Guest Blog: Top 30 Lyme List by Bill Syrjala
- Last Updated: 24 October 2014 24 October 2014
I had seen a version of the below in the past and was impressed with it. The below was recently shared on Facebook and I found it insightful and very helpful. With permission from Bill Syrjala, I am sharing it here for others to benefit from. Bill can be contacted on Facebook. From Bill:
I lead a research team that has been performing medical research for many years on various medical conditions, including chronic Lyme. We have interviewed and analyzed the medical records of a few hundred chronic Lyme patients. We have reviewed most of the Lyme books out there. We have spoken with some of the best LLMDs in the US. As a result of all this, we have been preparing a list over the years of things that in our opinion most Lyme patients should attempt as a 'baseline' while working with their LLMD's, and their LLMD's prescribed meds for Lyme/coinfections (this is regardless of whether you are taking Rx's vs a natural approach to killing pathogens, which is a topic which we will address in a later post). Some of you may already know about many of these items.... some of you will never have heard about them. In our opinion, this list should be viewed as a default starting point, with items being eliminated when an LLMD advises you to do so:...
1. oral probiotics (pills and drinks) - diversify with as many brands and strains as possible e.g. VSL3, Ultimate Flora Critical Care, HSOs, coconut milk, kombucha tea, some fermented foods, etc
2. sleep study for sleep apnea, PLMD, etc (FYI: if apnea gets treated, most people have better results with an APAP than a CPAP machine) - this is mission critical for many Lyme patients, as impaired sleep quality (especially sleep apnea) can harm the immune system, cardiac system, and others
3. trial of anti-parasite meds/herbals/iodine, as an 'indicator' to help you determine if you might need treatment. Most Lymies have parasite overgrowth, and many have found that Ivermectin or Albendazole were their 'missing link' that finally got them over the hump to a cure. Note: parasite tests are very inaccurate... many people have even resorted to taking their stool sample to a vet for better tests than humans get.
4. Rx for low dose naltrexone (cheap, safe, and effective immune modulator - also helps many with sleep and pain) - also, most LLMDs and compounding pharmacies arent aware that the filler that gets used for LDN can have a major effect on whether it is absorbed or not (and can also lead to GI symptoms). Someone i know found enormous relief from pain and sleep issues when they changed their LDN filler. Here is a good discussion on this issue: http://ldn.proboards.com/index.cgi?board=forum&action=display&thread=87
5. enzymes (systemic and digestive) for biofilm, fibrin/hypercoagulation, parasite treatment, and nutrient assimilation
6. the Lyme diet (long subject - lots of info on the web), but generally:
A) UNLIMITED vegetables
B) some raw fruit (low GI)
C) some good meats (organic beef, chicken, eggs, low mercury fish)
D) some good fats (avocado, EVOO, coc oil, flax, fish oil, egg, etc)
E) some nuts/seeds
F) NONE of - sugar, dairy, wheat, potatoes, soy, white rice
7. alkalizing foods/beverages (note the difference between a food's alkalinity/acidity and whether it is 'alkalizing' e.g. lemon juice is very acidic, yet alkalizing).
8. genetic testing for methylation / sulfation / acetylation, and then supplements to correct these processes e.g. 50% of the population has the MTHFR gene defect, which leads to a huge cascade of methylation problems because of folate deficiency, which means you need to take a special type of folate called metafolin, among other supps. Another option is to just take these supplements without the tests, which many do, because the supps are generally good for you anyway.
