I have just "come down" with what seems like a new lyme infection and would love some advice!
I spent a lot of time outside Michigan, in the backyard of someone who I later found actually has deer on the property. (Yes, stupid.)
A few days later, I found a scabby type sore on the back of my shoulders, where I rarely look or touch. I don't know what it looked like before that.
Now, about 10 days later, I have the following symptoms:
irritability/rage, cognitive decline (reading even Harry Potter would be too hard, writing impossible), depression, feelings of everything falling apart, continued feelings of brain inflammation/compression, flushed face, stiff neck, insomnia, waves of chills/fever, stiff neck, sore throat, vision decline, "fireworks" in the eyes (looks like sparkly bugs swimming in various directions), strongly increased mold reactivity.
I feel lethargic in terms of wanting to do things, but not tired. I don't even feel like lying down.
I had some of these symptoms (to a much stronger extent) about a year ago when i took a small amount of doxy (50 mg). I think conceivably I might have some kind of latent lyme infection, which I was thinking I was going to try to address after I had a total handle on the mold.
I actually had doing fantastic (100% of functioning in EVERY respect) just addressing mold over the past six weeks, since visiting Erik Johnson (erikmoldwarrior) and learning his mold-avoidance strategies. It's taken a lot of work and lifestyle adjustments, but getting full functioning back was a real miracle.
(I have absolutely typical CFS in every respect, have been ill for a dozen years, never had a remission before, and last year was comatose in bed for 18-22 hours a day. Getting wholly better through diligent means was pretty amazing.)
I'm hoping that by continuing to avoid mold, my immune system will be strong enough to help to fight this (possible) lyme infection off at the pass. Obviously I want to address it in every way that I can.
My CFS doctor (Dr. Keith Berndston) ordered a Western blot and CD57. I don't know how long they'll take to come back. And they may not be accurate.
Keith is a very good and progressive CFS doctor, but hesitant to treat with antibiotics for a long period of time. I'd like to see a good LLMD, but they seem really hard to get in to see.
I'd rather not take doxy or minocin since they had really horrific effects on me last year even at small doses. Maybe with an improved immune system it would be better now. I have some of that available now though.
I'd much prefer to take amoxicillin or ceftin, since I've tolerated those drugs before. There seems to be some disagreement about whether they're appropriate for lyme though. I also would need to convince my doctor to prescribe it.
I'm thinking I'm going to go buy some oregano oil, since that has seemed to have positive results in general in the past (though I'm not absolutely sure what it was killing).
I have two big bottles of some good-quality colloidal silver on hand. I don't know if that would be helpful.
I get iv's of VItamin C twice a week. In high dose (I usually get 50 cc's), this supposedly converts to hydrogen peroxide in the cells and kills bacteria. The first few times I did this high dose, I got a die-off reaction similar to that with doxy. Since then, I've tolerated it fine. Yesterday, we ramped up the dosage to 75 cc's. I got increased chills/feverish feelings afterwards, though I'm not sure if that's due to the disease progression or die-off.
So.....thoughts???
And if you think I should go with a drug, dosages and length of time?
Thanks much for your help!
Best, Lisa
Posted by Lymetoo (Member # 743) on :
You need to find an LLMD if you want to get well. Sounds like lyme and probably bartonella.
Who cares if LLMD's are hard to get in to see? Make an appointment and wait!
I don't know of any LLMD's in the Chicago area. There is one in WI and many in IL travel to dr C in Missouri.
I'll PM you some info.
Posted by Lymetoo (Member # 743) on :
I can't send you any info until you enable the private messages in your profile.
Posted by slayadragon (Member # 16153) on :
Thanks. I enabled the Private Messaging.
Posted by adamm (Member # 11910) on :
That's definitely Lyme--if you find a doctor now who knows how to treat it (i.e. treats much more aggressively than is recommended by the IDSA guidelines), you can recover.
I'll PM you the info of the ones in MN and WI.
Posted by slayadragon (Member # 16153) on :
Thanks much for the information.
I actually am traveling around the U.S. a good bit at the time, and thus have a lot of flexibility in who I might see.
Does anyone have a recommendation of someone who's very good but might be able to see me soon?
Thanks!
Posted by CherylSue (Member # 13077) on :
Hi Lisa,
I was surprised to see you on Lymenet. Welcome! See my doctor in Springfield, MO. He was recommended to me by the Michigan Lyme Assn. PM for info. It's Munch's and her brother PJ's doctor, too. Several on this board have been to him, as well.
It's an 8 hour drive, but there is an airport in town. Not a bad drive. Very scenic once you get to Missouri. We've been taking some side trips which are interesting.
Anyway... are you back in your house yet? I've yet to address the possible mold in our house. I'm saving some money for remodeling, carpet, etc.
I'm back to work and loving it. I'm doing methylcobalamin B12 shots, and small dose Flagyl with Nystatin. I'm functioning between 85% and 90%.
Best to you and yours.
CherylSue
Posted by oxygenbabe (Member # 5831) on :
Good you're on lymenet. Ceftin got Pam Weintraub well, after many other abx helped--high dose amoxicillin helped her, too. These are good abx for lyme. Good luck figuring out which specialist to go to .
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