posted
I am trying to stay positive but it is hard. Some nights I honestly go to sleep hoping my suffering will end. I have been sick for about 2 years now.
I went undiagnosed for a while. I see a doctor in a week. I was told lyme but another doctor thinks I have mold.
The last year I feel I have declined even more. I am certain I am getting worse. I have constant head pressure the past week that is new and concerning to me. I can barely walk in a straight line. I always feel light headed and blood pressure is low.
Heart is always beating fast and I feel like I am shaking. The head pressure is by the temples and I feel tingling there and throughout my whole body. I feel weak.
The head pressure is making me concerned I now have some kind of brain swelling or tumor or something. I hate to keep thinking the worst but that is how it feels.
I just feel like this has done too much damage and it is too late to fix. I honestly feel like it is killing me.
Posts: 53 | From Texas | Registered: Apr 2015
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posted
Nothing right now. Antibiotics just made me worse and worse. Now they think I may have mold and that will need to be dealt with first before lyme. I just don't know anymore. Every doctor says something different.
Posts: 53 | From Texas | Registered: Apr 2015
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momintexas
Frequent Contributor (1K+ posts)
Member # 23391
posted
I'm not sure where in Texas you are, but we are having crazy weather where I am and I know the
barometric pressure can really affect us.
Unfortunately, antibiotics often make you feel worse before you start to feel better.
Are you seeing an LLMD in a week?
Posts: 1408 | From Tx | Registered: Nov 2009
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me
Frequent Contributor (1K+ posts)
Member # 45475
posted
Sending pm
Posts: 1431 | From USA | Registered: Mar 2015
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
I'm feeling the same way you are today, takethat.
I feel like ****.
I also got an unequivocal positive Igenex test finaly which cost me 1200 dollars for the worst news I ever heard in my life.
Today was my worst herx day since I got sick. I had a migraine, nausea, confusion, fake fever, terrible ache on the side of my neck; I felt like I had the kind of hangover you sleep through til the weekend is over.
Not to mention, researching Lyme -- the controversy, the outcomes, all of it -- is...absurdly negative. If you come online looking for some kind of hopeful news about your condition, well, good luck to you.
However. First of all, this is not killing you. People live a long time with Lyme - it's actually not in its best interests to kill you. I know people do die from it but really, it's not killing you right this second, it's just making you as miserable as I am.
Antibiotics make me worse too, sometimes really frighteningly so. I am not sure which symptoms I'd rather live with - the ones that come with abx or the ones that creep up when I'm off them.
The only thing that's been working for me is to quit when I feel absolutely awful and then start hitting it again. It's all I can tolerate but usually after a break of a day or two I at least don't feel like I'm in the next casualty of the 1918 flu pandemic.
I read something the other day -- "there's no such thing as a hopeless situation. There are only people who become hopeless about them."
What I do occasionally is think about the things that have gotten *better* this year. There are things that have stopped, like I used to bounce around in bed at night, and I couldn't use the left side of my body very well for about six months, and I had POTS, oh, and I had this period where my eyes were so blurry I really couldn't even look in the mirror.
Oh, I had nonstop IBS D for about eight months.
So that's better. There's still a crapton of stuff wrong with me, it is so not done with me, lol.
But what's better on you? Has to be something, one thing about Lyme is, it never stays the same.
Posts: 2057 | From Florida | Registered: Feb 2015
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
takethat, I am sorry you are feeling so poorly and discouraged. It is such a tough illness because there are so many unknowns and we feel so isolated and scared when we don't know for sure what it is causing our crazy symptoms. I have a lot of the head pressure and odd sensations/tingling that you describe.
I also have severe hearing loss,vestibular damage, and a very rapid heart beat with episodes of low blood pressure, but the low BP has improved over the last year.
At one point, I thought mold was my problem, but I am not sure it is now because my labs don't all point to that, and full doses of cholestyramine 3 x day along with moving to a brand new home on a slab did not change my symptoms. But I am now passing the Visual Contrast Test by Dr. Shoemaker (a good thing! ).
If you do decide to pursue mold, please pm me because there are some very good resources I can give you. Also, try not to give up hope. You are not alone in your battle.
Posts: 2387 | From New England | Registered: Aug 2011
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
mold makes me feel this way too.... .I sprayed my entire hours wherever I saw any mold with a mix of white vinigar and tea tree oil. it seems to have really helped especially in the bedroom/bath. the basement still needs to be done and I read a paper that talks about putting crock pots down there
with tea tree oil in them.... can't wait to try it.
sorry you feel so poorly.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3592 | From Eastern USA | Registered: Jul 2013
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posted
Oh I felt the same way you do! But it can and will get better. I was on ABX for 3 years after being infected initially in 1989 and I think again in 2003 - started treatment in 2011. Now on Ababs, interphase plus and artemisinin treating Babesia.
Herbal or ABX may be the answer but it does make you feel sicker for a while- and yes the weather pressure makes it worse. Acupuncture helped me a lot with the symptoms.
I also ended up needing thyroid meds and cortisol to make my brain work right and it helped with the crazy heart symptoms too.
Keep trying and you will get better. The symptoms go away slowly -
Posts: 68 | From NE | Registered: Aug 2012
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Catgirl
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Member # 31149
posted
Babs and or proto can cause head pressure. Peonyprincess's protocol can help.
Momintexas is right about Texas, the barometric pressure makes it worse for some reason.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Takethat, don't get discouraged. It takes time to unravel the layers of issues/co infections, etc. I used to have swelling in my brain too (it wasn't a tumor, just lyme/co infections). We've all been there.
If you feel like you're declining, it may be that your doc is missing something like a co infection. It sounds like babs to me but I'm no doc.
I know that whenever I changed docs, each one found something the others didn't. That didn't mean my previous docs were bad, just that it takes time, and of course a skilled lyme doc.
It also takes time for you to figure out your body and how it reacts to things, supplements, etc.
If you're not making any progress whatsoever, then maybe it's time for a fresh set of eyes to treat you.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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me
Frequent Contributor (1K+ posts)
Member # 45475
posted
Takethat, Did you ever start seeing a qualified LLMD? Antibiotics WILL make you feel worse if you have Lyme and coinfections bc it is killing the bugs. It causes a war, so to speak, in your body. Spirochetes are dying off, toxins are released, and it causes a herxheimer reaction.
A qualified LLMD will also look for a mold connection or can help figure out if it is a mold problem rather than Lyme and cos. I think I sent you a PM a while back with a LLMD recommendation that can look at all of these issues plus more.
If you want that info or need more support, PM me. Keep fighting. It can get better.
Posts: 1431 | From USA | Registered: Mar 2015
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