Your symtpms are very similar to mine when it came on...hard.

I am NO Doctor...so this is not advice.

However, I would suggest the Al LLMD....it is health. Invest now...or, invest MORE later.

Trout

I have had 2 Western Blot test (the last testing was done by IGeneX). Both test results came back negative per the CDC guidelines.

I had some positive and negative and the majority were IND.

My symptoms are also like ALS symptoms. I have not been dx for that either. This has been going on since 10/04.

I have constant twitching in my toes, and lower part of legs. Increasing twitching in other parts of the body.

My face appearance has changed with twitching and are concerned about Bell's Palsy. I have jaw weakness and fatigue especially when talking or reading outloud.

I also have electric like pains that will strike unexpectantly all over. Does anyone else have those among their Lyme symptoms?

I might add that upon my insistence for some help although tests were negative, my primary has be on 200 mg Doxycycline for 30 days. My objection there is to be re-tested after that to see if any of the IND bands would become positive.

I have 12 more days to go on the Doxycycline. I must say my symptoms are the same but some are worse and there are now new ones. I know about the Herxheimer reaction.

I have read that ALS can get worse when taking Dox although my doctor has not heard about that. So now I am really confused. I can go to see a Lyme physician in AL but will not be covered by my HMO out of state.

Also will not be covered by Medicare unless approved by them ahead of time.

Thank you for any reply. (end quote)

If you go to "Support Groups" on the menu on the left side of this page, you will be able to contact some people in your area. I am sure they will be able to advise you on who to see in your area, etc.

Fortunately I found an LLMD who was willing to make a clinical diagnosis and treat me without a CDC positive WB (only tested positive for Band 41, no indeterminate bands).

Months later, I eventually tested positive for mycoplasma. With proper antibiotics to treat both infections I'm now on the road to recovery.

For now you need to forget about your HMO and/or Medicare and get checked out by an LLMD. Cross that financial bridge when you get to it. Can you really put a price on your own life?

A regular doc likely would not know that; an LLMD would.

Another thing:

Today's "negative" western blot, after being on antibiotics, can turn into tomorrow's highly positive western blot.

So please don't put much stock in them until you're seen by a doctor experienced in Lyme.

Another thing: He's probably seen MANY people with ALS-like symptoms, and found that instead of ALS they have Lyme. That might prove to be very reassuring indeed.

Good luck... hope the "reply" button is working for you and the password genie is locked up in his bottle!

:-)

Position Papers
ILADS' Position Paper on the CDC's Statement Regarding Lyme Diagnosis

The Center for Disease Control's (CDC) position on diagnosing Lyme disease (LD) is an oversimplification of a complicated clinical condition.1 The CDC's two-tiered approach--using an ELISA and confirming positives by both IgM and IgG Western blots--potentially misses more than 40% of the patients. One year after the tick bite, this percentage may be greater than 50%.

The two-tiered protocol was developed from studies using Lyme patients presenting with the Erythema Migrans (EM) rash and arthritis or neuroborreliosis. However, not all Lyme patients have these symptoms. In one of the NIH-sponsored studies, blood was taken from Lyme-suspected patients every two weeks for a period of four months, and any positive event (defined by the presence of 5 of the 10 bands by IgG Western blot) qualified the patient.2 In contrast, other NIH-sponsored research indicated that many defined Lyme patients did not meet the CDC Western blot criteria (the presence of 5 of the 10 bands), and that the IgM response was a useful predictor of infection at all stages of disease.3,4

Lyme disease is a problematic diagnosis. The position adopted by the CDC makes it more complicated. Many patients do not elicit an antibody response great enough to be positive by currently available ELISA assays. In fact, studies conducted by the group responsible for Lyme Disease proficiency testing for the College of American Pathologists (CAP) concluded that the currently available ELISA assays for Lyme Disease do not have adequate sensitivity to be part of the two-tiered approach of the CDC/ASPHLD, where only ELISA-positive samples can be tested by Western blotting.5 Furthermore, if patients are treated early with antibiotics, their antibody response may be reduced or curtailed.6 In addition, initial mild flu-like symptoms may be overlooked. Later, if the symptoms return, most of the antibody markers may have disappeared. Aguero-Rosenfeld et al. showed that only 70% of the documented Lyme patients in their study had a significant antibody response.3,4 They suggested that the degree of antibody response might be related to the length of time the EM rash persists. They also reported only a 64% rate of IgM to IgG seroconversion.

