posted
Hi: I stopped going to my LLMD as I could not afford her costly visits, supplements, and was not happy with her treatment approach and side effects from doxycycline hyclate. I had lab work done through lab corp (through my insurance) which said that only band 23 was positive for lyme. The llmd also said my cortisol level, liver, etc. were messed up and that she thinks I present with signs of bart.
For financial reasons I decided to go see an infectious disease doctor who takes my insurance to get another opinion. He looked at my test results, listened to what i had to say and said go home and have a good life! Don't read anything on the internet. Your 3 months of antibiotics that you took should have been enough to kill whatever it is that you had. He also gave me a one week prescription for zithromax.
I told him I still have arthritis in foot, knee and arm which I never had before getting bit, but he did not care. Do I just continue to live and ignore with this annoying arthritis which is pretty mild compared to the symptoms some of you have and hope it does not turn out to be debilitating or do I antoher route.
Posts: 30 | From Northern virginia | Registered: May 2008
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Dawnee
Unregistered
posted
What your ID doc told you is typical of ID docs who do not believe in chronic lyme. You still have symptoms... you still have Lyme. Unless you WANT to get chronic Lyme and get worse, you need to stick with an LLMD's protocol.
"Don't read the internet".... yeah, because the internet is every stuck up doctor's worst nightmare. Lets keep the population uneducated and tell them to only listen to us and not do their own research.... yeah.
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posted
Sorry not inteding to put any fear in you. I saw two ID doctors and the both told me to go home.
Tests are negative thats the end of it. From my standpoint i would spend what i had to in order to be sure. ID cannot be trusted(sorry for the wholesale statement) when dealing with Lyme.
Dave
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
It's up to you. Don't be surprised if you continue to get sicker in the future if you fail to adequately treat Lyme Disease and co-infections.
-------------------- 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
definitely don't listen to the ID doc. Especially one as arrogant as the one you saw.
My ID doc is actually a very nice person and was absolutely thrilled when I told her yesterday that I have an appointment with a good LLMD next week.
Both my wife and I got the feeling that she was wanting to say "your finally going to get adequate treatment" but she kept it held in.
I had a rheummy tell me that I need to stop playing doctor and doing research on the internet. This was right before he told me "There is NO LYME IN GEORGIA"
Between telling me those things and writing me out a script for buspar because he didn't agree with what my psychiatrist has me on (for the past 12 years) he lost all my respect right then and there.
Posts: 123 | From Georgia | Registered: Jul 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
What's new...another ID doc. Been there...done that. I wonder if they had Lyme if they'd have the same viewpoint. Would it not exist? If there life was stolen, would they search for why?
quote:Originally posted by dudeplanet: Hi: I stopped going to my LLMD as I could not afford her costly visits, supplements, and was not happy with her treatment approach and side effects from doxycycline hyclate. I had lab work done through lab corp (through my insurance) which said that only band 23 was positive for lyme. The llmd also said my cortisol level, liver, etc. were messed up and that she thinks I present with signs of bart.
For financial reasons I decided to go see an infectious disease doctor who takes my insurance to get another opinion. He looked at my test results, listened to what i had to say and said go home and have a good life! Don't read anything on the internet. Your 3 months of antibiotics that you took should have been enough to kill whatever it is that you had. He also gave me a one week prescription for zithromax.
I told him I still have arthritis in foot, knee and arm which I never had before getting bit, but he did not care. Do I just continue to live and ignore with this annoying arthritis which is pretty mild compared to the symptoms some of you have and hope it does not turn out to be debilitating or do I antoher route.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Shosty
Unregistered
posted
ID doctors can be a nightmare. Rheumatologists too. Find another MD, like an MD who is a bit alternative but takes insurance. They can advise you while you figure out what to do.
You could also find an LLMD who takes insurance, if you have insurance. The Lyme Fdn. has a list.
If money is a problem, you can watch and wait and see what happens. It is possible that you could do 5 more years of antibiotics and spend a lot of money and not get a whole lot better, in my opinion.
But it is also possible that after a few months, or a year, or whatever, you start noticing some new things and feel strongly that you should get back on. That way, any money you spend will feel justified.
You can try some alternatives, but they are even more expensive. Start with Omega 3's, Magnesium, turmeric, and, some would say B vitamins (others feel these feed the bacteria). Try a gentle Physical therapist, massage etc. Again, I know these are expensive.
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
You may have seen some of this but, if not, the Savely article is splendid.
Your ID doctor is uneducated in the serious nature of tick-borne disease. Even with just a few of the articles below, it is clear that the ID doctor is clueless. And there are MANY more articles - and MUCH more research to illustrate the nature of the infection(s) and the importance of complete treatment, whichever path you take.
From personal experience, I know that supportive supplement are not nearly enough. The infection(s) must be specifically addressed. In addition, of huge importance is attention to the liver's ability to detoxify and the elimination of heavy metals, if present (as is frequent with lyme patients).
