Went through Lymes for several years and got a picc line inserted for 28 days. I also came down with Hashimoto's Thryoiditis and bad Fibromylagia. Also an "Autoimmune Phenomenon " which is what the doctors call it. I take Plaquinel same as Lupis patients. Today I just got results from a new lab test. Positive Epstein-Barr VCA AB IGG (4.48H). I recently started Lipitor statin for high cholesterol. I got it down to 190 total. On this lab test it went up to 205. Also, my liver enzymes are mildly elevated.
*Does anyone with Lyme disease have this problem? I'm trying to figure out if it comes with the territory of Lymes or if this is not related at all.
I am guessing you have been treated by an infectious disease doc or a rheumatologist -- ? A common treatment for Lyme as prescribed by docs in those specialties is 28 days of antibiotics, tho not often via PICC line, which is a more aggressive an approach than oral antibiotics (doc's discretion, and they get points for doing so).
I am guessing however that you were not tested for co-infections that the Lyme ticks often carry about half the time, and thus you have not been treated for any of those, if you have them. They are their own measure of misery, but are seldom recognized by non-Lyme specialists.
Hashimoto's is classified, to my understanding (not medically trained here!) as an autoimmune disorder. On the flip side, Lyme can also cause thyroid problems, and Lyme is not autoimmune -- it is a bacterial infection. My thyroid function was suppressed for a while when I had Lyme, but it snapped back as soon as the Lyme was treated.
Fibromyalgia is not a disease with a known cause, but is instead a 'syndrome' -- a collection of symptoms seen in a population and so given a name even tho the cause is not known.
This lines up with your docs saying you have an 'autoimmune phenomenon'.
Epstein Barr is a viral disease. Lyme is bacterial, so I would guess that E-B is not related to possible Lyme, and could just be an extra bonus disease you were unlucky enough to get.
You are being treated with Plaquinel, which I understand is thought to suppress the immune system, but that the mechanism is unclear by which it does so.
Elevated cholesterol could be for a number of reasons, some genetic.
So. I am guessing from the list above that your docs believe you have one or more autoimmune conditions. There is a strong view in parts of the medical community that continued symptoms of Lyme after antibiotic treatment for a few weeks is ... an autoimmune reaction to an infection that is no longer there, because 28 days of IV antibiotics *should* kill any bacteria.
Your remaining symptoms are likely attributed to an overreaction of your immune system trying to kill a now-cured infection, like one of those little circus dogs that does back flips over and over forever. It just doesn't know when to quit.
The problem is this: Lyme bacteria have characteristics unlike most other bacteria that we encounter, and so the treatments that work on other bacteria don't usually work on Lyme. Lyme, like tuberculosis and leprosy, has a very slow reproductive cycle, and it when the cell wall is breached during reproduction (as the cell wall splits to make two separate cells) that antibiotics are best able to kill the bacteria. Most bacteria we encounter reproduces every ~20 minutes, so I have read; Lyme on the other hand reproduces every ~4 hours (some say longer), so what kills regular bacteria only dents Lyme bacteria and they survive. Standard treatment for TB is 18 months of antibiotics; I know someone who had it, got it from living abroad.
In addition, Lyme has a trick of going into a slimy shield called a biofilm, where the immune system cannot locate the Lyme to kill it, and Lyme also likes cartilage and other areas of low blood flow, where the immune system is also less likely to find it. Like bad guys hiding in a dark alley, the cops patrolling Main Street aren't likely to find them either.
So. Your docs sound like they are following the so-called mainstream view of Lyme. I am sure they are very good docs, but perhaps not critical thinkers about something as tricky as Lyme. There is a huge amount of ugly politics surrounding Lyme, and it tends to cause non-Lyme-specialists to sneer and harden their position that Lyme is hard to get and easy to cure.
My suggestion: quietly find a Lyme specialist for a work up. I wouldn't necessarily tell my regular docs I was doing so, because it can cause really bad reactions in the docs, who think of Lyme docs as witch doctors. Some Lyme docs are a bit odd, but not all of them. It's cutting-edge medicine, and Lyme ain't going away: it is an emerging disease.
I personally went through 20 (count 'em) highly trained and experienced MDs of all types before being diagnosed with Lyme, but Doc #20, who ordered the Lyme test, did so because everything else had been tried. When the test came back positive, she quietly assured me that I couldn't possibly have Lyme, because she had patients with Lyme, and "they are all near death." Said only in the gentlest of tones, of course.
I took the test results to a Lyme specialist, was diagnosed with Lyme and a co-infection carried by the same tick, was treated, and am WELL!!!
So. In your situation I would find a Lyme doc for a work up. If you like, we can give you ideas on how to do that. I gotta run, or I would write it all here right now.
