Health

I was just diagnosed with Lyme disease, but I heard the blood test can give false-positives—is that true?

- asks Mary from Pittston, Pennsylvania

July 30, 2007
Western black-legged ticks on a finger. Left to right: nymph, adult male, and adult female. [CREDIT: CALIFORNIA DEPT. OF HEALTH SERVICES]
Western black-legged ticks on a finger. Left to right: nymph, adult male, and adult female. [CREDIT: CALIFORNIA DEPT. OF HEALTH SERVICES]

Ah, the tricky situation that is the Lyme disease test: just last year, the serological lab work used for diagnosing this illness were described by physicians as “confusing and controversial”. Yet, they are still being used to diagnose 20,000 new cases of Lyme every year, though according to a 2005 statement by a Centers for Disease Control epidemiologist, these tests are right more than 90 percent of the time. This is a high rate of correctness, but it still leaves some patients wondering if they truly are infected.

You may have a hunch you have fallen prey to the disease based on symptoms that developed after a smarmy tick was caught hanging off your physique. The most common vector-borne illness in the United States, Lyme is caused by the spirochetal bacterium Borrelia burgdorferi; it is most often transmitted by minute ticks—usually deer or western black-legged species. After being bitten by an infected bug, usually in the months of June, July and August reports the CDC, your body moves through symptom cycles, which progressively worsen if the illness goes untreated.

The disease usually begins with flu-like symptoms, such as headaches and swollen lymph nodes, as well as muscle and joint pain. Those symptoms that develop in the months or years that follow are far more serious: numb extremities, neurological malfunctions, arthritis and heart arrhythmias. The sooner you can nip Lyme disease in the bud with a round of antibiotics, the faster you’ll recover from its side effects. But to get to the necessary medication, you must first be diagnosed.

To do this, doctors draw blood, which is usually sent to the lab for testing by (take a deep breath) Enzyme-Linked Immnosorbent Assay, or ELISA for short. This test does not scan the blood for the actual bacterium, rather it searches for antibodies that your immune system raises against B. burgdorferi.

Antibodies are proteins produced to fight off infection, so B. burgdorferi antibodies would indicate that the immune system has fought off (or is still fighting) the sordid spirochete. (That being said, there is one test—polymerase chain reaction, or PCR—that can be used to identify the bacterium’s presence in your body by its DNA, but it is normally only used as a follow-up to other blood work, like ELISA).

Antibody-based blood tests can also roughly determine the severity of a case of Lyme, judging by how many antibodies are clogging your bloodstream. They do this by studying how many antibodies are present in a diluted solution of the blood, called a titer. A patient with titer that has a larger bottom number, such as 1:154, has more antibodies in their blood than one with, say, 1:11. Depending on how high your antibody titer is, labs may also do a Western blot analysis, used to weed out the all-too-common false-positive Lyme test.

There are a myriad of reasons for why tests come back with false results. For example, if you’ve recently been infected, anytime in the previous eight weeks, antibodies may not yet be present in your blood, therefore making it appear that you don’t have Lyme. Also, even after many weeks of fighting off the bacteria, there may be too few antibodies in your blood for the ELISA test to register. And lastly, a recent round of antibiotics can suppress the level of anti-B. burgdorferi proteins the bloodstream, also making it appear you aren’t infected.

False-positives, on the other hand, most likely result when your body is fighting off another infection, because the Lyme blood tests also detect the presence of antibodies to other bacteria or viruses. Illnesses such as syphilis and HIV, or even mononucleosis, is cause to question a positive test result.

For those of us who have had an intimate relationship with Lyme, antibodies to the disease remain in your bloodstream long after the bacterium has been vanquished, which makes future blood tests false-positive and disease resulting from a subsequent rendezvous with a tick hard to diagnose (FYI: Lyme can strike you as many times as the good Lord sees fit and symptoms can extend after successful treatment, for reasons unknown).

Because of the problems surrounding the blood tests, doctors are hesitant to give them willy-nilly; they fear giving more will increase the numbers of false-positive diagnoses. When considering whether or not to stick a needle in your arm, they consider many factors, such as symptoms, history of being exposed to ticks and presence of other illnesses. And as a patient, you have a right to be your own advocate: if you do your research, coming to understand the disease, and determine that you could have been exposed to Lyme, you have every right to suggest that he or she check to see if a nasty little bug called B. burgdorferi is the cause of your malaise.

** Editor’s note: The end of the first paragraph originally read “Yet, they are still being used to diagnose new cases of Lyme every year, though according to a 2005 statement by a Centers for Disease Control epidemiologist, these tests are right 90 percent of the time. This is a high rate of correctness, but it still leaves 10 percent of patients, about 2,000 based on the CDC’s numbers, wondering if we truly are infected.” The CDC statement actually said “more than 90 percent” and so the above lines were changed for accuracy.

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Discussion

71 Comments

This is false.

There are far more false negatives, because even according to Allen Steere, only the people with Lyme arthritis will test positive, and that is a small percentage of the population.

According to Allen Steere and the CT Ag Station, perform only a Western Blot (NEVER and ELISA), and if you have band 41 and no periodontal disease, syphilis, or obvious arthritis, you have Lyme Disease.

This is why there is a controversy, and why the CT Attorney General is suing the Infectious Diseases Society of America- RESEARCH FRAUD.

Kathleen M. Dickson
ActionLyme.org
Former Analytical Chemist for Pfizer

The following two reports by Allen Steere and Yale state that if a person has band 41 (or flagellin), Lyme symptoms, and they do not have severe periodontal disease or syphilis, they have Lyme borreliosis:
http://www.pubmedcentral.nih.gov/picrender.fcgi?artid=423723&blobtype=pdf
1) Allen Steere in 1986, when he developed the first CDC Method to diagnose Lyme, recommended: ” Perform serial Western Blots to look for changing and expanding IgM and IgG antibodies,” since Lyme is a borrelisis, a relapsing fever, and the changing antibodies is a reflection of the varying antigens- and that, THIS CHANGING phenomenon means “the spirochete remains alive throughout the illness.”
In that full text report, Steere said one can distinguish between Lyme and syphilis, when one only sees band 41 (anti-flagellar antibody) in a person complaining of Chronic Fatigue Syndrome or Fibromyalgia.