The Singleton book below, details a course for helping the endocrine (adrenal) system recover, as lyme is usually very hard on that entire system.
If you are looking for alternative routes, I highly suggest reading the books by both Zhang and Buhner. They approach this a bit differently but each has a clear and specific manner for addressing the infections - the supportive measures are still included to potentiate the action of treatment and help with symptoms.
You say your symptoms now are mild. However, I do not intend to scare you, but if you do nothing, it can get much worse. Your body is telling you something now.
There are many ways you can address this and I hope that you will find one that works for you to regain your health. Whatever time you spend reading more is an investment in your future.
Good luck.
====================
For emphasis:
". . .If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided. . ." . . . Savely.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" By Virginia Savely, RN, FNP-C
*****
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- FULL ARTICLE AT LINK ABOVE.
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in the Savely article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
==========================
AFTER reading the Savely article above this will make more sense and, sadly, shows the state of treatment:
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
- 2/3 down the page, you can download Guidelines for the management of Lyme disease
Lyme Disease and Modern Chinese Medicine - by Dr. QingCai Zhang, MD & Yale Zhang
you can access his web site through www.hepapro.com or try www.sinomedresearch.org and use "clinic" and then "clinic" for the passwords or call Hepapro.
Everything You Need to Know About Lyme Disease and Other Tick-Borne Disorders, 2nd Edition - by Karen Vanderhoof-Forschner (2003)
You can search inside the book and read customer reviews.
============
You might also want to do a search on the "Bionic 880" for a non-pharmaceutical treatment being done in Germany with specific use of infrared light, etc.
djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
i would see a llmd and make sure u avoid a hellish nightmare in the future. i concur with what metallic said, its up to you.
the decisions you make now will affect the outcome of your future as do all decisions.
if you are lucky enough to remain A symptomatic you may be fine. if not, your illness will progress and you will have wished you stayed with your pricy llmd. hate to tell you but they all are because of the possible liabity involved in treating an illness that does not exist (case in point you ID dr)
anyway, its your decision. cheers
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
While I would understand why one would hope to be finished
With this very nasty disease,
I would not trust an ID duck with much that had to do with Tick Borne Diseases.
Sorry.
Yes, you could save a lot of money.....
However, you could end up paying for it in more ways than one in the long run.
Please get yourself back to the LLMD.
Why in the world would the ID duck give you a Rx for zith?
For your arthritis??
Makes little to no sense to me.
You may stay without symptoms (remission).
I personally wouldn't want to buy into the "easy fix" mentality.
It has taken me a long time and lots of pain, suffering and money
Just to get where I am today.
I am not finished by a long shot.
Hope you find the answer that is the best for you and your health.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
"Do I just continue to live and ignore with this annoying arthritis which is pretty mild compared to the symptoms some of you have and hope it does not turn out to be debilitating or do I antoher route."
From what I see reading your posts...
You got bit, got an excellent LLMD, got treated, had herxes on schedule, recovered partially except for a sometimes achy wrist, quit taking the doxy and going to the LLMD, relapsed immediately, tried to find a holistic doc, went to an IDiot duck with more severe problems than you started with and got tossed out the door on your ear...
My thought is you could have bartonella?
Another thought... don't waste your time going back to the same LLMD.
Most people would give their right arm to have such a wonderful and highly skilled doctor helping them but you've done nothing but complain about her since you've been going there. And you've complained about the treatment she provided, the cost, etc in the majority of your posts.
Do yourself (and her) a favor....
If you decide to go back to a LLMD, please find a new one. I think you'll both be happier that way.
posted
If you can afford LLMD treatment, see the LLMD. But be aware that your IM dr will not accept anything the LLMD has to say, and will not be supportive of any aggressive treament your LLMD prescribes.
When it comes to LLMDs and IM Drs (hmo drs), they dont mix...
You really need to choose one or the other. Seeing both is counterproductive to your health....especially your sanity.
Posts: 514 | From . | Registered: Apr 2008
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posted
Since your HMO Dr is a LLMD, its not the same thing as what most of us encounter. Try going to another hmo dr, who isnt a LLMD, and see how far you get.
Count your blessings...I think most people, myself included, would kill for their LLMD to be a part of their hmo.
Wouldnt that be great?...hmo drs who are LLMD and then have insurance pay for treatment?
I know, its a dream, but you have to start with a dream before it can become a reality. ...someday...
Posts: 514 | From . | Registered: Apr 2008
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quote:Originally posted by dudeplanet: Do I just continue to live and ignore with this annoying arthritis which is pretty mild compared to the symptoms some of you have and hope it does not turn out to be debilitating or do I antoher route.
It's your choice. Either allow your body to slowly be debilitated or find a doctor whose plan of attack is similar to your own philosophy.
Give up and slowly go down hill....or have a plan for getting well. Your choice.
