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» LymeNet Flash » Questions and Discussion » Medical Questions » Feeling lousy, need help, please read...

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Author Topic: Feeling lousy, need help, please read...
KiwiPi
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Hi everybody...I hope it's OK to post about this, here; if not, I won't go further with it.

I don't have Lyme disease, but I was just diagnosed with anaplasmosis four days ago. There doesn't seem to be any support groups out there for it, so I thought I'd try my luck here. The symptoms seem pretty similar. I've been sick for a few months without knowing what's going on. Now that I know, I feel like I haven't really been told the extent to which this could be affecting me. I'm so tired all the time, and foggy, and sick to my stomach..and that's the tip of the iceberg. I've been told to just take my doxycycline and check back w/my doc in a few weeks, but I get the feeling that it might not be that simple to beat this thing.

I know it isn't Lyme disease, but it's similar, and I'm hoping somebody here might be able to give me some idea of what I can expect in the future--long and short term.

Kiwi [Frown]

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Keebler
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Welcome - but so very sorry for the reason that brings you here. You are correct, no tick-borne infection is a walk in the park.

How do you know you don't have lyme? There is no test that can prove you don't have it. Most tests are not done correctly or by labs that are very good at what they do.

What testing did you have?

Doxy does cover lyme and you may be having a herxheimer reaction so I'm a bit miffed that your doctor apparently did not give you support suggestions.

Still, Anaplasmosis is a tick-borne disease, so a Lyme Literate MD and the local lyme support groups are best to contact.

And, yes, of course, you are welcome to post here - this site is to help anyone manage ANY tick borne disease. But, it's just that if you have one tick-borne infection, chances are good that lyme is in that mix. Since there is no way to prove it is not, it's good to cover all the bases.

Still, even if you just focus on anaplasmosis, you need an ILADS-educated LLMD to work with you on this. LLMDs know about ALL tick-borne infections, and many also are expert at other chronic stealth infections.

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

http://www.cdc.gov/ticks/diseases/anaplasmosis/

Anaplasmosis is a tick-borne disease caused by a species of bacteria called Anaplasma phagocytophilum. It was previously known as human granulocytic ehrlichiosis (HGE) and later as human granulocytic anaplasmosis (HGA). Both of these names refer to the same disease now known as human anaplasmosis.

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

www.ilads.org

ILADS - INTERNATIONAL LYME & ASSOCIATED DISEASES SOCIETY

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

http://www.lymenet.org/SupportGroups/

Find your area lyme support groups
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Keebler
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http://www.lymepa.org/html/dr__j__burrascano_september_20_0.html

Burrascano's Powerpoint SLIDE presentation 9-20-08 (38 slides)

------------

The search feature is at the top of this document. Search: anaplasmosis & ehrlichia - & ehrlichoisis.

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

Advanced Topics in Lyme Disease (Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses

Dr. Burrascano's Treatment Guidelines (2008) - 37 pages

------------
As important as any supplements, sections regarding self-care:

Go to page 27 for SUPPORTIVE THERAPY & the CERTAIN ABSOLUTE RULES

and also pages 31-32 for advice on a safe, non-aerobic exercise plan and physical rehabilitation.

----------------------
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) - Four pages

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

Sample chapter from the book "Insights Into Lyme Disease Treatment" - anaplasmosis /ehrlichia is just briefly discussed here but the support methods are all about the same as with lyme.

http://www.lymebook.com/steven-harris

Chapter One

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

This includes other tick-borne infections besides lyme, too. Six pages about anaplasmosis.

It's very important to have this book as a reference tool for self-care and support measures. It answers so many questions in detail that is impossible here on the forum.

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

THE LYME DISEASE SOLUTION (2008)- by KS, MD

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

Web site: www.lymedoctor.com

------------
http://www.lymebook.com/antibiotic-treatment-for-babesia-bartonella-ehrlichia-co-infections

Scroll of the way down for section: Ehrlichia/Anaplasma - then check out the menu bar on the left side.
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[ 11-27-2010, 03:55 PM: Message edited by: Keebler ]

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Keebler
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Today, be sure to get some PROBIOTICS and take at times opposite the doxycycline.

Milk Thistle should also help you feel a bit better. It helps to nourish the liver so that the liver can work better for you.

Magnesium Glycinate, too. That helps relive pain and irritation.

Turmeric is good to lessen inflammation and pain.

Do not lie down for an hour after taking doxy.

Others will be along with suggestions. I think you need much more comprehensive treatment. To find a Lyme Literate MD (LLMD), you can post over in this forum:

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=forum&f=2&submit=Go

Seeking a LLMD

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

Separate by a few hours in both directions:

Antibiotics

Probiotics

Supplements

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

Magnesium is of vital importance. Not so much about TBD (tick-borne disease) but this explains a lot:

http://www.mbschachter.com/importance_of_magnesium_to_human.htm

The Importance of Magnesium to Human Nutrition

(thanks to Carol in PA for this link)
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Keebler
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You asked: "what I can expect in the future--long and short term?"

Well, anaplasmosis can be a very rough ride and treatment likely needs to be longer than most regular doctors might do - and it should be multi-faceted and it's not as easy as most regular doctors think. Only recently, has there been detail that anaplasmosis / ehrlichia can become chronic so you want the best of care to avoid that, if at all possible.

And, as with lyme, most regular doctors will are not educated regarding the complexities.

Google: "chronic anaplasmosis" - and also: "chronic ehrlichiosis"

With good self-care, support methods and the right doctor, you have a good chance of getting better. I hope you can find an expert to guide you. Good luck.
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KiwiPi
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In regards to my tests...unfortunately, I don't have the hard copy of my results yet (they're out in the mail somewhere) but they said they tested for Lyme, which was apparently negative, and that the anaplasma titer was positive. If I'm understanding it properly, don't the respective bacteria for erlichia and anaplasmosis both give a positive anaplasma titer? They're not the same thing, are they? I'm still in the confused stage. But, thanks to everybody for the advice so far. I'm going to be checking out those links shortly.
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Keebler
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Ehrlichia (if HGE) is the same as anaplasmosis. I suggest searching both terms as anaplasmosis is a recent change and some good research might only be found under the old term.

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

Did you have both IgG and IgM Western Blots for Lyme. My guess is not. ELISA is usually done and that is a terrible test.

Also, the CDC criteria for a positive lyme test is ridiculous. Many very ill patients with lyme don't meet the CDC criteria.

Lyme is SUPPOSED to be diagnosed by symptoms. Tests are not that accurate but it's a very hot political mess with patients loosing out unless they get to a real LLMD who is ILADS-educated.