9. toxin binders and keeping bowels moving e.g. pectasol, cholestyramine, chlorella, etc
10. probiotic enemas (many Crohn's patients have achieved full remission after using probiotic enemas after years of unsuccessful oral probiotics - the point for Lymies is that probiotic enemas can greatly help repopulate flora and help immunity in ways that oral probiotics cannot) - i'm currently searching for probiotic suppositories, which are probably safer than frequent enema use
11. herbal colon cleansing (not colonics) - if you've ever done this, you have seen that 'mucoid plaque' is real. Many Lymies cannot get better if they dont do this, because mucoid plaque is like a giant biofilm in which pathogens can hide
12. EMF neutralization - earthing mats, earthing bed sheets, etc. The theory here is that EMF radiation causes candida in the body to expand, as a defense mechanism against radiation. Many find relief when dealing with this issue - it should be done even if you don't have Candida.
13. Environmental mold - eliminate possible sources of mold in the house and/or get your indoor air tested for it
14. Indoor CO2 - get a CO2 meter to measure the CO2 in your house. You will be surprised that in a normal room with closed windows, the CO2 can easily exceed 1000 which is exceeds gvt standards for unhealthy air. This is especially bad for Lymies because we need all the oxygen we can get. This can be fixed with a permanent window fan that blows out and/or many plants (research in progress on plants - many of them emit Co2 at night - trying to find ones that dont).
15. Stand up during waking hours - to the extent you can tolerate, stand for as much of your waking hours as possible. There are adjustable desks now for just this purpose. This helps circulation, lowers blood clot risk and hypercoagulation, and is generally good for cardio and metabolic health. And if possible, take it one step furhter and get a treadmill desk, and walk as much as you can while awake.
16. Hydration/Electrolytes - Coconut Water with Himalayan Sea Salt, Alkaline/structured Water (many brands on the market), 'Moreless Drink' (google for this recipe) - this one is unique because it makes the electrolytes more 'electrically charged' and bioavailable, because of the combination of ingredients and the way they work together (see the Moreless threads on curezone for in-depth discussion on this), Colloidal/Plant-Derived Minerals added in (beware of brands with high aluminum - NOW foods is a good brand).
17. Vitamins/Minerals/Supps/Spices (huge thread on its own, beyond the scope of this post) - quick notes: Vitamin D - sublingual D3, sunlight, or a safe tanning bed (oral is less well absorbed in people with Lyme, but you can run D3 tests to check on it) .... Vitamin C - many do IV vitamin C, a cheaper way is Liposomal Vitamin C (comparing efficacy is hard to know) .... Mitochondrial supps: carnitine, pantethine, ribose, alpha-lipoic-acid, etc .... Sublingual or IV B vitamins get around absorption issues ... many use P5P in lieu of vitamin B6 because it is more bioavailable
18. Circulation/oxygenation - get an infrared sauna, get exercise if possible. Also, HBOT chambers are used by many with Lyme. While there are some Lyme patients who advocate using 'hard' HBOT (2.5 ATA and above), most use an ATA of 1.3 in a 'mild chamber'. Also, mild chambers are safer for long term use, while hard chambers can cause oxidative damage and oxygen toxicity in some cases. Also, many will concurrently use an oxygen concentrator with their HBOT machine, at settings of approx 95% oxygen, on a continuous (as opposed to 'pulsed') flow, at a flow rate of 10 LPM. Also, some people use machines with a psi setting of 20 psi (added to atmospheric pressure) as opposed to 10 psi.
19. Lymphs - rebounder, lymph skin brushing (many notice that the lymph brushing makes them nauseous, and makes their urine burn, meaning that it is working), ionic foot bath
20. Digestion - enzymes, betaine HCL, digestive bitters, ox bile, mastic gum
21. Melatonin/circadian rhythm - try and get as much sunlight as possible, or at least use solar light bulbs indoors during the day. At night, after sundown, wear 'Melatonin Glasses' especially if watching TV or using a PC. These steps will help immunity and sleep quality.
