LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu

LymeNet on Facebook

LymeNet on Twitter




The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

LymeNet Flash Discussion
Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive


The Lyme Disease Network is a non-profit organization funded by individual donations.

LymeNet Flash Post New Topic  New Poll  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » General Support » auto-immune or lyme?

 - UBBFriend: Email this page to someone!    
Author Topic: auto-immune or lyme?
Loribelle
Frequent Contributor (1K+ posts)
Member # 6293

Icon 5 posted      Profile for Loribelle     Send New Private Message       Edit/Delete Post   Reply With Quote 
was told i have sle lupus but after a bout of bell's palsy i have been doing a lot of web surfing. now i am not too sure about lupus. may be lyme?? thing is, standard medical treatment for lupus would be devastating for lyme! so far i am doing my own thing with herbs and detoxification juice fasts. i am so confused! and sick of it all... like i 'read' in many of your posts. i had a western blot test last month, they said was negative, but reactive on 3 bands. 41KD, 66KD and 93KD IgG bands were reactive (H), none of the IgM bands were. does that mean anything? Quest was the lab that did the test. i live in rural southeast iowa and i haven't even been able to find an MD that is what i would call knowledgeable of lupus, let alone lyme! advise please! please!
Posts: 1149 | From southeast iowa | Registered: Sep 2004  |  IP: Logged | Report this post to a Moderator
zipzip
LymeNet Contributor
Member # 6226

Icon 1 posted      Profile for zipzip     Send New Private Message       Edit/Delete Post   Reply With Quote 
the interesting thing is that lyme can cause an autoimmune syndrome. so the doc's might be right but for the wrong reasons.

it is not known what causes lupus. they may be right in determining an autoimmune illness but whose etiology is lyme induced.

i would have my blood done for lyme at igenex. they are the best for lyme testing.

i would then take that info to a good immunologist. the test is important because if you do have lyme stay away from the steroids...

best of luck...


Posts: 795 | From nyc | Registered: Sep 2004  |  IP: Logged | Report this post to a Moderator
Loribelle
Frequent Contributor (1K+ posts)
Member # 6293

Icon 1 posted      Profile for Loribelle     Send New Private Message       Edit/Delete Post   Reply With Quote 
thanks zipzip... funny thing, i was just told lupus last winter, and drew my own conclusion that it is caused by parasite (or parasites) infestation. i would include spirochetes in the parasite catagory.
Posts: 1149 | From southeast iowa | Registered: Sep 2004  |  IP: Logged | Report this post to a Moderator
bg
Junior Member
Member # 46416

Icon 1 posted      Profile for bg     Send New Private Message       Edit/Delete Post   Reply With Quote 
Loribelle:

Welcome Lori to the board! I know someone else will give you TINCUP'S post on wonderful, lyme web sites she has compiled. Page 10 of her post, I have included more links I compiled.

I'm from Central Iowa; there are 6-8 LLMD/RA drs. in Iowa treating lyme. NO fulltime lyme dr. anywhere here. I passed around my private LLMD IOWA list at our last support group meeting, and someone walked off with it.

Lori, if you go to: www.marshallprotocol.com and go to the NEED DOCTORS LIST, post that you are looking for Iowa drs. and any other state you would be willing to travel too.

I had the other 7 surrounding border states to Iowa too. They will respond within 1 day to you.

Over my many 34 years of being misdx, I've been told I had borderline lupus 3 times. Never once have I been treated for that illnesses of my many 26-28 other things wrong.

Lori, do a search for "300 medical conditions mimicing lyme disease". It shows lupus, and I believe I put another web site on the initial one that gives citations on iillnesses whether they are REPUTABLE or not what they saw about lyme/lupus, etc.

Also, Brighton near Iowa City has a lyme support group. There are 2 more support groups in Des Moines and Ames.

