Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Thinking about doing this. We all know there are ways of getting antibiotics without a doctor (Mexico, online pharmacies, etc).
Sometimes I just feel like I could do a better job myself. I would figure out how to keep getting liver testing done, maybe through my Primary.
I feel like I could do better myself, because I can tell when something's not working, etc. I want the freedom to be able to say, "I feel like that was working and I want to stay on it." or "this isn't working...might as well stop it now instead of waiting 4 weeks." or "This symptom is coming back, and X drug helped it....so I want to restart X drug as soon as possible."
That kind of thing. Sometimes I feel like "I" know what helps, and my LLMD isn't living in my body, and sometimes they just make things worse.
I dunno....I just want to hear from those that treat themselves.
I feel like I'm close to the end of treatment anyways, and I feel like this could go faster if I just did it myself, instead of waiting for each appointment.
Thoughts?
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
I feel the same way about treatment..could do a better job myself. You can order your own labs from directlabs or prepaidlabs.
As of 1 April, you can no longer order abx from Mexico without a Rx :-(. I think you can still order rifampin & diflucan without a Rx.
Posts: 269 | From VA | Registered: Jun 2005
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djf2005
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posted
I do for the most part, yes.
I work w/ a bunch of Drs also, but no single Dr is calling the shots...
After being sick for a few years, you come to learn your body better than a Dr ever could, and abx combos, detox, chelation, and so is not all the complicated to learn once you know what direction you are headed.
I continue to consult w/ Drs and to pick their brains, but they are as befuddled as a lot of us.
Lyme is complicated.
Best
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
I did that for a couple years and got meds from mexico..
Ironcailly and this is funny.. kinda.
I now looked back at my list and method and it mimics what my doctors recommend now.
I think abx can take you so far and help with just a part of the puzzle. I give it maybe 1/4 or less of the puzzle.
Until they can find a way to target the infection more specifically we spin a lot of wheels.
Educating yourself or if your already very educated on what is what and what abx are used and why and their categories etc.... would be the only time I would consider it.
Knowing the interactions too and whys etc...
ALso.. checking in with a doctor to get blood work done to check liver levels. Or if you do not do this make sure you do not go aggressive and support the liver and kidneys and lymphs etc.
But I totally understand...
Luckily I have a doctor who gives me a lot of leadway and trusts me to adjust dosing or frequencies and take breaks etc and never gets upset etc. Not all doctors are like that and I am lucky. I think he trusts me because I have learned so much and been through so much and I know what is what and why and all that .. as well as he trusts that I know my body and when there is a normal reaction or herx or allergy or whatever.
Many doc just throw up their arms and well are happy to support us in any way they can.
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Derek,
Where do you get your antibiotics from? You can PM me if you don't want to post publicly.
Luckily I'll soon be moving to a place a couple hours from the Mexican border, so I can cross over and get my own drugs. But until then, I'm thinking of just begging friends for left-overs and maybe trying some online pharmacies.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Hoosiers51
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posted
Thanks for the support. I'm glad you guys can see where I'm coming from, and I'm not the only one. I have become fairly educated about all this, so I don't feel like I'm just a clueless person guessing.
I have seen enough good LLMD's that I have learned about many detox supplements/tools (like homeopathics, herbals, etc).
The only thing that's concerning me....is what if I start a couple things on my own, and then I get to the point that I need my LLMD's advice about something? (like sometimes, they have an innate sense about what infection caused my flare of X and Y symptoms. That is nice input to have).
Since I'm only currently seeing one LLMD, they would know I started that stuff on my own. I don't want them to be insulted. But what do I say?, "hey, I tried this on my own, and....."
I know that would make them mad/offended. I mean, they'd get over it, but I don't see it going over well. The few times I've switched things on my own, they were like, "why didn't you ask?" in a very accusatory tone.
So I'm not sure how I could have the benefit of getting their advice (paying for it too of course), without insulting them that I'm changing things around w/o asking.