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

www.canlyme.com/seronegreasons.html

(27) REASONS WHY A SERONEGATIVE TEST RESULT MIGHT OCCUR

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

One of the best labs for TBD:

www.igenex.com

IGENEX

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

Dr Cs Western Blot explanation is discussed here:

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=042077#000000

and

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=042077

"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.

Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.

But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.

Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.

Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.

Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.

But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM."

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

http://cassia.org/checklist.htm

Symptom checklist for lyme.

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

http://cassia.org/essay.htm

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

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

Discussion thread:

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/100767

Topic: How many are treating with a Negative Lyme Test?
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[ 11-27-2010, 04:09 PM: Message edited by: Keebler ]

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Keebler
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AVOID STEROIDS, even avoid steroid creams. Steroids can make infections works.

LUMBAR PUNCTURE (Spinal Tap) is NOT a good test for lyme. Any doctor who suggests this to diagnose lyme is not a lyme literate MD (LLMD).

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

http://www.ilads.org/lyme_research/lyme_articles4.html

Lyme Disease: Two Standards of Care

by Lorraine Johnson, JD (revised 2005)

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

http://www.clinicaladvisor.com/controversy-continues-to-fuel-the-lyme-war/article/117160/

CONTROVERSY CONTINUES TO FUEL THE "LYME WAR"

Discusses differences in the methods of the IDSA from those of ILADS

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

http://www.lymedisease.org/news/lyme_disease_views/592.html

THE HUMAN FACE OF TICK-BORNE DISEASE - by Pamela Weintraub

October 11, 2010 at the Institute of Medicine (IOM) Talk on state-of-the-science Lyme workshop. She is author of CURE UNKNOWN

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

http://tinyurl.com/5crsjv

CURE UNKNOWN: Inside the Lyme Epidemic (2008) - by Pamela Weintraub

This details what an entire family went through. Having this knowledge of their journey will help others to get better, faster treatment.

http://www.cureunknown.com

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

http://www.underourskin.com

Documentary: UNDER OUR SKIN

(you can purchase for $35 at the site or see if you local lyme support group has a copy to lend.)
-

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Keebler
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What dose and for how long will your doctor treat you? How long is your current prescription for doxycycline? Is he planning on changing anything the next time?

Be sure to avoid consuming dairy products along with doxy (keep separated by few hours) as calcium can impair its ineffectiveness. Magnesium, too.

Take with some food and sit up for at least one hour. That might help your stomach. Ginger capsules might also help your stomach if it is a nausea thing going on - just take at a different time.

About being tired, well, that just goes with all this, sorry to say. And it's not likely going to get much better until the infection(s) are adequately treated for long enough. Rest as productively as you can and do gentle exercises a bit at a time when you can.

Excellent nutrition is essential. I hope you have some friends and family who can help you out with chores, errands and healthful food prep. Take care.
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Keebler
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http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/101262

What is a herxheimer reaction and what helps?
-

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Lymetoo
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Definitely get tested again through Igenex lab for Lyme. You could also have other coinfections.

But first... Obtain a copy of your other lyme test and see if any "bands" showed up on it.

If so, let us know which ones were positive. The ordinary labs do NOT do a good job of testing for Lyme...trust me.

www.igenex.com

You need test #188 and 189.

 -

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

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KiwiPi
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Wow! This is a great amount of information. A lot to take in, but I'd rather have a lot than not enough.

My husband checked the mail this afternoon and I did get the letter w/my test results. Naturally, it just said 'negative' Lyme titer, so I'm assuming, as some of you here have said, that it was nothing more than a run-of-the-mill test.

My doxy dosage is 100 mg twice daily. Is that pretty standard? (If there is a standard?) I'll be taking it for two weeks, then I'm supposed to wait a week and call my doctor to let him know how I'm feeling. I thought that this sounded a little strange, as if they're not giving this problem the appropriate amount of attention. But that's just a gut feeling.

Problem is, there is a complication. The anaplasma titer was only done because my GP was looking for a cause of the severe muscle pain I've been having for a few months, mainly in my right shoulder and neck, but in some other places as well. I had an MRI on Monday and got the results of that at the same time I got the news about my titer. I have a herniated C4-C5 disc, and I was told that he's not sure whether/how much anaplasmosis might be worsening the inflammation of that disc. I can see this becoming a problem. I'm happy two have answers to what's been going on with me, but I wish, as anyone would, that it could've been simpler.

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Keebler
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Lyme titer - the term, titer, indicates the very poor ELISA test. Yes, run of the mill and most are negative since it's such a bad test.

Lyme can cause infection in the neck (and the whole spine and the brain), so it's important to know that. Be VERY gentle not to irritate it but you also have to work out the body kinks, to put less pressure on the neck. Lyme can cause nearly rock-solid shoulder muscles.

The other TBD (tick-borne diseases) can do that, too. I do know that all the other TBD can cause both meningitis and encephalitis.

For now, 100 mg 2 x day is typical and it's not bad to ease into this but is not really adequate. When I was first treated for a different form of ehrlichia (I had HME, you have HGE) I had to take a total of 600 mg of doxy a day for 2 solid months.

Sorry to hear of the herniated C4-C5 disc. Lyme and other TBD can cause damage - or it could be unrelated. Still, the presence of infection can make any injury more painful and more complicated to treat. Some typical treatments can make lyme worse.

And, yes, if the anaplasmosis is adequately treated (and any other infections), this could get better but it may take a while.

Are you on strict "neck" rest?

Be sure to avoid steroids. It's best to see a LLMD before going on with any other treatments to be sure they are not contraindicated.

If surgery might be required, they often give steroids. You would need to know exactly how to counteract that with specific antibiotics. Doxy may not be enough.

But, often surgery is not needed. Good antioxidants that are also anti-inflammatory are listed in the Pain thread above. Magnesium and Curcumin are the top choices.

Do take care and know that this can get better.

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

As many sleep and pain meds are toxic and hard on the liver and kidneys, here are some suggestions for sleep support that can safely nourish & calm the body:
---------------

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/89790

Topic: NATURAL SLEEP - Links to articles & supplements

----------------

http://flash.lymenet.org/ubb/ultimatebb.php/topic/3/24039

Topic: Looking for long term pain management
-

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Misfit
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I know absolutely diddly squat about anaplasmosis...I'll have to do some reading. I do want to welcome you to the boards, though!

Your doxy dosage is pretty standard. Now..whether it's enough for your TBD (tick borne disease), I don't know. For Lyme, it's not. Standard for Lyme is 200mg twice daily, at least.

For me personally, with Lyme...the inflammation has exascerbated my back problems. And I'm not learned enough to comment on which or how coinfections affect the muscles. No doubt they do.