2) Yale and CT Agricultural experiment Station- the full pdf:
http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pubmed&pubmedid=8788993
Use of recombinant antigens of Borrelia burgdorferi in serologic tests for diagnosis of lyme borreliosis.
Magnarelli LA, Fikrig E, Padula SJ, Anderson JF, Flavell RA.
Department of Entomology, Connecticut Agricultural Experiment Station, New Haven 06504, USA.
Recombinant antigens of outer surface proteins (Osps) OspA, OspB, OspC, OspE, and OspF of Borrelia burgdorferi sensu stricto and of p41-G, an antigenic region of flagellin of this spirochete, were tested with human sera in class-specific and polyvalent enzyme-linked immunosorbent assays (ELISAs). In analyses for immunoglobulin M (IgM) antibodies, 18 (85.7%) of 21 serum samples from persons who had been diagnosed as having Lyme borreliosis on the basis of the presence of erythema migrans reacted positively in ELISAs with one or more Osp antigens or the p41-G antigen. Eleven serum samples contained antibodies to OspC antigen, and of these, six also reacted to the p41-G antigen and to one or more of the other recombinant antigens. The remaining five serum samples reacted solely to OspC (n = 4) or to OspC plus OspA and OspE without reactivity to p41-G (n = 1). In analyses for IgG antibodies, seropositivity was comparable to that of IgM analyses and was marked by predominant reactivity to p41-G, OspC, and OspF. Similarly, all 21 serum samples were positive in polyvalent and class-specific ELISAs with whole-cell B. burgdorferi. Minor cross-reactivity was noted when sera from persons who had syphilis, periodontitis or other oral infections, or rheumatoid arthritis were tested with OspC, OspE, OspF, and p41-G. With relatively high degrees of specificity, ELISAs with recombinant antigens, particularly OspC and p41-G, can help to confirm B. burgdorferi infections.
PMID: 8788993 [PubMed – indexed for MEDLINE]

Kris Newby says:

The accuracy of the CDC-recommended Lyme testing protocol is abysmal compared to that of other infectious diseases.

In a 2003 study by Rendi Bacon of the CDC [1] et. al, they report these sensitivities for the two-tiered ELISA-Western Blot Lyme tests:

Week 1 after symptoms: 16% (misses 84 out of 100 positive cases)
Week 2-4 after symptoms: 48% (misses 52 out of 100 positive cases)
Accuracy for all samples (n=280): 68% (You might as well flip a coin.)

Given that most people who are sick with Lyme visit their doctor 2-4 weeks after symptoms begin, and the new IDSA guidelines **strongly** recommend a positive test or a rash to receive treatment, you can see why many people continue to be misdiagnosed.

There is a new C-6 test on the horizon, but it’s only slightly better than the current 2-tiered testing procedure, with a sensitivity of 66%- 73%. A good screening test really needs to be about 95% sensitive. Why is the CDC endorsing a mediocre test? Could it be that Barbara Johnson of the CDC has a European patent on the C-6, and Rendi Bacon works for her?

All this data can be found in this CDC-blessed slideshow:
“An Update on Lyme Disease Diagnostics – Mario Philipp, PhD”
http://www.secebt.org/conferences/detail.cfm?conference_id=12

[1] Bacon RM et al. J Infect Dis 2003 Apr 15; 187(8): 1187-99

Dr. Jones explains Lyme disease testing:

http://www.wildernetwork.org/Understanding_Western_Blot.html

UNDERSTANDING LYME WESTERN BLOT

There are nine known Borrelia burgdorferi genus specie specific KDA Western Blot antibodies (bands): 18 23 30 31 34 37 39 83 and 93.

Only one of these Borrelia burgdorferi genus specie specific bands is needed to confirm that there is serological evidence of exposure to the Borrelia burgdorferi spirochete and can confirm a clinical diagnosis of Lyme disease.

CDC Western Blot IgM surveillance criteria includes only two Borrelia burgdorferi genus specie specific antibodies for IgM 23 and 39 and excludes the other seven Borrelia burgdorferi genus specie specific antibodies.

CDC Western Blot IgG surveillance criteria includes 18 23 30 37 39 and 93 and excludes bands 31 34 and 83.

It does not make sense to exclude any Borrelia burgdorferi genus specie specific antibodies in a Lyme Western Blot IgG and to include only two of these antibodies in IgM because all the antibodies in IgG were once IgM.

IgM converts to IgG in about two months unless there is a persisting infection driving a persisting IgM reaction. This is the case with any infection including the Borrelia burgdorferi induced Lyme disease.

CDC wrongfully includes five non-specific cross-reacting antibodies in its Western Blot surveillance criteria: 28 41 45 58 and 66. This leads to the possibility of false positive Lyme Western Blots. There can be no false positives if only Borrelia burgdorferi genus specie specific antibodies are considered. One can have a CDC surveillance positive IgG Lyme Western Blot with the five non-specific antibodies without having any Borrelia burgdorferi genus specie specific antibodies.

This does not make sense.

CDC recommends that the Lyme Western Blot be performed only if there is a positive or equivocal Lyme ELISA. In my practice of over 7000 children with Lyme disease, 30% with a CDC positive Lyme Western Blot have negative ELISA’s. The Lyme ELISA is a poor screening test. An adequate screening test should have false positives not false negatives.

Jennifer says:

Wow.. This is supposed to be a science web site?? Is this the “new” science? You know, the science that is completely WRONG??

Where do you people get your totally incorrect info on Lyme Disease? It’s hard to get a positive test, easy to catch and often very difficult to treat.

SIGH.

Miguel Perez-Lizano says:

Molly Webster, I think you meant well but your information is shallow, incomplete and inaccurate. Please take note of the prior comments which are informed and accurate.

One topic that hasn’t been covered is the statement that 20,000 cases of Lyme disease are reported by the CDC and that only 2000 cases might be missed because the “Lyme test” is 90% accurate is way off the mark. The previous posters have explained the worthlessness of this test.

The CDC has over 20,000 cases of reported Lyme disease under exceedingly strict criteria. Using a multiplier for underreporting of 10X reported cases (based on surveys taken in Northeast states where Lyme disease is recognized), there are an estimated well over 200,000 cases in these Northeast states alone. The actual nationwide figure could easily be double that since most physicians outside of the Northeast remain incredibly ignorant about Lyme disease and, as a result, the disease is rarely diagnosed and patients needlessly suffer with misdiagnoses of CFS, MS, ALS, fibromyalgia, lupus, early Alzheimer’s and other conditions of unknown cause and unknown cure.

