Here is a website devoted to a new way to cure Lyme disease: ingesting large amounts of Vitamin C and salt. The website is vague about who made it but it certainly isn’t a for-profit enterprise. It begins:
After 13 years of suffering with Lyme disease, a possible cure has been stumbled upon. A cumulative effect of much research has produced the possibility that salt and vitamin C may be all that is needed to beat this elusive illness. Without going into a lot of detail, our theory is that Lyme is not just a bacterial disease, but also an infestation of microfilarial worms. . . From experimenting with the treatment of salt and vitamin C, we settled on a dosage of 3 grams of salt and 3,000 mg of vitamin C, each dose taken 4 times per day. . . . The Treatment can be grueling; taking it with food may aid in digestion. The results [= the improvement] should be almost instantaneous.
Unsurprisingly, people a naive person might think would be interested turned out to be not be interested:
We have tried on three occasions to get help [= interest in our findings] through the CDC to no avail. The responses were things such as: thanks, we’ll forward to a lyme researcher; or, we don’t accept contributions or downloads from individuals; or, these pictures are obviously fakes. . . . We tried the university routine. A public health researcher put us onto a microbiology chair, who sent us to a CDC parasitologist, who said he wasn’t a clinician and suggested a pathologist. . . . We tried the most noted lyme sites on the web. We were disappointed that most of them seem more concerned with fundraising than disease.
Which sounds like “we” is one person — a man. In any case, I hope “they” will allow outsiders to contribute experiences, perhaps by adding forums to the site. This is terrific work.
“We were disappointed that most of them seem more concerned with fundraising than disease.” I’ve heard that complaint about charities in Britain.
One of the big problems with the personal science movement you espouse is that idiots on the internet can suggest really harmful things. This is one of them. Nowhere on that website does it say that you should monitor your blood pressure, and if you’re eating that much salt 4 times a day, you really should be monitoring your blood pressure.
Another example: all over the internet people talk about the few papers which link iron deficiency with RLS. The problem is, that’s only for _some_ class of RLS patients, and it’s not easy to get iron levels tested on your own. Taking supplemental iron pills, which I’ve seen recommended on RLS fora all over the place, can cause long term heart damage.
If you don’t publicly talk about this kind of thing, and suggest or discuss ideas to remediate it, you are part of the problem, since you are strongly recommending to people that they try things like this. One reason doctors are so cautious is liability. I think this post is pretty close to something that should be considered liable if people read it, go and eat salt until they have strokes.
Coming up with and publicizing a new way to cure Lyme disease is a “really harmful thing” because it didn’t say you should measure your blood pressure? Perhaps the author of that website felt it was obvious. Or perhaps he himself did not get high blood pressure from the salt he was eating. Both of those would call your outrage (“idiots”) into question. However, I agree with you to a certain extent. As I said, the author of that website should make it easy for others to share their experiences. Whether that often includes high blood pressure remains to be seen.
In the case of RLS, you seem to fail to understand that if your RLS is cured by taking iron supplements, it is likely you had an iron deficiency to start with. People who have iron deficiencies and then take iron are unlikely to get heart damage from doing so.
Thanks for the link, Seth. I will give this a go and report how I feel in a few days.
I have hear different view on “Chronic” Lyme. A lot of people say that it doesn’t exist. That is the mainstream position that may or may not be right. IA few years ago, I was diagnosed with Lyme and even got Lab results from Igenex lab that indicate I have Lyme and Babesia. I was sent to a “Lyme specialist” who put me on an expensive protocol. I became frustrated because of a severe reaction to the antibiotics prescribed and because I was confused as to whether or not “Chronic Lyme” even exists.
I am tempted to try this protocol (aafter all, it’s cheap) except for one thing. Wouldn’t it cause just as much gut dysbiosis as a course of antibiotics? What do you think?
There’s a lot that seems wacky about that website.
Ans, I’m interested how you feel in a few days. Make sure you drink enough water!
Yes. But the underlying idea makes sense.
Yes, it might cause gut dysbiosis. But I believe you can easily recover from that: eat plenty of fermented foods.
How many species of “good” bacteria are in our gut? I think I read at least 150 different species. Do fermented foods, or even the best probiotics, normally come near supplying that many species? I don’t think so. On this protocol, you are killing bacteria every few hours (take the Vitamin C and salt with meals). Can you really repopulate your gut with such an aggressive protocol? Don’t get me wrong…if you KNOW that you’ve got Lymes, it would be worth the risk. I have some of the symptoms that the Chronic Lyme people suggest indicates Lyme disease (including some lab results), but it’s such a long laundry list that just about anybody could have Lymes, based upon that.
According to the website, it might be necessary to persist with this protocol for up to 3 years. What kind of havoc could that play on your gut bacteria?
yes, exactly how to use fermented foods to preserve or restore healthy gut flora is an open question but I’m sure it involves eating quite a few fermented foods.
I wonder if Ans tried this protocol and, if so, how it is working out.
Also still curious, as a know someone that struggles with Lyme…