I've been visiting doctors for over 7 months trying to determine the cause of my consistent low-grade fevers. I've been to a G.P., OBGYN, Infectious Disease doctor, rheumatologist, neural ophthalmologist, and now I'm going to an allergy doctor to see if allergies are the culprit.
I've had an oral temp of 99.4 in the morning to 100.5 in the evening since Nov 06. If I take a shower or bath it goes up to 101. I've had ear drainage, horrible acne on my back and shoulders (I've always had clear skin), scratchy throat, fatigue, occasional numb spots on my legs, night sweats, and muscle twitching.
I've taken over 10 weeks of antibiotics, as the doctors thought I had sinusitis. I've had an MRI which showed an enlarged pituitary gland. However, they've tested me to see if the pituitary was causing issues, and they determined it isn't. My endocrinologist found I had severely low Vitamin D levels. I scored a 6, so I've been put on prescription vitamin D and my levels are getting back to normal.
The doctors have ruled out autoimmune, Lupus, RA, mono, bacterial issues. All blood work was normal. Everyone has basically told me there isn't anything else they can do. I'm still able to work and exercise, but I would love to have this problem. Any help would be much appreciated.
Did your physician check your vitamin D 1,25 hydroxy ? If so, what was that result ? You may want to do some research on vitamin D dysregulation in autoimmune diseases, CFS, sarcoidosis and other conditions.
I'm not sure what type of vitamin D is being measured. I honestly didn't know there was more than one type of vitamin D to test for. What is the difference?
Also, the hormone levels have already been checked by my obgyn. All fine. My infectious disease doctor said I had CFS, which is basically the same thing as fybromyalgia, just with less joint pain. Honestly, I know he just said it because he'd ruled out everything else and wanted to give me a diagnosis. There were no tests he performed to determine this. So, since CFS doesn't have any cure and no one really knows how to test for it, I want to keep pushing to determine the problem if there was one to be found.
I also have CFS and I'm on a research study called the Marshall Protocol and that is why I mentioned the vitamin D labs. To be a candidate for the MP, you must have vitamin D dysregulation, which is an indicator of Th1 inflammation and cell wall deficiency.
There are some treatments for CFS --- the research protocol I'm on (you can do a search and find their website) and also Dr. Paul Cheney has a treatment for CFS online. It uses mostly vitamins and minerals --- which I've learned is very important in treating this illness.
Wow. I read some info on the Marshall Protocol. Very interesting stuff. Are you seeing your symptoms go away through the treatment? Did you have prolonged fever with your CFS? I noticed that I had horrible fatigue until they found my low D levels. Once I got the levels back up, I had a lot more energy and was able to go back to work. (I drive to accounts all over my state, so I can't be to tired on the road.)
I will check back with my endocrinologist to see if they have the 1,25-dihydroxyvitamin-D levels or if they just checked the 25-hydroxyvitamin-D, which is my suspicion. However, I know I qualify there as 6 is way below 20 ng/ml. My levels are back up, but only through meds.
I've had so many blood tests, I don't know if they checked my Th1 levels. I'll look into this too.
The crazy thing is my mom had sarcoidosis for many years before she developed breast cancer that ended her life at 43. I had no idea that CFS and saroidosis were connected.
So, how to you become a part of the research? Do you have your doctor enlist in the study, as I know Dr. Marshall doesn't treat people directly as he's not an MD. Or, are there a list of physicians already participating?
I think I remember my Endo saying that one of his patients' on the protocol had a fever of 102 for a year straight. Apparently, she's now 95% better.
The protocol just makes your symptoms worse.... some days can be hard... I'm not going to lie to you. However, you can manage the herx reaction by taking extra Benicar. It takes some time to get used to and the Moderator's on the site can assist you. When you first start, it takes some time to get used to the Benicar --- I mean, we are already dizzy ! LOL ! The Moderators will also be able to tell you whether or not you have Th1 inflammation and would be a good candidate for the MP. You can just post your results on the prelim board and they will tell you what it means.
I would definitely consider discussing this option with your doctor and print out info from the site, including some of the success stories. I know CFS is a hard diagnosis and especially when it comes to treatment and many physicians' don't keep up on the latest treatment options.
