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» LymeNet Flash » Questions and Discussion » Medical Questions » Is it REALLY Lyme, or something else?

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Author Topic: Is it REALLY Lyme, or something else?
nnlpups
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Hopefully this makes sense, I've been having a lot of trouble wording my thoughts lately.

I have been dealing with chronic fatigue, headaches, aches and pains, dizziness, brain fog, ringing in my ears, and lots of other symptoms that come and go for the last 16 years or so.

Last winter I tested positive for Lyme through Igenex(CDC negative). I was put on 2 different antibiotics for a full month, but I had to stop after 3 weeks to deal with yeast problems.
Now that I'm ready to begin treating the Lyme again, I find that I'm having doubts about my test results. I have to wonder if I got a false positive as I don't recall ever having a tick bite or bullseye rash.

A few weeks ago, my doc did some blood tests, including one for Lyme. They all came back normal except for my Vitamind d and iron levels.

I realize that the chances of me having a false negative test are far greater than that of having a false positive, but I'm just having a hard time accepting that it may actually be Lyme. I don't have a lot of energy these days, and I want to make sure I'm putting what little energy I have into tackling the right problem.

Anyone have any ideas as to what could be causing this, other than Lyme?
Here are my Igenex results from almost a year ago:

IgM: 23-25 +
31 +++
39 IND
41 IND
58 +
66 +

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Keebler
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-
Sixteen years is along time to feel awful. Still, others who have been ill for decades have gotten better with the right treatment.

As for remembering a bite, many don't recall a tick bite and most never have a rash.

Three weeks' treatment is not enough to treat lyme. You also should have been assessed/tested for other tick-borne infections.

Low iron can be indicative of babesia, one of the many tick-borne infections.

Which doctor? Your GP? Did you see a LLMD, one who is a member of ILADS? It does not sound as if you did.

When you took the abx (antibiotics) for that 3 weeks, did the doctor tell you to take a lot of probiotics and maybe even also olive leaf extract or other antifungal Rx to prevent candida in the first place?

Looks to me like you need to see a good LLMD. If you have other things a good LLMD can do a full assessment. With your test and your symptoms, it certainly points to lyme although other chronic stealth infections could also be involved.

There are ways to protect your stomach, prevent or deal with candida, support the liver and adrenals so that treatment can work for you.

There are also some very specific alternative measures but it is best to have a full evaluation first. Most LLMD are aware and incorporate portions of complementary approaches. Just be very honest with them if there is any reason you stop your medicines as there may be other ways to make this work.
-

[ 10-17-2009, 05:01 PM: Message edited by: Keebler ]

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Keebler
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-
http://cassia.org/essay.htm

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

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


www.lymeinfo.net/medical/LDSymptoms.pdf

Lyme Disease Symptoms

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

This explains WHY you need an ILADS doctor (now, it would be fantastic if your doctor can work with you for backup and support but you need a real expert):


www.clinicaladvisor.com/Controversy-continues-to-fuel-the-Lyme-War/article/117160/


From the May 2007 issue of Clinical Advisor


CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" -(author's details at link)


As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.

Excerpts:


Meet the players


The opponents in the battle over the diagnosis and treatment of Lyme disease are the Infectious Diseases Society of America (IDSA), the largest national organization of general infectious disease specialists, (and)

and the International Lyme and Associated Diseases Society (ILADS), an organization made up of physicians from many specialties. ( www.ilads.org )


IDSA maintains that Lyme disease is relatively rare, overdiagnosed, difficult to contract, easy to diagnose through blood testing, and straightforward to treat ( www.journals.uchicago.edu/CID/journal/issues/v43n9/40897/40897.html - Accessed April 6, 2007).


ILADS, by contrast, asserts that the illness is much more common than reported, underdiagnosed, easier to contract than previously believed, difficult to diagnose through commercial blood tests, and difficult to treat, (especially)

especially when treatment is delayed because of commonly encountered diagnostic difficulties ( http://www.ilads.org/guidelines.html - Accessed April 6, 2007).

. . .

" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."


`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.


"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."


. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.


- Full article at link above, containing MUCH more detailed information.

-===

Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in this article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.

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

TESTING

You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:

www.igenex.com

IGENEX

-----

There are a couple other good labs for certain tests: Fry; Clognen; Focus. Your LLMD will know.

