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Stuck with Lyme, not certain of a future

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Posted 7/18/2015 1:59 AM (GMT 0)
Okay so, I do not know where to begin so I might as well start with some of my past.
I was diagnosed two summers ago with Lyme. My PCP was less than happy when I pushed to get tested for Lyme but when it came back positive I was put on 4 weeks of Doxycycline and that was that. My brother got sick at the same time and he got the exact same medication as me. He is cured now.
Last summer I fell EXTREMELY ill overnight practically. I kept having hour long panic attacks and anxiety that would last all day. I was put on anti anxiety meds that I later quit cold turkey (they made me suicidal, my pharmacist said it was okay because I was taking them for less than a month) and the withdrawal was similar to that of the ones I see heroin addicts go through on TV. In addition, to the anxiety I had this band around my body, under my breasts that hurt and occasionally felt like someone was tightening the belt. My jaw ached, I was nauseous. The sight or thought of food made me want to vomit. I also had joint pain, light sensitivity and everything else I felt last time during my Lyme diagnosis. I saw a specialist who put me on 3 weeks of Doxy again and then 6 weeks of penicillin. During the treatment, I wanted to end my life, still having panic attacks and such. Not to mention brain zaps. Many nights I cried in my bed, wishing to run into my kitchen for a knife to end my life. I didn't want to go on. Many two docs before the specialist told me that it was all in my head and said I need to see a shrink. (obviously in a different way but still) This specialist was my only hope. My treatment ended a little prior to Halloween of 2014. I thought I was cured. With only a day or two once a month of pain.
In March and April, I started to feel pain, but only a week before and a little during my period.
Now, It is July and I feel the pain daily now. I do NOT want to go back to the panic attacks. My specialist refuses to treat me any further. My PCP sucks and didn't think I had me the first two times. I am thinking of seeing another specialist, but I am afraid of being told to see a shrink. I am starting to think I do not really have lyme and that I just have TERRIBLE anxiety that just manifests in physical pain? I have not had a panic attack since November or October when my treatment ended. I do not know anymore. I start college at the end of August and I do not want to have anxiety and what not when I am in my freshman year. What do I do? Is this all just in my head? Do I just suck it up, go see a psychologist and get anti-anxiety meds? Please help I am starting to feel like lyme is going to kill me.
Posted 7/18/2015 2:20 AM (GMT 0)
No normal doc is going to treat Lyme (if you have it...its chronic now) correctly at this stage. If you can swing it ($) maybe get an IGENEX test just to see what shows up? Might give you some sort of idea of where you are at... Could also be that you are dealing with a co-infection >..Bartonella??? I don't know a whole lot about it, but many times ticks carry more then just Lyme.
Posted 7/18/2015 2:26 AM (GMT 0)
I am aware that it is probably Chronic. I can't really afford the IGNEX. I do NOT have bartonella or any co-infections (or so I was told by my specialist who tested me for a few)
Posted 7/18/2015 2:26 AM (GMT 0)
I'm so sorry you're having such a struggle. I've had times like that myself-looking for knives that is; but something(someone)always stops me...

for me personally I remember that I DO STILL have a purpose in this life. I believe in the One true God of The Holy Bible, called Jesus. I know that He never promised that I WON'T suffer in this life, but I also know He loves me enough that He died on the cross to bridge the gap between God and my sinful self. We're all naturally sinful which is evident in how we rebel against God, by removing the crown from Him and attempting to place it upon our own heads.....

Being sick isn't a Sin, or sinful-I'm not at all saying that! But we live in a fallen world where good & evil exist. The 'evil' is disguised as false truths; such as getting to your mind & attempting to make you believe you're worthless. Don't listen to the enemy of God=devil. Turn to Jesus in prayer, ask Him to give you wisdom to understand HIS truth!

I hope and pray I havent offended you? If so, then I'm sorry...but I had to try!

