posted
I have not posted anything since the day I realized there was no hope for me and I had decided when I couldn't take it anymore I would solve the problem myself.
Then through prayer and the support of my wife and a PM from someone here I found a LLND in my state. My appointment lasted three hours and she dxd me with Lyme and CMV coinfection with possible babs. She prescribed three abx and an anitviral which I'm working my way up to. She has everyone of her Lyme patients in remission except two, she says.
She said she would "be surpirized" if I didn't notice improvement inside of three months.
I've followed so many posts where people say my LLMD says this, and someone else will come back and say my LLMD says just the opposite, no protein, lotsa protein no carbs no dairy, lotsa dairy and so on and so on.
I'm sure that if I put my protocol here some would sat that won't work and others might say that helped them.
So do you second guess your LLMD and add to or subtract from your treatment or just hope they have had success doing what they are doing and believe them and comply.
Right now I'm hoping what my LLND told me is true, She is the first doctor that listened to everything and could answer all of my questions. She addressed herxing and the three forms of the Bb and what to do when we get to certain points in treatment. It made me very hopeful. I really am being compliant in hopes this will work in the way she said it would.
What are your thoughts. Trust the professional or treat based on what you read here?
P.S. a week into the treatment I caught the cold from hell. Its not a herx, my whole family and half of my students have it, it makes the herx that is probably coming so exciting.....but some say catching a cold is a good thing, it means you are getting better or at least your immune system is.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
It's important to be an informed consumer, regardless of whether it's your health or a car you're buying. You need to understand that when you work with your doctor, it's a partnership, not a dictatorship. They don't have all the answers, and neither do you, but as a team, if you both educate yourselves (The doctor usually has plenty of experience and has their "set ways" to some degree). Your research, questions and decisions can bring "new" ideas to the table for your specific case.
Different patients are suffering from different infections, toxicity, or a range of other things. It is a systemic illness and different people must go through a "revolution" of sorts, to figure out exactly what is wrong -- often we don't ever seem to figure out what is wrong because so little is known about some of the issues we face.
Therefore, different people are on different programs exploring what fits them best. Financially, being sick is expensive, period.
You can never definitively know what the outcome will be of a particular protocol. Ultimately, you must decide whether you feel the physician has the qualities that have your best interest in mind. Different physicians have different levels of skill. I treat doctors like I treat buying a car or house. I do my homework. I want to know the frame, engine, interior material, it's performance, the saftey features -- I want to know everything I can possibly learn.
Ultimately though, no doctor and no car is perfect - but you can find someone who you think has the best probability of getting you well, especially if you work as a team.
I hope that helps you to understand a little more.
-------------------- 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
please others chime in here
Posts: 199 | From utah | Registered: Jan 2009
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
I have always thought the best approach is getting a doctor that YOU believe in, and sticking with their advice on treating lyme plus co-infections for at least 1-2 years.
Because even the experts do not know everything about these complex diseases, but they do have clinical experience, and the doctor-patient relationship is important in such a complex thing like tick-borne illnesses.
This LLND sounds great, hope you can stick with it through better times, realizing that for some, there are some bumps along the road to better health.
Posts: 2557 | From home | Registered: Aug 2006
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
I'm so happy for you and thank you for posting about it!
I agree in that there are SO many different approaches to this disease and I don't think there is only ONE particular approach that will get you there.
I haven't trusted doctors since 1997 when I was really ill and the only thing they could come up with was CFS. So I've been doing it on my own. course then came to find it's been Lyme all this time and I'm tired to the roller coaster where I can feel good for a while and then crash for a few years.
It's exhausting! So, I am going to trust my new LLMD with all my heart and do exactly as he says (like you are doing).
I know my LLMD has cured LOTS of people with Lyme too and many I've spoken with here on LN that have seen him have seen improvement within 3 months like your LLND said.
Oh, we must have the same cold that you guys do. My 7 year old had the fever/cold last weekend, then my 2 year old and I got it, we're trying to get over it. But I don't think my sinus' have hurt this badly in awhile!
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Wow! You really lucked out with your LL ND.
I think you can focus on that plan now and not second guess.
Some of the LL NDs are superb and she certainly has done her homework. Many NDs are not lyme literate so it's great to hear that she shines.
Oh, a ND will be able to help you avoid a harsh herx. They have great tools at their disposal and are terrific at liver protection. Massage will help, etc.
This does require a lot of patients with very little wiggle room. Still, an ND can help so much with the bumps along the way.
posted
Glad to hear you found a great LLND to work with! I know having a great LLMD has given me a lot of confidence and hope.
To answer your question, I think I follow what my LLMD tells me most of the time. The few times I have thought to do differently, I was wrong. Not to say that I don't scrutinize my protocol. But I have seen a lot of success with it, so I stick to it!
I don't post here too much, but I still read lymenet religiously and research everything about lyme like a maniac. But I apply the same scrutiny I bring to my treatment to everything I read online. And I ask a ton of questions at each visit. You still need to be your own advocate, but at least you're working with someone who has tools to help you.
Wishing you good health!
Julie F.
Posts: 67 | From SF Bay Area | Registered: Jun 2008
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I'm glad you're still with us!
It's not easy but no one said life here on Earth would be easy...
In any case, it's good to have a doctor's help & support. It's just that some of us have had years of experience in dealing with their own particular issues in regards to Lyme & the co-factors.
Some feel more comfortable doing their own research & making decisions. Others feel more comfortable with a doctor's help. It's all about the process toward some kind of wellness.
For some people, the standard drug therapies don't work - so, we seek alternative methods. It's really confusing at first. In time, you have to find what seems to work best for you as an individual. There are no easy answers for chronic Lyme.