PS... Maybe you should read my lyme story before deciding.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
Zhang and Buhner? Do you have book names????
ID docs are some of the most clueless in the land! Drive me nuts. I tried to explain that Bb tends to be a long-lived bacteria and according to ANY ID textbook, needs to be treated for an appropriate length of time. HELLO! Did they not learn this in school? Look at other infections and how they are treated and how they arrived at the portocol.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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blaze
Unregistered
posted
I've seen two ID specialists. When I'd told the latest one that I'd almost died a couple of years ago, his response was a saracastic, "What did you almost die of?" Keep in mind he was holding my positives.
In fact, one was even CDC positive, and I'm positive for babs, too. He told me I didn't have Lyme, and that there was no way he was treating me for babesia (he chuckled).
He then went on to set my labs aside, and said to me, "Okay, what's really going on here? Why are you really here? Who do you have in your life?"
When I told him I had my daughter, he asked me how far away she lived from me. I said an hour and a half.
"I guess you don't see much of her then, huh?"
"You must feel pretty alone, huh?"
So basically he thought I was their because of my "loneliness"? Like yeah right, I'm so lonely I'd subject myself to an idiot like that?
But he did give me a breast exam. How unusual is that for an ID specialist? I guess maybe for a brief moment I didn't feel quite so "alone"?
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posted
I think it was a fine idea to leave the doctor that you did not agree with.
However, from personal experience, there ARE non-LLMD doctors out there that will be supportive of your condition. I would recommend continuing your search for a doctor who will take you seriously. "Go home and have a life" is a slap in the face. It hurts me just to read it.
Good luck!
Posts: 636 | From Saratoga County, NY | Registered: Apr 2008
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
quote:Originally posted by blaze: I've seen two ID specialists. When I'd told the latest one that I'd almost died a couple of years ago, his response was a saracastic, "What did you almost die of?" Keep in mind he was holding my positives.
In fact, one was even CDC positive, and I'm positive for babs, too. He told me I didn't have Lyme, and that there was no way he was treating me for babesia (he chuckled).
He then went on to set my labs aside, and said to me, "Okay, what's really going on here? Why are you really here? Who do you have in your life?"
When I told him I had my daughter, he asked me how far away she lived from me. I said an hour and a half.
"I guess you don't see much of her then, huh?"
"You must feel pretty alone, huh?"
So basically he thought I was their because of my "loneliness"? Like yeah right, I'm so lonely I'd subject myself to an idiot like that?
But he did give me a breast exam. How unusual is that for an ID specialist? I guess maybe for a brief moment I didn't feel quite so "alone"?
WHY, WHY, WHY would they not treat for a positive with Babesia??? Did they say WHY? I would be confused on that one! If they base everything on these stupid tests rather tahn a clinical diagnosis, why refusal to treat with a positive!? I would have been really, really upset and livid.
I did have a doctor say to just forget about my symptoms and they will 'magically' go away.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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quote:Originally posted by blaze: But he did give me a breast exam. How unusual is that for an ID specialist? I guess maybe for a brief moment I didn't feel quite so "alone"?
I wish you were kidding! After his comment, no way I'd let him TOUCH me!! I envisioned your experience happening to me and I also envisioned leaping off the table to strangle him!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Shosty
Unregistered
posted
You should report him to the Medical Board of Registration, or even the police, for the breast exam. Our daughter's endocrinologist did this to some teenagers and the parents called the police. The Medical Board has disciplined him and he is basically watched, always has to have an assistant in the room, etc.
Anyway, it IS possible to find primary care physicians, including HMO doctors, who are open or even knowledgeable about Lyme. And there ARE specialists, including ID's, who are also good with Lyme. It takes a lot of research and trial and error, but it is possible to set up a team within the insurance system that can help you. Hint: Many primary care doctors who are in practices with "Integrative" or "Holistic" or even who share buildings with acupunture etc., are good bets.
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blaze
Unregistered
posted
I'm not sure why he wouldn't treat me for babesia. His tone of voice was that the results were meaningless, even stupid, and we were already locking horns over my Lyme by then.
I was really upset because I had specifically asked when I'd scheduled with this ID specialist if he even believed in chronic Lyme, and I was told that he didn't like to use IV antibiotics, except in extreme cases, but he may consider orals - and I was okay with that.
I learned very quickly that he'll treat Lyme, but once you've gotten your couple of weeks worth of antibiotics, you're cured - in his eyes.
Should I report him to the medical board though? He asked prior to doing the breast exam, but this was before we had locked horns. Are ID specialists allowed to do breast exams?
I'll tell you this - I walked out of his office feeling like he'd taken advantage of the fact that I was female. In fact, he said at one point, "Do you still bleed every month?" I found the wording of that very inappropriate.
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WildCondor
Unregistered
posted
Stay away from ID ducks if you value your health and life. if you have Lyme or a tick borne illness, go to a LLMD. Choose wisely.
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