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» LymeNet Flash » Questions and Discussion » Medical Questions » Symptoms: Can ANYONE relate??????????!?

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Author Topic: Symptoms: Can ANYONE relate??????????!?
maryland
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Okay, I have chronic Lyme (at least 8 yrs.) and just when I thought I figured out how my body is affected by this disease I find more questions.

Why is it that when I am having a lyme flare I become what feels like deathly ill - the multiple symptoms can last for days, then, without any specific medication or intervention I feel like a million bucks AND feel filled w/ energy??!

How can Lyme (and/or any tbi) cause your legs to just barley walk, and later that same day you feel as though you are ready for a workout at the gym?? Does anyone experience this???????

--------------------
Bullsye rash: 1994, tx w/ ABT,
Symptomatic:1999
Hospitalization: 2004
Equivocol results (specialy lab) resulting in chronic use of ABT, herbs, etc ever since.
Severity of symptoms continue to worsen intermittingly.

Posts: 140 | From maryland | Registered: Oct 2006  |  IP: Logged | Report this post to a Moderator
Keebler
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-
Actually, most EVERYONE who has had lyme a while can probably relate. What you describe is very common with lyme. These links explain more:

========================

http://www.angelfire.com/biz/romarkaraoke/whento.htm

When to Suspect Lyme - by 
John D. Bleiweiss, M.D.

=====================

http://www.canlyme.com/tom.html

The Complexities of Lyme Disease - A Microbiology Tutorial

- by Thomas M. Grier M.Sc.

=======================

www.thehumansideoflyme.net

The Human Side of Lyme

Deliberations of a psychiatrist who evaluates and possibly diagnoses Lyme and other tick-borne diseases of the mind, sharing case histories . . . .
-

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maryland
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Thanks for the links. I just cannot seem to understand still why my body has such drastic changes in severity of symptoms within an just a few short hours. And more importantly, IS THIS A SIGN THAT I AM GETTING WORSE/relapsing???!!

--------------------
Bullsye rash: 1994, tx w/ ABT,
Symptomatic:1999
Hospitalization: 2004
Equivocol results (specialy lab) resulting in chronic use of ABT, herbs, etc ever since.
Severity of symptoms continue to worsen intermittingly.

Posts: 140 | From maryland | Registered: Oct 2006  |  IP: Logged | Report this post to a Moderator
momintexas
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A Lyme friend and myself have had this conversation MANY times. One minute you feel wonderful and then literally in a matter of minutes, everything changes, and usually with no warning.

I don't think it's a sign you are getting worse, I think it's just part of it.

But like Keebler said, I think everyone has felt this as well. Hang in there, you're not alone. [Smile]

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Need Lots of Help
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Actually, I never have days where I feel better. I always feel so tired that I want to cry and I wonder why I keep waking up in the morning. I wish I felt like I could run a marathon!!!
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lyme in Putnam
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I know. It happens alot.

--------------------
He took u to it, He'll you through

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Tincup
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My explanation and theory... after experiencing this for many years... and this is not scientific, just my guess.

I explain it like... "I'll feel bad and sick for XX number of days... and then suddenly, for no known reason, it feels like at 1:43 PM exactly someone flipped a light switch on and all of a sudden I am fine."

My guess ... it is the moment the toxins and die-off have cleared from our system. I can find no other reason for this dramatic instant reaction.

I've also felt this happen when getting IV glutathione after being so so sick.

Hope that helps?

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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TN Kim
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Experience this exact thing all the time. It's very frustrating because I will be complaining and feeling horrible then a few minutes later I

feel, act and seem fine. Sure doesn't help with the "disbelievers" in our lives, huh? [Frown]

--------------------
Bite 4/22/12
abx 5/03/12
neg. Lyme
pos. Cpn 5/17/12

Bite 5/22/10
abx 6/25/10

IgM Igenex Positive & CDC/NYS Positive with 18+ ; 23-25+; 31+; 34+; 41+; 66+; 83-93 (IND)

IgG Igenex Positive; CDC/NYS Negative with 31+; 39 (IND); 41++; 58+

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TN Kim
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Experience this exact thing all the time. It's very frustrating because I will be complaining and feeling horrible then a few minutes later I

feel, act and seem fine. Sure doesn't help with the "disbelievers" in our lives, huh? [Frown]

--------------------
Bite 4/22/12
abx 5/03/12
neg. Lyme
pos. Cpn 5/17/12

Bite 5/22/10
abx 6/25/10

IgM Igenex Positive & CDC/NYS Positive with 18+ ; 23-25+; 31+; 34+; 41+; 66+; 83-93 (IND)

IgG Igenex Positive; CDC/NYS Negative with 31+; 39 (IND); 41++; 58+

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Lymetoo
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maryland....I would say it's a sign you are GETTING BETTER!! Some patients NEVER have any good days full of energy!!

