I was sick for about 6 years, with incapacitating exhaustion and brainfog (and insane sleeping problems, needing at least 11 hours and up to 16 hours a day of sleep, alternating with insomnia at odd times).
I was diagnosed with Lyme in 1998 but got the CDC guidelines preached at me by ignorant doctors at that point- my antibiotics back then helped in the short term, but only toward the end of the 30-day treatment, and I had to take them several times before the pain symptoms stopped coming back (this was bad treatment, with something like two months off antibiotics in between each course 'on', since the doctors didn't believe in long-term antibiotics and believed that Lyme is cured after 21 days on antibiotics).
I was better for a year and a half and then just dramatically crashed in the fall of 2000, and have been struggling to figure out what was wrong ever since.
I didn't have it as bad as some of you, at least not most of the time. I never developed serious depression (at least not more than can be expected when you are severely ill) and I didn't have some of the more crippling symptoms some of you have. But I was definitely disabled by the 6 years of this illness, and sadly didn't realize it was just long-term Lyme because my ignorant doctors back then told me there was no such thing (or that if a Lyme patient didn't get better, it was due to 'some poorly understood autoimmune condition like fibromyalgia')
Last winter the info on the Internet seemed to be a lot better than the last time I checked, and I realized that longterm antibiotics might be the ticket. I was lucky to find a good LLMD (a friend of friends) who practices the Buhner protocol and various detoxification treatments, as well as conventional Western drug treatment. I've had incredible success with my Lyme treatment in the last 6 months- I think i was one of the easy cases, which makes it so much more frustrating that it took so long for me to figure out it could be treated- and I wanted to post some info about what I did, when.
[ 21. December 2006, 10:38 PM: Message edited by: MariaA ]
Posted by MariaA (Member # 9128) on :
antibiotics : I started out on doxycycline for two and a half months or three months, which resulted in noticable improvement in brainfog at about 10 days (see below) and a good increase in energy at about 4 weeks. I've been incredibly sick for about 6 years but my LLMD didn't think I had any coinfection symptoms (nor did mine match anything I"ve read about the common coinfections). I think I turned out to be a pretty straightforward case. I later switched to azithromycin due to doxy nausea.
neurotoxin absorbants: My LLMD also insisted on Chlorella and/or bentonite clay (yech- tastes like buttery mud!)- I had a choice of either one- to help absorb toxins (from dead bacteria or from the bacteria's normal waste, I can't remember which one the theory is but I think it's the waste they secrete).
He also gave me a prescription drug that's not designed for this purpose but had been helping some of his patients- welchol, an anti-cholesterol drug that in this case helps absorb toxins from the Lyme.
I think I really felt the difference when I didn't take it or chlorella/bentonite for some reason for a few days, and I"m pretty sure I"m not hypochondriac in general so I feel like the dramatic effect was very real.
The idea behind these was that it was supposed to reduce brainfog. I felt like a significant amount of the brainfog lifted pretty quickly, maybe even before my energy came back- I think I felt a pretty good difference in my clearer thinking between 10 days and three weeks into the doxy and welchol/bentonite.
Cortef and siberian ginseng He also prescribed tiny amounts of cortef twice a day. I was taking 2 1/2 mg at a time twice a day, much less than is usually prescribed for adrenal issues. This was for 'adrenal exhaustion' or something similar. I was also taking siberian ginseng for the same reason but was never consistent about that. I found it easier to handle pills than to deal with liquid tincture and I kept running out of the siberian ginseng tincture so it was hard to maintain.
After about a month and a half on the cortef I felt like it made me feel a little bit edgy and felt like I no longer needed it (I was making visible milestones in improvement, such as being able to exercise or take walks without falling over with exhaustion), so I stopped taking it. I have heard from other medical pros that with larger dosages of cortef this is dangerous to do cold turkey. I didn't feel any negative impact when I stopped, and my energy and ability to handle stress had been gradually improving.
Buhner herbs: I went to taking both doxy and the Buhner core protocol somewhere around a month into the doxy/cortef/chlorella/welchol, and kept upping the amounts of Buhner herbs as directed in the book for a couple of months. I think at that point it really, really helped my improvement. I was able to function well enough to organize a pretty sophisticated conference during this time, something I couldn't have done anywhere NEAR as well several months prior, and I didn't really have any major energy crashes afterward, which has been a real hallmark of my Lyme- I've able to function well enough to work occasionally but prior to starting treatment, I would always pay for it by sleeping 14 hours a day for about a week or three weeks afterward. I feel pretty sure that the Buhner herbs had something to do with my improvement towards the end of the 2 1/2 months of me taking them.