If uninformed physicians and the public read articles such as this, they will continue to be badly misinformed about Lyme disease.

eec says:

welll i am glad to see some of that old
streere info on band 41–i just had my first WB done by Quest labs–41 was my only positive band
i have a stack of neg titer test from quest and labcorp over the past 3 years
in march 2004 and may 2005 i had the bowen
Qribb done both times it was a 1;128 the
highest level given on there scale
since jan 2007 this test is under license
but shelved?????
it was tested published and then duplicated
by DRjo anne whittiker and DR linda matton it was deemed to be 99.9% accurate
i have since been using the Quest CD-57
test wich has values different than
labcorp s Stricker CD-57 panel
the best i can tell is that i have 4%
where normal is 35%
which indcates i have an active infection
my health waxes and wanes with the phases of the moond
did about 2+ years of various meds
stopped meds about 9 mnths ago but need to start again
any way back to testing–bowen reformed as
central florida research and has a new test
under development (as well as there other
bowen tests-BUT NO Q-ribb)
so i am going to try that this week
it is a simple pos or neg thru antigen
NOT antibodies
the kits are free and they now take insurance or offer 50 bucks off for out of pocket patients
now i just need to get back on the meds
contact me at eec4ajs@webtv.net
will be happy share what i think i know

Harmie says:

After hours of searching for IgM P41 band information this last comment was exactly like my own. Jan 08 found abnormal P41 but has been dismissed by doctors as being an indicator of Lyme (so why did it show???). After several attempts to find out the truth, only one NP recognized that it ‘might’ be an indicator of Lyme, even though I had all the symptoms, went out on a limb and put me on Doxy for one month. No room for questions, comments or amendments. It’s as if she has disappeared into the woodwork on this one, and has basically put me on rest for 3 weeks but reported to my disability insurance company ‘that I am capable of working.’ So that puts me into a bad situation healthwise and financially. Since I am now out of funds, will have to wait to get money to see a LLMD that took weeks to find, and pray that whatever they do will benefit me. With all the information regarding antibiotics vs. herbal, it’s no wonder people now travel to Mexico for treatment. And that new movie coming out with Alec Baldwin about a town infected with Lyme..it seems like a joke to me, mocking what we are really experiencing. I used to like wathcing ‘The Twilight Zone’ as a kid, but never thought I’d live it. Take care, and best to everyone fighting this insidious bacteria.

isk8 says:

Hi,

I am from central Floridian and have had three wb tests done. The first was positive with 23 and 41 bands. The next wb became (CDC) negative b/c band 23 did not show up but 41 did again. The PCR was also negative. The third WB just came back again negative with only band 41 showing positive. I am so confused. My Dr. recom the CD 57 test but Lab corp seems to think they do not have the one he wants. It was written as “CD 57 absolute and total”. Can band 41 be positive if you have another infection OTHER than Lyme or is it specific to Lyme? I also have a positive for M Pneumonia so I wondered if that infection is causing the band 41 to show up?

Thanks,

Harmie says:

isk8: Sounds strangely like my experience, and it’s puzzling that doctors don’t have an answer about the P41 band. From my limited research I know that it tends to show up in other diseases such as arthritis, and can be present in Lyme. In your case the positive pneumonia could be the clue. It’s an inflammation band in any case and your body is trying to fight off the bacteria. Please post your latest test results. I recently went to a LLMD after weeks and weeks of terrible experiences and was ordered the CD57, and had Lyme tests sent to IGENEX. Awaiting results next week. At this point, and hearing all the speculation what’s wrong, it wouldn’t surprise me if the $250 I spent showed negative for all! The tests are so skewed and primitive that it’s not a good situation and many are years in the mix of trial and error, many on their own research to figure out what’s wrong and why the symptoms are not like anything else ever experienced. Best to you and at least get the antibiotics for the pneumonia. Rest!

jennifer says:

Hi! I am not sure what I have, but I have the following results:
UBO’s-MRI(unidentified bright objects)Mayo Clinic
hhv6 titer 1:16
Igm band 41 present-abnormal (labcorp)
M pnemonia – 191 – abnormal

My Dr. was treating me for 5 mths for the hhv6 with valcyte with little improvement. I started doxycycline 200mg 19 days ago and after being VERY sick for 18 mths I think this is the cure.

The symptoms the doxy has alleviated or reduced are: dizziness, environmental sensitivity, brain fog, BACK pain, dry mouth/eyes, out of breath, muscle weakness, swollen throat, terrible pressure/inflammation in ears and head, stiff neck.

I am stil dealing with pressure in my head, pain in my face bones, pain in joints, some dizziness, and heat intolerance… but the good news is I think the longer I am on doxy, the better things will be and I will soon be back to normal.

Has anyone had a similar experience? Good luck. the worst part of having an undiagnosed illness is the lack of empathy/understanding from friends. Cancer sufferers are understood, we are not.

Good luck and maybe doxycycline will help you. I feel like it has begun to turn off my body’s inflammatory process, so it is such a blessing.

Anthony Murawski says:

The College of American Pathologists found that ELISA tests do not have adequate sensitivity to be used for screening purposes.
* SOURCE: Bakken et al., Interlaboratory Comparison of Test Results for Detection of Lyme Disease by 516 Participants in the Wisconsin State Laboratory of Hygiene/College of American Pathologists Proficiency Testing Program. J. Clin. Microbiol., Vol. 35, No. 3, Mar. 1997, p. 537–543.

Forty-five labs correctly identified positive
samples using the ELISA only 55% of the time.
* SOURCE: Bakken et al., Performance of 45 laboratories participating in a proficiency
testing program for Lyme disease serology. JAMA
1992;268:891-5

Fifty two percent of patients with chronic Lyme disease are negative by ELISA but positive by western blot.
*SOURCE: Donta, Late and chronic Lyme disease. Med. Clin. N. Amer., 86, 341–349 (2002).

Between 20-30% of patients with confirmed Lyme disease are seronegative.
* SOURCES: Aguero-Rosenfeld, M.E., et al., Serodiagnosis in early Lyme disease. J Clin Microbiol, 1993. 31(12): p. 3090-5; Aguero-Rosenfeld, M.E., et al., Evolution of the serologic response to Borrelia burgdorferi in treated patients with culture-confirmed erythema migrans. J Clin Microbiol, 1996. 34(1): p. 1-9;
Donta, S.T., Tetracycline therapy for chronic Lyme disease. Clin Infect Dis, 1997. 25 Suppl 1: p. S52-6.

The presence of band 41 alone is an insufficient basis to conclude that exposure to Borrelia burgdorferi (B.b.) has occured. The 41 kDa antigen is common for most flagella-bearing organisms, although band 41 in combination with one of highly B.b.-specific bands indicates a very high likelihood of B.b. exposure (see below).

True, in his 1986 paper, Steere did state as follows:

“Although antibodies reactive against this antigen
[41-kD] may be present in patients with relapsing fever or syphilis, these diseases can be distinguished clinically from Lyme disease and therefore should not cause diagnostic confusion. The binding of this antigen by IgM from rheumatic disease controls was typically very weak and could potentially be blocked to avoid false-positive results in this group of patients.”

