Topic: Herxing, toxins and why you may not be getting well
lymebytes
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This may have passed through here before, but I thought it was worth posting. Make sure to scroll down past the large intro to see the article below it titled "Why aggressive LD treatment can fail":
Truthfinder
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Very good article - it sure explains a lot -thanks!
There are a lot of terrific Lyme articles on this website - a lot more than I remember!
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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lymeHerx001
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Oh my GOD!!
This is at the same time very scarry and what I was looking for.
This IS why I am chronically sick.. All these damn toxins screwing up my pain and inflamation responses.
Posts: 2905 | From New England | Registered: Sep 2004
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lymebytes
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There are many good articles on the site.
Here is the link to over 700 of his articles, again scroll down beyond the large intro to see his articles by subject: http://tinyurl.com/37rxfp Many articles are on LD, but if you scroll a little more than half way down, there is a Lyme Disease "section".
This doctor is amazing, I've heard of him before, he also was interviewed a few months ago in Public Health Alert front page, "Ignore Bartonella and Die" : http://tinyurl.com/3yjs7j
I am glad I found this site, I am asking for the tests he recommends to see if I am eliminating toxins.
posted
So how do you fix biotoxins and biotoxin damage? Or did I miss it somewhere in the article...
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lymebytes
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Well, I am not sure, good question..but we first need to find out if our bodies can even eliminate toxins. If so we don't need to worry about it I guess.
He is located in Florida, far from me, I would see this Md if I was closer. He offers (located at the top) a free 5 minute consultation - I suppose you could set up the consultation and ask him.
Be sure to let us know...for now, get the Labcorp test and clean your dusty air ducts!
cantgiveupyet
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posted
I have the chronic lyme HLA-DR and I feel it is why I am still sick.
Im still trying to figure out what binder to use to detox.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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lymebytes
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I advice anyone interested in finding out what he uses to take advantage of the free 5 minute consult (look at top of link).
He has many books, I wonder if his books tell what he uses.
Be careful with any "binders" I used one and it bound everything good and bad and now I am Vitamin d deficient, be careful binders don't just bind toxins, they bind the good we need too.
It is better to use a blood cleanser that is natural like virgin olive oil.
But really best and safe detoxers can only be purchased from a homeopathic doctor and the best I have found are Pekana products, I wish we could order them online (a limited number can be sold directly to the public) but they are basically "prescription" natural detoxers, click on each one to see what its specific function is, for instance AILGENO is a spleen detox.Click to read each one, ask your LLMD if he can them for you: http://www.bioresourceinc.com/pekana_info.html
Our LLMD has us on several of them at the same time, they seem to work really well.
posted
Great article- now, what do we do to kill/bind them?
thanks BJG Posts: 468 | From IL | Registered: Oct 2003
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sparkle7
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I emailed it to my doctor.
He's going to look into it & let me know what he thinks.
I'll share any info he tells me.
Even if you don't live in FL, you could still get the test done. You may be able to consult with the doctor over the phone (?).
Good question - what to do about it...
Did anyone read the article about how spirochetes share genetic material in a sort of sexual way to increase resistance to abx, etc.? The stronger ones give genetic materials to the weaker ones to make them more resistant to drugs, etc. I wish people could be so cooperative...
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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lymebytes
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OH GOOD Sparkle! Let us know what your LLMD says. I am going to email it to my LLMD as well, just before my next appointment, otherwise I wont here from him right away.
The article leaves you hanging....like now what? What if we can't eliminate toxins, what do we do next?
Maybe our LLMD's can contact him and find out, he mentions at the bottom of the article that only a few doctor's know how to "handle" this. I wonder who they are??
Truthfinder
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I couldn't find any articles about how to deal with the toxin issue - and finally went blind and never found what I wanted.
I also heard that most docs don't know how to `read' the HLA panel he suggests, and I think I've heard that you have to get that book `` Mold Warriors '' to understand what the tests mean. I bought that book, but never read it; I loaned it out to somebody and now I can't remember who has it.
