Doxycycline and Cowden?

Hi there
I have almost identical infections as you have.
- Lyme
- Yersinia
- Chlamydia Pneumonia
- Coxsackie
- Cytomegalovirus
- Bartonella clinically diagnosed

I was tested by BCA lab, also in Augsburg.
I've had very loose stools from my infection, and antibiotics didn't make it better. I think it may be the yersinia. Anyway, you should take strong probiotics yes. I took 24 billion during treatment, but have now bought another brand with 102 billion per capsule. I take 3 every day.

I just started treatment again after a 6 week break. Unfortunately, I think you will need much more than 2-3 weeks of doxycycline. I've been treating 4 months, and are now starting up again.

Do you plan to do the doxycycline and cowden and then continue with cowden? I have told myself that if this round of antibiotics do not significantly improve my symptoms, I will start on Buhner.

Hi thislittlebluebird -

I'm so sorry you've been dealing with such difficult symptoms for so long. You sound like me - but many other members here have a very similar history.

First, I want to welcome you to the forum - we'll try to answer your questions as best as possible. There is a wealth of info and compassion here.

The good news is your testing has pinpointed problems--that can be years of exploration for people so that is helpful. I also think it is awesome that you found a functional MD - they are incredibly valuable. But you also likely need a Lyme specialist who can work with you both.

First step
We ask that all new members please review the "New to Lyme?" thread info at the top of the page - it has invaluable information about diagnosis, symptoms, treatment, etc. and will help you prepare for your first appointment.
www.healingwell.com/community/default.aspx?f=30&m=1606610

Please email Girlie, our head mod, and she can help you with contact info for LLMDs in your area to consider. You can find her email address in her profile. Or click here:
www.healingwell.com/community/profile.aspx?f=30&p=197951

I'm also a mod but not around as consistently but will help however I can.
​
​​Y​​ou can go to ​​The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:
​​www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74​

Y​ou can email ​the​ Tick-Borne Disease Alliance at​: [email protected]​

ILADS has their own referral system as well:
​​​ilads.org/ilads_media/physician-referral/

And www.LymeDoc.org

You will want to find an ILADS trained doctor, as ID Docs (Infectious Disease Doctors) as well as many others believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme--they adhere dogmatically to the IDSA and very narrow definition of Lyme and limited treatment. Go to the ILADS site to read the new (2014) Treatment guidelines to get you started on your healing journey: www.ilads.org/lyme/treatment-guideline.php

Lyme coaching
www.lymecoaching.com/#!schedule-a-call/c1gzt

Please don't hesitate to ask any questions that come up!

ID docs
ID docs are notoriously un-lyme-friendly. Nearly all follow the IDSA (ID Society of America) Guidelines for lyme, which has been horrifically negligent in effective diagnostics and treatment of lyme and coinfections. Millions of Americans either have no idea they have lyme because of uneducated MDs and poor etiology/testing, are currently misdiagnosed or are being mistreated, and many are suffering needlessly due to these archaic and dangerous guidelines.
SO... if your LLMD is an ILADS member, she might be one of the rare enlightened ID LLMDs - but would need much more of a view into her diagnostic and treatment approach, etc to determine that.

Second and third steps
One of the biggest advantages you can give yourself it to do two things before launching into an antimicrobial protocol to deal with the infections: a) heal your gut and b) improve immune function, and they are both interconnected since 70% of your immune system IS your GI. Anything you take orally runs the risk of improper absorption and that leads you down a long and expensive treatment road.

With GI issues, many people opt for IV abx or all-herbal protocols. My GI issues were so severe I spent a few months first healing GI. When I'd made enough progress I started an herbal protocol. After 6 months of cycling through various herbs for Lyme, I started losing the ability to walk and started on IV abx but I stayed on the herbs as well - most of us here are doing a hybrid abx-herb protocol. Some suggest the herbs take a little longer but I believe they are more comprehensive than abx. I could not tolerate some herbs I've taken so rely on the abx for that coverage. There are many options available to you.