22. Herx neutralization - garlic footies, garlic enemas/suppositories, water with Alka Seltzer Gold (bad to use long term), vit B5, many many more
23. (This one will be a fight with your doctor) The current medical criteria for getting lab tests (i.e. 'clinically indicated') is incorrect. It's more important to get tested for things based on the probability that they might be abnormal, and the adverse impact of not knowing about a situation that might be abnormal. For example, your doc may fight you on getting a sleep study because it's not 'clinically indicated'. However, 20% of the population has undiagnosed sleep apnea, and for Lymies that % is probably much higher. Based on that probability, and the huge adverse impact (heart, immunity, etc) of NOT getting treated for apnea, the optimal strategy for Lymies is to get a sleep study even if it's not clinically indicated. Failure to do so can greatly hurt the effectiveness of treatment, and in some people will hinder ever getting well.
24. some Lyme patients also have pinworms, a form of parasite. This will be helped by the parasite treatments mentioned above, and you can also buy Pin-X OTC at Walgreen's. Some also use garlic enemas/suppositories for treatment. These pinworms will partially suppress immunity, so are important to get rid of. If you have hemorrhoids, insomnia, and/or anal itch when laying down at night, you may have pinworms. A new product which many use is a rectal garlic suppository with anti-parasitics in it: http://www.retailbiopure.com/Suppositories
25. Dental work - some patients find that this is the 'missing link' in getting better. Dental materials and unresolved unknown infections caused by conventional dentistry can hurt the immune system. Root canals, cavitations, mercury fillings, gold fillings, etc. See a biologic dentist for this stuff, as most dentists know nothing about fixing this stuff, or do it dangerously (e.g. improper protocol for removing mercury fillings can be harmful).
26. Klinghardt's KPU/HPU Issue - Sort of gets taken care of if you're taking the right supplements, but good to know anyway: http://www.betterhealthguy.com/kpu-explore
27. Sequence in which to treat pathogens: the 'sequence' of treatment is also important, in terms of pathogens. Generally, treat 'largest to smallest', because of the symbiosis that these pathogens have for each other in the body. From largest to smallest: parasites, then bacteria, then viruses. The reason is that, for example, Lyme protects itself from antibiotics by hiding in biofilm created by parasites, so you wont kill Lyme unless you kill parasites first. This doesnt apply to everyone, because not all Lymies have parasite overgrowth, but most do.
28. No surgery while you have Lyme - Lyme attacks scar tissue the most because scars have little to no blood supply. Surgery is contraindicated while you have Lyme
29. Other infections often missed by LLMDs - H.Pylori, PANDAS, C.Diff, etc
30. Consumption of foods/pills - 'Diversify and Randomize'. To the extent possible, you want to try and randomize your supplement schedule, so that you are not taking the same thing every day. The reason is that taking vitamins, supps, and meds (and even some foods) can cause deficiencies and imbalances. Therefore, you want to 'mix it up' as much as possible. Obviously, certain things, like antibiotics, may require a daily schedule.
31. Adrenal support - long subject, many supplements help with this (many say to do this before supporting thyroid)
32. Take the vitamins MK4 and MK7 (forms of vitamin K2) which help D3 absorption, which in turn helps mineral absorption...especially important because Lyme often accompanies dysbiosis, which lowers intestinal bacteria's production of K2 - this is a good stopgap measure until dysbiosis reduced - also, it is hard to get k2 from foods anyway. Minerals are extremely important for Lymies because they help immunity, kidney function, liver function, herx minimization, etc
33. MSM is a huge breakthrough for many people - it may cause an initial detox reaction at first, but coats the intestines and drives out parasites
EXCEPTIONS/RISKS (NOT COMPREHENSIVE):
A) methylation supplements cause potassium deficiency and potential cardiac issues
B) high dose vit C is bad if you have G6PD enzyme deficiency (get this test from your doc)
C) oral enzymes can add risk if you take Rx blood thinners
D) liver flushes can cause severe dehydration
E) (controversial) low carb diets are bad because they raise ammonia which is bad because Lyme/herxes also raises ammonia
F) supplemental calcium - bad, especially given the vit D issues most Lymies have, best to get calcium from food
G) (controversial) the filler called Magnesium stearate in supplements causes biofilm (even in non-Lyme people)
H) (controversial) Mg supplements cause biofilm in Lymies
I) Alkaline water with too high of a pH can cause alkalosis and/or affect stomach acid (i wouldnt go above 8.0, which seems to be the highest naturally occuring pH in beverages e.g. Spirulina drink). pH measuring sticks can be bought cheaply.
