Wild update on lyme and co-infections

It’s been a while since I posted here and figured I’d share some updates if this helps anyone. Over the course of the last 5 -7 years, I did the natural route by visiting several LLMD’s without seeing any improvements. I was completely strict and followed my doctors’ instructions exactly. Some of the protocols and remedies I tried included: abx for 3 months, Buhner’s protocol for a year, natural supplements for a year or two, rife machine, strengthening immune system, healing the gut, being on an inflammation free diet strict for 2 years (no gluten, dairy, sugar, soy, corn, etc.), LDI for a year, HBOT hard chamber for 26 visits, and many many others but just can’t think of them all right now.

Long story short, I had zero improvement and what’s even worse (and to my bewilderment) not a single supplement or abx ever made me herx. So it’s a tough situation when nothing helps AND nothing makes you worse – you’re left wondering it MUST be something else.

For the past 15 years, my top symptom has been sever insomnia where I’m waking up 30 – 60 times a night. Nothing on this earth has been able to help my sleep. Less severe symptoms are bloating/belly distention, thoracic outlet syndrome (arms go numb doing anything overhead), nighttime urination, and chronic dull low back pain when sitting in anything uncomfortable. I’m functional and workout regularly and "look healthy" by all measures. So I’m able to get by but I have a severe limitation by needing to go to bed early every night since I just get too exhausted in the evening.

I’m CDC western blot negative so by all measures I’m not recognized as having lyme or co-infections and therefore unable to get help. However, several LLMD’s have point blank told me I have lyme and co-infections going off of Igenex results and these doctors have worked with me. I’ve also been told point blank by regular physicians I don’t have lyme. See how frustrating this can be?

The last 2 years I’ve been a patient at a clinic in TN. They are fantastic and truly incredible but again so far no improvements after five visits. While we haven’t put a dent in any of my symptoms, I now have much more knowledge than I did 2 years ago. I wanted to share that through their bioresonance scanning, they were able to detect I have 8 bacterial infections (babesia, bartonella, lyme, mycoplasma, leptospirae, pasteurella tuloronsos, strep sanguinis, and bordetella pertussis) with 22 infections in total counting all of the different strains of (4 strains of babesia, 6 strains of bartonella, and 7 strains of lyme). Out of the 22 infections, 14 were found to be ACTIVE. Clearly running around and causing havoc in my body. It’s unbelievable since no lab test out there that would ever be able to capture this level of detail. Also unbelieve that I'm CDC "negative". At the very least it is validation and this is so important to me. I think a lot of us just want to be validated and then next step would be to focus on treatment. Not knowing what you have can just be so frustrating.

The center has been able to eliminate 12 strains of infections through induced native phage therapy in January. So far we are working on eliminating all 22 strains.

Two very interesting things is that in January 2022 we hit biofilms very hard after finding very high levels of them. When I came back in June 2022, 14 NEW strains emerged. We think the reason for this is that the infections were hiding in biofilms and completely evaded the immune system and evaded detection. By eliminating the biofilms, these infections were no longer able to hide and left out in the wild to be exposed. I highly recommend having a conversation about biofilms with your LLMD if your current treatment is not going anywhere. Also, three microscopic parasites were found which were believed to be preventing some of the treatments from working in January.

The center is able to help with parasites but sometimes natural remedies have its limitations. I’m currently looking for a LLMD near Long Island that can provide prescriptions for parasites and would be willing to work with me without going through a million different lab tests that don't pick up these things. Any suggestions would be appreciated.

Thanks!

Hi, thank you for your response. I don't take any offense to it at all.

Let me clarify to say I've had symptoms for 15+ years and most likely was bitten 20+ years ago. Getting infected was not recent but it's just that this center has been able to identify my strains within these last 2 years. Even before this center, several doctors using much less sophisticated technology were able to key in on these infections as a general category (i.e. lyme, bart, babesia, mycoplasma, etc.) but not get down into the specific strains. When several LLDM's were also finding these same infections, I think this becomes a lot more credible. Igenex is great but not as specific and has its limitations. There's many many different strains infection out there and I think knowing which ones you have is a very useful tool. I don't know the specifics but if there's 20 strains of babesia let's say and Igenex only tests for X amount, I don't particularly find this useful (this is just an example) - same can be said for lyme (20 strains, etc.) , bart (20 strains, etc.), etc.

I think it is entirely possible that when I was bitten by a tick (or several) that there were this many strains injected at that time.