But you will still need to advance through GI healing to make much progress, regardless of which protocol you choose.

Yeast/fungal overgrowth
These symptoms could be from various causes - many symptoms overlap so it's often tough to tell but starting by eliminating causes is the best approach. I suggest starting with determining if you have a possible yeast/fungal overgrowth - the IBS symptoms, brain fog, depression, anxiety, food intolerances, allergies could all be from GI imbalances caused by y/f overgrowth. I'd start with a review of this info on y/f overgrowth and a special note of the sx in case there are other sx you're not aware of.

Leaky gut
Y/f overgrowth and other imbalances can cause damage to the mucosal lining of your GI, which is where you absorb all your nutrients/supplementation/meds and also where 70% of the immune system lives--your literal security barrier to illness. If left untreated, some y/f evolve into a hyphae form that literally drills holes into the mucosal lining and fecal matter, toxins, undigested food and pathogens including y/f can seep through these holes and enter the blood stream. Your immune system recognizes this debris as "foreign" and starts to react to it, creating all of your food sensitivities, allergies.

Avoiding the grains, dairy, soy is a good start but with enough damage, your immune system will start to react to all the foods you eat. Healing from the damage can take awhile but can support any Lyme & Co treatment that follows in extraordinary ways - there is no miracle Lyme & Co tx that works without the support of your own immune system. And in order to remain healed from Lyme & Co after treatment, you'll need a continued strong immune function.

Here is more info on y/f overgrowth and leaky gut:
Y/FO post in the "New to Lyme?" thread:
www.healingwell.com/community/default.aspx?f=30&m=1606610&g=3644275#m3644275

Adrenals
The sleeping issues are likely an adrenal imbalance, which is VERY common w/ chronic conditions and Lyme & co and y/f overgrowth, as is thyroid dysfunction - they are both part of the HPA axis (hypothalmus, pituitary and adrenal). Read up on parasympathetic vs sympathetic nervous system and how adrenal depletion can exacerbate nearly all your symptoms. The functional doc can do a 5-sample 24hr saliva test for neurotransmitter function with a urine sample for cortisol levels - this will help her understand how the adrenals are keeping you going throughout the day.

Adrenal hormones kick in when we're under stress. If we were cavemen, this is handy when we're being chased by an animal we're hunting and psychological stress triggers a rush of hormones and chemicals that flood our body, shifting functions to redirect focused energy to increasing strength, stamina, endurance - this is where the "fight or flight" mode comes into play. This is how people develop super-human strength. But then the "emergency" should end, the body recovers by reshifting everything back to normal. The redistribution of the energy steals from systems like the immune functions, digestion, etc.

If you maintain high stress loads over long periods of time, like MOST people do because life is busy and stressful, but then add in a high pathogen load and the stress of symptoms and not getting diagnosed or treated, and fighting through the illness, and never allowing your adrenals to replenish themselves, then you become adrenal fatigued. Your functional doc can get you turned around.

I know you want to get this resolved and get back to school - but take it from me, you need to allow your body time to recover. The treatment isn't quick and there is nothing your body needs right now more than to rest so that it can recover.

Hope this is helpful - if not just keep asking questions!

-p

Girlie said...
Hi thislittlebluebird - welcome to our community.


Treating with abx won't ensure you heal quicker than if you'd treated herbally.

You could start with abx and give it some time...and then transition over to herbals.
But 14-30 days isn't really enough time to do much for a chronic infection.


We do encourage our new members to read through the information in the thread: "New To Lyme?..Start Here!"
It's packed full of useful information.

Do you have a LL Dr. to treat you?

I've had benefit twice from taking a 10 day Metronidazole course, it was prescribed to me after they could not figure anything else out (I had an endoscopy, gastroscopy, stomach ultrasound and stool sample, though the stool sample for parasites wasn't in a functional lab so I think it might have missed things). That antibiotic really saved my life then.

