Chronic Fever Club, Lyme & Some Disgusting Docs

Discussion in 'Fibromyalgia Main Forum' started by Elisa, Nov 14, 2007.

  1. Elisa

    Elisa Member

    Hi Chrissy12 and other members of The Fever Club:

    I thought I'd start this topic on chronic fevers.

    Mine started June 25, 2007 - I have had it nearly 5 mos - with one week with no fever (why I wish I knew!)

    My fever starts in the morning and goes until bed. It's range is 99.5 to 100.7 with spikes to 101. My normal temp used to be 98.2. I belive my temp is normal at night when I am sleeping. There are patterms to temps I am told.

    I have been to many specialists - with no luck. There still a chance this is from starting the methylation protocol B12 shots (2x/wk tiny amounts of folate). I just don;t know.

    It could be anything and it has made me weak and frustrated and makes the pain much worse.

    I wonder about dental connection and lyme and other things. Although I have no diagnosis of these.

    I have had CFIDS 11 yrs and had temperatures once in a while maybe once a week - no big deal gone a few hours later or the next day.

    Please share as much as you can about your fever experience and maybe just maybe we can help eachh other figure this out...

    Oh, and yes I have had reativated mono EBV twice since I originally got it in college. I don't know my titers - but may try to find out.

    Am very sick today so that's all for now!


    [This Message was Edited on 11/18/2007]
    [This Message was Edited on 11/18/2007]
  2. Doobie

    Doobie New Member

    I had a chronic fever almost a year. My normal temp is 97.? It would range 99-100 every day with the fever headache. Went to docs several time , maybe a cold, touch of the flu, virus, they always had an answer. I knew something was off. My EBV count was high too but didn't do that test until a year later. Since I rest more and address issues of CFS I don't get them as often. As soon as I get run down, hello fever and headach, glands join in too. I don't know why either, or how this all works. Wish I did.
    Hang in there. Feel better.
  3. pam_d

    pam_d New Member

    Please have your doc do blood work if it remains high much longer, or goes up even further.

    Elisa has had hers a while, and has had lots of tests. Sounds like Doobie has, too...

    But you mentioned yours is a new thing, after generally having lower than normal temps. It's really smart to have a CBC just to be on the safe side...just to rule anything serious out. I know I harp on that a lot here, but not everything can always be attributed to FM or CFS!

    Hope you ALL feel better soon!

  4. Elisa

    Elisa Member

    Thanks for your imput and wisdom, Pam. It's very true - getting bloodwork is essential to determine whether there is anything serious going on.

    I have had lots and so far there are no known reason for my fever.

    So thanks again Pam - I really value your suggestions and support...

  5. chrissy12

    chrissy12 New Member

    Elisa and others,
    This fever is difficult to live with. I feel it all of the time. It starts about an hour after I wake up, usually until the end of the day. I don't believe I have the fever during the night when I sleep. I saw my doctor and asked him if I could have lyme and he said no..I just want it to go away. It makes everything I do much more difficult. I do have high EBV titers, IGM and EA, VCA and EBNA IGG's. I do not know if these numbers have anything to do with the fever. I was a teacher for 27 years and it started Feb. of 2006. I walked out of my classroom on a Friday night and never returned. It started with pneumonia and pericarditis and then went into this chronic fever.
    My friends and family are a great support to me. I also have a strong faith and it has helped me deal with this. Some days are worse than others. There are times when I can just ignore it, but then it always return. I am still searching for answers and will keep you posted if I find anything that will help all of us.. .. Cindy
  6. maps

    maps New Member

    For a month it bounced around from 96.8 to 100.7 but I was having sweats day and night it was a nightmare.

    I have a CFS doc and when something like this happens she puts me back on antibiotics. Don't know what it was but four weeks of antibiotics and it was gone.

    Her philosophy is that I know my body the best and as no one has been able to find out what causes CFS she just treats the symptoms.

    I think I still have mycoplasma infections and every now and then they get worse.

    Hope you find the right thing for you.

  7. Elisa

    Elisa Member

    Bump for Fever Club
  8. munch1958

    munch1958 Member

    Why did your doc say you couldn't have Lyme? It's every where except Antartica. Roughly 200 doctors never diagnosed my Lyme disease!

    My temp is normally around 97.5. Shortly after a tick bite in 2001 my temp was 101-103. My fevers went away but I continued to have night sweats even though I'm on estrogen replacement therapy.

    Now I'm being treated for Lyme, babesiosis and possibly bartonella. More importantly, I'm getting better after 18 months of treatment.


