Fever Club - My Update

Discussion in 'Fibromyalgia Main Forum' started by Elisa, Aug 17, 2009.

  1. Elisa

    Elisa Member

    Hi all in the Fever Club!

    I just wanted to update that I am still battling this fever - now 2 years and 2 mos...

    It's a constant concern for me - as I have had this illness, CFS/ME, for 13/14 yrs.

    My fever no longer ever goes away - not even on full antiiotics for an infection (that I recently had on my face - argh).

    What in the world could be causing it? any ideas tips, remedies, advice - wow I'd take anything at this point. It has really been my "tipping point" in this illness.

    Anyway, I just know it is a huge clue - just can't figure it out!

    Has anyone else had a fever this long? Need reassurance, I guess! Afterall that's why I started the Fever Club - to trade ideas, support and find a solution!

    God Bless Everyone,


    [This Message was Edited on 08/17/2009]
    [This Message was Edited on 08/17/2009]
    [This Message was Edited on 08/17/2009]
  2. jasminetee

    jasminetee Member

    Geez Elisabeth that is such a long time to have a fever. I get them often especially during Winter but they come and go with me.

    Have you tried laying down all the time? Maybe that's what your body wants you to do right now. It certainly is putting up a big fight, sure wish we knew what it was fighting against for sure.

    Have you tried changing your diet? Are you taking any medications? Are you pushing yourself too hard?; which for us can mean pushing ourselves at all.
  3. Elisa

    Elisa Member

    So sweet of you Tee!!!!! It has been a long road with this fever...really bummed about it too. So it is especially nice to hear from you!

    I am in bed sooo much - and I do have to push myself to do anything.

    I've been on atibiotics for years now. I was tapering off azithromycin - I am down to 4 a month (of the 250mgs) - but then I got a huge infection on my face/lip - out of no where. So, of course, I had to begin doxy twice a day - 100 mg/2x - and it is not smooth sailing - headaches, worse insomnia - yuck. Don't know if I can ride this doxycycline monohydrate out!

    I developed more severe swallowing problems after aroot canal in March '09 and have had a limited diet - but I am gluten-free (Celiac) and eat mainly organic.

    I feel really stressed and have HUGE survival fears daily. Constant worrying - I know its bad - but it's real stuff.

    I just want to feel better - you know? Just a little would be such a breakthrough for me...

    God Bless you Tee,

    [This Message was Edited on 08/17/2009]
  4. Elisa

    Elisa Member

  5. Elisa

    Elisa Member

    You are so thoughtful...Yes I remember your earlier post on Stills - and I did look into it - but I guess my fever is not high enough to qualify. I read all the specifics on the Foundation wesite - I guess it's a little like RA. So back to the drawing board...but I am so grateful for your kindness to help,

  6. jasminetee

    jasminetee Member

    So sorry to hear you got a bad infection on your face too. I hope that clears up quickly.

    I wonder if the ABX are causing your fevers? Is that a possibility?

  7. Elisa

    Elisa Member

    I have been off antibiotics for long periods - with no change in the fever. One doctor mentioned a fever as a reaction to medications or antibiotics - so for some, I guess, this can happen.

    What's odd is that even on antibiotics the fever doesn't move?

    Thanks again Tee!

  8. Elisa

    Elisa Member

    Hi Glen,

    I totally agree - its the elephant in the room - LYME. Is it or isn't it - I wish I had a doctor that had an understanding of Lyme or testing. But no luck here.

    I have even considered trying to hire and out-of-state Lyme doctor to review my tests. My Igenex test really needs an expert's opinion. As many ME/CFSers, I have all the symptoms of Lyme - so I just wonder how does one know for sure?

    Such a dilemma!

    Thanks for your support!

    [This Message was Edited on 08/19/2009]
  9. Nanie46

    Nanie46 Moderator


    All symptoms point to lyme and associated coinfections such as bartonella, babesia, ehrlichia.

    Most people do not have just lyme....they have other tick borne illnesses also.

    It sounds like you herx on doxy, which is a good indication of lyme.

    Please read this paper by a lyme expert...


    Pay attention to the symptom list p 9-11 and the coinfection info that talks about symptoms on p 22-27.

    It is unfortunate that many people never get proper treatment because they think lyme has been ruled out by a negative test.

    Many people with lyme have had only officially CDC negative tests. It is only a reporting criteria, NOT a diagnostic criteria.

    Plus, testing methods are not great. Lyme is NEVER ruled out by just a negative test.

    I urge you to find a Lyme literate MD who follows ILADS guidelines by going to lymenet.org....click on flash discussion....sign up for free like you did here.....click on the Seeking a Doctor board......create a post asking for a LLMD in your state.