I just kind of feel "safer" taking the Doxy, since then I have done the recommended treatment for Lyme (even if it's probably too late for it to work by itself). I'm just kind of scared about getting these diagnosis and don't know who to trust about treatment. My two doctors have said completely different things, I've read a lot of scary things about if I don't go on antibiotics and a lot about what could go wrong if I do. The idea of going on antibiotics for months sounds like a bad one for me, and I don't think my body could handle it.

I just need to get my appetite back, stop loosing weight and feeling so exhausted :/ I don't have the energy to do anything fun anymore, I spent my birthday last weekend sleeping.

I do have a functional medicine doctor, she's really nice but not specialized in lyme. Basically she suggested the Cowden protocol for me but I'm worried that she didn't test me for Bartonella or Babisia and feel like she might not know this stuff super well. I live in Finland and the functional medicine doctors here are booked for months or don't take new patients atm. So I'm kind of on my own, the doctor will give me whatever I decide.

Oh and thank you for your detailed responses! It feels nice to be less alone with this, I'm kind of driving myself mad trying to understand all this.

Post Edited (thislittlebluebird) : 10/30/2017 12:37:01 PM (GMT-6)

Pirouette said...
Hi thislittlebluebird -

I'm so sorry you've been dealing with such difficult symptoms for so long. You sound like me - but many other members here have a very similar history.

First, I want to welcome you to the forum - we'll try to answer your questions as best as possible. There is a wealth of info and compassion here.

The good news is your testing has pinpointed problems--that can be years of exploration for people so that is helpful. I also think it is awesome that you found a functional MD - they are incredibly valuable. But you also likely need a Lyme specialist who can work with you both.

First step
We ask that all new members please review the "New to Lyme?" thread info at the top of the page - it has invaluable information about diagnosis, symptoms, treatment, etc. and will help you prepare for your first appointment.
www.healingwell.com/community/default.aspx?f=30&m=1606610

Please email Girlie, our head mod, and she can help you with contact info for LLMDs in your area to consider. You can find her email address in her profile. Or click here:
www.healingwell.com/community/profile.aspx?f=30&p=197951

I'm also a mod but not around as consistently but will help however I can.
​
​​Y​​ou can go to ​​The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:
​​www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74​

Y​ou can email ​the​ Tick-Borne Disease Alliance at​: [email protected]​

ILADS has their own referral system as well:
​​​ilads.org/ilads_media/physician-referral/

And www.LymeDoc.org

You will want to find an ILADS trained doctor, as ID Docs (Infectious Disease Doctors) as well as many others believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme--they adhere dogmatically to the IDSA and very narrow definition of Lyme and limited treatment. Go to the ILADS site to read the new (2014) Treatment guidelines to get you started on your healing journey: www.ilads.org/lyme/treatment-guideline.php

Lyme coaching
www.lymecoaching.com/#!schedule-a-call/c1gzt

Please don't hesitate to ask any questions that come up!

ID docs
ID docs are notoriously un-lyme-friendly. Nearly all follow the IDSA (ID Society of America) Guidelines for lyme, which has been horrifically negligent in effective diagnostics and treatment of lyme and coinfections. Millions of Americans either have no idea they have lyme because of uneducated MDs and poor etiology/testing, are currently misdiagnosed or are being mistreated, and many are suffering needlessly due to these archaic and dangerous guidelines.
SO... if your LLMD is an ILADS member, she might be one of the rare enlightened ID LLMDs - but would need much more of a view into her diagnostic and treatment approach, etc to determine that.

Second and third steps
One of the biggest advantages you can give yourself it to do two things before launching into an antimicrobial protocol to deal with the infections: a) heal your gut and b) improve immune function, and they are both interconnected since 70% of your immune system IS your GI. Anything you take orally runs the risk of improper absorption and that leads you down a long and expensive treatment road.

With GI issues, many people opt for IV abx or all-herbal protocols. My GI issues were so severe I spent a few months first healing GI. When I'd made enough progress I started an herbal protocol. After 6 months of cycling through various herbs for Lyme, I started losing the ability to walk and started on IV abx but I stayed on the herbs as well - most of us here are doing a hybrid abx-herb protocol. Some suggest the herbs take a little longer but I believe they are more comprehensive than abx. I could not tolerate some herbs I've taken so rely on the abx for that coverage. There are many options available to you.

