AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Has anyone tried multiple approaches to treatment? ILADS - Non-ILADs - Alternative?
What order did you try them in?
What is YOUR PERSONAL OPINION as to where you derived the most benefit in your treatment?
Have you been in remission yet? When & for how long?
Please keep in mind that everyone will be posting their PERSONAL OPINIONS, so there will be no reason to argue with each other.
PLEASE be kind to each other (as I'm sure you all will. )
Thanks in advance.
Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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luvs2ride
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Member # 8090
posted
Hi Alig,
I began my treatment with homeopathy. It totally cleared up my mental confusion, shortterm memory issues, stiff neck and migraines.
It did not help my joint pain which became significantly worse over the 5 mths I worked with this doctor. Today, I believe too much die off was occuring with no attention to detox.
Next, I was diagnosed RA. I rejected the traditional RA drugs. I began a low dose abx protocol wherein I took 300mg weekly of minocycline. I felt this would not conflict with lyme.
I also began working with an integrative doctor to change my diet, clear heavy metal toxicity, heal leaky gut.
Diet was #1 source of improvement for me with IVs of glutathione running a close 2nd. My RA dropped from a high moderate to a weak positive during this time.
05/07 I was bit again and relapsed quick and hard. Since the infection was new, I ran to an ILADS LLMD for abx. I was surprised to hear her say "It has been my experience that until we heal the gut and clear parasites and worms, there is no point going after the lyme".
She started me on abx and some supplements for DHEA, Adrenals. Tests found H. Pylori and the abx for that cleared up all my symptoms. Tests also showed Babs, but so far I am not on the traditional Babs treatment. She did give me some herbal IVs that clear parasites and she said this would reduce the amount of time I would have to be on Mepron. All my Babs symptoms went away and so far, have not returned. Not sure when I will begin Babs treatment.
She tried to start me on Methotrexate and Enbrel (RA drugs) to prevent joint damage but 3 mths later I developed Tonsilitis so MTX and Enbrel had to be stopped. I am on Zithromax, Plaquenil and Nizoral (anti-fungal) currently as well as CoQ10, Liver Support, Vit D, Vit C.
I am doing really well.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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posted
excellent resuts here, though no cure, w/, Dr. Z., TCM, in nyc, ____sinomedresearch.com.
i did this, approx. 1 yr. post infection, though, and not immediately, nor asap, after i snapped the tick.
-------------------- pingpong Posts: 361 | From At the Pingpong Tournament | Registered: Oct 2007
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Cass A
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Member # 11134
posted
My main symptoms were tinnitus, hearing loss, tiredness, brain fog, memory problems, vertigo, out-of-balance feeling, needing naps, and inability to get engaged in tasks that require thinking.
I tried TAO-free cat's claw with some benefit.
Then low-dose doxy, with not much change.
An herbal tonic--some better, some worse. Definitely more sleeping.
Cut back on Vit D and light exposure and started wearing NoIR glasses when outside and often when working on the computer. This helped quite a bit--less brain fog, less emotional upset. I still do this.
Alternating an antibiotic and Diflucan--not much better overall.
Artemisinin--quite a bit of improvement.
Buhner herbs--was doing better on mental functioning and stamina, then herxed so hard I passed out and had to go to Emergency and be admitted to the hospital. Twice.
Homeopathic Lyme treatment with Ledum--some betterment in symptoms that seems to have persisted.
By this time, the vertigo and out of balance feelings were gone and haven't returned.
Detox footpads for several months--clearly a noticeable improvement in mental functioning and vision. I still use these some times.
Zithromax for only a couple of weeks, but helped clear up brain fog and the lingering malaise from the second episode of going unconscious.
2-3 months of 400 mg Doxy--doing ok, but hearing got worse, so I stopped it.
Humaworm--better stamina.
Now on a proprietary herbal mix from an LLMD for Babesia.
I guess that's about as much of a mix as you can get, eh?
Love,
Cass A
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
I hit it with everything I could get my hands on, that made good sense to me, and that was positively indicated by muscle testing.