    "Bartonella may not present in its usual form when additional infections, such as Lyme or Babesia are present. In addition, typical Bartonella lesions are not always seen in patients, therefore, a diagnosis of "fever of unknown origin" should alert a physician to consider Bartonella. It is estimated that approximately 2/3 of the patients with Bartonella have a fever. Involvement of practically every organ has been reported."
  9. Elisa

    Elisa Member

    Hi Munch!

    Thanks for your message!

    I've been on antibiotics for 2 yrs for mycoplasma pneumonia in the lungs.

    I had a Ingenex test a number of months ago. Do you think the negative was from the antibiotics?

    Where might I post the results (a new or old thread?) so those "in the know" about lyme could give me some feedback. The doc just said it was negative - but there are stars and IND several places.

    Grateful for your imput!

  10. chrissy12

    chrissy12 New Member

    I have been on doxyclycline for a year for mycoplasms. My whole infection started in the lungs,too. Okay, is the fever coming from this??? Interesting.
  11. munch1958

    munch1958 Member

    Post it here or on another thread.

    To get to the Immune Support Lyme board click on "Message Boards" by the tool bar. Then click on Lyme.

    There's a bunch of us that figured out our CFS & FM are REALLY Lyme triggered. Maybe yours is too!
  12. Elisa

    Elisa Member

    Thanks Munch and Chrissy/Cindy.

    Munch I will post my lyme test results today - I'll be interested to find out what they may mean...

    and Cindy - we need to explore these similarities further -we may be on to something...

    Cindy - have you suspected Lyme at any point? I have heard that myco and lyme are co-infections - but I'm not sure I'm correct - Munch might know if there is a connection.

    More later,

  13. 2_TiReD

    2_TiReD New Member

    I used to typically run a sub-normal temp of 97.9-98.2, but after I contracted meningitis in January, 2007, I have not had a day that my temp has been under 99.6 (or above 101). Every once in awhile I start feeling that I am getting a stiff neck and I get a headache and think "crap, here it comes again (meningitis)", but it goes away pretty quickly.

  14. chrissy12

    chrissy12 New Member


    Munch, can you tell us how they test for lyme? I asked my doctor and he said no, but I am going to Dr. Lerner in Dec. and I think he tests for lyme.

    Elisa, I am going to pursue this lyme connection.. Have you officially been diagnosed with it? Okay, maybe some clues to help us get to the bottom of this fever. And how do they treat lyme??

    P.S. My name is Cindy. My dog is Chrissy and she is 12 years old. fyi

  15. mollystwin

    mollystwin New Member

    Dr. Lerner does test for lyme. Most doctors consider the igenex western blot to be the best lyme test, but I heard a rumor that Dr. Lerner does not use this test. He does treat lyme disease though, I knew some who have been to him for lyme treatment.

    Tell him your concerns about lyme and hopefully he can help you. Another dr in Michigan uses the Igenex urine test for lyme. This dr was trained by Dr. Lerner to treat lyme after one of his relatives got sick from lyme disease.

    I don't think Lerner had lyme. I think he had a virus that was effecting his heart and he self treated with antivirals and recovered. Now he treats others with CFS and lyme.

    Lyme is treated with long term antibiotics. There are also some herbal protocols.

    good luck to you. I hope you find the answers that you need.

    [This Message was Edited on 11/16/2007]
  16. chrissy12

    chrissy12 New Member

    Thanks for the information. It was very helpful. I think all the information I can gather to help with this mystery is great and then we can help each other.
  17. Elisa

    Elisa Member

    My Dan doctor allowed me to get these tests from Igenex.

    Luyme Multiplex PCR
    Multiplex B Burgdorferi - Whole Blood
    Genomic - Negative
    Plasmid - Negative

    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 -

    IFA, B Burgdorferi G/M/A <1:40 (me)
    <1:40 = negative
    1:40 IND
    = or >1:80 positive

    Luyme Multiplex PCR
    Multiplex B Burgdorferi - Serum
    Genomic - Negative
    Plasmid - Negative

    That's all the tests I had...

    Hi Cindy - I have not been diagnosed officially with Lyme. My Dan doctor isn't a lyme literate - so he said all is negative.

    Hi Munch - love to hear your expert opinion!

    Anyone with Lyme experience feel free to comment - I know nothing - but want to learn...

    [This Message was Edited on 11/16/2007]
  18. munch1958

    munch1958 Member

    But I am no expert. Just a person who met up with a vile evil nasty tick on a camping trip. Never been the same since!

    If it wasn't for this board and twins Molly and Dar, I'd still be stabbing in the dark. They are the ones that let me know it was Lyme because they know their stuff.

    Calling Molly & Dar? What do you think????

