Maybe I shouldn't post this here, but...

I want your honest opinions and experiences here....I am not targeting anyone, I am honestly just curious.

I am very confused about the whole world of chronic Lyme and chronic Lyme treatment. I'm almost done with a B.S. in Biological Sciences....my whole education I've learned about how scientific research is conducted, etc...and while I am open to new knowledge and perspectives, I just really struggle believing that the current medical/scientific system is somehow purposely avoiding something like chronic Lyme and purposely lying to people.

I have looked at both sides extensively and am just left with so many questions, my head is quite literally spinning. Obviously I know no one can answer all these, I'm just looking for perspectives.

Why is it such a niche community of LLMD's that don't take insurance and expensive tests that almost everyone seems to get a positive on (I've heard only once of a negative Igenex result, and the papers they release about their methods often contain typos and inaccuracies)? Why do the official CDC studies that look into the effect of long-term antibiotics on Lyme find no more effect than a placebo? Why do CDC standards declare that almost everyone gets a bullseye rash and some other websites like CanLyme declare 91% of people don't?

Treatments: there seems to be so much overlap between chronic Lyme and sketchy treatments that seem to be out to take people's money. Antibiotics and herbs I understand, but rife? (which also claims to cure cancer)Colonics? (no scientific evidence supports their benefits) Healing crystals you charge under the moon? I know these are kind of cheap shots at things many people do not use, but the overlap is still weird to me. Expensive doctors that you must drive hundreds of miles to see and that hide their practices from the law? Why would it have to be this way? Insurance companies accept paying the price for tons of expensive conditions, from heart disease to cancer to mental health...why is this so controversial and secretive? Why is everything linked to ILADS? And why would one disease be so incredibly variable in each person in symptoms and in response to treatments? When people get a cold virus, we all cough and sneeze. When you you get a UTI, antibiotics make it go away in practically everyone. Why does this disease encompass just about every bodily and psychological complaint a person could ever have?

I have read countless individual stories...most of them sound rational, some even sound like my own symptom experience, and of course I know that I have no right to tell others their experience isn't legitimate...most of these stories are actually very inspiring. But some (and this is mostly on mdjunction or on some personal blogs) are so long winded and wax poetic about GOVERNMENT CONSPIRACIES and go on and on in all-caps.

I am a skeptical person, and therefore I've yet to go put my money into getting tested by Igenex, because I wouldn't know what to do next, what to make of the result that comes back. It's somewhat surreal. I bet my parents and friends would not even believe it, and that's not something to just ignore and say "Oh well they don't know the TRUTH"...my parents and my friends are rational people. I've considered trying to somehow get a regular CDC test, but I don't know how I would convince my doctor to do that without symptoms like joint pain and without bullseye rash. So I'm looking to you guys with my doubts....feel free to criticize, but I really mean no harm. I am worried and confused.

Hi cubs,
I was a LOT like you, although I don't have a college degree (one of the things that chronic Lyme robbed me of) - but my daughter has a BS in Biological Sciences. She told me that my life long illness and the inability to get help is the main reason she went that direction with her education and now her job.

Why not start out with reading these. It points out the differences between the IDSA and ILADS:

www.clinicaladvisor.com/controversy-continues-to-fuel-the-lyme-war/article/117160/


archinte.jamanetwork.com/article.aspx?articleid=226373


www.ncbi.nlm.nih.gov/pmc/articles/PMC2901226/



LLMD"s have had to "hide out", as many have been persecuted and have had their license to practice medicine revoked, or have had to hire a court ordered monitor to make sure that they are no longer providing the abx and doses that ILADS states is necessary, but instead follow IDSA guidelines - you know, the ones that put so many people in the position of having to find treatment for the chronic Lyme they claim doesn't exist.

Lyme is the only infection that has a set amount of time for treatment, then treatment is ended even if there are ongoing symptoms, or symptoms return. Imagine if they did that with pneumonia? Society wouldn't stand for that, believe me!

I'm assuming that you don't really want personal stories, as there are a lot of those available. If I'm not correct in that, please clarify it for all of us.


