posted
I went to my family doctor to touch base. He was upset I went to the Fibro and Fatigue center and the long term antibiotic use. He couldn't believe they would put me on medicine for more than a month. He also didn't believe in herxing. He said that it doesn't happen. My doctor then advised me against going to see Dr. C. in PA. He said any doctor that doesn't take insurance and sells you all these supplements is just after your money. This is so frustrating.
Has anyone else had this with their doctor? I have no idea where I can find another doctor who believes in chronic lyme.
Posts: 144 | From Pennsylvania | Registered: Jan 2011
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
It�s amazing there is a controversy to this insidious disease and I�ve found it easiest to show a couple of u tube video�s on the controversy.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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philly78
Frequent Contributor (1K+ posts)
Member # 31069
posted
My MIL sees Dr. C. She has been with her for years and cannot say enough good things about her.
Dr. C gave my MIL her life back! She had been very bad to the point we were told she had dementia or early onset Alzheimers. She took a leave of absence from work and was ready to go for early retirement before being pointed in Dr. C's direction.
I actually have an appt for my son with Dr. C in September and have heard good things from other people as well.
Not sure why the doctor doesn't believe in herxing. Even some of the mainstream ID ones do. A coworker of mine was just diagnosed with lyme. She came to me after seeing the ID doc associated with my hospital with all kinds of questions. One of the things she said to me was....Dr. said I was going to get worse before I get better....did this happen to you? Well....that is the herx.
there is a reason these docs do no take insurance and while your PCP may mean well, s/he doesn't seem to know what they are talking about. I wouldn't put too much faith in what your PCP says. Jmo.
-------------------- When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal. Posts: 1000 | From PA | Registered: Mar 2011
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posted
I had an incredibly similar experience with my PCP. In fact, he "forgets" to fax my monthly blood checks to my LLMD. I have an appointment scheduled with a new one in September, but I can't let my current one know until I get through my August blood work.
I am just approaching it with the attitude that I have to switch, because I don't think that he and I can agree about a fundamental part of my health.
Posts: 447 | From Vermont | Registered: Jan 2011
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posted
I for one don't think the use of long term abx is healthy at all. I also had the sane question about if these llmds are just after out money. So in the fence with the whole thing it's unreal! Posts: 96 | From USA | Registered: Jun 2011
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philly78
Frequent Contributor (1K+ posts)
Member # 31069
posted
Long term abx usage may have it drawbacks but when you are very ill with lyme, what other choice do you have?
Teens are on abx for years to treat acne. TB patients get abx for one year or more. Hell, we have patients who get admitted to the hospital every other week to get IV abx! Seems they are in the hospital more than they are out.
As with any type of treatment, one has to look at benefits verses the risk. I know my MIL was on abx for years but she regained much of her function. It was worth it and I know she would do it again if faced with the same situation.
-------------------- When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal. Posts: 1000 | From PA | Registered: Mar 2011
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posted
Yes. I stopped seeing other doctors because of it. The only practitioner I saw was my LLMD.
My LLMD sold supps for convenience, but he always told me I was free to buy them elsewhere. I find doctors who don't try to optimize health (sometimes with supplements) .... uh, there are so many ways to complete this sentence. Let's just say, I don't trust doctors.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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lou4656
Frequent Contributor (1K+ posts)
Member # 10300
posted
Lada -- I also was against long term antibiotics. But I felt so horrible that I decided to go with it.
One year of antibiotics and I was my old self. No sign of lyme. So, even though I know the side effects, it was worth it me to have my life back.
I can't speak for everyone, but long-term abx definitely worked for me.
-------------------- LouLou Posts: 1276 | From maryland | Registered: Oct 2006
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quote:Originally posted by sixgoofykids: Yes. I stopped seeing other doctors because of it. The only practitioner I saw was my LLMD.
My LLMD sold supps for convenience, but he always told me I was free to buy them elsewhere. I find doctors who don't try to optimize health (sometimes with supplements) .... uh, there are so many ways to complete this sentence. Let's just say, I don't trust doctors.
- Amen to that. Dump the clueless GP/PCP if you want to get well!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Hambone
Frequent Contributor (1K+ posts)
Member # 29535
posted
quote:Originally posted by sandim: He also didn't believe in herxing. He said that it doesn't happen.
