posted
I just got back from my first appointment with my LLMD. I'm not sure how I feel.
My appointment was at 10:30am, and I didn't see her until 12. I understand she is busy, but I just don't think there's any reason for that kind of wait.
I have to admit, I felt rushed. I had a list of questions, my symptoms, and a copy of my pain diary, and the only thing she took was my symptoms.
She thinks I have Fibromyalgia, in addition to Lyme because of all my trigger points.
She took the blood for the Igenex test (just Lyme for now), and I have another appointment in 3 weeks to discuss test results.
She told me this new diet to go by (I'm not happy about it, I NEED my sugar). She seems like she is very into the Holistic approach and gave me Cats Claw, COQ10 Fish Oil, and Foot Pads to detoxify for right now. She recommended exercise, massage, and acupuncture.
My fianc� told her ``there's no way she's going to follow that diet 100%'', but she was pretty strict about it. I don't mind doing the South Beach Diet, but I'm gonna drink my red wine on the weekends hahaha.
I have some questions that she really didn't answer, but I am confident that someone here will have the answer.
If I take the supplements and everything and start feeling better, when does my life return to ``normal''? Will I have to take these supplements forever?
I'm sorry if this post seems all over the place, I just got in and I have a million things running through my mind.
Any opinions?
Did I choose the right Doctor?
Posts: 64 | From PA | Registered: Mar 2007
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Did I choose the right Doctor? dosent sound like it
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
Not to raise any issues but the diet would not hurt - I have found that I pretty much converted into the no sugar low carb diet after about a year of treatment - It has helped a lot to eat a very healthy diet - when you have been as sick as I was you come to realize that you will do anything that will help the healing process.
Posts: 582 | From milwaukee wi | Registered: May 2005
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SForsgren
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posted
Sounds like her recommendations aroud diet, etc. are good ones. It all depends on how much you want to get well. There is no easy path. If you choose to continue to drink, etc., your recovery will likely be slowed notably.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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map1131
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Member # 2022
posted
That wait was rude. Her not spending enough time with you when you waited that long is rude also. I'd give her the next appt to see if today was just one of those bad days that humans have.
Cats Claw is used by many in place of abx to kill off lyme/co-infections. Have you done abx prior for lyme? That doctor did give you some very good advice about some supps, massage, acupunture, diet and detoxing.
It's going to take more than just doing abx to get well. Is she preparing your body with all these detoxing methods and maybe going to add abx later?
I'd write down some very specific questions in the next 3 weeks. Tell her at the beginning of your visit you will have questions at the end of the appt, if she doesn't cover them. Prior to going to the visit, narrow it down to your top 5 questions.
I completely understand you are overwhelmed with questions about everything now. To get to normal again is not going to happen fast enough for you.
There's not a magic pill and it does seem to be a process that involves trail and error methods of treatment whether it's traditional or holistic approach. A good rule of thumb that I've heard more than one doc say is, to give meds/supps 2 months to see if it makes a difference before discontinuing.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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"Successful control and elminiation of a Candida Albicans overgrowth requires a multifaceted program as described below. Failure to follow ALL the steps simultaneously will result in slow progress and will lengthen healing time significantly. The program should be tailored to the individual and must balance the need to eliminate the Candida and deprive it of its food source while insuring proper nutrition for the individual."
Five Steps to Candida Elimination:
1. You must starve it into submission by eliminating its food source.
2. You must kill it with anti-fungal herbs and supplements. [e.g....garlic, onion, caprylic acid, Pau D'Arco capsules or tea, clove, grapefruit seed extract, olive leaf extract, oil of oregano, tea tree oil, Echinacea, Goldenseal, black walnut, MSM, barberry root, uva ursi, neem leaf, biotin]
3. You must reestablish the proper balance and quantity of probiotic bacteria in the digestive tract. [...multi-strain lactobacillus acidophilus and bifidus capsules with FOS should be taken between meals to maximize repopulation of the digestive tract by beneficial bacteria.]
4. You must reestablish proper levels of all B vitamins (yeast free) and utilize other immune enhancing supplements to boost immune system function. [e.g ... B complex vitamins (yeast free), biotin, beta 1-3 glucan, colostrum, maitake mushroom, vitamins A, C, E, zinc and selenium]
5. You must cleanse and heal the digestive tract to promote proper elimination of toxins and Candida and assimilation of nutrients. [e.g...chlorophyll, MSM, omega 3 fatty acids found in flax seed and salmon oils, GLA found in borage, evening primrose and black currant oils. Pantothenic acid, digestive enzymes between meals]
=============== You DON'T want to add systemic yeast to your list of troubles!!
That doesn't sound like a very good LLMD. Did she come highly recommended by at least THREE happy satisfied customers??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Randibear, she is supposed to be a highly respected LLMD. That's why I'm so confused. I thought I would feel like a weight was lifted off my shoulder after this visit, and I didn't. That is so discouraging to me.
Pam, I was really expecting her to take her time, answer questions, etc. After going through this for 5 months (I know that's not long compared to some people) and having no answers, I thought she would have them for me.