I don't know where you live, but giving info that I'm aware of. Best wishes Lori. Betty G., Iowa


Posts: 1 | From US | Registered: Aug 2015  |  IP: Logged | Report this post to a Moderator
Tincup
Honored Contributor (10K+ posts)
Member # 5829

Icon 10 posted      Profile for Tincup         Edit/Delete Post   Reply With Quote 
Hey there..

Welcome to Lyme Net!

These folks have given you great info already.

I will add a few things if I may.

First... please check this site posted at the end of my reply.

Please take a look at the article by Dr. L concerning.. The Sensible Pursuit of Answers.

It is a GREAT article that may help explain some things...

Here is a quote from Dr. C's article about Western Blots, etc. This may also explain some things about your specific bands.

And... As you will see... the bands you have are significant.

# 93 is SPECIFIC for Bb... (Lyme disease).

Hope this info helps...

But most of all.. hope you feel better soon!

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Quote from Dr. C in Missouri... the big old corn fed mule state! HA!

"**An example of the CDC's criteria of a blot test, is if a patient has the band pattern of 41, 45, 58, 66, and 93, the CDC would call it positive.

But if a patient has a 23-25, 31, 34, and 39 band pattern, they would call
it negative. This is despite the fact that this second pattern of antigen-antibody complex bands is much more specifically associated with Borrelia burgdorferi than the first pattern.

As you can see, borreliosis is very controversial. It would be alarming if I was the only clinician who thought
that the CDC recommendations should not be used for day-to day medical practice.

Many borrelia clinicians do not use the CDC criteria. This is obvious by the fact that the IgX laboratory uses different criteria for positive.

Again, in my opinion and others', even one borrelia-associated antibody is significant, if symptoms exist. The classic triad of symptoms for borreliosis is fatigue (tiredness, exhaustion), musculoskeletal pain
(joints, muscles, back, neck, headache), and cognitive problems (memory loss, trouble concentrating, difficulty remembering what you read, depression, disorientation, getting lost).

But there are about 100 symptoms on the borreliosis questionnaire I use. Borreliosis may mimic or imitate virtually any disease. Patients often tell me that other physicians they have seen use the CDC recommendations.

This is unfortunate, in my opinion, since these physicians are not in the business of
disease surveillance, like the CDC is.

But I am biased. After seeing patients with borreliosis since 1988, attending many conferences, talking with experts, and doing research on borreliosis testing, there is absolutely no question in my mind that physicians need to not blindly accept any recommendations.

One of my hopes is that doctors will someday realize that this controversy is a signal for them to search for the truth.

Why is there such conflict in this very "political" disease if there is not substance for disagreement?

Both IgG and IgM Western blots should be done for borreliosis.

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. In regard to the outer surface proteins, think of it like the skin of a human.

On the outer surface of the Lyme bacteria are various proteins. As they have been discovered, they have been assigned letters, such as outer surface proteins A, B, and C.

The following is a brief explanation of the
test results. Again, each band is an antigen complexed (bound together) with an antibody made by the immune system, specifically for that antigen (part) of Borrelia burgdorferi.

...


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.

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

...


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.. But again, there is no universal agreement on the significance of these bands."


XXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXX

To see Dr. L's article... click here..

Links for new members


Posts: 20353 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
Loribelle
Frequent Contributor (1K+ posts)
Member # 6293

Icon 1 posted      Profile for Loribelle     Send New Private Message       Edit/Delete Post   Reply With Quote 
thank you bettyg and tincup, lots of info to evaluate... i don't know which is worse, lupus or lyme )c: but the symptoms really do match each other. well, i have a lot of reading to do, thanks
Posts: 1149 | From southeast iowa | Registered: Sep 2004  |  IP: Logged | Report this post to a Moderator
kam
Honored Contributor (10K+ posts)
Member # 3410

Icon 1 posted      Profile for kam     Send New Private Message       Edit/Delete Post   Reply With Quote 
Loribelle,

If I were you, I would make an appointment with a LLMD. You can contact the Lyme Disease Association or post under seeking doctor on this web site.