There's so much to learn with TBDs. So much. But welcome, and I hope you enjoy being here! Don't be discouraged..there are a ton of people here that are smarter than I am! [Smile]

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Keebler
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If you can't find an ILADS-educated LLMD right way, you might see if you can find a LL ND in your area - some LLMDs and LL NDs work together, too.

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/2/13964?

Topic: How to find an ILADS-educated LL ND (naturopathic doctor), L.Ac. (acupuncturist), etc.

BODY WORK links are also included. You might find some safe gentle techniques to compensate for the neck right now and keep the rest of your body aligned.

If you can get massage, not on your neck, of course, but on all the things that pull on the neck, that can be excellent. Myofascial therapy comes to mind, with UPLEDGER links at the link above.
-

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KiwiPi
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Thank you for welcoming me! I was a bit nervous about posting here because I don't--as far as I know--have Lyme, but it seems like all these TBDs have a lot in common anyway.

About the steroid issue...it's interesting that it can make these infections worse, because I had five cortisone injections in my shoulder in mid-October, as well as a lumbar epidural steroid injection a month ago, and things seem to go downhill after that. Makes a person wonder...

Why is it important to not lie down after taking doxy? I always have the urge to lie down because it makes my stomach hurt.

I am also curious about the Herxheimer reaction. I did a little bit of reading about it. Is there a way of telling if a person is going through this? Could it be the reason I've been feeling so much worse the last few days?

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Keebler
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Q: Why is it important to not lie down after taking doxy?

Doxy can irritate the esophagus. If you need to rest your neck, sit up at a angle but fully supported. DGL may help your stomach. I'm running out of steam but just google that term, it's a certain kind of licorice that comes in a chewable wafer.

Q: Is there a way of telling if a person is going through [a herx]?

Assume that you are. Employ support methods.

You said: "had five cortisone injections in my shoulder in mid-October, as well as a lumbar epidural steroid injection a month ago, and things seem to go downhill after that. " (end quote)

That recent steroid use can alter test results and it means you need specialized treatment.

I am so sorry. For that reason, you REALLY Need to see a LLMD and be sure s/he is informed regarding your steroid treatments. That may change the course of your treatments.
-

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Keebler
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-
HOLD THE STEROIDS
-----------------------

Basic. Not about lyme.

http://well.blogs.nytimes.com/2010/10/27/do-cortisone-shots-actually-make-things-worse/

Do Cortisone Shots Actually Make Things Worse?

- by Gretchen Reynolds (The New York Times)

October 27, 2010

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

SAVE TO YOUR FILE:

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

Advanced Topics in Lyme Disease

Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses

16th edition, Copyright October, 2008

Joseph J. Burrascano

Excerpts:

P. 4:

. . . More severe illness also results from other causes of weakened defenses, such as from severe stress, immunosuppressant medications, and severe intercurrent illnesses.

This is why steroids and other immunosuppressive medications are absolutely contraindicated in Lyme. This also includes intraarticular steroids. . . .

From page 12:

. . . More evidence has accumulated indicating the severe detrimental effects of the concurrent use of immunosuppressants including steroids in the patient with active B. burgdorferi infection.

Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course.

If immunosuppressive therapy is absolutely necessary, then potent antibiotic treatment should begin at least 48 hours prior to the immunosuppressants. . . .

Page 20:

. . . and absolutely no immunosuppressants, even local doses of steroids (intra-articular injections, for example). . . .

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

http://www.lymenet.de/literatur/steroids.htm

Antibiotics and Steroids - by John Drulle, M.D.

Excerpt:

. . . "Steroid Disaster" is a term coined by the pioneer of Lyme Treatment . . .

Corticosteroids are immune suppressants, the last thing a Lyme patient needs is to lower immunity.


Can you imagine, your body trying hard to fight off the spirochete bacteria and suddenly and immunosuppressants is introduced, "freezing" your immune system, rendering it unable to battle, giving great advantage now to the Lyme bacteria to spread and go wherever it wants .

Corticosteroids can last in the body for months, usually around 6 months. In many bacterial infections such as LD, damage can be done.

Many Lyme patients (such as myself) triggered LD with cortisone shots, pills, inhalers, etc. I can tell you, it is a nightmare I wouldn't wish on my worst enemy.

It is imperative to NEVER take corticosteroid for pain if you know you have a bacterial infection.

Some bacterial infections are so severe that a shot of cortisone could kill you, although that would be unlikely with Lyme, but rule of thumb, bacterial infections and immunosuppressants do not mix! . . .

. . . Dr. Burrascano makes it clear in his treatment guidelines that steroid treatment is detrimental, these are excerpts from his guidelines:

"More evidence has accumulated indicating the severe detrimental effects of the concurrent use of immunosuppressants including steroids in the patient with active B. burgdorferi infection.

Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course.

If immunosuppressive therapy is absolutely necessary, then potent antibiotic treatment should begin at least 48 hours prior to the immunosuppressants.

The severity of the clinical illness is directly proportional to the spirochete load, the duration of infection, and the presence of co-infections. These factors also are proportional to the intensity and duration of treatment needed for recovery.

More severe illness also results from other causes of weakened defenses, such as from severe stress, immunosuppressants medications, and severe intercurrent illnesses.

This is why steroids and other immunosuppressants medications are absolutely contraindicated in Lyme. This also includes intra-articular steroids."

An easy explanation. Your immune system are the "soldiers" of your body constantly standing by to attack any foreign invader.

When an immunosuppressant is used, it is like killing off or knocking out most of your "soldiers", now your body is open to all foreign invasion and while your immune system is knocked out, those invaders can go anywhere, your heart, liver, brain - everywhere.

- full article at link above.

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

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

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

Excerpts:

. . . I routinely advise my patients with LD to abstain from cigarettes, alcohol and steroids because therapeutic inadequacy or an avoidably prolonged convalescence is frequent (Dattwyler, RJ, Lancet 1:687, 1987 - on steroid use).

Patients have described clinical deterioration when steroids were used fortuitously or intentionally when hypoadrenalism was absent.

Another hazard attending palliative steroid use is that some symptoms will be concealed, rendering the clinical picture less interpretable. In a private communication, a physician related that one of his LD patients succumbed to fatal cardiomyopathy after receiving steroids. . . .

. . . Cardiac complications arise in 8-12% of LD cases. . . .

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

[poster's note below - just off the top of my head]

Low Dose Cortef to help adrenal repair:

However, temporary use of very LOW (sub-clinical) dose hydrocortisone (Cortef) has been used as the last resort for lyme patients close to adrenal failure.

