It's been awhile

So, since I last posted I had my blood sent to Fry labs in Arizona. Doc had thought I had Bartonella this whole time, along with Lyme.

Positive antibodies for Anaplasma. Perhaps this explains my low WBC, anemia (low RBC) not iron-deficient, low platelets, which are apparently the usual findings in blood work for someone with Ehrlichia or Anaplasma.

Substantial biofilm communities were also found in my blood. Finally getting some answers or a direction on where to go with treatment is a great feeling.

No new bloodwork since June or July due to lack of insurance, etc.

Food allergy test results back show a ridiculous amount of allergies. Kind of surprised. However, not many of the allergies are from things that I frequently (or ever) eat. As suspected, I am VERY allergic to coffee and still showing high reactivity to YEAST. What was surprising are my allergies to things like cauliflower, watermelon, all citrus fruits, carrots, squash... 

Brief stint of Nystatin in December. Will continue to take Nystatin as needed for yeast/fungal issues. 

Introduced Doxycycline in December. I really cannot tolerate these antibiotics! In terms of nausea. Seriously. I don't vomit while on the abx but the nausea is so severe even at the low dose of 100mg. 

Next step is to introduce Malarone, an anti-protozoal/anti-malarial drug. I've been on Plaquenil for so long (about 4 years) and do believe it helped me. However, I would love to give something else a try seeing as how I'm still battling these bugs even after being on the Plaquenil for so long.

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I last saw the doctor in December. Through my own research I started Artemisinin and Lumbrokinase and Nattokinase (biofilm busters) in January. Cymbalta dosage has also been reduced to 40mg. I'm alternating the Lumbrokinase and Nattokinase every other day. Have yet to work my way up to my daily goal of 500mg of Artemisinin. I am rotating that out every 7 days to avoid resistance. I've been on pain meds the past few months, so as far as any herxing goes, it would be hard to tell. Though, lately, I have been having bouts of low-grade fevers and hot/cold flashes. Could be some herxing there. 

I don't think I gave Flagyl a fair trial this past fall, so I've restarted it. Starting at 250mg a day, would like to quickly work up to 500mg a day. Since my desire to take Flagyl was the reason for quitting the Plaquenil... I need to give it another go. 

As for clean-up agents, I've added chlorella tablets as well as vitamin C powder (1,000mg/day). Still continuing with D-Ribose powder for muscle pain. Switched multivitamin from New Chapter to Country Life.

Off antibiotics for now, testing coinfections

Well, started thyroid meds 2 weeks ago. NatureThroid brand, 1/4 grain. Can't say I see any effects yet. I may even feel worse? Hard to tell if it's the thyroid meds or it's being off antibiotics for first time in 8 or 9 months.

Have been off antibiotics for at least 3 weeks now. Plan is to shell out some hefty amounts of cash for a co-infection panel through Fry labs, which will also include a blood smear and IFA testing.

Since being off Ab, increased floaters in eyes and general eye irritation. Mainly left eye. Buzzing/numbness/vibration feeling in left foot. Kind of a pulsing feeling.

Lyme and what to do now...

Received Igenex results a few weeks ago. Appear to be equivocal. Have tested positive for one double-starred band, and one non-starred band (58). My doctor has decided that we will continue to treat this as Lyme disease. I'm still on minocin and zithromax, and doc wanted to add in Flagyl (cyst buster).

Now, I had read that nerve damage is a rare side effect of taking Flagyl, and also that it may interact with Plaquenil. So... long story short - I've quit the Plaquenil.

While waiting for the plaquenil to clear out of my system (has a long half-life of about 1-2 months), I've decided to start the Byron White formulas. I purchased the A-L formula and the A-BART (bartonella). Will start the A-Bart formula first, try it for a few weeks to get a feel for it, then add the A-L.