But you will still need to advance through GI healing to make much progress, regardless of which protocol you choose.

Yeast/fungal overgrowth
These symptoms could be from various causes - many symptoms overlap so it's often tough to tell but starting by eliminating causes is the best approach. I suggest starting with determining if you have a possible yeast/fungal overgrowth - the IBS symptoms, brain fog, depression, anxiety, food intolerances, allergies could all be from GI imbalances caused by y/f overgrowth. I'd start with a review of this info on y/f overgrowth and a special note of the sx in case there are other sx you're not aware of.

Leaky gut
Y/f overgrowth and other imbalances can cause damage to the mucosal lining of your GI, which is where you absorb all your nutrients/supplementation/meds and also where 70% of the immune system lives--your literal security barrier to illness. If left untreated, some y/f evolve into a hyphae form that literally drills holes into the mucosal lining and fecal matter, toxins, undigested food and pathogens including y/f can seep through these holes and enter the blood stream. Your immune system recognizes this debris as "foreign" and starts to react to it, creating all of your food sensitivities, allergies.

Avoiding the grains, dairy, soy is a good start but with enough damage, your immune system will start to react to all the foods you eat. Healing from the damage can take awhile but can support any Lyme & Co treatment that follows in extraordinary ways - there is no miracle Lyme & Co tx that works without the support of your own immune system. And in order to remain healed from Lyme & Co after treatment, you'll need a continued strong immune function.

Here is more info on y/f overgrowth and leaky gut:
Y/FO post in the "New to Lyme?" thread:
www.healingwell.com/community/default.aspx?f=30&m=1606610&g=3644275#m3644275

Adrenals
The sleeping issues are likely an adrenal imbalance, which is VERY common w/ chronic conditions and Lyme & co and y/f overgrowth, as is thyroid dysfunction - they are both part of the HPA axis (hypothalmus, pituitary and adrenal). Read up on parasympathetic vs sympathetic nervous system and how adrenal depletion can exacerbate nearly all your symptoms. The functional doc can do a 5-sample 24hr saliva test for neurotransmitter function with a urine sample for cortisol levels - this will help her understand how the adrenals are keeping you going throughout the day.

Adrenal hormones kick in when we're under stress. If we were cavemen, this is handy when we're being chased by an animal we're hunting and psychological stress triggers a rush of hormones and chemicals that flood our body, shifting functions to redirect focused energy to increasing strength, stamina, endurance - this is where the "fight or flight" mode comes into play. This is how people develop super-human strength. But then the "emergency" should end, the body recovers by reshifting everything back to normal. The redistribution of the energy steals from systems like the immune functions, digestion, etc.

If you maintain high stress loads over long periods of time, like MOST people do because life is busy and stressful, but then add in a high pathogen load and the stress of symptoms and not getting diagnosed or treated, and fighting through the illness, and never allowing your adrenals to replenish themselves, then you become adrenal fatigued. Your functional doc can get you turned around.

I know you want to get this resolved and get back to school - but take it from me, you need to allow your body time to recover. The treatment isn't quick and there is nothing your body needs right now more than to rest so that it can recover.

Hope this is helpful - if not just keep asking questions!

-p

Thank you for your response, I will try and take it all in and study more about these topics!

You said you couldn't walk with the herbal protocol? Why was this?

I'm eating super clean paleo/organic/autoimmune and taking enzymes to break down the food + supplements to get the proper nutrients that I got from my functional doctor,taking strong probiotics, going to a sauna daily, drinking lots of tea (mint, green, ginger) and trying to be as stress free as I can? Is there something else I can do to help my body before starting treatment?

Should I tackle the candida before the other stuff? I've treated candida once before a few years ago through a functional doctor, and it did help a bit, but most of my symptoms were still there. Currently I feel like candida is kind of "the least of my problems" with all the other stuff that is happening.

