posted
I wanted to update everyone on my condition. I'm in a rather unusual state of affairs. For the last two years I've been seeing this LLMD and I've been on pretty much every semi-conventional treatment under the sun to treat positive IgeneX Lyme and Babesia. Marshal protocol, IV vitamin C and hydrogenperoxide, tons of antibiotics, mepron, alinia etc.. everything except for IV rocephin, which this practice only believes in as a last resort. I'm also taking a metric ton of supplements. My most recent schedule of prescriptions have been 500mg Alinia 2x daily, 600 Zithromax + 75 Clindamycin every other day, and 500 Famcyclovir 3x daily.
To fast forward to today, my prevailing symptoms are fatigue and brain fog, same as they have always been. These haven't really improved greatly over the course of treatment. I also have pain, but it can be managed and I don't consider it to be life altering if I had full energy and my mind working as it should.
My CD57 is over 250. My current babesia WA-1 (Labcorps, for some reason) has been negative 5 times. My vitamin D ratio is normal, but my vitamin D as a whole has been low. My iodine was a bit low last time according to one of their urine tests.
Over the last few visits these LLMDs have been getting away from the actual lyme and coinfections themselves and looking for other problems. According to one of the MD's, he says that I'm not exhibiting any signs of infection or inflammation any longer and posed a new theory about why I still feel crappy.
In short, chemical toxicity. All of the antibiotics and yes, even supplements aren't completely pure. Prescription drugs especially aren't meant to be taken chronically and have all sorts of binders, including halogens like bromine and fluorine. That's what he thinks is causing my problem, combined with the fact that nobody really knows what long term Alinia is capable of. So he's going to test this hypothesis by giving me a holiday.
No drugs. No supplements except for fish oil and vitamin D drops. In two weeks I can add other things in if I want (protein shake, other vitamins etc). I'll be bringing back the iodine then too to help remove any halogens that are causing a problem.
I really hope this works. I was speaking to my mother today who told me when she was on antibiotics (for normal, unrelated to lyme things) they made her feel crappy. We're so used to feeling crappy from lyme, we may not know when lyme ends and the drugs begin!
So I hope this works. I hope I really am basically cured of active infection. I hope I don't backslide like some people do. But I wanted to put this possibility out there for people that have been on harsh treatment for a long period of time. If your CD57 is normal and many other tests come out negative, it may be time to try a drug holiday.
Posts: 690 | From East coast, USA | Registered: Jun 2006
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posted
Blackstone, I'm taking abx for the first time in a couple of years and am having side effects from them. It's not herx. Some of my tendons are hurting and a couple hours after taking the avalox I get depressed. I looked it up and both of these are a side effect from the drug. strong stuff. Good luck with your break. Don't forget probiotics!!
Posts: 117 | From . | Registered: Oct 2006
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posted
thanks lymetoo. I have been being careful as far as stepping off my step stool slower than usual and things like that. I won't be on the drug for too long.
Is the theralac guaranteed to have potency? (I'm too lazy to do a search. just kidding. I'll do a search) I just don't trust some of these probiotics that are sold am an not sure their even alive.
Posts: 117 | From . | Registered: Oct 2006
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Truthfinder
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posted
Thanks for posting, Blackstone. Your doc has made a very good point about drugs not being "pure" and containing a lot of junk not meant to be taken over a long period.
I have a sneaking suspicion that this may be a much larger problem than anybody realizes.
I thought you were also using combination homeopathy? Or maybe I got my wires crossed on that?
Tracy
-------------------- 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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Aniek
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posted
I'm on an abx break because of GI syptoms and, almost 4 weeks in, I feel great. I do still get dizziness and my shoulder muscles are tight.
But it's a lot fewer symptoms than on abx. I think I also need to clear out my system.
The dizziness I'm pretty sure is autonomic nervous system related, as my pulse drops about 20 points when I'm dizzy. I believe the ANS symptoms need to be treated seperately from Lyme and won't just disappear when Lyme is gone. You need to reverse the damage.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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quote:Originally posted by summerlove: Is the theralac guaranteed to have potency? (I'm too lazy to do a search. just kidding. I'll do a search) I just don't trust some of these probiotics that are sold am an not sure their even alive.
quote:Originally posted by Truthfinder: Thanks for posting, Blackstone. Your doc has made a very good point about drugs not being "pure" and containing a lot of junk not meant to be taken over a long period.
I have a sneaking suspicion that this may be a much larger problem than anybody realizes.
I thought you were also using combination homeopathy? Or maybe I got my wires crossed on that?
Tracy
Truthfinder -
Yes, I was also under homeopathic treatment. In about November (I think) my homeopathic M.D. basically certified me as being clean and that I had no more active infections, stopping the homeopathy. Since that time, he has been doing accupuncture, as a neurotherapist (phd) did a surface EEG of my brain and I pretty much have no brainwaves of any kind, except delta. She isn't sure if thats because of lyme or something else, and that's a totally different theory on illness altogether!
So yes, now both my ILADS style LLMD and my homeopathic/accupuncture MD think I'm more or less clear of infection at the moment.
