Category Archives: medication intolerance

Progress Report September, 2015

Hello To All,

I haven’t posted to my blog in months. I went through hell on antibiotics in the spring, and I felt like taking a break from it all this summer. On a positive note, I felt quite good from late June through August. Here is an update.

As I mentioned in the spring, I’ve been using a frequency generator (aka a Rife machine) for 12 months now to kill off the borrelia. My doctor is very supportive of this, but says that I need something to kill the dormant or cyst form of the infection. I tried grapefruit seed extract and that gave me horrendous headaches. Ditto for Samento and Banderol. I then tried Tinidazole. I lasted on that for three months and crashed hard with gut and yeast problems. I stopped the ABX, kept rifing and doing some serious detox over the summer and lo and behold, I felt pretty decent! In particular, I went back on three Pekana detox remedies (Apo-hepat, Itires, and Renelix). I’ve come to realize that these remedies are super helpful for me.

I started on the herb Cumanda this past month. I stopped it because it, too gave me horrendous headaches. My naturopath suggested that I try andrographis. According to Stephen Buhner, this herb also kills the cyst form of borrelia.

So, where am I after almost 4 years of treatment? I’m not yet recovered, but I have made progress. I’m just getting frustrated and impatient at how long this is taking. I want to go back to work. I want to have fun. I want my life back!

I was feeling a bit despondent this month. I went to see author Katina Makris talk about her recovery from Lyme. (She is the one who wrote Out of the Woods. She has a new book out and she is touring). I felt a renewed sense of hope after hearing her talk. Her recovery took a long time, too. But she’s doing great now!

I try to remain hopeful. I also try to remember that there are many pathways to healing from Lyme, and many people who do indeed recover. So I keep slogging away at it.

Best,

Laura

#Lyme Disease and Rife Machines Part 2

Hello to All,

I haven’t felt like writing in a while. I’ve been in a holding pattern waiting to see how I felt after several months of killing Borrelia with a Rife machine. This technology is pretty new to me and I’m trying to understand it better. I’m also trying to decide how much faith to put in a treatment that is so alternative.

When I last wrote, my doctor had put me on Teasel root. This herbal antimicrobial made me miserable even though I reduced my dose to 1/10 of a drop once per week. I had profound fatigue, headaches, muscle weakness, shakiness, and light-headedness even at this low dose. My doctor agreed with me that these were side effects and not worth it for me. We discussed alternate medications, especially ones that would be compatible with rifing. He suggested tinidazole.

According to people knowledgeable about Rife machines, using antibiotics is counterproductive to rifing. Antibiotics can cause resistance and drive the pathogens deeper into the tissues as they avoid exposure to the drugs. Certain ABX can be used intermittently while rifing, such as cyst busters like metronidazole or tinidazole. I just read Bryan Rosner’s book Lyme Disease and Rife Machines and he says this as well.

I’m doing a treatment protocol that increases the time and number of frequencies as you can tolerate it.  I’m following auto channels recommended to me. Auto channels cycle through groups of frequencies. I started with channel 466, then I added 467. I just added channel 468 on top of those two. That will cover about 100 frequencies against Lyme spirochetes, hatchlings, eggs, and Babesia. The nice thing about the GB-4000 is that it can run 8 frequencies at once, so you can cover a lot of ground.

As for my response, I had 30-hour flu-like herx responses to the treatments for a number of sessions. The herxes decreased so I added time and more frequencies until I herxed again. I just started the tinidazole, so we’ll see what that does to me…

Best,

Laura

#Lyme Disease Treatment: Herx or Medication Intolerance?

Hi All,

I’m very pleased today. I talked with my doctor and he thinks that the discomfort caused by the grapefruit seed extract wasn’t a herxheimer reaction, it was intolerance. I didn’t know that you could tell the difference, but he says there are clues. In general the guidelines are:

  • A herx reaction is generally marked by multiple symptoms such as malaise, muscle pain, fatigue, headache, and a flu-like feeling that lasts for weeks.
  • Medication intolerance is generally marked by isolated symptoms that resolve quickly upon discontinuing the medication.

I had intense headaches on GSE, even at very small doses. That shouldn’t happen. Also, the HA’s stopped immediately when I stopped the GSE. So I was intolerant! He suggested alternate cyst busting drugs:

  1. Metronidazole (I used this years ago and it caused awful nausea)
  2. Tinidazole (extremely expensive: $700/month)
  3. Rifampin (can cause liver problems. I know someone this happened to)
  4. Fluconazole, aka Diflucan. (This is my best option. I already take it for yeast problems, and it agrees with me. It isn’t as strong as the others, but I can take it for a prolonged period).

