Update from dr’s appt.

[Eileen]

Hello,

Saw inf. dis. dr. yesterday. Decided to not change current dosages of antibiotics seeing there is some improvement since starting treatment for LD this past June. I am actually starting to go out again and not flopped on the couch all day. That is so encouraging for me as I have two active boys and doing this by myself. My underlying depression due to this is slowing down too. My little brother died suddenly last week and if this doesn’t lower my ability to sustain progress, I will be surprised. The stress and shock of this. I’m doing ok. Numbed out emotionally. Only way to cope for now.

What was added is Mepron for a short stint. When finished with Mepron, introducing 3 mgs. of LDN. I took LDN for a few nights about 1 1/2 yrs. ago and the nightmares were downright scary, vivid, and insomnia is still a big part of my problem. Cognitive impairments have increased and are rearing their ugly heads. Reading speed is slow, mixing words, transposing numbers, the cob webs in the head thing. Like I’m looking through a veil and can’t clear it out.

Also RBC, hemoglobin and hematocrit are elevated slighty and this hasn’t been my typical pattern as I’m monitored closely with labs. My son’s dr., Dr. J., asked if there is any family history of Hemacromatosis (sp?) which I am not aware of.

Can anyone chime in on the elevated rbc stuff?

Still working it and will continue to push forward to remission.

Eileen

[Parisa]

Eileen,

Sorry to hear about your brother. Be aware that Mepron can mess with your emotions so be aware of that especially with dealing with a recent loss on top of it. I’m glad to hear that you are starting to see some improvement. Nice to have the energy to get off the couch.

Since the doctor asked about a family history of hemachromatosis, did he do any iron binding tests? My husband had low hemoglobin but a high ferritin count and we looked into hemachromatosis at one point. With treatment (especially for Babesia) that all returned to normal.

[Kash]

So sorry to hear of your loss.
A couple of months ago I was on Bicillin shots and it temporarily gave me a boost and a month of normalcy. That felt so good to get off the couch and going!
Mepron did mess with me a bit, it did work. Don’t know much about the blood issue, just wanted you to know I am sorry you are grieving.

Barb

[Trudi]

@Eileen wrote:

My little brother died suddenly last week…

Dear Eileen–
My very deepest sympathies. My thoughts and prayers are with you–
Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

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