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 » Medical Questions » Does anyone here have Lupus? Is there any hope?

 - UBBFriend: Email this page to someone!    
Author Topic: Does anyone here have Lupus? Is there any hope?
Haley
Frequent Contributor (1K+ posts)
Member # 22008

Icon 1 posted      Profile for Haley     Send New Private Message       Edit/Delete Post   Reply With Quote 
I have had Lyme and Co-infections since 2007 and have been getting better.

I went into the Ocean and swallowed a big gulp of sea water by accident and became violently ill. I now have crazy weird symptoms of Lupus, that water was polluted.

Has anyone here been diagnosed with Lupus and have you gotten better with antibiotics?

Posts: 2232 | From USA | Registered: Aug 2009  |  IP: Logged | Report this post to a Moderator
Robin123
Moderator
Member # 9197

Icon 1 posted      Profile for Robin123     Send New Private Message       Edit/Delete Post   Reply With Quote 
Just curious - what would be the connection between going into the ocean and getting sick again? Did you exert yourself too much?
Posts: 12965 | From San Francisco | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
Haley
Frequent Contributor (1K+ posts)
Member # 22008

Icon 1 posted      Profile for Haley     Send New Private Message       Edit/Delete Post   Reply With Quote 
I swallowed water. I'll have to edit that. Most likely swallowed a ton of bacteria etc. Sewer water. I have no doubt that these symptoms started after that event, never had these types of symptoms before.
Posts: 2232 | From USA | Registered: Aug 2009  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
Did you have a test for Lupus?

Perhaps it is chemical poisoning? What kind of symptoms are you having?

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

Posts: 94529 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Haley
Frequent Contributor (1K+ posts)
Member # 22008

Icon 1 posted      Profile for Haley     Send New Private Message       Edit/Delete Post   Reply With Quote 
I have had labs. I have the results, but don't see the doc until tomorrow.

Started with diarrhea, lots of weird GI stuff, then started waking up with strange pain in different joints.

Posts: 2232 | From USA | Registered: Aug 2009  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
Assume you have already ruled out any possible food poisoning.

Did you use any sunscreens? Many contain some very harsh chemicals.

And if you did not wash off salt water immediately after being in the water, that could have also caused major irritation, along with sun exposure.

If you had any cuts or abrasions, sea water but more specifically brackish water can cause issues.

Google & scroll down to see several important articles:

brackish water, cuts, infections


Also consider any Rx, OTC products and even herbs as many can cause reactions from sun exposure.

As for water swallowed, contact the board of health to determine if that location had any microbial testing that day, etc.

Your "violently ill" reaction really needs to be reported to the health department for that county & the state.

Contact the local chapter of the Sierra Club and inquire about any industrial or agricultural run-off matters around there . . . as well as any industrial animal complexes (pigs, chicken, etc.)

And exertion, alone can cause "payback" so that is to be considered.
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Haley
Frequent Contributor (1K+ posts)
Member # 22008

Icon 1 posted      Profile for Haley     Send New Private Message       Edit/Delete Post   Reply With Quote 
Yes I did have a cut, God only knows what's in my system.

I work with some of the worlds top oceanographers, maybe I could take a sample to my work. I'm afraid to find out what's in it.

Posts: 2232 | From USA | Registered: Aug 2009  |  IP: Logged | Report this post to a Moderator
bluelyme
Frequent Contributor (1K+ posts)
Member # 47170

Icon 1 posted      Profile for bluelyme     Send New Private Message       Edit/Delete Post   Reply With Quote 
Anecdotal one of my alt doc said he cured a girls lupus rifing for giardia....got ant flagyl or alinia? That would say if its protozoal...also see microscopy thread ...

please do not take immunosuppressive tx or biologics ..if ana is up its just inflammation..

also not to scare you but there was a episode of monsters inside me where a young girl had brain ameoba ..no drugs to kill it ...etc ...consider rife bvt golden thread ...find a real good id doc or ask if llmd will do testing

--------------------
Blue

Posts: 1538 | From southwest | Registered: Dec 2015  |  IP: Logged | Report this post to a Moderator
ukcarry
Frequent Contributor (1K+ posts)
Member # 18147

Icon 1 posted      Profile for ukcarry     Send New Private Message       Edit/Delete Post   Reply With Quote 
Biomagnetic pair practitioners treat lupus, among other things. Mine is treating me for it at the moment, so I can't promise anything, but it may be worth looking into.
Posts: 1644 | From UK | Registered: Nov 2008  |  IP: Logged | Report this post to a Moderator
lookup
LymeNet Contributor
Member # 44574

Icon 1 posted      Profile for lookup     Send New Private Message       Edit/Delete Post   Reply With Quote 
Yes, there is hope for getting over lupus or at least simmering it way down.

A little off your question but it does have to do with ocean water- two cases. One off the coast in Santa Cruz, CA - surfer - became very ill.

Finally, was diagnosed with human parvo which one can get from shaking hands, etc. He has 4 children so he could have picked it up through kids carrying it and being in the cold water might have made him more susceptible to the parvo.

Next case is my own, was swimming off the coast of southern France in 1990 and got SO ill. It took me about 14 years to recover. Finally figured out I had picked up parasites.

It could have been the ocean water. It could have been from homemade pate I ate there. I have no idea. But, it definitely went neuro and when I think back it sure displayed like Lyme. We also went camping - so who knows?

