Considerations additional to Lyme and Co's

[PacificMama]

Hi all,

 

I’m looking for input on potential testing / lab work / consideration for things that go along with lyme and coinfections. (we are pretty well covered in considering lyme, and all the major coinfections that go along with lyme). Mostly, I am looking for feedback on things that may affect the gut.

 

This is for my youngest daughter, and we have a llmd appointment next week. She does have positive Igenex. (as a reminder, my older daughter has successfully been treated for her lyme – but was such a different case than this younger daughter). My younger daughter’s (6) major problem has been gut issues. Horrible chronic pain for years – with acid reflux, bowel issue, and frequent urination. She has many food & enviro allergies. (she does have other lyme symptoms… such as migrating joint pain, etc. – but the gut stuff is the worst).

 

We have recently started her on Nystatin for yeast, and already have seen good improvement in her complaints of pain. Shortly thereafter I started giving her bentonite clay (but at this point we are doing a smaller dosage then some here). The clay is likely helping with acid reflux and helping the pain as well. (as well as detox from yeast die-off). She now sleeps through the night, where before she woke in pain nightly. So wonderful!

 

I have held back on starting abx to see what effect the Nystatin would have alone. But I realize that lyme greatly affects the gut, so we will likely start them soon. I was thinking that we should heal her gut a bit before starting abx.

 

So, I’m looking to compile a list of things to talk to her doctor about. I know that different LLMD’s consider/test for different things.

I’m looking for feedback on what other things you have tested for / treated for / considered that may affect gut dysfunction. (Things outside of the normal lyme / co’s). Such as parasites, biofilms, etc. And if labwork was done, which labs/tests were used.

 

Thank you!

[KeithandElizabeth]

My daughter has always had gut issues (pain, acid reflux, rectal bleeding) and she was even admitted to Children's Hospital in Denver because they could not figure out what was causing her severe rectal bleeding. After negative test after negative test, including a negative cat scan, I finally got our pediatrician to give us some antibiotics and she did slightly improve. At the time we did not know she had lyme plus coinfections.

 

Anyway, 8 months later we began treating for lyme, mycoplasma and babesia and we also incorporated the high dose probiotics (between 400 and 500 billion) and her gut issues have resolved. I think the lyme plus coinfections, including strep, affected her gut.

 

She is now done with lyme treatment and is still on the high dose probiotics and we will continue this as we work with our nutritionist to get our daughter's acidity (PH's) level normalized.

 

Elizabeth

[sf_mom]

As you know.... we had gut issues post PANDAS diagnoses which ultimately brought us to Lyme Diagnoses. We had stomach aches, every color poop under the sun, lose stools, blood in stool, dairy/cassien/cheese sensitivities, etc.

 

We work with a nutritionist that focuses solely on gut repair for long term health via the bodies PH balances/toxin elimination. It is her perspective the bodies inability to process toxins creates disease and illness not the bacteria. When that body its taxed from endotoxin/exotoxin of chronic infections there is added stress on all organs. It is the liver/gut's job to eliminate toxins when it can not process appropriately those toxins will be sent out to other organs for cleansing, when they can not process the toxins they send it back to the liver/gut and cycle continues. She also believes that no supplement/herbs/vitamins will be properly absorb by one's body until this repair occurs. She focuses on three things only to repair gut.

 

• High dose probiotics (good bacteria)
  
• High dose bentonite clay (help the body eliminate excess toxins)
  
• High does b-12 (mood and nerve damage)
  

She believes these are the only items required to repair gut long term but it all needs to be in high dose to provide enough for true healing. Elizabeth, LymeMom and I work with the same nutritionist.

 

We have also hedged our bets and added IgG powder for the gut and Ketotifen to lower histamines and repair intestinal mucus lining wall all provided or prescribed by our LLMD. I think a good six months of treatment might serve her well in of advance of antibiotics. My only worries is the gut is not an easy fix a minimum of 'two years' also per our nutritionist. We have seen great results with both antibiotics 'elimination of potential intestinal parasite and bacteria' and gut focus.

 

Hope that helps. Here is what comes along with the Ketotifen prescription when received from Clarks Pharmacy.

