It went ok, My platelets have dropped to around 115, so there was alot of blood, but everything went fairly smooth, another night of nightsweats and terrible headaches, haven't slept much this week, but hopefully/fingers crossed this will be it. My last ACTH test came back low again, and high very level of protein..not really sure what that means, but I saw my primary yesterday afternoon, who has done a incredible job with me so far, she told me that most Infectious disease doctors really don't believe in chronic lymes, so if this guy is treating me for it, he must really believe that what the problem is. The infectious disease doc told me again, give this treatment 7-10 days and if we don't see any results, he will send me down to mayo. I have a home care nurse coming in a few hours to go over everything with me and take more labs. They are going to come once a week for a dressing change and labs. My wife got suite tickets to the twins game today from her boss, so hopefully I will feel ok this afternoon and we can have a nice little date today. We have a babysitter coming, its been along time since we have done anything together. I know I need it, but she probably needs it more, taking care of me, a 9 yr old, 6 yr old and 2 yr old twins. She's been my rock these last couple of months.
Last edited by justwannahunt; 04-14-2012 at 04:03 AM.
I just happened to be watching Dr. Phil yesterday and he had a woman on there who is very sick with seizures and probably lyme disease. There wer 2 additional women(one is a producer for the Dr.Phil show)who had had lyme disease. There were 2 doctors on there-one from John Hopkins who doesn't believe in Lyme disease and an ****** lady doctor from Southern California who treats lyme disease. The other woman besides the producer woman is a reporter on tv in San Diego who was so so sick. If you are perhaps interested in finding out more, you could probably contact the Dr.Phil show and ask them the name of the doctor in so cal. This doctor is going to treat "pro bono" the woman on the show having such extreme seizures. Thought you might be interested in hearing this. Take good care.
The Following User Says Thank You to abmarino1 For This Useful Post: Mojo37 (04-14-2012)
Good to hear that everything went ok. Now go out with your wife and have some fun! You both need it! It is always good to take a break and try to forget about feeling sick. Weather permitting I am planning on taking my boys fishing tomorrow. I haven't been able to do a whole lot with them since I got sick but I don't waste a second of my life if I am feeling "ok" and take the boys out on nature walks, aquarium, wildlife viewing, etc.
A very good friend of mine lives in Minnesota and told me that Lyme disease is rampant up there. Even his dog had it.
abmarino1,
I keep hearing that CA has very good Lyme disease specialists. I wish I lived there because I really believe that I have Lyme. I've been bitten by a lot of ticks! Thanks for the info.
The following user gives a hug of support to Mojo37: abmarino1 (04-14-2012)
I don't recall exactly how low my vitamin D level was but the doctor told me it was really low and placed me on supplements once a week for 8 weeks. I now take over the caounter vitamin D and it helps a little with my pains.
Was it "within range low" or "out of range low". You say "low" so maybe it's within range? The levels is pretty wide....I actually found out that i myself was severely deficient so I"m doing a heavy dosage of D and will re-check the levels next month.
I was "out of range" low. I took vitamin D supplements (huge green gel capsules) for 8 weeks. I have not been tested again to see where my vitamin D levels are at but I am taking over the counter vitamin D supplements. It helps quite a bit.
Hope you guys are all feeling well today, my picc line failed after 4 days, the doctors are saying there is so much inflammation in my body my blood vessels are clamping down around the line, acting like a touriquet. The line was taken out yesterday evening. Referrel being made to the the mayo clinic this morning. Have been in and out of the hospital everyday since last friday. hopefully mayo can help me out.
The following user gives a hug of support to justwannahunt: abmarino1 (04-18-2012)
Sorry to hear you are going through some rough times there. I hope that Mayo can see you right away or very soon at least. They will figure it out. Just stay strong not only for yourself but also for your family. I will keep you in my prayers.
I did ok for a couple of days but the last night some of my symptoms started to come back. I am fighting them as much as I can but the stress of knowing that they can come backl at full force at any minute is just killing me and I have some type of flu or cold on top of that. This is not a fun way to live. I have an appointment with a neurologist on the 30th and he wants to do a lot of testing because he does not feel confident on my internal medicine doctor's abilities. I will keep you all posted.
I wish you all the best at the Mayo Clinic. Most certainly, you deserve it. I went to Arizona Mayo and although they were thorough, I am still sick. I've learned that doctors have different opinions so it's hard to know what to believe. I have an appt. with a new neurologist because I think I have a neuromuscular problem. It's fairly complicated because I have pulsating tinnitus as well and know somehow they are related. I have been diagnosed with cognitive behavior dysfunction which means I dont think right. My husband always tells me I put q before a. Maybe thats because i am left handed but I don't thinks thats it. But I think it has caused me some problems in communicating my symptoms because they are bizarre to me and hard to explain. I have gone to doctors who say tell me the worse symptom and that's it. One. I can't do it and don't think I should have to. Anyway, life goes on. I hope you get into the Mayo Clinic soon. Keep us posted.
Hi Mojo-
I read your post at the beginning of this thread and wow, I've had almost all the same symptoms you had. I also had an episode (June 2011) where my HR jumped up to 150 out of nowhere, followed by the 2 weeks of diarrhea, sweating, weightloss, tachycardia, etc, etc. My potassium went low when that happened as well. My potassium is apparently always low normal, or low. (I looked over copies of past bloodwork)
You are the only person I've seen on this site with the same symptoms as me so I felt like I had to respond. Only difference w/ me is I'm 27 and female. I also have been to a lot of doctors who I think, think I'm crazy too, and I also went to two psychologists (yes two lol, I even started to believe I was crazy) who both said my symptoms are definitely physical not mental. My primary also now (finally) believes that I'm actually sick as my blood tests for SED Rate, CRP, and ANA are elevated. I also just recently tested borderline for a Lupus antibody, so I have to go see a Rheumatologist again (the first one I saw said a whole lotta nothing).