I wonder what the HLA test panel costs? Anybody know?
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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sparkle7
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I haven't heard from my doctor yet but I will keep you posted. It's kind of busy this time of year & I think he is moving his office.
I'll keep you posted.
I guess you have to call the doctor who posted this article to find ways around the issue (?)...
There must be some others who can understand what it all means & how to get around it.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
You can get the test done through Lap Corp.
That is what I did. My pretty well known LLMD used the Mold Warriors book to interpret it.
I think it is a great idea to get done.
My test happen to show that I have more staph in my body then most people do.
Wierd, a month later after the test was done we identified a Staph infection in my ear!!!
Hope this was helpful.
Jennifer
Posts: 111 | From San Francisco | Registered: Feb 2007
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Truthfinder
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Scott Forsgren has an excellent section of his website on Mold; he explains a bit about the HLA testing, what the results indicate, a little about how to treat biotoxin illnesses, how it relates to chronic illness, and even mentions an overlap with celiac disease! As always, the information from Scott is well-presented and very helpful. (I'm posting the link because that particular page contains no advertising that could benefit Scott.)
Also, Scott has written several articles recently on biotoxin illness that appear in the Public Health Alert newsletter. The June article is entitled `` Biotoxin Pathway Holds Key Pieces of Puzzle /i] . In Scott's newsletter this month, the feature article is entitled [i Shoemaker Unveils Authoritative Resource on Biotoxin Illnesses '' . (I am unable to read these because they are in PDF format which causes problems on my crazy computer.) Here's another link to these articles - the page contains no advertising that benefits Scott.
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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Clarissa
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Hi fellow Lymies,
I'm in the midst of being treated by this doctor mentioned. I have the 15-6-51 gene and have been prescribed cholestyramine (Brand name Questran) to bind and remove the toxins. (It's a powder that you mix in water...kind of orange flavored)
Quick Background on me: I was treated for Chronic Lyme Disease 4 years ago with 8 mos of IV Rocephin and then 18 months of ALL possible orals. I became 80% better and was able to go back to a 40 plus hour work week for three years.
However, one to two weeks before my period, I would get Lyme-like symptoms: spaciness, anxiety, depression, exhaustion, clumsiness, moodiness, rage, etc. I chalked it up to the world's worst PMS and didn't want to get greedy with my health because I was now living a "normal" life.
Cut to: I started dating a man last Fall who made me face the music. He said it was like dating Jekyll/Hyde and that maybe the Lyme screwed up my hormones? So I decided to re-visit the much dreaded past.
That's when I went to Naples, FL (I'm on the East side of FL close to Ft. Lauderdale) where I saw this Doc you're all referring to and he took no less than 40 tubes of blood from me.
Diagnosis: I had the biotoxin 15-6-51 gene, the bad mold gene AND Bartonella. This was in August. I spent 2 months just taking the cholestyramine to rid my body of all of the toxins that built up since my agressive Lyme treatment 4-years ago. Now I am on 750mg Zithromax and 900mg Rifampin (alternating days) PLUS the powder to mop up toxins while I'm killing the Bartonella.
My whole family has had Lyme/Babesia and are now getting re-tested by this doc. So far, we've learned that my mom also has the biotoxin gene and needs to start the cholestyramine asap. She was treated for 18 mos of just biaxin & plaquenil and has been functioning on a "normal" level for the last decade...but something was still "haunting" her. She and my Dad will get all of their results next week...it will be very interesting.
Ok, that's a lot for everyone to digest and it was a new concept for me but I'm slowly becoming a biotoxin "expert". If you goto http://www.biotoxin.info/webcasts, Dr B and Mold Warriors author discuss these biotoxins at great length on webcams.
I'd be happy to answer ANY questions and I DO believe I'm getting better...
Clarissa
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posted
PS>
If the link I mentioned doesn't work by clicking on it, then copy and paste website into your browser and it should bring it up...I just did it myself.
