So....... Here is what I learned:
There are two possible reasons why my symptoms have gotten worse since I started the Doxy and Tindamax:
1. It is working, and it is stirring up the lyme toxins (die off)... This could be the "worse before better" that most people have. Hopefully this IS it, and we just need to establish exit routes for the toxins (a drainage remedy kind of like a detox).
OR
2. I am incompatible to the meds. So we did another muscle test and it showed that the doxy was not working well with my body, nor were the B-12 injections.
My extreme weight gain is apparently very typical of lyme patients. You either gain or lose a bunch of weight really fast.... ???? My LLMD is hoping that the lyme treatment will lessen the inflammation of the TNF Alpha something something something... Basically we are hoping that the weight will even out as I treat the lyme. If not, we will look into it in a month. There is not really a "Lyme diet" so to speak--- just eating healthy.
Hair loss is normal for antibiotics. He didn't seem to be too worried about that. I'm unlikely going to lose it all. Just thinning :)
GOOD NEWS! The reason I don't have to go on IV antibiotics is because we aren't trying to "save my life" in a rush. I have clear, horrible symptoms, but I'm not in a life or death state right now. If I get worse, or I have MS type symptoms, then IV will be a last ditch effort to kill the Lyme, but it is more gentle on your body to just do an oral antibiotic/ supplement treatment protocol. YAY!!
The time line for the treatment is still 1-2 years (most likely) as long as the treatment is working properly. He hopes that with a drainage remedy, I will start feeling better and not worse! :D
Now for some really interesting things:
My saliva tests came back. My cortisol levels were extremely low in the morning and during the day, and too high at night. What this means is: I am in a depressed state, have extremely low energy in the morning and during the day and at night, my body is unable to fight of infections or restore itself. At night, your cortisol levels should be at 0, so that your body restores the higher level in the morning, giving you adequate energy levels to conquer the day!
In the morning, the normal range for cortisol levels is 13-24 nM, mine was 7. Around noontime, the normal range is 5-10 nM, and mine was 4. In the evening it should be 3-8 nM, mine was 4. and at bedtime it should be 1-4 nM, mine was 5. Low values are a sign of adrenal deterioration.
On the Lyme note:
My Western Blot did come back positive. The bands that were positive were IgG p 45, IgM p 23, and IgM p 41. (All of which are specific to lyme)
The Elisa Assay showed that B. burgdorfer was present, Immunodominant protein was high, Babesia was high. OspA+OspC was high, OspE was high, LFA was high, Variable Major protein was high, B.b. Sensu strict was high. B. garinii was high, B. afzelii was slightly high.
As far as exercise goes:
Since I am gaining still, I asked my LLMD what exercise I CAN do. He gave me a prescription for Lyme Rehab-Physical Therapy which says:
Please enroll this patient in a program of therapy to rehabilitate her from the effects of chronic tick-borne diseases.
Aerobic exercises are NOT allowed, not even low impact, until the patient has recovered. Aerobics can be damaging and must be avoided.
Exercise no more often than every other day, starting with every 4th or 5th day for one gentle hour.
Work to improve strength and reversed the poor conditioning that results from Lyme, through a whole-body exercise program, consisting of light calisthenics, and/or resistance training, using light resistance and many repetitions. Use minimal resistance. Avoid free weights, bands and large exercise balls and favor machines (especially hydraulics) that can guide limbs through a prescribed arc.
So finally, my treatment protocol:
Antibiotics:
Tindamax 2 weeks on, 2 weeks off cycles (1 twice daily)
Cefaroxime 500mg (1 twice daily after breakfast and dinner)
Probiotics:
Yeast (1-2 twice daily with antibiotics)
Cultarelle (1-2 in between antibiotics/lunch)
Drainage of Toxins:
Take together away from food in a little water. Hold in mouth for 1-2 minutes before swallowing twice a day.
Itires (lymphatic) follow instructions
Renolix (kidney) follow instructions
Cortisol Levels:
Lower at nighttime: Seriphos (1-2 15-30 min before bed)
Raise AM and noon: Premier Adaptogen (2-3 capsules in AM with or without food/meds and 1-2 capsules in early afternoon)
Energy:
Mix BND, B-vitamin mix (1/4-1/2 tsp before breakfast and dinner or earlier. Hold in mouth 1-2 minutes before swallowing. Mix with water/juice)
Hydroxy B-12 injections (1cc twice weekly)
Immune System:
Transfer Factor Multi-immune, CD-57 count (For one month take 2 twice daily 30 before breakfast and dinner, then switch to 1 twice daily)
Transfer Factor Lyme Plus (2 capsules 30 minutes before breakfast)
5-MTHF (folic acid): (3 per day for one week, 4 per day until gone, switch to 5mg size and take 1 per day)
Babesia:
A-Bab: Work up to 15-20 drops twice daily. 30 minutes before breakfast and dinner. Can take with Transfer Factors. See instructions.
Artemisinin: Start with 1 capsule twice daily just on weekends. Take with a little grapefruit juice and on an empty stomach. Do not take with A-Bab.