Quick recap of current supplements/medications:

• Minocycline, 200mg, every other day (started December 2011)
• Zithromax, 250mg, every other day (on days not taking minocin), since May 2012
• Banyan Botanicals ayurvedic herbs - Healthy Vata
• Cymbalta, 60mg
• Night: melatonin (small amount, less than .5mg), L-Glycine, GABA, L-Glutamine, Magnesium malate
• Buffered Vitamin C (with rutin), Vitamin D3, Malic Acid, D-Ribose, Multivitamin, Calcium citrate, the list goes on...

Off the Prednisone

Have now been off prednisone for about 1 week. My shin rash is slowly diminishing. I started taking 500mg of Taurine at night before bed and it seems to have helped my muscle pain significantly.

Stopped by the community health center last week for an ophthalmologist appointment. Eye dryness is minor said the doc after using the yellow dye. So that's good news. 


Continuing to take Zithromax though only about once a week because it does quite a number on my stomach. It has a long half-life, though, so dosing every other day shouldn't really be necessary. 


Lyme test results came back as "equivocal", so am now supposed to be getting tested for band 31 kDa. The journey continues...

The persistent rash...

My rash was gone. Then it came back. Story of my life, honestly. Hahaha. When I drop below 2.5-3 mg prednisone, the rash on my shin returns with a vengeance. I'm really not even supposed to be on prednisone right now (meaning, my current doctor did not prescribe it for me, it's just leftover from 2009 treating myself Dr. Ashley style. Yes, I know you aren't supposed to mess around with prednisone. Yes, I'm aware of the dangers.). I don't have insurance and cannot afford to go see the doc whenever this rash rears its ugly head.

Anyways, I've read extensively about the link between thyroid antibodies and rashes and the connection is clear. When I see the doc next I might see what he thinks about treating euthyroid Hashimoto's. Not many docs are keen on the idea but it's worth a shot. I'm thinking... lowest dose of Armour thyroid, which is a combination of T4 and T3.

Cannot tolerate 200mg minocin, reduce again

Since my stomach has been having issues, I have reduced the minocin again to 100mg once a day. I continue to take a probiotic supplement, Jarrow Formulas AF with 10 billion strains.

Had bloodwork drawn yesterday, and now I am going to start Zithromax Tues./Thursday 250mg once per day.

Bloodwork didn't show any major changes, though sed rate and CRP are still low, which is great. Neutrophil count is way up. Usually it's around 53% for me, and this bloodwork showed neutrophils at 69%. I've read that an increase in neutrophils can indicate a bacterial infection. So maybe it is the strep that is just taking up residence? I suppose we'll see after starting the zithromax. MCV and MCH are still elevated slightly. Platelets still at low end of normal at 206.

Sed rate = 2, CRP <0.3 mg/L.

RBC count still low at 3.8.

TSH at 1.44, Free T3 at 2.4 pg/ml (range:2.0-4.4), Free T4 at 1.04 ng/dL (range: 0.82-1.77).

RA elevated slightly at 15.4. ANA is still positive, no big surprise there only wish I could have afforded to get the titer for the ANA.

Ended medrol pack - increased Minocin

Well the Medrol pack is now finished and I'm on 2.5mg prednisone, hopefully tapering to none by the end of next week. The rash on my shin is now gone, but I still have some small spots on my upper back.

Yesterday I increased my minocin dosage from 100mg to my normal 200mg per day. I was taking 200mg of the generic stuff from December 2011 until the beginning of April, then switched over to brand name and it seems to be stronger so I lowered the dose to 100mg. Not sure if I'm ready to handle the 200mg yet, especially since I'm still on a small amount of prednisone, but we'll see. I'm a bit anxious to try out the Zithromax to see if it has any effect, but I think it would be best to wait a little bit and give the brand name minocin a chance to do its thang.

As far as today goes, I've noticed a significant increase in muscle pain and sacroiliac joint soreness along with that damn left knee pain that is almost a constant nowadays (as it was in pre-plaquenil days). 200mg ibuprofen earlier in the day didn't do a whole lot for the pain.