The nice news is that I feel good on my current regimen without the GSE. My headaches and neck pain are pretty much gone. I haven’t noticed bad night sweats. My energy level is improving. So this sounds like my magic combination for a while. I have a few other problems to solve, such as insomnia, chemical sensitivities, allergies, and periodic vulvodynia. But I’m relieved and I feel very hopeful that I’m on the right path.

The plan is to treat the Babesia for a minimum of 4 months, and stay on the ABX for Lyme for a while. Then I’ll switch over to herbals, probably for the long haul. I understand that long term maintenance is probably required for me. I accept the fact that I probably won’t be cured, but can achieve long term remission and live a “normal” life. I will be thrilled if this happens.

Best,

Laura

#Lyme Disease/Babesia Treatment: Antibiotics and GSE

Hello to All,

Three weeks ago, I started ABX treatment with Biaxin and Malarone, and I was doing pretty well. My energy is still low and I’m still having wicked bad insomnia (probably related), but my headaches and neck pain subsided! I’ll take any victory that I can get.

Then I added grapefruit seed extract (GSE) into the mix per my doctor’s instructions, 250 mg 2x/day.

Wham! The herx hit me. Daily migraines, lightheadedness, dizziness, worsening fatigue, trouble finding my breath at the slightest exertion. So I did my usual routine of detox and aklalinization:

  1. Lessen the dose of the offending medicine until tolerable
  2. Vitamin C
  3. Alka Seltzer Gold
  4. Lemon water
  5. Coffee enemas
  6. Epsom salt baths

GSE is known to break up biofilms and cysts where the infections hide. I’d say that it’s effective!

So my body has calmed down considerably. I reduced my dose of GSE to ½ of a 125mg pill per day. I will work up slowly as tolerated. My goals now are to:

1) Find the dose of GSE that challenges me without totally disabling me, and,

2) Keep trying sleep medications until I find one that is effective. (Unfortunately, the Trazodone I was using ceased to be effective after a few months).

So I trudge forward…

Best,

Laura

Lyme Disease Treatment and Fatigue

Hello All,

As I mentioned in a previous post, I started taking a new herbal antimicrobial  tincture called Quintessence from Bio Pure (Dr. Klinghardt’s company). This tincture contains five herbs popularized by the herbalist Stephen Buhner:

1)      Andrographis (modulates autoimmunity, protects heart tissue, and is anti-inflammatory for the central nervous system)

2)      Japanese Knotweed (antibacterial, anti-inflammatory, immune modulating, antioxidant)

3)      Ceanothus (for coagulation problems, sluggishness in the spleen, liver, and lymphatics. Also antimicrobial for certain coinfections like Bartonella.)

4)      Smilax

5)      Stephania (powerful for eye and ear involvement, balance problems, Bell’s palsy,  anti-inflammatory,

I started at 1 drop per day and am slowly working my way up to 30 drops 3x per day as directed. I’m happy to say that it didn’t disagree with me for the first few weeks. Then as I approached 20 drops 3x per day, Wham! The fatigue and malaise hit me like a city bus. I assume that I’ve hit a therapeutic dose and am experiencing die-off, aka, a Herxheimer reaction.

When you tell healthy people that you have fatigue, they say, “Oh yes, I get tired sometimes, too.”

Ahem. I politely try to explain to them the fatigue associated with Lyme Disease and die-off.  I say, “Remember when you had the flu? Remember how you couldn’t get off the couch for more than a few minutes and then you had to lie down again? And you felt like crap? Yah, it’s like that… but for days and weeks on end.”

Usually, my fatigue is mild. I have about 4 productive hours a day, then I have to rest in the afternoon,  take a short nap, and then I have some functionality in the evening again. But this time the fatigue is crushing. I may have a few mildly productive hours in the morning, and then I’m through. I HAVE to lie down. Ugh. I know some of you out there have it way worse than me, and my heart goes out to you.

I know that low thyroid and poor adrenal function also contribute to the fatigue. Unfortunately, when I take T3/T4 thyroid meds or certain herbs for adrenals, they are far too stimulating for me and exacerbate the heart palpitations. I’ll write more on this subject next time.

So what to do now?

  • Back off the Quintessence
  • Step up the detox with binders and vitamin C, use a sauna, etc…
  • Start taking Eleuthero (Siberian Ginseng) for adrenals and fatigue (given to me by my doctor)
  • Take Co Q 10 and L-Carnitine for cellular energy production and cardiovascular support.
  • Have a Bioset treatment. This can really calm a bad Herx reaction for me.

And when I feel bad enough I take Tramadol as needed. Tramadol is one of my rescue medications. Not only is it great for acute headaches and body pain, but it works wonders for feelings of general malaise and misery.

