posted
In everyones experience especially those who have perhaps been "cured" and have the advantage of hindsite, would it be possible (thought perhaps ill advised)to self treat for chronic lymes? Purchase meds online for example. Before you guys tell me how dumb this could be let me explain...I have a two fold problem One, I have no insurance and LLMDs do not come cheap and I really just dont have the money. And two I do not have insurance because I am finishing up my degree and have been living off savings and grants but I will be looking to get insurance in the next month or two when I get back into the workforce and I don't want a pre-existing diagnosis to make getting insurance more difficult or perhaps impossible. So like I said could it be done? And if so does anyone have some good links for drug mix and dosage information?? Thanks so much for your opinions
Posts: 4 | From FLorida | Registered: Apr 2011
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lymie_in_md
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If you are going to self treat like i did. First it is not the fastest way to get well. And I did many things that would be frowned upon by many here. Such as MMS which you get a year supply for about 20 dollars. Also, I found using an LED cost about 1300 was invaluable. If you have a healthy thyroid, you might be able to do well self treating.
The most important tool I found was energetic testing, if you could put your faith in it and keep an open mind you could do very well. You could get to the point of not needing to throw savings away on a complicated maze of doctors and prescriptions.
Once you get comfortable with using a pendulum or biotensor or kinesiology, you can then determine a plan, for diet, homeopathy, and herbology. You can do this rather cheaply.
I would have gotten well much faster in hind site if I changed or tweaked somethings. I'm guessing your young, you don't nearly have the toxic burden I carried. Years of smoking, having 50 amalgams in and out of my mouth (i had an enormous mercury issue). So you have to put this in perspective about your situation compared to others.
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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MichaelTampa
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posted
I agree with Bob, for someone trying to manage their own care, ability to "energy test" via pendulum or kinesiology, whatever method you use, would be EXTREMELY helpful.
Really, even those with LLMD's picking antibiotics for them, this can be very helpful to help the LLMD pick the right one, and to help pick all the supportive therapies (detox, herbs, rife, whatever...). But without a LL-doctor guiding the treatment, I'd strongly encourage you to find a way to learn energy testing for yourself.
Posts: 1927 | From se usa | Registered: Mar 2010
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MichaelTampa
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posted
Regarding drug mix and amount, a good start might be Burrasano's "treatment and diagnosis guidelines" on the ILADS website. It is a few years old, and is not up on the latest. For example, no mention of Factive on there, a 4th generation fluoroquinolone similar to levaquin, which can be used to treat bartonella plus borrelia. But anyway, a good start.
I suppose hanging on this board listening to what people take for different coinfections and symptoms should at least help keep you up to date as well, in terms of what options are out there.
Posts: 1927 | From se usa | Registered: Mar 2010
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posted
Ok so....huh??? lol can you please explain "energy testing" "MMS" and "LED" at least briefly. If it helps I am fairly young (35) and aside from this unexpected issue very healthy. No other problems at all. Clean lifestyle, healthy diet, don't smoke, hardly ever drink, exercise regularly. Don't have any fillings and don't eat large fish to try and stay away from heavy metals.
Posts: 4 | From FLorida | Registered: Apr 2011
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MichaelTampa
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posted
If you google "youtube muscle testing", you will get several videos popping up that explain it. Below are a couple such links. There are a lot of subtle variations between how different people do it. The way that is right for you is the one that you can figure out to do how it works. It normally requires experimentation.
You might look for a local acupuncturist or EFT practitioner, and ask to see if they will help you learn this.
posted
Bob, can you tell me more about your experience with MMS. I have been reading about it recently, and am thinking of trying it.
What did you use it for? Were there any side effects? What dosage did you start with, and work up to? Results?
Posts: 964 | From san diego | Registered: Oct 2009
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D Bergy
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posted
I do not think everyone is suited for self treatment, but some are. It really helps if you have a third party to objectively measure results. It does not have to be a professional, but they must be engaged in the process.
The hardest thing to do is objectively rate progress, as it is slow with Lyme.
I think MMS can be helpful, but it is powerful, and not 100% risk free. People with Lyme do not always respond positively to the treatment for reasons I do not fully understand.
I think a low dose protocol over a longer period of time would be the safer way of using it.
Large doses will likely cause stomach problems sooner or later.