The adrenals (and the entire endocrine system) really takes a hit with lyme. Adrenal failure can become fatal so, if nothing else is working, Cortef can be a life-saver - or prevent a patient from reaching a critical stage.

Under the care of a LLMD, this can give the adrenals enough of a rest in order to start healing. However, usually adrenal support measures known as adaptogens are first tried. For most, adaptogen support is enough (along with good self-care).

Those include Eleutherococcus senticosus, Ashwagandha, Cordyceps or Rhodiola (starting slowing with a low dose as that can be too stimulating for some patients -- and too much stimulation is damaging to adrenals).
-

[ 11-27-2010, 07:27 PM: Message edited by: Keebler ]

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Keebler
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Now, partly from the musical backgound of a soulful fiddle with a beautiful rendition of "Boots of Spanish Leather" by Martin Simpson, I'm sort of brought to tears by the reality of your situation.

I wonder how you must be feeling right now. I can toss out matter of fact stuff to consider, steps to take - but you might be feeling a bit more than crispy around the edges right now.

Breathe, nurture, nourish, and then, tomorrow, you can call your local lyme support groups and see who you can find to guide you from here. Knowledge is power but remember that you will also need to put power to aggressive rest. Appreciation of the arts helps me through that. Take care.
-

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KiwiPi
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Good God. Those two words have been running through my mind over and over as I've read these last several posts.

I don't know why I didn't see the connection between steroids and the worsening of bacterial infections before...it makes simple sense, really. I think I will be taking a rain check on any near-future appointments at my pain clinic.
They've got me scheduled for another injection next week; I'd like to think that, once they heard the results of my lab work, they would have put a stop to the corticosteroids.

This is starting to wear on me, definitely. I'm really glad I found this group. The people around me, sadly, just don't seem to get it. My husband is insinuating that I'm being an alarmist. Doesn't seem to believe that I feel as crappy as I do, or that I could have felt this way for a few months. I try to keep my chin up, but it seems that doing that sometimes just makes people not believe me when I tell them how I feel.

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momlyme
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If you have an appt. at a pain clinic, could you get narcotics instead of the steroid injections? If your pain is anything like my son's you are going to need them. Being in this amount of pain is too much to handle without help.

After a week on prednisone, my son could barely walk and was much, much worse... even when we thought getting worse than "feel like I have been hit by a tractor trailor" was simply not possible.

He could no longer climb stairs, fell out of chairs from violent spasms, and his head felt like it was splitting in two.

Then, we found a lyme literate doctor(LLMD)!

Most doctors are treating based on the fiction they learned in medical schools. Lyme doesn't cause pain... easily cured in 14-21 days... lyme does not cause stomach problems... blah, blah, blah. All of it is garbage and hurtful to people who want to get well!

If you haven't already, find a LLMD in the "Seeking a Doctor" section of this forum. Use your state in the subject line.

I am sorry this happened to you too. Unfortunately, it's all too common. Glad you found the forum! It has been a god send for my son and I.

And regarding the reaction from your hubby. You have to educate him. My hubby watched the movie "Under Our Skin" and now he gets it.

The trouble with TBD (most have more than 1) -- people are suffering terribly -- but they look normal! There are moments when I forget how sick my son is because he doesn't look sick!

I remember when an ID doctor told my son his pain was all in his head because "Lyme doesn't cause pain" She suggested he get counseling.

When we left, my son looked at me and said, "Mom, do you think I'm crazy?" It's cruel for these supposed "infectious disease specialists" to NOT HELP people who are infected with TBD!

--------------------
May health be with you!

Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began.

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KiwiPi
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Thanks for the kind note, Heather. It really helps to hear from people who know TBDs.

Fortunately for me, I have a GP who is very sensitive to my pain issues and has had me on narcotic pain meds for a while. He started me on OxyContin last week, and in spite of the yucky side effects, it's been a Godsend for my shoulder.

After reading all these posts, it has become very apparent to me that it's vital to have a Lyme literate doc. I didn't even know there was such a thing until today. I think it's appalling that if you're found to have a TBD, they just throw you some antibiotics and tell you to check back in a few weeks, without sitting you down and talking with you about the disease or addressing your questions or fears. I found out about my diagnosis from a nurse, over the phone, who was very nonchalant about it all. Meanwhile, it's making my life a living hell.

I'm sorry to learn of your son's trials with Lyme. Nobody should have to go through one of these diseases, let alone a child. I'm happy, though, to know that you were able to find a doc who could help. I hope I am able to do the same.

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momlyme
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Don't hope, ask! [Wink]

I found that LLMD through this forum. You are in the right place!

--------------------
May health be with you!

Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began.

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kidsgotlyme
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Welcome Kiwi!!

You are in the right place. I know this is probably overwhelming. I know it was for me.

My husband did not understand AT ALL at first about my daughter's diagnosis. He thought I was a little off my rocker.

I bought a copy of "Under Our Skin" and it really opened his eyes to the truth of tick-borne illnesses.

Getting him on board is a BIG first step.

--------------------
symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections.

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KiwiPi
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I'm still learning about the Herxheimer reaction, but, seeing as I'm feeling progressively crappier each day that I've been on doxy, is there cause to contact a doctor about that? As in ER/urgent care? I'm going to call around about a Lyme doc tomorrow; I'm just hoping that I'm not completely incapacitated by then. (I doubt it, but I'm always on the cautious side).
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momlyme
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Is it stomach issues with the Doxy? or pain getting worse?

Diet is huge... no caffiene, no sugars of any kind, very limited starches... try eating mostly protein and adding starches slowly. We did a lot of scrambled eggs and chicken breast early on.

Lots of water. water with lemon. Probiotics(Acidophilus) are a must! take them away from Doxy and other px. We have several different brands/strands to cover all the bases.

Keebler gave this link but here it is again:
http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf The 'required' supplements in this document are really important... There are so many... magnesium & vitamin c would be where I would start. Keep adding to your supplements as you can find them, afford them, make it to the store...
We now shop on http://www.vitacost.com

--------------------
May health be with you!

Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began.

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Lymetoo
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If you contact urgent care or the ER they will tell you to stop taking the doxy .. and then they'll lecture you on taking long term antibiotics... blah, blah, blah.

However, when I was in treatment, if the herxing got too severe, I would (under direction of my LLMD) back off the meds for a day or two at most.

Then right back on. Many do not subscribe to that line of treatment, but I know it saved me a few trips to the ER or urgent care!!