And I would also like to remind all members that Cubs is asking legitimate questions. I'd like for all of us with information to help them learn and see these truths.

You have some good questions. I too, question many things, its my analytical nature.

To sum it up there are many treatments for other illnesses that ins does not pay for. A past boss of mine and ex multi millionaire, had cancer. Since he had $, he traveled out of the country for the "latest" treatment not avail in US, and lived a few more years. He would have died erlier with only US treatments.

Lyme is a lot like Aids was in the early 90's, many non accepted treatments, some of which worked.

The CDC is a government agency. Their #1 job is NOT to protect your health. NOT.

The CDC's # concern is to keep America CALM in health type crises. This is a fact. Truth, (or the whole truth) do not always keep people calm, it can however cause chaos.

I do agree that there are some people taking advantage of all ill people, always have, always will. Some people just want others money and dont have a conscious. NOt all, but some are like this. They exist in all professions.

Just a comment on you saying people get a virus and react the same. That isn't the case as I've seen in my family and others over many years. Some of us present with a cough, some with just a runny nose, etc. and we each use something different to get over it.

Keep an open mind about other ways of healing. There are several alternative treatments that have been around a long time.

You sound like me before I got sick. I got a degree in biology as well and am a big skeptic in general of most things that are not backed by science. If I didn't go through this thing first hand, I really wouldn't have believed it either, that's the only way I can put it haha.

Basically a lot of the science behind it isn't very good science either way. There are so many different factors that you must understand. First I'd have to say that people with chronic lyme aren't just treating lyme. In fact, that's often the least of our worries. When the tick bites a person, they transfer many different types of bacteria and parasites, called co-infections. Bartonella and Babesia are the two that get the most attention and are often considered more difficult to treat than lyme itself. If a person were to have just lyme by itself, then sure maybe the CDC's guidelines might have a higher success rate. But our immune systems are so beat down by having all of these infections at once. To avoid relapsing, a person must treat all of these coinfections and lyme.

The politics of this disease are crazy. Follow the money. It all goes back to the insurance companies not wanting to cover people for lyme. The IDSA receives kickbacks from the insurance companies to continue to deny chronic lyme so the insurance companies don't have to cover it. I also don't think that the IDSA would allow people open-ended antibiotic treatment. Science on both sides is poor because there is no money to fund scientific studies either way.

Chronic lyme does exist, and I am absolutely living proof. It is no placebo that I feel so much better on antibiotics and antimalarial medication, the difference is night and day. Like I said, I used to be very skeptical, but this disease has really opened my eyes. The disease is so variable in people because we all have different coinfections and we all have had it for different amounts of time.

I suggest watching a movie called "Under Our Skin". You can watch it free on Hulu. It goes into a lot of detail about how big of an issue lyme is becoming. Here's the link:

http://www.hulu.com/watch/268761

Wow. lots of impressive replies- thanks for taking the time! I have too much homework tonight to respond to each point, but I'm definitely taking them all on board.

Well, it's true. I wish I could prove it to you with words, but my brain's really taken a beating from all this. Though, some will try, some have tried, as I see. They'll keep trying too. That's good. Fight the lies, fight the disbelief, on all fronts. Use your words.

But, in my mind, in time, the sickness and those it affects, the sufferers, the ill, their family and friends alike, those things will speak for themselves. We won't have to anymore. The facts will be evident.

I tell everyone, watch, within the next decade, this stuff is going to be huge. If nothing any of the people here have said is enough to make you see, just wait, watch.

Though, I'm glad we have some smart people who can offer scientific responses. I sound like it's a religious thing or something. Like, "God is coming, just watch." Ha.

Anyway.. not much more to say from me.

Change will come, someday. I just hope that some of us can make it to see that day with the rest of you.

I think your questions and skepticism are quite valid. Frankly, if I weren't living this thing I wouldn't believe it either. I am of a very scientific nature and worship at the altar of rational logical critical thinking.