I also am going to see an Endocrinologist as I have a pituitary deformity and I read the pituitary/adrenal malfunction can cause periodic low potassium episodes too. Anyway, please know you're not alone. Also please do not give up! You sound like you really enjoy your life and your kiddies, so even though I know it's exhausting don't let these doctors tell you you're okay if you know you're not. I was told (by a nurse of all people) that we have to be our own health advocate and this is so, so true. No one will look out for you better than you. Anyway, sorry for rambling, I just feel bad that someone else is suffering the same way I am. If I find out anything about what is wrong with me, would you like me to mention it in your thread here? Of course it's possible we don't have the same illness but since our symptoms are so similar I figure it can't hurt to have other ideas? Anyway, hang in there and I hope you get to the bottom of your illness too!
The Following User Says Thank You to sillygal For This Useful Post: Mojo37 (04-22-2012)
Thank you for your post! It sounds like you have some autoinmune problem right? A friend of mine had the same symptoms we have and all his test kept coming back normal. He was finally referred to Mayo and believe it or not he was diagnosed with rheumathoid arthritis. The doctors told him that autoinmune problems can cause all kinds of symptoms like the ones we have and not show up on most of the labs. The doctors need to know exactly what labs need to be performed or they are not going to find anything wrong and think you are crazy.
Please post what the doctors say to you. We all have the same problem I'm sure. Also, drink a bottle of powerade or something like that everyday. That's how I keep my potassium levels normal. Take care and thank you for reading my post. I hope you feel better soon.
How's everyone doing? I've had a hard week..temp up and down all week..I leave for Mayo on sunday, am I suppose to be happy I'm going to the doctor...Hopefully for the last time!!
I was just about to write to see how you were doing. I am having a rough time here. All my symptoms are back. I can't sleep at night because I keep getting this electric/ buzzing sensation, ear ringing and night sweats. Also my joint burning pain is just terrible and my stomach just gave up on me as well. I am living off of yougurt, unsalted crackers and kefir. I have two appointments Monday and Tuesday. I am going to talk to my doctors to see if they give me a referral to Mayo because I can't live like this anymore. I am running on fumes right now. Please let us know what they tell you at Mayo. I'll be praying for you and the doctors you are about to see. Take care.
I will let you know. I will be seeing an infectious disease doc to start early monday morning, have to fast for 6 hrs(like that isn't a daily occurance), so i'm guessing they have some tests in mind already. they have all my medical records for last 4 months. A heads up, for me to get in with infectious disease I needed a documented temp at a doctors office or hospital within the last week greater then 101.0, thats all that was required after my referal was sent in.
That is the only difference between our symptoms. I don't get a fever. My temperature drops below normal but I feel like I am on fire. Are you going to the Mayo in Rochester?
Yes, Rochester...My symptoms- Fever, nightsweats, body aches, Enlarged spleen, swollen lower eyelids, rash across my belt line and armpits. Liver has been enlarged on different ultrasounds. Normal spinal fluid except high level of protein. Very high white blood cells, and low platelets, on and off enlarge lymph nodes in my neck. My adrenal glands are functioning at 75%, doc said not a worry at this time. Positive ANA test, postive anaplasmosis-past infection. Positive Epstein Barr-past infection. Picc line failed due to high amount of inflammation in my body, body was fighting the line. I will let you know what they say, but as far as the referral went, it seemed like all they cared about was my temp?
So I went to a Rheumatologist last Friday. She told me that she would think I had Fibromyalgia from my symptoms alone. However, Fibromyalgia doesn't raise SED or CRP so that can't be it...She wants me to re-run all the autoimmune tests again, just to see if they come back positive. She said she's doing this because I had a slew of negative ANA tests the last few yrs and then only one positive one just recently. She's not "totally convinced" (her words) that something autoimmune is going on. I'm kinda annoyed that I'm just being sent to get more labs while nothing is done still. I've had a bunch of doctors all keep running the same labs and doing nothing and I'm not sure what their goal is but they're not helping me.
I was put on thyroid medication and adrenal support last year by an alternative doctor and had about 80% of my symptoms go away. I also have an enlarged thyroid, but normal labs. I've had these symptoms for 2 yrs now and it's getting to the point where it's unbearable and I literally feel like I'm dying half the time. I might just go back to the alternative doctor to get put back on the thyroid meds and call it a day. The Rheumatologist told me not to go back on it, even though it got rid of almost all my symptoms. I don't get it? She wants my to see an Opthmalogist for the dry eyes, a Gastro for my chronic constipation, a Cardiologist for the heart issues....etc, etc. I don't see the point if one pill literally gets rid of almost all those problems. Maybe I'm just some freak of nature with thyroid probs that don't show up in the bloodwork. Anyway, I don't know what's going to happen with me as far as diagnosis or treatment of any kind. But I figured I'd update to let you know what happened. Sorry this wasn't a more informative or helpful post.
Thanks for the update. I think you and I both need to see different doctors. What your doctor is telling you doesn't make any sense.
All my symptoms are getting worse. This last week was pure agony and right now as I am typing this is the worst I've been so far I believe. I will most likely end up in the ER tonight (hopefully not!). There is no doubt in my mind that I will not make it another two months if I don't get a diagnosis and treatment soon. I feel like I am trapped somewhere inbetween life and death. Tomorrow I have an appointment with a neurologist and with my internist on Tuesday. The internist is my primary care doctor and I am going to ask her for a referral to the Mayo clinic or at least to the local medical university. I cannot take this anymore physically or mentally. Take care and I hope you start feeling better soon. Keep us posted!
