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Posted 7/23/2014 2:32 AM (GMT 0)
Hello all!

I've been experiencing some cognitive problems that took about 4 years to peak and that I've been living with for about 7 years total (so 3 at plateau). I've been searching for answers through the medical route for about 2 years. For a while I thought it was all psychological. For the last year I've been trying to treat it like it was this very specific schizophrenic like cognition problem (which on the ILADS.org site even mentions that it can be misdiagnosed as this). I didn't exhibit the "positive" symptoms such as delusions/hallucinations but I did suffer from what is referred to as the "negative/cognitive" symptoms. You can read about that journeyhere if you'd like more detail.

After about 7 months of trying all the traditional treatments for this that should have worked for that condition I began to question whether or not I have that. As a lot of you have probably come to find, doctors can be less than useless in these obscure diagnoses and like many others in these situations I took matters into my own hands. For a while I was clueless on what it could be but after many many hours surfing the internet I came to a unique perspective on Lyme disease that I hadn't seen before and thought that maybe this could be my problem.

Every single (yes, every one) cognitive symptom on that list I have (memory, spaciness, brain fog, speech/language problems etc.). While it becomes immediately obvious that I do not respond to Lyme disease in a typical way (such as the soreness, extreme fatigue (I do have chronic mild fatigue), achy joints) I have a hard time ruling it out totally. I just do not know what else it could be and after the SZ this is the closest thing I can find; and also the supplements that I most highly respond to are in fact anti-microbial, being Ashwagandha and Lion's Mane. They don't do a whole lot for me but NOTHING else has helped. If you check my thread I linked you'll see the journey I've been on. I also experience sleep disturbances and smell distortion.

Now the obvious response is to go get tested and once I figure out the money situation I definitely will. It looks like the IGeneX test can be expensive and I haven't visited my doctor to figure out if we could work something out. I believe my insurance works along the lines of only providing up to $100 per lab test/visit, so I want to try and space these out if they're separate tests (ridiculous insurance I know). The most ironic and cruel thing about this is that I have an LLMD a mile away from my house (insane) but the initial consultation costs on average $400 and I just don't have that kind of money and neither does my family.

So I guess I really just want to know if this sounds even remotely close to Lyme disease from those who have experienced it and have been confirmed infected. I've a hard to enjoying much of life because of all this so this is kind of what I do, go online and figure things out smile so apologies if this comes off as impatient, I know tests are necessary.

I plan on going to my doctors ASAP and seeing what they have to say, if their tests are cheap enough to be covered by my insurance I may just try those first and see if anything hits before getting into the IGeneX stuff.

If you've made it this far, thank you for your time!

AE
Posted 7/23/2014 2:50 AM (GMT 0)
I have all the cognitive symptoms as well but also have muscle pain all over and joint paint. I do have Lyme with coinfection, Bartonella though. Maybe there's someone with just Lyme that has experienced what you describe. I think though that most people do get some kind of pain or tingling with Lyme especially if they've had it for as long as you have your symptoms. Testing with Igenex or even a culture test is a good idea as some Drs. might dismiss your symptoms. I really hope you can find a way to get some answers!
Posted 7/23/2014 2:08 PM (GMT 0)
Hi AlmostEasy,
Welcome to our community!

I believe Bartonella is more known for the serious psychological issues, although Lyme can most certainly be responsible as well - and combined, they can really do a number on a person sometimes.

I too had serious cognitive issues and some psychological issues, but with detoxing and treatment for Lyme and Bartonella, they have resolved. I believe that you are wise to check out this possibility rather than just trying out different meds.

You should know though, that the tests for these infections are not that reliable. They rely on an immune response, and Lyme and Bartonella (especially when both are present) will reduce the immune response. So we wind up counting on something happening that likely won't. I didn't test positive for any tick-borne infections until I had already gone through a full year of antibiotic treatments.

It would be much more productive for you to go through our "New to Lyme? Start here!" thread that sits at the top of this forum and take a look at all the symptom lists. See how many you have and then find a Lyme literate doctor to help evaluate you clinically. A good LLMD (Lyme Literate Medical Doctor) will not rely on tests, although they could back up a clinical diagnosis.