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

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KiwiPi
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It's mainly stomach issues, yeah, but they're so strange, not like I take the pill and then feel sick in a little while. Sometimes that happens, but then I also get these WAVES of generally feeling sick: severe nausea (no vomiting, yet) headache, fatigue, weakness. Disorientation. The nausea is sort of a constant; I don't have much of an appetite, ever, but it seems that the nausea intensifies from time to time - not sure why, yet.

So, how long does the Herx reaction go on, anyway? I'm sure it varies from person to person, but if that's what I'm going through right now, the short it is, the better.

I need to learn more about probiotics. Normally, I drink a lot of kefir, but being that it's a dairy product, I suppose that's not the way to be going. Obviously, I have a lot more to be reading. And I definitely need to work with someone who can advise me on what I *can* take with the meds I'm on (lithium, Luvox CR, Trazodone, OxyContin). I know that some of them aren't very compatible with supplements.

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Keebler
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-
http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/101262

Topic: What does a herx feel like?

-------------
"Herx 101" (my attempt at making sense of it)
-------------

Lyme is caused by the gram-negative bacteria, BORRELIA b. - that is what is known as a SPIROCHETE, a cork-screw shaped bacteria that can sort of spring where ever it wants, not needed the blood stream for transport.

Spirochetes are particularly rough bacteria and they can take many forms to evade detection and resist treatment.

When spirochetes get irritated they emit toxins. To begin with, Borrelia b. is a very toxic infection. But irritate it and it spews forth even more toxic junk into our bodies.

So, our bodies are loaded with toxins and our liver and kidneys are overwhelmed. One reason why LIVER SUPPORT is vital to treatment.

To spirochetes, irritation to them can be nearly anything. It can be strong medicine, too much activity, too much heat, too much noise or light, etc.

That is why lyme patients feel so awful so much of the time. Even a little vibration will irritate spirochetes. Too much heat, too much movement.

Still the herxheimer reaction - from "chemical assault" (even if from a strong herb) - is very real.
---------------

http://en.wikipedia.org/wiki/Herxheimer_reaction

Herxheimer reaction

The Herxheimer reaction (also known as Jarisch-Herxheimer or Herx) occurs when large quantities of toxins are released into the body as bacteria (typically Spirochetal bacteria) die, due to antibiotic treatment or rapid detoxification.

Typically the death of these bacteria and the associated release of endotoxins occurs faster than the body can remove the toxins via the natural detoxification process performed by the kidneys and liver.

It is manifested by fever, chills, headache, myalgia (muscle pain), and exacerbation of skin lesions.

Duration in syphilis is normally only a few hours but can be much longer, up to months or years, for other diseases, especially Lyme Disease.

The intensity of the reaction reflects the intensity of inflammation present.

The Herxheimer reaction has shown an increase in inflammatory cytokines during the period of exacerbation, including tumor necrosis factor alpha, interleukin-6 and interleukin-8.[1][2]

The reaction is also seen in other diseases, such as borreliosis (Lyme disease[3][4] and tick-borne relapsing fever[5]), bartonellosis, brucellosis, typhoid fever, Myalgic Encephalomyelitis, and trichinellosis, Q fever, and cat scratch disease.[6][7]

. . . much more at link above.

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

http://www.ncbi.nlm.nih.gov/sites/entrez

PubMed Search for Medical Abstracts:

Herxheimer Reaction - 233 abstracts

Especially note herxheimer abtracts with Leptospirosis, another spirochetal infection.

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

A "herx" can also be connected to liver stress, in general. But it may not always be, technically, a herx.

Often, we call just feeling horribly icky a herx. Lyme - and lyme treatment - can be a rough ride. Not all of that is a herx and sometimes the term is overused but, in the end, liver support often helps make treatment easier and safer.


If the liver is overwhelmed, and then asked to outperform - handling too many chemicals or faced with too much exercise - it can't process out the toxins and there is a backwash, so to speak. Technically, that may not be called a herx (or it may be) but it's a toxic reaction, all the same.

More specifically, a "herx" can also be connected to porphyria, just one kind of liver stress resulting in a toxic level of elevated porphyrins. There are at least eleven kinds. More about how at least one kind is seen frequently with lyme patients:

http://drsusanmarra.com/LymeDisease/HerxheimerReactionHerx.aspx

Herxheimer Reaction (Herx) a LL NDs explanation and suggestions

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

http://www.klinghardtacademy.com/images/stories/powerpoints/autism%20protocol%2009.pdf?chakra_shop=091fbfd82767a7016c134abeaf0114a2

FOUNDATIONAL PROTOCOL for AUTISTIC SPECTRUM DISORDERS

by Dr. DK, MD, PhD - 147 pages - September 2009

See these pages first:

p. 32 Detox: reducing toxic burden from vaccine adjuvants

Never give Tylenol . . . (it reduces glutathione production and makes thimerosal more difficult to clear from the body) . . .

p. 40 Magnesium

p. 68 Exit Routes (Kidneys; Liver/Gallbladder; Skin; Colon)

p. 69 Starts Toxin Elimination

p. 76 Supporting the Kidneys

p. 77 Liver support

p. 78 Natural Anti-inflammatories

p. 80 - 82 General Detox Support

p. 124 - 127 Herx Support
-

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Keebler
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-
To help GI issues:

DGL, Slippery Elm, Marshmallow Root(from the plant, not the fluffy confection) - and Gum Mastic.

A gluten-free diet is also very helpful.

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

http://en.wikipedia.org/wiki/Deglycyrrhizinated_licorice

DGL is Deglycyrrhizinated licorice

Deglycyrrhizinated Licorice, also known as de-glycyrrhizinated licorice, or commonly referred to by the acronym DGL, is typically used as an herbal supplement in the treatment of gastric and duodenal ulcers. It is made from licorice from which the glycyrrhizin has been removed.

The usual dosage is 760 mg, chewed, 20 minutes before a meal. Studies of DGL in humans and animals against placebos showed that DGL significantly reduced the size of gastric ulcers and hastened healing, with 44% of the subjects obtaining complete healing, as opposed to 6% of the control group.

DGL has also been found to be an effective treatment for duodenal ulcers. In another study a group of 40 patients who had duodenal ulcers for 412 years were treated with 3 grams of DGL a day for 8 weeks, or 4.5 grams a day for 12 weeks, with all subjects showing vast improvement, with the higher dosage being the most significant.

An additional study shows that DGL's therapeutic effect is equal to the effect of cimetidine (Tagamet). . . .

. . . There are no known drug interactions with drugs used to treat ulcers. In Europe, South Africa, and Canada, DGL is marketed in a medicinal preparation called Caved-S. In the U.S., DGL is marketed as a herbal supplement.