Dan
Posts: 2919 | From Minnesota | Registered: Aug 2006
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my personal opinion would be to stay far, far away from muscle testing and mms.
if you're going to self treat, do it by the books. burrascano protocol and maybe some additional herbs (there's a recent thread with suggestions of different manufacturers.)
i'm sure there's discussion on this board about mms. here's a link to another discussion.
as for "energy testing" or "muscle testing"... even kinesiologists will tell you that you have to be a skilled practitioner to notice a difference. i would not let myself or anyone i care about let muscle testing dictate their direction with treatment.
also, iGenex, the best lab for tick-bourne infections, won't run any tests without a doctor's order. you're pretty much stuck with http://www.directlabs.com/ if you don't have a doctor willing to order tests for you, but labcorp/quest is better than nothing.
if i were you i would post some more information about your symptoms and details of your illness, and we can try to guide you in the right direction in terms of lyme, co-infections, etc.
i would also read the entire burrascano guidelines front-to-back multiple times.
good luck.
Posts: 340 | From san francisco, ca | Registered: Nov 2010
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posted
p.s. i can't believe anyone on this forum is still advocating for the use of MMS.
Posts: 340 | From san francisco, ca | Registered: Nov 2010
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lymie_in_md
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posted
5vforest -- I personally did MMS for 9 months but at 6 drops twice a day without activation. It is very powerful but Dan is right, not everyone can do it. Here's where enegetic testing might help guide someone and possibilities. MMS is a natural antibiotic but it can affect your stomach and digestion. But ABX like rifampin can destroy your gall bladder or liver as well as your digestion. Just ask how many lymies here had there gall bladder's removed. So what really is save?
Why do I advocate energetic testing, to know when to stop a drug or supplement not just to start it. To help determine diet. I'm not sure about 5vforest, but I'm completely well without seeing doctors. I did the MMS and I did the enegetic testing I used an LED I learned about herbalism and homeopathy and I saved thousands!
As Dan said energetic testing and an objective third party would be ideal, such as nurse friend or maybe you could get involved with reiki and meet someone there who might help. A simple way to look at reiki, its method for nourishing the body with energy also very cheap and therapeutic.
Energetic testing is a personal thing, again not everyone has an open mind to do it. If you think you do, I recommend getting a biotensor like I did. You can get them for about 20 dollars. Search the site for "biotensor", you'll get a lot of hits. There are others who can point you to cheaper biotensors but this is the one I bought http://www.self-health.net/
As far as barrascano, great man but you'll need to see an LLMD and get your ABX. You can't self treat with barrascano.
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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MariaA
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posted
I don't think your LLMD visit would show up anywhere in your records that your future insurance company could find it.
For God's sake, please don't let that particular fear stop you from getting treated. I know that the expense is a huge issue, but there are a lot of weird phenomena in lyme whereby only an LLMD might be able to 'see the pattern' and find things to treat you for besides the actual Lyme, for instance. Also, some people have trouble with all the treatments, whether herbal or antibiotic (obviously more common with antibiotics, but they do work best).
I had to do a lot of self-treatment because my first LLMD didn't have very many options and was not aggressive enough, and my Lyme didn't respond to mild therapy (like one antibiotic at a time). I learned a lot in the process but didn't really start improving until I found an LLMD who was a better diagnostitian- he was able to find at least one more coinfection that the first LLMD (and I) missed.
Suggested self-education: -The Lyme Disease Solution by Dr S- -Stephen Buhner's book Healing Lyme- mostly about herbal treatment and doesn't address coinfections very well, but is a good intro to the disorders that Lyme causes.
Incidentally, I also think that MMS and muscle testing is bunk. In Lyme, muscle testing looks like it shows a lot because we have the same clusters of issues (ie you can 'find' babesia in a patient, and you might be right 60% of the time because some 60% of us may have it, for example), so people tend to become strong believers because someone gets a few of the 'basics' right just by guesswork (example: parasites, candida, adrenal issues, thyroid, are all common issues for Lymies and one could be quite amazed at getting a diagnosis of this and learning that it's correct). I'm sure it sometimes helps you focus your intuition, especially if the practitioner knows a lot about Lyme or if you're doing it to yourself and know a lot about Lyme, but I don't think there's any chance in hell that there's anything to it beyond that.
