I have long-term Lyme, Bartonella, and, apparently, Babesia. (I've never had a positive test result, but I have symptoms and have responded to past, brief, treatment.)
Some new stuff cropped up, beginning in March. I've been very sick, and I don't know if it's one or more of the above becoming more virulent, or a new disease altogether.
My SED rate has been climbing. In all my years with the tick diseases, I appeared to have a low SED rate. I also have joint pains that are unusual. I'm having a lot of digestive problems, also unusual. I was in the ER Friday morning, thinking I was having a heart attack. I had sharp, radiant pain in my mid-chest and upper back. My thyroid disease is getting worse even while on treatment.
It's like all h*ll has broken loose.
I'm not on ABX. I haven't had much of them. I have severe intolerances to most. I didn't respond to IV doxy after a few days, it seems.
I'm using Rife (Please be fair, and don't attack my treatment method), but I haven't used it for months since things went haywire.
I had two Hep-B shots, one in March, one in April. Maybe they set something off. I don't know.
My Lyme doctor ran no less than 26 tests--24 blood, one urine, and one stool test. My gastro doc ran blood tests and sent me for CT scans with contrast. I got more tests in the ER. My blood calcium is low, and that's never been a problem. Other values were off, too. I have yet to receive most of the results.
I'm not doing anything differently. I'm scared.
I wonder: autoimmune disease? digestive disease? I tested positive for IgG Mycoplasma, but I don't have current infection, according to the lab. I wonder about worms, too, since I noticed something bizarre when I took my stool test. (I don't want to be graphic.)
Thanks for listening. I had to get this out. Meanwhile, I'm planning to go back to school--to become a PA! I have great determination, hope, and faith.
I also have little money and am intolerant of many herbal/natural treatments, too.
Steph
[This message has been edited by Starphoenix (edited 13 June 2004).]
The gut stuff, inflammation, and joint pain -- sounds intestinal, at least in part. My husband had this on and off for years, with occaisional intense and incapacitating pain in the chest area, as you describe. It resolved, eventually, after treatment for C difficile, H pylori, yeast, and using Zhang's therapy (it was the garlic that did in the yeast, I believe) How are you on leaky gut?
Parasites could be a good bet too. And, given the time of year, I also wonder about mold. The timing with the shots does sound suspicious. Might be several things that you've had in the background, with a trigger to set off a reaction.
You'll know more when the tests come back, I hope.
I know you don't want to hear this, but this is me speaking from bitter experience:
Be terribly careful about school. Do less than you think you can. I finally wore my long-suffering adrenals out, trying to work and do school etc. It's taken forever to get them even marginally back online. In the end, it was fatigue and fatigue-related brainfarts that put me on disability; I could cope with everything else.
Good luck, keep us posted.
I'm editing hear to say that I agree that TBDs are probably your primary problem. But the rest -- leaky gut, parasites, reaction to the vaccine -- can have a profound effect on how well your body can handle the TBD. In my experience, anyway.
[This message has been edited by minoucat (edited 14 June 2004).]
I'm quite sure I have leaky gut. I think that's been the cause of my MCS.
I still don't have most of my results. I'm trying to be patient....
All the best to you, Steph
I was wondering if vaccinations and such somehow cause the disease to go into high gear.
I also have a friend who, after her flu shot, fell apart worse than me. She was virtually asymptomatic before her shot and was told when she came up with all the classic Lyme complaints including fatigue and cognitive deficits that she had rheumatoid arthritis.
I wish I weren't so reactive (negatively) to ABX and herbs. It's ironic; the Lyme, etc., caused the sensitivities, but now I can't use many things to treat it! My docs (PCP and Lyme doc) know to give me as little as possible. It puts me in a bind.
I had exploratory pelvic surgery in February and then the two shots. Maybe it is "only" the tick diseases and not something new. I think these things make the germs more virulent somehow. And I must get another shot in September....
Well, I'll see what the tests turn up, if anything, and go from there.
Hey, Cave76. I love that word, wonky. I have to add that to my vocabulary. I use the word "bazooka" in that context, like "It all went bazooka."
[This message has been edited by Starphoenix (edited 14 June 2004).]
I've had two attacks since then, although there has been controversy as to whether or not I've ever had it. I'm sure I've had it at least once.
Anyway, my organs looked nice and pink. I got to see the pictures.
Steph
Again...what are your reactions to antibiotics? A herx can feel like you're going to die...absolute misery....but it's an unfortunate part of the healing process...like sickness with chemo....with lyme you feel rotten, which means you're getting better.
I"m not insisting that you are experiencing herxheimer reactions, just curious as to how you respond to abx...
Thanks,
Carol Ann
My Lyme was triggered by Tetanus/Dyptheria vaccination also. I spent 6 month in the hospital as a baby after dyptheria vaccine.
3o years later I moved to states and didn't know that tetanus vaccine includes dyptheria.
I'm also allergic to most abx after about 2 days of use - I can't breathe and usually develope a blood clot (mostly in lungs or brain). So I had no abx treatment in 10 years of Lyme.
But 3 weeks ago I started insulin potentiated therapy, which uses tiny amounts of abx and flagyl once a week. I herxed reaaly bad for 6 days (to the point of "I don't want to live anymore), but now I'm much better.
I have to see the situation after 5 more treatments. My doc does it for 8 weeks to see if it worked. So I don't know if it is just temporrary improvement.
Before I have started this therapy I went thgrough NAET - allergy ellimination technigue at my chiropractor's office. May be that also helped.
It sound awfull but sometimes I get jelaus of other Lyme patient who have the "luxury" of taking abx daily for long period of time.
Hope you get some answers to your current situation and will be able to pull through it.
Wish all well!
Punkie
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I don't want to get into this much because I say, to each his own: I, personally, don't believe in long-term use of ABX anyway, for a few reasons. That's why I bought a Rife.
My husband and I are in fairly dire financial straits. We live hand to mouth and are in overwhelming debt. That's why I can't afford to see a holistic doc (must take insurance) and can't afford most supplements. I don't tolerate most natural treatments anyway. It's the darn MCS.
I deeply relate to your struggle, Punkie (and love that name!), and I hope you find relief soon.
Steph
Starphoenix.....please consider Benicar and the Marshall Protocol...it is designed to stop the over reacting immune system.
Kent
I don't know anything about those protocols. I haven't been at this site much recently.
If it's herbal, I can't take it. I'm severely reactive to most drugs and herbs. Also, if it costs more than like, um, $1, I can't afford it.
It s*cks.
Steph