posted
Why is this happening? Is it because my immune system is nonexistant? If it's not a cold it's a stomach flu or migraine. I swear it's gotten worse since starting antibiotics and right now I'm only taking 600 mgs of Azithromycin.
I'm supposed to add Minocycline and Hydrocortisone (apparently my cortisol is barely there) but I'm too sick to deal with the side effects so I haven't taken anything yet. All I want to do is crawl under the covers and cry.
I just know I'm going to get the Swine Flu this fall. It's inevitable. Sigh.
brooke
Posts: 117 | From PA | Registered: Aug 2008
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Hey Brooke...I've had Lyme for 4 years. The first 2 years I got sick constantly. Caught everything that went around. The last 2 years, I swear I could lick doorknobs for a living and not get a sniffle. It's wierd.
I've read that when you getting sick ALL the time, it's b/c your immune system is stuck in overdrive....so yours is probably working, it's just working too hard.
This can be bad for Lymies especially, because the immune system is so busy attacking every pinny-inny little virus out there that the Lyme goes unchecked.
The key is normalizing the immune system. Do you take vitamin C? I mean high dose, like 5-10,000 mg. a day? There are also some really good natural products out there that can help normalize the immune system.
Hopefully things will ease up soon - I know how miserable it can be.
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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Siciliano
Frequent Contributor (1K+ posts)
Member # 15920
posted
Oh,,,dear Brooke--I'm sending you angels to hold you up--am sending you hugs too.
I know exactly how you feel, I promise you things will get a littly better.
I think you should call your dr. and talk about cutting back on your meds. I know for a fact that
I was suffering just like you and having horrid
herxing and when I cut back to the smallest
amount possible--my pain was a little better.
My system was sooo bad that I could only take
1 antibiotic pill every other day! Please call
your llmd and discuss this plan. Some of us, like
me and you need to take very, very small baby
steps.
I n'ow have tears because my heart feels your
pain. It will get better, I promise. I'm really
sorry that you have all this pain. I'll be pray-
ing and thinking of you....Mamie
-------------------- I'm sorry but I am no longer accepting any private messages due to my own battle with lyme. Posts: 3897 | From New Hampshire | Registered: Jun 2008
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posted
I know exactly how you feel. I have been sick since the middle of last month. Aching, muscle tension/pain, low grade fever, subnormal temp, fatigue......some days are better than others, but none are good.
I finally just called my doc and have an appointment for next tuesday.
I take 1200mg neurontin every five hours or so and that makes life tolerable for a while. I've started taking supplements thinking they will help.
I have little to no energy.
I can deal with this, if the doc says that it is a herx and I'm killing off lots of bacteria.
I can deal with this if I get something else to take the edge off my misery. Something more than the neurontin.
You aren't alone. I'm here in california and online a lot because it is restful, quiet and I can "talk with others" and "socialize" without having to expend hardly any energy.
Don't give up. Remember, the worse you feel the more bacteria the antibiotic is killing. It is hard, I know, but we can get through it together.
Make sure your doctor is aware of your suffering. There may be a medicine to help you feel better, to help you cope with it better.
-------------------- Lyme is like the flu. You can get it and recover, but you can always get it again. Posts: 607 | From (deer tick)Heaven! Angeles National Forest | Registered: Oct 2000
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posted
Thanks to everyone who replied. It really means a lot to me.
I just bought one of the top brands of Vitamin C yesterday. And I thought I was doing everything right by washing my hands, not touching door knobs, eating organic, drinking lots of water, etc, but I continue to pick up something every time I venture out, which isn't much considering how horrible I feel.
I've been on 600 mgs of azithromycin for 3 weeks so maybe this is part of the herxing process. Can't imagine how ill I'll feel after adding minocycline. Yuck.
Thanks again for all your replies. You guys are the only ones who understand.
brooke
Posts: 117 | From PA | Registered: Aug 2008
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
i don't understand this disease. for a year and a half, at my sickest, i caught nothing at all; it's like my immune system was totally asleep. then this past fall/winter i swear i was sick every month, catching everything under the sun every time i ventured outside my apartment. so weird!
i hope you feel better soon and that your immune system starts to normalize. hugs.
posted
brooke- just one thing; stay AWAY from hydrocortisone; it is a steroid which is immuno-suppressive, something that lymeies need to avoid at all cost. do a board search.....
Posts: 588 | From Wallingford, CT USA | Registered: Sep 2003
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posted
I was, what I thought was constant herxing for 4 yrs. Found out I have Pyrroluria KPU 2 mo ago. It keeps the body from detoxing and many other things. I keep posting this as I don't want anyone to be suffering as long as I have. http://drrandy.org/article.htmlPosts: 905 | From Santa Cruz,Calif | Registered: Aug 2005
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Dawn in VA
Frequent Contributor (1K+ posts)
Member # 9693
posted
I was sick constantly for the first 2 years of treatment. I actually began having a fear of even TOUCHING doorknobs! When I took my first "holiday" from treatment, something bizarre happened- whereas I had a cold ALL the time, like literally every day, in the winter and spring, I only caught 2 during my "holiday" period.
I have never detoxed as much as I should. So many people recommend so many different things that I just felt overwhelmed and unsure. I've used some stuff, but not the binding agents. I had to go back on ABX again last month whamo! A cold. I experimented and took a few days off and the cold was gone. I really think this has to due with overloading the system with neurotoxins, perhaps from Bb die-off, NH3, and the like. I am just starting a new regime of dedicated detoxing and hope I see results.
I'm pretty good about probiotics, but also notice a difference regarding immunity if I get lax with them.
So, question for ya, have you been detoxing properly?
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
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posted
Hi Dawn, Not sure if u were asking me or someone else. Yes,I was taking all measures to detox.Followed by my Md. Pyrroluria,KPU seems to be many peoples problem. Joyce
Posts: 905 | From Santa Cruz,Calif | Registered: Aug 2005
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posted
Dawn, I guess I don't really know much about detoxing. All I take is a probiotic. What are some other things I need to be doing? And would that help with these viruses I keep getting?
Lifewithlyme, My cortisol levels are so low they are almost nonexistant (kind of like my immune system). This has been going on for years and my doctor says I have to take it to feel better.
brooke
Posts: 117 | From PA | Registered: Aug 2008
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posted
Hi Brooke - You might ask your DR about changing ABX, You've been on it for several weeks now and some people have problems on it. My dauther can't handle it - makes her very sick. Maybe try Amoxi or Ceftin? Hope you will try something else and maybe have an easier time of it. SSSSH...the herx'g is bad enough, but then you should feel better when it's done!
Healing in Santa Barbara - the link in your post is interesting. The retreat - where ever he finds it - sounds wonderful!!! Sign me up!! Would love to get away and get spa like treatment tailored for my illness and symptoms. Eat the right foods and detoxify. I do good massage - maybe I could work in trade for other services.
At this time in my life - this would be my choice for a most rewarding vacation! Sigh me up! peedie and daughter pea
Posts: 641 | From So. CA | Registered: May 2008
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