posted
I went to see a RNP today who was referred to me for use as a Primary Care Only. Supposedly she is very compassionate and is very good with pain management. Well I walked out of her office in tears. Most of what I got from her was alot of pushing to see a Therapist "to help deal with the pain because Lyme and Fibro, though they are real carry a huge Mental Health peice" She tried to push me onto Savella even after I told her I am not Depressed and dont want to mess with my head in order to alleviate pain. I am alredy on Neurontin and weaning off for unsat side effects and not much help with the pain to begin with. She gave me Ambien and told me to stop drinking water at night and use Lozenges because it makes me have to get up to pee. I dont see the problem with me having water at night if I am thirsty. this is the least of my problems. LOL and I culd go on with the other crap...but she then told me I was fat and needed to lose weight (I'm 165 and 5'5" and I just lost 30 lbs after the birth of my son in Aug I don't disagree that I need t take off more wieght but Im not super wman and Im certainly not FAT) and that the only way I am going to feel better and the pain will go away is to force myself through thhe pain and exercise. Now I try and go for walks and was walking up to 3.5 miles a few times aweek until my infection flared afer giving birth. Now if I go more than a short stroll I look like The hunchback of NotreDame, drgging my leg behind me nearly in tears, and I like to fancy myself a pretty tough cookie. So after venting, this brings me to my Question, Has anyone actually done this push yourself to excerise thing? Has it helped? My desire ito do so is there, but I was told I could flare worse by my LLMD if I push it. Experiences?
Posts: 80 | From RI | Registered: Jun 2010
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posted
Don't know if you will flare but you could exhaust your self and then might take a couple of days to recover.
How long have you been dealing with Lyme. Took me several months to get to where I could workout. Took a couple more months to cut sugar and simple carbs.
Took another month to back off of caffeine. I do not think I could have done it all at once.
Perhaps picking the easier changes and getting some success and then do what you think you can handle next. Many of us procrastinate because our energy level is so low and our minds fire so slowly so it takes a while to contemplate making the changes.
Most of us never thought we would be doing many of the things we are now committed to.
All the Best, MattH
Posts: 607 | From Houston Texas | Registered: Mar 2011
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posted
I believe exercise was a huge part of my success in treating.
Not cardio, rather as Dr. B suggests in his guidelines, strength training and cardio.
I did have to push myself when I was really sick just to get out of bed. So I did push myself to exercise, but other than exercise, I did not push through things, I rested.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
yes, i had pain after exercise a weird heaviness in hands and achy feet BUT it is good 2 get weight off joints..no doubt hormone rush after pregnancy adds to your pain, i know symptoms can be cyclic around periods
Posts: 4 | From California | Registered: Nov 2011
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posted
Thanks everyone. I just started juicing and have been pretty conscentious about what I eat, though I am human and have my moments. I suppose I will start with maybe just some gently yoga. I think what got me mst was the delivery of the info given and the assumption that I was depressed. I am actually the happiest I have ever been despite battling this illnes for 6 years. It is draining but I mnage to be happy most days. Oh well. I guess baby steps Ill start with the yoga. Thanks!
Posts: 80 | From RI | Registered: Jun 2010
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Keebler
Honored Contributor (25K+ posts)
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posted
- There are so many things you were told that I have a huge problem absorbing all that I see wrong with this picture. I also have trouble reading all your wrote so may have missed some detail.
First of all, you will want to carefully research Ambien before you decide whether or not to take it. Ambien nearly killed me in several ways, even at low dose.
First, I hope you will consider safer methods such as B-6; Holy Basil (Tulsi); melatonin; Milky Oat Seed; Zizyphus or Fu Shen . . . dimming lights early, etc.
Some can tolerate Ambien but, for many, it can cause major problems, especially if you are taking care of an infant or toddler.
Various reports about sleep walking, sleep driving & accidents, various levels of amnesia, and worse have been connected with ambien use.
Second, with lyme, often comes weight gain (due to adrenal and liver dysfunction) but it is not necessary at all why most people think. The number on the scale DOES NOT MATTER right now.
In fact, I would put your scale away.
Focusing on healthful foods, and enough of that (yes, enough - Veggies mostly but enough PROTEIN and good FAT with every meal & snack) is key but
aerobic exercise is not recommended when one has active (even if chronic) infection. Now, a few folks can continue but, as you say, you can barely walk much right now. Where you are needs to be understood and honored.
OTHER methods of exercise are suggested, however, but never at a pace that exhausts you. Of course, as SixGoofyKids explains, just to be alive with lyme, one has to push to move. But not at all the kind of pushing the RNP has in mind.
Slow and steady is the key. A day off in between.
Things that are okay at YOUR OWN PACE: weight strengthening; Pilates; Restorative Yoga; Qi Gong; Tai Chi; gentle water exercises (but chlorine can be harsh).