Why do you think having 39 strains is not possible? It's only the big 3 (lyme, bartonella, babesia) that produced multiple strains, the rest were single strain infections. I can list all of the strains if you'd like.

Hi - yes, this is Dr. D.J.'s center.

I haven't seen any improvements yet from the INPTs and I'm probably not a good example to use. Nothing has worked for me in 15 years - so it's not something specific to just here. The good news is the infections are clearing and I can't say for sure why I'm not seeing improvement. I suspect I won't see an improvement until all the infections are gone. Without knowing which one is the main culprit, it's entirely possible that all it takes is just one of these to cause complete destruction in the body.

I don't know the specifics of how the bio resonance scanning works other than a specific species located in a vial is rested on my body and it is checked with the doctor. If there's a frequency match, then that's the confirmation.

Thanks for the heads up! It's always good to hear both sides.

Going back to Igenex, what I didn't like about these tests is that since I was bitten 15+ years ago, I'm only testing positive to IgG, which many doctors don't consider positive because it technically only represents a past infection. And since this test doesn't give you any additional information, you have to interpret whether or not you have an active infection.

I agree with dcd and RainyCloud.

Over and over and over again one of the main symptoms of mold sickness I see is sleep disturbances. Have you looked into mold at all?

ON the mold FB groups I am in sleep disturbance is easily top three symptoms and complaints.

Bio resonance is an excellent tool for many of us who use alternative methods to treat multiple strains of infections.

IGenex is not foolproof. It is possible to get a false negative. It is also possible to not experience success under the care of the more well known LLMDs.

Appreciate the input so far.

Although I'm a little surprised at the feedback for being so overwhelmingly negative for natural treatment.

Does everyone here prefer the antibiotics route instead?

For anyone still open to natural treatment, wouldn't visiting a center with more advanced technology make sense if you've given 4 years of your life to 4 different LLMD's without any improvement whatsoever? At some point you have to say this isn't working and try to move onto something better.

Hi 1yrinVA, I did the traditional doctor route prior to starting on my lyme journey. Tried cpap 3 times and 2 expensive dental appliances. Natural remedies like melatonin and 20 others and prescription medications as well. After all that didn't help, I had 6 or so sleep apnea surgeries and ended up having jaw surgery which drastically opened up my airway so I can rule anything structurally related causing my apnea. Sleep studies showed mild apnea and low oxygen saturation pre and post surgeries. With no improvement here, what in the world could be causing sleep apnea and low oxygen saturation?

After researching, lyme has been found to cause apnea AND babesia has been found to cause hypoxia (low oxygen saturation) at night. I don't think this is just a coincidence I have these infections and also to have these issues at the same time. Given I tried so many non invasive things followed by surgeries and still have no improvement at all, I think it's still fair to say lyme and coinfections are a possible culprit that I need to rule out.

Hi Lapis_29, they actually did find mycotoxins in my brain while I was at the center although they didn't find mold. Most likely this means I'm not exposed to mold on a daily basis like living in a moldy home but more likely mycotoxin exposure is environmental such as the 6 cups of coffee I drink a day. They gave me a mycotoxin remedy, systemic binders, and I'm getting rid of all of my bad coffee and replacing it with a brand that tests free of mycotoxins.

some good advice already in this thread.

i know you have been given feedback on bio resonance as a means of testing already.

the main issue is it is a technique that has no supporting scientific evidence and people using it to guide their health decisions need to know that.

the practitioner in question repeatedly and on their website makes all sorts of claims about the science involved - list many scientific papers and tries to present their process as some kind of logical extension of that work - but anyone with an actual scientific background will tell you that there are enormous gaps between the physics that is demonstrated in the papers that the practitioner sites - and what the practitioner claims their testing and treatment are doing. And i mean ENORMOUS GAPS to the point that it makes no sense at all to site those papers - unless your aim is to bamboozle your clients.

when confronted about this by actual scientist's, the practitioner's response was essentially "it works so what i say must be true - and so i do not need to explain how "
that is not how science works - but if you are not scientifically minded or - take what is said on face value due to personal trust in the persona behind it - or perhaps just wanting to believe it is true - it can sound convincing enough.

i cannot tell you if this is being done deliberately in bad faith for purposes of profit - or whether the person is merely deluded about the benefits of the process they employ - but anyone considering it as a treatment option should be aware that the science sited does not in fact support the claims made in any meaningful way.
This part is an objective fact. Anyone telling you otherwise is, i am afraid, either dishonest or delusional.

Garzie - are you referring to bio resonance as a whole category found in many LLMD's offices or are you specifically referring to the bio resonance offered at the center in TN that I went to?