DGL has also been reported to help treat aphthous ulcers (canker sores).[1]

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

www.vrp.com/articles.aspx?ProdID=art2233&zTYPE=2

Gastrointestinal Support: Proactive Steps to Strengthen GI Health -- By Chris D. Meletis, ND

Article at link.

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

www.ncbi.nlm.nih.gov/sites/entrez

PubMed Search:

Deglycyrrhizinated Licorice - 17 abstracts

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

From The One Earth Herbal Sourcebook (Tillotson) Home: http://oneearthherbs.squarespace.com
----

http://oneearthherbs.squarespace.com/important-herbs/licorice-root-glycyrrhiza-glabra.html

LICORICE ROOT (Glycyrrhiza glabra)

WHAT IT DOES: Licorice root is sweet in taste and cooling in action. It detoxifies poisons from the blood and liver, and reduces general inflammation and pain.

It moistens and heals the lungs and digestive tract.

Excerpt:

. . . Almost 50 years ago, a scientist by the name of Revers reported that licorice paste reduced abdominal symptoms and caused radiographic evidence of ulcer healing.

However, about 20% of patients developed edema, headache and other symptoms due to overdose, leading to a loss of enthusiasm (Schambelan, 1994).

This led to the development of DGL (deglycyrrhizinated licorice), a form of licorice that does not contain the agents responsible for the side effects such as electrolyte changes.

The de-acidified DGL tablet or capsule form used in Europe and America is therefore devoid of any major side effects, and is effective for healing the intestinal membranes. . . .

- Full chapter at link above.

-=============

Just is just one of several similar products out there. DGL has saved the life of my stomach and can stop reflux within a minute.

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

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

Articles Search results for DGL

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

http://www.vrp.com/ProductPage.aspx?ProdID=7072

Ceasefire

DGL (Deglycyrrhizinated licorice extract) 300 mg

Gum Mastic (Pistacia lentiscus resin extract 4:1) 150 mg

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

http://www.vitacost.com/productResults.aspx?ss=1&Ntk=products&x=0&y=0&Ntt=DGL

A list of various brands of DGL (Deglycyrrhizinated Licorice) - many are chewable so they will soothe the esophagus and cool reflux.

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

http://www.celiacsolution.com/hidden-gluten.html

Hidden Sources Of GLUTEN

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

If CANDIDA is causing the pain, in addition to PROBIOTICS, I have found OLE (Olive Leaf Extract) to be fabulous to help heal the gut from fungal issues.
-

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Keebler
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-
If you have no irritation or agitation/anxiety, you might try a very little L-Glutamine powder as that can really help heal stomach tissue.

However, for anyone with any nervous system irritation, adrenal exhaustion, anxiety or seizure disorder, proceed with caution and balance with something to minimize the NMDA excitatory reaction.

Pros and Cons are discussed here:

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/99134?

Topic: L-Glutamine powder
-

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Lymetoo
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Would you like me to move this to Medical Questions? There's an awful lot of medical information here. And it's a great way to introduce yourself.

(Later, your support questions would go in General Support.)

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

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KiwiPi
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Sure...I would be fine with that. [Smile]
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momindeep
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Kiwi,

Where do you doctor in Hudson? Is it the Hudson Clinic by chance?

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Lymetoo
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quote:
Originally posted by KiwiPi:
[QB] Sure...I would be fine with that. [Smile]

off we go!

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

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BHealthyNow
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I have had horrible digestive issues with doxy, but it is a life saver for me. Definitely don't lie down after you take it. It can cause serious reflux issues. You might also need to take an anti-reflux med while you are on (I take Nexium 2x/day AND I'm on IV doxy, which also causes GI distress).

Good luck.

--------------------
Lyme, Bart, possible Babs
Currently on IV Doxy, Bactrim, Zithromax, Nystatin, Mepron
Been on nearly every antibiotic since 10/09

About 60% improvement. Dizziness, air hunger remain.
http://lemonandlyme.blogspot.com

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KiwiPi
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As dumb as it is, our insurance doesn't cover ANY docs in Hudson...it kicks us east to Menomonie, or Eau Claire for specialists.

One thing I haven't seen much about so far is how Lyme affects the nervous system. Over the summer, I developed HORRIBLE anxiety, and more recently, heart palpitations and tics. Often, I feel like I'm going to have trouble breathing--but it goes away eventually. Is this all in my head? I guess nothing would surprise me at this point.

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marypart
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Everything you write says Lyme and co-infections.

Most LLMDs don't take insurance. You have to use your out-of-network benefits. Hopefully you have some.

Lyme infects the nervous system, and lots of people get anxiety.

I hope you find a good LLMD soon.

Good luck.

--------------------
Son, 26, Dx Lyme 4/10, Babs 8/10
Had serious arthritis, all gone.
Currently on Valtrex
Daughter, 26,bullseye 7/11
arthritis in knees, cured and off all meds. .
Self:Lyme, bart, sxs gone, no longer treating.

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Carol in PA
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quote:
Originally posted by KiwiPi:

I developed HORRIBLE anxiety, and more recently, heart palpitations and tics.


These are symptoms of low magnesium.
The Lyme bacteria uses up the magnesium in our cells, so many Lyme patients are deficient.
Low magnesium causes many of the symptoms of Lyme.

The Importance of Magnesium to Human Nutrition
http://www.mbschachter.com/importance_of_magnesium_to_human.htm

Carol

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KiwiPi
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OK, I can't quite decipher this. This was posted on the website for the clinic system covered by my insurance. The clinic

"sees and treats persons with Lyme disease. Evaluation of such patients generally follows the clinical practice guidelines as published by the Infectious Disease Society of America (Clinical Infectious Disease, 2006:43,1 Nov). Laboratory testing is often done to confirm the diagnosis. Such testing must be done by an accredited, reliable laboratory, using validated testing methods and interpretive criteria as defined by the Centers for Disease Control and Prevention."

I've been looking back through this thread but I can't seem to find what I'm looking for, re: standards for diagnosing Lyme. (My head is swimming right now). Are there any red flags here that indicate I shouldn't check them out? I can't imagine it would be so simple to find a reputable doctor. Sorry if I sound like an idiot. [dizzy]

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momlyme
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Yes, my son has this bad...

Excerpt from Dr'B's guidelines:
Magnesium deficiency is very often present and quite severe. Hyperreflexia, muscle twitches, myocardial irritability, poor stamina and recurrent tight muscle spasms are clues to this deficiency. Magnesium is predominantly an intracellular ion, so blood level testing is of little value. Oral preparations are acceptable for maintenance, but those with severe deficiencies need additional, parenteral dosing: 1 gram IV or IM at least once a week until neuromuscular irritability has cleared.