It's better to do one minute, 5 times a day than 5 minutes all at once if that is too much. Sometimes, increasing one minute a week is all that is manageable. Or more. Or less. You will learn how to judge for yourself.
Adrenal support will also help manage weight & help with sleep and endurance.
Yes, IMO, I say do drink some water at night. Your body really needs it. Of course, you might adjust the timing so you can sleep through the night but you still need some water in the evening and some before bed.
Lozenges instead of water when you are thirsty at night invites gum disease and cavities. I am astonished.
You should check with your LLMD about all this. Quite frankly, I think this RNP is not at all a good choice for someone with lyme and could be detrimental.
I certainly would not hire her again, were I to be in your shoes (mainly because I've been in your shoes with ignorant doctors so often). I would find someone better suited and ILADS-educated, indeed. Can your LLMD recommend someone?
Ask around at the local lyme support groups.
I'll may be back later with some links to explain some of my comments. -
[ 11-29-2011, 11:49 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- For the pain, are you taking enough magnesium glycinate and fish oil?
Curcumin or Turmeric?
LIVER SUPPORT (such as milk thistle, etc.) is key to lessen pain, too. A congested and stressed liver will cause pain (and ambien can stress the liver even more).
Are you gluten free? That can help decrease pain for many.
Corydalis & Angelica herbal combination can increase your comfort level. Corydalis also helps allow your body to sleep.
(Seven Forests is one brand of) Zizyphus, and also Fu Shen, both of which are also helpful for sleep.
Yoga poses, Tai Chi, Qi Gong (and maybe some gentle Pilates moves) are also designed to help calm what the Chinese call "shen" (heart spirit) so that sleep will be easier.
You might also want to explore working with a LL naturopathic doctor or LL acupuncturist. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I agree with all that Keebler said. I also must say that Low Dose Naltrexone has helped me immensely with joint pain and energy. Also magnesium.
Yes, I have had to force myself to get moving sometimes, but I don't do it if I am in physical pain, just if I am in a fatigued or depressed state.
What has been a lifesaver has been my Ipod. I listen to music and I kind of go to another place, as they say. Time flies. And I always have problems for the first 5 or 6 minutes of exercise, but then I get more energy and can continue without a problem. I'm one of the people here who still does aerobic, however I am not in an active flare right now (knock on wood).
Hang in there. And congrats on your new baby!
-------------------- Country Mouse
6/2011 IgX: IGG: 31 IND, 41+++, 45+, 58+ IGM: 31+, 39 IND, 41 IND, 83-93 IND Band 31 confirmed to be Lyme epitope by Igenex 7/2011
8/2011 IgX: POSITIVE IGG: 31+, 34 IND, 39 IND, 41++, 45+, 58+ IGM: 31+, 34 IND, 39 IND, 41++, 83-93+ Posts: 169 | From Western Mass | Registered: May 2011
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Keebler
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posted
- Just came back to say that INFLAMMATION is also a big culprit in weight gain. Turmeric or it's stronger extract, Curcumin, can help there but so can good liver support.
I was thinking about the water. Be sure to start early in the day with lots of water. First thing when you get up in the morning, after checking on baby, is to rinse mouth and then drink a tall glass of water.
And, if you have to get up in the middle of the night to use the bathroom, you know, lyme often causes a kind of bladder irritation, anyway, so it's not that unusual. It's still better to maintain hydration.
It may be that by evening you are dehydrated and want more. Still, lyme requires that we drink water about every hour we are awake. It helps the body to detoxify. And night time is key detox time.
Glad that Country Mouse chimed in about Low Dose Naltrexone (LDN). I've not tried it but some have really benefited from starting VERY low and going slowly.
There are many threads here about that and your LLMD should probably have some familiarity with it. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- You might ask your LLMD if she/he knows of a LL naturopathic doctor to help with adjunct care. Or you can find one through:
[ 11-30-2011, 12:45 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- As you were offered antidepressants and ambien, I assume you are not nursing. If you are nursing, it's best to consult a professional trained in this field for advice on what herbs / supplements are good for you and for the baby.