My opinions on the most effective treatments for me:
Bart: Deseret Biologicals Bart Remedy
Babesia: Wormwood/ Artemicin, Fresh Garlic
Borrelia: Borrelia Remedy from Deseret Biologicals
Lym remedy from Deseret biologicals
Antibiotics of choice: I like penicillin injections because they are easier on the gut, excrete through the kidneys and bladder, and cross to the CFS/brain. I prefer with as much Flagyl as tolerated, so the abx doesn't drive the L-Form.
Metronidazole/Flagyl, Bee Venom ointment, and proteolytic enzymes for the L-Form
Low dose sea salt to allow treatments to pass through cell walls to get at intracellular forms
I also feel strongly about adrenal support, mitochondria support, candida and parasite cleanse, mercury detox, and healthy diet and light weight lifting.
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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posted
Our son has been sick for five years. He was diagnosed and treated with two weeks of amx at the onset.
1 and 1/2 years later he relapsed. At that time we treated him with LLMD recommended antibiotics - lots of them.
Symptom free for six months. Treated with antibiotics again, symptom free for six months again, then relapse.
Our new approach is antibiotics, rife and Stephen Buhner - not all at the same time.
Right now he is only on the Buhner protocol and we recently found out that his lyme numbers are down (digital health screening). He's back at school for the first time since Nov.
I like to think of this approach as a triple threat. We want to keep surprising the bacteria. Plus, the antibiotics were hard on our little guy's gut, despite all of the probiotics he was taking.
I think treating Lyme is incredibly complicated. I don't think I'll every be able to tell anyone that they should definately use our approach, because everybody's infection is different, as is their general constitution and response to different treatments.
It's also quite possible that we'll alter our treatment more as time passes and we monitor our son's progress.
I'm just so grateful that he's getting back on his feet.
Good question, AliG. I'm interested in hearing everyone's answers.
Posts: 44 | From Prairie du Sac | Registered: Jan 2008
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posted
I'd like to share one more thing about our particular case, as it maybe helpful to someone.
Starting at six months years of age our otherwise healthy son was on antibiotics off and on for ear infections and strep throat. As soon as he went off the abx, the infection would return. This went on for years.
Now, let me tell you that even though our son has enjoyed nice symptom free periods on antibiotics he NEVER herxed when taking them.
However, on Buhner and rife he had horrendous herxes. I finally know what they are.
Something in me tells me there are some conclusions to draw here about his particular system, I'm just not smart enough to figure out what they are. I'm open to anyone's insight.
Hope I'm not monopolizing your thread AliG. Like I said, I'm very interested in hearing other responses, as I know I can learn from them.
Posts: 44 | From Prairie du Sac | Registered: Jan 2008
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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
I've probably had Lyme since I was very young -perhaps 4-7 years old. The symptoms did not become overt until about 21 years ago, and perhaps a series of events triggered them - death of both my parents with 60 days of each other and the ensuing estate issues, a nasty reaction to a Tetanus booster shot, a bad reaction to sulpha drugs for an ear infection, etc.
I didn't know I had Lyme until Dec. 2005. Only known co-infection is EBV, but I'm not ruling out some false negative test results on other infections.
I've never taken abx or any allopathic treatments for Lyme.
For several months, I took Samento, freeze-dried Allicin, Colloidal Silver, and a high-potency homeopathic (which I learned later was not prescribed properly). I seemed to be holding my own but decided to look further.
I finally ended up stopping all of the above and began working with a classical homeopath, and have been using homeopathic remedies for about 18 months. I do take some supplements, but these have undergone several changes over the past few months and I still intend to change more, as needed or tolerated.
Severe osteoporosis became obvious when I broke my pelvis this summer, so I'm fighting two major problems (which are probably related). This has complicated my treatment protocol.
I'm not well yet; I may never be completely well since there is so much damage to my spine and GI tract from being undiagnosed for years and taking all kind of `palliative' orthodox drugs over the years to manage my symptoms. Add my bone density problems to the mix and I've got a real 3-ring circus.
