Topic: Does anyone here have Lupus? Is there any hope?
Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
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
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posted
Just curious - what would be the connection between going into the ocean and getting sick again? Did you exert yourself too much?
Posts: 13116 | From San Francisco | Registered: May 2006
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
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
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Perhaps it is chemical poisoning? What kind of symptoms are you having?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
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
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- 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
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
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
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bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
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: 1539 | From southwest | Registered: Dec 2015
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ukcarry
Frequent Contributor (1K+ posts)
Member # 18147
posted
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: 1647 | From UK | Registered: Nov 2008
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posted
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
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posted
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)
posted
Don't forget that most Lupus is actually Lyme.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
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
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momintexas
Frequent Contributor (1K+ posts)
Member # 23391
posted
It sounds an awful lot like a parasite.....
Posts: 1408 | From Tx | Registered: Nov 2009
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
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: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
From what I read, the Gulf has been heavily sprayed with COREXIT (been banned in every country but ours). Posts: 764 | From Northwest | Registered: Sep 2014
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posted
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: 859 | From Southeast | Registered: Mar 2011
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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: 96222 | From Texas | Registered: Feb 2001
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posted
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: 54 | From Massachusetts | Registered: Aug 2016
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