--end quote

My son was taking magnesium oxide with very little change.

Also from Dr B's guidelines:
Magnesium supplementation is very helpful for the tremors, twitches, cramps, muscle soreness, heart skips and weakness. It may also help in energy level and cognition. The best source is magnesium L-lactate dehydrate (Mag-tab SR, sold by Niche Pharmaceuticals: 1-800-677-0355, and available at Wal-Mart). DO NOT rely on cal-mag, calcium plus magnesium combination tablets, as they are not well absorbed. Take at least one tablet twice daily. Higher doses increase the benefit and should be tried, but may cause diarrhea. In
some cases, intramuscular or intravenous doses may be necessary.

--------------------
May health be with you!

Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began.

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Keebler
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-
KiWiPi:

No, you do NOT want a doctor who goes with the IDSA (Infectious Disease Society of America ) as you posted:

"sees and treats persons with Lyme disease. Evaluation of such patients generally follows the clinical practice guidelines as published by the Infectious Disease Society of America (Clinical Infectious Disease, 2006:43,1 Nov). . . .

Please take a look at these again - they explain WHY you need an ILADS doctor, NOT an IDSA one:
----------------

http://www.ilads.org/lyme_research/lyme_articles4.html

Lyme Disease: Two Standards of Care

by Lorraine Johnson, JD (revised 2005)

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

http://www.clinicaladvisor.com/controversy-continues-to-fuel-the-lyme-war/article/117160/

CONTROVERSY CONTINUES TO FUEL THE "LYME WAR"

Discusses differences in the methods of the IDSA from those of ILADS

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

http://www.lymedisease.org/news/lyme_disease_views/592.html

THE HUMAN FACE OF TICK-BORNE DISEASE - by Pamela Weintraub

October 11, 2010 at the Institute of Medicine (IOM) Talk on state-of-the-science Lyme workshop. She is author of CURE UNKNOWN

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

http://tinyurl.com/5crsjv

CURE UNKNOWN: Inside the Lyme Epidemic (2008) - by Pamela Weintraub

This details what an entire family went through. Having this knowledge of their journey will help others to get better, faster treatment.

http://www.cureunknown.com

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

http://www.underourskin.com

Documentary: UNDER OUR SKIN

(you can purchase for $35 at the site or see if you local lyme support group has a copy to lend.)

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

www.canlyme.com/seronegreasons.html

(27) REASONS WHY A SERONEGATIVE TEST RESULT MIGHT OCCUR

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

One of the best labs for TBD:

www.igenex.com

IGENEX

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

Dr Cs Western Blot explanation is discussed here:

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=042077#000000

and

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=042077
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
KiwiPi
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Keebler - thank you for pointing those links out to me again. That's what I was looking for.
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Keebler
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I'm sorry all this is so complex and that it's so hard to find a good doctor, etc. Be sure to contact your area lyme support groups.
-

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jackie51
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Anaplasmosis is so very similar to lyme, so everything said applies to you. That's what I started with, was Ehrlichiosis. My lyme test was negative but fortunately my doctor kept taking my blood because I had other things that weren't right with it. My primary told me that if you have had a tick bite, it's probably lyme, bart & babs. For me and you, it's probably all of that. Once you've treated the anaplasmosis, which will take months of doxy, you'll probably figure out which co-infection to treat next. Never take Doxy on an empty stomach, never take it at bedtime.

Good luck.

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KiwiPi
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I'm feeling a little upset with my GP for just telling me to take two weeks of antibiotics and call him a week after I'm done.

Today is a bad day. I seem to be having trouble chewing and trouble swallowing. When I woke up, I felt so stiff that it was hard to turn in either direction. My head will NOT stop hurting.

I got the name of an NP here in Wisconsin from the WI Lyme group on Yahoo. She's over two hours away from me, but it doesn't seem like that's too bad of a drive compared to some.

My husband has become a complete ass where all of this is concerned. He just told me a bit ago that he "doesn't want" to know all the details of anaplasmosis because he doesn't see why it matters. Nice to have such supportive people around me. (Sorry about the venting).

KiwiPi

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Carol in PA
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quote:
Originally posted by momlyme:

My son was taking magnesium oxide with very little change.


Magnesium oxide is poorly absorbed.

I like Source Naturals Ultra-Mag, which has magnesium citrate, taurinate, malate, glycinate and succinate.
http://www.iherb.com/Source-Naturals-Ultra-Mag-120-Tablets/1415?at=0

Those tablets are very large, as magnesium is bulky.

Peter Gillham's Natural Calm has mag citrate.
http://www.iherb.com/search?kw=peter%20gillhams%20natural%20calm

Carol

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jackie51
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For a long time, my husband always blamed my illness on something I did or didn't do. Or, I was just aging and needed to accept it. Sometimes he acted like it was in my head.

You have to remember (sorry guys) that if and when he gets sick, he'll be sicker than you ever were and that's why he's more miserable.

Lyme disease is here to stay, unfortunately, and it is in our best interest to learn everything we can. First, we get ourselves better. Then, we are vigilent about staying better. Then, when someone in our little world gets sick, we can help them. Or, we just help out others on the board, because, really, at this point they are the only ones who understand.

You can do anything you set your mind to, with or without your spouse's support. At this point, he really just doesn't understand, and then, neither do a large part of the medical field which is full of doctors who refuse to treat it properly.

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momlyme
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Thanks Carol - I know that Mag. oxide is not absorbed well (now) but I did not know that when I was first buying supplements. We are heading to Wal-Mart tomorrow to see if they still carry the Mag-tab SR, sold by Niche Pharmaceuticals. If not, I will be ordering some online. Either iherb or vitacost. I have also been looking into mag oil - but my LLMD does not think this is enough... says we need an oral.

KiwiPi - I am so sorry your hubby is not supporting you right now. Give him time. Pray for him to understand. I don't know you or him... but I believe people need time to get used to a new idea.

He may think because you don't look sick, you are not sick. That is the sad part of this disease. My daughter thought my son was faking it to get out of chores. She might still feel that way some days...

I still think the movie, Under Our Skin - http://www.underourskin.com ($35) is a good way to teach someone how serious this disease is.

I pray your husband learns to give you the support you need. In the meantime, here's a hug.

[group hug]

--------------------
May health be with you!

Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began.

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Lymetoo
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Please go here to find an LLMD in WI. Don't settle for less than that.