    You will receive a private message.

    Also, the Medical Questions board there is great and very active.

    If you have not already posted your Igenex results there, you could do that and ask any questions you want. There are lots of intelligent people there with lots of experience.

    My gut tells me you have lyme and associated coinfections and you will not get better until you address it aggressively with a good LLMD.

    You know the saying.....If it looks like a duck and quacks like a duck, it's probably a duck...

    I will be away from the board for a few days.

    Please try lymenet.org's boards.
    [This Message was Edited on 08/20/2009]
  10. Slayadragon

    Slayadragon New Member

    Hi Elisabeth,

    I continue to be concerned about your house.

    As Dr. Shoemaker has suggested, a house that has had a terrible black mold problem really cannot be remediated to the point where someone who has been severely affected by toxic mold can live in it without being sick.

    The mold spores are not the problem. The problem is the poison that the mold makes.

    The poison is released by the mold in order to coat all the surfaces in the house. It thus prevents competitive molds from growing.

    The poison coating the surfaces of the house is enough to make people who are sensitive to mold sick regardless of whether there is even one spore left in the house.

    In addition, black mold (stachybotrys) will easily grow back in a house that's been affected by it. The mold grows in walls, meaning that it is almost impossible to find.

    I would guess that it's extremely unlikely that there has never been any stachy that's grown back in the house since you got it remediated.

    A dehumidifier does not help once any stachy has grown. It's not the live mold that's the problem. A dead stachy colony releases more spores than a live one.

    HEPA filters do not remove mycotoxins. The particles are too small. Even if you had 500 filters in the house, that would not address the problem at all.

    When I was living in my moldy house, my temperature regulation got way out of whack. Sometimes my temperature was low, sometimes high. That's a symptom of severe mold poisoning.

    I suggest that you do a trial of moving out of the house for a while. Don't take any of your stuff (not even one belonging) with you. Buy a few new things.

    If your house is as bad as I think it is, probably anyplace you go would be better. Try to choose a place where nobody in it has a mystery disease though (e.g. CFS, ADHD, autism, SIDS death, chronic depression, chronic liver disease, etc.).

    Also, I'm of the vague impression that you live in Texas. Texas is a very bad state with regard to outdoor mold. I'm suspicious with regards to whether anyone with severe mold illness can ever do well there. Getting out of the state (at least for the trial) would be better.

    If you do decide to do the trial, please let me know. I'll give you further suggestions.

    Dr. Guyer is a fantastic doctor, but insofar as people are sensitive to toxic mold and chronically exposed to it, there's going to be little that he can do.

    I'm of the belief that almost all people with CFS have Lyme disease. It seems downstream from a number of CFS problems, including immune system defects and the relatively "anaerobic" environment caused by VEGF problems. These are both related to mold.

    People who are severely ill from CFS usually will be unable to effectively treat Lyme disease. The levels of antibiotics needed are impossible to tolerate.

    Insofar as mold exposures are less high, treating Lyme disease will be more feasible. For those who are very sick, it's almost irrelevant whether Lyme is present. If it can't be treated, there's no point in thinking about it.

    I know that I'm sounding sort of militant about this, but I think that considering your history, this is something that you need to consider. Remaining sick for the rest of your life (especially as sick as you are) because your house is problematic is, in my opinion, a terrible thing. Obviously we all would like to live in a nice comfortable house, but if it's poisoning you then any other alternative would be preferable.

    I'm very worried about you.

    Love, Lisa

  11. chrissy12

    chrissy12 New Member

    Hi Elisa,

    I am really sorry to hear you still have your fever. I know exactly how you are feeling and it is awful!!!

    Mine went away when I was put on antibiotic IV's for mycoplasma.. Have you ever been tested for that?? I did the IV's last Sept/Oct. I am going up and down, but am having some up times. I know I have improved some, but still climbing the road out.

    I wish you well and sending you many good thoughts and blessings...
  12. munch1958

    munch1958 Member

    Hi Elisa:

    Have you ever heard of a Lyme associated bacteria called Babesia? According to Dr Steven Harrod Buhner, from the book "Healing Lyme" the symptoms are:

    a vague sense of imbalance, headache, fatigue, anorexia, muscle and joint pain, feelings of chest compression, shortness of breath, chills/fever, nausea, malaise and drenching sweats.

    Some people don't have all of these symptoms. Many people report feeling "air hunger" like they can't get enough air inside their lungs especially in the middle of the night.

    Have you ever been tested for Babesiosis? Keep in mind that there are over 30 strains fo Babesia in the world. The testing is only for one or two strains like WA-1 or Washington-1.
    Missouri has it's own strain, MO-1.