But this is classic Steere: overblown generalizations based on scanty evidence (only 18 patients), and deeply-flawed assumptions about Lyme disease symptomatology. Perhaps it’s understandable that Steere believed in 1986 that Lyme disease is clinically distinguishable from syphilis. We certainly know now that the two diseases share a remarkably similar range of symptoms.

The IGeneX criteria for IgG and/or IgM WB positivity for B.b. exposure are based on
the presence of at least two of the following bands: 23-25, 31, 34, 39, 41, and 83-93 kDa. According to a recent IGeneX study, the presence of two of these bands on the IgG WB or IgM WB – even in the absence of all other bands – indicates a 96% likelihood of exposure to B.b. It goes without saying that the presence of three or more of these bands indicates a 100% likelihood of exposure. Because IgM antibodies are known to be present about 25% of the time in chronic Lyme disease, both the IgM and IgG WB must be performed even after the first month of suspected infection.

The IGeneX IgG WB has a sensitivity of 68% (i.e., 32% false negative). The IGeneX IgM WB has a sensitivity of 81% (19% false negative). The combined senstivity of the two tests is 89% (i.e., 11% false negative).

SOURCE: Shah, et al., Comparison of specificity and sensitivity of IGeneX Western Blots using IGeneX criteria and CDC Criteria, Townsend Letter for Doctors and Patients (Apr. 2007).

My impression is that with a little bit of analysis – as opposed to the IDSA cookie cutter approach – the presence of just one of the highly-specific bands (23-25, 31, 34, 39, or 83-93) can be a very reliable indicator of B.b. exposure. This is because there are few other infections that would cause an antibody response corresponding to one of these bands. So it’s just a matter of ruling out the other possible causes.

A good overview on B.b. antibody testing was published in the summer 2004 issue of Lyme Times.

Anthony Murawski
Seattle, Washington
anthony@murawski-law.com
Diagnosed with chronic Lyme disease

Gretchen says:

Hello,

I was diagnosed with Lymes by a new primary care Dr. who I went to see as a new patient.

The only reactive bands on my western blots were 41 kd IgG and 41 kd Igm.

She had me tested because:

1) I had a very large insect bite 1.5 years ago that was treated in the ER– it was not the typical bulls-eye, though.
2) 8 months ago I had a strange unexplained sore/cyst on my face that took 2 rounds of IV antibiotics followed by two different kinds of oral antibiotics to resolve.
3) I’ve had a chronic lower back ache for about a year.

I have no other symptoms, and, from what I’m reading, band 41 alone is not particularly determinate of Lyme. I’m not sure I have it but started the 1 mo. course of doxycilin anyway.

Any thoughts?

Thank you!

JBH says:

Keep seeking!!!

Son was unwell for many years.

Diagnosed with Hashimoto’s thyroiditis and began treatment, but still was unwell

We live in Lyme Country, USA, so sought testing

Had one positive Elisa and one equivocal Elisa.

Only the 41 band on the IgG ever was prsesent over 4 years on many tests thru LabCorp and Quest. But it was present consistently.

Found to have high HHV6 (can’t remember if it was the A or B variant, but the one not associated with HIV)

lso had high EBV titers which increased dramatically over 4 years

Finally treated with anti-virals for CFS by renown NYC infectious disease md

However, then further cognitve decline necessitated neuropsych eval

Neuropsychologist suggested Lyme testing by IGENEX

Stunning, positive results from IGENEX on the IgG Western Blot

Has been seen by renown Boston LD specialist who highly respects the IGENEX IgG Western Blot in Boston

Treatment going very well. Steady improvement, but resurgence of arthritis-like symptoms about every 6 weeks but for shorter durations as treatment continues

Now into 2nd year of treatment

Have since read that HHV6 and E-B titers can be markedly elevated in people with LD

Now, daughter, who was diagnosed with Hashimoto’s thyroiditis about the same time as her older brother, is not feeling so well.

Hives. Chills. Memory problems, etc.

QUEST test for Lyme show both the IgM and IgG WB positive for the 41 band.

Awaiting results any day now from IGENEX!!!!

So, keep seeking!

Rosann says:

Dx with Lymes 8 yrs ago/weak,malaise,pain R elbow,flu like symptoms,also found 5 bulls eyes on my back. Tx: doxycycline 21v days.
Over past 5 yrs, panic attacks (was put on Buspar). Always tired, weak, needing naps,woozy,pressure in head and face bone. MD thought perimenopausal, tx with hormones for three yrs. Off hormones now, the above sympt,come and go.Taking Wellbutrin 300 qd. Had bloodwork done by friend 5/19/09:
Western Blot IGG/ 4 reactive bands,18-23-45-58
IGM/ 1 reative band,23. The LD screen was positive with a range of 1.32. I still feel weak in the knees, just finished having problems with R & L shoulder tx: celebrex 200 bid x 2 wks, shoulders better. Now R knee, celebrex restarted.
Can’t find words, mix words up, trouble forming words, feel disorganized (I’m a nurse) can’t remember info obtained, must write everything down. MRI yr ago , nothing significant some concentrations of white matter, no tumors, etc.
BW neg for Lupus,E. Barr.
Should I make an appointment with an infectious disease MD? Eventhough my BW is “negative”?
When I did the W. Block in ’07 I had only 2 pos. IGG bands, and this time I had 4. Does that mean anything?
Anybody have any ideas or suggetions?
Thank you for your time.

Heather says:

Rosann,
From personal experience, I would bypass the Infectious Disease MD. I was referred to one by my OB/GYN. I am very symptomatic, muscle aches, joint pain, brain fog, fatigue, the list goes on and on. My Lyme titer has been positive Twice. They go on to do the Western Blot (through Quest Lab.) My IGM band 41 KDA remains positive. He informed me to “put Lyme out of my mind.” He believes that it is Fibromyalgia. I refuse to accept this without further investigation. I have found a LLMD near me and am making an appointment tomorrow. Good luck to you.

Jasmine says:

Rosanne,
I agree with Heather. I was diagnosed with Lymes in 2005 and have seen 2 LLMDs (after m-a-n-y docs). I have been on the Marshall Protocol for 2 years and have healed tremendously. I’ve been able to avoid 2 neck joint surgeries. I had terrible migraines for 20 years that disappeared on the Marshall Protocol. I highly recommend it for anyone with Lymes & other chronic infections. Well wishes to all.