Post Edited (thislittlebluebird) : 10/30/2017 1:01:20 PM (GMT-6)

Pirouette said...
thislittlebird -

I started on various herbal protocols for Lyme, bart and babs. I tried several different herbs for Lyme and none made me herx nor was there any improvement in sx - in fact they worsened. I'm not sure why. I was very reactive to other herbs I took for bart and babs - both in good ways and Byron White A-bart triggered GI attacks so severe that I ended up in the ER.

Once I started on the IV Rocephin for Lyme, the hip and knee joint pain and weakness and inflammation subsided and coordination slowly returned and I was able to walk pain-free. Although complete resolution took quite a long time.

Unfortunately, it's most helpful to try various protocols out before you'll know how you respond.

YES - it is very important to get yeast/fungal overgrowth under control before moving forward with Lyme & Co treatment. They all create overlapping symptoms and it's almost impossible to navigate Lyme & Co treatment if you are constantly trying to figure out what is what - eliminating the y/f issues from the picture can simply this and also make your treatment more effective and possibly, go faster.

Also, untreated y/f overgrowth can damage the mucosal lining of the GI and that can make it difficult to properly absorb your treatment and weakens your immune system and burdens it with y/f and it doesn't need more to deal with.

-p

Could I possibly mix the candida protocol with the doxy and then add on the herbs after the antibiotic is done? I'm not sure if there is a point for me to even go on doxy for the 2 weeks, but I feel like I want to give it a go. Would it be a terrible idea to start doxy, the candida cleanse and the cowden herbs at the same time? I don't care how bad they make me feel if I could just get better faster in the long run. I understand that this will likely take long before all of my symptoms and things clear out, but realistically I need to be able to function okay in a few months. I can't keep my life on hold much longer or I will fail my degree.

Pirouette said...
Sorry -
also meant to add that you could do a lot more to detox - be sure to cover all the various categories - most people struggling with Lyme & Co and yeast/fungal overgrowth have issues naturally detoxing so we need all the help we can get:

skin - it's our largest detox organ - the sauna is good, try soaks with epsom salt, sea salt, hydrogen peroxide, your favorite essential oil

GI - help remove toxins with a GI binder like bentonite clay, activated charcoal, modified citrus pectin - the binders can also help prevent things from growing out of balance in the GI and can help promote more regular bowel movements - the toxins in the Gi can also travel to the brain through the connecting blood vessels (the gut-brain connection) so it's critical to get these out of your body every day

brain - Nutramedix Pinella and Burbur are two tinctures many of us here are taking to help brain detox

lymph - taking red root, dry brushing and lymph massages all help keep circulation moving and help lymphs (the body's gunk filter) drain and keep toxins moving in the right direction and out of the body.

liver - Certainly with pharmaceutical drugs but even with high loads of antimicrobial herbals and antifungals many of us are on can overtax the liver and kidneys - many of us here are taking milk thistle seed or burdock root.

****

I know you're anxious to get back to work, back to life, back to normal. I think everyone here knows exactly how that feels. But I guarantee you, with a little tough love, it's probably not going to happen like you want it to, nor as quickly.

If you follow the sequence I'm suggesting, you'll have a better chance for a quicker recovery. I been there, did it wrong, then did it right. My 18 mos. treatment turned into 4 yrs. You're going to do this much quicker, I assure you, but it's not likely it'll get wrapped up in 3 months. Quite a few members here can attest to a particular sequence and a slow start and a steady increase in treatment intensity... vs the alternative which is usually a guaranteed fail.

If you do this right, you might be able to get back to work while you're still treating... If, if if...

Your body is not a machine. You're already sick and struggling or you wouldn't be feeling so awful, putting your life on hold, dealing with symptoms and looking for help. Your body is trying to communicate to you - allow it to guide you. If you take care of the easy stuff first and clear away the noise so the body's messages to you are easier to understand and react to, get into a more comprehensive detox protocol and gear up for Lyme & Co treatment the right way, you'll be here a shorter period of time.