I was mostly ordering the supplements or herbs from www.myvitanet.com
pain: I've had fairly distinctive neck pain (in the vertebrae, not muscles) for the entire illness, and it disappeared after about a month and a half on treatment. I've also had some odd, moderate-but-very-aggravating 'skin' pain (feels really surface, like I"m imagining it, and it makes me irritable) on and off the entire illness. This also disappeared somewhere this summer, maybe two months or three months into treatment.
other physical symptoms: I've had some ligament/tendon issues that have been really hard to resolve over the past few years. Oddly, all of this resolved four months into treatment. I know Lyme's been cultured from tendon tissue (Buhner's book discusses what it's doing there- turning it into jelly apparently) but I"m not sure if this was just coincidence or has something to do with Lyme treatment and the Buhner protocol herbs.
Acidophilus and yeast infection: Due to the candida that antibiotics cause, I was also taking a LOT of acidophilus (mostly as home-made yogurt, kefir, large anounts of homemade sauerkraut and kraut juice from a nearby sauerkraut manufacturer that a Lyme friend of mine worked at, and storebought rejuvelac (the most potent acidophilus-containing thing I've found). These fermented foods probably helped even out the yeast infection side effects of the doxy a little, and I'm not sure if they counteracted the core protocol constipation as I barely experienced that (my homemade kefir is a little on the scary-rotten side for most Americans I think, I"m a big fan of lactobacillus fermented foods such as yogurt and kraut. For more info on making this stuff, see Sandor Katz' awesome cookbook 'Wild Fermentations', which covers fermented foods, and includes lots of stories about his gay commune, in case that offends any of you).
I also used boric acid capsules as suppositories for vaginal yeast infection control (you have to make them yourself, and they're poisonous if a child gets hold of them or you mislabel them and they make it into your pile of daily pills, so be very careful- google this practice for more information, some small studies on safety come up)
Ultimately all of this wasn't working well enough to control vaginal yeast (I"m exceptionally susceptible to this for some reason) so I eventually had to take systemic antifungal drugs (first nystatin regularly for a few weeks, then stopping the nystatin and taking fluconazole instead, once every few weeks and only when the symptoms got out of control. Fluconazole has some scary warnings and I felt leery of taking it very often. I should have gotten some blood tests done to make sure it wasn't causing any changes).
I continued to take acidophilus in the form of foods, as much as I could handle it. I didnt' feel like any of the storebought refrigerated pill forms worked as well as storebought or homemade (yech) rejuvelac, which I consumed in much larger quantities than suggested on the bottle. I thought that it tastes better at room temperature, by the way. I tried several forms of pill acidophilus and didnt' feel like any changes happened, whereas the rejuvelac changes bowel movements for the better, frankly (sorry- too much information!) and has sometimes made me feel more energetic when taken regularly.
azithromycin instead of doxycycline: I eventually went to Azithromycin instead of doxy because of too much vomiting from the doxycycline (core protocol herbs taste SOOO NASTY on the way back up!!!!!!!!!!!!) and because I have a stomach ulcer which seemed to be aggravated by doxycycline. This was about 2 1/2 months into the antibiotics and a month and a half or two months into the Buhner protocol. I continued to take the welchol and the chlorella or bentonite.
I also started the nystatin somewhere around the same time as the azithromycin. I was converned about the nasty die-off that would occur when I started on the antifungals. The LLMD told me to make sure and take chlorella due to various stuff that dead candida (yeast) can release, which the chlorella is apparently good at absorbing.
A few weeks later (probably three and half months into treatment, and about two months into herbs) I noticed that I was unexpectedly more tired than expected and that my progress/improvement had plateaued. I assumed that this had to do with the nystatin/candida die-off, which is reported to have similar symptoms as Lyme- tiredness and brainfog- but I had no success doing anything about it with more chlorella or acidophilus. I decided to eliminate as many of the treatments as I could to see what the cause was. I unfortunately stopped taking the Buhner herbs, though my LLMD didn't recommend this. I was also traveling and it was REALLY hard to keep up with the large handful of horse pills three times a day. I was off the herbs and welchol (the welchol isn't supposed to have side effects but is $200 a month at Costco, and I just ran out and didn't feel like I still needed it) and continuing to take only azithromycin for two and a half more months until I figured out around Thanksgiving that tiredness is a side effect of azithromycin. I stopped taking it for the past 10-12 days and virtually ALL my normal PRE-Lyme energy has returned, which feels like a miracle cure to me.
I think I was actually responding well to the antibiotics but the improvement was masked by side effects of azithromycin after a couple of months on azithromycin, with candida or other 'stuff' maybe masking the improvement I was otherwise making. I felt like the tiredness i was feeling wasn't the same as the exhaustion of Lyme itself, and thought it had something to do with candida or one of the drugs.