Haley
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posted
Lymie in md. I never heard that Rifampin can destroy the Gall bladder, I have only heard that about Rocephin. Do you know people that had the gall bladder removed from Rifampin? I'm on month 4 of this, that's why I ask. sorry if this is off subject.
I have self treated but only after a very long time of taking meds and knowing which med does what to my system.
My first question to you is ... do you know for sure that you have Lyme? I think it is important that you at least get the blood test. I understand the hesitation about the insurance but I don't think it would make a difference. I don't know that for sure.
Also, if you have recently been infected, you don't want to screw around and waste time, you want to get proper treatment ASAP so you don't end up taking meds for the next 5 years.
Posts: 2232 | From USA | Registered: Aug 2009
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MariaA
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posted
Rifampin doesn't have that side effect, that's probably a misremembering. Rifampin is used very long-term for other conditions such as tuberculosis, and there's even some research on it for hepatitis C (for something other than it's antibiotic effect, since hep is caused by viruses) where they give it to liver-damaged patients for months at a time. It's not that dangerous all in all.
-------------------- Symptom Free!!! Thank you all!!!!
posted
I assumed that when you said "self-treating", you were thinking of buying any pharmaceuticals via online pharmacies and the like.
If by self-treating you mean not using any pharmaceuticals because they can't be prescribed to you... good luck, you're going to have a much harder time.
Also, it may be of note that some LLMDs offer financial assistance to low-income patients. I know iGenex also offers discounted testing.
Posts: 340 | From san francisco, ca | Registered: Nov 2010
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lymie_in_md
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posted
Both rifampin and rocephin are hard on the liver. But your right I meant rocephin, but don't think that rifampin all that's great. When you take these medications they have pretty bad side effects.
It's amazing to me you think ABX is soooo save. Everything we do in treating lyme is invasive to the body. MMS or ABX it doesn't matter, the weapons we use to fight lyme can at anytime blow up in your face. When I took ABX initially it destroyed my gut flora, it took me a couple of years to recover it. ABX is really good at beating up your immune system in the process of fighting an infection.
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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MichaelTampa
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posted
For seriously self-treating, you will want to read and learn a lot for sure. I want to add one more book to the recommendations: "Insights Into Lyme Disease Treatment: 13 Lyme-Literate Health Care Practitioners Share Their Healing Strategies" by Connie Strasheim.
Regarding all the poo-poo-ing of the energy testing, it seems similar at least in a rudimentary way to the whole "chronic lyme disease" debate. Some have been brainwashed or don't have the imagination to comprehend how it could be real. Others who have experienced it have absolutely no doubt. Such is life.
There are no doubt those who do not believe lie detectors can work, or that acupuncture results are affected by where the needles are placed.
Posts: 1927 | From se usa | Registered: Mar 2010
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lymie_in_md
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Self treating is a special journey because your health is now your responsibility. If you go through this site thoroughly you'll find many folks commenting on whose a good doctor and who isn't who and who not to see. It is how we are taught to think, we are taught not to take responsibility, the responsibility for health is the doctors.
It is a brain washing as Michael says, that cause us to give up our responsibilities to our self. The difference in self treating versus as being treated is when you do go to the doctor a self treater will say based on your own research this is what I want you to do. Versus someone being treated does whatever the doctor wants them to do, even if it is purchasing and taking 10 to 20 supplements/drugs/ABX.
These doctors see you for about 1 hour or 2 charge you 2k for the office visit and based on their experience guess at what will get you well or protocol they normally use. And based on changes in your symptoms will adjust from their. And forget about insurance with an LLMD for office visits.
posted
Looks like we scared off the OP.
Posts: 340 | From san francisco, ca | Registered: Nov 2010
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lymie_in_md
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posted
I think you have to pretty strong to fight this disease. It's not the flu, It's not a tummy ache, it's not a scratch -- it's a disease as nasty as cancer. Should it be sugar coated? Or should we advise people like adults.
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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quote:Originally posted by lymie_in_md: If you are going to self treat like i did. First it is not the fastest way to get well. And I did many things that would be frowned upon by many here. Such as MMS which you get a year supply for about 20 dollars. Also, I found using an LED cost about 1300 was invaluable. If you have a healthy thyroid, you might be able to do well self treating.
Can you please explain what "LED" refers to? I've never heard of this as a lyme treatment.
Posts: 23 | From PA | Registered: Jul 2010
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