I wrote this message for Aherantoxologist and then I thought you might find it interesting also, alisaun.
I was affected by your story and wanted to share what I've learned after dealing relatively successfully with managing a severe Lyme condition for sixteen years. I do this hoping my experiences will help you and that you in turn will be able to help others.
I don't really relate to all the symptoms you have described so I have no idea if what you are suffering with is Lyme disease or from the various other parasites that apparently accompany it. My symptoms did involve headaches, foggy brain, sandy feeling in eyes, pains and stiffness, coming and going intermittently in various joints starting with the small finger on my right hand and progressing through all other joints including toes, ankles, shoulders, neck, knees, hips (not elbows or jaw so far though), flu symptoms with all that entails from cramps to the "runs" and extreme fatigue, neuritis inside arms, hands, ankles, feet, legs, back a painful type of red rash sometimes in armpits and other humid spots. On top of that before I found the solution I've written about here a generally miserable and very sick feeling throughout every part of my body.
The solution I've found makes me feel almost normal most of the time as long as nothing interferes with the tiny bit of alternative medication involved. There are no harmful, addictive or mood altering substances involved such as much of what the pharmaceutical industry offers.
It is a bit of a long story because I don't want to leave out anything that might prove useful for you or others you may pass this on to.
Bitten by something which left me with a perfect thin red circle centred on the exact center of the back of my heel in June 1991 at a KOA campground I asked advice from an elderly nurse familiar with the area. It was the unusual shape of the rash that triggered me to ask advice - I thought I must've been bitten by some sort of spider. She told me that the rash indicated I'd been bitten by a deer tick and I might develop Lyme disease as a result. Awhile later after becoming afflicted with a myriad of symptoms I consulted an older physician at a clinic in Phoenix, Arizona. He confirmed that all the symptoms I was suffering were consistent with someone with a 10 year Lyme disease affliction.
Back in Montreal, Canada when my suffering became so great that I was willing even to undergo Antibiotic treatment (which I had long before decided to avoid at all costs) I asked to be tested at a hospital in Montreal in the summer of 1992. To my amazement I discovered that the medical system in Canada gives a test which shows if you have antibodies indicating Lyme or not. If you do have the antibodies (which I did) you are informed that there is a 50% chance that your own immune system has already destroyed the invader and so there will be no more testing done. Twice more between 1992 and 1999 I was tested using the same test and each time I was given the same answer. Once I was tested at one of the leading clinics for tropical diseases in Montreal at the Montreal General Hospital but again they used the same test and informed me that they didn't "think" I had Lyme disease. The fact that a US doctor had diagnosed this didn't seem to mean anything to them.
In spite of all this I was very fortunate to find a General Practitioner in the summer of 1992 who was also into Alternative Medicine and she prescribed a homeopathic remedy for me, which helped a lot. However, I discovered that if I stopped taking it for even one day I became extremly ill and also felt symptoms of withdrawal (which I recognized from attempts to quit smoking - finally successfully).
Then I became even more fortunate when a person trying to get me involved in a Multi-Level Marketing Scheme (unsuccessfully) described a herb called Echinacea as having blood-cleansing properties. For some reason I started wondering about this herb and studied it in more depth and discovered that the Native American Indians have used it in their medicinal tradition as an antidote to poisonous snake and insect bites. I tried it right away and found that it was as successful as the homeopathic remedy but did not give me withdrawal symptoms if I stopped taking it for a short time - and so I adopted this as my method of managing this condition.
I used the Vogel/Bioforce brand for a couple of years and it did a good job of keeping the symptoms at bay if I maintained a small dose once a day. A woman who identified herself as a "herbalist' whom I met in a small health food store in a small Ontario town during a trip, had warned me that taking Echinacea over a long period of time could "burn out" my immune system. So, I chose to take only the dose recommended on the bottle - 15 to 30 drops. On that bottle it stated that taking more than that at any one time does no more good (nor harm) than simply taking that small amount. I have since been taking about a half of the length of the typical squeegee ended tube that comes in the small sized tincture bottles and that is generally sufficient.