The reason that most ELISA assays are inadequate as screening tests is that they were not designed by the manufacturers to be sensitive at the 95% confidence level, the level typically required for screening.5 In fact, Luger and Krause found up to a 56% false-negative rate (depending upon the commercial kit), when compared to their clinical diagnoses.7 Golightly et al. observed a lack of sensitivity (over a 70% false-negative rate) with commercial kits in early Lyme disease and from 4 to 46% with late manifestations of Lyme disease.8 Thus, independent of the ELISA results, using both IgM and IgG Western blots may improve laboratory detection of LD.

The immunoblot or Western blot is the most useful antibody test for B. burgdorferi, when performed in a quality laboratory by experienced testing personnel. It is necessary to evaluate both IgM and IgG antibodies to B. burgdorferi. Studies by Ma, et al. and others point out the large degree of antibody variability in patients with clinically confirmed Lyme disease, including patients with physician-diagnosed EMs.9 Variability in the Western blot reflects the variability observed in the immune response of other diseases, including Hashimoto's thyroiditis, SLE, Sjogren's syndrome, and scleroderma.

Some studies show that it is common to miss patients if only the CDC serological criteria are used.3,4 Indeed, the CDC/ASPHLD criteria for a positive B. burgdorferi Western blot are very conservative.1 Five of ten antibody bands are required for IgG positivity. This cut-off is based on the assumption that all Lyme patients, even those without arthritis and neuroborreliosis, have similar immune systems and responses. The diversity of the immune response seen in other diseases is also disregarded. The CDC's studies were problematic in that they primarily focused on patients with early Lyme disease (usually within four months of an EM). They also collected blood in most patients every few weeks during this four-month period and counted any positive event (five out of ten bands) as LD, even if the same patient had a negative test at a different time of the study.2

Engstrom et al.2 and Aguero-Rosenfeld et al.3,4 confirmed that almost one-third of all Lyme patients are IgG negative during the first year. Two years after a physician-diagnosed EM, 45% of the patients were negative by ELISA. In another study, Aguero-Rosenfeld et al. showed that the ELISA response declined much more rapidly than the Western blot response.4 Their study also demonstrated that the two-step protocol of the CDC/ASPHLD criteria would fail to confirm infection in some patients with culture-proven EM. Furthermore, although a majority (89%) of patients with the EM rash developed IgG antibodies by Western blot sometime during disease, only 22% were positive by the criteria of the CDC/ASPHLD.4 The Engstrom et al. study did not use the IgG blot criteria of the CDC/ASPHLD.2 They found that 2 of 5 bands gave them a specificity of 93 to 96% and a sensitivity of 100% in the 70% of patients that produced antibody. This could imply an even lower sensitivity would be obtained had the more stringent CDC/ASPHLD criteria been used as a guideline for laboratory screening.

The CDC/ASPHLD criteria for a positive IgM Western blot include the 23-25 kDa (OspC), the 39 kDa and the 41 kDa, but overlook the 31 kDa (OspA) and the 34 kDa (OspB).1,10 Yet the CDC reported a specificity of 95% for the IgM Western blot, based on several hundred negative controls. Engstrom et al. reported specificities of their IgM Western blot to be between 92 and 94%.2 Some studies have suggested that the IFA and ELISA IgM assays may cross-react with ANA, EBV and other spirochetal infections,11 while other studies did not observe this with either IFA or Western blot.9,12

A major disagreement with the CDC/ASPHLD group arises from its statement that the IgM Western blot should be used only during the first month after tick bite. They have seemingly overlooked their own reported excellent specificity of the IgM Western blot. Studies by IGeneX,13 Steere's group,14 and Jain et al.15 emphasized the importance of the IgM Western blot in recurrent and/or persistent disease. Sivak et al. found that the IgM Western blot had a specificity of 96% if the patients surveyed had at least a 50% probability of having Lyme disease.16

It is important to note that a positive Western blot, to IgG and/or IgM antibodies, merely implies exposure to B. burgdorferi. The Western blot is only part of the test battery and is not, by itself, confirmatory for Lyme disease. One cannot conclude from Western blot results that a patient has Lyme disease, because that requires a clinical diagnosis. It must also be kept in mind that these antibody tests are not static but in fact change over time. Thus, a patient negative by the Western blot may seroconvert to a positive blot with treatment. Conversely, a patient positive for IgG response may develop another IgM response, suggestive of a recurrent infection.

A considerable body of literature demonstrates that some seronegative Lyme patients are positive for either the Lyme bacteria DNA or pieces of the unique Borrelia outer surface antigens.

