We just got our results back from Igenix, 1st igenix test we took. Came back negative for babesia, bartonella, Ehrlichiosis and Anaplasma. Doc forgot to check the box to check for lyme so ordering that now.
My DS 23 was positive when this all started back in 2009 for lyme and RMSF through Quest, all bands positive.
Then in 2012 tested positive for babesia, again thru Quest. We've been treating for both since, Always negative for bartonella and other co-infections.
So does this mean he no longer has any of this? We've actually gotten rid of it? If so then why is he no better?
The things that are better is his laughing and sleeping. Been giving Japanese Knotweed which I believe did it.
He's currently on Alinia, Minocycline, Nystatin, Malarone and Cipro. Of course on multiple supps. including Neem and Core.
Did a stool test and it came back very high in Lactoferrin...90.7....normal is <7.3. Doc rx'd the Cipro for this...only taking for 14 days.
His Lactoferrin back in July 2012 was only 19.2....so it went way up in a year. Anyone have this problem, how did you take care of it?
See LLMD on the 19th to discuss all this and see what they think.
Also have appt. with neurologist in Jan. and making appt. with immunologist.
thinking of taking off all abx and just going with herbs, mainly japanese knotweed and detoxing.
Any thoughts?
Posts: 158 | From NJ | Registered: Jul 2010
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I don't have any advice, but I just wanted to say hello and tell you that I think of you and your son often and always wonder how you are doing.
I do have a couple of thoughts. The negative tests just mean that the body is not making antibodies right now. It could be that you've knocked the infection down, but I wouldn't necessarily go off the abx yet. There may still be dormant or persister cells.
Is the laughing and sleeping a very recent change? Is it really a noticeable development? That is a wonderful sign. What makes him laugh? Does it seem like he understands something you said?
You're still with Dr. H in NY, right? I say stick with it.
Just a thought-- I keep thinking about stories about people who are in a coma for years and then wake up... I keep wondering if maybe something will do the trick and your son will heal.
Did you ever treat for parasites-- I see he is on Alinia. How about biltricide, albendazole and I can't remember the other names... Ivermectin?
-------------------- Son, 26, Dx Lyme 4/10, Babs 8/10 Had serious arthritis, all gone. Currently on Valtrex Daughter, 26,bullseye 7/11 arthritis in knees, cured and off all meds. . Self:Lyme, bart, sxs gone, no longer treating. Posts: 496 | From Washington, DC | Registered: Jul 2010
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posted
Most tests for coinfections come back falsely negative. But MAYBE they are gone??
The best way to know is whether or not he reacts to the meds for each illness.
It's good that he is on Nystatin. I hope he is on a high quality probiotic too. Make sure to have him follow the anti-yeast diet because the yeast could be what is making him feel ill.
Keep us posted on the Lyme test.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Another thought. I see you are going to an Immunologist.
I was looking back over your posts, from the beginning, and it seems like you got improvement from Doxy and from Resveratrol. One time you posted that he spoke a little one morning.. after a diarrhea and he was on Doxy.
Both Doxy and Resveratrol are strong anti-inflammatories. I wonder if an immunologist would try something that just focuses on the inflammation-- like LDN or immunoglobulin or even some kind of anti-tnf like Embrel.
(OK everybody, don't start yelling at me.. this is a very drastic case and it's been almost 4 years without him speaking.)
Another thought: Have you tried any psych drugs? Maybe the neurologist will have an idea. Wellbutrin is an anti-depressant that is also an anti-tnf so it works well for people with inflammatory diseases.
Actually-- the new idea in psychiatry is that psychiatric disorders like bipolar and schizophrenia ARE immune system disorders. It will probably turn out that they are related to infection.
On that note-- has he been treated with anti-virals like Valcyte or Valtrex. Resveratrol and knotweed are strong anti-virals... so maybe there is a virus involved.
I hope I'm not overwhelming you... just brainstorming, that's all.
