phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
I wish this disease was like others you get sick get treatment and slowly see improvement or die..
I can't seem to comprehend why one day or weeks you feel you are going to die then the next day you feel somewhat normal and it is wonderful...
This goes on for years.. I have actually had maybe 5 good days and think I am seeing wellness only to be disappointed and knocked back in bed..Have kept records of meds,activities, food eaten etc.. just no rhyme or reason..
Even my doctor doesn't have an answer..
Needed to Vent..tks
Posts: 1058 | From VA | Registered: Oct 2010
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posted
You've got a lot of company. Many of us have the same pattern.
It's really quite devastating actually. You get your hopes and think you're getting better only to crash to the ground again.
I've never been able to find a pattern except that I start to feel badly about 4 days after any exertion.
Posts: 88 | From NE | Registered: Apr 2012
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I would feel great for several months (way in the past) and think I was healed (from whatever it was I was dealing with..not knowing a thing about Lyme back then).
Then I'd have a flare and sink down farther down in the rabbit hole.
I agree with Milagro...no pattern, except I feel horrible after any exertion.
-------------------- aperture Posts: 551 | From Louisville, KY | Registered: Nov 2011
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It is not influenced by exercise, diet, stress ect. for me.
It makes life incredibly unpredictable and is probably the most frustrating thing about this disease (for me). It's not like you can be like, okay I have to perform really well tomorrow, let me juice more greens, take more supplements- nope doesn't work!
And of course when I overdo it in the gym or on the trail I feel fine, no consequences...
Seriously I've been trying to figure that out since I first got sick
Posts: 169 | From The Poconos | Registered: Jun 2011
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
I don't know bu it's sick.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You say: "Even my doctor doesn't have an answer.." (end quote)
Then you need a different doctor because that one is not lyme literate at all.
Frequent migration and shifting of symptoms, on again - off again, is actually a hallmark of lyme.
Sometimes, there are reasons why; sometimes there are not.
Still every LL doctor knows all this. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Just a few things (of many) that can cause worsening of symptoms: --------------
. . . Many patients have symptoms intensify or reappear with physical and emotional stress, if sleep deprived, after exercise, in a hot bath, after alcohol consumption, with fasting (hypoglycemia) or dehydration.
Humidity, low barometric pressure, cold or rainy weather can elicit arthralgias, fatigue, encephalopathy or headache.
A cold draft of air can precipitate the appearance of pain in exposed skin and the underlying bone, or even VII cranial nerve (Bell's) palsy.
Patients with poor control of symptoms abhor the extremes of ambient temperature.
Typically, heat intolerance is revealed as irritability, headache, excessive perspiration or sleepiness.
Photophobia can enhance the somnolent propensity that can occur while driving a car. . . .
. . . Symptoms vary stereotypically during the day. . . .
---------------
Note: "hot bath" and "alcohol" mentioned above. Both are to be avoided (as the author notes later in the article).
A cozy warm bath for 20 minutes max is often fine for most but alcohol never is for any lyme patient. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Thanks to each of you for your input.. I guess this is something we have to learn to live with until???
I did have a LLMD but can't afford one now. In fact I am getting more help or should I say understanding from my D.O. He is trying and insist I take the meds.. which I take but can't say any have helped..for any length of time..
Posts: 1058 | From VA | Registered: Oct 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Accept as part of lyme? Yes.
Learn to live with it? Not on your life.
There's a huge difference between the two. And so much we can do for ourselves to ease symptoms along the way.
From past experience, it's clear that you can't take the meds without the right kind of support. I hope the D.O. has a comprehensive plan to help you better tolerate treatment.
Is the D.O. ILADS "educated" and really, fully, "lyme COMPLEX" literate, understanding the science of it all and seeing the full picture?
Does he have some education in herbal and nutritional medicine, especially regarding the organs of detoxification -- and how to assess you for what is going on there and what will help your individual situation?
If not, you might seek out someone with full training in that area. See next post: -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Links to many articles and books by holistic-minded LL doctors of various degrees who all have this basic approach in common:
Understanding of the importance of addressing the infection(s) fully head-on with specific measures;
Knowing that support supplements are important, but NEVER enough alone. And knowing which supplements have direct impact, which are only support and which are both.
You can compare and contrast many approaches.
BASIC HERBAL EDUCATIONAL links . . . . -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Keebler, I really really respect all the work you do for us here on LN. But I have to tell you that despite seeing one of the 'top' LLMD's I haven't at all improved.
My LLMD has made it clear to me that most of his patients see 'results' that follow a certain pattern, etc. And that's true.. most people here on LN have written too that they tried X or Y treatment which really helped them 'turn the corner' or whatever despite numerous bumps in the road. Some of us despite seeing an ILADS physican are stuck in a horrible hole.
My LLMD feels people like myself are in the minority and after visiting his office I can see why. *Most* of his pts get better. A very very few don't.
And many non-ILADS docs who don't treat with 3, 4 or 5 meds also get people better. I've been to both and frankly wonder many times if I'm wasting my time with a 'top gun'.
