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Old 10-26-2008, 01:05 AM   #1
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What symptoms are you currently dealing with?

I have posted my symptoms in my original thread here entitled "could this be lyme?"..

What are you guys dealing with on a daily basis?

Anyone else have the constant head pressure?

 
Old 10-26-2008, 06:15 AM   #2
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Re: What symptoms are you currently dealing with?

Hi Bill head pressure is not uncommon with us lymies. I had it but having had treatment for 9 years I no longer have that symptom.

Your not alone in this. I have read on many lyme boards of people having this symptom.

Are you on any treatment protocol?

Jodie

 
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Old 10-26-2008, 10:45 AM   #3
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Re: What symptoms are you currently dealing with?

Hi Bill,

I have constant, often unbearable head pressure. it's definitely one of the symptoms. My doc said sometimes it can be from the Babesiosis co-infection. Mine did start going away more often (though only for a couple hours a day) after we started treating the Babs. So I would definitely look at your coinfections, too.

Best of luck.

 
Old 10-27-2008, 12:57 AM   #4
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Re: What symptoms are you currently dealing with?

Thanks for the info guys.

No I'm not on any treatment protocol yet. I need to get insurance first...

Right now I'm also in the process of exploring Chiari malformation, as this can also cause head pressure, and the other neurological problems I'm having.

I have a strange thing where after having a bowel movement, my symptoms (esp. head pressure and fine-motor control and eye movement) get worse for a couple days straight. I was informed that the straining associated with bowel movements, and physical exertion in general, can make Chiari "act up."

So this is a major concern for me, and I'm going to try and rule it out first, if I can. It's looking like I may not be able to rule it out...

 
Old 10-27-2008, 01:07 AM   #5
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Re: What symptoms are you currently dealing with?

Quote:
Originally Posted by ktinbk View Post
Hi Bill,

I have constant, often unbearable head pressure. it's definitely one of the symptoms. My doc said sometimes it can be from the Babesiosis co-infection. Mine did start going away more often (though only for a couple hours a day) after we started treating the Babs. So I would definitely look at your coinfections, too.

Best of luck.
I looked up Babesiosis on the net and it's said that the symptoms are similar to malaria; in other words in most cases would know you have it.

Apparently it elevates bilirubin levels and other signs that are checked for in standard blood tests (which I had 6 months ago, and the doctor spotted no abnormalities.)

Milder cases are said to cause anemia. What are some signs of anemia?

 
Old 10-27-2008, 03:46 PM   #6
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Re: What symptoms are you currently dealing with?

Hey Bill,

I definitely believe that. In my case, I had it for years before it was diagnosed. I went through blood test after blood test after blood test, and all were normal. We only found it after we did a blood smear through a specialty lab. That being said, I'm definitely not disagreeing that it could be something else and that you should look into every option you feel you need to look into. But these little critters can be tricky... In my case, I've learned to never underestimate how deceitful they can be.

kt

 
Old 11-02-2008, 08:27 PM   #7
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Re: What symptoms are you currently dealing with?

yes i have constant pressure in my head and like knives are stabbing me in the back of my eyes. all of my sx really increased since i started ax treatment. everything shot up to a 10

 
Old 11-03-2008, 11:18 AM   #8
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Re: What symptoms are you currently dealing with?

hi, i'm new here. i thought i might have lymes when i was describing my symptoms to my friend who took her daughter to a LLMD. her daughter tested negative but after reading the symptoms herself she tested postive for lymes and erlichiosis. scary. anyway both my dogs have lymes so i thought i should get tested. i have all but three of the most severe symptoms. i've been bitten by ticks many times and live in a deer infested farm like area in NJ. I got my lymes test and am waiting for the results and go for my second appt. on thursday. I definately feel like i have it but am anxious that i might be negative and then i won't know what i have. I never had a definitive moment where i can pin point the onset of my symtoms. when i was in 8th grade or so i had a scare with mono. they tested me for everything and i always came up negative but i was always symtomatic. i just remember going for blood test after blood test.