    Experts think IND bands are weak positives. It's not a negative and not a positive either. Is the glass half full or half empty? There has to be something there otherwise they'd say negative.

    Band 30 is associated with Neuro symptoms. I'm positive for 30 too. Got lots of those kooky bizzare neuro troubles.

    Band 31 is Lyme specific or the outer surface protein A. So specific they made a vaccine out of it.

    Band 34 is Osp B [specific for Bb]

    Some say band 58 means nothing but why is it a band on the IGG? and included in CDC criteria?

    Band 41 means spirochetes. If you have this band you have either Lyme, syphilis or dental (gum) disease.

    Here's my doctor's expert opinion on the Igenex WB. He's the mega-expert!

    Testing for borreliosis

    Other doctors thoughts on the meaning of bands:

    Be sure to read the Revised Criteria Section!! "Lyme can be diagnosed if"...almost the same results as I had! Mine are in my profile.

    Dr Holtorf creator of FFC protocol:

    Diagnosis and Treatment of Lyme Disease
    (A Culmination of the Literature) Kent Holtorf, M.D.
    1. Over 1500 gene sequences
    2. At least 132 functioning genes (in contrast, T. pallidum has 22 functioning genes)
    3. 21 plasmids (three times more than any known bacteria)

    1. Immune suppression
    2. Phase & antigenic variation
    3. Physical seclusion
    4. Secreted factors

    1. Early Lyme disease (“Stage I”)
    ... A. At or before the onset of symptoms
    ... B. Can be cured if treated properly
    2. Disseminated Lyme (“Stage II”)
    ... A. Multiple major body systems affected
    ... B. More difficult to treat
    3. Chronic Lyme Disease (“Stage III”)
    ... A. Ill for one or more years
    ... B. Serologic tests less reliable (seronegative)
    ... C. Treatment must be more aggressive and of longer duration

    1. Disease changes character
    2. Involves immune suppression
    3. Less likely to be sero-positive for Lyme
    4. Development of alternate forms of Borrelia
    5. More likely to be co-infected
    6. Immune suppression and evasion
    7. More difficult to treat
    8. Protective niches

    1. Spirochete form has a cell wall
    2. L-form (spiroplast) has no cell wall
    3. Cystic form

    Borrelia burgdorferi develops granules & cysts with environmental stress
    Antimicrobial Agents & Chemotherapy, 1995;39(5):1127-33.

    IMMUNE SUPPRESSION BY Borrelia burgdorferi
    1. Bb demonstrated to invade, inhibit and kill cells of the immune system
    2. The longer the infection is present, the greater the effect
    3. The more spirochetes that are present, the greater the effect

    1. Within cells
    2. Within ligaments and tendons
    3. Central nervous system
    4. Eye


    1. It is a clinical diagnosis supported by appropriate testing (likelihood of a false negative must be understood)

    2. Look for multi-system involvement
    3. 17% recall a bite; 36% recall a rash
    4. 55% with chronic Lyme are sero-negative
    5. PCRs- 30 % sensitivity at best- requires multiple samples, multiple sources

    1. Low counts seen in active Lyme
    2. Reflects degree of infection
    3. Can be used as a screening test
    4. Can be used to track treatment response
    5. Can predict relapse

    1. Over 75% of patients with chronic Lyme are negative by ELISA

    1. Reflects antibody response to specific Bb antigens
    2. Different sensitivities and specificities of the bands
    3. Some bands are potentially seen in different bacteria- “nonspecific bands”
    4. Some bands are specific to spirochetes
    5. Some bands are specific to Bb
    6. Specific: 18, 23-25, 28, 31, 34, 37, 39, 58, 83 & 93
    7. Spirochetes in general: 41 (flagellum)
    8. First immune response if present is usually 41 and 23 KD bands
    9. Response to the 31 KD proteins is not usually seen for a year after initial infection

    1. IGG WB 5 of the 10 bands (18,23,28,30,39,41,45,58,66)
    2. Criteria based on early Lyme
    3. IGENEX adds 3 specific bands (31,83 and 34) and 3 non-specific bands (22,37,73)

    1. IGM WB 2 of the 3 bands 23, 39, 41
    2. IGENEX adds 3 specific bands (31,34 and 83) and 3 non-specific bands (22,37,73)


    1. IGG WB: 2 specific band criteria has demonstrated improved sensitivity and maintained specificity

    2. Can diagnosis Lyme if any one band (IgG or IgM) of 18, 23, 28, 39 or 58 kDa or if any 2 or more of the following bands are present; 30, 45,41 and 93

    3. If negative or require further confirmation, can obtain IGENEX WB (adds specific bands of 31, 34 an 83, which are typically seen in chronic disease)

    4. Positive if any one band of 18, 23, 28,31,34, 39, 58 or 83

    5. If positive for Borrelia on any test, consider testing for neurotoxins

    6. Consider testing for co-infections (discussed below)

    7. Check for coagulation defect (See Hypercoaguable State in CFS and FM)

    CherylSue -- another recently diagnosed Lyme who thought she had CFS but now knows it's Lyme posted this link today. Good info! Note that Lyme infections are 5 times more common than AIDS!