Clarissa
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I'm not familiar with the drug you mentioned. Unfortunately, before August, I never even knew what biotoxins were...so I'm not sure what the other options are to remove them if your body doesn't have the capacity to do so naturally. Sorry! Maybe someone else online will answer?
sparkle7
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posted
I have used Welchol to absorb the toxins.
I think you can also use Benicar.
I don't really like it since it causes constipation, bloating, gas, etc.
My doctor had a bunch of samples so he gave them to me to try.
I think it's similar to the cholestyramine.
My doctor told me to take it & then eat something with fat in it 45 minutes after.
That is supposed to dump the toxins from the stomach or maybe it's the gall bladder (?) to be absorbed by the Welchol...
You also have to be careful that it might interact with the other drugs you're taking - since it absorbs stuff.
I'm not sure but I'm hoping that I could use some other more natural ingredient like nanotek chitosan or zeolites to do a similar function.
I'm not sure about the chlorella... you may need extra absorbing power from other things. Just an educated guess, though.
It's good to know that there is something you can do about the genetic marker situation & we're not all doomed.
Thanks for the info Clarissa!
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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sparkle7
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Just read that chlorella & cilantro was recommended by Dr. K (from Germany) over using cholestyramine... (from Scott Forsgren's website)
I'm not sure of the dosage.
I guess it's good if you want to go the natural route.
Thanks for the info Fin24.
I really don't respond to most drugs in general - so, I don't like them much & I try to avoid them as much as I can (except pain meds which I really need right now).
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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Clarissa
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Hey Guys,
Lots of inquiries about the exact testing for these genes. I got all of my labs done at LabCorp (except for Bart which was from Fry labs).
My Mom and I are going through all of my test results right now to get the specific test. If we cannot figure it out, (so many papers, so little brain cells) my Mom will ask the doctor during her personal consultation next week.
In the meantime, check out this website (http://www.biotoxin.info) for more info on biotoxins and try to view the webcam interviews I mentioned in earlier post. The main speaker is the author of Mold Warriors and he's very articulate and speaks in laymen terms as best to his ability.
I'm still learning but I will get to the bottom of yours (and my) questions. I think WildCondor is a veteran in this area so maybe she will have a chance to respond to some of the questions posted or visit her awesome website:
wildcondor.com which is very informative.
I'm working on getting you what you need! That's why I put expert in quotes because I'm still learning...
posted
Lymebytes, thanks for posting this information. I'm very interested in this.
Clarissa, your post was so helpful -- thanks for sharing. I've pulled out my copy of "Mold Warriors" to read now. I bought it a long time ago and hadn't read it yet. I'm going to try and read the book and take in a copy of the article that Lymebyte linked to my LLMD and discuss this with him.
I'll look at the videos on the biotoxin illness website later today.
I'm wondering if this issue might be a large factor in my case.
Thanks again for the information, everyone!
Fuzzy
p.s. I also bought Dr. Shoemaker's book, "Desperation Medicine" quite some time ago and haven't read that either. So, I'll try and read both before my next LLMD appointment.
Posts: 503 | From Maryland | Registered: Oct 2007
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TerryK
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lymebytes - just curious, do you know for sure that your vit D was normal before you started the chitosan? Many lyme patients have low Vit D. I had low Vit D long before starting cholestyramine and have been supplementing vit D for years. There are many posts on LN about low Vit D.
I take cholestyramine for biotoxins and have for the past 19 months. I've also been on heavy abx so I continue to make more toxins due to die-off. My doctor gave me actos to downregulate some of the hormones that make taking cholestyramine so hard for lyme patients. I seem to tolerate cholestyramine very well but my sister who is not on actos cannot take more than one or two servings of cholestyramine. She had the genetic tests and she can't get rid of lyme toxins, spider toxins or mold toxins normally.
As far as I know, homeopathics will not do the same thing as cholestyramine. You need something that binds the toxins in a mechanical way. I take homeopathics and I love them but they generally serve a different purpose and they work differently. Of course, no research has been done on this so it's always possible that it could work but I would not take a chance if you are one like me who cannot get rid of the toxins.