One year I purchased 1000 ml of the Vogel/Bioforce Echinacea to reduce the expense. I gave some away to a good friend. When this batch ran out, I purchased a new batch of 1000 ml, however, after using this new batch for almost a month I had become gradually very ill (and hadn't realized it was the return of the Lyme disease as my condition worsened to the point where I was having difficulty waking up and getting through my day at work. It was a close friend and co-worker at a non-profit project I was running, who was staying with me, who made the observation that my deterioration had begun shortly after I'd started the batch of Echinacea. Fortunately the friend to whom I'd given some of the first large batch, had not used up the amount I'd given and returned it to me, and once I started taking that the symptoms subsided after a few days. Vogel/Bioforce insisted that there was no change in the way they were producing their product but did agree to replace the new batch with still existing bottles of the same batch number I'd been using before which I'd found in a local health store.
I stopped using the Vogel/Bioforce brand after that since I did not want to take a chance on a repeat of that situation and I finally found that a local Quebec brand called "Clefs des Champs" was always very dependable. I have no connection to that company in any way other than to understand that it grows its herbs in the Laurentian Mountains of Quebec, however I was first attracted to it because of the rainbow colored flowers in a field that adorns the bottles, and whenever I've been able to get it, it's been effective. That's been more difficult lately as the larger manufacturers seem to be overtaking all the smaller ones, unfortuately. Eventually I started growing my own Purple Coneflowers and making my own tincture using Apple Cider Vinegar as a base. I've found that when I make my own tincture, it is as good or better than any I've purchased and is without the alcohal taste which I don't like, and as long as I keep it refrigerated it maintains its potency very well. Unrefrigerated however, it loses its potency quickly. One batch I made with high quality Vodka and kept sealed in a dark cupboard for a year - had deteriorated during that period so as to be much weaker and less effective than the refrigerated version in Apple Cider vinegar.
The way this works for me is that once a day I take the small dose of the equivalent of about 30 drops of a dropper that has a very small hole - or as I described above about 1 1/4 " of the tube of the rubber ended dispenser that is inserted into the small size tincture bottle. This keeps me in a state where I'm sort of pre-Lyme. If I miss one day - I immediately get flu symptoms (stomach cramps and the "runs") followed by the fatigue, "sandy" eyes, foggy feeling in my head just behind my eyes, definite pain in my joints and sometimes it first starts with a patch of "rash" that appears almost like a "yeast" rash (except "yeast" rashes are not painful with a feeling like being roughly scraped with "cutting" sandpaper if the skin rubs against anything) in an area of my body that is a bit humid. All of this happens very quickly if I neglect to take a dose or if the Echinacea I'm getting is deteriorating, and sometimes it seems to be caused by becoming overtired or by having severe stress or another infection of some sort - even spending some time in a high electro magnetic field can do it.
The good news about all that is that as soon as the reason is figured out and a couple of doses (two instead of one for a couple of days) of a good supply of Echinacea is taken it doesn't take too long for the other symptoms to gradually subside.
One other thing that helps against fatigue (caused by anything) is made from the bark of the pine tree. The best source I know for this is a substance whose actual official name is proanthocyanidine which was originally produced under the name pycnogenol) I purchased this for years under the name pycnogenol (in 25 mg tablets) from several manufacturers such as SISU, and Dr. Martin, and most of the major labels. For awhile I've only been able to find it in a product produced by Martin Clinic under the brand name: Clinical Gold Series - Navitol - and includes other substances as well (each tablet having 30 mg of Pine Bark Extract - which is the most important ingredient). According to the bottle it is distributed by Maximum Life Nutraceuticals at 754 Falconbridge Hwy, Unit 2, Sudbury, Ontario Canada P#A 5X5. Their web site is http://www.maximumlifeproducts.com
and the phone number is 1-866-660-6607.
I lost my Echinacea garden spot a couple of years ago and have been again depending on mass produced Echinacea and have found most brands to be effective so far. I do avoid the ultra mass produced versions such as those at Costco so I have no way to know if they are OK, but I did venture to try a Vogel/Bioforce product again last year - Echinaforce which was described in such a way that it sounded as though it should be much more powerful than Echinacea by itself. It was also quite a bit more expensive. However, once again I was disappointed, when as soon as I started taking it the Lyme symptoms returned.
Later during that first year-1992- a person living in the New England area with whom I connected through a Lyme Support group gave me a great deal of background information. This person had been struggling with Lyme for a number of years and was a supportive member of several Lyme, Fibromyalgia and Chronic Fatigue Symptom support groups. This person whom I will call "Jamie" (as it is neither male nor female) had been given the in-hospital Antibiotic treatment twice. Jamie told me many things as he/she had many years of experience and had learned a number of not generally known facts about the illness.