In high school i was always really active but i would always fall to sore throats and just general tiredness. My real symptoms started in college that i can really pin point. my junior year i suffered a lot for gastrointestinal issues but nothing major at the doctors. I had a grand mal seizure. I had major testing done and all came back negative for bleeding tumors you name it. i was totally fine but had a grand mall seizure for no reason. i was under for at least 5 minutes, lost all control of my bladder. really really horrible. a couple months later, i thought i had a uti which was so severe but i tested 3 times and all three times i was negative. in the mean time my doc had put me on macrobid, two rounds with no relief. then i went on dioxycycline and recovered from symptoms. i've had 20lbs of weightloss and then 40-45 of weight gain in the past 3 years. i've grown increasingly tired and irritable. i've had 4 sinus infections which require heavy duty abx like 750 mg of levaquin. after taking that dose i experienced joint pain in my finger. (it actually hurts to type this). knees, heart pain (stabbing), acid reflux, and loss of feeling in my toes and feet then bad pain. also the under sides of my arms are super super sensative. if i lean on them in any way i experience bad pain in them for a couple of minutes after releasing the pressure. also i have absolutely no sex drive. that was like a light switch, one day i had it the next it was gone, i'm 26 so i know this is not normal. at times i can't hear. i lose total concentration and track of my sentances. and i'm a super sharp person. so this is really unlike me. my eye sight stinks and getting worse. i have really bad fatigue in my muscles. i've been trying to lose weight but i can only lose a couple lbs then i gain even more. when i drink alcohol i feel like someone drugged me the next day i can't even wake myself up. some weeks are worse than others. right now i feel horrible.

most of the time i feel really like a crazy hypo. my husband has been trying to tell me to see someone for the past couple of years and now i am finally. i'm just afraid i'll be negative and at square one again . . .

 
Old 11-03-2008, 03:31 PM   #9
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Re: What symptoms are you currently dealing with?

Hi Saxton,

Have you heard of Herxing? That's normal and actually a good sign if you're feeling worse when you first start your abx. It's usually a sign of die-off, so right now the dead lyme are releasing toxins and making you feel worse. I always feel a ton better after a herx, though the first couple months were rough in general. Hang in there and hope you find relief soon.

 
Old 11-03-2008, 03:36 PM   #10
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Re: What symptoms are you currently dealing with?

Hi Amm4711 -

Even if you're negative, it doesn't mean you don't have Lyme disease. Lyme is a clinical diagnosis, not one based on test results, although a positive does go a long way. Is your doc an LLMD? And do you know what lab they're doing your bloodwork through? You should get it done through Igenex in Palo Alto, CA. They're the most reliable for Lyme tests. If you haven't had it done through them yet, you can look them up and have them send you a free kit. Also, it really is imperative that you see an LLMD who can diagnose you based on symptoms and different tests that a typical doctor wouldn't run. If you need recommendations, there's a thread at the top of this board or you can post your location and ask others for advice.

Hope that helps. Your symptoms sound very much like Lyme to me based on what I and others I know have experienced.

KT

 
Old 11-04-2008, 11:29 AM   #11
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Re: What symptoms are you currently dealing with?

Thanks Ktinbk!

Yeah my doc is an LLMD and i've heard really great reviews about him, Dr. Streit in Howell NJ. I guess it would just make me feel better to have that positive. What is interesting is that I had my blood test and 1st exam 3 weeks ago and i felt pretty good then. Since then though i've gotten progressively worse. today i could barely get out of bed. my knees and hands are killing me. i don't take anything over the counter bc i just don't like to but it never really helps anyway. today i also drove around in circles while running my errands. i feel like i'm always on auto pilot instead of going where i am supposed to be. am i ever going to be normal again. it's just affecting every part of my life in such a bad way. i feel like i'm constantly trying to remember myself before all these symptoms and i feel like that talking heads song. how did i get here? lol.

My test comes back from Igenex in CA, and i see it on Thurs. Also are panic attacks a symptom. when i had trouble with my sinuses, i went to an ENT. so he stuck that camera in my nose, which normally would not have made me pass out, but i got so freaked out that i almost passed out three times and my husband had to pick me up. i felt horrible the rest of the day. i've been taking 2 grams of Vitamin c a day. i heard that might help but i'm afraid of the abx i might have to take. i have a really bad reaction to abx with yeast. when i was on dioxycycline i broke out in a yi for 7 months! i don't want to go through that again. i've been prepping with acidophilus also. i'm afraid of herxing also. have you heard anything about olive leaf extract, my LLMD told me to start taking it. m

 
Old 11-04-2008, 02:48 PM   #12
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Re: What symptoms are you currently dealing with?

Hi amm4711 -

You should definitely talk to your doctor about supplements. I see Dr. Raxlen in NYC, and he has me on a bunch of supplements- vitamin C, EFA, magnesium, colloidal silver, L-carntine, elderberry extract, intestinal permeability formula. And I take milk thistle for my liver in b/w abx. I've noticed every time I stop them even for a week my symptoms get worse. It can seem like a lot, especially to those of us who normally don't like to medicate, but I'm telling you... they are life savers.