Or, once you have read through the "New to Lyme?" thread, and you believe that the symptoms all fit, you can try one of the natural protocols and see if you improve.

You will need to see a doctor that is truly Lyme literate though - regular doctor don't have a clue about these infections unless they have started training from ILADS (International Lyme and Associated Diseases Society), as there is much misinformation out there.
Posted 7/23/2014 5:08 PM (GMT 0)
Almost Easy -

I can empathize with your story. I too had memory, spaciness, fatigue (would come and go), brain fog for several years - not to mention, panic attacks and unrelenting anxiety to make it a real party! Two psychologists later and countless tests clearing me of any kind of emotional or mental issues, I finally resorted to getting tested for lyme. I tested positive with ELISA/Western Blot and the rest is history. My LLMD mentioned to me at my last appt that many misdiagnosed lyme patients wrongfully end up in psych wards or put on anti-psychotic meds (so sad!). If you treat the lyme, the symptoms go away --Im living proof! The symptoms you mentioned took several months to clear on the meds and Cowden Protocol (neuro symptoms can be stubborn to resolve), but once they did I felt like a new person :) It sounds like you may just be on the right path to reclaiming your life again.
Posted 7/24/2014 12:26 AM (GMT 0)
I think this is a very interesting topic, and bears further info. I'd say for me it's a toss up between neural, fatigue, pain, and well, actually, a host of other problems, come to think of it! I used to think I had early dementia, and sometimes I get hyper and have a racing mind.

:-)

Margaret
Posted 7/24/2014 1:42 AM (GMT 0)
Thank you all for the warm responses, this community has a lot of love! I haven't found much of this elsewhere.

I have an appointment with my doctor on Monday for some immunization stuff for school but while I'm there I'm going to bring up the subject and see what kind of tests they can run and if insurance covers theirs I'm just going to try it out and see if anything hits.

So that's the game plan for now, if nothing hits on those tests (which I don't really expect them to but if it's free it's free) I'll consider further options.

lymebytes said...
Almost Easy -

I can empathize with your story. I too had memory, spaciness, fatigue (would come and go), brain fog for several years - not to mention, panic attacks and unrelenting anxiety to make it a real party! Two psychologists later and countless tests clearing me of any kind of emotional or mental issues, I finally resorted to getting tested for lyme. I tested positive with ELISA/Western Blot and the rest is history. My LLMD mentioned to me at my last appt that many misdiagnosed lyme patients wrongfully end up in psych wards or put on anti-psychotic meds (so sad!). If you treat the lyme, the symptoms go away --Im living proof! The symptoms you mentioned took several months to clear on the meds and Cowden Protocol (neuro symptoms can be stubborn to resolve), but once they did I felt like a new person :) It sounds like you may just be on the right path to reclaiming your life again.

That's pretty unfortunate someone would be put on APs unnecessarily. They are a very scary thing that are meant for people in desperate situations only. Just recently they found that they themselves cause brain atrophy. Yikes.

I've about 6 months until school starts so I'm really pushing hard to find even slight relief. I can still do it now if I had to but it would not be pretty.

Thanks for the encouragement!

Also which meds/herbals did you find helped clear the neuro's the most? Was Pinella significant? Combo of everything?

Traveler said...
Hi AlmostEasy,
Welcome to our community!

I believe Bartonella is more known for the serious psychological issues, although Lyme can most certainly be responsible as well - and combined, they can really do a number on a person sometimes.

I too had serious cognitive issues and some psychological issues, but with detoxing and treatment for Lyme and Bartonella, they have resolved. I believe that you are wise to check out this possibility rather than just trying out different meds.

You should know though, that the tests for these infections are not that reliable. They rely on an immune response, and Lyme and Bartonella (especially when both are present) will reduce the immune response. So we wind up counting on something happening that likely won't. I didn't test positive for any tick-borne infections until I had already gone through a full year of antibiotic treatments.