Link to Seeking a Doctor:
http://flash.lymenet.org/ubb/ultimatebb.php/forum/2

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

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KiwiPi
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Thank you, everyone, for the hugs and support. It means a lot. [Wink]

I'm definitely going to check out "Under Our Skin." I think there's a bit of denial going on around me, with my husband and with my mom. My mom, who is completely supportive of detoxing and natural remedies for more "everyday" reasons, was even speculative about me trying to find an LLMD. There's this collective trust of the medical profession, it seems, and also maybe the sense that because TBDs are quite common in our state, that docs must simply know how to treat them. I'm not so trusting. Five years ago, I contracted viral meningitis on the job and it was misdiagnosed at first, mainly due to doctor "opinion" on my spinal tap results. I just don't feel like they know what they're doing.

I'm not thrilled about the NP I'm planning on seeing...she doesn't take insurance...but I can't see it being worth getting "wrong" by not seeing a provider who knows how to treat TBDs. I feel so terribly toxic and sick right now, and I need to get a concrete plan nailed down.

Aura

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lymeinhell
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Hi Aura

I was in the same boat you were re the neck/shoulder pain and sent to a Pain Mgt Specialist (pre-diagnosis). I too fell prey to the cervical epidural procedures, which in the end made me feel MUCH WORSE. And I too had my pain blamed on herniated discs from a car accident 15 yrs prior.

Anyhoo, you were on the right track when you mentioned it was MUSCLE pain. Carol gave you important information regarding Magnesium deficiency.

What she didn't clearly point out that I feel you should look for are Muscle Spazms. (Even my pain guy missed them).

The Mag deficiency causes these spazms - they may look or feel like lumps around the base of your skull, your shoulders, neck region. Just poke around with your knuckle. Find a sore spot and lump any place? The back of my skull was COVERED in them, and they refer pain all over the place. ie. through your ear, jaw, over the top of your skull to behind your eye or making to top of your skull sore, down your arm to your shoulder. If you find one, press really hard and see if the pain elsewhere stops.... If so, you've found one and you've also now figured out what 'referred pain' is.

These things are combatable, and your Pain Mgt guy could help you with this (and insurance should cover it). They give Trigger Point Injections of lidocaine directly into the spasms. (lidocaine only, NO STEROIDS or what they like to call anti-inflammatories). The needle point helps bust the spazm in the muscle and returns blood flow to the area. Plus the lidocaine BLISSFULLY numbs the whole area. I can recall getting up to 7 shots at one time.

Trigger point injections may only provide temporary relief at first, depending on the severity and multitude of spazms you may have. You may have to return for another series in 10 days or so. Took me a few rounds to completely get rid of them.

Then you also need to address the CAUSE of the spazms, which is Magnesium deficiency. For this, the most effective route is IV Magnesium Chloride, followed by IM (inter muscular) IM Sulfate shots.

The thing is, once your body gets low on magnesium, taking an oral supplement will not get you back to normal levels. The body can only absorb a tiny amount at one time. The rest literally ends up in the toilet. An IV is not a big deal - just a bag and a needle and 30 minutes of your time.

Until you can get your hands on a doctor that will properly treat you (and that includes addressing the magnesium deficiency), I would suggest getting a topical Magnesium oil such as Ancient Minerals Magnesium Oil. You spray it on thin skinned areas of your body numerous times throughout the day. It's a bit itchy, but way more effective than taking an oral supplement.

Hope this helps you.

--------------------
Julie
_ _ ___ _ _
lymeinhell

Blessed are those who expect nothing, for they shall not be disappointed.

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KiwiPi
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I've had several knots/areas that spasm for the last few months, mainly in my neck and around my right shoulder; they correspond to the bulging disc in my neck--which has only gotten worse with this infection. The spasms are bad enough that sometimes it feels like there's something crawling around underneath my shoulder. They've tried a few types of muscle relaxants, trigger point injections (steroidal--before I was diagnosed with a TBD)and opioids, which have given me the most relief so far. At least, for the time being, I don't notice the pain much. I'll have to ask my pain doc about the lidocaine injections.

I now have an appointment with an NP who specializes in TBDs..I had a really good phone conversation with her this morning, and feel a little better even knowing that I have the appointment.

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lymie tony z
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I guess everybody around here is still hung up on calling these TBD's Lyme disease exclusively.

If you've read anything substantial from the ILADS folks or even just Dr B....

(even here on lymenet with the blue underlines),

they should have clearly shows anaplasmosis as one of the little crummy diseases

that come along for the ride down the saliva tubes of the blood sucking varmit that bit you!

Of course you could have picked it up any number of ways...

but the above would be my best guess for contracting the

(IDSA and CDCP are calling a misnomer!

Tick or other vector borne diseases should not all be filed

under the lyme-disease category! However this is what generally [email protected]

Just as I was getting off of the puter in another area discussing "Mitral Valve Regurg"

I plunked down in front of the boob tube only to see the latest actor talking about

his "Mitral Valve fibrilation/mini stroke and the

"just out of the test tube box or labrat cure for such a malady!

And darned if I did'nt get rid of mine with KETEK
an ABX that they took off the market because of some liver problem complaints.....I took it lots of times....well three to four times anyway....

danged if it did'nt subdue most of the mitral valve problems I had....

probably because of the cystic forms of the chetes not allowing that

heart valve to close properly...so it kinda whistled in the bloodflow....!

Oh Boy!

Did I ever tell you the one about the lab test I was asked to become a part of while down in

Florida....not more then a few months I was back up in Cleveburg and they were advertiing

the same drug in the test at a much increased dose to combat the pain of
fibro/myalgia....

that's right....folks....llyrica......

I doubt the testing is conclusive or even finished for that matter!

Does Big Pharma think that the whole country is filled up with lyme desperate morons who believe

the actors and actresses playing patients or doctors on our television sets?

At least they discuss SOME of the side affects....

ya know like "sudden death" and little things like that!

What's SUPER DISAPOINTING is the religious shows on different stations....like the J. Baker

man show....fresh out of "COLLAGE" and back to his old tricks again....white hair....

then black.....now a ball cap....what....

hair transplants?


Gee....does'nt the new blondie help you look and feel young enough?

And instead of selling everyone "survival kits"

" you should be preaching how to become a part of the "RAPTURE"....duhhhhh

Get your fresh permanent grey shaded facials here folks....

with that silver-soul....that's how they pronounce it as if it's something "spiritual" for crying out loud!

You folks have got to be kidding! It has been on all the INFORMATION SHOWS....

Nuff Said!
nope....God Bless
YFICHRIST
AMZ.,Sr


good luck
zman

--------------------
I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman

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Keebler
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-
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD or LL ND should know about:
----------

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=069911#000000

TIMACA posted 03 August, 2008

I would encourage EVERY person who has received a lyme diagnosis to get the following tests.

- at link.
-

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