 

 

Intestinal Permeability "Leaky Gut Syndrome":

By Mark Clark, RPh

 

 

Functions of Intestinal Mucous Layer (Epithelial Layer):

 

The mucous layer becomes damaged due to the below causes and exposes mast cells. This triggers release of histamine from mast celss that line the intestinal wall. Histamine triggers a cascade of events that leads to a deep inflammation in the intestinal wall. This causes the intestinal wall to become "leaky" or permeable and large molecules that normally would require further digestion are absorbed through the intestinal wall into the blood stream. This leads to your body's immune system attacking these large molecules and causing an allergic reaction to food. Depending on your genetic make-up, this can lead to asthma, rheumatiod arthritis, eczema, psorasis, possibly other immune disorders and cortisol/adrenal issues due to massive inflammation of the intestinal wall.

 

 

Causes of Damaged Intestinal Mucous Layer (Epithelial Layer):

 

1. Gluten Intolerance

2. Chronic stress - Stimulates cortisone from the adrenals which destroys the mucous layer.

3. Steroids - e.g. prednisone and cortisone.

4. alcoholism.

5. Certain antibiotics.

6. Parasites/dysbiosis of the GI tract.

7. Chronic use of nonsteroidals.

 

 

Summary of Events Leading to "Leaky Gut Syndrome":

 

Above causes leads to damaged intestinal mucous layer leads to increase in mast cell exposure leads to histamine release leads to inflammation of intestinal cells leads to leaky gut and adrenal stimulation leads to immune system attacking large molecules.

 

 

Other General Causes of "Leaky Gut Syndrome":

 

1. Crohn's Disease and other severe inflammatory bowel disorfers.

2. Chronic Giardiasis (parasitic infection)

- Giardia is protozoa commonly found in lakes, streams and even has been detected in drinking water.

- Initially when giardia infects the intestine the most common Symtoms are diarrhea and bloating but after several days most of these symptoms decrease and then the person infected may experience chronic bloating and other G.I. symptoms for even years if untreated (this state is called chronic giardiasis)

 

 

Treatments for "Leaky Gut Syndrome"

 

Histamine Reducers:

1. Ketotifen (Zaditen) 1mg by Sandoz.

- Compounded at Clark's Pharmacy (not commercially available in US).

- Antihistamine that reduces the harmful effects of histamine that allows the mucous layer to come back and heal the intestinal wall.

- Generally taken: 1-2 tablets (ours is a liquid subspension) 3 times daily 30 minutes before meals for about six months or up to twelve months depending on severity.

2.Cromolyn Sodium (Gastro Crom) 100mg by fisons or Cromolyn Sodium powder by various compounding pharmacies.

- Reduces mast cells from releasing histamine.

- This treatment does not generally work well in adults by itself.

- Generally taken: Dissolve 1/8 tsp in water 3 times daily 30 minutes before meals.

 

Parasitic and Antifungal Treatments:

1. Tinidazole 500mg by various manufactures and various compounding pharmacies.

- Used for chronic giardiasis and amoeda.

Generally taken for Giardiasis: Adults- 4 capsules all at once with a meal one time only (some doctors repeat it in ten days). Children- dose at 50mg per kg all at once with a meal one time only

2. Appropriate antibiotics / antifungals to treat identified intestinal parasites / yeast.

 

GI Healers:

1. Glutamine by various manufactures.

- Found in high concentrations in the small intestinal tract and is the preferred fuel.

- Generally taken: 1-5 gms per meal up to 15 gms per day.

2. Probiotics (friendly GI bacteria)

- Use only human strains and / or saccrharomyces boulardii.

- Generally taken: 1-2 capsules daily with meals.

3. Abstain from gluten if gluten intolerance.

- Extremely small amounts of gluten can cause major mucousal damage if gluten intolerance.

4. Stress Management.

5. Digestive enzymes.

- Breaks down protein and less pretein molecules (i.e. polypeptides) get absorbed into the blood stream.

6. Rotating foods and avoiding foods that irritate the digestive tract.

Edited January 14, 2011 by SF Mom

[sf_mom]

Wanted to add we used Metametrix for stool testing.

[MichaelTampa]

This is might be a little of the train you were thinking on, but it is in the category of things you can do to help gut health and digestive issues. One treatment I have used and am very pleased with comes from a company called Allergie-Immun, in Germany. They test your saliva for "errors in your DNA", and then provide energy-information drops (kind of homeopathic, but not precisely that) to "correct the errors".