Now is the hour of truth and the decisions you make right now will determine your success moving forward - it is that critical.

Again, I would not introduce antibiotics on top of a yeast/fungal overgrowth if you don't have to. It's only going to make the situation worse and again, if you have GI damage from the y/f the abx are going to be less effective.

You can start it all at the same time and you can be hit with a whirlwind of "herxing" symptoms, which is like sepsis that the antimicrobial process creates when it kills a lot of stuff and it takes awhile for it to move out of your body and the body starts reacting to the toxins.

The yeast/fungal die off can sometimes be very intense at first - worse than the symptoms are - and these sx are often the same sx as herxing from killing the Lyme & co. It's very confusing and overwhelming for the body... some people react so severely they have to slow down or stop treatment.

None of this is about willpower - your body will laugh in your face when it gets overwhelmed at step 1 or 2 with its inability to manage everything at once and a serious herx storm can cause more problems, an even weaker immune system, you'll delve even deeper into illness and delay treatment even longer and then it will shut down. Been there.

-p

Thanks so much for your response! It's very comforting to know I'm not the only one with these issues and that there is a light at the end of the tunnel hopefully...

I just got the results from my Genova Diagnostics GI Lab back, my main issues are e.coli (I have taken Coptis drops and strong probiotics before to cure this as prescribed by my functional medicine doctor but it's still there), high zonulin (points to leaky gut), inflammation (high Fecal secretory IgA), gut imbalances including high PP Yeast/Fungi, low n-Butyrate and low Total SCFA. No parasites were found to my surprise.

What do you suggest is the best way for me to go about this? I know you cannot give medical advice based on a chat forum on the internet, but I'm seeing my doctor again next week and I'd love to have another opinion on top of that to consider my options.

IBS symptoms, brain fog and fatigue are my biggest issues and I'd love to get them under control before January when I start college again. I'm willing to do whatever it takes to get better in the long term, but I would love some "quick fix" tips over the next few months so I could get my life back slowly.

For detox, how much milk thistle would you suggest? I already take a 150 mg capsule from my nature food store every day. I use bentonite clay face masks and do saunas and drink tons of fluids. I stopped using antiperspirant deodorants and try to get some exercise in (even though I am exhausted these days) to sweat out toxins.

Is there more I could do to take care of my gut? I take tons of good probiotics, eat autoimmune/paleo/organic foods as much as I can and take L-glutamine to help my stomach lining.

Pirouette said...
You are DEFINITELY not alone - it's really great that you're posting questions.

I saw your other post about constant "allergies" and I was just getting ready to post some thoughts about that. I'll also share here for others who are reading.

First, I think it's so great that you have some solid testing results to go on - those tests can often not pick up anything, which makes diagnosing so much harder.

Personally, I believe many of the "allergies" symptoms are actually indicators that your immune function is struggling. Your immune system is producing inflammation and discharge (sinus drainage, runny nose, phlegm/sputum/mucus) to try to "punt" bacteria and whatever else (yeast/fungus/biofilm?) out of your tissues. It's a cool mechanism but shouldn't be ongoing. It's better than no immune response, however.

I think the whole "allergy" industry and all the meds people use interfere with this process - in some situations. For me, I had a Mycoplasma pneumonia relapse back in Dec/Jan and took all sorts of expectorants and antihistamines and whatever else trying to affect the sx but it dragged on for several weeks. I got hit with the M pn again two wks ago and I'm almost already over it. This time - I took nothing. This is far from a scientific experiment but in my case I think it means that my immune system is stronger/less burdened and my GI health is just that much better (I've been working on it a long time).

So, that goes back to you getting your GI issues resolved, increasing healing and optimizing GI health, improving immune function and I'll bet you anything, your "allergies" are reduced. It's entirely possible there are other issues going on but the GI is where I'd start, since 70% of the immune system is in your GI and leaky gut can disrupt so much of the immune process and trigger a lot of autoimmune craziness that makes everything so much more complicated and confusing, and more difficult to treat.