I'm thinking maybe I could tell a white lie, and say, "I saw another doc who put me on X....." Though the "other doc" would actually be myself?
edit: springshowers, just read your post....glad your doc doesn't get upset about you doing your own thing. I would ideally like to stay with my LLMD, but unfortunately he is not so easygoing about me calling the shots, so we'll see how this plays out.
I'm pretty educated on drug categories, interactions, etc.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I did homemade Colloidal Silver for 3 months-
looking back I felt ashamed for doing this.
Now I look at it differently---It should be the ISDA and CDC who should be ashamed---Not me.
Do what you feel you need to do.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Hoosiers51
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posted
Thank you!
The thing is, I know quite a few people who seem to have improved the most when THEY were actually in the driver's seat, calling the shots, getting themselves better (yes, even with abx).
Posts: 4590 | From Midwest | Registered: Jun 2008
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djf2005
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CD57
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posted
Hoosier, isn't your LLMD pretty open to your calling the shots? have you tried the PA?
Posts: 3528 | From US | Registered: Apr 2007
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CD57
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posted
Hoosier, isn't your LLMD pretty open to your calling the shots? have you tried the PA?
Posts: 3528 | From US | Registered: Apr 2007
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Hoosiers51
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posted
Yes, for the most part they are. I mean, it could be worse. Just lately I have been really insisting on a couple things I wanna try, and it still hasn't happened...things I started asking about like 6 months ago. So getting frustrated. I don't want another 6 months to go by like this, if that makes sense.
It's becoming obvious to me that waiting around for the right time is pointless...the time to try some of this stuff is now.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Hoosiers51
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posted
CD57,
Your PM box is full!
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
You could get bloodwork done thru Life Extension. Membership is $75 annually. Then you order bloodwork as needed -- no physician orders needed. CBC/Chemistry Panel is only $35. Orders are mailed to you and you go to any LabCorp facility for blood draw. Results can be either sent by email or regualr mail to the patient.
I have done this several times for myself since I do not have insurance. Many other tests available -- such as thyroid panels, CRP etc.
Hoosiers -- If hubby did not have insurance we would probably be doing what you are suggesting.
We try to schedule appointments 6 weeks apart to save on costs and frequently hubby knows within 2 weeks if the changes from the previous appointment helped or not. Seems like we are always waiting for that next appointment to move on and then like you said the docs don;t always go along with all our suggestions.
It really is a tough choice.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Thanks for the ideas. I might just do that, with the labwork.
Yes, I am the same as your husband. I can tell within 2 weeks, sometimes even less time, if what I'm doing is going to help.
Luckily I've gotten my immune system to the point that I either respond, or I don't. But then I just spend the other 4 weeks or so sitting around, waiting to change. It's getting to the point that it's a big waste of time, and I"m watching months of my life go by!
Thanks for the support.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
I can't imagine doing this on my own. Everytime I think I know what I am doing I start having issues and talk to my llmd and he does something that I never in a million years would have thought of.
Even now that I am very well informed he still amazes me with his breadth of knowledge. A good doc is invaluable as far as I am concerned.
I was banging around on my own for over a year until I found my guy. Made all the difference.
Maybe many of you are way better informed than I am but I won't give my guy up until they pry him from my cold dead hands.
-------------------- Treelady Posts: 39 | From California | Registered: Dec 2009
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I am with you on treating your self. I say as long as you know the risks and benefits and can get blood work done, then great. You can even consult with say a NP that can help you run the blood work or at least help with the natural stuff too. Then you can get the abx on your own. I feel the same way------ that I have been at this long enough to know what helps and when.
Good Luck
Posts: 476 | From Columbus, Ohio | Registered: Aug 2007
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MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
you can get your own bloodwork done through other labs besides Life Extension, too- this was discussed here recently but I for the life of me can't remember the websites. Sparkle7 suggested them. It's comparable to Labcorp prices and you go to a local Labcorp for the blood draw.