Well that's just crap. That's just ignorance. It is well known that a huge danger in treating meningitis is the die-off makes the person even sicker. I have a video here by Discovery Health Channel about meningitis and they talk about this die-off and toxins.
Point blank, your doctor, although he's probably a very nice guy, just doesn't know. And what they don't know, they poo-poo because their ego's can't bear to say, "I don't know."
You just have to look at all the people out there who ignored his kind of thinking and did long term abx's and are now well because of it. They would still be sick if they listened to doctors like him.
Posts: 1142 | From South | Registered: Dec 2010
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Catgirl
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Member # 31149
posted
My PCP was upset when one of the abx my lyme dr prescribed gave me dysuria. She started quizzing me--did your lyme dr. do a blood test, did he diagnose you after the blood test, what were the results of the blood test?...I told her several times that I was following the ILADS protocol and that my lyme specialist knew all about it. The next time I saw her I gave her the book "Cure Unknown" so hopefully she will understand exactly what I'm doing.
Then when I saw my obgyn's np, she asked me how long I was going to be on abx. I told her when I'm cured, that I was following the ILADS protocol. So at least that statement shuts them down (they back off). I guess I learned the hard way to answer firmly, I'M FOLLOWING THE ILADS PROTOCOL! I think most doctors don't know what it is, so they back off.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
So there is a reason why we call our Dr's LLMDs-- its because they ARE Lyme literate. If your Dr has an alternate diagnosis, with supporting blood tests, and has an explanation for why your Lyme test is positive (one that ACTUALLY make sense), then look into it, cause its important to rule everything else out.
I SOOOO dont get the Dr who can offer no other alternative to whats wrong with us, when we have all the blood tests, symptoms, reactions to abx, and still say we don't have Lyme. It goes completely against the scientific method.
Totally agree, Abx aren't good for us, neither are antivirals, chemotherapy, x-rays, etc.....but they are the lesser evil. The most dangerous people in the world are the ones who think they know everything-- who don't know, what they don't know.
Posts: 844 | From CA | Registered: Apr 2010
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posted
he doesn't believe in herxing....how do these people pass the exams?
-------------------- Listen. That's all we ask. Posts: 172 | From toronto | Registered: Apr 2011
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
Dump him/her! My daughter ONLY goes to her LLMD. I wouldn't trust anybody else with her health at this point. He is the only doctor who listened to us and actually did something about her illness.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
When a doctor is against long-term abx use, and has no other well-thought-out plan to attack this disease, RUN the other way.
On the other hand, I think very highly of docs who may be against long-term abx use, BUT have an arsenal of protocols/recommendations, etc. to help you regain back your health. (Docs like Dr. K and those he trains.)
My 15+ year road has been long and bumpy, but now I feel like I am on the path. And the conventional road of long-term abx is not right for me (although I tried it extensively, but only had minimal results). I've finally learned that I need to try to correct what went wrong in my body in the first place that allowed these bugs to get out of control. Heavy metal toxicity is my primary issue, followed by dental issues, mold, deficiencies, parasites, etc (all the things Dr. K teaches about, yet none of my other docs throughout the years even looked at these issues). No amount of abx will fix these issues. I am trying to build from the ground up. I think this is really the best way.
We're all different, just keep searching until you find the doctor right for you. It's too important to settle.
Wishing you the best.
Posts: 2238 | From East Coast | Registered: Jul 2010
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posted
I still go to my PCP once a year for my annual. I haven't even told him that I have Lyme. He does know I have arthritis and that I go to a rheumatologist. My LLMD is a rheumy. The PCP does my general work-up, checks for diabetes, high blood pressure, does a pap smear, etc.
I do it in part to support my LLMD because she wants her patients to have a primary care doctor.
It barely costs anything because my PCP is completely covered by insurance. But I agree with others, my LLMD is basically in charge of my health.
-------------------- Son, 26, Dx Lyme 4/10, Babs 8/10 Had serious arthritis, all gone. Currently on Valtrex Daughter, 26,bullseye 7/11 arthritis in knees, cured and off all meds. . Self:Lyme, bart, sxs gone, no longer treating. Posts: 496 | From Washington, DC | Registered: Jul 2010
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posted
@ Lada, many treatments for a multitude of illnesses carry risks. A person just has to weigh it and make their own decision.