While you are waiting for the appointment....I would continue reading some of the information you were given if you are up to it.

Take care of yourself.

KAM


Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002  |  IP: Logged | Report this post to a Moderator
treepatrol
Honored Contributor (10K+ posts)
Member # 4117

Icon 1 posted      Profile for treepatrol     Send New Private Message       Edit/Delete Post   Reply With Quote 
WELCOME To LYMENET

Here's more goodys! A typical response to newcomers.

Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead.

Post for a LLMD in Seeking a Doctor. Ps remember I am not a Dr, just a fellow sufferer.

How to Search Courtesy of Danq
LymeNet Links for New Members
Newbie's Lingo

Lyme Disease Audio Network
Dr. Joseph J. Burrascano's Treatment Guidelines
CDC Website on Lyme Disease
International Lyme and Associated Disease Society

Lyme Disease Symptoms
Rashes
Co-IinfectionsThanx M

Rose's 15 Facts for Newcomers
Making the Most of Your LLMD Visit
Camp A and Camp B, The Lyme Disease Contoversy
2nd Version Camp A Camp B

Why You Can't Trust Medical Journals Anymore
Something to share with friends and family members But You LOOK Good!

Labs
MDL
Igenex Labs

Western Blot Info
FDA It is important that clinicians understand the limitations of these tests

Explaining Borreliosis (Lyme) Western Blot Tests
Explanation of Western Blot Bands
Igenex Labs on the Western Blot
Melissa Kaplan's Lyme Website Explains Western Blot
Dr. C Explains Western Blot
- Not present
+ Low
++ Medium
+++ High
+/- Equivocal = indeterminate (there, but not as intense as Low)

Drug Interactions and Other Drug Info
Drug Digest
American Medical Women's Association Tiscali Reference Encyclopedia
Herxing
What Is a Herxheimer Reaction?
What Is Herxing?
The Herxheimer Reaction

Check Diet Link Atkins Diet
Sexually Transmitted ???
Transmitted Through Sex?
Sex Question-Serious-Adult Content
Video On Demand: Blood Supply May Be Source Of Lyme Disease Infections
Good Site Canadian Lyme Disease Association
FDA on Lyme Testing
Legal Help

GreatSite
MedicalDictionary

USA Support

SupportGroups Canada

SupportGroups Australia


( No you don't always see a bite and if there's no bullseye the only way your going to be able to tell is (symptoms) and (((Maybe))) WB or lyme dot blot 3 day urine banged with abx's to free your antigens up for the test. )
See this ( . )thats the size of the larva stage tick...
Next nymph size... ( * )
Next is adult ( o ) to ( 0 )
Pretty small????? HUH

Marnies......... Ten Points Regarding Mg and Lyme Disease

Canlyme MAG


Help with Meds


Vitamins you should Know

Tests Synonyms Guide

Lab Tests Looky


How to apply Permethrin


Posts: 10564 | From PA Where the Creeks are Red | Registered: Jun 2003  |  IP: Logged | Report this post to a Moderator
pab
Frequent Contributor (1K+ posts)
Member # 904

Icon 1 posted      Profile for pab     Send New Private Message       Edit/Delete Post   Reply With Quote 
Loribelle,

Check out Dr. C's website:
www.drcharlescrist.com

He is a great doctor.

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


Posts: 2775 | From MN | Registered: Apr 2001  |  IP: Logged | Report this post to a Moderator
Lyddie
Unregistered


Icon 1 posted            Edit/Delete Post   Reply With Quote 
My daughter and I have both been diagnosed with lupus...and with Lyme. Plaquenil is a medication used by rheumatologists for lupus, and also used by LLMD's or Lyme.