Ruth Lanham says:

I have been suffering from lymes since 2004 and was unaware that I had it till 2006. I was diagnosed with Borrelia 41.
How ever, I am being tossed around by the medical profession with out any medical care.
I am tired of spending money on physicians who do nothing.
I need some help. If anyone out there can help me with a physician who is lymes literate, please help me.
Brithadashah2008@yahoo.com

Heather says:

Hello-
Just found this web sight seeking info for myself. Just had band 23 and 41 show for second time and wb positive, been to infectious disease she ran a parvo, that was negative now being sent to a rheumatologist???? Very frustrating to say the least. They had me on doxy for 2 weeks and told me to stop. Dr.’s think it is a false positive. I am very symptomatic and extremely tired all the time. Sounds like from what I have read through this sight alot of the same symptoms but not sure what it is!!!!

richard says:

Hi–

About 6 weeks ago I had general malaise, low-grade fever, swollen and painful hands, migrating myalgia and arthralgia. Went to Primary care, tested sed rate, crp, lyme.
He said that Lyme was neg, but when I went in last week saying I still didn’t feel like myself, I learned that the ELISA was equivocal.
Retested Lyme. It’s now ELISA pos, but still (and I haven’t got the specific bands) “western blot negative.”
However, they’re starting me on doxy as I still have myalgia, numbness and pains in my hands, easily fatigued muscles, and I had a unilateral aura in my left eye two weeks ago.
I used to think that Lyme was overdiagnosed, then I read the article that connected the IDSA with the NEJM article.
http://www.medscape.com/viewarticle/586226

any comments?

franny says:

Joint pain all over, brain fog, sinus symptoms, vertigo, the list goes on and on. Live in Columbia County NY-the Lyme capital of the world at this point. Every year pull ticks off and have had two instances of bulls eye rash. Tests always come back negative from LabCorp. Two months ago my test was run by Quest and the Doc said it was negative again, however my copy indictes band 141 or maybe 41 (don’t have test in front of me) is reactive. I would guess as a lay person that this means I have or have had Lyme. Doc doesn’t agree. Any advice on how I should proceed? Thanks.

cat says:

I was diagnosed with lyme in 2003……had a swollen knee no other symptoms, went to orthapedic and he suggested lyme. Got tested positive for lyme went on 4 weeks of doxy…… felt fine no problems, never had the herx. Get tested every year have 58 41 34 30 29 21 20 18…. recently hae had numbess in face pressureback of head… went to see Nuerologist.. mri negative, going for a SPECT test tomorrow… need lyme literate doctor in Boston, Mass… can anyone help me out? Thanks

Nora says:

Cat, what type of facial numbness do you have? My face has had a “numb” feeling since January. It feels sensitve to fabric that touches face. Just doesn’t feel right. I was tested for lyme, bands 23 and 41 present, and W Blot was positive from Lab Corp. I’m getting another test from another lab. Nora

Donna says:

I feel I’ve been a misdiagnosed and untreated Lyme case for the past 15 years. I showed my PCP the large, round red rash on my hip 15 years ago and since the Lyme titer came back neg and I was not knowledgable enough about Lyme (neither was she) I didn’t pursue even when the 2nd set of tests came back neg also 12 weeks later. Over the years symptoms worsening. The healthcare professionals are trying to convince me it’s Fibromylagia or Panic disorder and no one will treat me for Lyme or even give it a try. Latest WB came back with only a 41 pos. band. Now PCP is sending me to a rhumatologist. Still not given Doxy. Anyone else with same prob?? Any thoughts or suggestions? Tempted to go for a consulation at a clinic nearby specializing in Lyme Disease but not sure.

The Central Florida Research Enhanced Borrelia Flow Cytometry test is the most useful Lyme test we use at Florida Detox and Wellness Institute.

In contradiction to posts on various websites, we have received many negative Lyme test results, from Central Florida Research. We have also found many positive results. Turnaround time is only 2 days, after they receive the sample.

Some patients, who originally test negative on the Lyme western blot, test positive, after AHCC, Cats claw, intravenous vitamin C or colostrum are used to boost their suppressed immune systems.

The Labcorp HLA DRB DQB (012542) test can indicate whether you have increased genetic susceptibility to Lyme disease or decreased ability to clear and remove mold neurotoxins.

marion schuster says:

I have been in horrible pain in my left hip since sept- oct. 2009. It started off and on then in december it came more often by the end of january i could not stand it anymore it was here to stay. I was told i had burisitis of the left hip Since then i had 2 MRI’s of my hip and one of my back 2 xrays. the first MRI and x rays show nothing my hip is unremarkable. the doc’s spend 5 minutes with me and reply you have what my wife gets. The ortho specilist at that. My chiro doc put me out of work the ortho say they never put anyone out of work for burisitis. Well maybe it isn’t burisitis. I have just had a lymes test and the IgG p41 shows present abnormal. my doc must not think it is anything they only refered me to take crestor cause my lipid panel is high. did not say anything about the p41 IgG. My pain is now in both hips and thighs swelling comes and goes. some days i can barley walk. I finaly got an appointment at the university of penn in philly. Anyone have any suggestions i need help

shalimar pearl says:

Rosann:

If you’re still reading these comments, get yourself to a Lyme Literate MD (LLMD) immediately. You have Lyme Disease, it’s pretty clear from your symptoms and the fact that you had bulls-eye rashes on your back. The rash alone is a positive Dx for Lyme. Also, you were Dx’d with Lyme 8 years ago! The course of doxy you had at that time was clearly too short. Lyme is a *clinical* diagnosis, which means that tests are only supportive of the diagnosis, not the main factor in determining whether or not you have Lyme. Your symptoms are the determining factors, and ruling out other illnesses with similar presentations. But, after all I’ve read about Lyme and the co-infections, it does sound like you have Lyme. I’m not a medical professional, but I have Lyme myself and oftentimes Lyme patients know more about Lyme, it’s symptoms, and its diagnosis, than so-called doctors do. So get yourself to an LLMD, as fast as you can.

shalimar pearl says:

Marion:

You could have Lyme, but it would take an LLMD (Lyme Literate MD) to make the right diagnosis for you. Your case isn’t as obvious as Rosann’s, but an LLMD would be able to suss out your symptoms with much more accuracy than any other doctor could. Don’t waste your time with the other docs. If Lyme is suspected after a visit with an LLMD, you could start a trial of antibiotics to see if they reduce your pain. If they do, there’s a good chance that Lyme is causing your hip pain. Lyme spirochetes can bore into bone and muscle tissue, so it’s not too far-fetched to think that Lyme could be causing your pain.

shalimar pearl says:

Donna:

Get yourself to a Lyme Literate MD (LLMD) immediately! A bulls-eye rash is always a positive Dx for Lyme disease. I hope you’ve decided to make an appt. at the Lyme clinic in your area. You’re lucky you have one so nearby. Many people with Lyme have co-infections like babesia (a malaria-like parasite) and bartonella (a bacteria that causes neurological problems just like Lyme can). Also, bartonella is famous for causing anxiety and panic disorders. You might be co-infected with bartonella if anxiety/panic has been a big part of your symptom-picture. Don’t doubt your gut feeling that you’ve been misdiagnosed all these years. You really need to trust yourself, especially with Lyme disease, as so many will doubt you, and doubt your diagnosis, and doubt your symptoms. So you really need to honor and trust your own feelings, more so than with any other disease because Lyme is so summarily dismissed in this country. Don’t let the medical community dismiss you, find alternative places to get the answers you need, like the nearby Lyme clinic.

shalimar pearl says:

Franny! Get thee to an LLMD immediately! I can’t believe all of the comments here that are screaming “Lyme disease!” but people are still uncertain because their doctors don’t know what they’re doing. Your doctor is actually dangerous for you right now. You have classic Lyme symptoms, you live in an endemic area, you’ve had bulls-eye rashes. Enough said. You have Lyme, now you need someone to treat it. Search online for LLMDs in your area. Don’t let Lyme do any more damage to your nervous system than it already has. Negative tests don’t mean much in the face of such obvious clinical symptoms such as yours.

shalimar pearl says:

Richard:

I can’t access the article, you have to be a member, but it does sound like you have Lyme. People don’t just *get* symptoms like you have for no good reason. I guess you’d have to rule out other diseases that present with similar symptoms (like MS), and a good LLMD could do that for you, but you have some classic neurological Lyme symptoms. I also had muscle fatigue, an overall feeling of weakness, I couldn’t walk more than 10 minutes at a time, I had numbness in my arms and hands to the point wehre it was hard to hold pens and pencils and use kitchen utensils. I also saw auras and strange “Chinese stars” that would rotate like a wheel and then disappear in 20 to 30 minutes. I had a plethora of other neurological symptoms, too, and before that I was a perfectly healthy 37 year old who had never had any minor health problems let alone major. I was diagnosed in 2008, started antibiotic treatment in 2009, and I’m almost back to 100%, but I still have eye problems. I have a strange pressure sensation behind my left eye, and my eyes often feel heavy and tired, which makes it hard to read and watch movies, etc. I was off of work/school for a year, I truly couldn’t function.

So, is Lyme over-diagnosed? It’s the exact opposite. It’s severely under-diagnosed, and becoming more and more of a problem in this country. People who’ve had it need to stand up and say so, share their stories online and with friends, family, and co-workers.

shalimar pearl says:

This article is vague and the writer seems to be lacking information. It’s misleading and not very helpful to people who are trying to figure out the test-mess that is Lyme disease. Simply put, the tests are poor. The best test out there is the Western Blot through IgeneX, but even that test doesn’t always detect antibodies in people with raging Lyme infections. The reasons for that are complex, and people who are interested can find out why by searching the web. You won’t find that info in this article.

There are plenty of good articles out there, you just need to find them. (Google “Dr. Burrascano’s treatment protocol” for some excellent info by one of the leading Lyme doctors). Ask your family for help if your brain fog is too severe to do the research. There are also good books out there. Go to amazon.com and read the reviews for the Lyme books. You’ll find what you need there.

Bottom line is that Lyme is a CLINICAL DIAGNOSIS, which means that tests are only supportive of the Dx, not the determining factor. Symptoms are the most important part of making a Lyme Dx. Do not get hung up on your test results. You need to see a Lyme Literate MD in order to be accurately Dx’d and accurately treated. Don’t rely on your GP or any other specialist, including infectious disease specialists. Most of them are uninformed and close-minded. Most of all, trust your instincts. If you think your symptoms are weird and there’s no good explanation for them other than a lingering Lyme infection, then you’re probably right. You know yourself better than anyone.

You have the right to seek out the answers you need. If your GP isn’t giving them to you, you need to move on and do your research. Take control of what’s happening to you and find the information you need to get better. People are out there who can help you, you just need to be willing to find them. Get help from friends and family if you’re too weak or foggy to find them yourself.

marion schuster says:

i made an appointment with a llmd friday the 4th i am tired of being in pain

james26 says:

Everyone reacts differently to this disease. However, if you feel very tired, have absolutely no energy, have some ache somewhere, go get yourself checked out and insist that your doctor do a blood test for Lyme. Many doctors do not know much about Lyme disease or insist on seeing a “bull’s eye” spot, which you may not have.

http://www.buygenericdrugs.net/diseases/Lyme-Disease/

Anita says:

I had a sinus infection in January. In Feb, I was out of town and came home very sick for two weeks….chills and fever, aches and pains that made me want to crawl in a hole and I was in bed for 2 weeks. I just never go to bed when sick like that. In March, I went to my ent doc and told him about the experience. He knew I’d had a bad time of it with Shingles coming back repeatedly several years ago but 6 months on an antiviral seems to have helped. This doc drew blood and told me he was going to cast nets and didn’t tell me he was testing for Lymes. When the test came back, I was abnormal for P41 with IgM and IgG and also for P66, but no other lymes indicaaors that would yield a positive diagnosis. He thought I had had lymes at some point but my family doc not only didn’t think I had Lymes, when I told her I was on a waiting list to see a Lymes doc, she insisted that I go to a rheumatologist. I did. She was to determine whether I had fibromyalgia or Lymes. I have never met a doctor like this in my life. While Fibro was used as a reason for my fatigue for years, I never believed it was accurate and so when this doc could not get a response on pressure points except for less than five, I knew Fibro was probably not the diagnosis. I know I don’t have syphillis, HIV or severe gum disease. I did, however had Legionaire’s Pneumonia about 20 years ago. I was retested last week and was called yesterday by the nurse who told me that my results were “immediate” and the doctor would explain that when on my next appointment mid-July. He doesn’t treat Lymes, but believes people need to know the truth, will see me in two weeks. On this test, the IgM was not abnormal for p41 any more, but the IgG was still abnormal for P41, but normal again for p66.
Can anyone explain this to me. I may get a call to make an appointment with someone who treats with long term antibiotics which my GP is trying to persuade me not to do. I’m so tired and working very hard to keep up my strength after working to regain it after the Feb. attack of whatever. If anyone knows a doctor I can go to in the Research Triangle area of NC, will they please post. It may well be that I don’t have Lyme’s, but this doctor told me everything that has been a problem for me can be explained by Lymes. He diagnosed me with atypical vertigo some year ago. My vision has been clear one day and blurred the next and I had 20/15 and 20/20 with correction in April, but yesterday it felt like I was looking through clear jelly. Today, my eyes are fine. These types of come and go symptoms are literally crazy making. I remember my neck hurting badly for a couple of months following the Feb. episode. I just would like to know a reason for this. I do not believe I am a hypochrondiac, but almost any Fibro patient has been through much the same thing as many Lymes patients. Typical meds for Fibro do not work. Hydrocodine does not work for pain, but Aleve does. Sleep is illusive but I have that pretty much controlled now. I know this is not an organized note and this is typical of the brain fog. I have trouble remembering names, recalling words I may have used 5 minutes earlier, pronounciation of words I’ve used all my life, feet and hands that cramp and stretching doesn’t relieve and i have to physically move feet and hands back into position from the cramp. Once this is done, there is no residual pain. But it is happening with much greater frequency now. Any advice would be appreciated.
Nita

Claire Stevens says:

Hi! Can anyone help me understand these Lyme test results, please?
Elisa: positive but “equivocal”
IGM negative
IGG positive
Western Blot: reactive bands: 18,39,43 and 58.

