posted
Okay, here goes. I'm new to this conversation but I think I've finally removed my head out of my own **** and stopped floating down that river of "de Nile" and am ready to face this Lyme thing.
So I had a classic bullseye rash in Montreal in 1997, and unfortunately I did not get it checked out. I think I came down with a flu like feeling after a bit. A while after that I felt fatigued etc, but sort of struggled along, able to study full time etc until a car accident in 2001, and then I had to go on leave. I got back to work full time until another car accident in 2004, then things got worse in 2006 after a surgery for endometriosis when I started reacting to things (like anaesthetic, birth control meds, travel vaccines, oregano oil, antibiotics, goldenseal herb, a car accident followed by craniosacral therapy, Bowen therapy, and recently, SmartGingko), with varying degrees of muscle weakness that seems to start at the legs and then go up, leaving me too weak to hold my own head up or speak properly. Sometimes it was bad enough to impair my breathing, heart muscle function and swallowing, etc, so pretty scary. Then I got a script for Mestinon, and this definitely helps with the weakness, although only to a point. Kundalini Yoga has also been helpful in strengthening my system so I haven't had as severe weakness.
I have had a borderline Myasthenia Gravis MuSK antibody result on a test, but aside rom that no official dx aside from "Chronic Fatigue Syndrome" and Fibromyalgia, as well as endometriosis. I got tested a couple of years ago but had a negative response of the ELISA, and also for the Igenex Lyme Basic Panel, the Western Blot. I have (mostly) mild weakness and night sweats that come on every month prior to menses, and I get muscle twitches and pain around this time as well. (Is this the Lyme/Babs/whatevers cycle??) Since the concussion from the MVA as well, I've had brain fog and cognitive challenges that are intermittent and seem to go with a headache and pressure-type feeling (is this neuroencephalitis??)
Anyhoo, I am trying to figure out what to do as I seem to be hearing that antibiotics is the only way to kill Lyme, and the folks I've talked with have never seen anyone, ever, get better without them, yada, yada yada.. and I don't think my system can handle antibiotics. As in, I could possibly bottom out and again be so weak as to have primary muscle function of the heart and diaphragm impaired. Really don't want to go back there!
So, my thinking is that it might be best to be as respectful as I can be to my extremely sensitive system, and start with the gentler therapies to see where I get to with those. I do very well on homeopathics, and just yesterday pulled out of the SmartGingko tailspin with a Mestinon/ Nux Vomica combo. Mestinon got me walking and sitting upright again, but a few doses of Nux Vomica actually had me playing with the dog and running a bit.. that long lost springs-in-my-feet kind of feeling!
I have also noticed how, if I cave to sugar cravings and get into the ice cream, or too many cookies and sweets, I can derail myself *very* quickly, and it takes along time to get my energy back up to the (still low) norm. I am also noticing how much better and stronger I feel when I take a probiotic at every meal. Really don't want to wipe out all my gut flora, you know?
and I must say this guy is awfully convincing, but then I have the local Lyme advocate who has had it, whose daughter has had it, who has been an advocate and sat on many advisory boards, etc, over the last 20 years, who is adamant that the only way to get rid of lyme, especially late stage lyme, is with antibiotics, really strong ones, for very long periods of time. He also stressed that taking herbs or homeopathics screws up the effectiveness of the "real" treatment, the antibiotics. He said the people that get better are those who take on the big guns, and the ones who "run around and chase all kinds of other natural or homeopathic things don't." Got to admit, the man scares me with this talk. Do you feel this is true?
Also, I've been sick for a long time, and haven't been able to work much in the last 11 years. I'm at least working occasionally now, which is an improvement over not at all, so I am reluctant to upset the apple cart by landing myself back in full on, flopped out, in myasthenic crisis mode or potentially worse than that by taking antibiotics. I have also already been spending lots of $$ over the years on trying to get better, so I don't have a lot of financial resources to pay for treatments either. Another advantage of homeopathics is that they are *cheep! And i like that the point of treatment with them is to strengthen the person's constitution and enable their system to create balance within it. This state of balance is probably why some people can have Lyme infections and yet they are running around, all robust, and chopping wood or saving the world or what have you.
I'd love to hear from you guys about what your experiences have been like with the different therapies and what you think of antibiotics vs gentler stuff.
I'd be particularly interested to hear from folks who have the muscle weakness/myasthenia type reaction, the monthly cycling of symptoms (sweats, weakness, brain fog, headaches), fatigue, late stage timeline, sensitivity to meds and chemicals, low blood pressure, and anaemia.
Thank you!!
Gabe
-------------------- "Keep up, and you will be kept up." Y.B. Posts: 25 | From BC | Registered: Mar 2016
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
Personally, I know more people who've regained their health from other means, not antibiotics. So many people control it in other ways but don't necessarily get better but they manage through lifestyle. You say sugar derails you, that means diet is a big factor for you. So obviously, no sugar. If old spinal issues from car crashes, maybe try a kinesthesiologist as a part of your recovery. Lyme tends to exaggerate old issues that could hinder progress.
I was on IV antibiotics of all kinds for a few yrs with no results. I've had a lot of the issues you talk about especially with the weakness. But also the leg issues, brain fog, etc. I made much more progress after I broke my arm and they took PICC out. Otherwise, I'd have kept it in with no progress.