Nevertheless, I can tell you that I am off all OTC and prescription medications, and 90+% of the time, I can manage my symptoms with homeopathics.
While I may never be a true `success story' here, homeopathic treatment has exceeded my expectations in many ways. I only wish I had known about this system of medicine 20 years ago. I believe my story would be a lot different.
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Bitten 1996, no symptoms until 2005. No positive co-infections tests to date, but clinically dx with bart. Positive test for m. pneumoniae (maybe not tick related), EBV, and HHV6.
In the year before finding LLMD, saw a medical intuitive who sold me $1000 worth of supplements that he said would get me well. They didn't. I also spent about $500 doing soft tissue manipulation which felt great but, nope, symptoms still there.
Started tx with LLMD Jan 07. Treatment has been aggressive, with antivirals, Rifampin/doxy/mino combo, and recently Bicillin. In Dec LLMD added Buhner herbs, which I am slowly ramping up on. So far they have been rough!
At recommendation of LLMD, who I really trust, went to see a "Lyme literate naturopath" in Reno who worked with me for four months before I couldn't afford her anymore. She also sold me a boatload of supplements and homeopathic remedies that didn't do anything. I'm not ruling out that she couldn't have helped me, just that I couldn't stick with her long enough for her to help me.
I have continued with acupuncture and massage as adjunct therapies, FIR sauna every other day, lots of good probiotics, transdermal magnesium cream, amino acids, CoQ10 when I remember to take it, and liver support. I find that I just can't remember to take all the supplements, herbs, and abx so I've pared it down to bare bones. I feel that this approach is making some inroads on my illness.
Posts: 3528 | From US | Registered: Apr 2007
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posted
I see a LLMD and took oral antibiotics (too
numerous to name) for 2 and half years. Then I
did 7 months of IV rocephin. I then felt great!
No symptoms! However, because my insurance would
not pay for the IV, I ran out of money an had to
stop before my LLMD wanted me to. 6 months later
my symptoms started to come back.
I then began my alternative medicine treatments.
I did bioresonence treatments, and started a
blood type diet. I took digestive proteins,
protease, magnesium supplements. I was herxing
after the bioresonence treatments, but then I
would feel great. Then my alternative doc moved
out of town. bummer. I haven't found one I
trust yet. Anyone know of one in York, PA?
I've just ordered my foot detox pads and am also
using escential oils. I believe the immune
support system oils kept me from getting the
sinus virus that spread around at work. So far,
I haven't gotten any colds! Still working on the
blood type diet and taking magnesium (really helps
my muscles to not tighten up) Holding my own
right now.
Posts: 111 | From York, PA | Registered: Jul 2007
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Hey AliG,
I don't think this is such a great IDEA....
I know you do....but...to me it seems rather redundant and perhaps annoying....but only to me perhaps....
I believe I answered your question concerning proper treatment if you are really sick and want
to get really well in another post which asked
the same questions phrased slightly differently....to re-iterate....I did what Cave
did, to a slightly less or more degree depending....
I only got well with Dr Burrascano and ILADS protocols....
period...
Like I said if you're really searching for a cure...
this is the only way you're ever going to achieve what we might call a "CURE".
Just to say again....MMS,light sabers,cognitive water flushes,immune system re-education or
subliminal re-education or brainwashing placebo effects are just that....
Snake oils of one sort or another....brought to these threads on this website by those who would
seek IMHO to discredit a good sourse of information for sick individuals with real TBD"s.
I do believe I put these little beasties in total remission back in 54 when the doc just had penicillin shot into my butt...
This was probably when it was'nt as virulent and I most definitely became reinfected possibly
several times...and was misdiagnosed and treated poorly by ducks who not only performed a
great disservice to me and my wife but injected into my medical records falsehoods of many and varied information.
Which is ultimately why I call most people I have gone to see about my illness's DUCKS....until, and when they prove me wrong.
Just to answer another thread!
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Tony,
I'm sorry I'm causing you annoyance. That certainly was not my intent.