I'm not trusting that I'm actually "cured" or that this is permanently managable until I stay high-energy for a few months and find a 'normal' 40-hour work week routine that I can maintain (I work for myself so this is all up to me luckily).
I'm going to go back on the Buhner herbs this week under the LLMD's direction and see if this keeps it in check. He originally speculated that this could take 6 months of antibiotics and a year of herbs, or could be controlled by herbs alone (but that it would take longer to see improvement), so I feel like I"m pretty much on track.
[ 21. December 2006, 08:19 PM: Message edited by: MariaA ]
Posted by lymeHerx001 (Member # 6215) on :
phew ,, he need a \way to sumarize things on this group
ive been guilty too. Thats what the lyme does. Makes ya ramabble about nothing, and when You read something that is something you ramblle it in your head adn think its something.
Briain Fog confussion all the way around,,, thats the toughest to get rid of for me. Wish it would though so I can be in a chair with drugs in my verins but my head doin the work............bz
Posted by MariaA (Member # 9128) on :
I know, that's the hardest thing about these kinds of disabilities to explain to people. They assume that because you're not working, that it means you must have lots of free time to yourself to do what you want, and it's really hard to explain to healthy people that it's not really 'free time' when you can't use the brain or concentration.
Posted by MariaA (Member # 9128) on :
Anyway, sorry about it being so long, I assume it's got some details in it that someone will find useful becuse I haven't heard of some of this before in reading here (like welchol).
Posted by clairenotes (Member # 10392) on :
Thanks for sharing all of this information. It does take awhile to read, but I really appreciate being informed of someone's success and especially what their protocols were. Unfortunately, we have to do a lot for this illness on so many different levels. Glad you got results for your efforts in such a short time.
I have heard many good things about rejuvelac. It is highly advocated by the raw foods people who are very health minded. Lots of reports that probiotics are not doing what they should, entirely. Could you provide your recipe for making rejuvelac?
I like the fact that you included so much detoxing in your protocol with the whelcol (sp?) and the chlorella, etc. Somehow, I think that is a really important factor in all of this. How much chlorella do you take?
Perhaps one day we will be healthier than when we started.
Claire
Posted by luvs2ride (Member # 8090) on :
Hi,
I no longer suffer the brainfog and actually found your post very well written. I really appreciate you sharing your treatment step by step.
I hope your wellness is permanent.
Luvs
Posted by MariaA (Member # 9128) on :
thank you.
Homemade rejuvelac is a little bit bad-tasting. rejuvelac tastes almost vinegary (sour, without the 'rottenness' of vinegar) but when making it yourself you can get some off flavors in it from other bacteria. I suggest trying small amounts daily till you know your stomach can handle it (by the way, from a safety standpoint you can't really go too wrong with lactic acid fermentations (yogurt, kraut, rejuvelac, miso, etc) provided the correct bacteria that make the product have taken hold because the lactobacillus creates so much acid that it deters other kinds of dangerous bacteria growth, but it can still taste a little weird) .
NOw that that's said, I can buy a version here on the West Coast thats' in the health food stores that's about $3 a quart and less odd-tasting, but I believe they don't sell it in Colorado (I was there this summer).The type I buy in California is made by The Rejuvenation Company.
To make your own, you basically make wheat sprouts (easiest grain in the world to sprout by the way) and then let them ferment in water. They'll form acidophilus. here's a recipe: http://www.rejoiceinlife.com/recipes/rejuvelac.php
Maria
Posted by MariaA (Member # 9128) on :
quote:Originally posted by clairenotes: How much chlorella do you take? Claire
I don't remember exactly but i think it was about 3000 mg- my last bottle was NOW brand in 1000 mg pills and I"d take one with each round of herbs (ie 3 x a day), upping it to more frequent use when I was taking anti-candida medications. That would be somethign to ask an LLMD, I can't remember what mine originally suggested. I've heard also that chlorella is supposed to give some people gas but I didn't notice any distress from it.
Posted by TerryK (Member # 8552) on :
I really wanted to hear the details too. It really helps to know what works for others.
You would be a good one to write to the IDSA about their guidelines since you are a classic case of someone who had lyme - recieived brief treatment via their guidelines - was ill for many years and have responded beautifully to abx and other treatments that I'm sure they would deem "not advisable".
I'm so happy for you. I hope you remain well but as you already know, it's good to be vigilent. Terry
Posted by tdtid (Member # 10276) on :
I too am appreciative that you took the time to give us detail in everything you did to get you where you are.