J) toxin binders can interfere with med/supp absorption
K) contraindications are possible with any treatment/pill e.g. sleeping pills are contraindicated with sleep apnea
L) (controversial) some docs say to that you dont want to take vit D3 so that your antibiotics become more powerful, or because Lyme causes vit D3 to give off bad byproducts (which I believe can be lab-tested for), while other docs say to take megadoses of D3. The consensus seems to lean toward taking more D3.
M) if you have mercury issues, things like chlorella, alpha-lipoic acid, cilantro etc can liberate mercury
N) "Gluten-free" on a label does not always really mean gluten-free. The FDA definition from 2007 allows up to 20 ppm. Check with www.gfco.org
O) Many people recommend coffee enemas to help along the detox process (coffee enemas open the bile ducts), but some people get very very ill with this - proceed with extreme caution
In thinking about the treatment for chronic Lyme, the biggest problem we've had patients tell us is not the treatment itself (as horrid as that is). It is the process of information gathering and deciding what to do, and when to do it. The patients we've talked to who are better said that if they had all of the information in the beginning (that they eventually acquired by the end), that they could have saved, in some cases, *years* off their treatment regimen. When we really pressed for details on this issue, we realized that Lyme treatment, as horrid as it is, is more a problem of gathering information than it is actually executing on that. PLEASE NOTE: we are NOT minimizing symptoms and herxes here. We are simply saying that the people who get better, when they take a step back, say "wow, the biggest reason it took so much longer than it should have is because no one was able to map out a *comprehensive* plan for me on Day 1 of what to do and when to do it, and i kept finding out over months and years things that i should be doing, that no doc ever told me about".
So the goal here is to make the 'core' of such a plan simple (simple does not mean 'short'). In other words, on Day 1, you know:
1. what tests to order
2. as soon as possible after that, what to take (meds, supplements)
3. the order in which to do it
4. along the way, fine-tune and change course as necessary e.g. change antibiotic strategy
5. the 'core' Top 30 list remains largely the same
6. time and effort are spent dealing with treatment execution, and not continually gathering information and realizing you were missing something over the last X months/years
Another benefit of this Top 30 List is that once you get into remission, you will want to continue many of these things for the rest of your life, to prevent re-lapse, and because they are healthy anyway and preventative for other diseases.
As you can see, the Top 30 List above does not contain sequence. We are still working on that part of it. But we wanted to get the list out there as a starting point. We are building a medical website (for all diseases, not just Lyme) that uses 'crowdsourcing' to continually aggregate all of the collective medical wisdom world-wide in patients and doctors heads, with the purpose of giving patients full transparency on medical best practices, treatment flow charts, decision trees, and other tools (even financial tools like how best to treat Lyme, or come up with a food-allergy meal-plan, on a limited budget). This will allow people to know what to do and when to do it for any symptom, disease, treatment, Rx, or condition. And to avoid missed diagnoses, mis-diagnosis, medication and interaction errors that doctors and pharmacies are not telling patients about. The end goal is to save people time, money, and health as much as possible, by knowing they have a disease as early as possible, and can cure it as quickly and cheaply as possible.
As team leader, Bill Syrjala can best be reached on Facebook.
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BetterHealthGuy.com is intended to share my personal experience in recovering from my own chronic illness. Information presented is based on my journey working with my doctors and other practitioners as well as things I have learned from conferences and other helpful resources. As always, any medical decisions should be made only with the guidance of your own personal medical authority. Everyone is unique and what may be right for me may not be right for others.