I read something that said that Dr. S. (the one who discovered biotoxin illness) does not believe that chitosan works for biotoxins. I don't know if he will feel the same way about nano chitosan since it supposedly has more power than plain chitosan.
I supplement fat soluable vitamins while on cholestyramine but if you do, you will want to make sure that you are not overdosing on them because some can be dangerous if you get too much. I take cholestyramine well away from anything else. It is not easy but well worth the trouble.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Clarissa
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TerryK:
Awesome information...thanks. I'm lucky, too, because I tolerate the Cholestyramine and take about 4-5 packets of powder a day.
Question: Do you take your abx AND the cholestyramine on the same days but just space out appropriately so abx won't bind with toxins with cholestyramine?
My brain keeps picturing that taking abx and Cholestyramine on the same day will cancel the effects of each other out BUT Dr. S says absolutely not and if you just keep meds and meals an hour before or after Cholestyramine, you're fine.
Thoughts?
btw: Like your sister, I have the mold toxin gene, as well as the biotoxin gene. What a prize I am! lol
posted
Since I read this thread the other day on "When Antibiotics Don't work" I have been right on this. The MD here in Vegas, that works with our LLMD in CA is running those tests on Daughter through Lab Corp.
The MD here is kind of Lyme Literate, but is mostly for treatment of Fibro and Fatigue. She is simply awesome though and works very well with our LLMD. She speaks very highly of him and sends her Lyme Patients to him.
Personally I think most of her patients do have Lyme, but I am not going there with her. She is a smart lady and will figure it out. She sends her hard to treat patients to our LLMD.
She agreed with me on this along with the candida problem, I think my daughter has. She ordered Tons of tests. She is also familar with DR.S's biotoxin treatment.
I will keep you posted. The tests should be back in a couple of weeks.
There might really be something to this, keeping fingers and toes crossed!! By the way, Daughter is HLA-DR-4 positive.
Hugs,
-------------------- ICEY Posts: 468 | From Las Vegas NV | Registered: Jun 2005
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TerryK
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Clarissa, My LLMD has me take the abx everyday and the same for the cholestyramine. I take my morning abx many hours before my cholestyramine and my evening abx 1 hour before taking cholestyramine. I take 3 packets of the cholestyramine a day. I do notice a difference if I miss more than one dose.
Glad to hear your are tolerating it well. Yeah, sucks not to be able to get rid of toxins but explains a lot about why we are so sick. My LLMD did run some tests that showed that my cells were full of debri. He said there is no point in running the genetic tests because he is certain it is a problem for me given my reactions and the C3d Immune complex tests that he ran that showed my cells were full of debri.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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lymebytes
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Hi Terry, I can't say I did know my Vitamin D levels, but I can say while on chitosan I have never felt worse. Now that I stopped and am loading D things are settling down.
When I called the company they did admit it can absorb the essential oils, fish, d, e, a and k. So, it certainly didn't help.
I have heard short runs on "binders" are ok and that even cholestyramine can do the same thing.
They both were 'designed' to absorb oils to keep cholesterol low, it was why they were invented.
I have learned 'binders' to be cautious with, Pekana products are excellent for detoxing without blocking absorption of essential vitamins we need.
Google Pekana if interested (most of their products can be purchased through homeopathic Md offices or you can email them to find out how to obtain) they make many different detoxer's for the spleen, the liver, gallbladder, etc., etc. I am using 2 now without any ill side effects, just feeling better.
TerryK
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Thanks for responding lymebytes. From what I've read, it is not at all unusual for one to feel bad while dealing with biotoxin removal which is why actos is given to lyme patients at the same time. I guess pulling all those toxins out of the body causes a lot of symptoms.
I have been taking the pekana drainage remedies for the better part of a year and just stopped taking them a few months ago. They really helped pull the toxins out of my cells but I'm pretty sure they won't perform the same function as cholestyramine or some of the other biotoxin binders.