I agree that bio resonance used in a typical LLMD's office is not very accurate at all but merely a tool that is used in conjunction with testing.

The bio resonance testing I had done at the center is LIGHT years beyond these machines. Everything found on my Igenex tests were easily detected at the center down to the specific strain - no problem. I never showed my Igenex tests first (and then they simply said oh yea you have this). I had them give me their findings and confirm that's what Igenex found. I don't have the details but I've been told that almost everything they've found in the center if you take that to a lab it has been verified independently.

cppoly said...
Garzie - are you referring to bio resonance as a whole category found in many LLMD's offices or are you specifically referring to the bio resonance offered at the center in TN that I went to?

I agree that bio resonance used in a typical LLMD's office is not very accurate at all but merely a tool that is used in conjunction with testing.

The bio resonance testing I had done at the center is LIGHT years beyond these machines. Everything found on my Igenex tests were easily detected at the center down to the specific strain - no problem. I never showed my Igenex tests first (and then they simply said oh yea you have this). I had them give me their findings and confirm that's what Igenex found. I don't have the details but I've been told that almost everything they've found in the center if you take that to a lab it has been verified independently.

this is always very difficult cppoly - in the end people will believe whatever they want to believe no matter what the facts - so i hesitate to write to suggest otherwise - but i felt obliged to at least try - to at least let you know there is in fact no since that really supports the claims being made.

ref this clinic finding what igenex found - that is no surprise to me - as i think you said they found 26 species and then 13 more - so that covers pretty much everything Igenex would test for - no?

i have not looked into what other LLMD's offices use - my comments were specific to the originally mentioned practitioner - as that i have looked into.
however, i note that most of the top LLMDs like Dr H, Dr J, Dr MR, Dr SP, the recently deceased Dr Jones, Neil Spector, Alan Macdonald, Burrascano...etc. do not, to my knowledge, have anything to do with bio resonance.

again - we are all entitled to our beliefs - and its not my job to change yours if you are happy with them - but since you posted here looking for advice on your journey - and since i do have a scientific background and had looked into the practitioner you mentioned, i felt it appropriate to pass on my findings.

cppoly said...
Garzie - are you referring to bio resonance as a whole category found in many LLMD's offices or are you specifically referring to the bio resonance offered at the center in TN that I went to?

I agree that bio resonance used in a typical LLMD's office is not very accurate at all but merely a tool that is used in conjunction with testing.

The bio resonance testing I had done at the center is LIGHT years beyond these machines. Everything found on my Igenex tests were easily detected at the center down to the specific strain - no problem. I never showed my Igenex tests first (and then they simply said oh yea you have this). I had them give me their findings and confirm that's what Igenex found. I don't have the details but I've been told that almost everything they've found in the center if you take that to a lab it has been verified independently.

I totally understand that we are in no-mans land with disease. I have tried questionable treatments due to desperation and running out of answers and I wouldn't be surprised if I did it again. The issue is there are people who know this and take advantage monetarily.

In my opinion, you should be asking your practitioner how this machine works and how it can accurately identify not only these different microbes, but the specific strains. If they give a sciency sounding answer that is akin to "trust me bro" talking over your head then that is a red flag. The practitioner you are seeing is claiming to have a machine that can accurately diagnose dozens of different infection (along which ones are active) as well as the only practice that can eradicate borrelia with phage therapy. Has this chiropractor really figured out several different novel methods for diagnosing and treating, and hit them out of the park, that no one else has? or is something else going on?

This is a tough disease. Patients are desperate and they can easily lose their hat to practitioners using questionable methods with dubious intent.

Even some of my treatments with my previous LLMD, which were pretty much standard ILADS, I look back on sometimes and wonder if it was worth the money and time. I think us chronically ill people have to become skeptics, but at the same time be willing to to step out into no-man's land at times. Unless one if wealthy I've found the best strategy to to take informed and planned pot shots. If not, then you will soon end up broke, still sick, and these dubious practitioners will have enriched themselves off your suffering.

Of course, everybody will do what they desire to do. I don't want to tell anyone what to do with their time, money, or health. Just offering a different perspective.

Post Edited (Lymie24) : 6/21/2022 2:23:54 PM (GMT-6)

Are there documented cases of people with more than one strain of Lyme? Is that even possible?

about your sleep issue, I used to wake up every hour until I fell asleep again +- 10 mins later.
That problem went away when I came across the shoemaker protocol (for mold illness) and started taking modified citrus pectin.