I hope you will get well quickly with your treatment.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I've always said (since I learned it the hard way) you are in charge of your own healthcare. I don't take doc care as the gospel.
They are not gods. They can't always perform miracles and they don't always have the answers.
So I educate myself and use my docs as a tool. My PCP knows that and is comfortable with my being in charge of myself and my own health. I know, I'm blessed that I don't have one of those erragant (sp)doc.
Secondly, I've learned they is not a known cure for lyme & company at this time that has been made public or a definate for ALL patients.
One man's cure is another man's poison. That's why you see everyone all over the place in their treatment and recovery or not.
If it was so easy, there wouldn't be thousands and thousands of us here over the years looking for the answers.
Sure there are many that have been "cured", many in remission. But there are many more that are fighting everyday to get ahead.
It is strange that there are so many different protocols. We just don't have a one size fits all. Some day, I pray.
I believe there are two great famous lyme literate doctors out there right now that will figure it out someday. I keep waiting for that day.
Don't get frustrated. Patience my dear patience.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Many illnesses have many different influences and various solutions - and not all patients respond the same way to the same treatment.
Lyme is not the only one. But is sure can be very frustrating when we just want to be well again to have such a complex maze.
posted
I wonder if doctors from the west treat patients form the west better than doctors from the east might or vice versa. My doc says she has seen great success out here with the treatments she uses, that's encouraging for me. Maybe geography, environment and genetics play a very large role.
Posts: 199 | From utah | Registered: Jan 2009
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I take the antibiotics, the supplements, follow the diet she suggested (most of the time), exercise like she said and keep the faith (also dr.'s orders).
She was right on with my bart diagnosis before positive testing.
She is also in remission from Lyme & co and knows first hand what it is like to suffer like we do.
Anything that I have questioned in her treatment she has explained fully why she chooses to do it her way (as opposed to things I have read on here).
Bottom line...you know how you feel. If you feel her protocol is not working after some time then by all means bring it to her attention and let her know your thoughts.
It seems like you have found a great dr. who will listen to you, so communication is there for you.
Glad to hear you have found a dr!
Posts: 193 | From New Jersey | Registered: Oct 2008
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posted
If you like and trust your doctor then follow their protocol.
Especially as a new patient it is best to give the doc a chance if they have experience in tick-borne diseases.
If you can't tolerate the meds prescribed or don't seem to be getting better in say 6 months -- then you are going to have to do some research.
Patients who don't respond quickly are the ones who have to read and study and question everything. There is usually a missing piece that needs addressed.
It is always good to understand what meds you are on and why the doc prescribed those particular meds. And you need to be aware of potential side-effects. But it is not healthy to obsess over your illness.
It sounds like you found a good doc. I am happy for you. But if you have questions about meds and herxing etc, then please come back and ask all the questions you need.
I hope your wife goes with you to your appointments. It is very important that she get involved especially since you may have some issues with depression. We all want you to get better and supportive family can help make that happen.
Other reasons people may not follow their docs suggestions may be because of finances or problems with insurance. Sometimes you have to make choices that either delay treatment or are not the first line approach.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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bwillis,
You "wonder if doctors from the west treat patients form the west better than doctors from the east might or vice versa."
I think it has to do with your particular doctor and her being a ND, too. They have more freedom in some states as they are under a different licensing group. They also seem to be more into finding the underlying problems than most GPs.
In my state, Oregon, no MD is allowed to treat lyme disease and, while there may be one or two who know about it or who may work quietly with a patient who is seeing a LLMD out of state, any MD who tries to treat beyond a couple of weeks risks having their license revoked. It has happened more than once.
Lyme patients in this western state are at a clear disadvantage if any emergency comes around, too. There have been many ER disasters and many snide comments from ER doctors for anyone who even mentions that lyme is part of their overall dx - even if they are in the ER for something unrelated.
While, on the books, there are some state agencies that recognize lyme, the Oregon Medical Board is not one of those.
"There is no lyme in Oregon" seems to be the mantra chanted at every medical gathering for it's the automatic response of many doctors, even when presented with a patient who has a bulls-eye rash.
---
I don't think you posted it, but from your note, I'm glad to see that your doctor is a member of ILADS and frequents their gatherings and communicates with other ILADS doctors.
That distinction helps others know more about your choice and the professionalism of your doctor.
Cass A
Frequent Contributor (1K+ posts)
Member # 11134
posted
Trust--and verify!
At Lymenet,you have the advantage of hundreds of people at any one time who are doing one thing or another that you may be doing or may be interested in.
With about 500,000 separate posts in a searchable database, you can find out about just about anything related to treatment!
You may find out about something that makes great sense to you--then why not ask??
Personally, I wouldn't combine Salt-C and Mepron/Zith, for example. Tooooo distant and possibly very dramatic in its consequences!
I find keeping a daily log very helpful, as sometimes changes get spread out over quite a long time (not to even START about memory problems!!!)
Sometimes, there is no compelling reason NOT to add a suppliment, in my opinion, like I'm adding in Niacinamide about every 3 hours, as it's not directly attacking the disease state itself, like the treatment from my LLMD is.
There are some protocols that recommend NOT supplimenting a lot--the Marshall Protocol and the Bionic 880 doctor (Dr. W.--who wants people to back down or off their suppliments AND any antibiotics before seeing him) are two of them.
In the final analysis, you are responsible for your own health.
Best,
Cass A
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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bettyg
Unregistered
posted
welcome back willis! i've missed you; as you can see; we ALL have missed you. glad to see you are getting more questions answered.
boy, we all wish; 1 method did the trick for all of us! but each of us is unique with all our other illnesses/diagnosis. hang in there; things are finally LOOKING UP FOR YOU!
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