My advice is try a cheaper, gentler protocol like the homeopathic one your looking at. Or possibly an herbal approach. There's no shortage of them. Especially when you say it's late stage. Definitely concentrate on the gut.
droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
Also, in reading a lot of that website you referenced is a ton of great info. But there are a few red flags when they talk about false positives, short treatment cycle for antibiotics, post lyme syndrome, & also talk about how lyme is not common. That's sort of an older IDSA/CDC approach which anyone who's had this illness will agree is wrong. Even they are finally coming around knowing they've been wrong.
posted
Thank you Droid. I agree, that sounds about right. There are a couple of NDs in my area who have been recommended, although by those who feel antibiotics are the only mean. I did find another guy who treats Lyme with IV therapy: vitamins and also hydrogen peroxide. I'm hoping to get a chance to speak to them all and see what their approach would be, if I can somehow find that out without booking an appointment.
How are you doing now? I hope you're feeling well!
Gabe
-------------------- "Keep up, and you will be kept up." Y.B. Posts: 25 | From BC | Registered: Mar 2016
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bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
There is rife ,bvt, phages , photons ,m hbot, silver, ozone ,essential oils ,h202, herbs. This alt doc has ordered smart port to which i am still on the fence about .
.. i guess like droid said could always try iv later,only problem is the damage being done is it reversable? I heard its like trying to rebuid a house while there is still a fire raging.
have you done genetic testing..you are still walking? What other mg symptoms? Do you have muscle wasting ,migraines, vision issues, ...?
Lyme doc said i neeedddd abx probably for life...and another said do it all...i am having trouble accepting that ...
this d.o.m that is helpful with kinesiology and tx from gb4000 said its the only tools they know , the iv will sell iv therapys ,llmd s. Abx ,oncologists chemo, surgeon a knife. ,its the only tools they know.
..i just dont know what to believe ...testamony from droid and six goofy and phioph are as real as weintrab, burrescano and martz...
.i was talking to a lady who did 7 trs of orals and iv .just stopped cold turkey and she recently climbed a mountain and is 6 yrs abx free using apitherapy .another post here uses rife...each has a key ,pick the lock...
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
As bluelyme said, there are many ways to health. Go with the treatment plan that resonates with you. Don't go with things that just don't sound right even if they seem the most logical.
I got to the point where I was just spinning my wheels with antibiotics and never reaching wellness. I'd crash whenever I stopped them or even took fewer and added herbs. I was drawn to photon treatment and treating all the secondary conditions, and that was what brought me to wellness.
I've been well since 2009. I still have to take care of my histamine intolerance and take my MTHFR supps, but Lyme isn't an issue at all.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Thank you Blue yes I am walking again, but I take Mestinon when I get weak, so that keeps me more or less mobile. I get migraines, bad brain fog, fatigue, cognitive problems, muscle twitches, dizziness, sometimes blurry vision, and bad night sweats on a monthly basis with menses. I haven't had genetic testing yet but was thinking of shelling out for 23 and Me sometime when I am in hopefully a little less debt at least! :S
And yes it seems like there are successes and failures with every therapy. I'm hoping to find the right one for me that won't cause worse disability than I have now. Like you, I'm worried about doing damage. And I do believe that the micro biome is so crucial to good health, so want to do what I can to protect that. I didn't know about apitherapy but will google it! Are you walking Blue? Do you also react badly to meds?
Thank you 6 Goofykids for your thoughts too. I want to get tested for MTHFR as well. I hadn't heard of photon therapy. It's good, if confusing, to know there are so many other therapies that can work for people!
I hope to see an ND here who is LL and who also does LDI (Low Dose Immunotherapy). has anyone heard of this or done courses in it? It is apparently very helpful for those who are more sensitive to treatment and get flared up very badly. Someone from the local Lyme support group in my area has been doing it and is going well. She sent me this link:
I had a listen and I think that is where I will start my treatment.
-------------------- "Keep up, and you will be kept up." Y.B. Posts: 25 | From BC | Registered: Mar 2016
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
Me too, and my daughter, we didn't fare well with abx. We only did a bit of it because everyone kept telling us that was the only way.
That way destroyed my daughter's gut, made her food allergies worse, and her lyme didn't improve, not a single bit. She was worse after abx than before.
Anbitibiotics is the LAST thing I would do for chronic lyme. There are SO MANY other gentler methods to do that really, if you do not feel for it, don't do it. Then you just blame yourself, not the practitioner for for the damage, I mean.
As for classical homeopathy, you can try it. I find it is OK, it may change somethings in your body, but I swear that TODAY it is not enough for healing a bad chronic lyme. I think 20-30 years ago, it would be enough. Today, not anymore.
I do classical homeopathy for decades, and my daughter since she was born, and we were not cured by it.
Even if the practitioner, a medical doctor with decades of experience, head of the homeopathic society of Belgium, etc swore he would cure us with it. Nope.
He is now using ALSO products that he refused to use before (like HEEL products).
today's health problems are much too hard for classical homeopathy alone. For almost any therapy, whatsoever. The complexity is too high, I mean, for single bullet therapies to work on chronic patients like us.
As for other types of homeopathy, I LOVE them. I don't think I would be here today without homeopathy.
Homeopathy comes much before herbs, and other types of energy therapies, in my opinion. It acts deeper, changes metabolism, support the body, and it is even a killer (like the photon + nosode therapy Sixgkids said above).
The exact treatment she did worked for us too (for lyme), but I am not sure this will work as a monotherapy. It also put our lyme dormant since 2009 (for both myself and daughter).
We never touched a dose of antibiotics since then.
No antibiotics, as they destroy what dr. Rau is trying to build (the gut flora and immunity). He receives patients that have undergone abx therapy from the US.
---------------------- Look at the type of high-tech homeopathic products developed here in Europe.
Once you start using products that correct metabolism, and 'talk' to your body in much deeper ways than chemicals, you can't go back to simple chemicals (unless in emergency situations).
Homeopathy is WAY smarter than anything chemical. Without homeopathy, I wonder, where I would be today!
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