Studies by Goodman et al. found that 30% of their patients with early Lyme disease were positive by PCR.17 This percentage is comparable to blood culture data by others.18 However, some studies could not obtain positive cultures or positive PCR from patients with acute Lyme disease.19 Both of these methods are technique-dependent. Manak et al. were able to detect 33% of early Lyme and 50% of late stage Lyme disease in patients not on antibiotic therapy.20 Most of their patients became PCR negative within two weeks of antibiotic therapy. They also found that during a relapse, patients might become PCR positive for a short period of time. On the other hand, using a combination of genomic and plasmid PCR, Bayer et al. found that 74% of patients with chronic (persistent) Lyme disease were PCR positive in urine samples.21

Persistent/recurrent (chronic) infection is a unique diagnostic problem because the IgG response may be absent in more than 50% of the patients.2,3,4 Thus in addition to the IgG Western blot, an IgM Western blot should be used. Assays that focus on antigen detection or DNA may be particularly useful diagnostically during persistent/recurrent disease.22 B. burgdorferi antigens in urine have been detected in animal models with Lyme disease.23,24,25 Similarly, B. burgdorferi antigen in urine has been seen in humans and appears to be a useful diagnostic tool.23,24,22

Data extrapolated from vaccine studies and CDC lectures suggest that the number of patients with Lyme Disease may be ten-fold higher than what is being currently reported. In spite of this, the CDC seems to be more concerned with diagnostic criteria that prevent false positives, with little concern for false negatives. A system with better balance in regard to this issue is urgently needed for accurate statistics concerning the magnitude of the number of patients with Lyme disease.
http://www.ilads.org/cdc_paper.htm

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Updated 08/01/05

Posts: 10564 | From PA Where the Creeks are Red | Registered: Jun 2003  |  IP: Logged | 

quote:

---

Originally posted by Michelle M:
WHICH bands on your Western blot were positive? Because "CDC negative" doesn't mean much! Many of the bands are so specific to borrelia burgdorferi that it COULD ONLY BE THAT.

A regular doc likely would not know that; an LLMD would.

Another thing:

Today's "negative" western blot, after being on antibiotics, can turn into tomorrow's highly positive western blot.

So please don't put much stock in them until you're seen by a doctor experienced in Lyme.

Another thing: He's probably seen MANY people with ALS-like symptoms, and found that instead of ALS they have Lyme. That might prove to be very reassuring indeed.

Good luck... hope the "reply" button is working for you and the password genie is locked up in his bottle!

:-)

Michelle

---

In answer to your question: my Western Blot test results were:
IGG: Positive Bands - 28,30,41 Neg: 22,31, 37,73, 83 & 93. IND - 23-25, 34, 39, 45, 58, 66. IgM: Positive Bands - 18, 28, 41, & 66. UND - 30, 39, 45, 58 & 93.

quote:

---

Originally posted by pq:

lyme can become als.

---

But even better, you're goin' to Alabama with a banjo on your knee and letting an LLMD tell you that. That makes me feel a lot better!

I hope you'll keep posting and tell us what your LLMD has to say about all of this (omitting his last name, a'course).

Best of luck to you!

Being positive by CDC guidelines only says you can be included in statistics. It never has meant that you are not infected with the disease.

You may never test positive even if infected with Lyme disease. That is why Lyme is a clinical diagnosis.

These are only antibody tests and aprx. 36% of patients never make antibodies. Other people for various reasons have false negatives.

Both.

Lyme can cause ALS but you can get worse on certain antibiotics if you have a tick virus which is associated with ALS.

I had many ALS-like symptoms. They are all gone with 9 months IV Rocephin. Orals did not work for me and IV did nothing until I was on it for 6+ months. I just got worse and worse until one day it turned.

Take care,
Sarah

I don't think it is correct to say ALS is caused by lyme disease. It is either a disease all by itself or it is lyme.

Mycoplasma can also cause ALS symptoms, I'm living proof with a positive PCR from my CSF.

Most diseases that consist of only symptoms mostly likely will be determined to be undiagnosed bacterial or viral infections down the road.

Stephanie is 100% correct, my neuros say the same exact thing. Patients will present with weakness before presenting with twitching.

I mean some patients test positive for lyme and also appear to be positive for als. There are no real studies on which to hang your hat.

That's not to say there isn't a connection, but it's far from proven. There's not much proof that lyme treatment helps als patients. People want to believe, but the truth is much sadder.

Perhaps there is some connection, but I think it's too late.

I mean by the time you have als, any lyme treatment is useless. I mean by the time you start twiching, it's real unlikely that the lyme treatment is helpful.

I speak as someone who wanted more than anything for the lyme als connection to be true. Where are the success stories, the real als patients who recover? I have only heard rumors. And that's not enough

Als does not effects the mind. That is not the case with me or a lot of lyme patients.

Most, if not all of my als symptoms are gone.
Als is also a clinical diagnosis.

Most of what I read, als progressively gets worse.

I am not a doctor, but just letting you know my experience.

There is plenty of info. on this site that will help you better understand.