[Cool]

--------------------
--Lymetutu--
Opinions, not medical advice!

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Keebler
Honored Contributor (25K+ posts)
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-
The liver does have a huge amount to do with it. When it can work a bit better, so do we. Same with adrenals, heart, and on and on.

One other factor many: vestibular involvement.

For anyone with any degree of inner ear disorder (whether from lyme or for other reasons), a shift in the wind, in barometric pressure can make a world of difference, in any direction.

Also, whatever is in our sensory pathway for ears or eyes matters greatly when the ears are affected. If someone come around me who is wearing a striped shirt, it literally tosses me off the track the whole rest of the day.

Same with fluorescent lights. If someone who is visiting me happens to turn on the overhead kitchen light (which I never do), I'm down for the whole day, spinning.

This explains why:
--------------------

http://www.vestibular.org/vestibular-disorders/symptoms.php

VESTIBULAR SYMPTOMS

============================

What helps the ears & the liver:
--------------------

LIVER SUPPORT is also vital for the ears. 3/4 of the way down page one in the thread below, you will see that.

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=065801

Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS

=============================

A more specific toxic liver issue, this can also explain a lot:

http://www.cpnhelp.org/secondaryporphyria

SECONDARY PORPHYRIA: what you should know before starting a CAP (combined antibiotic protocol)

More detail and things that help:
-------------------------------

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/91842?

PORPHYRIA Thread - along with details about KPU/HPU (Mauve factor)
-

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Keebler
Honored Contributor (25K+ posts)
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-
The entire endocrine system is often all over the place with lyme.

Adrenals can push when they are under stress. But these false signals can leave us in the ditch later when we've spent that false energy. For ways to smooth that out:

ENDODRINE LINKS:
-----------------

This book is specific to lyme and other chronic stealth infections. The author discusses the endocrine connection and effects of STRESS on a person with such infections. You can read customer reviews and look inside the book at this link to its page at Amazon.

http://tinyurl.com/6xse7l

The Potbelly Syndrome: How Common Germs Cause Obesity, Diabetes, And Heart Disease (Paperback) - 2005

by Russell Farris and Per Marin, MD, PhD

==================

Remember that lyme really messes up the HPA axis (Hypothalamus/pituitary/adrenal network). The pituitary has much to do with weight/growth. Mess up any part of the endocrine system and other parts suffer, too.

http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

See page 4 where Dr. Burrascano describes a bit about the considerations of the dysfunction with the HYPOTHALAMIC-PITUITARY AXIS

===============================

Many good basic articles about Adrenal Dysfunction:

http://www.vrp.com/ArticlesSearch.aspx?k=Adrenal_Dysfunction

=========================

Cordyceps is recommend here:

This is included in Burrascano's Guidelines, but you may want to be able to refer to it separately, too:

http://www.lymepa.org/Nutritional_Supplements.pdf

Nutritional Supplements in Disseminated Lyme Disease

J.J. Burrascano, Jr., MD (2008)

========================

Great information about treatments options and support measures, including those to help adrenal/endocrine function:

http://tinyurl.com/6lq3pb (through Amazon)

THE LYME DISEASE SOLUTION (2008)

- by KSn, MD

You can read more about it here and see customer reviews.

Web site: www.lymedoctor.com

=========================

http://webhome.idirect.com/~wolfnowl/thyroid7.htm

Get To Know Your Endocrine System -by Lauri M. Aesoph, N.D.

Excerpt:

(section on) Adrenal Glands

. . . Your body reacts to these hormones with a "flight or fight" response: pounding heart, dilated pupils and high blood pressure. . . .

=========================

http://www.prohealth.com/ME-CFS/library/showArticle.cfm?libid=14383&B1=EM031109C

http://tinyurl.com/detwtt

Underactive Adrenal Gland - Stresses and Problems with the Body's 'Gear Box' - by Dr. Sarah Myhill, MD

=======================

Many libraries carry this book and you can read 95 customer reviews here (average 4.5 star out of 5) AND see inside the book:

www.amazon.com/Adrenal-Fatigue-Century-Stress-Syndrome/dp/1890572152/ref=sr_1_1?ie=UTF8&s=books&qid=1263516913&sr=8-1

Adrenal Fatigue: The 21st Century Stress Syndrome

~ James L. Wilson, ND, DC, PhD, Johnathan V. Wright, MD

About $10. And qualifies for free shipping with a total $25. Purchase at Amazon

======================

http://tinyurl.com/y8bd9k2

Curcumin Prevents Some Stress-Related Changes (By CP Staff)

Excerpts:

A recently published study investigated the effects of curcumin, a constituent of the botanical turmeric, on changes in cognition and memory caused by stress. . . .