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


Dr C's Western Blot explanation is discussed here:

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."

===========

TREATMENT

www.ilads.org

ILADS

The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.


links to treatment:

http://www.ilads.org/lyme_disease/treatment_guidelines.html

ILADS Treatment Guidelines


and

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

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


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.

----

http://www.lymepa.org/html/dr__j__burrascano_september_20_15.html

Burrascano's Powerpoint presentation 9-20-08

-------

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)

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


Find your local SUPPORT GROUP for help in finding a doctor, borrowing books, etc.:

www.lymenet.org/SupportGroups/UnitedStates

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


Post in: SEEKING A DOCTOR

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=forum;f=2

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

This book, by an ILADS member LLMD, holds great information about treatments options and support measures:


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


THE LYME DISEASE SOLUTION (2008)

- by Kenneth B. Singleton , MD; James A. Duke. Ph.D. (Foreword)

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

Web site: www.lymedoctor.com

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

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
atabase.com/lymenutritionfile1_files/Integrated-Approach-DAN.pdf

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

a good video that explains the controversy, go to this link:

http://www.kettmann.com/Lyme

It is a tape of a great show on lyme disease done by a Boston TV station a few months ago.

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

FILM:

http://www.underourskin.com

UNDER OUR SKIN

You can purchase a DVD, here: http://www.underourskin.com/store_home.html

---------

http://underourskin.com/blog/?p=450

UOS wins top award at International Health Film Festival

UNDER OUR SKIN was just awarded ``Best Feature Film-Silver Award'' at the 1st International Health Film Festival in Kos, Greece. The tiny island in the eastern Aegean sea was the home to Hippocrates, father of medicine. Over 80 films competed and were juried by industry professionals as well as physicians.


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

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=020605

MAKING THE MOST OF YOUR LLMD VISIT

From Melanie Reber

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


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 should know about:


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

TIMACA #6911 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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Keebler
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-
You mentioned ringing in your ears (tinnitus). That can come with lyme and also from some medicines - and from past damage to the ears. Most often for lyme patients, when the infections are adequately treated, it subsides and, often, even goes away. That's a lovely thing to have happen.


Details here may be of help:
---------------------

www.ata.org

AMERICAN TINNITUS ASSOCIATION

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

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
-

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abigail
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My doctor, Dr. C. in Missouri, has said that he doesn't like calling it Lyme disease, especially since he worked under the doctor who Master's disease (same symptoms as Lyme) was named after. He has said to me that he likes the term "antibiotic-responsive" disease. Does that help any? Maybe it is not Lyme. That would be wonderful. But, whatever you have, maybe abcs will help. You will have to be the judge of that.

--------------------
Dying is easy. Living is harder.

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Connieaag
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Abigail, I have never heard Dr. C say that before, I truly believe it makes sense. He has told us that "it" may not be Lyme, but it's something like that.
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Shosty
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Your test results are pretty convincing.

What was the test that recently came back normal? Was it the Elisa (which has a lot of false negatives) or the Western Blot? If the latter, was it Igenex (which some will say has false positives) or another lab like Quest (which some will say doesn't have enough bands and isn't read correctly).

Do you have any positive autoimmune tests, like ANA? That can affect some Lyme tests, with cross-reactivity, but mainly the Elisa not the W. Blot.

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Keebler
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-
Why a LLMD may prefer not to call "it" lyme - may be if someone is infected with some other strain of borreila.

http://iowa.sierraclub.org/lyme.htm

LYME DISEASE: DON'T BE SCARED, BUT BE AWARE - by Kathy Cuddeback, President of the Iowa Lyme disease Association.

Excerpt:

". . . Lyme disease is caused by a type of spirochete bacteria, called "borrelia burgdorferi".

There are over 100 borrelia strains in the U.S., over 300 strains are found worldwide. . . ."


-Article at link above.
----------

Remember, most U.S. labs only test for one strain of borrelia: lyme. And many labs do not even do the test correctly.

As well, ticks (and mosquitoes, etc.) can transmit other infections - and combinations of infections.
-

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Pinelady
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I don't think you are barking up the wrong tree. The body temperature lowered did it for me. Shamefully for 2 years I thought my thermometer was bad and I had to add a degree. No big deal. Till I realized it wasn't the themo. broke-I was.