She said that my Western Blot results from Quest weren't "substantial" or something like that. I don't know if that meant that it didn't look like Lyme or what?
I asked what her success rate was, and she said 99%, but a lot of the people in the waiting room looked like they were having a rough time, some using canes. I'm trying not to let that affect me though, because I know that everyone is different.
I'm under the impression that she wants to do supplements now, and then add abx when we get the results back.
Maybe I expected too much, I just wanted a timeline of treatment,I don't want to be doing this forever. I'm just so, so frustrated right now. In the next couple of years I'll be getting married and starting a family, and I feel like I have to put that on hold
It didn't even sound like she was 100% convinced it was Lyme. When I asked if my symptoms were indicative of Lyme, she said "they can be".
Posts: 64 | From PA | Registered: Mar 2007
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
We cannot expect the doctors to solve all of our problems. We have to take control over our path and care.
My LLMD is usually 1-4 hours behind schedule and she is still one of the best there is. Some things you just have to accept. These people are pulled in ten different directions and it is a job that most people could not even bear - caring for people with Lyme disease. The stress is amazing. You might be able to get a doctor that is on schedule, but will they be able to help you?
I would, however, expect her to respond to all of your questions. You might tell her that you are not finished and that you have additional questions that need to be responded to and see how she reacts.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
I think it can be a shock to the system and exhausting to expect to overhaul your diet all at once. Why don't you pick one item a week and work on it. If you eat a lot of packaged foods, find a healthier brand (ie. no hydrogenated fats, no fructose corn syrup). From there, move to less sugar (cut out the artificial sweeteners). Cut your sweet intake by a quarter, then another quarter. Eating three meals a day plus healthy snacks will keep your blood sugar from spiking and you will crave less sugar.
Posts: 984 | From San Diego | Registered: Nov 2006
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TerryK
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Member # 8552
posted
Is she an ILADS member? If not, then I would urge you to find another LLMD who is. Best to stick with the group of doctors who know the most about lyme and co infections. There are too many unknowns about diagnosis and effective treatment and the ILADS doc's have the most experience and are learning the fastest since they share info, unlike those who are out there on their own.
Symptoms of fibromyalgia can be the result of lyme disease. I am not a doctor but I personally think it is too early to state that you have fibromyalgia because fibromyalgia is a syndrome that is a label for symptoms with no known cause and if you have lyme disease then you do have a cause for those symptoms. At this point she does not know if you have lyme disease but the fact that you have symptoms of fibromyalgia is an indication that you may have lyme disease.
She is right, sugar is a no-no if you have lyme or fibromyalgia. It lowers your immune system. If you feel that you must have sugar then you may have reactive hypoglycemia or some other blood sugar abnormality which could be helped greatly by avoiding sugar. Drinking alcohol is very bad for those with lyme. The supplements that she recommends are good if you have lyme or fibro except I'm not so sure about cat's claw. An extract of a special form of cats claw called samento won't help you if you have a babesia infection until the babesia infection is dealt with according to one of my doctors. I don't know if that also applies to cats claw or not.
You say they took blood for just IgeneX - lyme for now. IgeneX is an appropriate lab for lyme and co-infection testing so that's good however, I'd be VERY concerned that she didn't mention testing for co-infections. A co-infection could test positive but you could be sero-negative for lyme or vice versa. Blood tests are not very accurate for any of these infections but if you have a positive test for any one of them, the liklihood that you have more than one is high and can help with a clinical diagnosis.
I'm also concerned that she didn't spend much time with you on the first visit. My understanding is that most LLMD's will do a very extensive first appointment so that they can look for all known causes of your symptoms. Mine certainly did. It's part of the differential diagnosis process and very important in lyme since you can have negative tests and still have lyme and/or co-infections because the tests are not very accurate. Lyme and co-infections are diagnosed clinically which requires careful evaluation by a very knowledgable LLMD.
If you go back to her to get test results be sure to post your igenex results here so that we can help you with information about specific bands in case she is not aware of how to read the bands.
Personally, I would not trust anyone but an ILADS doctor to rule out a diagnosis of lyme. It is very tricky. Same for treating lyme and co-infections. Very complex with lots of twists and turns making it easy to fail treatment with someone who does not know what they are doing.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
Yes, a 90 minute wait for a morning appointment is a loong wait. Imagine what the 4:00 person is up against.
I just saw my llmd, and had a 60 minute wait. That was the very first time in 2 1/2 years he was more than 15 minutes late. So, it happens. Just hope not too often.
You "need" your sugar? Welcome to the world of candida. Most of us learned about stevia, and gluten free, low natural carb (that is brown rice, and more rice.......not doughnuts, pizza, yummie pastries, brownies, cookies....aaaah, I could go on!)
And eliminating dairy, but doing yogurt ......just pray you do not have to do goat yogurt. That takes imagination to enjoy.
And learning a thousand ways to make the same salad and veggies.
etc.
The supplements are a normal part of the treatment. Dr. B. Dr/ C. and many here recommend them. The diseases deplete the body.
The only thing I would also add would be probiotics even at this time to build up the GI.