It would be much more productive for you to go through our "New to Lyme? Start here!" thread that sits at the top of this forum and take a look at all the symptom lists. See how many you have and then find a Lyme literate doctor to help evaluate you clinically. A good LLMD (Lyme Literate Medical Doctor) will not rely on tests, although they could back up a clinical diagnosis.

Or, once you have read through the "New to Lyme?" thread, and you believe that the symptoms all fit, you can try one of the natural protocols and see if you improve.

You will need to see a doctor that is truly Lyme literate though - regular doctor don't have a clue about these infections unless they have started training from ILADS (International Lyme and Associated Diseases Society), as there is much misinformation out there.

Thanks for the reply Traveler!

What were your cognitive problems like (If you don't mind talking about them, I'm pretty immune to it now after so much discussion :-)) ? Were they enough so that your ability to converse was significantly altered? I find that if it gets to that point they're pretty severe, which is about where I am. Typing I'm fine but conversation can be brutal. My working memory is just awful.

Also if you were to recommend one of the herbals for treating this, say as a type of diagnostic test on its own what do you think you would suggest? I was considering just buying one bottle of something to see if I get any type of reaction from it, my other slight anti microbials help so I'm assuming a powerful one might do wonders. Samento? Banderol? Pinella even? According to the Cowden Protocol the Pinella is used to remove toxics and the like from the CNS/Brain etc. And just to iterate I'm aware this isn't a reliable indication of much in terms of an honest diagnosis but I'd like to test my theory out.

teragram said...
I think this is a very interesting topic, and bears further info. I'd say for me it's a toss up between neural, fatigue, pain, and well, actually, a host of other problems, come to think of it! I used to think I had early dementia, and sometimes I get hyper and have a racing mind.

:-)

Margaret

cry That's no good! So you fixed your problems with treatment then?

Thanks for the replies all!

Cheers
Posted 7/24/2014 3:35 AM (GMT 0)
AlmostEasy:
I couldn't afford much in testing, either. If you get the Igenex Western Blot - it's $200. (I had to pay additional $75 for Fedex from Canada to CA, USA - not sure what your Fedex charge would be)

Just wanted to let you know that some of us don't get the full Lyme panel of tests...and the "best bang for your buck" is the Western blot.

Good luck!
Posted 7/24/2014 4:05 PM (GMT 0)
"Thanks for the reply Traveler!

What were your cognitive problems like (If you don't mind talking about them, I'm pretty immune to it now after so much discussion :-)) ? Were they enough so that your ability to converse was significantly altered? I find that if it gets to that point they're pretty severe, which is about where I am. Typing I'm fine but conversation can be brutal. My working memory is just awful.

Also if you were to recommend one of the herbals for treating this, say as a type of diagnostic test on its own what do you think you would suggest? I was considering just buying one bottle of something to see if I get any type of reaction from it, my other slight anti microbials help so I'm assuming a powerful one might do wonders. Samento? Banderol? Pinella even? According to the Cowden Protocol the Pinella is used to remove toxics and the like from the CNS/Brain etc. And just to iterate I'm aware this isn't a reliable indication of much in terms of an honest diagnosis but I'd like to test my theory out."
-----------------------------------------------------------------------------------------------------

You're very welcome!! I'm glad you chose to join us! I agree that there is a lot of love/community feeling on this forum!! And thank you for saying so! We really like it that way! :-)

You should probably know that I used abx for Lyme only for 1 year first. It only made me much worse. I took time to learn how to detox well, found a Traditional Chinese Medicine/Acupuncture/Western Herbalist that agreed to treat me, and found the treatments that worked for me.

Yes, my cognitive issues were pretty severe after the use of abx. At my worst, I:
*Had no working memory (short or long term)
*Couldn't follow patterns (like putting together shish-ka-bobs)
*Couldn't follow written or oral instructions
*Had significant word finding difficulties
*Hallucinations -visual, auditory, olfactory
*no math capabilities
*issues with facial recognition (goes back to memory issues)
*my husband had to actually tell me what I had to do each day (laundry, grocery shopping [which actually caused a lot of anxiety], pay rent, walk the dogs or whatever needed to be done.)
*and all the other cognitive symptoms listed in the "New to Lyme?" thread under the Master symptom list for Lyme disease, including the seizures and the Lyme seizures where the whole body starts to shake/vibrate visibly.