But NO ONE is worthless. GOD loves ALL HIS creations and values them greatly.
Posted 7/18/2015 2:33 AM (GMT 0)
I do not believe in God. Especially since I have been treated TWICE with no luck and my brother is completely cured. I appreciate the kind words but until I am not suffering it will be hard for me to believe in a god.
Posted 7/18/2015 2:44 AM (GMT 0)
Wildcat

I'm so sorry you're feeling this miserable and helpless. I think everyone on this forum has "been there". It's horrible and it is indescribably lonely. But you are so smart to post and reach out because you are not alone.

I experienced the same crazy paranoia, fear, despair… I call it a "psychoneuro" response to the infection. I've gone over fifteen years w/out diagnosis or tx and had some really bad days but mine peaked when I started w/ abx. I felt INSANE for a good 3 wks but it finally subsided into a manageable level.

What I think is happening is that the infection can mess with your neurotransmitters. Some of us have genetic predispositions to neurotransmitter imbalances and the infection can really exacerbate this condition. Or, it can make you go from normal and happy to insanely full of rage or suicidal overnight. Very scary. Also, we can be genetically predisposed to having detoxing issues or we're just not detoxing enough to help the stuff you're killing w/ the treatment get removed from your body more effectively).

If I were you, I would seek treatment from another lyme specialist immediately. If you need names, please post a new thread with "looking for LLMD in XXXXX" and you'll get responses. Please avoid psychiatrists, as they are likely not well informed about lyme and will want to prescribe psych tropic meds, which could interfere w/ your tx, some could make you feel worse, yet others might work but you really need to partner w/ a lyme specialist about that.

In the interim, PLEASE do more detoxing. Maybe post a new thread and ask what people do to detox. I always find those conversations interesting and informative.

And please, continue to post and read through the site and ask any questions you have. We have great resources and moderators here who want to help.

p
Posted 7/18/2015 2:55 AM (GMT 0)
Thank you so much! I am looking at some specialists, but I think I will have to wait a while until they can see me and I them. It feels good to know that I am not the only one out there! Should I start detoxing in the meantime or should I wait until I see the specialist?
Posted 7/18/2015 3:04 AM (GMT 0)
Start detoxing now… just do it slowly, comprehensively and methodically.

I like thinking of detox in geographic regions of the body as you follow the debris "out the door":

You want your blood to really move throughout your body since it is carrying oxygen to organs and carrying debris to and through your filters (lymph nodes, kidneys, liver). So, dry brushing is great and after awhile, it's very much like meditation. Look online for good directions.

Since your liver is a critical filter, you want to support it with all the gunk your treatment is killing and the dry brushing that helps move more blood through the organs. Milk thistle seed, burdock root, bur bur are all great supportive tinctures for the liver.

Your skin is your largest detox organ… so sweating and detox baths are really effective. But you can overwhelm your body fast if the water is too hot (particularly w/ a y/f overgrowth, heat kills the y/f and I have passed out multiple times in hot tubs and showers that were too hot). Also, go easy on epsom salt/sea salt/hydrogen peroxide or whatever detox concoction you use. start w/ low doses at first and do baths every other day at first.

Since you're probably going to target y/f in the gut, a binder is essential. You'll need to provide a 1 hr buffer BEFORE taking the binder and 3 hrs after taking the binder with any food, beverage, medication, supplement, etc. And drink lots of water to help flush.

Others will have good ideas…

p
Posted 7/18/2015 4:57 AM (GMT 0)
Hi Wildcat - I'd like to officially welcome you to our community. I see you've already had some great information from the members.

I will repeat what Pirouette said - find a LLMD (not a PCP, not a Psychiatrist, not a Rheumatologist or Neurologist) - a LLMD is a specialist in treating lyme disease...and that's who you need.

So, you can start a new thread title: "Looking for LLMD in/near________" and insert your city/town and State.

Then you should enable your email option...as we can't post the names of the LLMD's on here - for privacy reasons (we need to protect our Docs). Members can send you emails.

To enable your email: Click on "My Profile" (upper left blue bar), then click on "Edit Profile", then click on "show my email", and then scroll down and click on "submit" to save you changes.
Posted 7/18/2015 4:58 AM (GMT 0)
Also, when you have a moment, you might want to take a look at the thread titled: "New to Lyme?...Start Here!" It's full of good information - symptom lists, probiotic information, detox ideas, and much more.
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