 

The main benefits for lyme patients tend to be: (1) help detoxify heavy metals, and (2) help remove food allergies. This company believes many health issues are ultimately tied to autoimmunity, and the purpose of the treatment is to help the body recognize things for what they are and deal with them accordingly. For heavy metals and other nasty chemicals, help the body to recognize they should be removed. Starting this treatment frequently involves a lot of pimples, maybe some headaches, and other detoxing. For foods, teach the body they are to be digested, not attacked. It can take several months, but many report fewer food sensitivities and better digestion after a while.

 

Last I knew, it cost 450 euros to get started, plus 10 euros per bottle of drops they send beyond the first bottle. There is also a way to just spend 90 euros to get a report on what the saliva is saying at the moment, and then this can be applied toward the 450 if desired.

 

This has helped a lot.

 

I imagine this will sound kooky to several folks, and I do just want to point out, you can read that having an infection in general (and certainly lyme disease) does change a person's DNA. And, of course, autoimmunity is a big aspect of lyme disease, at least once a person has had it for a while. As an FYI, there is an absolutely huge thread on this allergie-immun therapy on the lymenet board.

[mama2alex]

I'm not sure what else to test for, but a couple of things you might consider in trying to heal the gut are digestive enzymes and/or diet changes. Gluten is often a big offender in gut issues, so maybe a trial run of a gluten free diet? Has she been tested for Celiac Disease? Even if that test comes back negative (or you skip it), a trial on a gluten-free diet could be a good idea. I had almost constant headaches for a year and a half, tested neg on wheat allergy and Celiac blood test, but once I went gluten free, my headaches were gone within 3 days. My next door neighbor has terrible stomach problems for days if she even eats one bite of gluten. Dairy can also be a problem, as I'm sure you know. A good book to read on how digestive enzymes can help is "Enzyme for Autism and Other Neurological Conditions" by Karen Defelice. Good luck! I'm sure you will figure it out soon.

[sptcmom]

We've had a leaky gut syndrome as well as per our LLMD. A leaky gut allows toxins to recirculate back.Our LLMD recommends the Klinghardt protocol for gut issues and I totally agree with the choice. Identification of dietary allergies, heavy metals,biofilms,parasites, yeast and other opportunistic infections have to be addressed. Probiotics don't necessarily have to be high dose unless antibiotics are in play, then yes, very high probio as you already know.

We use Quintessence, microsilica,freeze dried garlic, cilantro liquid, custom probiotics, A.D.P. for yeast, Sygest, Sydetox, detox baths,metabolic synergy multivit, bentonite clay,fermented fish oil and the Core for trace minerals.

 

Fresh organic diet has been key for us. Raw fruits and raw green vegetables daily.Organic Green Superfoods chocolate smoothie powder that has all organic superfoods from all groups (greens, blues, reds, organges, blues and purples), diet high in turmeric and overall spices- basil, oregano, black pepper etc

 

Water with an alkaline PH is very important. Gut issues cause increased acidity which is what causes malabsorption as per Dr Klinghardt's viewpoint and our LLMD.Increasing the Ph of water helps the osmosis process and propels the supplements into the cells. We use Eternal Springs New Zealand water or Fiji water is good too. Once a day I use electrolyte water from Biopure.

Ds and I are both doing this protocol.

Edited January 14, 2011 by sptcmom

[lyme_mom]

Hi Pacificmama, our whole family is taking the high dose probiotics (15 to 20 50 billion a day) and at least half a cup of bentonite a day. We just chug it :-). We use the nutritionist that Wendy and Elizabeth recommended. I ran this past our llmd and he said they looked like great probiotics and said it is safe to take high doses of bentonite. He said it can cause constipation but we have not had that problem. She also wants my son, who is the patient we talk about for our calls, to take colloidal silver to kill gut bugs. She says this is part of her bowel program. He has no obvious gut issues but she says anyone who gets Lyme (or anything else for that matter) has gut issues. I will try anything that doesn't hurt that can help us stay healthy. My llmd said the silver is fine but it doesn't kill Lyme and coinfections as well as Samento and Spiro, two homeopathic remedies.I like the fact that she doesnt require you to change your diet to heal the gut but it can certainly help to do so. I did it myself years ago and took some powder from Xymogen to heal the gut. It was IGG something. It was very helpful.

I think u would see some benefits pretty quickly if u tried our nutritoonist' program of high dose probiotics and bentonite and maybe the silver. A consult is 90 dollars and might be helpful.

