CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
I guess I'm wondering about this as I've been in treatment 20 months now with no real lasting gains. I saw huge improvement on bart treatment but then have slid back with frightening, debilitating new symptoms. or is a slide back normal?
do some people just need to quit abx and pursue alternate methods of therapy?
Posts: 3528 | From US | Registered: Apr 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Could you still be having problems with bart?
I do have drastic ups and downs still .... I can have days at 45% .... then I can have days at 95%.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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The harder you work the luckier you get! Posts: 965 | From Nebraska Cornhuskers fan in Massachusetts | Registered: Dec 2007
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Absolutely I could. I will have to let LLMD make that call. It's really frustrating. I also had days of 95% and then days of 15%. The psych symptoms for me are the worst....horrible suicidal anxiety and depression, convinced that I have ALS or MS, that I'm going to die, etc etc.
anyone else have this?
Posts: 3528 | From US | Registered: Apr 2007
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
yes, CD57, I have this horrible anxiety, depression, doom, worry....klonopin makes it bearable.
Do you use an anti-anxiety?
Bart does this to us....at least to me.
I feel your discomfort, Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Sounds like bart. I have the same ups and downs.
However, I've recently found that adrenal support is helping tremendously, as well as addressing thyroid problems and low levels of vit D and B-12.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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Alv
Unregistered
posted
Have you used HH Capsules , Oregano oil , cloves oil , Garlic on high dosages anything like that.
I use the oils and rub them in my body .I even used once 1/2 bottle of the OREGANO exstra strength and rub it in my skulp.bart loves to hide in the tissue.
Yes it sounds like bart.I am still chasing it with lower dosages.I am afraid that DR J S is right.It seems like the last one to go .
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I was on a variety of abx for 8 months. It did nothing to help me. I actually felt worse due to abx side effects.
i just don't feel the more is better approach is for everyone.
Using the LightWorks was my biggest breakthrough!
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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Shosty
Unregistered
posted
I was on abx for 6 years w/out a whole lot of progress, although some of my most extreme symptoms went away or lessened and stabilized. Have been seeing an alternative MD for two years now (since I got off antibiotics).
Do you know if you have a positive ANA, or if you have the HLA-DR 4 genetic type? People with that type, or who develop some autoimmune response to Lyme, can be hard to treat.
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Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
[QUOTE]Originally posted by CD57:
Our LLMD told me treatment can take years and often you get a patient to remission and they fall out of remission 3 times before they get well.
I am personally waiting for any remission!!!!
I still believe you have to keep going with the antibiotics and other protocols he suggests as even on the 'Under our skin' Video they say its not until the 3rd year that you really see improvements.
make sure you treat that BABESIA now and then bart again as again i was told you have to clip between Lyme Bart and Babs for it all to go
I really really feel your pain as I am where you are right now emotionally but nothing is permanant, everything is transient
Hang in there
Your LLMD I beleive has tried and followed many patients on the Bionic 880 or whatever its called over a 8 year period and says he has seen no evidence of its success - and you know him he would let you stand on your head naked if he knew it worked, so for him to say this I would go with whatever he suggests as he will find your cure.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
If the infections are confirmed objectively and the patient doesn't respond, it means ongoing treatment should continue, while also exploring combination therapies and potential co-infections, as well as other issues, hormonal, heavy metals, detoxification. These are important.
Some patients don't seem sustainable progress for 3-4-5 years on antibiotics, just for Lyme Disease, nevermind other infections. Different strains respond differently, and other infectious diseases which aren't known to LLMD's or anyone else can also be involved.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
"Your LLMD I beleive has tried and followed many patients on the Bionic 880 or whatever its called over a 8 year period and says he has seen no evidence of its success - and you know him he would let you stand on your head naked if he knew it worked, so for him to say this I would go with whatever he suggests as he will find your cure."
Rianna, I have been trying to find info out about the 880? Are you sure we are talking about the same machine? How many patients did the doctor send and to what doctor? BTW I have no axe to grind and am on no ones side here, just trying to find out more about this LED therapy. thank you, JL
Posts: 268 | From new york city | Registered: May 2008
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
I actually have never asked him about the Bionic 880.
The reason I ask this question (as to whether some don't improve) is because I recently crashed with horrendous suicidal depression and brain fog and confusion along with some scary new physical symptoms of shakiness and imbalance/vertigo. I did three things in the past month (stupid me!) which may be contributing to this crash: 1) did a DMSA challenge (didn't notice anything after this though, and it happened about 3 weeks before my crash) 2) started CSM (and then quit) 3) started weaning off of Klonopin.
My two LLMDs say any of the above could be responsible. My main LLMD said I was toxic and wanted me on CSM, however it seemed to initially work and then made me constipated and feel gross. Any opinions here?
Posts: 3528 | From US | Registered: Apr 2007
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Cass A
Frequent Contributor (1K+ posts)
Member # 11134
posted
Dear CD57,
Klonapin is very hard to get off. The body becomes dependent, and then whatever was being suppressed by the drug comes crashing through. Plus, these drugs cause their own physical damage which shows up later. Klonapin is, after all, a central nervous system depressant--says so right in the medical literature.
Have a look at the website for The Way Back. This may help you.
I'm sorry it's going so rough for you!
Best,
Cass A
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
Have you treated Babesia?
Every one of these symptoms horrendous suicidal depression and brain fog and confusion along with some scary new physical symptoms of shakiness and imbalance/vertigo
Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
Also you should every only do one thing at a time......
You should have just done the CSM protocol with lymp drainage, lots of constipation aids and weekly colonics - I did this for 4 months before attempting anything else.
Reducing your klop should be the very very last thing you do right now and only when you are well and at the end of treatment
X Rianna
Posts: 1172 | From UK | Registered: Jan 2007
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posted
Have you ever been evaluated by someone who really understands detoxification issues? Sometimes, for a combination of the reasons, the body's pathways are blocked. The body doesn't take stuff in (meds, supplements, nutrition) and doesn't get rid of toxins and other wastes. I thiink it's too complex to experiment on yourself. You need guidance of a knowledgeable naturopath or other alternative practiontioner to help you make your way.
Posts: 991 | From California | Registered: Feb 2006
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