Best,

Laura

#Lyme Disease Treatment Update for May: Feeling Well

Hello All,

After a miserable few months this past winter, I’m feeling good again. I believe that some of the medications I took made me ill, mainly the Byron White ABART and ketoconazole. So, how do we know the difference between medication intolerance and a true herx response? I think often, we don’t.

If you feel unbearably bad on a medication, tell your doctor. Extreme herxing and detox reactions cause runaway inflammation and can be both painful and damaging to the body. Always be sure your detox pathways are supported.

So I decided to see a new doctor and get another opinion on my course of treatment. Just having a fresh set of eyes on a problem can make a big difference. The first thing she did was have me create a timeline of my treatments and symptoms. This was incredibly valuable because it helped me see what I was doing last year that helped me feel better.

I realized that I was taking a high dose methylfolate supplement (Deplin, 15mg daily), and a high dose of butyrate (8 caps of 600mg daily) last summer. I went back on both of those.

She started me on a Chinese herbal combination: minor bupleurum formula, for liver stagnation, and also Ceanothus (red root) for babesia and bartonella and lymph drainage. She also put me on Pau d’arco for candida, which unfortunately gave me indigestion.

After about a month my pain and dizziness subsided. I feel much better! Almost normal, in fact.

I just received my Gene SNP test results back. It’s no surprise that I have the MTHFR mutation, and detox pathway 1 and 2 impairment. I see my doc tomorrow and will discuss my results with her and learn what they really mean.

Meanwhile, I’m still dealing with at least 8 days of bad headaches per month, MCS, insomnia, depression, and fatigue. My doctor suggested that I’m at a good point to try biofeedback for these problems. I met with a practitioner who does neurofeedback and I’m going to try it as soon as I have the money.

More on SNP’s and neurofeedback next time.

Best wishes to all,

Laura

#Lyme Disease, Toxins, Activated Charcoal, and Food Intolerance

Hello Again To All,

I’m back after a long absence due to an intense detox or possibly an adverse reaction to medication. I believe ketoconazole was the culprit, but I may never know. So I apologize if it takes me a while to post comments or return emails.

During the crisis, my doctor recommended stopping all meds and taking the usual detox remedies of Pekanas, coffee enemas, saunas, vitamin C, Meriva turmeric, and something new for me: activated charcoal. She says one has to be careful using charcoal on a regular basis because it not only adsorbs (attracts particles to itself) toxins, but also adsorbs beneficial vitamins and minerals.

I tried 2 caps of charcoal in the evening and didn’t notice any benefit. Then I increased to 2 caps twice per day. Still no obvious relief. Then I started taking it 30 minutes before eating lunch and dinner and discovered something wonderful: it prevents me from getting food related headaches!

Two prominent mold researchers/physicians, James Schaller, MD and Ritchie Shoemaker, MD recommend a resin binder (cholestyramine or Welchol) 30 minutes before meals to bind up toxins in the bile. So I decided to follow this protocol with the charcoal. Voila! It may not be a long term solution, but it has reduced my headaches greatly. My Candida and food intolerances have obviously returned, so I need to deal with them. But the charcoal is saving me a lot of pain and allowing me to eat solid, nutritious food for the time being.

Dr. Schaller has a comparison of the effectiveness of common toxin binders on mold toxins on his website: http://www.usmoldphysician.com/articles/comparingmoldtoxinbinders.html

Comparing the Mold Toxin Binders

  • Cholestyramine showed the best adsorption capacity. It was quite effective at 85% absorption.
  • Activated Carbon had the second best mold toxin absorption at 62%.
  • Bentonite clay adsorbed minimally. Even when the amount of toxin load in the water was reduced to a low load of only 13 microg/ml, the Bentonite clay still only bound 12% of the toxin.
  • Celite was not effective even at the lowest tested FB1 concentration of 3.2 microg/ml.

So for those of us who require slower detox, charcoal is a good option. And it’s cheap, too! I was advised to take extra water and fiber to avoid constipation. I also need to take extra minerals, zinc, magnesium, potassium, and trace minerals to avoid depletion.

My next steps are to:
1) Have a few NAET/BioSET treatments to calm the food sensitivities,
2) Improve gut health and CAREFULLY kill off more fungus and bacteria,
3) Do genetic testing to determine SNP’s and methylation defects so I can detox and metabolize better,
4) Correct probable hormonal imbalances related to my age: the dreaded 45 and onset of what is most likely peri-menopause. (I’ve been having heart palpitations, nighttime sweats, and wicked insomnia. Yup, I think it has begun).
5) Support adrenals. I’m trying cordyceps, a Chinese mushroom herbal remedy.

More to come soon.

– Laura