--------------------
Suspected Lyme 07 Test neg One band migrating in IgG region
unable to identify.Igenex Jan.09IFA titer 1:40 IND
IgM neg pos
31 +++ 34 IND 39 IND 41 IND 83-93 +
DX:Neuroborreliosis

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seekhelp
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It's kind of hard to tell other professionals you're on Abx for something 'kinda like' Lyme. : )

quote:
Originally posted by Connieaag:
Abigail, I have never heard Dr. C say that before, I truly believe it makes sense. He has told us that "it" may not be Lyme, but it's something like that.


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abigail
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Dr. C. told me that that was the reason he didn't join ILADS. They wanted him to say Master's disease was the same as Lyme disease, and he wouldn't.

--------------------
Dying is easy. Living is harder.

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Pinelady
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I did not know that but I am with him. I think the different strains make for different symptoms and progression and possibly bands in testing confirmation.

--------------------
Suspected Lyme 07 Test neg One band migrating in IgG region
unable to identify.Igenex Jan.09IFA titer 1:40 IND
IgM neg pos
31 +++ 34 IND 39 IND 41 IND 83-93 +
DX:Neuroborreliosis

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coltman
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quote:
Originally posted by seekhelp:
It's kind of hard to tell other professionals you're on Abx for something 'kinda like' Lyme. : )


I decided I will call it chronic bacterial infection(s).
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Lymetoo
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Looks like Lyme to me...but I'm not a dr!

DR C's WB explanation:
http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/42077?

18: An outer surface protein.

22: Possibly a variant of outer surface protein C.

23-25: Outer surface protein C (osp C).

28: An outer surface protein.

30: Possibly a variant of outer surface protein A.

31: Outer surface protein A (osp A). 34: Outer surface protein B (osp B).

37: Unknown, but it is in the medical literature that it is a borrelia-associated antibody. Other labs consider it significant.

39: Unknown what this antigen is, but based on research at the National Institute of Health (NIH), other Borrelia (such as Borrelia recurrentis that causes relapsing fever), do not even have the genetics to code for the 39 kDa antigen, much less produce it. It is the most specific antibody for borreliosis of all.

41: Flagella or tail. This is how Borrelia burgdorferi moves around, by moving the flagella. Many bacteria have flagella. This is the most common borreliosis antibody.


45: Heat shock protein. This helps the bacteria survive fever. The only bacteria in the world that does not have heat shock proteins is Treponema pallidum, the cause of syphilis.

58: Heat shock protein.

66: Heat shock protein. This is the second most common borrelia antibody.


73: Heat shock protein.

83: This is the DNA or genetic material of Borrelia burgdorferi. It is the same thing as the 93, based upon the medical literature. But laboratories vary in assigning significance to the 83 versus the 93.

93: The DNA or genetic material of Borrelia burgdorferi.

"In my clinical experience, if a patient has symptoms suspicious for borreliosis, and has one or more of the following bands, there is a very high probability the patient has borreliosis.

These bands are 18, 22, 23-25, 28, 30, 31, 34, 37, 39, 41, 83, and 93.

This is true regardless of whether it is IgG or IgM..."

From Dr C in an update in 2005:

"The significant antibodies, in my opinion, are the 18, 23-25, 28, 30, 31, 34, 39, 58, 66 and 93."

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

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Lymetoo
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UP for "pups"

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

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Lymetoo
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up

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

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seekhelp
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That's not good. I assumed Dr. C being so famous was an ILADS member. [Frown]

quote:
Originally posted by abigail:
Dr. C. told me that that was the reason he didn't join ILADS. They wanted him to say Master's disease was the same as Lyme disease, and he wouldn't.


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abigail
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I don't think he was real happy about not being a member either, but I admire him for sticking to what he considers to be the truth.

--------------------
Dying is easy. Living is harder.

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nnlpups
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Thanks for the replies and links everyone. [Smile] I decided to make an appointment with a new LLMD. Hopefully I'll start making some progress soon, I can barely make it out of bed these days.

Shosty, I'm not sure which test my doc ran recently, but I've been meaning to get copies of all my lab results, just keep forgetting.

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Connieaag
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I think Dr. C is now calling it "tick borne illness"....... just so it's not 'Lymes'
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