[Fixit]

if you are interested in that internal parastie formual ds did i will pm...also treats candida...soo pleased with it

[Megs_Mom]

We did all 4 tests for Celiac. Some docs only run Igg, because of the expense, but our insurance covered it. It is critical to run all 4 because the igg test have a high rate of false positives and negatives. Our results were odd, so we did an endoscope with a gastrointerologist

 

We found multiple ulcers and did biopsies to test for both celiac and h pylori. Since both were negative, we elected to start w prevacid, which was miraculous for us. By healing that injury in the gut, we dramatically contributed to a calming of pandas issues. We will do another endoscope this year, and consider another medication if the ulcers are not healed at that time. Prevacid eliminated all stomach pain, although it is a band aid, not a cure, it does give the gut time to heal itself without a constant stomach ache. And the benefits of a child not constantly feeling throw up in her throat are likely obvious.

[NancyD]

My DD14 had gut issues for years, beginning at birth. When she was 3 we started her on a GFCF diet (also soy, dye, and additive free) and she was put on probiotics, digestive enzymes, and a variety of supplements. When she was 5 she was scoped from both ends and we learned she had severe colitis. However, even the slightest trace of gluten from cross contamination would send her over the edge. We tried a variety of meds and supplements but what REALLY cleaned up her gut was monthly glutathione IVs, which we did for a few years. DD went off her highly restricted diet very slowly when she was 10 and we discovered she was no longer sensitive to any foods other than dyes and additives. We scoped her again last summer and our pedi GI specialist found a VERY clean gut. I am sure it was the monthly Glutathione IVs that helped her. So one test I would recommend is to check the Glutathione levels. It's a simple blood test. We also did biofilm protocol for a few months but it did not help DD.

[philamom]

Well, I'm sure by now you ran some of the generic tests, but I'll list them anyway. I was suprised when my daughter tested for Giardia.

 

clostridium difficile toxin A and B

campylobacter

giardia

salmonella and shigella

ova and parasites smear

rotavirus antigen

helicobactor pylori

 

We just recently did an "OAT" test from Great Plains Lab. Still waiting for results. They also have a "MOAT" test , which I think detects more parasites.

 

I use a variety of probiotics (Custom Probiotics, Florastor, Culturelle for Kids, Theralac), but the one that seems to work best for my daughter is Ther-biotic Detox Support. She seems to have no issues when taking this product. Unfortunately, it's so expensive! I recently ran out, and saw an unpleasant change in her bowl movements...she's back on it and their again normal. Of course, every child reacts differently to products.

 

At one time, we were using Metagenics "Glutagenics" - powerful gastro lining support, but my daughter balked at the product.

 

A year ago, my daughter had a sudden onset of heartburn. We used Prevacid daily for 3-4 months. But one doctor we saw mentioned it can open the door to other stomach issues...I don't know, but it gave her relief.

 

Good luck Mary! I hope she soon finds relief!

[PacificMama]

Thank you so much to everyone for your replies! The information is very helpful.

 

I should have mentioned that I do give probiotics and various supps to my daughter. We just switched from Theralac to Custom Probiotics (I do think theralac is great, but with with the bulk powder of Custom we can regulate dosages easier for our whole family). I am going very slowly to increase dosages on things for her -- she is so sensitive. Over the past couple of years I have tried several times to introduce probiotics to her (before we knew lyme or yeast, etc), and she literally would herx with symptoms and feel worse. This is just from the probiotics, as she was taking nothing else. Anyone relate to this? Now with the nystatin and clay, she is tolerating the probiotics well.

 

From ped and GI specialist, she has had every test under the sun -- including celiac panels, parasites, giardia, etc. Nothing shows up. However, I would imagine that other more knowledgeable docs would use different labs & tests / different evaluation to make better determination of these possibilities. One doc is now treating her for yeast, and we are finally off to llmd next week now that we know lyme.

 

She was prescribed prevacid for acid refulx at some point, but I never felt comfortable giving it to her. Such a hard call, of course I wanted her to have relief, but then I felt it would also be difficult to determine the actual cause of her problem. Again, this was before we knew lyme. I have to say, I don't know if it's the clay or the nystatin -- or both -- but taking these 2 things has greatly improved the acid reflux situation to where she is barely complaining of it at this point.

 

Yes, I do believe that our whole family would all benefit from going GFCF. I have been saying/thinking this for a while now, and I just need to take the plunge! I am halfway there, but I know halfway doesn't count.