I will list some of these things below:
1- Doctors from Germany were imported to US after ww2 and worked in a lab on a small island off the coast of Lyme Ct where they modified ticks which had been imported from Europe. In Europe the illness had existed for a long time however it was a mild illness which was not as debilitating as the form which has become prevalent in North America. It is believed that this is because the spirochete was modified to permit it to be stronger - perhaps joined with other parasites (none of these details are clear to me). This matter was some sort of experimentation possibly to add to the "germ warfare projects" in the US. Once the work had been completed the resulting new form of parasites were given homes in deer ticks and these ticks were released into the body of water separating Lyme from that island - Jamie told me the name of the island but I don't remember it.
So began the infestation of North America with this new, very potent, form of the illness passed on by spirochete infected ticks which we now know as Lyme. Lyme - for Lyme Ct where the first cases were noticed.
2. Jamie had discovered that whenever he/she could convince the members of one of the support groups mentioned above (CFS, Lyme, Fibromyalgia) to get a valid Lyme test as a group - at least 70% of the group (no matter which one) tested positive for Lyme.
3. Jamie's experience with in-hospital Antibiotic treatment (both times) involved about three weeks of treatment with two different powerful Antibiotics leaving Jamie terribly ill due to the destruction of so much of the immune system and with a terribly strong overgrowth of yeast. The Lyme symptoms however were gone at the end of the treatment. Unfortunately in both cases within three weeks of returning home from the treatment the lyme symptoms gradually returned to become as strong as ever within a short time.
4. Jamie told me that it seemed that especially with children if the Antibiotics were given immediately after the tick bite - it "seemed" that the infection was destroyed, however it didn't seem to be the same for adults or for anyone who did not identify the problem and begin treatment within hours of infection.
I have since learned more. I've learned that there are many serious illnesses that may actually be the result of infestation of certain organs and/or glands by the spirochete that causes Lyme and/or the other parasites that apparently come along with it.
I've also been informed that the pharmaceutical industry has such gigantic control over the medical profession that they greatly influence what the medical practitioners themselves understand and believe. The symptoms are regularly misdiagnosed and prescriptions for expensive "band-aid" treatments for what is thought to be symptoms of arthritis, rheumatism or rheumatoid-arthritis, fibromyalgia, chronic fatigure syndrome, and that good, old, "standby" depression. So we apparently have thousands of people misdiagnosed and frequently seriously addicted to a variety of drug treatments which aren't actually doing anything to help them other than to distract them from and, if they are lucky, to "mask" the symptoms and alleviate their suffering a little.
I was sorry to read on Cure-Zone today of how much this illness has advanced lately - although I was relieved that at least there the facts are at least being published, however I feel bad for the majority of people suffering from these symptoms who don't have at least the understanding of how to keep it at bay, the way I've been fortunate enough to have discovered.
I hope this will help you. Please let me know if you try this and what the results are for you - either way.
I've written the most pertinent treatment information on Lyme-Net a couple of times over the years and each time the moderator took an extreme and intense stand against the main treatment method I use, although some of the members of that group wrote to me privately to say that they also had found the treatment to be effective and shared their experiences with me. The reaction of the moderator (each time it was a different person) convinced me that the site is being maintained at the expense of the Pharma companies. I won't put this information out there in that way again because the extreme reaction mounted in those two situations against this helpful method could be more harmful for those who could benefit than not mentioning it. They might find it on their own and not be prejudiced against it by the misinformation.
One doctor connected to that site who I wrote to responded that Lyme disease sufferers are allergic to alcohal and discounted Echinacea tincture for that reason. I have found that the version suspended in another substance - I think Glycerine - wasn't as strong as it is in alcohal or refrigerated apple cider vinegar. The type in the little glass vials (10 ml ampoules are suspended in purified water with natural orange flavoring) I've found to be just as good as the bottled type and can be used in the same quantities I mentioned above but it also must be kept refrigerated as it deteriorates quickly when opened. I break it open and empty the vial into an empty Echinacea bottle which I've cleaned with Hydrogen Peroxide. This is actually the least expensive way to purchase it, since each 10 mL ampoule lasts about a week and the brand I get from a local Quebec lab sells for $12 to $14 for 3000 mg.