Update on an old timer...

Discussion in 'Fibromyalgia Main Forum' started by lbconstable, Jan 7, 2012.

  1. lbconstable

    lbconstable New Member

    I'm not a regular contributor anymore. However I have been a member for many years and try to update every so often. So here I am. I'll do my best although I don't really know where to start...

    I have had ME/CFS/FM symptoms back into childhood. I have been able to get by most of my life. In my mid 30's the fatigue and brain fog increased to a constant state. About eight years ago (I'm 46 now) I was able to identify my illness as ME/CFS. As I educated myself, I realized that I also met the criteria for FM, although fatigue is much more significant for me than pain.

    Over the years I've tried many treatment regimens; modified diet, supplements, antibiotics, Heparin, colon cleansing, amalgam removal. I probably can't even remember everything that I've done. Almost all of it has been useful. Some things have become a way of life for me (diet modification, colon cleansing, and attention to toxin exposure). I embarked on a Heparin/antibiotic protocol that allowed me to recover 90% of my functioning. I did this for two years. I was able to discontinue the Heparin when I began Rich's simplified methylation protocol 4 or 5 years ago. I will be forever grateful to Rich! I did the simplified protocol for a year and then ventured on to Yasko's full protocol.

    I discontinued everything about 6 months later. I began to have inflammatory symptoms as a result of the full protocol. I was out of money and doing relatively well without the supplements and my daughter was having issues that required my full attention (and $). I have done relatively well although I have experienced a gradual decline over the last 18 months. Hard to quantify, but I'd say I'm at about 75 - 80%. Some original symptoms resolved and never came back (hypotension, low body temp.) One symptom, sound sensitivity, has never improved much, even at my best. My worst days are still markedly better than my best days were 8 years ago.

    In May 2011 I began seeing a local Lyme doc. I have been on an aggressive antibiotic protocol and supplement regimen (including L-methyl folate) since then. My physical stamina was put to the test in August by a family camping trip cut short by my husbands illness. I ended up packing and loading for a four day trip for the four of us. Driving 7 hours through mountainous roads. Sleeping (mostly not sleeping) in a very cold tent (my hip joints throbbing in pain) and driving another 7 hours the following day arriving home at midnight. I crawled in my warm, comfy bed and awoke the following morning feeling great! I saw my chiropractor 2 days later and my body was in the best shape he's ever seen it. I credited this physical feat to the Lyme protocol.

    In November my husband was diagnosed with stage IV Prostate Cancer. I have never experienced the kind of emotional and physical demand that I have over the last 7 weeks. In the beginning I was very inconsistent with my antibiotics and supplements and had to discontinue one abx that was causing me severe headaches. My husband is responding to hormone treatment and his health has reached a bit of homeostasis. So I am now back to putting attention and energy into my own health.

    So how am I doing? I didn't know how to answer my naturopath when he asked last week. I'm tired. Anybody would be tired. I'm functional and for the most part can think and don't have trouble with word finding. So I think I'm doing well. I think I'm doing a lot better than I would be if I hadn't embarked on this Lyme protocol last year. I don't have smoking gun labs that point to Lyme, which is not unusual in chronic Lyme. But they are suspicious and I do better on abx than off. So if it's not Lyme it's some other bacteria (probably multiple bacteria). I'm due for another Lyme test next week.

    Keep on keeping on...
  2. Mikie

    Mikie Moderator

    Thanks for the update. Hope hubby's condition continues to stablize. Also hope you get back to feeling better. Even a "normal" person would be exhausted with everything you've been through.

    Two-thirds of people with our illnesses have a chronic mycoplasma infection and that may account for your feeling better on the ABX. In any case, I took them for 2 1/2 years before I no longer needed them. I pulsed them and was able to stay off of them for longer and longer periods. Still, I would take them when I was sick or run down because mycoplasmas, like Lyme, never really go away. They can both form cysts deep inside the body's tissues and reactivate when we get sick or exhausted.

    Good luck to you and keep us updated.

    Love, Mikie
  3. spacee

    spacee Member

    So good to hear that you have improved to such a degree! Prayers for your
    hubby. Had a friend who did really well with the hormone shots...except for
    the hot flashes! May your hubby have the success you have had.

  4. lbconstable

    lbconstable New Member

    Thanks for your warm thoughts and prayers!

    Mikie, I did test positive for mycoplasma several years ago. I was on low dose doxy for the two years that I was on heparin. I didn't know that mycoplasma could revert to a cyst form too. I appreciate you sharing your knowledge that way. The abx that I had to discontinue recently was a cyst buster. Hopefully I'll rebuild my strength enough to resume.

    Healing thoughts,
  5. Mikie

    Mikie Moderator

    I've had to take the Doxy several times over the years following my Heparin/ABX/AV treatments. The mycoplasma will try to rear its ugly head when we get sick, run down, stressed or injured. It, along with Lyme and the Herpes Viruses, is the jackal of pathogens.

    Strangely, after just one peptide injection, I Herxed over and over and over again. I think it was a "mop-up" operation to clean up lingering infections. Once I developed Sjogren's, it's like everything went into relapse. Now, even the Sjogren's symptoms are better. They were gone until the Red Tide algae here in SW FL got so bad that it made me sick. It's moving downshore so I hope I'll get back to feeling well. But, I digress...

    You may need to go back on the Doxy for a bit. If you go back on it and have a Herx, you'll know you need it. BTW, ask the doc for a new Rx. Doxy is one of the few meds which turns toxic after the expiration date. Good luck to you.

    Love, Mikie