Steroids are used for lupus and are a disaster w/Lyme, but rheumatologists only use them for lupus in dire situations (sorry, you might be in a dire situation, don't know). If it is really a matter of life and death, steroids can be used along with abx if you have Lyme.

Lyme (and other infections) can trigger autoimmune activity, and cause positive results for certain labs. Do you have a positive ANA? Lyme can cause that. Certain other labs are more likely due to lupus than Lyme (such as anti-DNA ) but may also be caused by Lyme. I even have a skin biopsy which was interpreted as lupus.

If you have Lyme, and your testing sure looks like it, treatment can bring ANA's back down to normal in time.


IP: Logged | Report this post to a Moderator
lymie101
Junior Member
Member # 6336

Icon 1 posted      Profile for lymie101     Send New Private Message       Edit/Delete Post   Reply With Quote 
quote:
Originally posted by Loribelle:
was told i have sle lupus but after a bout of bell's palsy i have been doing a lot of web surfing. now i am not too sure about lupus. may be lyme?? thing is, standard medical treatment for lupus would be devastating for lyme! so far i am doing my own thing with herbs and detoxification juice fasts. i am so confused! and sick of it all... like i 'read' in many of your posts. i had a western blot test last month, they said was negative, but reactive on 3 bands. 41KD, 66KD and 93KD IgG bands were reactive (H), none of the IgM bands were. does that mean anything? Quest was the lab that did the test. i live in rural southeast iowa and i haven't even been able to find an MD that is what i would call knowledgeable of lupus, let alone lyme! advise please! please!

I also live in Iowa. My western blot was overall "negative", though positive on several bands. Also had bell's palsy as one of my symptoms. Interesting is that my husband, son & mother were "positive" on western blots - they had not been as sick for as long. I think the length of your illness & extent of your illness might affect the outcome of your western blot, & since the western blot is only looking for your immune response - your immune system may not be producing sufficient antibodies. My bell's palsy resolves on antibiotic therapy, relapses when I have to withdraw from therapy for other causes. Our lyme dr. out of springfield, MO has been absolutely wonderful to work with & the drive is well worth it!


Posts: 3 | From Grinnell, IA, USA | Registered: Oct 2004  |  IP: Logged | Report this post to a Moderator
Loribelle
Frequent Contributor (1K+ posts)
Member # 6293

Icon 1 posted      Profile for Loribelle     Send New Private Message       Edit/Delete Post   Reply With Quote 
thank you lyddie...

***am i crazy or does this sound like lyme disease maybe more than systemic lupus??
***

no positive labs for systemic lupus, just clinical, which happen to be common to lyme i am finding out... ana was negative as well as all the other blood tests they do for lupus.

the most significant to lupus probably being 'lumps'. lupus profundus (panniculitis). i have had them all of the time since mid-february, (after a period of extreme stress).

they come and go, ranging in size from a pea to as large as 3" x 6" - most the size of half a walnut, raised about a half inch or more. they are VERY painful. some last a week, some last a few hours.
some turn into nasty bruises, some just turn red and hot, then go away. these are mostly on my trunk, butt and thighs but have occured on my face and arms as well. i found that lyme can cause panniculitis too.

biopsy proved "micro-abcessed cells and necrotic (sub-cutaneous) fat cells"... pathology report was not very thorough, did not tell what kind of cells other than that. i am not so sure the info was worth a chunk of my flesh, but oh well.

dr says it is very hard to kill fat cells - so that narrows the possibilites some. it'd be 'alright' if it'd just kill those fat cells evenly all over my body, especially on my tummy, thighs and butt (c;

other than that, devastating fatigue and muscle soreness, along with other soft-tissue pain and migrating arthritis pain. that part doesn't last for long periods or very often and i hope it doesn't start to as it feels like fire.

also headaches, some liver, spleen and kidney disturbances, on/off depression, alcohol intolerance (unconciousness episode after just five beers in 7 hours time), a very nasty mouth canker, reynouds syndrome, sun sensitivity, parasthesis, funny pink 'lacey' rash on my legs, have had some veins 'burst' lately, etc etc etc... all come and go with seemingly no rhyme or reason. other than the headaches which mostly are every day.