You can also talk to your doc about Diflucan for yeast. I have really bad problems with that as well. Honestly, I had a constant candida infection for like nearly 10 years before my LLMD caught it and gave me diflucan. my insurance doesn't cover more than 60 pills, so I don't take it often. But you should definitely have it on hand for when things get bad.

Don't be afraid of herxing. I say that as someone who's deathly afraid of my own herxes. It's tough while you're going through it, and it's really easy to freak out. But honestly they happen for a reason and you WILL feel better afterwards. Just talk to your doc beforehand and see if you can call/email while you're herxing to check in and make sure things are normal. It also helps to get a general practitioner who will respect your LLMD's protocol and who can test things like your blood count, liver, kidney, etc, periodically as you go to assure you that everything's OK. Mine's been awesome about that. I see her during every single herx and I always leave feeling a million times better.

And yes... I had panic attacks for years in college, which I now know was most definitely from Lyme. I still get anxiety attacks frequently, especially when I'm herxing. But I get them less and less as I go. Hang in there. There are a lot of people here who can answer your questions, so never hesitate to come here for support.

 
Old 11-04-2008, 06:55 PM   #13
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Re: What symptoms are you currently dealing with?

Hello Bill
One of my major symptoms is chronic headaches, and head pressure is a constant pain I experience. Most days it is always present, looming with an annoying pain and some days and numerous times a day can be searing and stabbing. My right eye also shows signs of broken blood vessels, swollen and i have floaters all over my vision. This is signs of nuero and nerve problems.
Good luck

 
Old 11-05-2008, 04:06 PM   #14
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Re: What symptoms are you currently dealing with?

Quote:
Originally Posted by ktinbk View Post
Hi amm4711 -

You should definitely talk to your doctor about supplements. I see Dr. Raxlen in NYC, and he has me on a bunch of supplements- vitamin C, EFA, magnesium, colloidal silver, L-carntine, elderberry extract, intestinal permeability formula. And I take milk thistle for my liver in b/w abx. I've noticed every time I stop them even for a week my symptoms get worse. It can seem like a lot, especially to those of us who normally don't like to medicate, but I'm telling you... they are life savers.

You can also talk to your doc about Diflucan for yeast. I have really bad problems with that as well. Honestly, I had a constant candida infection for like nearly 10 years before my LLMD caught it and gave me diflucan. my insurance doesn't cover more than 60 pills, so I don't take it often. But you should definitely have it on hand for when things get bad.

Don't be afraid of herxing. I say that as someone who's deathly afraid of my own herxes. It's tough while you're going through it, and it's really easy to freak out. But honestly they happen for a reason and you WILL feel better afterwards. Just talk to your doc beforehand and see if you can call/email while you're herxing to check in and make sure things are normal. It also helps to get a general practitioner who will respect your LLMD's protocol and who can test things like your blood count, liver, kidney, etc, periodically as you go to assure you that everything's OK. Mine's been awesome about that. I see her during every single herx and I always leave feeling a million times better.

And yes... I had panic attacks for years in college, which I now know was most definitely from Lyme. I still get anxiety attacks frequently, especially when I'm herxing. But I get them less and less as I go. Hang in there. There are a lot of people here who can answer your questions, so never hesitate to come here for support.
i really just thought i was being crazy for a while bc my symptoms seemed totally unrelated. my husband would beg me to go to the doc but i would feel like what am i going to tell them, i'm a hypo whose whole body hurts. who had 1 grand mal seizure and then never has one again. i feel really really bad these days, i don't know if its a reaction to the supplements i'm on now or just lymes acting up. do you know anything about that. i heard it reproduces every 3 weeks to a month. is it really necessary to go to a GP while herxing or taking abx. the reason is i never really go to the doc and i just went straight to an LLMD when i put it all together with the lymes. my LLMD happens to be a internist also, so maybe that helps. my joints are super achy. do you ever get depressed or down on yourself. between the weight gain i have had really low self esteem, which is so odd for me bc i'm really confident and completely the opposite my whole life. lately it's been harder to bounce back from that. do you know anything about body fat and lyme's disease. i heard that it try to hide in fat cells. i really want to work out but have no energy. how long were you on abx before you started to feel normal again??? so i get results tomorrow from igenex, i hope they are positive so that i can just treat this already and then everyone won't think i'm so damn crazy!!!

 
Old 11-05-2008, 04:19 PM   #15
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Re: What symptoms are you currently dealing with?

oh do any other women get this symptom:

at times i feel like a surge of hormone in my body usually lasts a couple of weeks sometimes longer. kind of like a longer PMS. lymphnodes get swollen, breasts enlarged, weight gain but more like a feel that weight can't come off sort of like a bloating. then it goes away, weight decreases again and comes off easily? just wondering if this is another symptom?

 
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