I know we are all different and what works for one, doesn't for the next, but I do like to hear about all the options since this sounds so experimental and since there is no "magic bullet" yet we can take and be done, we all are experimenting.
As far as the "rambling", hey, to me, it sounded normal. Even when I think I'm having a fairly good day, I'm told I write a novel to a yes and no question. Hehehehehe
I think part of that is that I KNOW I have brain fog and you want so desperately to get your point across. BTW, I think you broke it down as to why you were doing what, VERY well.
Thank you for sharing with us and I do hope you will keep us posted on the progress on this path.
Cathy
Posted by BorreliaBrain (Member # 7603) on :
BRILLIANT POST!!
(sorry to shout). Thanks sooo much. It was cogent and well-written and it's soooo nice to hear about successes for a change. Way to go.
I found this very helpful, and will probably try to copy a lot of what you did. I'd been sitting on the fence about going back to the Buhner herbs because it's sooo many pills to take (and Andrographis is bitter) - but I guess they work.
Thanks so much for posting.
BB
Posted by *Daisy* (Member # 9593) on :
Glad you are feeling well. Thanks for your story.
Posted by MariaA (Member # 9128) on :
quote:Originally posted by TerryK:
You would be a good one to write to the IDSA about their guidelines since you are a classic case of someone who had lyme - recieived brief treatment via their guidelines - was ill for many years and have responded beautifully to abx and other treatments that I'm sure they would deem "not advisable".
Yep, I"ve been thinking along the same lines. I'm an activist about another issue, and the recent October IDSA guidelines have me pretty upset and thinking about what to do of my seemingly 'easy' treatment.
However, the IDSA itself doesn't seem to be listening to ANYONE ( I should start following the news on the CT attorney general's case, that's the only good news I've heard out of this epidemic).
I'm curious about other ways that my story might be useful. Regardless of whether I'm 'permanently' cured or not, it's been a dramatic turnaround with few side effects, and I think at this point I could easily work a normal job and manage this illness. I'm curious if I can get myself inserted into some other Lyme activist effort.
If there's still talk about a national march/protest I think I'd be interested in helping with the organizing.
Posted by lymedad (Member # 8074) on :
I found all of your posts easy to read, informative and well written.
Thank you for all you've provided.
Posted by clairenotes (Member # 10392) on :
Thanks for the information and website for rejuvelac. I wanted to see if it was similar to the 'recipe' that I have. That is great that you can purchase it already made, because I know it is somewhat of a process.
Claire
Posted by MariaA (Member # 9128) on :
Thanks everyone.
A few more comments:
Buhner book in general: It sounds like the herbs work well for many people, but I've heard that you have to wait a LOT longer for results than if your case responds to antibiotics alone, which is kinda common for herbal treatment of serious diseases. Dont be surprised it it takes a long time. Of course Buhner claims that some of the herbs help, in conjuntion with antibiotics, some people who didnt' respond well to antibiotics alone (and he explains the action by which this happens).
The great thing about his book is that he constantly references medical studies to explain the disease's progression and why a certain modality is recommended- its useful for understanding the disease and how this organism works, even if you don't decide to do the particular protocol, I think. It's a good jumping-off point to further reading and critical reading of info on the Internet (or a critical reading of bad information coming from an anti-LLMD doctor for that matter, or bad information coming from other kinds of quacks, which unfortunately our disease attracts)
In the past few years I was absolutely paralised by all the conflicting information on the Internet, and I felt lke I didnt' have enough energy to really do my research. A good LLMD is of course invaluable for helping patients navigate the quackery out there- there are so many suggestions about nutrition, suppliments, and other treatments that it can be really overwhelming to those of us with brainfog and exhaustion.
advantages and drawbacks of herbalism in general:
I've worked on other health issues of mine with herbalists (I grew up with herbalism as my main healthcare actually) and it's very important for those who are new to herbs to understand that it can be very slow (though I found I had a 'honeymoon period' with some strong herbs where I felt increased energy for the first week then slower progress). Just dont expect miracles at first.
Usually the tradeoff with herbs is a. fewer side effects than stronger Western medicine.
b. complimentary actions of multiple chemicals found in the whole herb, which help balance out the side effect of the active constituent.
In many cases people traditionally chose these plants and not others as medicine because of these complimentary actions, not just because of 'the active ingredient' (a simple example of these complimentary ingredients is dandelion, used as a diuretic (this isn't a Lyme thing btw)- the plant happens to be high in both a diuretic constituent and has high potassium content which is exactly what you need if taking a diuretic). This is why we continue to take herbs rather than just having a laboratory make 'active ingredient' pills, and it's something that may not be clear to those familiar only with a Western medicine approach to medication.
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I hope you remain well but as you already know, it's good to be vigilent.