-------------------- Son, 26, Dx Lyme 4/10, Babs 8/10 Had serious arthritis, all gone. Currently on Valtrex Daughter, 26,bullseye 7/11 arthritis in knees, cured and off all meds. . Self:Lyme, bart, sxs gone, no longer treating. Posts: 496 | From Washington, DC | Registered: Jul 2010
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Also, check your local library for Body Ecology Diet books. My lyme doc had me get the book and follow the diet. I borrowed it from the library.
Posts: 9931 | From Maryland | Registered: Dec 2007
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We have been doing all organic (mostly), no gluten, dairy, and no vinegar for almost a year now.
Will definitely look into the diet.
He has also been on LDN for a year, never really saw any improvement when we began.
Did take him to CHOP hospital and immunogolist did extensive bloodwork but said all came back fine. But since finding out about PANDAS and specific markers they check for, don't believe she checked for those.
Yes, have tried MANY psych drugs, see Dr. B here in NJ...none of which did anything.
thank you all for your replies, I rely on this board often.
posted
Thanks TF for the body ecology website
Posts: 254 | From North Carolina | Registered: Nov 2013
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Frikfrak said, The things that are better is his laughing and sleeping. Been giving Japanese Knotweed which I believe did it. --------
I had a remarkable recovery of my mind when I took Resveratrol (Japanese Knotweed). At the time, I was starting the Buhner Protocol with a new one each week.
The week I began Resveratrol, I noticed my mind suddenly became much clearer, and I could think the way I used to.
At the same time, I developed an aching pain in my kidneys. My urine was clear, no blood, and I had no other symptoms. But I spent several days in bed with such awful pain, and I stopped all the Buhner herbs.
The pain stopped, so after a week I tried ONE tablet of Resveratrol, and the pain started up again.
Only one other person here at LymeNet has posted about having a similar problem, but it is something that you should be aware of.
How much Resveratrol is your son taking? Have you tried increasing it?
Of course, begin each new medication or herb separately, so that if you have a reaction, you can stop it right away.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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Some resveratrol is from grapes, not Japanese Knotweed.
The resveratrol I take is NOW brand, from polygonum cuspidatum (Japanese Knotweed).
You might check yours to see if from knotweed. Resveratrol is one part of the total knotweed, but is the one I take for several of its benefits.
I have had no bad effects whatever, but it also has some anti-bacterial properties, so you probably need to detox some while taking it, if you decide to try it again.
The herb andrographis I could not take for very long, but take now and then for brain fog. It is the one herb that I could not tolerate so far. There are some cautions for andrographis.
Nancy
Posts: 254 | From North Carolina | Registered: Nov 2013
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Andrographis will not help with clarity of thought or alertness. It is sedative in action.
Although, it is absolutely exceptional as an anti-inflammatory (translation: increases urine flow) . . . so with less inflammation, thinking could be clearer. I just found it too sedative (but need it as it really helped calm seizures for me).
I've taken it extensively, at the top dose for over a year and then on and off.
Berberine helps me more with clearer thinking but it's still not enough, alone, for me.
Gotu Kola can help with clear thinking but it is not a "direct" helper as these others can be, it's mostly support, as I see it.
posted
If it was me at this point I would want some indication of which infection is actually still present so that you can treat it more aggressively. Since antibody tests are not of much use I would want a blood smear from either Clongen or Fry Lab and then if it looks like bartonella is present on one of those smears I would probably stop bart meds and do the Galaxy Lab test.
I would just assume lyme is still an issue, but it is more important to identify which coinfections are still in the mix. Also would want viral testing from a specialty lab.
I would probably do the detox challenge test from Genova Diagnostics to see the status of Phase 1 and Phase 2 liver detox and that will also help assess G.I. function. Would also do the complete G.I. panel from DiagnosTechs as well.
Just some suggestions based on tests that were very helpful for hubby.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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