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Lyme Disease Message Board

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I am 53 years old and have been ill and seeing doctors for 15 years. I was never tested for Lyme disease until last month even though I have all of the symptoms. I did not know what the symptoms were until after I tested positive on the Lyme screen.

I never asked to be tested since I thought you had to have the bulls eye rash. I didn't recall every being bitten by a tick but I did live in Connecticut for 37 years near Lyme Ct. I live in Illinois now and I think my doctor assumed that I always lived here and years ago Lyme was not an issue here but it is now and therefore never thought to test for Lyme.

I was told that I probably had some type of autoimmue disease or FM but it was never identified as my test results for ANA and Rheumatoid factor were sometimes slightly positive and sometimes normal.

My Elisa was 1.59 (positive is > or = 1.10). Western Blot showed I was reactive on only bands 41 and 45. I also have elevated sed rate 48 (> 30 is out of range of normal) and c-reactive protein was 1.09 (>0.08 is out of range of normal) and elevated platelets 461 (up to 400 is normal).

Over the years the sed rate has increased and over the last few years the c-reactive protein has elevated (was normal a few years ago even when the sed rate was elevated). I also have hypothyroisidm and take .125 mg L-thyroxine and I also have thyroid nodules. I have Gerd and take Nexium. I had a bone scan and have arthritis in all of my joints and take Celebrex. I have synovitis around my ankles.

Last year I was hospitalized for intractable vertigo for 3 days. I also developed premature atrial contractions determined by a holter monitor. I started to lose my hearing. I have a mild/moderate hearing loss in the higher frequencies. I had a CT scan when hospitalized for vertigo which showed chronic sinusitis. I take Flonase for that and a diuretic for the heart palpitations. I recently developed a pressure sensation in my head. It only happens when I stand up. The pressure is extreme and I go completely deaf for about one minute and then gradually regain my hearing. Not one of my doctors has ever heard of that symptom.

In addition I have all of the other symptoms of Lyme - fatigue, hair loss, mental confusion. I was also given Lamictal for bi polar illness and Diazapam for sleep.

My doctor said that based on my Lyme results he felt I did not have an active case of Lyme but that I was exposed in the past or that it was a false positive result. He suggested that I go back to the rheumatoloist who would then refer me to an Infectious disease doc if he thought it was necessary. He said they might put me on an oral antiibiotic.

So here are my questions.
Can someone help me with the Elisa and Western blot. CDC would say I am negative for Lyme but isn't 1.59 quite high for an Elisa? If so why am I only reactive on two bands. I understand band 41 is an important band and most patients with Lyme are reative on band 41. I asked about the Igenex test but the doctor said that it was only useful if I had an active case.

Also I live in Naperville Illinois which is 45 minutes west of Chicago and I wanted to know if anyone knew of a good LL doctor in the area.

Sorry for the long post and thank you for listening. Hope you can help me understand what is happening to me.
Hi Reactive, welcome to the board!

I am sorry you have been sick for so long. Although a bulls-eye rash is a definite sign of Lyme disease, only about 50% of people who have Lyme ever get a rash. Lyme disease is the second fastest growing infectious disease in the US after AIDS and the number one vector-borne illness in the US. It is in every state, including IL. Despite this, little is being done to educate the public and medical community.

No Lyme test is completely reliable and results can vary by lab. It is important to be tested by a Lyme lab such as IgeneX in Palo Alto, CA. They use more sensitive testing and list more bands on the Western Blot. Do you know which lab did your test? Below is a breakdown of the Western Blot:

9 cross-reactive for Borrellia
12 specific for Bb
18 unknown
20 cross-reactive for Borrellia
21 unknown
22 specific for Bb, probably really the 23/25 band
23-25 outer surface protein C (OspC), specific for Bb
28 unknown
30 unknown; probably an outer surface protein; common in European and
one California strain
31 outer surface protein A (OspA), specific for Bb
34 outer surface protein B (OspB); specific for Bb
35 specific for Bb
37 specific for Bb
38 cross-reactive for Bb
39 is a major protein of Bb flagellin; specific for Bb
41 flagellin protein of all spirochetes; this is usually the first to appear after a Bb infection and is specific for all Borrellia
45 cross-reactive for all Borellia (sometimes people with Lyme who have
this band positive also have the co-infection Ehrlichiosis)
50 cross-reactive for all Borrellia
55 cross-reactive for all Borrellia
57 cross-reactive for all Borrellia
58 unknown but may be a heat-shock Bb protein
60 cross reactive for all Borrellia
66 cross-reactive for all Borrelia, common in all bacteria
83 specific antigen for the Lyme bacterium, probably a cytoplasmic membrane
93 unknown, probably the same protein in band 83, just migrates differently in some patients

On the Western Blot, the CDC requires a large number of bands to show for it to be considered positive yet many people who have Lyme do not have this many bands show. Lyme doctors often focus on which bands show, some are specific for Lyme.

I cannot understand when doctors test people if they are positive, they are told it is a false positive but if it is negative they are told they do not have Lyme. You have a positive ELISA and symptoms, you need to be treated. Band 41 is usually the first to show and some people who have band 45 positive have the co-infection Ehrlichiosis. It would be interesting to see what your results would be at IgeneX.

It is very important to see a knowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. Besides Lyme, ticks can transmit several co-infections including Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected, and it may affect treatment choice and progress. Babesiosis can cause heart palpitations. It is important to be tested for these by a Lyme reputable lab such as IgeneX.

I do not know of any Lyme doctors in IL. The closest one to you that I know of is in Springfield, MO. Would you like his name?

Having hypothyrodism along with Lyme disease is a double whammy. Is it regulated?

Hang in there okay? Good help is available and you are not alone.

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