=======================
Rather than avoid life supporting water in the evening, .
d-Mannose is a nutritional supplement that can help the bladder calm down.
posted
Keebler. Thanks for all of the support and great info. I Laughed at her over the Ambien thing. I wouldn't dare...I pretty much laughed at everything that she had to say though I was feeling enraged as well. I am currently on D-ribose, Magnesium Liquid, B12 inj., Nt energy and transfer factor multi immune, per Dr B. I would never take a lozenge at night...completely hanos. Who wants that when they are thirsty? LOL I drink water all day and also I am juicing but also eating a well balanced diet. I was off gluten 2 years ago and am considering strongly returning that way very soon. I am going to def talk to my LLMD about the Lo dose Naltrexone. I have heard some really great things. I really only met ith this Doc becuse per my ins. co. I need to have a primary care. But heard she was good...the person who referred me feels awful...but she also dosent have Lyme etc so she may have had a positive experience. I am doing thhe best I can right now with supplements, my Mom should become a Natropath, I swear. She has Lyme Babs and BArt and is my main source of support with this. They finally just started a Lyme Support Group in my town which I will be atending this month. I am sorry if my posts are little tough to understand as I am in the midst of a Neuro Herx so im unclear and having alot of emotional issue along with it, though I believe they re completely related. Im a very happy person just having the good ole Lyme Rage and Crying I backed off on my dose last night and this morning to give myself a rest but will be back at it tomorrow. Thank you again for all of your support and info. It is very appreciatedd and does not fall on Deaf ears. I will give some of these a try.
=)
Posts: 80 | From RI | Registered: Jun 2010
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Keebler
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posted
- Lucky,
I have to break up your post to read it. My eyes really need the white space breaks (as do most others here). ----------------
Lucky writes:
Keebler. Thanks for all of the support and great info.
I Laughed at her over the Ambien thing. I wouldn't dare...I pretty much laughed at everything that she had to say though I was feeling enraged as well.
I am currently on D-ribose, Magnesium Liquid, B12 inj., Nt energy and transfer factor multi immune, per Dr B.
I would never take a lozenge at night ... completely hanos. Who wants that when they are thirsty? LOL I drink water all day and also I am juicing but also eating a well balanced diet.
I was off gluten 2 years ago and am considering strongly returning that way very soon. I am going to def talk to my LLMD about the Lo dose Naltrexone. I have heard some really great things.
I really only met ith this Doc becuse per my ins. co. I need to have a primary care. But heard she was good ... the person who referred me feels awful ... but she also dosent have Lyme etc so she may have had a positive experience.
I am doing thhe best I can right now with supplements, my Mom should become a Natropath, I swear.
She has Lyme Babs and BArt and is my main source of support with this. They finally just started a Lyme Support Group in my town which I will be atending this month.
I am sorry if my posts are little tough to understand as I am in the midst of a Neuro Herx so im unclear and having alot of emotional issue along with it, though I believe they re completely related.
Im a very happy person just having the good ole Lyme Rage and Crying I backed off on my dose last night and this morning to give myself a rest but will be back at it tomorrow.
Thank you again for all of your support and info. It is very appreciatedd and does not fall on Deaf ears. I will give some of these a try.
(lucky8711 from RI) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- [Your posts are not hard to understand, but hard to read. It's just one big sea of swirling grey if it's more than about 3 lines at once. Many here have similar challenges with reading large blocks of types. It's not what you write, just the spacing.]
ADRENAL support can really help the "lyme rage & crying" but sometimes it's good to just let tears flow.
For anger, that often goes with all this. Still, if you can move the anger in creative ways, it can be more "fun" - Singing at the top of your voice, inventing new dance moves or wild art . . .
FISH OIL can also help tremendously. I can't find the article or video link but about a year or two ago, in NYC, there was an experiment with taxi drivers who lost their temper with challenging passengers.
At the end of one week, the group getting the FISH OIL were cool cucumbers with even the most irritating passengers. It was amazing to see.
In Chinese Medicine, a "hot" "stagnant" liver (as with toxic infections & inflammation) will also produce bursts of anger. Liver support really helps, as can acupuncture and Tai Chi (to ease muscle tension and help move the irritated energy out).
I'm glad to see you are on board with a good LLMD, a wise mother who keeps learning (but sorry she is going through all this, too), and a good head on your shoulders.
Do take care. Hugs. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- Afterthoughts (promise I'll stop with this one):
Some of the supplements you take might interfer with sleep. D-ribose can do that for some so you might be sure to get that in before 3 p.m. or maybe even noon.
I'm not familiar with the others but if something gives you energy just be sure to put that to use earlier in the day to test it out.
I could not find exactly what "Nt energy" is - but that would raise questions for evening effects. If it contains B3 (niacin), that can also contribute to insomnia. -- B6 or P5P can calm overactive nerve fibers.
But, my guess is that the pain is what most interferes with sleep. I do hope you find more comfort soon. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Keebler...research Rember in depth.
Look at what it IS and how it works (multiple).
I think you have enough knowledge of Bb and our response that you will see connections.
Tai Chi is a good idea...very. Learn it via a DVD in the comfort of own home.
"mu"
B6/P5P/PLP may need to be taken sublingual. Our stomach acids destroy the B vitamins (not those in food, but just the supplement form).
Source Naturals "coenzymated B6".
B complex is also avail. sublingual.
Probiotics always!!!
