Fever Club Now 2 year Anniversary

Discussion in 'Fibromyalgia Main Forum' started by Elisa, Jun 23, 2008.

  1. Elisa

    Elisa Member

    *** I have changed the title of this thread - but I started the fever club a couple years ago to explore possible causes of a daily fever (mine) or periodic fever**** I'm going to bump it for Brownie and all members!

    Hi All,

    I am approaching my one year anniversary of getting my fever. I had a small break for a few days when I started juicing. Of course it is back.....

    I'd love to hear updates from everyone regarding their current or past fevers - how long it lasted, what caused it, how they got it to go away - any info really!

    I have been a big mess, as in addition to the fever, I developed a racing feeling/irritable with elevated heart rate - just aweful and scary.

    The elevated heart rate (100-152 bpm) last all day and at night my heart goes down too low (<60 bpm)

    I'm seeing my second endocrinologist - will see him for my 2nd appt this Friday.

    I am so worn down I cry mostly and fret - just can't think straight anymore - as the last year has been BRUTAL.

    I do pray for help and thank the Lord for all of you.

    God Bless,

    [This Message was Edited on 06/23/2008]
    [This Message was Edited on 06/11/2009]
  2. Slayadragon

    Slayadragon New Member

    Hi Elisabeth,

    You've had such misfortune and been to so many doctors during your illness that I'm not sure what you have and haven't done.

    I'm wondering how carefully you've looked into babesia or other "co-infection" type parasites.

    Those are serious enough that they can cause any number of horrible symptoms, and unfortunately even the most specialized CFS doctors seem to overlook them.

    You've not seen a really good Lyme Literate MD, have you?

    Some of those are not even terribly expensive.

    I am super crazy about Dr. Guyer and increasingly enthusiastic about my local CFS doctor, but I wouldn't leave it to them to treat a major parasite of any type (the "co-infections," toxoplasmosis, malaria, whatever). I'd get myself to the best LLMD I could find as quickly as I could if I had even a sliver of a suspicion that that was my problem.

    I do worry about you.

    Best, Lisa
  3. Elisa

    Elisa Member

    Hi Kelley,

    You always offer such kind and caring support - thank you so much - it does really make a difference to hear a voice that knows and understands...

    I used to be a patient of Dr Cheney's before his heart transplant. He was wonderful and allowed me to allow a Dr to be in control - what a relief that was!

    Yes I had massive toxic mold (stachy, aspergillus, penicillun etc) in the house (an in my blood) I moved into after leaving the condo that had carbon monoxide issues. So before the mold was the carbon monoxide poisening - high and low levels for a long while -hence a brain hypoxic injury...

    I do have a bed that props up (a Sleep Number I love)- so I may try that to see if that helps - I know it helps with the breathing.

    This temp has made me crazy - I even bought a doctors office thermometer - A Welch-Allen - just because the digital and ear and temporal-thermo-scanners were so variable. I have spent a small fortune on thermometers.

    The heart rate problem started just before I got my super low TSH results back - so hyperthyroid or "something-thyroid" is still a possibility. The variable for me are the doctors - I live in an area were the Cleveland Clinic dominates and I think they send out a bulletin that says all CFS/FM patients are nuts...or something. Because the sheer number of docs that are now blowing off even abnormal blood work blows ME away.

    I am going to re-review the Cheney videos and the DVD I have from Dr jefferey Bland's functional medicine - they are so good. I know he speaks of treatment including Hawthorn, and small injections of magnesium and a few other items. That was a great suggestion!

    Thank you agian for your support - I am grateful!

    God Bless,


    Thanks for the positive idea of "a breathrough coming"...I will think of that all day and it will give me hope!!!!

    [This Message was Edited on 06/24/2008]
  4. xchocoholic

    xchocoholic New Member

    Sorry to hear that you're feeling puny.

    I was just wondering if you've looked at the Paleo diet yet ? A lot of us who have celiac can't handle other foods like corn, soy, dairy, eggs, etc or any chemicals.

    Evidently our digestive tracts are in such bad shape that we over react to a host of foods. And minute amounts of gluten. Is your home gluten free ?

    The Paleo diet eliminates all foods that are common problems. It's just meats, veggies and fruits. It will regulate your blood sugar too.

    Also are you taking digestive enzymes and probiotics ?

    I meant to look at celiac dot com or one of the other celiac sites to see how common low grade fevers were but I forgot ... I wouldn't be surprised if it was a celiac symptom though. We know it messes with a lot of organs ...

    You know I felt anxious for a long time when I first went on this diet. I just assumed it was gluten and dairy withdrawals. We know they can act as opiods in autistic kids ...