Great info. Thanks! I will give some of these articles to my endo. We'll see if he's open to it. At least I can get the testing and go from there.
I'm honestly a bit scared to start treatment if it causes lots of bad symptoms. I'm able to function now and do my job. I don't want to go on disability and right now I'm the only support for my family as my husband is starting med school.
However, if it is the problem, I do want to get better. I'm tired of this persistent fever.
Again, thanks for the insight. Have you heard of anyone else on the site who had similar symptoms to me? I read about fevers after people started treatment, but nothing of symptoms before phase 1.
I feel that I am making progress on the MP. I can eat gluten now and a year ago, I would get sick after eating anything with wheat in it. The thing is, it is a long treatment (1-3 years), but you can kind of tell the treatment is working because it makes your symptoms even worse (what they call, "herxing"). This is a good thing because it is a die-off reaction --- the treatment is killing the pathogens in your body that are making you so ill. Dr. Marshall published a pathogenesis for sarcoidosis and concluded that a range of other inflammatory diseases, result from the same bacterial pathogenesis as sarcoidosis. I know that other CFS researchers' have also discovered bacteria in CFS and fibro patients'. From what my Endocrinologist told me, not every CFS patient has vitamin D dysregulation, but I did and it sounds like you could as well.
I'm not surprised you feel better after taking vitamin D. Vtamin D isn't a true vitamin --- it is a steriod hormone. I'm not sure if you notice whether or not your symptoms are worse in sunlight or if you have photophobia. People on the MP have to avoid taking vitamin D and have light restrictions. The medications used in the MP are not research medications. Your physician can prescribe the medications for you, if he/she is willing to or you can find a MP physician in your area by posting on the General Discussion Board and posting on the thread that says, "Request for Doctor's List".
One thing I thought I would also mention is getting a DEXA scan. If your vitamin D 1,25 hydroxy is 45 or above, you could have osteopenia. There is a member who is only 24 years old on the website who has it. I did as well after I read their info. All I know is that they seem to understand what is happening and the information they have given me, IMO, has been accurate. In addition, they have their success stories from members' on their website. Their research protocol is fairly new. I suggest if you are thinking about it to see a physician who knows about the protocol and do as much research as you can. It is a commitment and you can decide whether or not it is right for you... at least it is one more option that we have now and didn't have only a couple of years ago !
Have you heard of any censorship of the MP website? I always google everything, and I found some past moderators who said they were banned from the forum for silly reasons or trying to help patients. I also read from some people who were banned for posting anything contradictory to the MP. For example, asking questions about research showing vitamin D is good, etc. I read that if people don't ask things favoring the MP, or having to quit the MP due to kindey issues, they were shut out.
I'm just trying to get all the facts. I only get one body. =) I realize there are alway frustated people out there, but there is a consistent group out there all saying the MP site is very censored.
I appreciate your honesty. I realize great ideas can sometimes come from those who don't have the best people skills. I'm definately considering this, but the pain to get better may have to be put off for a bit. With my husband in medical school, I am the only source of major income and I can't get so sick I'm put on disability. I have to be able to continue working a very demanding job.
I just came back from my allergy doctor who wants to do a cat scan to make sure I don't have a prolonged sinus infection. He has reason to believe this may be happening after checking my nose. He also is doing another mono test. My antibodies are very high for mono and this is the second doctor to tell me they think I have chronic mono.
So, I'll be doing a bunch more tests. What fun! I'm meeting with my endo next month to talk about the MP and blood test results.
Again, thanks for your thoughts. I have to admit that Marshall's ideas are the best explanation for why I have a low vitamin D count in Florida. =)
I'll be completely honest with you... in my opinion, there are some problems with censorship on the board and some of the Moderator's don't have the best customer service skills (to say the least). I've had issues with them myself and I hear that I'm not the only one. I only post now when I absolutely have to. However, I still believe in the protocol and I have actually spoken with a former Moderator and she believes in the protocol. Her daughter had lyme disease and conventional treatment failed her. The ex-moderator told me that she's doing great now.
Since you are working and can't afford to get any worse, you may want to try one of the many treatments for CFS --- all posted online. The treatments are mostly supplements you can take.... possibly, some medications. But, of course, only if your physician thinks that CFS could be the culprit. As you can probably tell from the MP website, many of the people there with vitamin D dysregulation have autoimmune and/or various syndromes.