Posts: 690 | From East coast, USA | Registered: Jun 2006
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MariaA
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posted
There's a thread here that talks about an old study (circa 2000) of several brands of probiotics- they tested fairly good as far as potency:
I just bought a really fancy probiotic and i'm going to use it as a starter to make yogurt (or rejuvelac or sauerkraut, all of which use the same beneficial bacteria)- I sometimes get better results, digestion-wise, if I take a 'live' food probiotic than a pill, and right now I feel like I need variety after 6 months of killing everything in my system.
-------------------- Symptom Free!!! Thank you all!!!!
D Bergy
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posted
Rife therapy works for my wife. No side effects, easy to do, and steady improvement. It is really like hitting the spirochetes with a baseball bat.
I like the idea of hitting them with a baseball bat.
But, maybe you will not backslide at all. After what you have been thru, you deserve a break.
D Bergy
Posts: 2919 | From Minnesota | Registered: Aug 2006
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Truthfinder
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Blackstone, you said you stopped the homeopathy in November. How many months/years were you doing that? You are seeing Doc S. in MD, correct?
quote:a neurotherapist (phd) did a surface EEG of my brain and I pretty much have no brainwaves of any kind, except delta. She isn't sure if thats because of lyme or something else, and that's a totally different theory on illness altogether!
Whoa! That seems really strange. Aren't delta waves normally ONLY found during stages 3 and 4 of deep sleep?
That sure would explain the fatigue and brain fog.... it's hard to imagine just how much this might affect you. I can't imagine how this happened.... possibly even from Lyme? That would certainly be something new I've never heard about.
Can you tell us any more about what your docs think this is from, what the implications are as far as your health, etc.?
Tracy
-------------------- 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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posted
Yes, I'm seeing the famous Doc S in MD for homeopathy and acupuncture He treated me for a little less than a year.. I want to say about 8 months, with appointments every 6 weeks or so.
This PhD is not directly lyme related, per se, but treats brain dysfunction, including lyme brain fog/fatigue etc... Its true that delta waves are usually found in deep sleep, but apparently people with abnormal situations like infection or injury, can have abnormally high waking deltas, and abnormally low everything else. Curiously, this doctor has noticed a pattern on the brain map that she believes stems from infection, instead of injury. However, for whatever reason, I don't have that pattern. About of 80% of the patients with lyme or similar related infections display this pattern if I remember correctly.
So its really like I'm in a dreamlike state when I'm awake! I would expect that a number of us who have brain fog and fatigue would have similar wave abnormalities.
Now, as for the cause... she isn't sure if it is the lyme or something unrelated. Her "school" of though is as different from regular neurology as LLMDs are from ID docs. Now, that's not to say its necessarily a good difference. I haven't been in therapy long enough to know if this is working. The hypothesis is that its much, much easier to get brain damage then anyone else thinks. For instance, if you have a little bump on the noggin playing sports when you were a kid, its possible that's what caused everything from fatigue to ADD. Basically, head trauma is really, exceptionally easy to get. I had a bad electrocution a few years ago (when I had lyme, but undiagnosed) so one theory is that that is what's preventing me from getting rid of the neurological symptoms.
Trauma from injury or illness warps your brainwave patterns and causes all sorts of problems. These can be remedied with electrostimulation, which is basically attaching leads to your head and sending painless stimulation to reboot your brain into the "right" pattern. This is a painless procedure. I've had it done about 8 times thus far.
Unfortunately, the doctor says that my brain isn't really "listening" so far,so we're not really sure what that is indicative of.
Posts: 690 | From East coast, USA | Registered: Jun 2006
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Truthfinder
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Thanks very much for the additional info, Blackstone. Sorry you are a bit of a guinea pig in this deal, but I find this most fascinating.
Did you tell Doc S. about the electrocution thing and the delta waves, etc.? Of course, the reason I ask is that Phosphorus is a classic homeopathic remedy for "ailments from electricity" (I'm sure there are others, too), and I just wondered if there might be some help in the homeopathy department. Well, you've probably already been there and done that, but thought I would mention it.
Also, I really had no idea that seemingly minor head injuries could turn out to be so significant.
Best of luck and I hope you will continue to update us in the future.
Tracy
-------------------- 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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posted
I don't really understand your most current abx regimen. Alinia, clindamycin, and famcyclovir are not specific for Bb, and the little zithromax you're taking is certainly not in doses large enough to kill off significant amounts of Bb.
In fact famcyclovir is for herpes, and alinia is for protozoans.
I'm sorry you've not had good luck w/your therapy, but maybe you need a 2nd opinion from another LLMD.
I agree w/trying other forms of homeopathic treatments, i.e., rife if you're going to be off of abx for a while.
good luck.
Posts: 449 | From Pasadena, CA, usa | Registered: Aug 2005
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Truthfinder
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Psano, it sounds like Bb may not be the only culprit here, and I'm glad Blackstone's docs are looking at other "etiologies".
By the way, Rife may be a great idea, but it does not fall into the realm of "homeopathy". Homeopathy is a system of medicine unto itself, and should never be confused with ANY other form of althernative therapies.
Just wanted to clear that up. It is a common error.
Tracy
-------------------- 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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I understand that other organisms may be a play here, but the point I was trying to make is that her current regimen was probably not reaching therapeutic levels for Bb.
I mean, 600mg every other day of zithromax just doesn't seem adequate to eradicate Bb.
Posts: 449 | From Pasadena, CA, usa | Registered: Aug 2005
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He treated me for a little less than a year.. I want to say about 8 months, with appointments every 6 weeks or so.
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