Each person is so different, it's hard to pick just one thing that would most likely help an individual without trial and error. I used an herbal combination that not many others have used and even less seem to have success with - but it worked extremely well for me! I was given the estimate of 10 - 15 years in treatment for Lyme disease alone, yet once I went to herbal treatments I was only in treatment for Lyme for 1 year - yet have had no active symptoms since stopping treatment at the end of Dec 2010!! turn Woo hoooooo!!! LOL!

I can tell you that I believe that most of the cognitive issues are due to ammonia in the brain (especially in my case), as even before I started herbal treatment for Lyme disease (1st tick-borne infection I treated), I was able to reduce those symptoms significantly with tons of detoxing and getting my diet to a good place.

I also did my best to make it so that I wouldn't be adding more toxins to my body by switching to only deodorant, switching from lotions to coconut oil only, using baking soda for washing my hair and coconut oil when it needed conditioner.

I did everything I could afford to do to detox - green smoothies, raw goat milk kefir(I made my own), Epsom salt/peroxide detox soaks, dry skin brushing, putting myself in situations so that I would sweat (I had to be careful as I lost the ability to regulate my body temperature for a while due to adrenal issues I believe). I also used activated charcoal - but this was also back in 2009/2010 - there was actually quite a bit less known about how Lyme bacteria and Lyme toxins responded to natural treatments.

What I find very interesting is that there is very little information on the type of Pinella that Cowden developed - other than what Cowden provides. I'm not sure what all that means, but I do find it interesting.
Posted 7/25/2014 12:31 AM (GMT 0)
Its hard to say for sure which ones helped the most, I think all of them played an important role. I will tell you that I added in "mapalo" brain support around month 3 and saw a big difference. that one is not included in the standard protocol, you have to purchase in addition. My brain fog and mental sharpness was noticeable with that and very soon after starting it!

Also "amantilla" for anxiety and "ezov" for emotional support were helpful. All of these nutramedix herbs I mentioned can be found on amazon.

Post Edited (lymebytes) : 7/24/2014 6:34:07 PM (GMT-6)

Posted 7/25/2014 6:13 AM (GMT 0)

Girlie said...
AlmostEasy:
I couldn't afford much in testing, either. If you get the Igenex Western Blot - it's $200. (I had to pay additional $75 for Fedex from Canada to CA, USA - not sure what your Fedex charge would be)

Just wanted to let you know that some of us don't get the full Lyme panel of tests...and the "best bang for your buck" is the Western blot.

Good luck!

Hey that's good to know. The IGeneX site is a bit confusing I haven't quite taken to time to figure out how all that works. Once I have a chat with my doctor I'll better know what route I'll be taking but that's good to hear, that's affordable.

Actually, should I tell my doctor anything about it? Like do I have them contact my doctor or..? It looks like they don't take insurance either so it's all up front? (Last question!) Also did you do the IgG or IgM blot?

Lol ok that's all!

Traveler said...
"Thanks for the reply Traveler!

What were your cognitive problems like (If you don't mind talking about them, I'm pretty immune to it now after so much discussion :-)) ? Were they enough so that your ability to converse was significantly altered? I find that if it gets to that point they're pretty severe, which is about where I am. Typing I'm fine but conversation can be brutal. My working memory is just awful.

Also if you were to recommend one of the herbals for treating this, say as a type of diagnostic test on its own what do you think you would suggest? I was considering just buying one bottle of something to see if I get any type of reaction from it, my other slight anti microbials help so I'm assuming a powerful one might do wonders. Samento? Banderol? Pinella even? According to the Cowden Protocol the Pinella is used to remove toxics and the like from the CNS/Brain etc. And just to iterate I'm aware this isn't a reliable indication of much in terms of an honest diagnosis but I'd like to test my theory out."
-----------------------------------------------------------------------------------------------------

You're very welcome!! I'm glad you chose to join us! I agree that there is a lot of love/community feeling on this forum!! And thank you for saying so! We really like it that way! :-)

You should probably know that I used abx for Lyme only for 1 year first. It only made me much worse. I took time to learn how to detox well, found a Traditional Chinese Medicine/Acupuncture/Western Herbalist that agreed to treat me, and found the treatments that worked for me.

