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» LymeNet Flash » Questions and Discussion » Medical Questions » For those of you not getting better....

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Author Topic: For those of you not getting better....
momintexas
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I have been in Lyme treatment for more years than I really care to count.

I have not been able to call myself "well". Better, yes, but not "well". Close maybe, but always relapsed.

I went off all abx because they weren't helping me anymore and I had become so incredibly sensitive to everything.

I finally decided to try another route, because I really felt like I had nothing left to lose.

I already was on a careful diet, but still had symptoms and candida has set in.

I decided to try to go an herbal route along with trying to repair my gut from damage from antibiotics for so long instead.

More food sensitivities were found and parasites. Which still HORRIFIES me.

Long story short, I am 3 months in on parasite treatment and additional food elimination.

I have energy again, I feel better than I have in years.

I'm not done yet, I still have a long way to go. But I feel HUGE progress has been made.

I know there have been a lot of posts about parasite treatment on here, but I've always disregarded them.

For those of you that are not improving - parasites and a serious need for gut repair may be a big part of the problem.

Wishing answers and better health for us all.

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Tincup
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So happy to hear you are finding some relief. YIPPEE!

Thanks for sharing that info. Please also keep us updated on your progress. And if you have tips to share with those who are new to this, it would be nice.

Yes, I've seen the other posts. Did not read them either. My tiny brain can only absorb so much new stuff at a time.

Keep getting better dear one. You deserve to after all you've been through!

[group hug]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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MannaMe
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What are you doing / taking to repair your gut?

What are you doing to treat the parasites?

So glad to hear you are improving!

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spinning122
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Yes!!! momintexas, thanks so much for posting this. My story mirrors yours, and while I feel like I made much headway treating Lyme and keeping it under control with mHBOT, I kept getting sicker and sicker in other ways.... extreme food intolerances and getting worse, environmental sensitivities, exhaustion, etc. terrible gut issues, just strange things going on in my body, evidence of parasites acckkkk.

I was the same as you, never paid attention to (or wanted to acknowledge) the whole parasite business but I can't ignore it any longer. I honestly wish I had started sooner, and treated large to small...

I am about to start on parasites, so I am so glad to hear that you are improving!! May I ask what protocol you are on? (herbs, pharmaceutical)

This woman made great progress healing her gut by tackling the parasite issue:

http://rockonnutrition.net/my-top-5-unconventional-treatments-for-healing-leaky-gut/

Please keep us updated [Smile] I wish you the best in your healing and recovery!

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foxy loxy
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You go Spinning!!! Great Ideas... keep whacking away at all this stuff!
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momintexas
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Tincup.......thank you [group hug] [kiss]


I started with eliminating more food sensitivities to try to help bring down inflammation.

I did that for a few weeks, then parasite treatment was started. I guess treatment would depend on what kind you have. I was started on Wormwood.

First week was horrible sweats. One day felt like I had terrible flu. Then it was almost as if someone flipped a switch and I started to feel great.

I am doing all of this at a turtle slow pace. When I increase my wormwood dose, I get the sweats again and then it subsides and I feel good again.

The longer I'm on it, the less intense the sweats are when increasing. I just increased again today - should know tomorrow if there will be more sweating. [Smile]

I'm not sure what the next protocol will be just yet.

I know a few other people using the same Dr and we are all on different anti-parasitics and protocols.

We are doing one thing at a time to try to determine what is working vs what isn't and because of how sensitive I've become.

Also in case there are any side effects, we know which one it's from.

Once parasites are eliminated, we are moving on to gut health.

I've started drinking hot water with honey, lemon and apple cider vinegar in it to help with detoxing.

Drinking half my body weight in ounces of water a day and taking charcoal at night.

I'm still early on, so I know there is more to come. I will keep you all posted.

Thank you for the well wishes. I hope to be able to pay it forward soon.

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hopingandpraying
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Thanks for sharing this, momintexas, and I pray this is what makes the difference in your healing. It sounds like it definitely is doing something!

I am considering this for my son, because he hasn't tried it yet. A huge concern is he has allergies, so I don't know what herbals he would react to.

There is a long-running "Parasite Warriors Support Thread" here on Lymenet:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=122300;p=0

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momintexas
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Thank you for sharing that link hopingandpraying. [group hug]
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kgg
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I too, have ignored the parasite thread. Frankly, I left the board for a long while because at the time, it seemed like all anyone would ever answer to a question was parasites. It got old.

But like you momintexas and spinning122, I have recently started treating parasites due to an increase in gi symptoms. With the first dose of treatment I started to feel better.

