RZR
Frequent Contributor (1K+ posts)
Member # 20953
posted
I have tried numerous LLMDs, abx, weight lifting, etc. I have not had even one decent day in over a year. Actually, I continue to feel worse.
I found myself praying today that GOD would just take me if it's not HIS will to heal me because I just can't do this anymore. I can't do this to my family anymore.
I feel like I am losing my battle with parasites, yeast, lyme, babs, and bart. My body feels like it's slowly dying.
When is it time to give up abx treatment? How long can I do this to my body without any improvement?
I am so sorry I am such a mess and crying here. I know you all have your own battle and I pray for each of you.
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
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posted
This is the place that you can be a mess, cry and vent. I am so sorry you aren't feeling well. I am only 4 months into treatment and am feeling like you do, I don't know if I can do it for a year or more...
I hope you can find the strength to figure out what you need to do to get better. But wouldn't it be nice if there was a "magic pill"?
-------------------- Down on her knees, she wept on the floor. This hopeless life, she wanted no more. Dead in the mind and cold to the bone, She opened her eyes and saw she was alone. ~Seether Posts: 427 | From Rhode Island | Registered: May 2011
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posted
Sent PM
Posts: 581 | From CT | Registered: May 2008
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Have you tried any antiparasitics? It was what turned the corner for me and saved my life. Don't give up, you just need the right protocols. Abx alone are not the answer.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
I hear you RZR. We all just have to take it literally one day at a time, sometimes one second at a time. We are here for a reason and our struggle is not in vain.
Maybe you could change LLMD's if you feel your treatment isn't working. Especially since I see in your signature line that no co-infections are being treated. Does anyone else think this is odd for an LLMD?
-------------------- aperture Posts: 551 | From Louisville, KY | Registered: Nov 2011
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fflutterby
Frequent Contributor (1K+ posts)
Member # 28081
posted
Praying for you RZR, maybe you need a break from treatment. Time to detox. Do know that it is the Lyme talking. Every day that we open our eyes is a gift from God.
posted
I am sorry. I have been at it for 15 mo. I feel the same way. I really can't believe this is happening.
I notice that emotions get really bad when it is a full moon. I believe it was last night. Maybe you will get out of this funk as the month goes on.
I agree with aperture. I had to change MDs before the first year and it was a blessing.
I am still very sick but my new MD is much more accessible and comprehensive. It really does make the suffering a little easier.
California is far but my MD does second opinions and can review your records without you coming here. I can email you the link if you like.
Posts: 253 | From CA | Registered: Jun 2011
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posted
Hang in there. It took many of us well over a year to have a good day. Pursue everything as intelligently as possible, evaluate all angles but also realize that this is a long-haul prospect.
Posts: 520 | From Maryland | Registered: Jan 2007
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
Lord ,RZR ,I'm so sorry you are feeling so despondent.
I've heard these words before....My brother...who just passed away a few months ago at 52.
He couldn't get medical treatment ,AR.. Not sure if same thing ,but tons of similar symptoms....
.We both got sick as dogs about 6 months after we had to unplug our Mom...
Doctors still don't know how she got as sick as she was or with what.. So they put down the usual on certificate and that was that.
But the heartache of those left behind is unbearable.....
Yes this is H--l on earth to go through.. A lot of that has to not only do with these actual symptoms, but to know that there is hope/cure/wellness and either falling through the cracks ,till it chronic or your immune is shot.
I too am having a really hard fight.
Coming up with energy to call, read , get to docs, just takes so much.
Several people have mentioned months before some positive movement. SO , do what it takes to hang in and fight....
Did you see UNDER MY SKIN?? MANDY at some point said this is WAR!!!!!!!!!!!!!!!!!!!
Well it is. Nonna
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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RZR
Frequent Contributor (1K+ posts)
Member # 20953
posted
quote:Originally posted by glm1111: Have you tried any antiparasitics? It was what turned the corner for me and saved my life. Don't give up, you just need the right protocols. Abx alone are not the answer.
Gael
Yes...I have been treating parasites for 18 months. After one year of Parastroy, I have been on antiparasitic drugs for the past 5 months....back on Parastroy last week and still pouring out. It seems they get resistant to treatment and you have to keep changing. I tried salt/C, but can't tolerate it right now.
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
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RZR
Frequent Contributor (1K+ posts)
Member # 20953
posted
quote:Originally posted by aperture: I hear you RZR. We all just have to take it literally one day at a time, sometimes one second at a time. We are here for a reason and our struggle is not in vain.
Maybe you could change LLMD's if you feel your treatment isn't working. Especially since I see in your signature line that no co-infections are being treated. Does anyone else think this is odd for an LLMD?