I know it can be hard to remove the toxins created by lyme but if you are one of those who has trouble getting rid of them, there probably aren't a lot of choices as to how to get rid of them except with binders that also remove other nutrients.
This is a fairly new area though and there is probably a lot that is unknown. It would be great if the same thing could be accomplished with pekana. They are very good products and can be purchased on the internet without a prescription. Search for pekana in google for some sites that have doctors associated with them. They will OK you to get the product by talking to you on the phone at no charge.
I'm glad you are feeling better. I do know that Vit D really helped me prior to my lyme diagnosis.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Clarissa
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Up for the folks who may have missed this important info:
posted
I'm glad I came across this thread. It's been a concern of mine.
My acupuncturist/chinese practitioner just got me started on something that is supposed to clear out dead spiroketes and their death toxins.
It's Energetix Bacteria-chord. I just started taking it yesterday. I asked her for more information on how it works so I can show it to my LLMD. It's a mix of herbs and homeopathic ingredients (which I have trouble believing in but none of it is so cut that it's just water).
I'll report back, if I can tell that it's working.
Posts: 552 | From New Mexico, USA | Registered: May 2007
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TerryK
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daisys, Thanks for sharing. That product ingredient list has nosodes in it which means it is made from borrelia itself. They are supposed to be dead though. Also bacillinum bacteria nosode. Bacteria-Chord
I'm not sure why this would be used as a detoxifier but I could see where it would be used to stimulate the immune system to kill the spirochetes. I don't know much about nosodes though.
It is listed under detox so is it supposed to stimulate the body to get rid of the debri? What if ones body has a genetic defect making it difficult to get rid of the toxins?
Please let us know how it goes.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
I have taken chlorostyramine (CM) for a year. My doctor told me not to take it for 1 hour after I have injested something and two hours after so that I have the best chance of the powder mopping up the toxins. I took actos to help relieve the symptons of CM but it gave me side effects like a back ache. It's good if you can handle it. Milk Thistle is great to detox the liver. I take 3 a day. I took Welchol for a whole but my LD said that CM works better. Just my experience.
Posts: 19 | From New Jersey | Registered: Dec 2007
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posted
forgot to mention that I take magnesium citrate to help with the constipation that comes when taking cholostyramine. My LD said I can take up to 9 a day. My LD himself has lyme and he takes 3 everynight before bed. Says that it relaxes the body too to help sleep.
Posts: 19 | From New Jersey | Registered: Dec 2007
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Clarissa
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FYI: I take magnesium citrrate, as well. I kind of look forward to it because it's a yummy grape flavor (as I have very little sugar in my diet).
The cholestyramine DOES have sucrose (small amount) but it's really your only option because, presently, the light version contains aspartame and that's a big "no-no" for all.
Please see my post on Biotoxin Gene Testing as I added important additional information this morning.
map1131
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posted
Wait a minute, Lab corp does a test that can answer if my body is eliminating toxins? Lab Corp?
Help me with a link to this test and info? I have had so much blood drawn in the last month by my gastro and Internist looking for answers and they both use Lab Corp.
I had a colonoscopy on the 11th and pathologist didn't find anything unusual. Stool samples done too. No parasites, no bacteria, etc. The gastro is a friend of ours. He sits directly in back of me at UL college football games, we've partied together (well they party, I learned to drink bottled water) for 15 yrs.
I'm sorry, but I've experienced that LC wouldn't recognize lyme antibodies if it bite them on the butt. Or any vector borne illness, at least.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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Clarissa
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map1131:
I posted the exact number of the Labcorp test on Biotoxin Gene Testing post but you'll have to have a LLMD-biotoxin-savvy doc evaluate.
I had the test and my results determined that I cannot eliminate Lyme biotoxins or mold biotoxins so I must take cholestyramine because my body cannot do it naturally.
lymebytes
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The test name is listed in the link in the first post. Reading this test is another story I guess - if you look through responses here it seems Mold Warriors explains the test result meaning.
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