Lyme Underground is dedicated to exploring resources for helping lyme patients to get the assistance they need for healing on all levels, including physical, emotional and financial.
We know that lyme takes a huge toll on the lyme patients as well as their families and friends, as we all search for that Secret Decoder Ring that will give us that one Magic Bullet to cure all that ails us, whether it’s in the form of the latest potion or machine, or something else unique and different.
But… beware the Seeker of the Magic Bullet… there are many varmints and other parasites out there of the human variety that are much worse than the lyme buggers within you!
On this website, we’ll explore various resources, treatments and therapies so you’ll be better informed in your decision-making, whether it’s to try the latest fad that will supposedly cure you in 7 days flat, or helping you to find lower-cost options for your standard treatment protocol.
Stay tuned, and watch this site grow!
For most lyme patients, getting by (and getting well!) on a limited budget can be quite a challenge. We need to learn how to shop wisely, fight for insurance and disability benefits, and save on every purchase we make (or at least most purchases).
Survival Tactics: Getting By on a Limited Budget is a directory of resources that will help you to save money in all areas of your life, which will hopefully allow you to have some money left at the end of the month, instead of being stuck with too much month at the end of your money!
Saving money on your purchases and medical bills is only part of the story though… you’ll need to cut out unnecessary expenses in every area, starting with taking advantage of discounts, rebates, cash-back programs and reimbursements, but also including the tough-love areas of budgeting and reducing waste. Knowing where your money is going is one of the first steps towards taking control of your finances.
If you don’t already have some sort of accounting software like Quicken to keep track of your monthly expenses and categorize them for easy review, now may be the time to make that investment. Take that daily Starbucks that many people indulge in… let’s round up to $5 per cup (including tax and tip) and do the math: $5 per cup x 5 days a week x 52 weeks a year = $1,300 per year spent on just coffee, when you could easily make yourself a coffee treat at home for much less.
If you’re not ready to take the leap into budgeting tracking where your money goes, at least do what you can to save money on what you buy and reducing waste. Taking baby steps to manage your spending will help you to have more money for your medical costs!
Posted on 09. Jan, 2012 by admin.
Here we go again with major dietary changes, to see if I can figure out what is causing the still-rapid progression of MS-type symptoms (numbness and weakness). This time I’m determined to stick to the Gerson Therapy for a while, which is primarily a program of healing with foods. One of the theories of MS is that it is at least partially diet-related, so here’s to figuring out if my symptoms are somewhat diet-related or not!
At first I thought that the Gerson protocol was juice, juice and more juice, but you’re allowed real food as well, as long as you stick to the allowed foods. You’re supposed to have several glasses of carrot-apple juice per day along with at least a glass of apple-greens juice, but the rest is regular foods. Well, make that almost-regular foods.
According to the Gerson website, a typical day’s meals would include the following, in addition to the juices:
- 8 oz of freshly-squeezed orange juice
- Oatmeal with fruit sauce
- 100% rye bread with honey (still looking for this special rye bread)
- 8 oz Gerson soup
- 8 oz apple-carrot juice
- Baked potato (can add yogurt dressing at some point)
- Veggies, freshly cooked
- Fruit, raw or stewed
OK, so it’s not overly exciting, but it’s not a starvation diet either! In a nutshell, it’s a low-fat, low-salt diet with virtually no animal proteins. That means no nuts and seeds and no oils either, other than flax seed oil.
There’s a handy pdf-format allowed and unallowed list that you can download to know which foods you can eat, and which should be avoided. You can also download the Gerson recipe book for $7.50 with a lot of recipes to get you started.
To follow the Gerson Protocol religiously would mean juicing every hour, for a total of 13 times per day. For now, I’m striving for 6 times a day (5 carrot-apple and 1 apple-greens), and hope to increase that at some point. In order to do this protocol properly, you really should read their ‘bible’, Healing the Gerson Way, as well.
Here’s the theory behind the protocol, per the Gerson website:
The Gerson Therapy seeks to regenerate the body to health, supporting each important metabolic requirement by flooding the body with nutrients from almost 20 pounds of organically grown fruits and vegetables daily. Most is used to make fresh raw juice, one glass every hour, 13 times per day. Raw and cooked solid foods are generously consumed. Oxygenation is usually more than doubled, as oxygen deficiency in the blood contributes to many degenerative diseases. The metabolism is also stimulated through the addition of thyroid, potassium and other supplements, and by avoiding heavy animal fats, excess protein, sodium and other toxins.
The program also requires a lot of detox, primarily with coffee enemas, to eliminate wastes, regenerate the liver, reactivate the immune system and restore the body’s essential defenses. Yeah, I know, yuck, but it’s really not that bad. Many prefer to call these ‘reverse lattes’. It’s best to use coffee designed for this use rather than leftover Starbucks, both because it’s milder and because it maximizes the ingredients needed for detox.
To do the Gerson program, you’ll definitely need a good-quality juicer. They recommend the ultra-pricey Norwalk hydraulic juicer or the Green Star juicer, but I think the less pricey dual-stage masticating juicer from Omega is perfectly fine. Just don’t get any of the juicers with cutting discs, they shred the cell walls of the produce and generate too much heat. A good food processor would be helpful as well, since you’ll be eating lots of salads with diced or shredded veggies. Other appliances that would be helpful to have in your kitchen would be a crockpot and a good heavy-duty blender (Blendtec or Vitamix) for making your soups and other recipes.