 

Otherwise, we keep a non-toxic house, and eat as organic / natural as possible. I have reduced EMF's as best I can (no wireless; no cordless, etc... I've seen the evidence of how it helps!). But I would like to inquire further about some of the devices some of you use.

 

I am interested in many of the things mentioned here, so I will put together my thoughts and ask back for more info. We LOVE our llmd for those of you who know who he is, but given his overwhelming practice he sticks with tradtional treatment. We have a great referall for a naturopath who will help us through the rest of this.

 

Michael, I have seen the info on Allergir Immun for some time now. It certainly looks interesting, but perhaps a little daunting at this point. Also, right now I am cautious of doing anything to detox metals without guidance. I have heard Dr. C say a couple of times (and she is relaying the advice of another who I can't remember right now) that you don't want to try and move metals too early in TBI treatment. I'm certain this is an issue with my daughter, but I just need to get some more educated advice about this. I'm glad it is helping you!

 

OK, my big question is this: I just wonder about not starting any abx until she gets her gut better, or the yeast under control. Is anyone's doctor advising this? Or what about the possibility of those darn parasites? Because I believe the K protocol says do this first ... is that right? I realize that the abx will will help the infection in the gut too, so I know there is that side of reasoning (and I'm sure that's where the LLMD is going to come down).

I have been at this lyme game for a while now, and my older daughter is doing great. But I feel like my younger daughter is a different case, much more multi-infectious in nature. That's just the way it feels to me.

 

Thanks again everybody! You've been really helpful.

[MichaelTampa]

I would not waste the effort with the ova and parasites test. If there is lyme, it is best to simply assume the parasites and worms are there. The tests are reputedly 10% accurate, meaning, if you have them, they will find them 10% of the time. I think the real number is probably something like 0.1% accurate.

 

Dr. K. does recommend doing that first, and I agree with that, particularly with gut issues, unless you need drastic improvement immediately. I've had diarrhea since March because of abx, and I really have started to get better now, after treating for parasites/worms (or at least starting this). At least for me, the things that we have all been blaming candida/fungus on, have finally improved with parasite/worm treatment. Starting out with abx really kills so much that it really lets the worms/parasites get a bigger stronghold, and that's why hitting them first can make the treatment so much better in the long term.

 

It is good to be careful with the heavy metals. I think a lot of the caution comes from people using substances to chelate, and it ends up just moving the metal around, because the body still does not recognize the metals as bad. So, the Allergie Immun approach is much safer than other methods, and an excellent place to start, once one is ready to deal with heavy metals. Still, I had quite the pimples and headaches, even using a variety of binders (cholestryamine, chlorella, ...). Regardless of method, it is important to use binders and be a bit careful when going with heavy metals.

 

The beginning of treatment, perhaps it makes sense not to do everything all at once, as it can be too much to handle. As all the bad things help each other stay there, I do think, towards the end of treatment, it's great to go after everything. But, yes, slow at first does make sense.

[PacificMama]

thank you Michael... this was helpful!

Mary

 

I would not waste the effort with the ova and parasites test. If there is lyme, it is best to simply assume the parasites and worms are there. The tests are reputedly 10% accurate, meaning, if you have them, they will find them 10% of the time. I think the real number is probably something like 0.1% accurate.

 

Dr. K. does recommend doing that first, and I agree with that, particularly with gut issues, unless you need drastic improvement immediately. I've had diarrhea since March because of abx, and I really have started to get better now, after treating for parasites/worms (or at least starting this). At least for me, the things that we have all been blaming candida/fungus on, have finally improved with parasite/worm treatment. Starting out with abx really kills so much that it really lets the worms/parasites get a bigger stronghold, and that's why hitting them first can make the treatment so much better in the long term.

 

It is good to be careful with the heavy metals. I think a lot of the caution comes from people using substances to chelate, and it ends up just moving the metal around, because the body still does not recognize the metals as bad. So, the Allergie Immun approach is much safer than other methods, and an excellent place to start, once one is ready to deal with heavy metals. Still, I had quite the pimples and headaches, even using a variety of binders (cholestryamine, chlorella, ...). Regardless of method, it is important to use binders and be a bit careful when going with heavy metals.

 

The beginning of treatment, perhaps it makes sense not to do everything all at once, as it can be too much to handle. As all the bad things help each other stay there, I do think, towards the end of treatment, it's great to go after everything. But, yes, slow at first does make sense.