I too, am doing the mHBO dives. They have made an incredible difference in my energy for the better. But then started these horrible episodes of abdominal cramping. Parasites.

Spinning122 thanks for posting the link to rockonnutrition. That was a good article. Especially about the probiotics.

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spinning122
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Wow thanks for sharing, kgg. I know exactly what you mean about the parasite thing getting old.

You're very welcome. I found lots of helpful articles on rockonnutrition, since I have basically every issue she has addressed.

I hope that parasite treatment and mHBOT will take you to full recovery kgg. Please do keep us updated (here or in the mHBOT thread [Smile] ) best wishes!

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kgg
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I am bumping this post back up because I ended up finding out that it was mold not parasites that was causing me to feel so poorly.

So, if you are not getting better. Or were and then got worse. Check your home for mold. For me it was located in our laundry room in the basement. We have had it remediated and my health in improving once again.

fwiw

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MannaMe
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How do you test for parasites? How do you know which ones you have?
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sixgoofykids
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I'm happy you're making progress!!! Parasites are a HUGE issue and I think MOST Lyme patients have them. Sadly they are often overlooked.

Also, they don't always show up on tests. The only way to know if you have them is to treat them. I tested negative for them, but had visual confirmation that I did have them. So nasty.

--------------------
sixgoofykids.blogspot.com

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AndyR
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Are you being treated for parasites by an LLMD or some type of other doctor?
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Marnie
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Take a hard and long look at the iron-parasite connection.

MOST pathogens use iron to replicate.

S-Ribosylhomocysteinase (LuxS) is a mononuclear iron protein. Bb uses it in guorum sensing.

Next...look at M2 macrophages which have a lot of Tf-1. (Iron transport)

A LOT of pathogens have a nice long term rental contract in M2 macrophages (repair ones). Those macrophages can't "finish off" the pathogen.

Given fast enough in an appropriate dose, doxycycline prevents the M2 type of macrophages - preventing Bb from hiding out in them.

Bb and C. Pneumoniae both can infect and camp out in HeLa cells too (cancer cells).

Look very very closely at Azithromycin even though it upregulates M2 macrophages...look at the impact on iron - such as:

AZ down-regulated cell surface transferrin receptors, but not Fc gamma receptors...

If going the "natural" route look very closely at alpha lipoic acid PLUS (add grape seed and bioperine. NOW...Amazon...600mg. Added benefit re: Hg chelation.

Daily, BID.TID? Safe esp. with regards to blood glucose levels and tyrosine (-> dopamine) down?

Just finished a GREAT book called "A cure for asthma? The author, a Wis. doc, recommends 1000mg of Azithromycin once a week for 12 weeks to cure C. Pneumoniae (NOT sexually transmitted, but is a common community acquired pneumonia that can go persistent. He believes that pathogen can trigger asthma and COPD.

Chance of getting a GP or pulmonologist to order 1000mg of Azithromycin once a week for 12 weeks = zip.

But there are a few work-arounds.

Chaga mushrooms (Host Defense brand) contain a very specific acid (betulinic acid) that can destroy C. Pneumoniae. That acid is POTENT.

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Robin123
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Marnie, if iron were being used up by parasites, do you happen to know whether people would feel more anemic?
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lymenotlite
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Buhner has a protocol for all forms of chlamydial infection, irrespective of the area of the body effected. He says that normally, most chlamydial infections will be eliminated in 30 days. The protocol may be repeated.

According to my records, in 2011 I was on azithromycin for several months, starting at 250mg and going up to 500 within a couple of weeks. After the drugs, I tested negative for C. pneumonia but a year ago when tested, I was positive.

When I'm done with Buhner's lyme protocol, I'll do that one. I hope to never go back on antibiotics because of gut damage. I probably got his protocol from his "Healing Lyme" book which includes the chlamydia coinfection.

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Marnie
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Link between anemia and inflammation...

From Wiki:

"Anemia of chronic disease, or anemia of chronic inflammation, is a form of anemia seen in chronic infection, chronic immune activation, and malignancy.

These conditions all produce massive elevation of Interleukin-6, which stimulates hepcidin production and release from the liver, which in turn reduces the iron carrier protein ferroportin so that access of iron to the circulation is reduced."

But iron is INCREASED in M2 macrophages.

Girls...MAJOR HEADS UP:

Thus, women may be at an increased risk of M2-mediated autoimmunity due to estrogen’s ability to increase Th2 responses.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2783278/

Aberrant expression of IDO is implicated in M2 polarization.

http://www.nature.com/articles/srep21319

Furthermore, placental macrophages express higher levels of indole 2,3 dioxygenase (IDO), which

catabolizes L-tryptophan.