This is oversimplified but what I would do if I were you is to break down and rebuild a different protocol - since the one you have isn't working as well as it should:

- Stop taking the abx (as mentioned), but also the probiotics and L-Glutamine

- Try aloe vera juice to soothe and heal the mucosal lining. Look for other "healing" products online and try them (one that comes to mind that I've never tried is colostrum). Add in one thing at a time at least a few days apart and take a note of when and what changes are made to your protocol on a calendar.

- simplify your diet even more - eliminate ALL sugars (no fruit even), all processed foods, all grains, all dairy and stick to mainly veggies and complex carbs, ---as organic and GMO-free as you can get. In healing the damage, it might be good to do an all-liquid diet, pureed veggies and bone broths and veggies broths - say for the first 3-4 wks (it's not easy). I had the best luck with baby food for a few weeks - a lot of variety, no wasted meals, portable, convenient - very little prep but the organic stuff is a little expensive. As the weeks go by, and as long as you feel some improvement, you can incorporate more solid foods, healthy animal proteins but wait at least a couple months to incorporate any grains or sugars.

You mentioned you're already on a paleo diet so if you're still having GI problems w/ a clean diet the fix might be a little more complicated. You really need to study the food sensitivities that you can learn from a stool test like Doctor's Data to understand what your exact list of avoidance foods should be. I'd start there plus the list above, which it sounds like you already follow. The leaky gut diet generally isn't long-term but you might need to make some serious changes for the next 6 months.

- incorporate other healing foods like chicken and beef bone broths are critical to healing and delivering key nutrition.

- Try small portions - like a third the size of a full meal but eat every 2-3 hours... keep the nutrition coming but don't overwhelm the GI with a big meal all at once.

- and the GI binders are very, very important. Almost all the GI detox I'm recommending is to be ingested - including the bentonite clay (make sure you have food-grade). Detoxing your face might help with skin issues but isn't going to help your GI as much as you need it to. Start VERY slowly and carefully with a GI detoxer - based on your tests you have a lot of infection and my guess is you probably have some of this going on in your GI. The right dose of binder will help clean some of this up.

- you need to be very, very regular with your bowel movements - you need to make sure you are eliminating a couple times a day to remove the toxins and debris causing the GI issues. An optimal dose of the GI binder could be the key to this but if not, you might need to incorporate some natural laxatives like tart cherry juice and others.

- you also need to be sure your pancreas is signaling to your stomach to produce enough gastric acids - these are essential for digestion but also help manage overgrowth of bacteria and other pathogens. One way to do this is to try taking HCL w/ pepsin with meals - if your body is producing enough acids, you'll have acid reflux with just a small amount of HCL. If not, you continue increasing HCL dose over a few days until you do have a reaction and often, this jump starts a proper amount of natural production with each meal.

- antifungals are important, as discussed.

Healing the GI can take a long time if there is significant damage. And it's difficult because you have to make very critical diet decisions all day long and this gets old. BUT THERE IS NO OTHER WAY TO HEAL THE GI and eliminate the related symptoms. If gastroenterologist would admit this to their patients and refer them to a nutritionist, they would be out of a job. Most MDs get one or two nutrition courses in 8+ yrs of schooling...

After you have made progress healing GI - or as much as you can, you might need to also address the several pathogens you were just diagnosed with in order to get your GI to another level of healing... so that's another stage.

Take one step at a time... and keep asking questions if you run into trouble. Many people have healed their GIs and done it differently - there's a lot of good info on the web.

-p

Thank you yet again for your response

Should I really stop taking probiotics and L-Glutamine? I feel that those are the only things that are keeping my gut health kind of under control atm.

I agree that my allergies are related to my gut, it would make sense. I kind of feel like my body has just been breaking down slowly over the years. I'm feeling slightly better currently (better than in months) due to starting to make health smoothies (with collagen, l-glutamine, chia seeds, maca, almonds, berries, greens etc.) and take better digestive enzymes with all my meals.