Yes, my cognitive issues were pretty severe after the use of abx. At my worst, I:
*Had no working memory (short or long term)
*Couldn't follow patterns (like putting together shish-ka-bobs)
*Couldn't follow written or oral instructions
*Had significant word finding difficulties
*Hallucinations -visual, auditory, olfactory
*no math capabilities
*issues with facial recognition (goes back to memory issues)
*my husband had to actually tell me what I had to do each day (laundry, grocery shopping [which actually caused a lot of anxiety], pay rent, walk the dogs or whatever needed to be done.)
*and all the other cognitive symptoms listed in the "New to Lyme?" thread under the Master symptom list for Lyme disease, including the seizures and the Lyme seizures where the whole body starts to shake/vibrate visibly.

Each person is so different, it's hard to pick just one thing that would most likely help an individual without trial and error. I used an herbal combination that not many others have used and even less seem to have success with - but it worked extremely well for me! I was given the estimate of 10 - 15 years in treatment for Lyme disease alone, yet once I went to herbal treatments I was only in treatment for Lyme for 1 year - yet have had no active symptoms since stopping treatment at the end of Dec 2010!! turn Woo hoooooo!!! LOL!

I can tell you that I believe that most of the cognitive issues are due to ammonia in the brain (especially in my case), as even before I started herbal treatment for Lyme disease (1st tick-borne infection I treated), I was able to reduce those symptoms significantly with tons of detoxing and getting my diet to a good place.

I also did my best to make it so that I wouldn't be adding more toxins to my body by switching to only deodorant, switching from lotions to coconut oil only, using baking soda for washing my hair and coconut oil when it needed conditioner.

I did everything I could afford to do to detox - green smoothies, raw goat milk kefir(I made my own), Epsom salt/peroxide detox soaks, dry skin brushing, putting myself in situations so that I would sweat (I had to be careful as I lost the ability to regulate my body temperature for a while due to adrenal issues I believe). I also used activated charcoal - but this was also back in 2009/2010 - there was actually quite a bit less known about how Lyme bacteria and Lyme toxins responded to natural treatments.

What I find very interesting is that there is very little information on the type of Pinella that Cowden developed - other than what Cowden provides. I'm not sure what all that means, but I do find it interesting.

Wow those are some intense cognition problems I can relate. Sadly that gives me some hope that this might be my diagnosis, the world is strange sometimes lol. Alright I might just Amazon Prime some Banderol and see what happens. Any significant response will probably tell me a lot. Herxing/Clarity.

Diet doesn't seem to affect my mental state positively at all unfortunately. I've yet to try a legitimate gluten free regimen but typically poor quality food makes me foggy for like an hour and high quality food just seems to keep me neutral.

Also major congrats on your recovery :) that must've been incredible.

lymebytes said...
Its hard to say for sure which ones helped the most, I think all of them played an important role. I will tell you that I added in "mapalo" brain support around month 3 and saw a big difference. that one is not included in the standard protocol, you have to purchase in addition. My brain fog and mental sharpness was noticeable with that and very soon after starting it!

Also "amantilla" for anxiety and "ezov" for emotional support were helpful. All of these nutramedix herbs I mentioned can be found on amazon.

Good to know! Thanks!
Posted 7/25/2014 7:41 PM (GMT 0)
"Also major congrats on your recovery :) that must've been incredible."