-------------------- Symptom Free!!! Thank you all!!!!
posted
I would put my foot down with the LLMD and insist on the things you want to try. YOU are the client. Unless there's some real downside he/she is worried about, you are paying so you should be able to make requests.
I just don't get the doctor thing. The doctor is the employee and you are the boss. You go to him/her for expertise as you would a graphic designer, architect, etc. It is not a dictatorship.
I AM worried about you going off on your own though. There are combo, dosing etc issues to worry about and you'll need help if things go wrong.
Posts: 702 | From North Eastern USA | Registered: Dec 2009
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CD57
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posted
Hoosier box empty now
Posts: 3528 | From US | Registered: Apr 2007
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nefferdun
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posted
I have treated myself but I tell the GP what to give me. I went to an LLMD 500 miles away who gave me levaquin. When I floxed (at five weeks) and could not use any abx he refused to recommend herbs telling me I would have to come back to see his partner. A couple of months ago I went to a LLND who refused to treat the bart saying she likes to treat lyme first. It didn't make a dent in her mind when I argued that I have been treating lyme for two years. She also gave me augmentin after i told her I had a reaction to amoxy.
So I don't trust doctors to treat me more knowledgeably than I can treat myself. I am much better because I have researched this and decided for myself what I want to try.
For the most part I get my drugs from the GP but I have ordered from India. It is much cheaper and works just as well. I pay 3 dollars a pill for generic imitrex from India; whereas locally it costs me $24. When I was having daily migraine, I just couldn't afford buying it here. I also got zithro from India but currently I am getting everything from the GP. If I was ever cut off I would not hesitate to buy online.
I get blood work done from the GP. I have to tell him to give it to me. Even though he is giving me the drugs he does not think about it. I just call and the nurse gives me the test. I have heard of people telling the doctor they are an alcoholic and want to check their liver.
By the way, my current protocol came from you Hoosiers and it is working very well for me. Just about everything I have tried has come from online discussions and books.
My problem is knowing when to quit. I have felt nearly well before and quit abx too soon. I wish there was someone that would guide me through this - someone I could trust. That would feel so wonderful - but there isn't.
-------------------- 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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cactus
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posted
Hoos, I haven't read all the responses here (feeling pretty icky at the moment) but I wanted to just give you some support.
You are very well educated about this disease, and you know your body.
I think you would be an excellent doc!
Your LLMD would benefit from listening to your suggestions regarding your treatment, but if that's not happening - I think you can do what needs to be done, and do it well.
-------------------- �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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I have also been doing things on my own, and have made great strides. But I have arrived at a place where I now need to have labs done and other testing.
It is my hope to get another doc on board with those labs.
Additionally, web sites in which others have used for meds is what I have also been searching for. If anyone knows those links, could they either pm or post?
Sometimes, you gotta do what you gotta do. Just be cautious and critical.
LaurieL
-------------------- �Never doubt that a small group of thoughtful committed citizens can change the world; indeed, it�s the only thing that ever has.� Posts: 149 | From Kansas/Missouri | Registered: Aug 2008
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MariaA
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Member # 9128
I have NOT price-checked these against Labcorp, but I think in both cases you go to a local Labcorp location and get the blood drawn there and they mail it to the diagnostic lab itself.
I price-checked another 'order-it-yourself' lab a few weeks ago and the prices were comparable to Labcorp.
-------------------- Symptom Free!!! Thank you all!!!!
You can get your basic CBC with chemistry and metabolic panel for $26 if you're a member there. Full thyroid panel = $65, other tests are similarly reasonable.
Posts: 195 | From Manchester, CT | Registered: Jun 2008
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MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
I found another place with similar prices as you're quoting and a few dollars cheaper than Labcorp (I lost my bookmarks so I don't have the URL anymore), but there was a one-blood-draw $10 processing fee. so if you were doing one test like the CBC it was the cost of the test plus $10, if you did four different tests there was still just the single $10 to add to the cost. Keep searching online, there are quite a few of these.
-------------------- Symptom Free!!! Thank you all!!!!
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