I was trying to figure out a way to give my DH some perspective on what it has taken me years to learn. He has been the opposite of supportive (to put it nicely) and has decided to try to make up for it.
I asked him to read up on ILADS, info from LDA, and other sources. He set about looking for a quick "cure" for me. We ALL start out there.
I wanted him to be able to get a better picture and was trying to do it without starting any major disputes on the board. I realize that different people have different ideas on what has helped or is helping them.
I'm really just looking for what has definitely helped and also trying to see if there are reasons why something may have appeared to help but improvement may actually be the result of many different things.
I started off with one thread that was something he had inquired about, then I felt the need to shed light on a different approach.
There were people who didn't really fit in that approach either, so I tried to set up a thread for them also.
Yesterday, I think my brain exploded from trying to keep up with too many threads at once. (I've done this before, unfortunately .
I seem to have gotten a bit mentally paralyzed by my brain fog & haven't been able to formulate replies for so many posts coming so quickly.
I have things I have to get done today, but I plan to try to sort through & respond to everything later.
Thanks for your patience & thanks for trying to accommodate me in multiple threads, despite the fact that I may be annoying EVERYONE with my efforts to NOT annoy ANYONE.
I was trying to keep the threads "clean" so they don't get so darn confusing, trying to separate opinion & speculation from actual experience. I realize that some things may help some people, but just don't seem to work for others.
I should have realized that I may have been biting off more than I could "chew" & digest. I still have high expectations for myself that I can't always live up to anymore.
I think if I had realized that I needed thhis thread sooner, more people may have posted here instead of in the individualized Tx plan threads.
Perhaps in all of this some of the people, who tend to disagree with each other (A LOT), might realize that they actually have quite a bit in common with Tx approaches and experiences.
It would be nice if it could help take away some of the sensitivity of some of the issues that come up, as an added bonus.
Sorry again for being annoying and thanks for being so nice in telling me that I'm getting on your nerves! I do realize that you've excercised some restraint here & I appreciate it!
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
for the record, i don't think you're being annoying at all. no need to apologize, ali.
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Thanks, Wallace.
Ali, I think posting separate threads the way you did was a very good idea - good job.
I think it has been made abundantly clear on this board from those that have 'been there and done that' that abx are not the only road to wellness, although using abx may enhance many other treatment choices.
It's important for new people to understand that an inability to tolerate abx does not mean that they are somehow "doomed" when it comes to treatment. It's just not true, and some of the evidence exists right here on this board.
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
If the poster who originated this thread did'nt think I was being "mean and abusive" Why then yanivnaced, do you think so....
and you could mind your own remarks....
I was NOT being "mean or abusive" as AliG pointed out!
I was merely stating a fact....plus she has even figured out that trying to do this is an
exercise in confusion to anyone who has the slightest bit of neuro-problems.
I did'nt know why she was doing what she was doing....I know, now, that it was an attempt to
get her DH some type of education so that he might be a more supportive partner.
I would gladly take the time to instruct him in any way he would like. I have a lot of knowledge
of this disease and some of the ways in which some people approach this disease be it because
of being a patient(an infected individual)or the spouse or caregiver of one who is ill.
Even some opinions of those who would try to con or missrepresent themselves or their regimens of treatments in order to rob the sick of their money and self esteem.
AliG is well aware of my honesty and sincerity in these matters.
I would like to say Ali, that I was not as offended as it might have sounded in my post,
(that is the problem with just writting down words, the WAY in which some things are said,
can bring a totally different meaning to WHAT is said...unfortunately no SOUNDS go along with the printed word here)
If I could not convince him of the seriousness or the gravity of this multiply debilitating
disease and the personalities that may or may not be exhibited by the person that is ill...
my wife would be glad to give her side or perspective to anyone who has or will have to put up with an infected spouse or caregiver.
I resent being singled out as someone who is "mean and abusive" which I am neither.
It seems strange to me that a poster that I have never heard of is making these accusations about me in particular.
Going against the very intent of the original thread posters idea or ideals for having so many
threads asking similar questions, in the first place.
