Dismissing doctors: How do you find a doctor who can help?

Lyme disease tests are sometimes unreliable but worth doing. Make sure you get a Western Blot, not an Elisa, and find a doctor who interprets the test correctly. I would suggest a functional medicine doctor.

Wow, I hope you find your diagnosis.
You didn't mention the specialties of the Drs you've seen. I have a PID (Primary Immune Deficiency) and had many issues getting diagnosed. The Drs I was seeing didn't even come close. It was an Endocrinologist that found the diagnosis broad diagnosis. From there I knew I needed an Immunologist - and the Endo work gave me the information to find one that specialized in the field I needed for help.

what are your symproms and how do they affect you if you don't mind me asking. I am like the lady that posted the problem.I have constant stiff muscles and now Osteoarthritis everywhere with Erosive type in my hands. Tendonitis in feet/ankles,neck and shoulders. If one pain calms for a while lets say in my right shoulder then my left picks up the pain to keep me on my toes. I started with pain in my right shoulder girdle/neck when I was 29yrs old within hrs of giving birth to my 4th/final child I am now nearing 69yrs old with not one day of being anything but riddled in pain from these stiff muscles,they feel like they made of thick old rope and are being twisted. I demanded being referred to a rheumatologist but although a lovely man they don't deal with Osteo so sent me on my way with a plan of meds which didn't work. How is it there isn't a specialist for this. I go to the pain clinic for nerve ablation but any other shots in my spine don't work and they don't really deal with anything beloew the neck and above the lumbar area.

Lab testing for Lyme disease may be indicated if you don't have the tell-tale rash or a known tick bite. The lab tests are not perfect and two-step testing with both available tests are recommended: ELISA followed by the Western blot test. I've included excerpts from both the CDC and Mayo on Lyme disease diagnosis.

From the CDC: https://www.cdc.gov/lyme/diagnosistesting/index.html
"CDC currently recommends a two-step testing process for Lyme disease. Both steps are required and can be done using the same blood sample. If this first step is negative, no further testing is recommended. If the first step is positive or indeterminate (sometimes called “equivocal”), the second step should be performed. The overall result is positive only when the first test is positive (or equivocal) and the second test is positive (or for some tests equivocal)."

From Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/lyme-disease/diagnosis-treatment/drc-20374655
"Many signs and symptoms of Lyme disease are often found in other conditions, so diagnosis can be difficult. What's more, ticks that transmit Lyme disease can also spread other diseases.

Lab tests to identify antibodies to the bacteria can help confirm or rule out the diagnosis. These tests are most reliable a few weeks after an infection, after your body has had time to develop antibodies. They include:
- Enzyme-linked immunosorbent assay (ELISA) test. The test used most often to detect Lyme disease, ELISA detects antibodies to B. burgdorferi. But because it can sometimes provide false-positive results, it's not used as the sole basis for diagnosis.

This test might not be positive during the early stage of Lyme disease, but the rash is distinctive enough to make the diagnosis without further testing in people who live in areas infested with ticks that transmit Lyme disease.

- Western blot test. If the ELISA test is positive, this test is usually done to confirm the diagnosis. In this two-step approach, the Western blot detects antibodies to several proteins of B. burgdorferi.

"Lyme literate doctors" suggest only the Western Blot. This is controversial. The Elisa may have a high false negative rate, and can be thrown off by autoimmune factors too. Then again, there may be a false positive problem with testing https://bcmj.org/bccdc/diagnostic-testing-lyme-disease-beware-false-positives

The Western Blot interpretation is also controversial but it is better than the Elisa and most docs will agree to do that first. The CDC interprets the Western Blot according to the number of "bands" and Lyme literate MD's (and others, generally functional and integrative docs) look at the bands that are specific to Lyme. In other words, if band 23, which is specific to Lyme, is the only band, some docs will say it is negative and some will say it is positive. Band 41 is often present and can be from Lyme but is not specific to that particular spirochetes but can be from other spirochetes.

Here is info on tests: https://www.lymedisease.org/lyme-disease-test/ There is also a timing issue because if tested too early, there are no antibodies in the blood yet.

Unfortunately I have experience with testing. I tested negative. Then a doc put me on antibiotics anyway. Soon I was fully "CDC" positive. I was told that the meds "brought the antibodies out" but maybe it was just timing. I cannot explain this but only to say things with Lyme are not as neat as some will try to say.

Have any of you heard of the "Lyme wars"?!

@windyshores, I agree Lyme disease testing is highly controversial. You're quite right, and as the information from Mayo Clinic states, the timing of testing is important to note. The tests are most reliable a few weeks after an infection, after your body has had time to develop antibodies.

I like your recommendation of seeking diagnosis from a Lyme literate doctor. My husband got bitten by a tick while we were in a high-risk Lyme region. However symptoms only appeared when we were home and local doctors were unfamiliar with abnormal indicators. Luckily our local PCP consulted with Lyme experts, shared photos of his atypical, non-bull's eye rash and he was able to get early treatment. In his case, the lab test confirmation was unnecessary and all ended well after a strong course of antibiotics.

