surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Any advice how to climb out?
Working with great LLMD, currently on Azith., Doxy, Plaq. all kinds od supps, probiotics, herbs, detox remedies, Epsom salt baths, etc.
I started out the perfect Lyme patient, walked every day, drank massive water, on it. I am tired and weary now- stopped exercising, still taking the pills, but tired of it already. Not good.
I am assuming these low valleys are part of the deal? I don't want to do anything. Could this be herx part of the deal? Thanks.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
Up for input.
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Thanks for the up- I'm hanging in there, I'll be okay. Just a bad spell.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
It's hard to keep goin. Try, one day it'll be worth it, might be today.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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I have been unable to exercise for the last 2 months because of extreme fatigue and dizziness (at times)
I found the Zith was making me really dizzy after 5 weeks. So I had to do some adjusting.
I hope you get your energy back soon. It seems to come and go in waves
Paul
Posts: 925 | From Connecticut | Registered: Aug 2010
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Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
I'm on month 6. Lots of ups and downs...but I am feeling pretty ok for the last three weeks... Longest ok yet. I find the crashes/herxed really despressing especially after a good period. Even if they are lighter than the first ones... You kind of convinced yourself that maybe this is it and the worst is over. But I also use the the crashes to get me me back on the ball. By then, while feeling good, may have had a glass or two of wine, some of hubby's carbs he leaves on his plate, a bit of sugar...an extra piece of dark chocolate or two or five.
I am not doing very many supps, as I have so many allergies and think they were making me worse... But I know the ton of pills can be a drag. Many people tell me in general (not specifically for Lyme) that it is good to take a supplement break every now and then. so maybe if you just took the your scripts and probios for a few days it would give you a break from what feels like taking something every 1/2 hour.
Posts: 1728 | From USA | Registered: May 2011
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
It does get overwhelming and oppressive.
Sometimes when you start to slide it is because another infection is taking over and you need to change your treatment approach. The slide can start mentally and emotionally - feeling depressed with no motivation is a big part of babesia. Bart is irritation and feeling like nothing matters - depersonalization.
So beware of mental changes as well as physical ones. Hang in there. As long as you are tolerating your meds there is no good reason to stop prematurely and set yourself back. The supplements offer support for detoxing and boosting the immune system. It all matters.
Eventually you will get well. I am much better. I don't need the massive supplement support any more (my diet is excellent) and I am off abx for the time being. I have been treating for nearly four years and just started PE1 treatment to boost my immune system so I hope it can take over where the drugs left off.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Thank you-
I really, really appreciate the feedback.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
Hi ! I've been sick over five years.. Just diagnosed mid-Aug.
Had been being mildly treated for other un-known /Brucellosis type infection before.
So that probably kept me somewhat going for a while.. BUT last year i had a few steroid shots for pain.
That blew this whole thing to another level.
So since Aug. on several ABX's supp's and herb, I also was looking for quicker results.
I hope they caught your illness early.. And remember NEVER have/take steroids.
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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posted
Finally seeing some light... after 8 months continuous treatment. I was where you are, and almost gave up because I thought there was no hope for a case like mine. I have a long way to go but I now believe I will get where I want to be or close to it someday. Last week I had my first genuine smile and laugh. My family went silent because they hadn't heard my laugh in almost two years. Have hope
-------------------- ------------ It took 20 years to find out I'm not crazy. New bite in 2010 pushed my body over the edge. Positive for lyme, babs, bart, and myco. I am not a doctor and happily offer only my own opinions. Posts: 357 | From The Beach | Registered: Feb 2011
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
It will get better. You have to believe that! We are all going on about our 18 month but all with very old infections. One son is symptom free and one made a huge turn around from a year ago. I am plugging away and notice small improvements every month.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
Had your D levels checked lately.. Or with me my potassium goes low often.. You mentioned a great LLMD and it looks like you got diagnosed early, maybe a call to see if a bit of a switch might help. Like Doxy/Rif .Who knows. It's very hard to handle this and If I'm told anything more than take your med is find JOY in your life.
That has been a hard one for me and even though I've had some very difficult situations during this illness. It is not like me to not feel IT. And I've been through a lot before this... I guess I just got hit with so many things at once .............. So I have to work on this ,but find joy, delight, peace.
Others that have gotten well ,mostly had a good attitude. from what I've read. Blessing's , Nonna
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Thank you for the encouragement- not giving up, I can't.
No, Lyme was not caught early in my case. It is at least 14 years old, possibly longer, but had encounters with wild and feral cats 14 years ago- scratched, bit.
My younger daughter has Lyme as well- from me- We started tx at the same time-
Plodding and plugging along, have learned a lot from Lyme net.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Sorry, meant to add: My daughter and I do see our LLMD every 4-5 weeks, and it we get switched up a lot. We have different treatment plans.
Yeah, I think it is just waves of depression, part of how I herx, I think. And this whole thing is kind of depressing!
On the other hand, before Lyme dx I thought I was heading into early alzheimers in my mid 40's.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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