    I'd say it took about 2 years for me to finally feel great most of the time. Well while at rest anyways. I'm still struggling with OI/PEM.

    But, I'd still feel crappy today if I were eating dairy, soy, corn or any chemicals. I got to add eggs back into my diet a few months ago, but I can't tolerate the others just yet. I can have minute amounts of the others if they are cooked in foods now though.

    So, maybe you just need to give it time or look at other foods that you're eating ...

    BTW, supplements and meds make me feel toxic too. I can drink herbal teas though.

    And are you taking DPP-IV yet ? It helps me when I've accidently eaten gluten.

    That's all I can think of ...

    HTH ... Marcia

    [This Message was Edited on 06/24/2008]
  5. chrissy12

    chrissy12 New Member

    Hi Elisa,

    I am really sorry to hear your fever is still there with no answers. I do know how you are feeling and it does get rough.

    I wish I had some new insights into the cause of your fever, but I don't, not even for myself.

    I, too, have a racing heart and Dr. Lerner did diagnose me with tachycardia. He has me take 1/2 more of my beta blocker. I use tenormin. He believes the cause of the tachycardia is from the viruses and mycoplasma pneumoniae.
    I see him this week and I am not sure what he is going to do because my mycoplasma is still very high.

    He believes when we get the viruses and mycoplasma down, my heart issues will resolve. I am hoping the fever will resolve, too.

    Today it was near 100 and that is when I really feel it. If it stays down to 99.5, I seem to cope better.

    I wish I could offer more help. Please know we are with you in spirit and I am sorry you have to deal with this...

    Take care, Cindy
  6. Slayadragon

    Slayadragon New Member

    Here is a pretty mainstream article.

    The symptoms it lists are high fever, chills, diaphoresis (excessive sweating), weakness, anorexia and headache.

    The article states that later in the course of the illness, the patient may develop jaundice.

    Congestive heart failure, renal failure and acute respiratory distress syndrome are the most common complications, it says.


    When to Suspect and How to Monitor Babesiosis

    Massachusetts General Hospital, Boston, Massachusetts

    In the past decade, cases of babesiosis in humans have been reported with increasing frequency, especially in the northeastern United States. Babesia microti (in the United States) and bovine strains (in Europe) cause most infections in humans. Most cases are tick-borne, although cases of transfusion-associated and transplacental/perinatal transmission have also been reported. Factors associated with more severe disease include advanced age, previous splenectomy and immunodeficient states. Symptoms include high fever, chills, diaphoresis, weakness, anorexia and headache. Later in the course of the illness, the patient may develop jaundice. Congestive heart failure, renal failure and acute respiratory distress syndrome are the most common complications. Therapy using the combination of quinine sulfate and clindamycin was the most commonly used treatment; however, atovaquone suspension plus azithromycin was recently reported an equally effective and less toxic therapy. Exchange transfusion, together with antibabesial chemotherapy, may be necessary in critically ill patients. (Am Fam Physician 2001;63:1969-74,1976.)

  7. Elisa

    Elisa Member

    Hi Lisa!!!!

    You are such a sweet friend - I really adore your insights...and your kindness!

    You know I was about to say I had the Babesia test and I went to look at the infectious disease results and they are NOT there and one or two tests were pending...from 9/20/07 - I never was given the final report. I am on it and I am going to ask about the Babesia too.

    See you got the ball rolling here for me - thanks so much - I wouldn't have looked at it again had I not wanted to verify the test results.

    It is so great to hear your enthiusiam for Dr Guyer - that is so rare and so great...keep me hopeful there will be others dedicated to helping patients with this DD.

    God Bless You Lisa,


  8. Elisa

    Elisa Member

    Hi Blue-Belle!

    Having a fever so long is exhausting on top of this DD's fatigue...

    Regarding the tachycardia - I used to get it periodically but now it is most of the day and stops at night and goes the other way - super slow...

    I have seen a heart doctor at the Cleveland Clinic for years - she is their expert on these things and she offers me beta blockers (can't take them now because if asthma-like breathing issues), compression knee highs (the height of couture fashion) and the advice to drink tons of water with 3 grams of salt throughout the day.

    My day long tachycardia started in April '08 or so...

    I think I feel beyond frustrated and deeply hopeless - I have tried so hard for so long and I can't get any doc to fight along with me. I need some medical person's help and it really impacts one when no will help.

    God Bless,


  9. Slayadragon

    Slayadragon New Member

    I'm not much of a lyme expert (at least not yet), but aren't there a lot of other parasites that are classified as co-infections?

