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.
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