Passed the test

The compounded azithromycin came over the weekend. I took one dose today while I was at an appointment with Dr. Z. No hives! Still waiting on the compounded minocycline. Hopefully it will come in the next day or two.

First visit to LLMD

On Monday, 9/20, I had my first visit with LLMD Dr. M. The appointment lasted 2 1/2 hours. Dr. M took my history, gave me a physical exam, and reviewed my Lyme testing record and what I had already done in the way of treatment. She agreed with my GP's diagnosis and treatment of my Lyme and anaplasmosis, and told me that my failure to respond most likely means that I have one or more untreated coinfections. The two she thinks I have are Babesia and Bartonella. She wants to start the Bartonella first, then phase in the Babesia treatment after several weeks. Here is her plan until my next appointment on 10/25:

Minocycline
start first -- 2x daily with food (avoid calcium when taking pill -- reduces absorption)
***when you do this, discontinue doxycycline

one week later --
Azithromycin -- M-F only, once daily with food
Tinidazole -- weekends only, twice daily

She wants me to take Mepron for Babesia, but I have to check and see if it can be compounded without fructose (I have fructose malabsorption). It will be a few days till I can start the Minocycline since my compounding pharmacist had to special order it. I will post when I start it.

tests she ordered:
from LabCorp:

• Anti-DNAse B Strep Antibodies
• Lyme Ab, Total/IgM Responses
• Thyroid Peroxidase (TPO) Ab
• Antistreptolysin O Ab
• Lyme, Western Blot, Serum
• Celiac Disease Panel
• Antinuclear Antibodies
• B12 and Folate
• Rheumatoid Arthritis Factor
• Sed Rate, Westergren
• Vitamin D, 25-Hydroxy
• Anti-SSA
• Anti-SSB

from IgeneX:

• Babesia duncani IgG & IgM antibody
• Babesia FISH (fluorescent in-situ hybridization)

I still need to get these drawn -- their lab was running about an hour behind when I finished my appointment, so I decided to do the labs another day.

I liked Dr. M. It's the first time in a very long time that I have not felt like a minority patient. Dr. M told me several times that she had seen patients with my same health issues. There were no comments about how "complicated" a patient I am, which was so nice -- those always make me feel like the doctor would rather be doing anything else but taking care of me. She has a nice manner, too -- unhurried, straightforward, and with a sense of humor.

Two days later, I'm still coping with the fallout -- greatly increased pain and fatigue from the appointment, but also the hope she offered me that I might still be able to get better. That may sound strange -- I do want to get better, more than anything, but it has been so long, and I am so tired. Having this illness is like being trapped in amber -- it's hard to keep track of the passage of time, let alone envision a future in which things are different. So, I'm just focusing on existing for now. I think the hope will come naturally if I start responding to the treatment.

Before the beginning

Since I'm starting this blog in medias res, I thought I'd post some backdated information about my diagnosis and treatment.

Diagnosis
I was diagnosed with neuroborreliosis in January 2010 by Dr. Z, my GP. Dr. Z ordered a Comprehensive Lyme Panel from Igenex. This included

• IFA, IgG/IgM/IgA
  

• Western blot, IgG and IgM
  

• multiplex PCR

Only the Western blots were positive. I had six IgG bands and three IgM bands -- notably, not in a combination that allowed my case to be reported to the CDC, but I'll save Lyme politics for another post.

Treatment
As Dr. Z had limited experience treating Lyme, he consulted with a local LLMD, Dr. S, about my treatment. I had a Bard PowerPICC put in on 2/23/10 (happy birthday to me) and started treatment on 2/24/10.

Over the first month I had the PICC line, I developed allergic reactions to Tegaderm, Opsite, and Statlock dressings, foam tape, surgical tape, chlorohexaprep, skin prep, and to the line itself. I already knew I was allergic to latex, but this new run of allergic reactions mystified me as all the tapes and dressings were latex-free. After hours of searching the Internet looking for answers, I found the SpiroChicks blog. This is a great blog co-written by several Bay Area women who are all being treated for Lyme disease. Several of the blog's posters had had similar problems with their dressings (this is apparently common for Lymies), and they had great suggestions about alternatives. I took their advice and switched to SorbaView dressings and plain alcohol for dressing changes. I also did some research on my own and was able to switch to a Bard Groshong NXT ClearVue silicone PICC. Because of concerns about possible reactions, the line was left unsutured. This did not cause me any problems.

(Note: for anyone else who uses this information, ask in advance if your hospital stocks the lines and the dressings. Mine stocked neither. They were willing to special order the line for me, but I needed to bring my own dressing when I had the line switched.)

These measures helped a lot, but I continued to have redness and itching under my dressing. After my home health care nurse observed what looked like the beginnings of an infection around my line, I had it removed on 8/8/10. I'm now on oral antibiotics.