I haven't started the antibiotics yet, but I'm feeling uncertain about the Cowden protocol. It's 250e a month and I'm wondering if it will really even work for me :/ If I have to be on it for at least 4 months that will be a 1000e spent on herbs that I don't really even understand and the science behind their effectiveness is not solid. I'm also not fully convinced about the tests and that I have Lyme and other things, or if those are what are causing my health issues. I'm kind of questioning everything.

What protocol did you use to fix your symptoms and how long did it take for you to notice that it was working?

What would you say were the top 3 things you did overall throughout your 4 years of healing that made the biggest difference?

I'm just feeling confused and overwhelmed with all the things I need to do to maintain my health, I'm not really sure if these things are working or if I'm just feeling better as a coincidence. I'm trying to follow all the instructions to heal my gut and detox before starting some kind of herb protocol etc. in a few weeks.

Pirouette said...
I might have misunderstood your previous posts - I thought you implied what you were currently doing wasn't working. If you're not comfortable stopping what you're doing - don't. Trust your instincts.

However, probiotics are known to be problematic for some and it might be beneficial to stop and restart with another product.

And you will likely need to do more to help your GI heal, hence the other suggestions I made.

You're asking all the right questions and your hesitation is common. This is such a maze and most people are not accustomed to--or prepared to take on so much of these medical issues themselves. Unfortunately, it's necessary and you can do it. Just take things one at a time.

The learning curve with herbal and alternative protocols is one of the things that makes them difficult to undertake - especially on our own and this is often why people do abx at first. You have some time to make the decision about Cowden since it's probably a good idea to get your GI health in better shape, which will take a little time. We've had some good discussions on the forum about Cowden - there are also other protocols although they are probably not a lot cheaper.

What makes you question your Lyme dx? I'm not real familiar with Armesin labs but in the US, false positives are very rare. Add a positive test to exposure and symptoms, it's tough to question a dx.

However, my opinion is that since there is so much organized and systemic disinfo about Lyme and transmission that has lead to an epidemic, MOST people carry the Lyme microbe in their bodies but not everyone is symptomatic. Many people remain asymptomatic ---until some trauma (physical or physiological or psychological) creates a lot of stress, which weakens the immune system and then things start breaking down in their bodies, opportunistic pathogens (like Lyme & Co, yeast/fungus, etc) start emerging and dominating immune function...

So - focus on what you're doing - healing GI, addressing "allergies", improving the neuro-psych issues and balancing neurotransmitters, etc... and then re-evaluate your sx. I guarantee you, they will look MUCH simpler and you will be able to determine what infections to treat much more easily.

Take this questionnaire to start with - and then use it to guage your progress and this will help you decide what herbal protocol to implement:
Jernigan's symptom list:
www.healingwell.com/community/default.aspx?f=30&m=3673749&g=3673789#m3673789

-p

"What protocol did you use to fix your symptoms and how long did it take for you to notice that it was working?

What would you say were the top 3 things you did overall throughout your 4 years of healing that made the biggest difference?"

I really appreciate that you have taken the time to respond to my silly questions, it's amazing to get this kind of help and support from an online forum! Otherwise I'm just stuck waiting for my next doctors appointment and trying to scan through every lyme/functional medicine source I can by myself and trying to make sense of it :p

What you say about many people carrying the Lyme bacteria and it only becoming "active" when other things go bad makes sense to me. I can have periods where I feel pretty good for a while and then suddenly I start to feel ill again. When I'm feeling better I just want to be in denial and act like it'll always stay like that, when it hasn't for years and years. This fall I finally decided to get to the root cause since I can't be living a life of relapsing illness that keep ruining my life.

Do you think going on the antibiotic (along with strong probiotics and all the gut healing things) would be catastrophic? So far antibiotics (Flagyl) has been the most life changing thing for me and has saved my life several times. I'm eager to try doxy for a few weeks along with the herbs to just be able to say I've done the "standard" lyme treatment. I think I will have to give the Cowden a go, if I don't notice any difference or herx symptoms in the first few months I'll need to look into other options then I think.