L-tryptophan is required for T-cell activation and

***inhibition of IDO correlated to rejection of the fetus*** by the mother.

http://cdn.intechopen.com/pdfs-wm/34561.pdf

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momintexas
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Thank you for all of the replies and information! A lot of Marnie's post is way over my head [Frown]

Things are still going well. Food sensitivities are still getting better.

Focusing hard on detox and repair.

Massage therapy with lymph massage.

Parasites seem to be gone, but taking a break to do another round, just to be sure.

Still need to address the Hashimotos and trying to balance out hormones and no longer showing anemic.

This is definitely a long, slow process.

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Marnie
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"Have you been tested for common infections associated with Hashimoto’s disease?

Dr. Nikolas Hedberg has discovered that chronic infections are the most common underlying cause of Hashimoto’s disease.

Hashimoto’s disease is the most common *autoimmune* disease in the world and it is also the most common cause of hypothyroidism."

http://hypothyroidmom.com/hashimotos-disease-the-infection-connection/

(Remember "M2 mediated autoimmunity")

Go to link above for possible underlying infection triggering Hashimoto’s disease. Not surprising! I think that virus often re-activates.

IMO...it maybe worth trying Host Defense Chaga Mushroom (capsules - dosage is 2)

Those mushrooms contain BA = Betulinic acid

BA was reported to display a wide range of biological effects, including

antiviral,
antiparasitic,
antibacterial
and anti-inflammatory activities,
and in particular to inhibit growth of cancer cells.

https://tinyurl.com/z7wa2gq

My guess...likely would take many weeks to begin to notice a difference.

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momintexas
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Thank you Marnie! That was a great link.

Interesting, as I was high on EBV for years and have not thought of it being linked to Hashimotos before. Although, my Dr did say viruses. I hadn't put the 2 together though. Last time I was checked, it had gone back down.

I have not heard of Yersinia enterocolitica, but definitely will inquire about it.

I have been tested twice for H Pylori and was negative both times.

The article also mentions Cytomegalovirus, staph and strep, Rickettsia, Q fever, HTLV-1, Herpes 1,2, and 6, Rubella/Rubeola (measles), Cocksackie B virus, Parvovirus B-19, the flu and even HIV.

The only of those that I came up + for (for years) was Cytomegalovirus and strep but was negative at last check as well.

The article states:
Some of the most popular alternative treatments for Hashimoto’s disease include:

Gluten-free diets
Leaky gut protocols
Vitamin D
Selenium
Paleo-style diets


I've got this covered as well!

It's nice to see that hopefully I have found someone to help me be on the right track.

I have also eliminated corn as per my Dr's instructions for now.

He has stated that until we figure out the reason for it, the problem won't go away.

Thank you for your help.

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momintexas
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Bumping back up and update:

I continue treatment for parasites, just had an additional food sensitivity panel ran (3 weeks for results) and have started addressing hormones.

I was retested for Hashimotos and it is now showing negative.

I was excited but my Dr said we need to keep an eye on it.

I am continuing to improve. I don't mean to sound like a broken record, but parasites has been a much bigger factor than I could have ever imagined.

Addressing gut health and hormones has been too.

For those of you still not improving, please consider looking into these.

For those of you that know me, my son is doing really well now. [Smile]

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Sonoma 1
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Momintexas, I'm glad you're on the mend and have found something that works. Forgive my ignorance here, but the term "parasites" sounds rather vague to me.

How did you get a diagnosis of parasites?

Specifically, What parasitic organisms were discovered?

I would be glad to find another piece of this puzzle but am not thrilled about chasing things I don't know exist.

Thanks and kudos on your healing.

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TF
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Sonoma, perhaps this quote from what sixgoofykids said above will help to answer your question:

"they don't always show up on tests. The only way to know if you have them is to treat them. I tested negative for them, but had visual confirmation that I did have them. So nasty."

You will see the various intestinal parasites coming out in your stool.

From what Momintexas is saying, she is seeing a doctor who evidently suggested intestinal parasites. Others have said that a naturopathic practitioner is the one who directed their parasite treatments.

See this quote from a Nov. 12 post of hers above:

"then parasite treatment was started. I guess treatment would depend on what kind you have. I was started on Wormwood.

First week was horrible sweats. One day felt like I had terrible flu. Then it was almost as if someone flipped a switch and I started to feel great.

I am doing all of this at a turtle slow pace. When I increase my wormwood dose, I get the sweats again and then it subsides and I feel good again.