For the 20 lbs or so of produce per day for the juicing every hour, organic produce is really a must. There are several organic produce delivery services in California to choose from if your local grocery stores don’t carry organic, but not so many for my area! At least I did find one, and they seem reasonable in cost. Some of these services will provide home delivery, and some will deliver to a location that you can pick up from.
Enough writing for now… time to juice!
Posted on 13. Nov, 2011 by admin.
Here’s my eval of USC Keck Hospital vs Cedars-Sinai for those considering a hospital stay in the Los Angeles area. I was in for therapy, not surgery, so I can’t evaluate the surgical staff or aftercare.
Rooms: Cedars is slightly better, since all rooms are private. USC has some private rooms, and doubles are often set up as privates until they start getting more patients after Tues/Thurs surgeries. Both hospitals have bathrooms inside the rooms as well as showers, with the exception of the rehab unit and possibly others where they want to monitor you in the shower. USC does have nicer furniture for visitors and for hanging around out of bed. Cedars has better TV service, with more channels as well as a free movie channel, where USC just has the basics. Both have free wireless internet.
Food: USC wins this one by a small margin. Neither has gluten-free menus. Cedars kosher menu has some decent choices, but their regular menu is mostly like mass-produced cafeteria food (which it is). For visitors, the USC hospital cafeteria has decent food at a good price (more like student prices). Cedars has multiple menus to choose from, so be sure to ask for a variety if you’re on an unrestricted diet.
Staff: USC wins this one as well. Both have a large amount of staff that has English as a second language, but the USC staff was much nicer. The techs who check vitals at Cedars are too much like janitorial staff acting like they want to clean your toilets or empty your trash, rather than checking your blood pressure. Both have noisy nurses stations, where the staff jabbers away in loud voices at all hours. Not sure which was worse on the nurses station activity, since I was fortunate to be away from most of that at USC.
Doctors: Both are good in this category, so neither really wins over the other based on my experiences. My primary works out of Cedars, so that was a small advantage there. Both are teaching hospitals, with slightly more teaching rounds at USC than at Cedars, which really wasn’t a big deal.
Pharmacy: I’ll have to call a draw on this one. Neither is better than the other, since both have their issues. Cedars takes longer to get meds to the floor than USC does, which can be a real b*tch when you need something for pain. USC takes twice as long to do IVIG infusions, and doesn’t do the same prep as Cedars does with IV hydration prior to the IVIG, which may mean massive headaches from dehydration.
What both should fix: Both hospitals have an overabundance of maintenance staff in and out of the room carrying lots of nasties from room to room on their shoes. One guy to empty the room trash (in the middle of the night!), one to empty the bathroom trash, one to empty the soiled linens, one to clean the bathroom, one to bring toilet paper, one to replace boxes of gloves… on and on, with a never-ending parade of unnecessary dirty feet all hours of the day and night. Oh, the worst thing at USC was that the girl replacing the gloves opened the box of new gloves and crammed in the remaining gloves from the old box into the new box using her bare hands. UCK. Made me not want to have those gloves touch me, especially since I don’t remember seeing her use the hand sanitizer first. IMO, people probably get MRSA and other diseases from hospital stays more from the never-ending parade of dirty feet than from touching the hands of doctors and nurses.
Overall: Both hospitals are good, so I’d return to either one of them without issue. Well, other than the fact that the neuro I was using at Cedars turned into the Wicked Witch of the West on steroids, that is.
Day 2 of the 2011 ILADS Lyme Disease Conference was truly amazing! The sessions on integrative care and environmental issues are two of the must-sees if you’re planning on buying any of the recorded materials. Steven Bock, MD spoke on integrative medicine as it relates to lyme disease. Here of some of the highlights of [...]
The ILADS Lyme Conference was available to everyone via streaming video today, and will continue tomorrow. The streaming video is covering the primary presentations as well as some of the breakout sessions of the conference. Not all of the presentations were available via the video stream today, some got cut off (like Burrascano’s session) and [...]
Posted on 12. Sep, 2011 by admin.
Most of us lymies are on a tight budget when it comes to medicines, herbs and supplements. iHerb is a discount vitamin company with great service and heavily discounted prices on most supplements. If you are a new customer to iHerb, use coupon code ROP915 to get $5 off your first order, with no minimum [...]
Last week, the rehab doc gave me a prescription for a month’s worth of PT, which is a good thing, but geez, sometimes I wish the PT people would remember that with lyme, I have MS-type symptoms instead of just recovering from an injury or surgery. Seems it’s hard for them to differentiate, so they [...]
Posted on 10. Jul, 2011 by admin.
Stanford University is seeking participants for its new study on lyme disease. Text from their flyer (courtesy of CALDA) is below: Immune Responses and Symptoms in Lyme Disease Patients and Healthy Controls Stanford University Are you interested in participating in a research project at Stanford University researching Lyme disease? You could be included in this [...]
After 17 long days at the Death Star (aka Cedars-Sinai), I think I’ve got this system figured out… Here are some tips in case you’re facing a long (or short) hospital stay at any time in the future. Surviving on Hospital Food (blegh…) Some hospitals actually have decent food, but Cedars-Sinai has food that is [...]
Seems there’s a lot of confusion on how to file for SSDI… What information to include, how far back do you go with medical records, how many doctors do you list, which diagnosis do you stress (MS, ALS, Lyme, CFD, etc), and finally, what qualifies you for SSDI in the first place. SSDI is for [...]
LymeAid 4 Kids is a grant program designed to help children who are uninsured or underinsured get the medical care that they need to treat lyme disease. This fund was developed with the help of author Amy Tan in 2004, and is supported by donations to the Lyme Disease Association. For purposes of the grants, [...]