    Very little research has been done on Babesia so it's possible to have a strain that they haven't identified yet or one they don't have a test for yet.

    I had drenching sweats year round only after taking a shower/bath and going in a pool or hot tub. I absolutely hated summer weather since I was a child because all I do is sweat profusely. Some people report having to change their pillow case a few times during the night.

    My symptoms all went away after being treated with 4 Malarone (an anti-malarial med) and 2 Zithromax per day for 4 months. I'm now enjoying being outside in the summer time for the first time in about 40 years.

    I didn't have a fever because my body temperature is on the low side due to hypothyroidism. During my last tick bite, my fever was hovering between 101-104 degrees. I was in a hospital where they ignored the EM rash and the fever. They said it was a spider bite and ignored the fever.

    About 25 doctors looked at me and none of them ever got the right diagnosis because "we don't have Lyme in Illinois!" Lyme is everywhere! Not every tick is infected with Borrelia and other disease causing agents but that's is why your pet's vet tells us to get a flea and tick collar or some sort of monthly treatment for our pets.

    I looked at your Igenex WB results from another post and copyed them below:

    Lyme IgG Western Blot

    18 kDA -- 22 kDA -- **23-25 kDa -- 28 kDa -- 30 kDa -- **31 kDa -- **34 kDa IND **39 kDa -- **41 kDa IND 45 kDa -- 58 kDa + 66 kDa - 73 kDa - **83-93 kDa -

    Lyme IgM Western Blot

    18 kDA -- 22 kDA -- **23-25 kDa -- 28 kDa -- 30 kDa + **31 kDa IND **34 kDa -- **39 kDa -- **41 kDa IND 45 kDa -- 58 kDa + 66 kDa - 73 kDa - **83-93 kDa -

    For what my opinion is worth, there is some IgM activity but almost no IgG activity except for a positive at Band 58 which is a Borrelia heat shock protein. An IgM response but no IgG indicates chronic Lyme. With another illness, a result like this looks like a false negative but with Lyme it means something else.

    You have an Ind at Band 41 on both the IgM and the IgG. This part of the test represents the tail of the spirochete. From your results, I would suspect some sort of spirochetal illness either Lyme, syphilis or dental disease.



    Many Lyme doctors would like to see Igenex combine Band 30 and 31 as they are two parts of the same band. If they had done this you would be IgM positive like me. My results are in my profile along with Dr Kent Holtorf's intrepretation of the WB test. If you look at this you will see that you are IgM positive for Lyme Borreliosis because of the positive at Bands 30 & 58.

    If you've been sick for a long time your immune system is so overwhelmed that it can't make antibodies to this bacteria anymore. You could try repeating the test after a trial of antibiotics. Sometimes stirring the pot will cause a negative blot to turn positive.

    Before the Western blot criteria was changed at the Dearborn Conference in 1994, serial western blots to look for changing antibodies was the definitive way to test for Lyme. We need to go back to this because the Lyme vaccine was withdrawn from the market.


    Have you had a CD-57 test? This is a Labcorp test which indicates Lyme disease. Google the Stricker panel + Lyme disease for more info on this test.

  13. Slayadragon

    Slayadragon New Member

    Linda, so nice to "run into" you!

    How are you doing?

    I suggested to Elisabeth maybe a year ago that babesia might be an issue for her, and Rich van K seconded the idea. It sounds like her symptoms are a match.

    My understanding of babesia (and tell me if I'm wrong) is that an even vaguely functional immune system should be able to eliminate it without any difficulty. On the other hand, if the immune system is totally shot, getting rid of it can be just about impossible.

    And of course, babesia has extremely debilitating symptoms. Of all the bugs that CFS sufferers tend to have, this one seems like the worst.

    (Along with maybe toxoplasmosis, another parasite. That one may be less common though.)

    My hope with addressing the mold first is that the immune system will come online enough to be able to effectively address the babesia and whatever other pathogens are present.

    I'm pretty sure that I didn't have babesia, which was the one saving grace of my illness. If I'd stayed as sick as I was for much longer, I'd likely have picked it up somehow though.

    But I did have this experience treating an infection (I'm assuming Lyme, though could be cpn) with doxy.

    When I was living in my moldy house, I was unable to take even 15 mg (compounded) of doxy for one day. It made me psychotic (really) and sapped every bit of my remaining strength. I was unable to move for a week after I tried it.

    A couple of months after moving out of the moldy house and leaving behind my stuff, I was able to tolerate 50 mg for a week or so with moderate die-off. I then decided to focus on detox and go back to the doxy later.

