lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
After a day of feeling completely depersonalized (all foreign to routine and loved ones), do you constantly dream and wake up more depersonalized than other days? My saga is this and is maddening. Thanks.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
Up.
-------------------- 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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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
OCD at it's highest
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
You need to explain this better I think.
Did you test for all of the infections? There may be somethng you are missing. You probably need a change in drugs if the ones you are using are not working. You say you have been on and off treatment. You can get resistant doing that.
My brain is my biggest problem too. I recently found out I also have ehrlichia and babesia. Ehrlichia can cause some of the same symptoms as bartonella. Then there is the BLO that has not even been identified yet.
You just have to keep trying different drugs until you hit the magic bullet. You need a LLMD that listens to you, takes you seriously and is willing to try everything possible to help you.
Will your husband read about the diseases so he can help you figure out other stategies? You need an advocate to be proactive for you, take up your fight. Our brains can hardly remember what day it is much less which drugs might work to help us clear up that mess in there.
What all have you tried so far and what are you taking now?
Lyme causes "brain fog", bartonella "depersonalization", anxiety and irritation, babesia depression and ehrichlia confusion. Put this all together and we are off to the looney bin. I am obsessive too although I would rather not admit it. Being on here ten times a day searching for "the cure" is a little off the deep end. And If I am not obsessed with what is wrong with me I am obsessing over everyone else.
-------------------- 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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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
Thanks nefferdun. Doing herbals for the first time for treatment. Rocephin/Zithro for years. On 10 ms. Remission 6 mos. on 9 mos. remission 2 weeks, I'm scared like everyone else, but I remember a person before this happened to me. Rifampin almost put me in an asylum, tindamax, flagyl...This was a bad round and still continues. OCD running rampant, had to get off all ocd meds cause of salt, all ssris and tricyclics. I wish you some peace. I have lyme and bart and my llmd suspected ehrlichia. I don't have an llmd, cause she was great, but kept pushing me on everything when I was begging for sanity. She wanted me back to me, but I had to take a break from antibiotics. She wants me back on, but I feel at this point I am so messed up, hopefully my herbal woman can help. Thanks for your advice. I'll pray for you too.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
The LLMD says I don't have bart because i didn't test negative. I sure do understand it and know what it does, for a person who is just infected by imagination. But maybe he is right and it is something else. Whatever, we just both need to get rid of whatever is making us sick, or at least under control.
I don't have much faith in herbs unless the person is a world famous expert such as Dr. K. I hope it works for you. You may have chemical sensitivity which is just making things worse for you.
The LLMD that diagnosed me with bart (according to symptoms) said there are no herbs that are effective against bart. And his partner is a homeopathic doctor.
When I had the tendonitis from Levaquin I had to go on herbs because of chemical sensitivity. I took 12-20 HH capsules a day along with Cumanda and clove bud oil. I stayed stable for a few months but slowly slid back into it.
Presently I use resveratrol and lumbrokinase with the amino acid cysteine. I was on Bactrim DS and zithro. My bart symptoms are taking a break and the babesia is having a hay day. So I was put on mepron and zithro.
I was totally fed up with herbs when I relapsed but as everything eventually fails I realized I should not be so prejudiced. I believe we need to change protocols a lot no matter what we are using.
-------------------- 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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posted
I am where you are honey --out of the blue--at least you have validation that you are infected--there are days where I absolutely, positively cannot stand not being myself anymore--it is not brain fog--it is an altered reality that feels dead inside--I used to be such a quietly happy person--really-grateful for the tiniest thing--even vacuuming would make me sing. How stupid but true. I hope we all find our way back--I feel your pain. Nobody understands till you have been there. I have been through much like millions but this has shaken my faith. Bless you all...Marilyn in NJ Currently: Bactrim DS Zith and Doxy
Posts: 8 | From edison, nj | Registered: Dec 2008
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posted
[QUOTE]Originally posted by biggirl58: [QB] I am where you are honey --out of the blue--at least you have validation that you are infected--there are days where I absolutely, positively cannot stand not being myself anymore--it is not brain fog--it is an altered reality that feels dead inside--I used to be such a quietly happy person--really-grateful for the tiniest thing--even vacuuming would make me sing. How stupid but true. I hope we all find our way back--I feel your pain. Nobody understands till you have been there. I have been through much like millions but this has shaken my faith. Bless you all..
I completely feel the same way that you feel biggirl158.. It is so awful, so hard to explain to anyone else. My husband is great and tries to be understanding with me, but I know it's impossible for him to completely get it. So frustrating. God bless you, too.. I hope we can all get through this and get back to living again.
-------------------- "The simple things can get you through the hardest times." Posts: 628 | From Connecticut | Registered: Sep 2010
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