Aug 062014
 

As I posted before, I was diagnosed with Lyme late 2013.  I believe I have had LYME for over 20 years and know that it will be difficult to be completely LYME free.  I am convinced that I must build and protect my immune system.  I believe that treatments should include both conventional and alternative.  I began aggressive treatment December 30, 2013.    I took heavy antibiotics and anti-malaria medications through April of 2013.  At that time, I retested for LYME with the I-spot test.   The test showed that all of the heavy medications were doing their job and the LYME Spot count was 75% lower.  It was at that time that I decided to move away from Antibiotics and heavy medications.  They had brought me so far, but in the process had caused candida and gut issues.  I read Bryan Rosner’s book  “The Top Ten Treatments for LYME” and began to read up on RIFE frequency treatments.

I am lucky to have a alternative Chiropractor in my town of Littleton Colorado, who has had great results with RIFE for LYME and other bacterial infections.   He is able to do dermal scans to get an idea of bug load and location.  I then sit at his office for a fee and use the Rife frequency treatments.   I generally sit for 30-60 minutes each week.  I am now just taking Grapefruit seed extract Probiotics Krill , magnesium Vitamin B, CoQ10 and alpha lopic acid.  I take Kavinase for anxiety when I need it.  I also began drinking LIMU which is a interesting sea food product with Focoidan.

I have not purchased one, but may consider someday.  The machine he uses is called Wellness Pro  and run about $3800. I can’t afford to lay out that much money at one time.

I absolutely have seen improvement.  Last week, I felt as though I was catching a cold and I went into the office and used the rife machine for 30 minutes. Then sat in a Infrared Sauna to detox.   I felt better that afternoon.  I continue to have more consistent good days.

It is a marathon, not a sprint.  But, I take each take and try to enjoy especially when I feel good, which is more frequent now!

Praise GOD!

 

Jul 192014
 

A city girl from Denver learns the source of her chronic suffering…
and discovers that Lyme disease can strike anywhere

By Linda Warner, guest blogger

Let me start by saying that I am an overcomer of many things. I grew up in a very abusive alcoholic home, where my parents struggled to put food on the table. I left my home at 16 to enter an abusive relationship with my daughter’s father. I stayed in the relationship far too long, but knew it was not what God’s plan was for me. I put myself through school, even going on to get an MBA. I ended that relationship. But nothing has been more draining to overcome the Diagnosis of LYME. I know that God has given me the strength and the tools to overcome anything.

I am not sure when I got bitten by a tick. I experienced no bulls eye rash. What I did experience, seemingly from out of the blue, was bone-deep achiness and endless fatigue and anxiety. Psychiatrists diagnosed me with everything from PTSD to BiPolar. As a single parent, marathoner and hard driving, middle-aged sales rep for a major global pharmaceutical company, I told myself this was normal. After all, my work had me in and out of doctors’ waiting rooms all day long — of course I would be prone to picking up whatever the patients were bringing in. Plus, wasn’t this what all “women of a certain age” go through? One fall day in 1989, driving to a sales call, I literally fell asleep at the wheel. I awoke after colliding with a tow truck. While the truck driver was fine, I suffered a back injury and my body ached worse than ever.

The accident really scared me and served as a virtual “wake up” call to get help. Surrounded by doctors at my job, I had easy access to a wealth of professional advice and diagnoses. And everybody pretty much said the same thing: It was all stress and anxiety. Continue reading »

Mar 222012
 

For some reason I never posted my Lyme treatments. Here is the spreadsheet with various comments. The first doctor was a quack. I am shocked he has not seriously hurt someone. The next doctor never seemed to take my care that seriously and left me on inadequate medication for long periods. It peaked with him not knowing one of the drugs he prescribed negatively impacted male fertility. As always I recommend trackng symptoms and medication. For what it is worth here is a quick list:

Artemisinin
Azithromycin
B12 (cyanocobalamin) Injection
Biaxin XL (Clarithromycin)
Cholestyramine
Cipro (Ciprofloxacin)
Diflucan (Fluconazole)
Flagyl (Metronidazole)
IV Cleocin Phosphate/ Clindamycin
IV Levaquin/ Levofloxacin
IV Rocephin
IV Rocephin via MediPort
IV Vancomycin via MediPort (self infusing)
Levaquin/ Levofloxacin
Malarone
Minocin (Minocycline)
Septra DS
Tindamax
Ursodiol (Actigall)

Sep 022011
 

As I posted in a comment. I am not all better but I have remained remarkably stable. As I have noted before I am much better than I was when I started and I am no longer having relapses, etc. The Lyme treatments I took made a significant difference, but I eventually did not notice any improvement. On the other hand I do still have lesions on the brain. If the lesions are caused by MS, Lyme, or something else I do not know. At this point they appear to be silent lesions and I am neglecting them for better or worse. For quite a while now I have not been taking any treatments. I, of course, still see my neurologist for treating my seizures and he still disagrees with how I am handling my Lyme/MS treatment; some things will never change. For now it will be more of the same as far as treatment.

Best wishes to all of you as you seek answers and are looking to get better!

Sep 072010
 

Early last year I went to the LLMD and it was the same type of normal appointment. You would almost think this was a follow-up appointment to a physical; “You are doing great. Keep up the good work and I will see you back in a year” is the general tone. Before being dismissed with a pat on the head I told him we were having trouble getting pregnant with our next child, little Aria, so I asked if Lyme impacted fertility. Without answering the question, but looking at my other three children, he flippantly said something to the effect of you do not seem to be having any problems. Fool!