    I'd want to look into all of them if I were really perplexed by what was going on with me.
  10. Forebearance

    Forebearance Member

    Hi Elisabeth,

    I wish I had some good suggestions for you. All I can say is that my thoughts and prayers are with you. It's so unfair that you have to go through what you are going through.

  11. Elisa

    Elisa Member

    Hi caldonia,

    Thanks you so much for the referral - that was so kind of you. You have been so great to help me so often and I am appreciative. You have great ideas.

    With you success with cat's claw, GFSE and caprylic acid - do you think your fever was fungal? I have read at least two of these are excellent antfungals - the GFSE and caprylic.

    Which one did you use first and for how long? Do you mix them? Or just rotate there use - say quarterly?

    I may try one or more - love to hear!

    Thanks so so much for your support!

    God Bless,


  12. Elisa

    Elisa Member

    Hi Kelly,

    You always have such great info - you must be a great researcher! Thanks so much!

    As I was telling Lisa - I wasn't tested for Babesia and need to have it done. I wonder if I can get it done myself though Igenex? Anyone know?

    Anyway thanks for your support!

    God Bless,

  13. Elisa

    Elisa Member

    Hi Forebearance!

    Your words are so kind and touching - thank you, my friend. It means a lot to me. It is always great to hear from you.

    I hope you are doing well in you new place...

    I hope we both can make great progress in the next few months. I will pray (for you) too and maybe just maybe our prayers will be answered.

    God Bless You Foreberance!


    [This Message was Edited on 06/27/2008]
  14. Elisa

    Elisa Member

    Hi Brownie - here's one thread - but I think there are several. Maybe people can make suggestions or ideas on how to deal with a fever.

    Mine is 2 yrs now - without breaks of even a few days now (I used to have it stop for as long as 10 days) - it has really hurt my stamina and I sleep alot more now.

    My fever stats: minimum 99.5 - 100.5 - highest 101. Nighttime is lower.

    Here's hoping for help,

  15. Elisa

    Elisa Member

  16. pam_d

    pam_d New Member

    I'm hoping you remember me, I get here once in a blue moon, but I do like to check on my old friends from time to time. I'm so sorry you are still dealing with the chronic fever. To me, yours is more than "low-grade" and I'm sure it's frustrating that you can't find some cause, especially after all this time. I'm sure it's very discouraging, and also physically exhausting. Have they ever turned up anything in the way of test results?

    Anyway, I hope for some resolution to this soon. I'm coming up on my one year anniversary (July 12) of my bone marrow transplant----still hanging in there!

    Take care, old friend, and I hope you and others in the fever club can get some answers, and most importantly, feel better!

    Take care,
  17. Elisa

    Elisa Member

    Hi Pam,

    What a great surprise...of course I remember...

    Your message made my day, when I saw it a big smile came onto my face.

    I am so happy you are doing well - an answer to all our prayers.

    Thank you so much for your support too. It means so much to hear from my friends - and you are a friend I have thought alot about!

    When you do visit here - please let me know - I don't want to miss you...

    So so happy for your great news!!!!

    God Bless,

    [This Message was Edited on 06/13/2009]
  18. Elisa

    Elisa Member

    Thank you so much for your kindness...I am definately going to look into this. All of us with fevers need to.

    It's just so thoughtful of you to post this info. Thank you so much.

    God Bless,

  19. mlbbarry

    mlbbarry New Member

    I am new to this board so hope you don't mind another idea. I was diagnosed with Idiopathic Granulomatous Hepatitis about six months ago. Symptoms include fever, fatigue, malaise, and just plain feeling like crap all the time. Your illness is so different, as is my rare disorder, I was wondering if they have done any other testing to make sure the fever is from mold or maybe something else is happening. Once your immune system is messed with you can get a whole slew of new issues. Have they done a liver biopsy to rule out any liver disorders which cause fevers all the time. The only nasty drugs I know to kick fevers are Prednisone which I won't take any more, methotrexate used for a number of immune disorders, and I am currently taking an anti malaria drug call Paquinol which does something to the immune system, not sure what guess I am getting desperate. I am so very sorry to hear of your suffering, it is miserable and can be difficult for all around you, just keep trying and praying as God has not forgotten you, and now I won't either. Monica
  20. Forebearance

    Forebearance Member

    I'm so sorry to hear that you STILL have your fever, Elizabeth! I can't believe how long it's been going on!

    Have you ever tried colloidal silver? I've been taking it for a few months, in case I have a slight Lyme infection. It kills everything, though. If you were having trouble with any kind of pathogen, it would probably cause a response.

    I'm sorry I can't remember all the things you have tried. I'm sure it's a LOT of things. I wish you better health.


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