posted
I saw one person post her LDI journey but haven't seen much else on this topic. Is there anyone else trying this? I am seeing a LDI doc in 12 days.
FYI .......Dr V does ph consults for LDI, from Alaska.
** edited to remove doctor's name **
[ 09-24-2015, 11:18 AM: Message edited by: sixgoofykids ]
Posts: 315 | From USA | Registered: May 2005
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posted
hello. I have begun the LDI treatment. I had one injection of 15cc a little over 10 days ago with no measurable response except very itchy injection site that still itches some even now. I had a 'Booster' yesterday that was 13cc and no response yet except a really large (2" diameter) and itching welt. I am post Lyme treatment with RA and the hope is that this treatment will calm the Autoimmune response (RA). Disappointing so far but hopeful. As others have said, the actual injection (sublingual) is really really painful, yes, like a bee sting (but not as quick). That part of it is a real bummer but i'll happily take it if it works:)
" relatively newly diagnosed and been in treatment for about 4 months. . . .
. . . diagnosed with late Lyme, have apparently had it for "years" " (end LidaLee excerpts). ---------------------
That time periods simply did not give you time enough to be "post treatment" so I'm not sure who told you that but it is of great concern that treatment for lyme has not been at all thorough enough.
You would have started about June 2014. Not sure when you stopped or if it was adequate combination, etc. But it can take several years for such an advanced case to see results from treatment.
To do anything now that messes with immune system and not ALSO address lyme directly (and whatever other coinfections may be on board), well, that could cause some problems.
If at all possible, please consult with a ILADS educated LLMD or LL ND and ask them about all this and the immune therapy you are doing, too.
"RA" is often lyme, untreated / undertreated (or other chronic stealth infection). Very often.
A lot of doctors who think this is all just overactive immune response are just at all educated in how lyme works, or some of the other stealth infections that can be alone for the ride.
Lyme "flips" immune function in a way that most doctors are clueless. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- There are some phrases in that site that really concern me. They are not truly lyme literate. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Many of us can spot the errors yet I just hope everyone knows this, too. Many new to lyme may read that and believe it and there is so much wrong even just on that one web page.
Glad you posted the link, though, so that some discussion can happen. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I am in fact with an LLMD who is ILADS educated and has been treating me for Lyme and Cos for about a year and half.
I had 6 months of combo antibiotic therapy followed by 8 weeks of IV Rocephin. I then had a 3 week break from all meds due to having Gallbladder removed despite being on Actigal.
I have been on 3 different herbal Lyme treatments continuously over the past 10 months including current treatment with Lymecare.
I am an atypical profile for RA when viewed through the traditional lense but i do in fact have a +CCP antibody which in traditional medicine is considered very definitive.
As an aside (and of some interest) on the +CCP, my LLMD feels that its very possible Scientifically that the Lyme can create the CCP antibody. Rheumies would likely disagree but i'm of the opinion that they don't know enough about Lyme to make an educated judgement.
I, and my LLD, and my General Internist are hoping the RA/inflammation is all response to a longtime, untreated Lyme infection (CDC+ through Igenex).
The theory, as i understand it, is that fully erradicating the Lyme after as long as i have had it is likely unrealistic; the LDI will hopefully stop what is apparently an over reactive response to either a perceived threat of the Lyme or a low level infection that still actually exists.
I have no idea if this will work for me but its the last stop before the Hard Core RA meds (which i was previously on for 18 months before i finally had a +Lyme test).
I will be the first to say the LDI treatment is scary but frankly, it isn't nearly as scary to me as the RA meds, and the very real risks associated with them.
I do appreciate your concern, thank you; i'm just hoping for the best.
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