posted
So I'm currently on Bicillin injections and 3 oral antibiotics, byron white forumlas and a ton of supplements. Doing detox stuff too.
Nothing really seems to be working. Most of my symptoms are neuro, mainly cognitive impairment, and I wanted to start treating parasites as well as go on the Buhner protocol on my own.
I sent my LLMD an email asking if it was ok to either go on Parastroy for parasites or Buhner herbs, or both if he would allow it. He replied saying he wouldn't suggest taking anything other than what he's prescribed, which is what I listed in the first paragraph. He said the reason is because "it would be difficult to track results."
???
I'm pretty disappointed and debating whether to just go ahead and start taking the Parastroy and Buhner herbs without his permission.
Do you guys think this will be a bad move?
Posts: 121 | From Houston, TX | Registered: Aug 2009
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
That's always the difficulty when running a multi-med protocol. What's working? Is it a certain med? All of them? One can't always know. So your doc's reasoning is not that far-fetched...just probably his preference.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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scorpiogirl
Frequent Contributor (1K+ posts)
Member # 31907
posted
If nothing is working can you ask him how long he's planning to keep you on what you're on now?
I wasted a year with a doctor that way... so I understand your concern. I just feel that most doctors are not treating aggressively enough nor do they have a comprehensive plan.
Ultimately it's your health and your call... you have to do what you feel is right for you. Doctors don't always know everything... only what they are comfortable with!
-------------------- Posts: 1391 | From Lyme Land | Registered: May 2011
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posted
Youre already taking a lot of medications. I dont know your Dr or how happy you are with him, so its hard to advise. Does he have a plan for eventually treating parasites?
How long have you been on the other 3 drugs? Maybe its time eliminate one of them and then add in parastroy? It would seem reasonable to not treat parasites right now, as long as there is a plan to get to it.
Posts: 844 | From CA | Registered: Apr 2010
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
I really wish the LLMDs would follow Dr. K. and treat parasites FIRST and Lyme SECOND. He stated in a recent conference that's what should be the order of things.
The parasites are carrying and protecting the bacteria, so killing them first, makes it easier to get at the other infections.
If the Byron White formulas are antiparasitic, and I think they might be, then you should be okay.
You might have to take more or stronger ones down the road. See how it goes and if you don't see much progress in a month or two, maybe consider adding in more antiparasitic herbs and maybe some salt/c.
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
Does it really matter which is working? I treated parasites (on my own) while my LLMD was going after bartonella and I turned the corner. Which was it? I have no idea, and it doesn't matter, I felt better.
I would be careful of interactions. What bothers me is his reasoning. If he thought it was too much for you to handle, it would be different.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
that's exactly what I was thinking. I really don't care what's working as long as something IS working.
Screw it, I'm doing it...
Posts: 121 | From Houston, TX | Registered: Aug 2009
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
ppl are not getting better because they dont get with a GOOD llmd and let him/her have a chance to get them better
you must cooperate-it takes time
they are all different and that is a good thing cuz noone knows the answer yet
seek-i am not dead or in a nursing home right now because of more than one llmd.
your comment makes me sick.
on the road again...back in 24hrs.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Lpkayak, message erased. I didn't mean to offend anyone that much.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
My doctor wanted to go at snail's pace--as I were a controlled experiment. I did't feel we were keeping pace with the infections. I just added the Buhner herbs(full dose) myself--and told him about it at the next appointment. I can understand possibly not wanting to mix too many ABX's, but the herbs in general can be synergistic with ABX and benign in comparison, as long as you are tolerating them.
Posts: 226 | From Princeton | Registered: Oct 2010
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posted
You are already on a lot of meds and I think your doc makes sense in not throwing in other stuff too. You have not answered the question of how long you have been on your current meds. This is not a quick fix, so you must have patience
If I were a doc treating in this dangerous atmosphere, I would not want patients gumming up my treatment plan by adding things on his/her own.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
I've been in treatment for about 16 months with minimal success. Have been symptomatic since July 2009.
I've been on my current protocol for about a month.
I understand it's not a quick fix and that I'm already on a lot of meds. I don't think I'm "gumming up" his treatment plan by adding a few herbs. Buhner even said in his book that his recommended herbs make antibiotics more efficacious.
I respect my doctor and have been with him for about 5 months. I'm doing everything he's told me to do plus detoxing on the side (detox baths, saunas, diet, etc) but still not getting anywhere.
Obviously, if I start getting any sicker on the herbs I will stop as it may just be to much for my body to handle. I personally think it's worth a shot though. And I'll probably take whitmore's advice and just tell him at my next appointment that I began buhner's protocol.
I'll probably hold off on the parastroy for now. I recently consulted with a local Dr. K trained naturopath who did ART testing on me and told me parasites and viruses are a big part the reason I'm not healing. She told to not even go on parasite herbs as they take forever and don't reach the brain very well. She also told me to wait to talk to my doctor about starting Dr. K's 6 pharmaceutical anti-parasite drugs that he rotates for 6 weeks.
I just purchased Japanese knotweed, Eleuthero, and cats claw from first chinese herbs. Got a 6 month supply of each for $80.00 total. So if they don't work out, it's not a big deal.
Posts: 121 | From Houston, TX | Registered: Aug 2009
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
It's probably just better to self-treat then rather than to just use your doc as a med dispenser (granted sometimes that's all they're good for).
Once there is distrust and dishonesty in that relationship one might as well jump ship and try something else.
I ran Cowden with my abx but I did let my MD know what I was doing. It's doubtful he'll fire you.
As far as the doc's reasoning, what's wrong with it? Treating can be like a controlled experiment. More variables complicate things.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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posted
I can see why you might get impatient after 16 months, but really, people have been treated a lot longer than this and are not well. And you have started a new protocol only a month ago. Bicillin works well for some people, so give it a chance, and remember herxing can kick you in the pants anytime you start a new antibiotic.
Don't want to ask you the specifics of your other meds on a public forum, but what is your coinfection status. People who have untreated coinfections sometimes think they are making no progress, when the symptoms now are coming from the coinfections.
I agree with lymeorsomething about the controlled experiment and more variables. There is a lot of variation in response in patients and docs don't know in advance what will help any one person. As you know testing for no tickborne disease is totally reliable, so we are working in a black box a lot trying to figure out what germs we actually have. Not easy on patient or doc.
Posts: 8430 | From Not available | Registered: Oct 2000
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