Thank you!! :-) Yes, it was actually!! turn LOL! I was sooo excited when I started seeing improvements! It took me about 8 months after all treatments stopped before I even realized that I was healed - I was afraid to even think those thoughts!! I believe it was a full year after stopping all treatments before I ever said anything even on this forum. LOL! I still am amazed to be honest.
Posted 7/25/2014 9:38 PM (GMT 0)
The majority of my symptoms are neurological/psychological. I have mistaken myself for having a psychotic disorder. I have rage, cognition issues, anxiety, delusions, fatigue, ect.
I was reading through the links you sent about your story, and i saw that you were taking minocycline at one point? Saying that it helped at first, but ended up getting strange. It's interesting seeing that that's an antibiotic, and treatment for lyme disease can definitely make you feel worse/strange. How did it make you feel weird? why did you stop taking it?
Posted 7/26/2014 1:29 AM (GMT 0)

Traveler said...
"Also major congrats on your recovery :) that must've been incredible."

Thank you!! :-) Yes, it was actually!! turn LOL! I was sooo excited when I started seeing improvements! It took me about 8 months after all treatments stopped before I even realized that I was healed - I was afraid to even think those thoughts!! I believe it was a full year after stopping all treatments before I ever said anything even on this forum. LOL! I still am amazed to be honest.

Yeah I know how that goes, it's hard to not get your hopes up when you're so desperate for anything to work.

zoweee said...
The majority of my symptoms are neurological/psychological. I have mistaken myself for having a psychotic disorder. I have rage, cognition issues, anxiety, delusions, fatigue, ect.
I was reading through the links you sent about your story, and i saw that you were taking minocycline at one point? Saying that it helped at first, but ended up getting strange. It's interesting seeing that that's an antibiotic, and treatment for lyme disease can definitely make you feel worse/strange. How did it make you feel weird? why did you stop taking it?

Very good eye!

Yes it absolutely had a positive effect the first day which seemed to decrease over the next few days. It wasn't a controlled enough or long enough experiment to really draw any conclusions. The thing that mucks up that experience completely is that I took my Vyvanse while I was on it and didn't realize until later that that was in fact what was causing my almost mild 2 week psychosis on it. Every time I took Vyvanse even once, 2 weeks of bad times. I then made a difficult choice and let a family member have the rest when they got an infection. I really wish I still had it.

So you're not convinced that you have Lyme, but have bartonella instead? Are the treatment protocols different for that kind of thing?

I just YOLO (sorry) ordered some Banderol just to see what happens, if I herx at all I suppose that's a solid indicator of something bacterial going on.

It's interesting to note that I also receive significant (not in terms of remission of the conditions but in terms of it ACTUALLY doing something positive, statistically significant) improvement from KSM-66 Ashwagandha, and that when I take too much of it I feel pretty bad for an hour or two, in an overstimulated kind of way. I don't find it stimulating at all except for when that happens, it's usually just a plain old cognition fixer for me. It then subsides and I always feel improvement afterwards. I don't know if that could be considered a minor herx but it's interesting to consider.
Posted 8/2/2014 3:33 AM (GMT 0)
i second the advice regarding tests. clinical diagnosis is the way to go. the tests just are not reliable or 100% and definitely a needless cost in your case.
Posted 8/12/2014 6:56 AM (GMT 0)
*** Progress Update ***

Alright, so I've been experimenting with Samento and Pinella. Here's what I posted on another forum on August 4th (8 days ago):

Somebody said...
I'm getting a very significant result from it (Samento only), moreso than I could have expected.

In the beginning I experienced what could be called the "Herxheimer Reaction". So much so that I had to run to the bathroom in the middle of the night with moderately severe lower abdomen pains, it'd been a while since I'd experienced that level of physical pain honestly. I also experienced a weird headachish head pressure for the first week or so. Both of these are gone now and I experienced zero physical side effects. So perhaps I did have some residual bacterial infection, though it very well could just be an initial reaction to the supplement itself.

Tomorrow morning I'll be on 12 drops. The protocol calls for a progression to 30 drops starting at a 2 drop increase a day, with 1 being in the morning and the next at night. So tomorrow will be 12 and 13, next day 14 and 15, all the way up to 30 which is where it will then stay.