The species specific bands seem to be different for different countries so it’s very confusing! Do I definitely have Lyme..?? Thank you very much for your help!

lotty says:

to Marion Schuster,

hope you are still reading this. Try to get antibiotics somewhere else.

I had in springtime several tickbites. After some time a terrible pain in the joints of my hands. It seems as with this desease every doctor does it very best to mention arguments why you should not have Lyme.
Well thanks to …. they gave me 4 weeks of doxycycline, twice a day. It worked immediately, but then it came back after the a.b.
they would not give me more/longer. So I got it my self and gave my self a dosis of 3 doxy per day, for 6 weeks (yes dont worry i have red it all on the internet and i realize a.b. are not very healthy in the end… but so are the consequences of lyme).
find these antibiotics, quick and more before the Lyme will be in your system!!
good luck!
L from Holland (Europe).

cathy chase-laub says:

placed on antibotics azithromycin 250mg and cefdinir 300mg for my second course of antibotics taking them mon.,wed., and fri.. and then off for three weeks. I took the antibotics two tablets in am of each antibotic( 3 hrs apart) and again in the pm. This course caused a major herx of arthritis type symptom to the hand and feet. I took the antibotics in november2010. The herx symptoms have lasted for 2 monthes. I previously had been tested for rh.arthritis 3 times over the last 4 years all negitive test results. the dr. feels this is a false positive result. Before taking the antibotics, I never had any joint point any here except in lower left sacro joint. I have been throughly tested with mri, x-rays, blood work the past 3 years. Diagnosed with lyme diease over summer 2010. does anyone know how long these herx’s can last? Anyone heard of herx reaction similar to this. Is this permanent new symptons. Dr. is not sure.

Lori Hobbs says:

Anita,

I hope you have found someone by now. I am in Raleigh, NC as well and I have an appointment with John Pittman, a LLMD. I had a tickbite with a rash a year and a half ago. This past summer I started having joint pain in my hands and knees. A month ago, I felt achey and had joint pain one day, by the next day I woke up and could hardly walk. All my joints would pop and crack if I moved any part of my body. GP started running blood test for all auto immune diseases, all were neg. They started running a lymes test, while waiting for the results, I went to the ER with a splitting migraine that went into my neck as well. They did a spinal tap, cat scan, and blood work. A friend that has chronic lymes called, and said, that is how mine started and you need to be on an antibiotic right away. We had to get it from my vet!!! I felt better immediately, but it’s been a week and I still have joint pain in the morning and at night. I also have short term memory loss. My lab work came back and I was neg. on ELSA and only positive for the 23rd band on the WB. My GP tried to convince me I had fibro, and put me on an antidepressant! I hate ignorant doctors. I explained to her, I didn’t care what the test said, you tick down a list of other things you could possibly have, which we did, and then you treat the symptoms. I went from running with my kids 2 or 3 times a week to being bed ridden in two days!! Obviously, I’m not depressed. Be your own advocate for your health and do your own research.

kim says:

Lori Hobbs,

I live in greenville,nc and i wanted to know if you liked john pittman and what you found out. I’m LOOKING FOR A LLD close to home and am thinking about him if hes good. I’m sure i have lyme and have had it for about 14 years being mis diagnosed with everything and my test only showed IgG 23 and IgM 41 present but i have like 35 of the symptoms. should i go see dr. pittman? ANY advice is appreciated. Also I know I was bitten by a tic and found it on my head the next day. My family and i went camping and had gotten back home the night before so it was up ther at least 24 hrs.

Kim

T N says:

Heres my results.

Western Blot IgM; Positive; Bands 31 (+), 41 (+),45 (IND), 66 (+)

Western Blot IgG; Positive; Bands 31 (IND), 34 (+), 41 (++), 83 (+)

I Live in Iowa. I was told my doctors there is NO lyme in Iowa. I was infected for 5 years before treating. Bitten at 17, now am 23 been treating for 9 months. I see a good LLMD in Iowa.

3 Grams Amoxicillin Daily, 500MG Azithromycin Daily, 300MG Rifampin daily. I have Bartonella as well with lyme. Also had Babesia, but successfuly treated it.

Go with your gut, but you HAVE to get a LLMD(Lyme Literate Medical Doctor)if you want to get better.

Research natural products too.

http://www.Nutramedix.com sells herbals that woprk very well against lyme and its co-infections. Heres a chart showing what does what with their products. I use them.

Banderol: Shown to be very effective against borrelia burgdorferi, the cause of lyme. Also effective against Bartonella, babesia, and ehrlichiosis. Known as “keep 3” which means “Kills Everything Except people.”

Samento: Shown to be very effective at eradicating borrelia, many species of bartonella, and ehrlichiosis. Shown to be more more effective for certian indviduals than Doxycycline.

Lakato: Good anti-bacterial properties & anti-viral properties, effective agaisnt Borrelia, Bartonella, and ehrlichiosis. Also Known as “keep 3” which means “Kills Everything Except people.”

Enula: Extract of three different plants, Useful in treating parasitic infections, also effective against certain species of babesia. Good anti-parasitic and anti-bacterial properties.

Houttuynia: Very effective against resistant strains of Bartonella, especially if other treatments fail.

Cumanda: Very effective in treating Borrelia(lyme), very good anti-fungal properties. Also good against Babesia, Bartonella, and ehrlichiosis. Kills Candida as well. Also known as “keep 3”

Grapefruit Seed Extract is also very good to use. Olive Leaf Extract. Milk Thistle.

Lisa says:

I see a lot of people here that had positive IgM P41. I also had the P 41 present. I was diagnosed not with Lyme, but with sero positive Rheumatoid Arthritis. That was a year ago and I have pretty classic RA which is controlled reasonably well with methotrexate and Humira. I was bitten numerous times by ticks over a decade ago when I worked in the Sierra Nevada Mts. Although I had desperately hoped for a diagnosis of Lyme instead of RA it was not to be.