    ILADS Lyme Disease Treatment Guidelines Summary

    We are proud to offer the most up-to-date version of the Diagnostic Hints and Treatment Guidelines for Lyme and other Tick-Borne Illnesses, written by the world-renowned, Lyme-literate physician Dr. Joseph J. Burrascano Jr.

    Basic Information about Lyme disease:

    Lyme disease is prevalent across the United States. Ticks do not know geographic boundaries. A patient's county of residence does not accurately reflect their total Lyme disease risk, since people travel, pets travel, and ticks travel. This creates a dynamic situation with many opportunities for exposure for each individual.

    Lyme disease is a clinical diagnosis. Spirochetal infection of multiple organ systems causes a wide range of symptoms. Familiarity with its varied presentations is key to recognizing disseminated Lyme disease. Case reports in the medical literature document its protean manifestations.

    Fewer than half of patients with Lyme disease recall a tick bite. In some studies this number is as low as 15% in culture-proven Lyme borrelial infection.

    Fewer than half of patients with Lyme disease recall any rash. Although the bull's eye presentation is considered classic, it is not the most common dermatologic manifestation of early-localized Lyme infection. Atypical forms of this rash are seen far more commonly. It is important to know that the Erythema Migrans rash is pathognomonic of Lyme disease and requires no further verification prior to starting 6 weeks of antibiotic therapy. Shorter treatment courses have resulted in upwards of a 40% relapse rate.

    There has never in the history of this illness been one study that proves even in the simplest way that 30 days of antibiotic treatment cures Lyme disease. However, there is a plethora of documentation in the US and European medical literature demonstrating histologically and in culture that short courses of antibiotic treatment fail to eradicate the Lyme spirochete.

    An uncomplicated case of chronic Lyme disease requires an average of 6-12 months of high-dose antibiotic therapy. The return of symptoms and evidence of the continued presence of Borrelia burgdorferi indicates the need for further treatment. The very real consequences of untreated chronic, persistent Lyme infection far outweigh the potential consequences of long-term antibiotic therapy.

    Many patients with Lyme disease require treatment for 1-4 years, or until the patient is symptom free. Relapses occur and maintenance antibiotics may be required. There are no tests available to assure us whether the organism is eradicated or the patient is cured.

    There are 5 subspecies of Borrelia burgdorferi, over 100 strains in the US, and 300 strains worldwide. This diversity is thought to contribute to Borrelia burgdorferi's antigenic variability and its various antibiotic resistances.

    Lyme disease is the latest great imitator and should be considered in the differential diagnosis of MS, ALS, seizure and other neurological conditions, as well as arthritis, CFS, gulf war syndrome, ADHD, hypochondriasis, fibromyalgia, somatization disorder and patients with various difficult-to-diagnose multi-system syndromes.

    Lyme is the number one tick-borne illness in the US. The CDC reports there are 24,000 new cases of Lyme disease in the US, but the CDC says that figure could be under reported by tenfold.

    ILADS believes newly diagnosed cases of Lyme may occur at a rate five times higher than the number of new AIDS cases. Chronic Lyme is reported in up to half of patients treated for Lyme.

    Symptomatic presentations of Lyme disease include:
    Low grade fevers, "hot flashes" or chills
    Night sweats
    Sore throat
    Swollen glands
    Stiff neck
    Migrating arthralgias, stiffness and frank arthritis
    Chest pain and palpitations
    Abdominal pain, nausea
    Sleep disturbance
    Poor concentration and memory loss
    Irritability and mood swings
    Back pain
    Blurred vision and eye pain
    Jaw pain
    Testicular/pelvic pain
    Cranial nerve disturbance (facial numbness, pain, tingling, palsy or optic neuritis)

    "Late and Chronic Lyme Disease: Symptom Overlap with Chronic Fatigue Syndrome & Fibromyalgia"
  19. munch1958

    munch1958 Member

    The thread is called:

    A Video that EVERYONE with CFIDS FM & LYME should watch

    Here are some others:

  20. mollystwin

    mollystwin New Member

    There are doctors who would treat you with lyme based on these results. I would make sure a LLMD interprets these. Did you post them on the lyme board here too?

    Molly what do you think?