I guess you....ynivnaced...don't get it!
Not surprising!
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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Peacesoul
Unregistered
posted
Alig, I love this thread. Great idea. One stop shopping for info.
I was on abx since Nov. Zithro (500 mgs a day), Doxy (400 mgs a day) and pulsed the Flagyl (1500 mgs a day). I only did the flagyl twice. Now I am only on 200 mgs of doxy a day. I'm trying to wean off meds b/c I want to go all natural. Not sure yet what my ND will recommend, but I know Ledum will be one of the tictures she will rx. I now take a lot supps as well. I think oil or oregano is imperative in the healing process.
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
quote:Originally posted by yanivnaced: I'm not looking to pick a fight here...
But how come Tony Z has not been permanently Banned from LN?
This is not the first time I've seen him be mean and abusive.
yanivnaced, Did you have something to share as far as multiple Txs?
Thank you, if you thought you were defending me, but I actually think I understood why Tony was expressing frustration. I didn't take offense to his post at all. I think Tony & I have seemed to understand each other's intentions even though others may misinterpret the meaning of our words.
There was a subtle difference to this thread and it could include people who've already posted for some of the Tx topics individually.
I was however, looking for those who have tried more than one approach. I may have made it appear as though I was trying to group everyone together, when actually I'm trying to separate experiences.
Tony, my sweetie ,
Thanks for the offer of assistance to my DH. You are such a doll.
I know you've got a GREAT BIG HEART under your tough exterior and I didn't think for one minute that you were trying to be mean or abusive to me. I don't believe that you have EVER been mean or abusive to me.
If I did, I probably wouldn't have tried to explain to you my reasons for scrambling my own brain. I likely would have just asked why you felt the need to be mean & abusive (if I thought you were, which I didn't, but I think you got that ).
Thanks again for your offer to help me & the DH. I may need to take you up on that.
yavniced, I just reviewed the thread to check on something & noticed you had a post after Tony's which I had missed while I was posting this.
I have gone through great effort to try to keep nastiness and hurt feelings out of these threads, trying to have relevant contributions & don't appreciate them being used as a forum for antagonism and personal attacks.
If your purpose for posting in my thread is merely to taunt Tony & NOT to contribute anything to it, please be kind enough to start your OWN thread so that IT may be pulled by the moderators, instead of mine.
Thank you.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Peacesoul,
Thanks for the input. Please post back & let us know how you made out with the ND's approach. I hope you have success with it.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
I would greatly appreciate if the personal attacks on Tony could be deleted from my thread & taken up elsewhere.
Though you ARE free to do whatever you want, I personally find that statements like these appear to be intentionally hurtful & it upsets me to have to watch fellow sufferers hurt each other on purpose.
Thank you for your consideration,
Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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posted
AliG: ok. I deleted my posts. Didn't mean to stir up controversy.
Posts: 655 | From USA | Registered: Sep 2007
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
thanks AliG. zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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Cobweb
Unregistered
posted
Fortunately my treatment and success has been straight forward-long term oral/IV antibiotics.
This protocol was supported by gluten free diet and immune boosting supplements, and regulation of thyroid.
I plan to continue with diet. I did hear recently that as we age-all women have a harder time with wheat.
It was suggested to all women to reduce wheat intake as they age-and the program had nothing to do with Lyme. Of course, anyone who steps outside or has a pet could have lyme-hence the possible misperception that it's just part of the aging process.
At my last LLMD visit this week the doctor said that we never really know if the TBD's have been iradicated. Our personal plan is to continue with supplements-and if I feel a relapse coming on I will start another course of antibiotics.
I had test results in my favor, including positive Lyme Tests and Spect Scan. So I didn't have to experiment with treatments to fix what might be wrong.
Straight forward diagnosis, straight forward treatment, straight forward improvment has spared me a great deal of "searching for what works"
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
yanivnaced, Thank you.
Tony, you're welcome.
Cobby, I'm jealous! I'm happy for you, of course, but SO jealous!!
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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