But I've gone through the looking glass with this thing. I wouldn't be surprised if a decent subset of cfs/fibro/ms patients actually have an infectious disease trigger that is hard to dx via lab work, as these infections can be very hard to accurately test for. It looks like Stanford is pursuing some interesting work along those lines, and I'm heartened to see they have a tick-born infections category as well: http://med.stanford.edu/chronicfatiguesyndrome.html I don't know how effective their lab tests for these diseases are, but hopefully they are decent.

I have no doubt there are unscrupulous drs who are treating lyme and bilking patients, but there are unscrupulous interests on the other side of the coin. And the only people who are providing patients some relief are the drs who are treating for these chronic infections. Are treatments perfect? no! but it is that avenue that has provided relief and improvements for a large majority of very ill patients who were left for dead by the current status quo. And unfortunately many drs treating these diseases can't accept insurance because the insurance companies will go after them for providing non-IDSA guideline treatments (which cost a lot more $$$ to the insurance companies). Suffice it to say the IDSA has issues in its reliability and its agenda.

But things will only be clear once we can get gold-standard testing 99% and above accuracy for these infections, meanwhile we are stuck in the dark. I hope the science and research develops, with a true scientific dialogue. And there are so many questions, we all harbor infections, viruses, pathogens, but why do some people get very sick from these diseases while others are asymptomatic and fine?

My hunch is we are going to find out a lot about these chronic infections in the coming years and the mainstream medical community will come around. I think the medical community assumes we discovered everything there was to know about infectious disease in the 20th century, but I don't think that is correct. There are still a lot of unknowns, and a lot of diagnostic hurdles that prevent us from accurately dx'ing and understanding these diseases, which I consider stealth pathogens.

And sadly, politics, entrenched interests, peoples' careers/egos on the line, and $ are at the heart of a lot of this controversy.

Btw, if you are interested, a really great book on the subject is Pamela Weintraub's Cure Unknown. Highly recommended.

Post Edited (sebreg) : 11/9/2015 9:42:23 AM (GMT-7)

cubs103 said...

and expensive tests that almost everyone seems to get a positive on (I've heard only once of a negative Igenex result, and the papers they release about their methods often contain typos and inaccuracies)? .

You've got some very valid questions and concerns. I too wondered the same thing re the many positive results from Igenex and very few negatives. It's so weird how we pay so much for these tests and the number of positives are so high. I'm not saying these results are false or have been tampered with, I just think it's strange.

I came across this article which made me wonder

http://www.nytimes.com/2005/08/23/health/policy/unproved-lyme-disease-tests-prompt-warnings.html?_r=0

I have a feeling that things are going to blow up pretty soon and the medical community who is in denial is going to get a rude awakening when they see how the numbers are increasing astronomically. More and more people are getting sick and not being treated right. They are spending way too much time searching for answers by going through the maze of specialists with no results. All I hope for is the medical community to realize this is happening and it's affecting more people than they think. It's getting to be too much.

cubs103 said...
I want your honest opinions and experiences here....I am not targeting anyone, I am honestly just curious.

I am very confused about the whole world of chronic Lyme and chronic Lyme treatment. I'm almost done with a B.S. in Biological Sciences....my whole education I've learned about how scientific research is conducted, etc...and while I am open to new knowledge and perspectives, I just really struggle believing that the current medical/scientific system is somehow purposely avoiding something like chronic Lyme and purposely lying to people.

I don't think there is any conspiracy, just a lot of ignorance...

I am not sure why people in the medical community are so baffled there might be a bacteria that can cause chronic infection, which is very hard do eradicate with antibiotics. If you are graduating BioSciences you must have heard of TB. It is hard to treat, takes 6+ months of multiple antibiotics and after this you still may relapse.

It's because it creates persisters, and in the case of Lyme they just found it this year
www.northeastern.edu/news/2015/06/researchers-discovery-may-explain-difficulty-in-treating-lyme-disease/

You must have heard of this guy, Kim Lewis, he found a new class of antibiotics and published the finding last year www.bbc.com/news/health-30657486 there was a huge media coverage, i don't think he would easily play his own reputation.

cubs103 said...

Why is it such a niche community of LLMD's that don't take insurance and expensive tests that almost everyone seems to get a positive on (I've heard only once of a negative Igenex result, and the papers they release about their methods often contain typos and inaccuracies)?