Lots to learn.
The "probably" and "maybe" are diagnostic terms, since lyme is a clinical diagnosis, and this is a word written on records. It is like a hypothesis. My own llmd wrote that even though it was IgG CDC positive, IgM indeterminate, and I was a flaming neuro.
That's just how they approach it.
The fibro diagnosis with llyme is interesting, but I woud not put weight on it. It actually may allow her some leeway, and it may represent a co-existing condition.
So, as always, wait and see. She really could not talk much until she had a better idea from other test results. My first exam was just that. numerous exams, history, and the final thought that it was a high likelihood, but had to wait for bloodwork. Not much he could say at that point.
And I was hoping for treatment, but had to wait. I was barely getting by. They do have legal aspects to consider.
Just wait and see. I think your wait could be a "yellow flag". But perhaps the people before you had more immediate problems. It could have just one of those days.
The rest was normal.
She would not have been recommended if she did not have abilities. Those people with canes, etc., are in the process of healing. That is why they are there. You will not see the healed ones, because they are gone, or only back infrequently for a follow up.
Northstar
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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posted
Terry, Yes she is a member of ILADS. I was very concerned when she said that she wasn't testing for co-infections now, but I didn't push any further when she said that it would be better to just test for Lyme first. Should I call and say something, or just wait until my next appointment to get the test results.
She also took blood for some other tests that she is sending to Lab Corp. She said one of them was for Mycoplasma, but I don't know what that is.
Northstar, you are right about the people with canes. I never looked at it like that. I think all too often, we don't hear from the people who are well. A few of my fiances friends have had Lyme, and he said they took their abx and they are fine. We don't ever hear from those people.
She seemed to know what she was talking about, but when I asked her about my constant headaches and eye pain, she said that was normal with Lyme. I mentioned reading about PTC and she said that she wasn't concerned about that and didn't think I needed a repeat MRI (I had one in December), or a Spinal Tap (she said that spinal taps often give false negatives, so she wouldn't want me to go through something so risky if I didn't have to).
While I was in the office, I could feel my tongue going numb again, so I asked her if that was normal with Lyme and she said ``it can be''.
I just wish I had a definite dx.
She also told me that I have Chronic Lyme, even though my infection was likely either in the summer of 06 or in October. My first symptoms were on November 23, or whatever Thanksgiving Day was. I thought that would be early Lyme?
Posts: 64 | From PA | Registered: Mar 2007
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posted
she said that she wasn't concerned about that and didn't think I needed a repeat MRI (I had one in December), or a Spinal Tap (she said that spinal taps often give false negatives, so she wouldn't want me to go through something so risky if I didn't have to). I wholeheartedly agree!
While I was in the office, I could feel my tongue going numb again, so I asked her if that was normal with Lyme and she said ``it can be''.
I just wish I had a definite dx. The Igenex test will tell you a lot more than that Quest "joke" of a test.
She also told me that I have Chronic Lyme, even though my infection was likely either in the summer of 06 or in October. My first symptoms were on November 23, or whatever Thanksgiving Day was. I thought that would be early Lyme? It's at least "disseminated" lyme. If it's not caught right away, it will take longer to get rid of.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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valymemom
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Member # 7076
posted
I did not get treatment until 6 months after removing my tick. I was treated for a 14/15 months......the last two were symptom-free.
I know it is very frustrating; you'd like a timeline; you'd like medicine and supplements to heal you.
This disease is so very complicated and it affects each soul differently. I don't say this to scare you - I say this to let you know that you will need to do your homework and listen to her/him. It sounds like your llmd wants a picture to form from the testing first. One son's llmd's recommendation is to follow a diet that fits his bloodtype.
Give your llmd a chance. Many treating doctors incorporate alternative protocols. I believe they are constantly learning/seeking answers for us. What works for one does not work for another.
This is not an infectious disease doctor or neurologist who would tell you that nothing is wrong with you and your complaints are just background noise.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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Andie333
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posted
Robin,
I just sent you a private message
Andie
Posts: 2549 | From never never land | Registered: May 2005
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posted
Part of lyme treatment the doc does, part of it you will have to do. So, find some patience, understand that this is not a cut and dried situation, cookbook medicine, and you are lucky to have found a doc who will treat you at all. If a patient is non-compliant with diet restrictions, the doc is going to think they are not doing their part. Yes, it is hard, but needs to be done.
One of the reasons a doc may keep you waiting is that the patients ahead of you have a whole lot of questions too and cause the appt. to run long.
Posts: 8430 | From Not available | Registered: Oct 2000
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
quote: Yes she is a member of ILADS. I was very concerned when she said that she wasn't testing for co-infections now, but I didn't push any further when she said that it would be better to just test for Lyme first. Should I call and say something, or just wait until my next appointment to get the test results.
I'm so glad to hear that she is a member of ILADS. If it were me, I'd wait and question her about it when you see her. You *will* need to be tested and/or treated for co-infections. My understanding is that some of them need to be treated before or while you are treating lyme.
Keep learning so that you can ask the right questions and keep asking questions. Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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