. . . In this new study, researchers investigated the effect of curcumin supplementation on stress-induced learning defects in mice. . . .

. . . In addition, curcumin reversed the stress-induced increase in the levels of serum corticosterone, the primary hormone secreted during the stress response. . . .

. . . The researchers concluded, ``Thus, curcumin may be an effective therapeutic for learning and memory disturbances as was seen within these stress models, and

its neuroprotective effect was mediated in part by normalizing the corticosterone response, resulting in down-regulating of the phosphorylated calcium/calmodulin kinase II and glutamate receptor levels.''

===================

http://tinyurl.com/6xse7l - through Amazon:

The Potbelly Syndrome: How Common Germs Cause Obesity, Diabetes, And Heart Disease (Paperback) - 2005

by Russell Farris (Author), Per Marin (Author)

Much about stress reactions here. - you can read customer reviews at the link. Attention is given to lyme and other chronic stealth infections however, it does not go into details about solutions.

===========================

This is not a lyme book.

This book has only one reference to lyme (in the historical use of sarsarparilla for another spirochetal infection). However, it is a vital first book to read - or a reference - for anyone interested in understanding nutritional methods.

Search for Ashwagandha; Cordyceps; Siberian Ginseng in this book:

http://oneearthherbs.squarespace.com

The One Earth Herbal Sourcebook (Tillotson)

Graciously, much of this book is on line. It can also be purchased from this site or through Amazon where you can look inside the book and see many customer reviews.

Amazon link to this book: http://tinyurl.com/6zapeh

=====================

The Rhodiola Revolution byt Richard P. Brown, MD and Patricia L. Gerbarg, MD, et.al.

See this at Amazon.

======================

If help beyond supplements is needed, sometimes LLMDs will prescribe LOW DOSE CORTEF (Hydrocortisone).

While steroids are dangerous with lyme, the low-dose Cortef is more like the body should be producing, but can't and lyme patients who need it generally do very well with it. A few may not be able to handle it.

Usually, the adrenal supplements are employed first.

For many good past LymeNet Threads, you can search here:
-------------------------------

http://flash.lymenet.org/scripts/ultimatebb.cgi/ubb/search/search_forum/1

Search both terms, "Hydrocortisone" & and also "Cortef"
-

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Keebler
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-
Although what you describe is very common with lyme and just part of the deal, of the many things to consider: nutrition.

If endurance comes and goes, look at your food choices and schedule. You may not be getting required nutrients in the best ways. The timing of food may need to be adjusted. Just one part of that:
------------

http://icmr.nic.in/ijmr/2006/august/0804.pdf - 20 pages


THE REQUIREMENTS OF PROTEIN & AMINO ACID DURING ACUTE & CHRONIC INFECTION . . .

Anura V. Kurpad - Institute of Population Health & Clinical Research, Bangalore, India 129. Indian J Med Res 124, August 2006, pp 129-148.

Excerpt:

" . . . In general, the amount of EXTRA protein that would appear to be needed is of the order of 20-25 per cent of the recommended intake, for most infections. . . ."

- Full article at link (or google the title if it does not go through).
-

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Keebler
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-
http://www.acupuncture-services.com/basic-theory/chinese-medicine-diagnosis/chinese-medicine-body-clock.php

CHINESE MEDICINE BODY CLOCK: Acupuncture and Chinese Medicine

There are twelve energy pathways, or meridians, in the human body that connect to specific organs in the body. Chinese medicine believes that each organ has a two hour time period when the Qi is at its peak in that meridian.

The Qi flows cyclically in a clockwise rotation like a wave through the meridians.

We always pay attention to symptoms that occur repeatedly at specific times because this may be an indication of the organ that is out of balance. For example, waking every night between 1 and 3 a.m. almost always is indicative of a Liver imbalance.

This chart shows the order of the flow. . . . (cont'd at site)

==========================

http://deepesthealth.com/2007/chinese-medical-symbolism-the-organ-clock/

Chinese medical symbolism: THE ORGAN CLOCK

==============================

http://opinionator.blogs.nytimes.com/2009/12/22/enter-the-chronotherapists

ENTER THE CHRONOTHERAPISTS - by Olivia Judson

NYT Blog - December 22, 2009

Olivia Judson on the influence of science and biology on modern life.