I have a cousin that tested negative to IgeneX, so not everyone tests positive. But maybe there are lots of people that are asymptomatic. Remember the disease manifests itself as a flu in the beginning.

cubs103 said...

Why do the official CDC studies that look into the effect of long-term antibiotics on Lyme find no more effect than a placebo?

Again, TB is treated with 2-3 antibiotics at the same time, The CDC Lyme tests you are talking about were done with one single antibiotic, of course it's placebo. You cannot effectively cure TB with one antibiotic, why would you cure Lyme? We now know it creates persisters, just like TB.

They just found, this year, a combination that kills the bacteria in vitro and there are trials right now in NY.
journals.plos.org/plosone/article?id=10.1371/journal.pone.0117207

Notice they use 3 antibiotics, 2 of them intravenous and quite potent. Also please note all these findings and research papers i quoted were published in 2015 and in quite serious publications.

cubs103 said...

Treatments: there seems to be so much overlap between chronic Lyme and sketchy treatments that seem to be out to take people's money.

Absolutely ! Desperate people are being preyed upon by all sorts of false doctors that sell hope.

cubs103 said...

Antibiotics and herbs I understand, but rife? (which also claims to cure cancer)Colonics?

Yeah, I think rife is placebo.

cubs103 said...

I have read countless individual stories...most of them sound rational, some even sound like my own symptom experience,

True, it's not a disease where you spit blood, with high fever. The symptoms are much more subtle, that's part of the problem why it has been ignored for so long. Makes sense, no ?

Rife is not a placebo. It works for some people - really. When I started on this forum back in 2007, no one was using herbs except one person, who is still a member here - Dejavu. She was mostly being placated as not many believed that she healed or that maybe she was just the "lucky one" - I'm not sure. I was too sick to make heads or tails of that.

From 2007 - 2008 I used abx, like everyone else on this forum, but when I finally said that I had had enough, I was much, much worse and stopped my abx treatments. My LLMD and everyone on this forum told me that I had to find a way to use the abx or I simply couldn't heal. I asked about herbs, and was told they might help with some symptoms, but it was mostly just a placebo effect.

I healed very, very quickly with herb only treatments. I had a 40 yr old set of infections that healed in just 2 years. First no one believed me, now lots of people are using herbs, and sometimes only herbs, to heal these infections. So we can't discount many of the means that people use to heal and calling them a placebo can be very offensive to someone who has no other choice on how to heal.

I've talked with a few people that have used Rife to heal, and several others that have used Rife as an adjunct therapy to help them heal. They have their own forums though, because they get tired of being beat up on these forums.

Now, with that said, we do have to be very, very careful about what to choose to heal. There are more scams out there every year!! People using the desperate to get a little money. There are only a few things that actually work to heal these infections from what I have seen/heard on forums and in talking with those that have healed - so be careful, do your research, and choose wisely.

It's definitely not in your head. Get tested at Igenex. If you have enough money, you can get tested for co-infections as well. If you get a negative lyme result, it doesn't necessarily mean that you don't have it. They're testing for antibodies, or your body fighting off the disease. If lyme has compromised your immune system, you can test negative, yet still have it.

I am new to this board and there is a lot to follow. Briefly, I got Lyme in Germany in 2011, but did not recognize it for several months. Became a chronic problem that was confirmed with Elisa and Western Blot. I received a line-of-duty determination so I could get treatment from a military medical treatment facility (MTF). I have been the route with various antibiotics, but decided not to push for IV antibiotics. Lots of controversy about why it works sometimes and not others. I am an MD so I have a good idea about why Lyme has been so difficult to treat.

One of the concerns that I have has been the cost for treatments from some LLMDs. Most of the treatments have not been proven to be clinically effective in limited research studies. In addition to the clinic fees (several thousand dollars) I have heard that some are spending $800 a month on supplements!