Some of the country's best CFS physicians are Dr. Jacob Teitelbaum, Dr. David Bell and Dr. Paul Cheney. I believe all three of them have their treatments posted online.
Best of luck to you !! Let me know what happens, if you can.
O.k. New news. I went to my allergist and talked about my OBGYN's thoughts on chronic EBV. They took my blood again and the results are that the EBV levels are going down from three months ago. I still have high antibody levels, but my liver levels had gone back to normal ranges. So, my allergist (he is also an internist) feels I just have ongoing mono and that my body is fighting it off and will recover with time. They will take my blood in a month. If it's still not going down fast enough, he will put me on antivirals. So, good news! I am getting better. =) It's just a slow process.
My fever began by a pretty intense headache on my right side of my head and general ill feelings. But, I was having headaches for months before the fever. They originally thought I had a sinus infection. I thought it was the flu, but it never went away. Yes, it does go up when I get stressed or when I exercise. The crazy thing is, before I began the fevers, I would get so cold that only a hot bath could warm me up. My hands and feet were always cold too. Now, I'm always hot. =)
Have you had an EBV test? They test your antibodies to see how high they are. This tells them the level of infection. Have you had your vitamin D levels checked like we've been talking about in previous posts?
Also, do the research on this site: www.marshallprotocol.com. It's some interesting reading to say the least. I don't know if I'm going this way, but if other things don't work, I may try this.
And, yes, don't give up. You'll eventually get to the bottom of this. Just keep going through doctors until you find one who believes you. Keep researching on your own as well. I had to go through six doctors and have found two that actually believe me. Now, they're working with me to get to the bottom of this.
I have had low grade fever for 10 years after "coming down with" CFS. I have tried everything. EVERYTHING. I am starting Tietelbaum CFS treatment except for the antibiotic portion-which of course opens a whole other door. He seems to think a very long course of antibiotics such as doxycycline will help. Was your fever preceeded by a bad flu? Does your fever raise after stress? I am not giving up no matter what until I get to the bottom of this!
I have a two year-old son, he has pretty much always been healthy with the exception of ear infections whenever he would have a cold. In February he got a severe case of pnamonia, then a couple of weeks later he got it again. we had tubes put in his ears...Since then he seems well, except for haveing low grade fevers. Usually 99.5 or below, occasionally spikeing up to 101-102. And on one occasion even 104.7. It's been over 3 months now of constant fevers.
He has been tested for food allergies which all came back negative, and also CF which was negative. The doctor acts like I'm crazy, but I just don't see why his body would run fevers if it wasn't fighting something. I have no clue what is wrong with him. I am so worried about him, any ideas?
well i don't know what to tell you, but im in the same boat. i have had a fever for over two months now. i don't know why it won't go away. i have taken 3 rounds of antibiotics and it still is there. It only goes up to 100.8 but it makes me feel terrible. i hurt all over either with aches, numb burning pains, or shooting pains. im nauseous a lot, have headaches, dizzy, problems with my memory, fatigued, weight gain, depression, anxiety, etc. i never do anything anymore except lay in bed, moan, or cry. The only thing that was off on my blood work was my liver enzymes and that might have been cause i was taking so much medicine for my pain. i want to get to the bottom of it but money and no insurance is a problem. i had to quit my job because i couldn't physcially do my job, i just started a job last week and i struggle each day to get through it. im only 19 years old and feel like im 80 and on my death bed 95% of the time. the only thing i can think of it being is CFS but i don't know how to know for sure. My mom is the same way as me but some of her symptoms have gotten worse than mine, except she doesn't have a fever, but she did for 2 years straight before. i just can't feel this way everyday and live a productive life. i hope you find out what is wrong with you. im going to try to with me. i will try to keep checking this website to see if you have came up with anything.
For 2 years now I have ran a low grade fever (99-100) also and have a low blood iron count (as well as other things). I am never suitable to give blood!
I have discovered both are due to gluten. The gluten causes inflammation and my increased temperature. This inflammation causes malabsorption of nutrients. It is amazing what gluten can do!
Actually, the bible even says, "What is food to one man, is poison to another." I wish you well.
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