I wanted to post this here for those of you that have arthritic symptoms, have had tick bites, and only have a positive P41. You may want to look more towards RA, PsA, or other rheumatic disease. Early diagnosis and treatment is key with these.

lisa says:

I have a 13 yr old child that tested positive for the 41 igg, but all others were negative. I had the test done to rule it out, because she is having some neurological issues that have gotten worse and spread over the past 22 months. Started with an eye twitch, then a lip twitch, most of the time on the right side of the body, sometimes leftside of lip and eye will twitch. She doesn’t always swing her right arm when walking, and recently her knees have been hurting. She is never sick, and hasn’t had an antibiotic since zithromax in Dec. 09. Any suggestions on what to test for next? In the Raleigh area, been to a pediatrician, who said twitching is normal, Chiropractor said subluxations and to bring her more frequently, did that and she got worse, tried three rounds of accupunture,no change, tried bai Shao with accupunturist, that made it a lot worse, and recently went to a Neurologist who basically thinks it is just a tic and she does it on purpose, insisted on some testing, and just did a sleep deprived EEG, and awaiting results. But today the 41 IGG band was positive, so trying to figure out what the issue could be. Thank you, appreciate any info, you may email me at lisamuohio2@aol.com. Thanks

Erick says:

The paper that reads False/Positive mine had fineprint on bottom with a row of numbers one of these numbers should be circled for instance 1 to 5 is negative result 5 to 10 was a positve result or vise/versus. Only an expeirence Dr. uses a special needle to draw blood with a round tube containing a type of microbial sponge with some type of fluid that catches it for me it was done in 2007. I was positive. No dr. has ever done the test right since then and still very sick i was beyond 8 years with muscle weakness, memory loss, and quit my job, and it mimmicks or moves like a camileon and blends with blood cells mimmicking many painful diseases that will make you crazy. Parkinson, arthritis R/O, fatigue, tension, vision, Vertigo(dizzy spells)etc… and depression and if you already have bi/polar disorder with attention deficit it makes you want to commit suicide cause people around you do not understand how bad Lyme disease is.

Froggy says:

If you question it, PLEASE, do whatever you have to do to get to LLMD, who is willing to treat you. Don’t wait until you’ve lost your loved one to this horrible disease as I have. If I knew a few years ago what I’ve recently learned, my child might still be here with us and sharing her story to help others.

david lejeune says:

hi ive been living in hell for 9 months with what i know now is lyme and co infections,i was finally givin 4 week course of doxy and felt much better,then a month later i started to slip back to the way i felt before doxcy,doctor told me to be patient i waited 1 more month, then begged doctor to test igG and also for co infections tests all positive….now im on another round of doxcy, my joints hurt, eye twitches,leg and arm muscles twitch non-stop,weakness in arms,numbness in limbs, blurry vision, sore throat,dry mouth,rib pain,back pain, and these all change on a day to day basis, some or all lastsfor hrs to days,im 42 yrs old, ive always been very strong physicaly large muscles on arms and legs, now i can sweep the floor and my hands and arms are dead tierd within 10 minutes its so unbeleivable my wife is in complete shock seeing me this way, im trying to be strong for her but i cant imagine living like this forever,im scheduled to see another doctor for muscle issues and going from there ….
so i know im not alone with this stupid disease,thank you for this site helps people like me feel a little better thanks againand wish u all well

Great site. Plenty of helpful information here. I’m sending it to several friends ans also sharing in delicious. And certainly, thanks in your effort!

Reg from MA says:

Hello, Almost 2 years ago my 15 year old son who slept outdoors on scout camp weekend (without a tent/sleeping bag) came down with viral symptoms 1 week later. 2 weeks after the camp out, he woke up and had such muscle pain in his legs, he couldn’t bear weight. He had been tested for Lyme via Immunosciences Lab, Inc.(CA), and all tests were negative, except p 41 IgG Bands. He was hospitalized, put on Gabapentin, with physical therapy for 5 months. He was wheelchair bound, until he advanced to a walker – then a cane. He also had severe fatigue, migraines, stomach pain and depression that got very severe due to being bedridden for so long. We just found out that he tested positive in February 2012, for Borrelia burgodofero antibodies 2:20, with a negative Western Blot. He still remains symptomatic, especially fatigue. He missed 1/2 8th Grade, and most of 9th Grade. He just had a repeat Lyme (Lyme AB) test, which again was Positive 3:10 for Borrelia burgdorferi antibodies, with a negative Western Blot. This kid is constantly foggy minded with stomach pain, fatigued, and describes getting out of bed a painful experience, where he has to force his legs/limbs to move. He still suffers from depression, and his Pediatrician, states that it’s not Lyme, and concurs with his past doctors of a psychosomatic illness / virus of some sort. To say the least this is very discouraging, any suggestions?

tranquil1 says:

Both my 11 year old son & myself have been diagnosed with lyme this year. We both did the “typical” 30 day doxy protocol after failing the amoxicillin we were initially started on. Although we are both better than when symptoms began, some symptoms still linger. My symptoms remain primarily arthritis, foggy thinking, memory/focus issues, episodes of moodiness/depression/anxiety; my son’s include arthritis, “tired” legs/arms/muscles, fatigue, confusion, headaches, memory/focus issues (his diagnosis came much later into the process than mine & so symptoms were more extreme & more neurological in nature). I should mention I continue on a protocol of 3 antibiotics (doxy, tinidazole & cefdinir) + herbs/supplements, while my son is only on supplements. Wondering if this is just “as good as it will get” or if there are other suggestions out there (is there a good LLMD near SW Wisconsin?). I also have an 8 year old daughter who’s been struggling with stomach pain for nearly a year now. She was diagnosed with irritable bowel, but meds are not helping & I don’t feel the diagnosis is accurate. Had her tested for lyme & twice it’s come back equivocal with bands 41 & 66…any ideas for her too?

Jane says:

My physician decided that my symptoms made running a Lyme panel a reasonable thing to do. The Anaplasma phagocytophilum AB IgG titer came back equivocal. So, he started Doxycycline 100 mg bid x 14 days. Only 14 days. When I’d learned a bit more, I called and asked about this short duration of treatment, as this would be a case of 2 1/2 years. (No obvious tick). He said no, even though on the 14th day, the symptoms of extreme fatigue and heaviness and brain fog lifted. I wasn’t the one who pushed for a tick-borne illness diagnosis. By the time I see a different physician, the treatment course will have been interrupted, which is never good. I feel as though I was set up.

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