khrios

I realize my doctor was labeling every unsual case, a Lyme case. My test result for Lyme was equivocal, twice. My test resuts for Babesia was positive. I am certain I was bitten by ticks . I had goldens, we use to hike with them. I did not respond one way or another to the antibiotics for Lyme. No Herx, no improvement...tried different regimens. The one thing he gave me which helped was Cortef. I don't know by which mechanism it helped, but it helped me have less pre/syncopal episodes, gastric problems, nausea...

Interesting. I just did a search and you are right, my symptoms seem to fit. Is this a newly discovered disorder? Is it likely my new doctor will know about it? How does one get diagnosed?

I haven't posted since 2005, when I found a doctor who said I had Lyme's. It turns out, I don't. I need to figure out which testing direction to go next. This is where I hope I can get your help. I am going to a new doctor on Monday. He is an internist who works with a lot of CFIDS patients. I have heard he is open minded, meaning he will explore in a certain direction if I give him information. I have NCS, but that doesn?t explain everything. I have episodes, which no doctor can explain. During these, I experience: increased allergic reactions, tachycardia (not just upon standing), shortness of breath (as if I just can?t breathe right), frequent urination, diarrhea, skin itchiness (with or without rash), paresthesias, uncontrollable trembling (comes and goes), brain fog, intolerance to cold or heat, burning eyes, dry mouth, itchy/burning tongue, fatigue, trouble sleeping. These episodes can last for days, weeks?then somehow things calm down, until the next time. I can go for months without an episode and then boom. While I have the episodes I am more prone to syncope. Any ideas? Ann

I tried Lomotil for diarrhea once and had syncope, as a side effect, so I would rather not take Imodium, if at all possible. But, I may try just a little bit of it. I have been to two different doctors in the past month regarding this issue. The first was my PCP who ordered pheo 24 hr urine test and a cbc and a celiacs disease test. All were negative. After that he was out of ideas and said to try Biofeedback!!! Like that could stop the runs. The other doctor is an internist, who works with CFIDS, Fibro, & such type patients. He ordered a comprehensive stool analysis, but the results won't be in until late next week. The other test he ordered was the Lyme & friends test. Well, I tested positive for Babesia, a tick-borne parasite & equivocal for Lyme, but he thinks I have it. I am getting a second opinion on these results from an immunologist. Of course, none of this will stop the runs now, which is what I need. I have a paradoxical reaction to all benzodiazepines, so ativan is out of the question. The internist gave me a small dose of cortef, 5mg. It's supposed to help the fluids stay put. I also have been drinking Gookinaid, which is an electrolyte replacement powder. Ann

I am allergic to aspirin, so pepto is out of the question. I have been afraid to try Imodium, because it messes with fluid balances. I am going to try a smidgeon. Ann

My friend and I wrote a letter, and the doctor prepared a packet of information for the appeals panel. Hopefully, it will work. Ann

Yes, Nina, we used to email back when I first became ill in 2001. Then, I started feeling so well, I stopped posting of the forum. But here I am again. Regarding what the doctor is recommending for treatment, I don't know yet. This doctor is an MD with an alternative bend. He seems a little overzealous in his diagnosis and to jump into treatment. Before I do anything I am getting a second opinion from an immunologist. That is what I am working on. The Babesia test was positive. But, I think that just means I have been exposed. I want to make sure I follow the best course of action. Ann

My symptoms are so severe that I have lost 12 lbs already. I need to do something. I am exhausted and weak. I think I must have a bug in my gut that is causing the diarrhea and the autonomic symptoms are just there because that is how my body reacts. I had a comprehensive stool analysis two weeks ago, but the results won't be in until the end of next week. In the meantime, I don't know what to do to stop the diarrhea. I am afraid of trying Imodium, or anything like that. What have you tried for diarrhea? Ann

I was tested for Lyme's and the test was positive for it and for another tick-borne bug, Babiosa (sp). Apparently, they are both common in Sonoma County, CA. It is somewhat frightening knowing that I have had this since at least 2001. I have to start investigating treatment options. Above all, I want to get better and keep my job... I need the insurance...and I have a college-bound kid. Ann

The doctor stated that she has done what she could, and now it is up to my friend to deal with the insurance. I think docs get burned out of dealing with HMO's. Ann

Hi, I have a friend who needs Enbrel approved by her HMO. She has debilitating arthritis and can no longer use celebrex and such because it affects her liver. Her doctor wants her to take Enbrel, but the insurance has denied it twice. She is supposed to write a letter of appeal explaining why she needs it. I figured some of you may know what to say to get some action from the insurance. Please help, she is in so much pain. Thanks, Ann

I just received a call from my Gyn. I have been having heavy bleeding during periods for at least a year. I also started leaking breast milk. She said I have six fibroids inside my uterus that "have to be taken care of". I wonder if the aggravation of my autonomic problems could be due to the fibroids. Does any one know if fibroids can secrete hormones? Any experience in this area anyone? Thanks, Ann

Hi, Yeah, the NDRF site was extremely helpful when I first became ill in 2001. I have been managing my illness quite well with little to no medication, just life style changes. No hot showers or baths, no getting overfull at meals, always keep properly hydrated, keep away heat and cold, etc. Allergy meds as needed. Until now. Autonomic storms is a good way of putting it. I find them very debilitating. I am afraid that if I don't find a solution soon, I will lose my job. I went back to work six months ago. I used to be a social worker. When I first became ill, I quit working and went back to school, so I could work in a sitting at a desk type job...became an accountant. Unfortunately, the shaking keeps me home and in bed. If it was just the diarrhea, I could manage. I will try to find information on autonomic storms...see what turns up. Thanks, Ann

Hi, I have NCS and other symptoms, such as severe allergies, upper GI dismotility, hypovolemia, at times elevated heart rates, intolerance to heat and cold, nightsweats. For the past month I have been having these attacks -1st an adrenaline rush, then I start shaking, then I have severe diarrhea, rinse and repeat. This state could last from minutes to days, with the uncontrollable trembling on and off. My doctor is baffled. Has no idea what it could be. He is willing to learn, if I bring him research and information. Can you help me find information which explain these episodes and what type of testing and treatment is required? Has anyone else had a similar experience? Thanks, Ann