so no my story. But a quick run down. Healthy young adult prior. Paramedic student when this began. Negative twice for Lyme labcorp. Igenexs positive first try
Negative on all co infections.Hla detox gene positive. I went through IV rochephin for a couple weeks. Cyst busters and Bart and babesia meds for a few weeks.
my brain is dying but no one can see anything. I show signs of bartanella but don't respond treatment. Neurophysc symptoms only getting worse. I can't think I'm Ina zombie like state. Memory has become severe and behavior worsening.
I'm on bicillin injections. I'm scared I have dementia at 22 front temporal. I no I read too much but my symptoms match i dont want to be in an assisted living. No doctor can figure out what's wrong. And I cannot afford a top notch Lyme doctor.
does anyone have any suggestions. Things I haven't tried. I have been on cholestyramine for detox which did nothing.
I don't want this thing to take my brain and who I am. I'm so thankful for this site that helps people.
Posts: 34 | From Mount Dora Fl | Registered: Feb 2014
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
When nothing else worked for me after 4 yrs of abx, I discovered that PARASITES were a MAJOR component of Lyme disease and started using antiparasitic herbals and salt/c.
Willy Burgdorfer found Filarial Worms in the ticks he dissected, but this infection has been mainly ignored even by the best LLMDs.
My suggestion would be to take a look at the PARASITE WARRIORS SUPPORT THREAD here on this board. (I will bring it back up for you to view. Also check out parasite symptoms by googling.
The treatment has to be persistent and ongoing as parasites can take several yrs to get rid of. I hope this helps you in your quest for help.
P. S. Lab testing for parasites usually comes up negative, so testing isn't that accurate. Research all you can about parasites.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
You have had a few weeks of this and that? Unless you have a very early case, this is not anything like enough treatment. If you can stay on bicillin, do it.
Can't tell you anything about the gene situation, but someone will come along that does know about it. I also have no experience with bartonella, but a lot of forum readers do.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
My mags were low normal. I have been going crazy trying to find juicer but when I buy a blender that preaches juicing it dsnt work. Hmm.
I had a lld up in Virginia. Say she is running out of ideas
Posts: 34 | From Mount Dora Fl | Registered: Feb 2014
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
I remember reading before that you cannot detox lyme. Treating lyme or anything without detoxing means you will get much worse as all of the toxins float around your body/brain. This alone can make your head hurt terribly.
So it's not dementia, you have toxins, lyme and company. Sure, you must kill the bugs, but it's equally important to get rid of the toxins they release as they die.
Detoxing is everything--without it, no one can get better. It's that crucial. People who cannot detox need more help (I have the same gene). I suggest you start doing coffee enemas as soon as possible. Nothing detoxes like them.
I couldn't fathom doing them, didn't want to, and tried everything else. Finally I forced myself to do them and it was the best thing I've done. You will feel so much better in 15-30 minutes. They are so worth it.
Also, I agree with Gael (glm111) 100%. Parasites are the number one co infection. Number one. I remember reading posts here about them, and thought it was crazy to think people had them. It was too hard for me to grasp at first, but I can tell you that I was so wrong. Hitting them has given me my brain back.
Also, there is another test that might help shed some light on gene issues. It's from 23&me (it's $100 and worth it). It pulls up all kinds of stuff like MTHFR (common), and more. Your doc can also test you just for MTHFR but 23andme tests you for so much more and it's just $100 for lots more info. There are a couple of good threads here on it.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Emtlyme...
I know from experience that the brain dysfunction is a "functional" issue, and not permanent.
I had the same severe brain issues...and never thought it would be possible to regain function, but I recovered 100% from 8 years (5 years homebound) of Neurolyme/coinfections, encephalitis, etc., and am med free, via mild hyperbaric oxygen therapy (mHBOT), which I did (and continue to do) at home...
Here's a thread (9 pages) with more information, (plus other's experiences), and/or you can PM me:
posted
As you are age 22, you qualify to apply for aid from the Lymelight Foundation - they give 10K grants to folks with Lyme between ages 3-25. I'd say fill out one of their applications!!
Agree with the suggestion to do the 23andme saliva test for ability to detox. Geneticgenie can interpret the results. If you have enzyme defects, then you'd need to work with a practitioner who understands how to boost the methylation cycles.
This is only a guess for you - I have been taking turmeric powder in capsules as well as drinking mangosteen juice. Both are strong natural anti-inflams.
I have a brain count that is going down, headed towards normal, every time we check it - it's the prolactin hormone. I mention this because I am treating my brain with these natural anti-inflams. Therefore, I think natural anti-inflams are worth a try.
Posts: 13116 | From San Francisco | Registered: May 2006
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