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?
Posted by sixgoofykids (Member # 11141) on :
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%.
Posted by steelbone (Member # 14014) on :
abx did nothing for me..thats why i'm headed to germany
Posted by CD57 (Member # 11749) on :
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?
Posted by feelfit (Member # 12770) on :
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
Posted by adamm (Member # 11910) on :
Yes.
Posted by cactus (Member # 7347) on :
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.
Posted by Alv (Member # 15192) on :
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 .
Posted by sparkle7 (Member # 10397) on :
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!
Posted by Shosty (Member # 12232) on :
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.
Posted by Rianna (Member # 11038) on :
[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.
Rianna
Posted by METALLlC BLUE (Member # 6628) on :
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.
Posted by jl123 (Member # 15594) on :
"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
Posted by CD57 (Member # 11749) on :
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?
Posted by Cass A (Member # 11134) on :
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
Posted by Rianna (Member # 11038) on :
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
Are very classic Babesia
Rianna
Posted by Rianna (Member # 11038) on :
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
Posted by jblral (Member # 8836) on :
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.
Posted by oyvey (Member # 11581) on :
I have a friend with Bartonella who was on Klonopin (thought he was bi-polar) and he seemed Crazy with capital C when he went of Klonopin.
He's doing so much better now. Smart, stable, a good friend again, holds a job
He is now on levaquin bicillin and I think omnicef. It's like he's a different person.
He kept saying he was sober when he was going off Klonopin, but I thought he was on drugs...
Don't despair, maybe Bart and going off Klonopin mix very well for you.
![[group hug]](graemlins/grouphug.gif)