The longer I'm on it, the less intense the sweats are when increasing. I just increased again today - should know tomorrow if there will be more sweating. [Smile]

I'm not sure what the next protocol will be just yet.

I know a few other people using the same Dr and we are all on different anti-parasitics and protocols."


There are old threads on LymeNet with details of what folks have taken to clear parasites. Just use the "search" function near the top of the page to find some of them.

Some people report seeing intestinal flukes, also called liver flukes. But, there are many more also.

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momintexas
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Thanks TF!

Sorry, Sonoma, I didn't see your post before.

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Marnie
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Some parasites love mucin 2 which protects our bowel lining.

I wonder...

Threonine in adequate amts. is needed to make Mucin 2 which normally protects our bowel lining.


Careful if ordering - ThReonine, not Theanine.

"Mucin 2 is particularly prominent in the gut where it is

secreted from goblet cells

***in the epithelial lining***

into the lumen of the large intestine."

https://en.wikipedia.org/wiki/Mucin_2

Uhm...Bb and Cpn invade epithelial cells...wonder what the impact is on Mucin 2 if they invade those cells?

Oh, shoot...

"The numerous O-glycans on the MUC2 mucin not only serve as nutrients for the bacteria but also as attachment sites and, as such, probably contribute to the selection of the species-specific colon flora."

https://tinyurl.com/mr7opuo

Look very closely at the ingredients.


*Plus Zantac* to first rid Bb from GI track = Tritec.

"The parasite Entamoeba histolytica has a Gal-binding lectin that

anchors the parasite to the colon mucus,

probably to the attached inner mucus layer.

This allows the parasite to reside in the colon

The specificity for Gal/GalNAc of this lectin is in line with E. histolytica binding to the glycans on the MUC2 mucin."

***"In the absence of MUC2, as in the Muc2-null mice, the bacteria are in direct contact with the epithelial cells."***

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3716454/

"OspB from strain *BEP4* differs from OspB from strain B31 in that it contains *threonine* at position 253 instead of lysine and, thus, does not bind CB2...

Previous studies had shown that strain BEP4 was NOT susceptible to CB2-mediated bacteriolysis

because

its OspB contained threonine at position 253, instead of lysine, and

so could not bind the mAb."

http://www.jimmunol.org/content/164/3/1425

We previously reported on an

***IgG1κ murine mAb***, CB2,

to OspB that had complement-independent bactericidal properties.

http://www.jimmunol.org/content/164/3/1425

A very long time ago, I posted info. about IgG1k which looks to tame down the immune system.

https://en.wikipedia.org/wiki/Omalizumab

= IgG1k which binds to IgE. Stelara is another.

It's used for Crohn's disease, peanut allergies, etc. Not without potential problems!

Appears IgG1k is an antibody to IL-17

" It can thus be expected that the

inhibition of IL-17A as a therapeutic target in

autoimmune disease

would exert different physiological effects than the suppression of Th17 cell activity.

Early clinical data are now available on secukinumab (AIN457), a recombinant, highly selective, fully human monoclonal anti-IL-17A antibody

of the IgG1/κ isotype,

enabling a preliminary assessment of the effects of IL-17A inhibition in multiple autoimmune diseases."

Looks like the strain of Bb makes a significant difference!

Bb strain BEP4 contains (uses our) threonine and down goes Mucin 2 which exposes the endothelial cells to invasion of Bb.

When Mucin 2 is low (due to low threonine) this results in weight loss and diarrhea which, with the addition of threonine (supplemented, is rapidly corrected. My son.

My sis is "autoimmune" from lyme.


Human IgG1k

Human monoclonal antibody ; Blocks histamine release
http://www.dendritics.net/products/catalog

Remember to restore the antibody to OspB, Mg was needed. Mg is given to block histamine.

Tryptophan hydroxylase. l-Tryptophan-5-monooxygenase,

more commonly termed tryptophan hydroxylase,

is the rate-limiting enzyme in neuronal serotonin synthesis (Kuhar et al., 1999).

Tryptophan hydroxylase can be inhibited by numerous factors, including

stress,
insulin resistance,
pyridoxine (vitamin B6) deficiency,
insufficient magnesium,
and high dosages of tryptophan (Green et al.,
1980; Krieger, 1981; Maes et al., 1990).

In addition, ***these same factors can increase the conversion of tryptophan to kynurenine,*** making tryptophan unavailable for 5-HTP and
serotonin production. (Birdsall, 1998).

http://www.anth.ucsb.edu/faculty/blackwell/Documents/5-HTP.Pharm.Therap.pdf

[ 05-17-2017, 07:49 PM: Message edited by: Marnie ]

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