===========================

http://www.wellnesscenter.net/products/saliva-test/nufem_saliva_lit.htm

Menopause, Hormone and Lifestyle Monitor -- EndoPure Homeopathic Hormone Rejuvenation System

- Theresa Dale, Ph.D., C.C.N., N.D., N.P., April 2000-February 2007

Excerpt:

. . . The following 11 saliva tests are performed in this Comprehensive 24 hour Circadian Endocrine Profile. . . .

. . . For the first time in history, this innovative saliva test employs cutting edge twenty-first century technology with the ancient wisdom of Chinese Medicine. . . .

============================

www.shareguide.com/hormonereplacement.html

Hormone Replacement Therapy

An advanced saliva test, based on the Traditional Chinese Medicine "body clock," should be performed on every person before they consider hormone . . .
-

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jwall
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I have the same thing which is why some days I question whether I'm dealing with lyme at all. I don't have a single day w/o symptoms, but I have days when I get a lot done (clean thehouse, take kids to school, play with them outside, help with homework, make dinner, and go to the gym...) and then the following day, I can barely walk or think clearly. I have to say though, I pretty much always feel sick to a varying degree.

it is all w/o warning. Sometimes I'm out and about and feeling decent...and then all of a sudden, that horrible body/muscle/joint pain starts creeping back in and all I can think about is getting back to the safety of my house and away from people.

My LLMD says that the waxing and waning of symptoms and the variation in intensity is very common with lyme. It makes it hard to make any plans at all!

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lymeladyinNY
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It is because of the waxing and waning of symptoms that doctors/family/friends are skeptical of Lyme victims.

Yesterday I felt like death and had to rest in bed most of the day. Then, I took a 20 minute nap and voila! - I felt so much better I got up and went out to a bonfire until 9 pm.

An acquaintance at the bonfire said, "Wow! You look so much better than last year! You must be all better now!"

What can you say? You could say, "Oh, thank you!" but I chose to tell her something more truthful. I said, "At least I don't need my wheelchair as often, but last night I felt like my brains were boiled cabbage and I needed narcotics to get through it."

She looked horrified. But I don't want anyone to think I'm "all better" when in reality the only time you see me out and about is during the "waning" moments of the illness.

Like jwall, I'm never symptom-free, but my symptoms do ease up enough to give me some semblance of a life. It is one of the cruelties of the illness, because it can give you false hope, and like jwall said, how can you make plans when you never know what will happen in public?

I had to leave the bonfire when it felt like my burning headache was returning. I didn't want my legs to give out and have a screaming convulsion in a cow pasture in front of a big crowd of people. So my husband and I hurried out of there before that could happen.

It's not a fun way to live.

- Lymelady

--------------------
I want to be free

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maryland
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YES! That is exactly what I am talking about!!!! Of course for me the symptoms include headaches, extreme dizziness/ vertigo, nausea (sometimes vomiting)- all in addition to migrating joint pain and fatigue.

And OMG, it is impossible making plans!!!

But I wonder if the flux in symptoms is from straight Lyme or co-infections??

--------------------
Bullsye rash: 1994, tx w/ ABT,
Symptomatic:1999
Hospitalization: 2004
Equivocol results (specialy lab) resulting in chronic use of ABT, herbs, etc ever since.
Severity of symptoms continue to worsen intermittingly.

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jwall
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Yep, the horrible dizziness and severe headaches I have too. but, it seems like that horrific body pain just throws me over the edge. Sometimes, when the dizziness hits, it just feels like I cannot hold my head up on my neck...it wants to fall over. It usually is accompanied with ataxia and a persistent feeling that I am being pushed to the left when walking. This was a pretty persistent symptom for a long, long time, but seems to be improving finally. When this happens, I am just beyond miserable. I also get different types of headaches - "burning" brain, throbbing migraine, squeezing base of skull, head being squeezed/pressure. So these all change for me on a daily basis too...come and go. Very strange!!! I hate it - I cannot make any plans at all. Very sad.

I did not ask my LLMD about if it is all lyme causing it. I'm sure it is a cruel combination of all the infections.

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springshowers
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When I was sick I was either sick or much sicker and never felt better..

As I got better I felt sick or somewhat better..

As I got even better.. I noticed now that when a day does not feel good it is starting to be related to what I eat.

I am looking into this more even though I already have done food allergy testing and elimination procedures and retesting..

I think I have to go with Zero amounts and not reintroduce foods.

I am amazed how bad I can feel when I eat something I am allergic too or have an intollerance too.

Try to eliminate gluten Dairy and all processsed and white foods for a couple weeks and see if you stabalize.

Just a a test and to rule it out. Sounds trivial but food can be very strong and powerful and I think Lyme has damaged our systems..forward or can.

As I felt better I got more lax on my diet and I am noticing how big of an issue it is and I am not going to msss up anymore.

Give it a try.. Its worth it

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