I honestly don't know how I feel about testing and treating Lyme, or about Lyme literate doctors. I do think functional medicine docs can be helpful in situations where conventional docs aren't able to help, because functional medicine doctors look at how the whole body works, each part connected to the others.

I've seen Pain specialist, Orthopedic specialist, Internal specialist, Rheumatology specialist, Gynecologist, Infectious Diseases specialist, Psychology specialist. I have had MRSA for over a year, Shingles around my eye and been dismissed that it was something else, UTI's, BV(Gardnerella -which during my yearly I had to beg, plead and argue with gynecologist to test for something cuz things were not right, after she kept giving reasons and excuses to explain my reasons away to test me ...hmmm... I was right...GRRR), Polymorphic Light
Eruption, Carpal Tunnel, Plantar Fasciitis, Thrombocytosis, Fibromyalgia, Psoriasis(on and off since I was 2), Multiple fatty deposits on my head, High Cholesterol/Hyperlipidemia Mixed, Mono, Strep throat(even had Mono and Strep at the same time), Hernia at age 7, Heart Murmur when I was 6 months old and it went away, celulitis, Gastrointestinal infection, IBS, Hyperthyroidism, Hypothyroidism, Vitamin D Deficiency, Adjustment Disorder Mixed Reaction, Depression/Anxiety, Depression Major Recurrent Moderate, Koilonychia Acquired, Migraines, Neuropathy Peripheral, Numbness Hand, Raynaud's in hands and feet, Scoliosis, Pain in Lumbar and Thoracic, Pain in both shoulders, Sacroiliac joint dysfunction, narrowing of C5-C6, minimal straightening of Lordosis, degeneration of my facet joints, sclerosis of the greater tuberosity, lazy eye, Thrombocytosis Unspecified, kidney stone, ringworm etc. etc. etc.....lol...I have done a immune system genetics test which came back not finding any pathogenic variants but found 4 variants of uncertain Significance (Variants they don't know enough about to determine any pathogenic relation to disease). I have all these issues and symptoms but tests always seem to show negative or I am missing the 1 or 2 significant criteria in order to be diagnosed for any diseases that are so close to anything! I don't have Lupus, Hashimotos, Psoriatic arthritis,
etc...etc...etc... They have never scraped my skin to test for a negative or positive identification for psoriasis so then when I go to Rheumatology specialist and he sees no evidence of psoriasis( because it is in dormant state) and nothing in records except me saying I have had it I am made out to be crazy or untruthful or making up stuff! Also after 3 separate
radiologists with 3 different xrays in a span of 4 years that state there is small erosion of my bone on finger the Rheumatologist states in my record that he looked over one said xray and saw no evidence of small erosion!! WTH. Patients should not be expected or have to doctor sit and battle over things that we do or don't know to try and fix ourselves or get them to step up to our plate! Sorry this is just a cycle of the lifelong continuation of frustration, disappointment, dashed high hopes of getting answers or getting better but I know I am not the only one . It feels good to vent a little and be emotionally validated.

They say I don't have Lyme disease either.....I do appreciate you asking about that, Thank you mikaylar.

Hi 7lilsnkr, I'm reading down your list of medical issues, and it reads so much like mine does - I have been "diagnosed" with many of the same items on your list. (I would name them but it would be much of the long, long list.) I also am frustrated by the difficult journey of diagnosis.

Many of your medical issues are also compatible with those that have Primary Immunodeficiency (also known as PID) patients have. One in 10,000 have a PID. That statistic alone makes it difficult to get a diagnosis. I have a subset of PID, Common Variable Immune Deficiency (CVID). About 1 in 25,000 have CVID. I was finally diagnosed at age 65. Your comment about Immune genetics testing makes me wonder if your Immunologist was leaning that way. Genetics testing, though, is not how most PID patients are diagnosed. It requires antibody testing, IgG, IgA and so on. As I mentioned in an earlier post, got my initial "hint" through my Endocrinologist. Generally, Endos don't do immunology treatment, but it got me on the right track for PID diagnosis. The number of PID cases are so small that there are few doctors that specialize in it. I struggled to find the right doctor. In the Pacific Northwest, there is a concentration of immunologists that specialize in antibody deficiency testing and treatment at Seattle Children's Hospital. I learned about it when I called and asked them for a referral for an Immunologist. I was told they take adult immunology patients. The Immunologist worked with my Primary Care to do preliminary blood work. This was a deeper look (than the Endo) to see if I had blood work showing I had any condition that looked like deficiency. I passed, or failed, depending on how you look at it. This allowed me to be taken on a Seattle Children's Hospital patient. My first appointment, blood work at an even deeper level was done. When that blood work came back it showed I have CVID. With that diagnosis I began treatment and am finally beginning to feel better.
I can't possibly diagnose you but I hopefully the information will help in your search. You might also look at the Immune Deficiency Foundation. They have an excellent website with lots of information.