So right now I'm on my 6th day. I waited a little bit and will definitely need to wait a bit longer to declare anything absolutely but it's undeniable the results are pretty strong. Here's what I'm experiencing:

  • Substantial feeling of connection with normal reality. I've escaped the tension prison of my head for once, I'm thinking, responding, acting, able to be more normal, more myself for once. I did a normally extremely stressful event and after going through it and coming to a lull in the stress the normal mental momentum of a racing mind halted immediately. It was shocking. I can rev up and rev back down with the situations as they arise. Typically my mind maxed out at all times and stressful event or not it always feels that way, maxed out. I can now be in intense situations and then be out of them when they're done. It's pretty incredible.

  • I came to realize I've been having an almost 5 year anxiety attack, unrelenting. It's like my mind was just revved to the max for that long.

  • A past trauma came to the surface and I responded in a way like I used to, it severely affected me for quite some time, in a natural way. While it wasn't fun at all to experience and remember, it absolutely signifies that I'm able to process reality properly.

  • I've got to get used to having the ability to be calm, it's strange. Every so often it feels like things are just ok, I'm not used to it at all.

  • The relief is generally dependent upon dosing. It definitely carries on from the previous day but is absolutely the strongest after taken. It's probably too soon to draw much from this.


I'm definitely still having problems recalling specific words that I want, some typical mental confusion/brain fog, and things of that nature, but I've definitely experienced significant improvement in this short of an amount of time. Since I can actually calm down for a second and not jump to massive conclusions I'm just going to say that I'm not sure what is going on with this and I'm just going to ride it out for now and see what happens. Is it Lyme? I have no clue, but it appears to be either bacterial (herx) or something related to chronic inflammation. It is interesting though to note that I'm not experiencing increased herx reactions.

I have some Banderol on the way to try and work on other bacteria if that is the case. It's interesting because this is only 1 product from the 14 in the Cowden Protocol. Many are used to deal with detox symptoms but several are very strong anti microbials/fungals/virals that act each in their own way and are effective against unique things. I think the Banderol will be very diagnostic as well.

So all and all this is a pretty big one. I'm a bit tired from the weekend I'd liked to have described that all more enthusiastically but I'm spent.

Time will tell if this takes care of everything or if I'll need the entire protocol, if I'll need to continuously take it because it's not treating the root cause, and if it's related to Lyme or it's co-infections. I haven't even ramped up to the full dose so who knows what can happen with this single supplement.

Some relief is nice, it feels like I can rest in my exhaustion a bit, which to me is the beginning of recovery.

I'll update as I progress.

The results I got from that seem to have subsided during the administration of Pinella. I started using it about 4 days ago and it's sort of made things worse than they were beforehand. I don't know if it's because simultaneously the Samento lost efficacy for me and then the Pinella is causing it's own mini herx which is worsening my symptoms or if the Samento is still working but the herx reaction from the Pinella is covering it up completely. Of course maybe that's not even close to the reason and I just have a poor reaction to Pinella and it's not doing anything at all positive.

Either way It's very disappointing, I'm going to continue on course for a week or so, I'm almost to 30 drops with Samento. If no improvement is noted I may bump my Samento down to 12 or so where it was absolutely working and maybe stop the Pinella. I've also received Banderol and I'm starting my progression on that at the same time so it's going to be tough to determine what's doing what but for the meantime I'll trust in the Cowden progression and if I don't like it I'll move things back to where they were when I was feeling the best.

I'd do this because I'm open to the possibility that I don't in fact have Lyme at all and that maybe the 12 drops of Samento was just doing wonders against neuro-inflammation or something similar and anything above that perhaps has adverse reactions. If that were the case I would think Pinella would augment that quite nicely but it's having the opposite effect of that.

Any analysis of my results is welcome and would be appreciated. Will update with progress!

Thanks,

AE
Posted 8/18/2014 5:32 AM (GMT 0)
Alright I've dropped the Pinella for now and things returned to normal. I'm up to 13 drops of Banderol and am still on the 30 of Samento and I don't feel the Banderol doing anything. Nothing good or bad.

I'm beginning to think my problem may not actually be Lyme, but that it's something else dealing with neuro-inflammation. The Samento is definitely still working, but it may just be combating strictly inflammation.

I'll investigate this theory to the fullest extent that I can but I'm nowhere near as certain as I felt earlier that I absolutely have Lyme.

Thoughts?
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