my energy levels are so low most of the time i feel practically worthless. thank God i have an understanding husband with a decent job... low energy, no stamina, then a couple of high energy days followed by what i call 'crash days' when i do NOTHING. i have many very VERY sore spots in my muscles all over my body, all the time (not the panniculitis lesions), usually symetric, some not.

i have been bitten by ticks several times that i know of, including once by the little deer tick. i am an outdoor girl - nature addict - in a tick-infested area.

am i crazy or does this sound like lyme disease maybe more than systemic lupus??

i have searched a LOT of the info from the posts here (thank you all for the input) and am going to ask my md to retest western blot thru the lab you 'lupies' recommended... i suppose i had better get an appt with dr crist.


Posts: 1149 | From southeast iowa | Registered: Sep 2004  |  IP: Logged | Report this post to a Moderator
doggiemom
LymeNet Contributor
Member # 6094

Icon 1 posted      Profile for doggiemom     Send New Private Message       Edit/Delete Post   Reply With Quote 
I too had negative ANA, but one of my doctors, who has lupus herself, was almost sure I have it or a lupus-like disease. She said it can take as long as 10 years before it actually shows up in lab work, so her official diagnosis was "pre-autoimmune" and another doc diagnosed me with Fibromyalgia.

But the lupus doc had also considered Lyme as a possibility and had sent me to be tested, but the doctors at the hospital who did the testing refused to do so. This was some time ago. I've just now found a doc to order the Western Blot but don't have my results yet.

Unfortunately, a rheumatologist did attempt to treat me with steroids several times, so if I do have Lyme, I'm sure that treatment probably hurt more than helped.

It's very frustrating when there are so many overlapping symptoms and you know you're sick with one of them but none show up in the lab work so you don't know which one to treat for.


Posts: 106 | From USA | Registered: Aug 2004  |  IP: Logged | Report this post to a Moderator
MammaLyme
Frequent Contributor (1K+ posts)
Member # 1257

Icon 3 posted      Profile for MammaLyme     Send New Private Message       Edit/Delete Post   Reply With Quote 
To Loribelle,
The doctors thought I had Lupus, then MS since I have the white spots on the brain on my MRI. Double vision etc. I was bitten in 1994 and saw a black thing going into my leg and the next day it was gone. My doctor had no idea what it was. I eventully went to 16 different docs until my daughte got lyme in 1998 and we learned about the LUAT in 2000. It showed I had lyme.
I also took the Igenex PCR, the Peptide 6 test, Quest (band 41 only), and many more. These tests only showed the lyme. I then went to Bowen research lab in FL and took their test where they show what is in your blood.
I was so very sick. No wonder, Bowen showed me that I not only had lyme but HME, HGE and babesia. I now do not have the co-infections but still have the lyme which is now chronic lyme.
go to www.lymediseaseinformation.com and www.bowen.org for more information. The Pfizer pamphlet will show you the pictures of the coinfections in the blood.

The Igenex Western Blot test is the best WB. They show all of the bands. Bands were taken out of the other western blots plus they are not accurate.

Good luck and health to you. :


Posts: 2173 | From Maryland | Registered: Jun 2001  |  IP: Logged | Report this post to a Moderator
   

Quick Reply
Message:

HTML is not enabled.
UBB Code� is enabled.

Instant Graemlins
   


Post New Topic  New Poll  Post A Reply Close Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
 - Printer-friendly view of this topic
Hop To:


Contact Us | LymeNet home page | Privacy Statement

Powered by UBB.classic™ 6.7.3


The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:

The Lyme Disease Network of New Jersey
907 Pebble Creek Court, Pennington, NJ 08534 USA


| Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Contact Us

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to Terms and Conditions.