What I have tried so far:

Antibiotics and other medications
Rocephin IV

• started 2/24/10 -- 2g daily
• switched to pulse dosing (2g daily M, T, W, Th; no meds, F, Sat, Sun) week of 5/10/10.
• reported relapse to Dr. Z on 6/2/10
• returned to daily dosing on 6/2/10
• discontinued on 6/29/10

Doxycycline

• first dose on 3/21/10 while in hospital -- 200 mg IV
• continued on 200 mg IV daily
• stopped on 4/27/10
• restarted with pulse dosing (200 mg BID, Sat & Sun only) on 7/24/10
• 7/31 & 8/1/10 -- tried PO doxycycline to see if I could tolerate it -- yes
• continued with PO doxycycline after PICC line was removed 8/8/10

Hydroxychloroquine PO (brand name: Plaquenil)
(compounded)

• started 4/23/10 -- 200 mg BID
• need to take with food -- otherwise, severe heartburn
• stopped 6/9/10 per Dr. Z after 6/8/10 labs showed thrombocytopenia. Platelets normalized with discontinuation of drug. I have in my notes that Dr. Z wanted to resume it at a lower dose if platelets normalized, but he never did this.

Metronidazole PO
(compounded)

• started on 2/28/10 -- 250 mg TID, once a week
• increased to twice a week in mid-April due to chronic yeast infection
• discontinued when I started tinidazole

Tinidazole PO
(compounded)

• started 5/9/10 -- 500 mg BID
• Works better than metronidazole for yeast infections, fewer side effects. I'm still taking this.

Fluconazole PO
(compounded)

• started 2/28/10 – 100 mg, once weekly
• increased to twice weekly 5/1/10 due to chronic yeast infection
• I’m still taking this.

LDN (low dose naltrexone)
(compounded)

• started 1/17/10 at 2 mg nightly
• increased to 4.5 mg nightly on 1/24/10
• discontinued 5/15 because of nightmares

Actos

• took once on 2/24/10 – pitting edema in hands and feet, urinary retention, increased BP, headache. Did not take again.

Welchol

• started 4/13/10 – dose after introductory taper was 3 x 625 mg BID
• discontinued 9/3/10 when samples became unavailable

Xifaxan PO

• for SIBO – 200 mg TID
• started 3/28/10; stopped week of 4/19/10.

Herbs
I'm using an herbal Lyme protocol described in a book called Healing Lyme by Stephen Buhner. In addition to the information he has provided there, he also answers questions about the protocol on Planet Thrive. I learned a lot from reading through the questions and answers.

Right now, I am taking Cat's claw, Japanese knotweed, Sarsaparilla, and Artemisia (this one is for a suspected Babesia co-infection). I decided not to try Andrographis because it seemed to be the herb that caused the most allergic reactions, and I had to stop taking Eleuthero ginseng because it kept me awake at night.


Supplements
I'm also taking several supplements. Some are recommended by Burrascano and Buhner; others were prescribed by my doctor.

nervous system:
Alpha-lipoic acid 1200 mg daily
Acetyl L-Carnitine 500 mg daily

migraine prevention:
B-2 400 mg daily
CoQ10 400 mg daily

bones & joints:
BioSil (silicone with choline): 2 capsules daily = 5 mg silicone, 100 mg choline
Vegetarian Glucosamine/MSM: 3 capsules daily = 1500 mg glucosamine, 1000 mg MSM
Calcium/Magnesium complex: 3 tablets daily = 500 mg calcium, 250 mg phosphorus, 250 mg magnesium

heart:
cod liver oil

I also take a multivitamin called GlucoBalance that is designed to stabilize blood sugar. (I have reactive hypoglycemia.) And, yes, that is a butt-load of pills to swallow every day! I have three separate pill containers for each weekday.

Starting

I have had this blog for a week now, but haven't posted. I have been worrying about getting everything perfect -- creating the best header image, making sure that I have all the link buttons I will ever want, choosing all the gadgets. I finally realized this morning that I just need to start, and the blog will evolve as I go. So, here I am.

I decided to put up this blog to track the progress of my treatment for neuroborreliosis after reading similar posts on Wellsphere by Dr. Phuli Cohan, an MD who is also a Lyme patient. I have found it difficult to find anecdotal information from patients about their treatment, and Dr. Cohan's posts really helped me feel less alone with my illness. I'm hoping that this blog will help other late-stage Lyme patients in the same way.

I was also impressed with the treatment record Dr. Cohan ended up with from her posts. My idea for this blog is to use it to track my treatment, symptoms, and reaction to the herbs and medications. Other stuff will probably worm its way in here too. I'll see how it goes, as it goes.