intense it prevents me from sleeping... I get more and more migraine aura's. Had one yesterday, and another one this morning at 4 am. I take aspirin with caffeine for the migraine, but it's not enough. And if it's a headache I need to take tramadol to get relief, I don't want to get dependant on it.

I'm starting on Topamax (Topiramate) this week, I think tomorrow or Friday. I will let you know if it helps. It does a great deal for my sister who has Bartonella (and probably Lyme). I'll keep you posted on this Natalie, I perfectly understand how hard these constant headaches are.

Hold on...

MarieLS

Posted 8/28/2013 11:22 AM (GMT 0)
I feel for both of you. I only get the head aches and ear ringing w/head pressure when I'm at my worst.
I just finished being there for the last couple of months.
I did up my magniesium, not sure if that has helped the headaches,, but its helped the fatiuge and nerve problems.
Posted 8/28/2013 7:20 PM (GMT 0)
oh ive done all the preventative meds, topomax, depakote, cymbalta, amitriptyline ect ect ect ect... ive tried every pain med from imitrex to methadone and fentynal patch.
my question is how to get this lyme n co treatment to WORK to get RID of and CURE this headache!
im to the point where im begging my docs to get permanent electrodes to electrocute my brain...
but if this is just the lyme n co, how the hell do i get past this part???
how long should it take?
what am I missing??
Posted 8/29/2013 12:38 AM (GMT 0)
Have you thought of maybe trying the Erchonia Low Level Laser? Ever since Toby used it he has slowly been getting better. I would love to know if others on this site have benefited from it.
Posted 8/29/2013 6:48 AM (GMT 0)
I periodically get these headaches and what I finally found out after one that went on for a month, they were not actually migraines but neurological headaches caused by Lyme or one of the co-infections having reached certain nerves in the brain. My Llmd is a neurologist & headache specialist & she ordered me a combo of Toradol & Ativan which miraculously provided relief for a night. This was amazing as I was seriously tempted to jab an ice pick into my temple I was so out of my mind with pain for so long! (Hence the name "suicide headaches"). They can also be caused by the herpes virus, basically like a cold sore on your brain.

I still get them but not to such a degree, treatment is the only way to CURE them, but in the meantime I have found that 300-600 mg of magnesium can do wonders for these horrible headaches! It takes the edge off and keeps it from getting worse, but on those couple times a month when the magnesium doesn't cut it, I use the toradol + ativan combo to keep me from going back to the hospital where they would no doubt try to treat me for a migraine!

Anyway I hope that's helpful...I really feel for you! Hang in there.
Posted 8/29/2013 7:03 PM (GMT 0)
Those headaches can also be from the build up of ammonia/toxins either from the infections themselves or from your body just not being able to keep up with the detoxing that is necessary.

This could be a possibility for you since nothing else seems to be working - maybe you should check into this being the reason? Just a thought. :-)
Posted 8/29/2013 10:25 PM (GMT 0)
how can i get those toxins out?

torodol sometimes helps a little only in IV form, so been there, done that. very temporary.
Posted 8/29/2013 10:35 PM (GMT 0)
Japanese Knotweed helps with brain inflammation.

Yucca Root pulls ammonia out of the body.

Magnesium, Zinc, Molybdenum, Methyl-B12 & Methyl-Folate help the body detox by stimulating methylation and supporting transulfuration. Caution: Sometimes stimulating methylation makes things worse before things get better...best to start with TINY doses of Methyl-Folate.

Also recommend P5P (the active form of Vitamin B6).

Methyl-Folate is available online/over-the-counter... Thorne Research makes one (L-MTHF), as do many other companies.

If you get a flare of symptoms from taking Methyl-Folate, take Niacin or Niacinamide to help offset the symptoms.

Are you eating gluten-free? Gluten is known to trigger neurological issues for many, even in the absence of true Celiac Disease, and Lyme is known to trigger gluten sensitivity.

Posted 8/30/2013 12:13 PM (GMT 0)
Where is the head pain and is it more like a headache or head pressure?
Posted 9/10/2013 9:49 PM (GMT 0)
mostly the top or middle of my brain. it can go all over. it can make my eyeballs hurt, make me vomit, light hurts, sounds hurt, sometimes it stabs but mostly just pain, sometimes feel throbbing. i feel like my brain is floating in poison or someone injected poison into the middle of my brain.
Im going to get the B vitamins and yucca root and give it a try. also starting back on artemisinin pulse. hope i dont end up in the hospital again this time....
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