On my 4th LLMD, but she is the best I have seen so far.
The LLMD that did not treat any co-infections was the first doc I saw...highly recommended here. He kept telling me since I caught my bite so early, I had no co-infections. I learned the hard way.
I am now on my 4th LLMD, but she is the best so far. I have now been treating babs for 1-1/2 years and think it's finally gone. I will soon be switching to rifampin for bart.
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
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RZR
Frequent Contributor (1K+ posts)
Member # 20953
posted
Nonna....
I am so sorry to hear about your brother and mother.
I have not been able to get help in my state either. Jerk doctors here still say there is no lyme in TN.
I have seen UNDER MY SKIN and yes, this is H--L on earth!
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
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posted
I had to stop abx treatmetn becuase of recurrent c diff. and found when I went to Chinese herabl Medicine and acupuncturist that I felt like I didn't have the energy to keep fighting this disease.The CHM dr. put me on kefir and gave me acpuncture all over my body. I was also taking chlorella and doing other alternative treatments, including erchonia laser, reiiki and others. After several months of this I am much better than I was on abx. My stomach is healing, my gut is healing and I am getting off the antidepressants and anti-anxiety meds I was on for a year. I can only say that from my experience, if you feel like you need a break from abx, take a break. It is not the end of the world. Do not be afraid. You will find a way around this. But you need to listen to your tired body and detox and rebuild its strength up with foods and alternative methods. Best of luck.
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
What are your symptoms now and what drugs are you taking? Depression is associated with babesia so if you have started a new drug for that, you might be herxing.
You should talk to the LLMD to see what she recommends before you quit. Sometimes breaks are necessary but you have to have a back up plan. When I took breaks I used massive amounts of herbs to get by. They did not get me better but it took a while to begin to relapse so my body got a break from the chemicals.
Be very careful of quitting babesia treatment too early because it comes back so quickly and can build resistance. I was feeling like I needed a break in September so I cut way back on the babesia drugs.
I developed joint pain and had to start doxycyline again. I realized I needed a cyst buster and added in some tindamax. But I was still doing a relatively small dose of malarone to keep the babesia at bay. I think I was more emotionally overwhelmed than physically at that point.
Then I got sick with a vomiting bug and couldn't take anything for a couple of weeks. At the end of that time I feel the babesia took off again. So I have to travel 1000 miles to see a LLMD - which I should have done a long time ago.
We need emotional support. There are times we just can't put one foot in front of the other to do the next best thing. We are burned out and want to believe it will all go away on it's own but it won't. So keep your LLMD if she is a good one and thank your lucky stars you found her.
-------------------- 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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manybites
Frequent Contributor (1K+ posts)
Member # 33750
posted
I agree in babesia .The same thing happened to me when I thought I reached the first remission and pushed myself to work.I have had a car accident and babesia that was still there exsploded overnight almost killing me.Please do not quit babesia treatment as it comes back with REVENGE .
It did in my case twice.The first time I was doing a protocoll for parasites ( when I took high dosages of artemisin) and I thought I was dying from a heart attack and than I felt a little better to follow with a strong relapse that made me loose my brain function.The same things happened after the car accident.
It has been 4 years and I am still chasing it but this time I am in strong protocoll.I just hope that my llmd will help me to eradicate it.The first time I was told I do not have it as I was thin ( lost weight from active babesiosis ) and the second time I gained 60 lbs in 6 months when Babs was growing back .
I had always vomiting episodes everytime babesia comes back .This time I am adresing bart and babs as when I address one the other does not let me go further.Just hang in there as I herxed 2 1/2 year in a row the first time that sent me from bed ridden to part time job and the second time 1 1/2 year from accident and blood transfusion due to babesiosis to walking and talking as I lost every motor skills since babesia came fully back and bart was involved as well.
Posts: 1379 | From disable | Registered: Aug 2011
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annxyzz
Frequent Contributor (1K+ posts)
Member # 20404
posted
Saying a prayer for you NOW . I have felt the same despair before. Usually , I ask God "what do I try next "? "What is my next step"? I have no llmd, and truthfully know no one cured by one . ( Just my personal experience ) .
I did ABX for 3 years, and at least got rid of pain, but developed kidney problems. I personally belive they are a DEAD END unless one is diagnosed EARLY .
There are LOTS of other ways to attack . I have had best results with rife and herbs : grapefrit seed extract , artemesia annua drops from Herb Pharm , and rotating differnt herbs.
GSE and Artemesia annua , IMO, are just as powerful as ABX , which weaken your immune system . I started getting better when I got OFF ABX .
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
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