Due to my experience as a physician and the conflicting research on treatment I elected to add herbal preparations. This has continued to evolve and has worked well. My personal experience is that Buhner has been correct in noting that Japanese Knotweed is probably one of the more effective herbs. He previously thought Andrographis was the most effective. I think he probably recanted due to the fact that it can have a side-effect (usually temporary) of affecting taste. In my case Andrographis was effective, but found that it temporarily altered my sense of sweet, salty, sour, and bitter taste.

What I have learned in the process is that you need to add one preparation at a time. Combination herbal preparations make it impossible to know which one is effective, or which is causing side-effects. The Deutscher Borreliose Gesellschaft guidance is very helpful. Add one herb or antibiotic at time and wait to see if there are any side-effects. Find what works for you since individuals react differently. Ranking what worked for me by stars with 4 being most effective and 1 being little or not all is as follows:

**** Japanese Knotweed Rhizome (Hu Zhang) : Resveratrol from grape seed extract is not the same and only minimally effective. There are other compounds in the whole plant that make this effective. Crescent Moon (EBay) has a reasonably priced tincture around $30 for 8 ounces, doses need to be close to 1/2 teaspoon, 3 times a day. The dose can vary higher or lower and needs to be adjusted according to what works for you. It took over a year to learn that Buhner was not kidding about the higher doses. A little does not work (this is contrary to homeopathy-based treatments). Another source is Active Herb for concentrated granules, $20 for 100 grams, which should last about a month. The quality is regulated under Chinese manufacturing standards, which is better than trusting the various tinctures that are out there.

**** Andrographis: Effective, but side-effects are more common as mentioned above. It is unknown how many have had the side-effects or how long they lasted. Variable sources on Amazon that are fairly cheap.


**** Artiminisin aerial parts (also known as Sweet Wormwood): This was originally discovered by the WHO to be clinically effective in the treatment of malaria (also a spirochete like Lyme), and has been the basis of newer malaria treatments. It can be inactivated by enzymes in the GI tract so taking 2-3, 500 mg capsules every other day seems to work. Thorne has been a reasonably priced source through Amazon.


*** Teasel root tincture: Depends on the strain and geographic location of Lyme, but the tincture can work very well for some with doses around 1/2 teaspoon 3 times a day. Dutch medical practitioners have found it to be effective. Crescent Moon is a reasonable source, $30 for 8 oz.


*** Cat's Claw: Lots of debate about composition. Cowden thinks that it needs to be free of tetracyclic oxindole alkaloids (TOA) and only have the pentacyclic chemotype ($30 for 1 oz !!!). Buhner disagrees with the TOA argument and thinks it does not matter. Crescent Moon has a tincture priced similar to their others for 8 oz, same dosing applies. Saventaro has the TOA-free preparation for around $25 for 90 capsules, which lasts for a month. You can use both and see what works best.


*** Stephania: Tincture from Crescent Moon is not tetandra, but seems to work. Same pricing and dosing as other tinctures from Crescent Moon. The tetandra form (Fang Ji) is available from Active Herb - $20 for 100 grams. These are supplied as concentrated granules, which is probably more effective dose-wise. They are also more reasonably priced. Stephania is helpful for neuroborreliose symptoms, which are more prominent in the European variant that I was "blessed" with.


There are a lot of other herbal preparations that fall into the 1 or 2 star category that can help. Bottom line is that Buhner's book is extremely helpful in crafting a strategy that could work. Horowitz is helpful for knowing which antibiotic and herbal combinations are helpful, but this requires a physician who is willing to work with you. For some it will require both herbals and antibiotics. It is very complicated and beyond what I can describe in one email.

Bottom line is that people have varying symptoms and response to treatment due to different strains of Borrelia. The presence of co-infections or other pre-existing medical conditions can complicate matters. At the very least be cautious about a clinic that is charging thousands of dollars for consultation and treatment. I do not want to personally name or bad mouth a LLMD based on hearsay from a blog, but I do have significant reservations about some. If they are selling high priced supplements that is another warning flag. I have been spending between $100-150 per month for my supplements. While this is not insignificant it is far more reasonable than the $250, or $800/month that I have heard people spending on treatments from the LLMD sources.

I look forward to hearing what has worked for others.

Kott