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote:Originally posted by Keebler: I could not find exactly what "Nt energy" is - but that would raise questions for evening effects.
If it contains B3 (niacin), that can also contribute to insomnia. -- B6 or P5P can calm overactive nerve fibers.
NT Factor is a nutrient complex extracted and prepared using proprietary processes. It is composed only of food and food components listed as:
Phosphoglycolipids - includes polyunsaturated phosphatidylcholine, glycolipids and other polyunsaturated phosphatidyl nutrients.
Bifido and Lactobacillus Bacterium Growth Media
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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Keebler
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posted
- Carol, Thanks for the clarification.
Then "Nt energy" is not "Thermo-Nuclear Energy" or something exciting like that, eh?
Lucky,
I've not used it but I've read that many find NT Factor valuable. From just a glance, and with my experience taking phosphatidylcholine, I don't think that would cause insomnia. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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randibear
Honored Contributor (10K+ posts)
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posted
i'm so down right now that if a doctor told me all that, i'd probably burst into tears.
i know it, but to hear somebody just blurt it out, well that hurts.
my doctor also told me to loose 80-90 pounds but the way he said it was kind.
ambien -- no way. i just went cold turkey and got off elavil because if elt like a zombie and the dry mouth was horrible. plus i felt it contributed to my weight gain.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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I found that when I pushed it too hard with exercise some of my symptoms would flare. Of course this was initially discouraging, but with time I learned how much I could do without paying for it later! Eventually I was able to go back (almost) to my normal exercise routine.
Posts: 97 | From New York | Registered: Dec 2011
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posted
I skimmed this post, I'll go back and read it in depth later.
Ambien works very well, though the side effects are, on occasion quite severe.
It cuts down your inhibitions, so if you are frustrated, you *will* take it out on someone unless you can fight it off. Nearly cost me my marriage. I probably would have been better off to drop acid than take Ambien. On a good note tho, I slept better than I had in years previous.
I take L-tryptophan and melatonin twice a day, morning and night, and that seems to have straightened out my sleep schedule, except for bad nights when I herx hard.
-------------------- Ticks suck. Posts: 140 | From Alabama | Registered: Aug 2009
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posted
I have a question. I initially was infected with Lyme back in 1987. I worked at a hospital at the time and the doctors had no idea what the rash was (it was the classic bulls eye) at the time. I ignored it and became ill about 3 weeks later and progressively more so for the following four months. Eventually I felt better (without treatment) but during that time I was very ill - physically and mentally. It came back in 1991 and I was finally treated. Once again, I got it in 2006, fiddled around with other doctors not believing it could be the lyme again after all these years, waiting three months and finally went back to my old LLMD. Was treated and have been good until now. I have been 'sick' since September with the following issues: anxiety, depression, sweats, adrenalin rushes, back and leg pain, heart palps and irregular beats. Now however, I am experiencing joint pain and headaches with the other symptoms. I have been to a regular internist who has done many tests during the past three months and all is fine. Lyme test is negative and he says there is no way I have lyme. I just don't know what else it can be. Has anyone else gone thru this? Thanks.
Posts: 97 | From New York | Registered: Dec 2011
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I have a question. I initially was infected with Lyme back in 1987. I worked at a hospital at the time and the doctors had no idea what the rash was (it was the classic bulls eye) at the time.
I ignored it and became ill about 3 weeks later and progressively more so for the following four months.
Eventually I felt better (without treatment) but during that time I was very ill - physically and mentally. It came back in 1991 and I was finally treated.
Once again, I got it in 2006, fiddled around with other doctors not believing it could be the lyme again after all these years, waiting three months and finally went back to my old LLMD.
Was treated and have been good until now. I have been 'sick' since September with the following issues: anxiety, depression, sweats, adrenalin rushes, back and leg pain, heart palps and irregular beats.
Now however, I am experiencing joint pain and headaches with the other symptoms. I have been to a regular internist who has done many tests during the past three months and all is fine.
Lyme test is negative and he says there is no way I have lyme. I just don't know what else it can be. Has anyone else gone thru this? Thanks.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
I had no test done in 1987 - doctors did other lab tests which were, of course, fine and gave me a diagnosis at the time that I was 'stressed out'. So I dealt with it until it receded on its own (about 6 months). In 1991 when it returned with a fury, I was tested for lyme; I believe the tests were done either in California or Stony Brook in NY. I think out of all the lyme tests I have had only one has come back positive. This time around I think the tests were done again at Stony Brook but came back negative. They have also come back as 'inconclusive'. Think its time to go back to the LLMD?
Posts: 97 | From New York | Registered: Dec 2011
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Keebler
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posted
- lyme1987,
It may be best to start your own thread - just copy and paste your post so that you get the dedicated space deserved for your questions - readers will be better directed to your post and you'll have a set of replies to refer back to. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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