Sum of some possibilities:

-Increased susceptibility to a latent existing health condition surfacing d/t ocean water.

-Parasites masquerading or adding to a health condition.

Paleo Approach to Autoimmune by Ballantyne has really helped the auto-immune issues in our son.

It would be worth running past your doc the possibility of doing the Salt/Vit c protocol for parasites.

If the ocean water was in the pacific - binders that tie up radiation like chlorella, zeolite or takisumi are helpful.

(We are all getting Fukushima fallout not just those in the swimming in the ocean. sigh. We don't have to swallow the ocean water for it to affect us.)

Posts: 764 | From Northwest | Registered: Sep 2014  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
Haley .. you might need to see an infectious disease doctor too.

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

Posts: 94529 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Way2Go
Junior Member
Member # 49960

Icon 1 posted      Profile for Way2Go     Send New Private Message       Edit/Delete Post   Reply With Quote 
Hi
Sorry to hear the seawater went for you
I had a terrible time due to an infection I picked up in Malta from fish,

probably,it comes from shellfish which I never eat but I had local fish and I guess it sat beside shellfish in the restaurant kitchen

Anyway, I just finished reading Autoimmune Fix, its onAmazon, theres a lot of really good info for lupus

the author says he cured lots of lupus patient s
The really good news is the great panel of fairly new tests he reccomends which will at least let you know for sure whether those methods wil hrlp you
Good luck

(breaking up the post for easier reading for many here)

[ 03-04-2017, 01:35 AM: Message edited by: Robin123 ]

--------------------
Sufficient unto the day...

Posts: 7 | From Devon, England | Registered: Feb 2017  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
Don't forget that most Lupus is actually Lyme.

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

Posts: 94529 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Haley
Frequent Contributor (1K+ posts)
Member # 22008

Icon 1 posted      Profile for Haley     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thank you for all the great advice. I would say Lipus is likely caused by an infection, net necessarily Lyme.

Recently , there was 150 million tons of sewage water that Mexico released into the ocean!! Holy crap 💩

My doc has tested me for a couple things, but I will be tested for more. One that came up positive was Salmonella IV. Unfortunately, my doc is out and I can't get treatment.

I have no doubt that this current illness is due to the ocean water.

Posts: 2232 | From USA | Registered: Aug 2009  |  IP: Logged | Report this post to a Moderator
momintexas
Frequent Contributor (1K+ posts)
Member # 23391

Icon 1 posted      Profile for momintexas   Author's Homepage     Send New Private Message       Edit/Delete Post   Reply With Quote 
It sounds an awful lot like a parasite.....
Posts: 1408 | From Tx | Registered: Nov 2009  |  IP: Logged | Report this post to a Moderator
map1131
Frequent Contributor (5K+ posts)
Member # 2022

Icon 1 posted      Profile for map1131     Send New Private Message       Edit/Delete Post   Reply With Quote 
A Lyme friend from our support group who was in a complete remission stage for months....went swimming in an ocean. I'm not sure if it was Gulf or not.

Bam, she is now having serious full blown MCAS issues. We've got a vacation planned this summer with grandchildren in Gulf Shores AL. I'm might stick to the pool and the chemicals.

Pam

--------------------
"Never, never, never, never, never give up" Winston Churchill

Posts: 6396 | From Louisville, Ky | Registered: Jan 2002  |  IP: Logged | Report this post to a Moderator
lookup
LymeNet Contributor
Member # 44574

Icon 1 posted      Profile for lookup     Send New Private Message       Edit/Delete Post   Reply With Quote 
From what I read, the Gulf has been heavily sprayed with COREXIT (been banned in every country but ours). [Frown]
Posts: 764 | From Northwest | Registered: Sep 2014  |  IP: Logged | Report this post to a Moderator
willbeatthis
LymeNet Contributor
Member # 31111

Icon 1 posted      Profile for willbeatthis     Send New Private Message       Edit/Delete Post   Reply With Quote 
Haley, I am so sorry to hear this. I know you will get to the bottom of it. Is there anyone that you know that could zyto scan you or use some form of energetic testing. I have always been amazed at the accuracy of my scans. This may help you solve this. I second the recommendation too of the Autoimmune Fix by Tom O'Bryan. He has done his homework and it's excellent. I do the paleo autoimmune diet and it has helped a lot with my Lyme and leanings toward autoimmune. Thinking of you Haley! I know you will get this figured and solved... Godspeed!
Posts: 857 | From Southeast | Registered: Mar 2011  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
quote:
Originally posted by map1131:

A Lyme friend from our support group who was in a complete remission stage for months....went swimming in an ocean. I'm not sure if it was Gulf or not.

Bam, she is now having serious full blown MCAS issues.

-
Please consider this as well, Haley. Mast Cell Activation Syndrome.

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

Posts: 94529 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
windingshores
Member
Member # 48600

Icon 1 posted      Profile for windingshores     Send New Private Message       Edit/Delete Post   Reply With Quote 
It sounds like the water made you sick but not sure why you think it is lupus. Did your doctor do an ANA or anti-DNA?

If you do have lupus, the sun can make you sick.

Tetracycline type drugs can induce or aggravate lupus.

I don't so much think that lupus is actually Lyme. I think lupus, or autoimmunity in general, can be triggered by Lyme.

Posts: 53 | From Massachusetts | Registered: Aug 2016  |  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

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

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.