Posts: 195 | From - | Registered: Sep 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Trubee,
Sounds like a different doctor is a good idea. Still, one who is very "lyme complex" literate but also one who can think beyond that circle.
You also recently posted that your ND is not at all LL. As I recall, you were given a supplement that most LL NDs would have know might "wire" someone with lyme.
All this is so very complex but I hope that won't stop you from finding the LL doctor who has the skill & knowledge to help you get better.
Some of it may be tick-borne issues; some may not.
It just sounds like you need a doctor with a broader scope.
Still, it's true that antibiotics don't work for everyone and are often too harsh for others, despite support methods. But if support methods are not the right ones, that can cause failure, too.
Wonder if you might consider RIFE?
RIFE LINKS are in that ND thread above.
Also, wonder if OTHER things have been considered (i.e. heavy metals, mold, porphyria, Cpn, HHV-6, etc.)
Detail here, especially in TIMACA's link: ----------------------------------------
Diagnosing Lyme Disease (&/or whatever else is going on)
Other tick-borne infections and other chronic stealth infections - as well as certain conditions - that can hold us back are discussed here. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Thanks Keebler, as always, great points you bring up. My foggy brain meant to say that ILADS LLMD's don't always have *all* the answers.. they truly don't.
And I'm not seeing the ND anymore, I found many of the supps a waste of time and $$. I think it's hitting the right infection w/ the right dosages while keeping yourself sane..
Thank you for your thoughts, you are always concerned about everyone here!! Best!
Posts: 195 | From - | Registered: Sep 2011
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quote:Originally posted by Keebler: - Accept as part of lyme? Yes.
Learn to live with it? Not on your life.
-
Thats a really good way to look at it. I think one of the good things about being this sick (the only good thing?? lol) is that you cannot let yourself get complacent. You know that you HAVE to find a way to get better, and you keep pushing towards that goal.
Posts: 169 | From The Poconos | Registered: Jun 2011
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Some of it may be tick-borne issues; some may not.
It just sounds like you need a doctor with a broader scope.
- [/QB]
Another good point. I think so many lyme patients (myself included) get wrapped up in this lyme, lyme, lyme ideology. I've always believed from the moment I got sick that if I (we) are not getting better, there is a reason why. It is now our priority to exhaust any and all options (within reason) to figure out why we are still sick.
Posts: 169 | From The Poconos | Registered: Jun 2011
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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Good points.. The LLMD I was seeing told me to only expect a 40% improvement.. which I would be grateful for that..I got the LLMD from the recommened doctors here.. When you are so sick its is hard to travel far and after about two years I couldn't do it anymore , simply could not afford it.
I am not sure what the doctor I am seeing knows about Lyme he impresses me more than the LLMD I was seeing but we are starting from scratch because he wants all his own test..
I see him the 17th, second visit so we shall see.
Yes, I may have to live with this as I have done all I know to do.. I am 69 yrs old and my funds are small..
After being sick for 11 years and seeing many doctors I did see a ND so many costly supplements no improvement so what else can I do??
I think I have had every test there is .. Now I am tired of doctors, meds not working and going broke in the process..
I will hang in with this doctor and play in by ear, hoping and praying..My last resort.
Posts: 1058 | From VA | Registered: Oct 2010
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posted
We should 'hang out' phyl6648, I've been sick that long too... and 'been there, done that' with oodles of docs. A fresh set of eyes may definitely help.
I wish you all the luck in the world.. as they say, never ever stop looking for answers. Feel better and do post how it goes with your new doc!!
Posts: 195 | From - | Registered: Sep 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Phyl, you say that you are
"not sure what the doctor I am seeing knows about Lyme he impresses me more than the LLMD I was seeing but we are starting from scratch because he wants all his own test.." (end quote)
Well, it all depends on the LABS that do the lyme tests. Not all tests are done correctly.
Even then, it's a clinical diagnosis. The doctor needs to know all about it or he can't properly assess.
You say you are "not sure what" he knows about lyme. It's vital to find out. What he knows - or does not know - will affect the rest of your life. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Thanks Keebler.. How do I find out what the doctor knows other than what he says.. I thougth the LLMD knew but after almost 2 years it was like a hit am miss..
I am tired, out of resoures, I feel stuck and honestly don't know what to do next or how..
When I see him on next week I will ask more questions and maybe he can refer me to someone that will accept ins.. Honestly I have lost all confidence in doctors..
Just don't know what to do next.
Posts: 1058 | From VA | Registered: Oct 2010
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
Phyl,
there are protocals that people are doing on their own such as the Buhner protocal, Cowden protocal, Byron White.
You can email him and he will answer your questions, free.
Some say that you have to get rid of parasites before you can improve.
And, apparently, inflammation is huge in Lyme, and so many diseases, even depression. Finding a way to control the inflammation is one of keys to getting well.
For inflammation, I use Japanese Knotweed, which Buhner recommends, also green tea, and fish oil.
I use Vitamine D3 and Kavinace for mood control. I buy the Kavinace through my LLMD. Not available over the counter. Some people are helped with Lithium Ortate for depression.
These things may help you since you are so down and discouraged, understandably so.
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