Lyme effects everyone so differently. I, for one, considering the depths of hell this illness has taken me, it's a no brainer to at least try long-term antibiotics in hopes of improvement. The alternative, for me, is no life. I clearly think, in time, it would kill me. I'm still not out of the woods; but I'll take the risk of antibiotics, since from what I've read and tried so far, it's my best shot - the alternative is just not an option for me. I also do natural-type support and treatment, it takes all angles, IMO. TS
Posts: 566 | From West Coast | Registered: May 2008
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Catgirl
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posted
I agree with Tickssuck. I've only been on abx for 3 1/2 mos (with a couple of breaks for yeast) and I am seeing some improvement (my brain works better and my back is getting better). My doc has me on 3 abx to hit all forms of lyme. For me, it's working.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
@ lada be on the fence if you want but long term anti gave me my life back. hopefully some day soon ill be 100%.
-------------------- 3 months Doxy 8 months of Tetra 7 months of Biaxin/Plaq. 4 months Doxy/Biaxin/Plaq. 5 months Biaxin/Plaq. Back on Doxy/Biax/Plaq On the road to recovery. Trying to make people Lyme Aware....... Posts: 289 | From R.I. | Registered: Jun 2009
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posted
@ lada be on the fence if you want but long term anti gave me my life back. hopefully some day soon ill be 100%.
-------------------- 3 months Doxy 8 months of Tetra 7 months of Biaxin/Plaq. 4 months Doxy/Biaxin/Plaq. 5 months Biaxin/Plaq. Back on Doxy/Biax/Plaq On the road to recovery. Trying to make people Lyme Aware....... Posts: 289 | From R.I. | Registered: Jun 2009
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
if this is not a trusted long time pcp I wouldnt share any docs (llmd) name or info etc with them.
nothing good can come from telling them who they are and where to find them.
I dont lie about what medicine I take, but sometimes (often) I have selective memory when it comes to rx's them!!
Posts: 3905 | From USA | Registered: May 2007
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posted
I'm not saying that long term abx are not ok for some but may just not be good for all. I think it really depends on the bodys ability to deal with the meds. Not everyone can handle them. I like the fact that their are many alternative more natural treatments to help kick this monster. I'm sorry but I have read of quite a few that got even more messed up taking long term abx. Might be that those are peeps that just can't detox due to bad genes. I'm not sure still learning.
Posts: 96 | From USA | Registered: Jun 2011
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jackie51
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posted
Long term antibiotics can cause damage if not used responsibly. As can short term antibiotics.
There are many things that cause damage if not used responsibly. Nail polish remover, McDonalds food, alcohol.
The treatment and remission/cure of lyme and its co-infections can be simple for some and complicated for others. Long term antibiotics are a necessity for many. It should not be avoided by its simple definition. That would be foolish.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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Tincup
Honored Contributor (10K+ posts)
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posted
"There are many things that cause damage if not used responsibly. Nail polish remover, McDonalds food, alcohol."
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
There are worse things than long term antibiotics.......like long term Lyme Disease.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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-------------------- 3 months Doxy 8 months of Tetra 7 months of Biaxin/Plaq. 4 months Doxy/Biaxin/Plaq. 5 months Biaxin/Plaq. Back on Doxy/Biax/Plaq On the road to recovery. Trying to make people Lyme Aware....... Posts: 289 | From R.I. | Registered: Jun 2009
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posted
My goodness! Seems like everyone is in attack mode here. Sorry.. But I personally disagree with using abx long term.. IMO that's a year or more... Just can't be good for the body and I'd think it would weaken the immune system even further and also create a host of other likely visitors like yeast. But, this may not be an option for all.. And in that case the person should take the abx if they are seeing good improvement. Just my personal op.
Posts: 96 | From USA | Registered: Jun 2011
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posted
My goodness! Seems like everyone is in attack mode here. Sorry.. But I personally disagree with using abx long term.. IMO that's a year or more... Just can't be good for the body and I'd think it would weaken the immune system even further and also create a host of other likely visitors like yeast. But, this may not be an option for all.. And in that case the person should take the abx if they are seeing good improvement. Just my personal op.
Posts: 96 | From USA | Registered: Jun 2011
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