    After i visited Erik and learned how to get _really_ away from mold poison, I picked up a new Lyme infection from sleeping in a tent. This scared me to death, but I was able to immediately take 300 mg of doxy with only mild die-off symptoms. I took it for a couple of months and then stopped.

    Several months after that, I decided to try it again. I got no die-off at all. I suppose it could be that the Lyme is resistant to the doxy, but I doubt it. I think it's gone. Insofar as I'm avoiding mold, the only symptoms that I have left are mild specific cognitive ones, which seem more likely to be viral and/or mercury related. Or maybe just the brain taking time to repair itself.

    I had the same experience with an antiviral (Famvir). I had a terrible time taking even 250 mg when i was living in the moldy house. It totally sapped all my strength. Recently I decided to try it again. I've been doing perfectly fine on 1000 mg. (As an experiment, I decided to try 2000 mg----which is WAY at the top allowable dose---to see what would happen. I did get a pretty big die-off with that, so it seems that viruses still are a bit of an issue. So I'm going to continue on the Famvir for a while and then maybe eventually try Valcyte.....maybe with the mold avoidance, it won't be a problem either.)

    I now think that everyone with CFS has mold and viruses as core issues, and that most have Lyme. (And too many have babesia.) If I'm right, mold really should be addressed first, because it's POSSIBLE to address. Getting away from mold is expensive and a pain, but it's doable. Killing bugs when people are really debilitated may not be doable, and it rarely is doable without great effort. And the fact that the bugs can come back so easily is really disturbing!

    Giving the immune system every bit of a fighting chance by eliminating stressors like the mold seems to be a reasonable thing to do, therefore. And when folks are aware that mold is a factor, that's especially true.

    Elisabeth, thanks so much for your message on Twitter! I was pretty forceful in my e-mail above, to the point that some people might have gotten annoyed at me. I'm glad that you didn't.

    Love, Lisa
  14. Brownie08

    Brownie08 New Member

    Hi Elisabeth -
    It has been a while since I actually posted...I have been more of an observer...still trying desperatelyt o find the cause of my 99.4 fever and headache every single day!!!
    I feel for you - and know exactly how you what you are going through. I have been to so many Drs - i am starting to think that I am going crazy....and to top it off - 99.4 is not considered a fever...so Drs dont take it seriously....!

    I am about to go in for a Brain MRI tomorrow - which hopefully will hold the answers that I have been looking for...My Neurologist is stumped...Rhumy Dr is not convinced that it is not Fibro/CF, I dont have LYme...or any other infectious disease, the full Body CT shows nothing - my Hormones are fine...by blood levels are good....What in the world is causing this!!!

    Keep up the posts if you find an answers....and I will do the same...

    FYI - I started a RAW diet about three weeks ago and has made a major shift in my energy and overall well being~ not sure if you have gone down that path...worth a try.

    All my best -

  15. jasminetee

    jasminetee Member

    I think CFS can cause a constant low-grade fever. I get them all the time but for me they come and go, however, they constantly come and go, for decades now.
  16. Nanie46

    Nanie46 Moderator


    Your chance for recovery from CFS rests with finding the CAUSE of your fever/CFS.

    Many people accept the CFS/FMS diagnosis as final and accept that it has "no known cause".

    Everything has a cause, including CFS or FMS.

    Doctors give you that diagnosis because your symptoms fit exactly....and so did mine.....but they do not try to find out what caused it!!!

    Instead they label you with an illness from which you will not recover since they are only treating your symptoms, not the initial cause.

    Everyone with CFS or FMS should strongly consider tick-borne illnesses like Borrelia burgdorferi, babesia, bartonella, ehrlichia (HGE and HME), ect.

    It is unfortunate that 99% of Dr's wrongly rule out Borrelia burgdorferi (lyme) with a lab test because they do not understand this complex illness.

    Because of this, thousands of patients continue to suffer for the rest of their lives.

    Anyone with an intermittent or constant low grade fever should consider bartonella and babesia, which usually go along with lyme.

    Testing is not foolproof by any means. LLMD's say "Treat the person, not the lab test."

  17. Elisa

    Elisa Member

    Hi All!

    Thank you so much for your posts - I am reading and re-reading them - to find my new direction for addressing this fever.

    I am overwhelmed - this thread contains really valuable information!

    Clearly, Mold and Lyme are the contenders or BOTH.

    The fact that fever represents constant "immune activation" - something is causing the body to go to the trouble and complexity of raising the temperature. Internal or External environment irritants, infections, toxins, pathogen - something.

    There must be a way to track it from fever to pathogen - without so much guesswork? I just wish I knew how.

    If only I could find a fever expert?


    [This Message was Edited on 08/24/2009]
    [This Message was Edited on 08/24/2009]