I had then been taking two antibiotics for at least a year. I was not happy with either and did not think they were doing anything to help me. The two antibiotics he left me on were Minocin and Flagyl. (Sure, I could have asked him to modulate the antibiotics but what am I paying him for? It worked out for the best.) A month after the appointment I did some more detailed looking at both drugs. As it turns out Minocin can impair male fertility. That would have been the kind of side-effect information I would have expected the doctor to know and share; rather than shooting off flippant comments.

At this point unhappy with my treatment, and seeing it is only causing problems, I stopped all antibiotics. We both assumed that the Minocin had done significant fertility damage and it would take months to recover my lost fertility. In reality it did not take that long and little Aria was soon on her way. In the end the Minocin almost certainly paved the way for Aria to be a girl since Y’s are supposed to be more fragile (insert favorite male joke here). The additional bonus amidst this is I got off two drugs that I definitely did not need to be taking anymore.

Maybe the doctor was keeping me on Minocin because I had to bring my kids to the appointment. Were the kids frustrating him so much that he was attempting to chemically sterilize me? Maybe this is just best to apply Hanlon’s razor.

Sep 042010
 

Based on what I have heard I expect the change to Shoemaker to be a significant change in protocol. I am used to taking antibiotics like Chiclets but I believe Shoemaker is a short-course antibiotic therapy doctor. If that is true for him than I am sure I am done with my antibiotics while under his care. That is certainly one thing to be very thankful for. I think his focus is on removing the toxins, lyme, etc., from your body.

To be fair I had been taking antibiotics and not seeing any improvement. I saw an initial significant improvement and then it just stopped. I continued with the antibiotics for a while hoping it would put me over the edge, but it never did. I quit all treatment because it was not helping. I hope this change makes some needed additional progress.

As it notes on his website he uses cholestyramine (CSM) to help remove the toxins from your body. I have taken CSM before and felt better while taking it. I stopped the CSM for a number of reasons. First, I was prescribed CSM to improve my contrast resolution, but I never saw a noticeable improvement. 😉 Secondly, CSM is somewhat vile to take. Lastly, I grew tired of having to coordinate taking it at an odd time safely distant from my antiepileptics. As a bonus the CSM constipation went away. I think you may need to live on prunes while taking CSM,

Sep 032007
 

I wrote this a couple of weeks ago and forgot to post it.

I was recently prescribed Azithromycin to treat Bartonella. This time it will be 30 days of 500mg. This treatment jogged my memory that my Bartonella rash disappeared to never return after a routine treatment with Azithromycin (the z-pack; 500mg for 3 days) by my regular doctor. I had wondered if this treatment cured me of the Bartonella. Unfortunately, I think one of the classic symptoms of Bartonella is shin pain, and I started having some once starting Levaquin (see more below). Of course on the negative side is the Canadian Lyme Disease Foundation: “In the co-infected Lyme patient, eradication may be difficult.”ref. regardless, if a significant dent was made with a couple of days worth of treatment I am hopeful that a more concerted treatment with Azithromycin and Levaquin will take care of the problem.

The shin pain from Levaquin is a little cause for concern because I believe that the drug carries a black box warning for permanent tendon damage. And from the label: “Ruptures of the shoulder, hand, Achilles tendon, or other tendons that required surgical repair or resulted in prolonged disability have been reported in patients receiving quinolones, including levofloxacin.” I personally think the shin problem is disease related since I seem to recall it happening before any treatment began. As it turns out the pain disappeared as soon as it came so no worries from the Levaquin and my tendons.

Aug 072007
 

I am now wrapping up my final days of IV Clindamycin. For this medication the doctor normally starts at 300mg and then jumps to 600 and 900mg. Since I was doing “so well” he started me at 600mg, and then bumped me to 900 after a week. I think his caution was because the Clindamycin really hit him hard (and I guess other too), but overall it does not impact me nearly as much as the Rocephin. This could be a result of the drug and/or it could be that I progressed so far on the Rocephin. I am leaning towards the former. Looking it up it doesn’t look like it crosses the blood-brain barrier well (Cleocin Phosphate/Clindamycin), and since my symptoms have been mostly neurological the blood-brain barrier issue is the most likely cause for the reduction in Herx reactions. I will be switching in a couple of days to another drug (can’t remember the name, and that is with the memory improving ;-), and as I recall the new one will cross the blood-brain barrier. I suppose a good one to end the IV therapy.

Jun 212007
 

Old news, but the latest “testing” after one week of antibiotics (with the caveat that I had started the Buhner protocol over a month ago which certainly helped significantly – I’ll write about that later) is that I am making significant progress. My spleen and liver are almost back to normal size. Most significantly I can stand with feet together and eyes closed indefinitely without losing my balance. Before treatment I couldn’t stand more than about a second in that position before toppling. Additionally, I can now walk toe-to-toe without falling.

I had one day where I felt really good, and back to normal. Most days I just feel drained and blah. Most of the problems have been mental with fatigue, etc. I suspect there is a limit to the neurological issues since Rocephin does not cross the blood-brain barrier very well, and will get worse with a new antibiotic. There has been a recent resurfacing of some joint problems in my foot. I assume that this is related to Lyme die-off in that area.

 

Jun 062007
 

Image of the "PICC" line in left arm
Certainly long overdue the treatment has now begun, and while I may not find IV antibiotics the ideal it is how we are proceeding for now. A “PICC” line was inserted, but only 25cm worth (so not a true PICC line that goes almost to the heart), and so the line ends about at my shoulder. The line didn’t hurt going in, but ripping that tape off when they change the dressing does hurt (I should have shaved my arm first!). The first round of antibiotics is 2g of Rocephin. The doctor said he modulates the antibiotic about every two weeks. I get to go home with 6 days worth, and on the seventh day I have to go back for a dressing change and then to restock my supply. I don’t really know what to expect as far as Herx reactions, but so far I feel fine (but it is still pretty early in the treatment).