You'll see the term LLMD in places: it is not a title or a degree, but is patient slang for an MD who truly understands Lyme: a 'Lyme-literate' MD. An LLMD never calls him/herself that, but we patients use the term to differentiate the clueless MDs from the LLMDs.
Let us know if we can help guide you to an LLMD. Best wishes!
Yeah, sounds like you're still infected. My LLMD's PA has treated over 5000 patients, and she told me that it's not uncommon to see elevated virus levels in late stage Lyme patients. Lyme can suppress the immune system, allowing previously dormant viruses to flare up, primarily those in the herpes family, which includes epstein-barr. High virus levels contribute to malaise and fatigue. Some late stage Lyme patients are diagnosed with Mono when they test positive for EBV. It's not actually a misdiagnosis, it's just not the only thing going on.
Bartonella is a coinfection of Lyme that also suppresses the immune system. It would be worth getting tested for Bartonella to see if you're dealing with that, too.
I also encourage you to go to a LLMD. It's your only hope to get treated properly.
I am currently seeing a LLMD who says I still have Lymes that may or may not be in remission. I'm also seeing my internist who subspecializes in infectious disease who says once he gave me the picc line for the 28 days, then all the parasites are dead. He says that what I'm feeling now is the aftermath of what the Lymes left me. I have found that half the doctors "do not" believe these parasites can be killed and half believe they "are" dead. So who do I believe? What am I to think?
BTW- I was tested for co-infections from my Lymes doctor and it didn’t show any. Also, the Lymes brought my Vit.D level down to 8.5 (ref 30-100) which caused me to get osteoporosis.
Unfortunately I spent the 2nd half of my 50’s being very sick at home and in hospitals. For three years I was told that it sounds like I have a microscopic cancer cell..or…RA. The docs had me dying. One doctor actually told me that “ There’s a beast in me and it hasn’t shown it’s face yet”. Huh?? Would you believe that?? I was depressed and anxious for awhile but then came to accept my pending death. I made sure my will was in place and made sure all the funeral stuff was in order. I asked for my lymes test when I first got ill since I had it twice before about 25yrs earlier. No doctor would give it to me because it wasn’t “warranted”. Really????? Eventually my lymes test was granted and it DID come out positive. I just now in my low 60's and I’m still here, alive and kicking but not well, thanks to the prolonged diagnose. I don’t have much faith in doctors anymore. I was in different hospitals and saw over 20 doctors. I, the patient, had diagnosed myself at the very beginning. What’s wrong with this picture?
Ten percent of Lyme patients get Hashimotos, so I think you can assume that is most likely a consequence of Lyme.
Ten percent of Lyme patients (or maybe it was higher than that) develop autoimmune antibodies sooner or later - I have these and so far nobody has identified them as a specific autoimmune illness. The ANA titers go up and down in proportion to how severe my Lyme titers are in any given period.
I am not sure if your "autoimmune phenomenon" is this - did the doc give you any more info on what exactly it means? How do they know it is something distinct from the Hashimotos?
To keep it (and any autoimmune activity) as low as possible you need to make sure you get plenty of vitamin D. My lyme doc prescribes me 200IU daily, which is a low and cautious dose for adults.
As for lupus, I presume they are giving ypou plaquenil as a precation in case you have lupus? You certainly would not be the rfirst person with lyme misdiagnosed with lupus.
Fibromyalgia pains and other symptoms are all part and parcel of Lyme so I thinlk you can ignore that as a separate diagnosis, it means you still have active lyme disease.
Do you know about lyme bacteria going into a dormant form, called "cysts"? This enables them to hide from antibiotics and survive hidden inside you.
Plaquenil breaks open these cysts, which means - assuming you didn't get rid of lyme under previous treatment - that taking it will be opening up the reserves of cysts and maintaining a steady stream of active borrelia spirochetes to keep your symptom level quite severe.
What a lyme doctor woudl do is prescribe plaquenil along with antibiotics to kill the bacteria as they "hatch" out. Taking plaquenil without this means your immune system has to do the job alone. Those of us living with chronic lyme of course know it cannot manage this job without help.
My overall impression of your really stressful-sounding story is that you've got doctors floudering all over the place to explain yhour symptoms becuse they simply don't know the first thing about lyme disease.
I lived 26 years with doctors misdiagnosing (and medicating me) for all manner of nasty illnesses because they were clueless about Lyme.
I am really sorry to hear you are so il at the moment and clearly getting scary diagnoses as well. I do have to strongly agree with Jackie that you shoudl get to see a good Lyme expert and hear his explanation of what it going on, and how to treat it.
In the past I supposedly had Crohns disease, epilepsy, asthma, Reynaud's syndrome, ulcerative colitis, pancreatic cancer, Addison's disease and Chronic fatigue syndrome. What a relief it was to trade all that lot in for an infection that can be treated with antibiotics!
I think there are an awful lot of us Lyme patients who diagnosed ourselves. I did, too. It's stunning how doctors could tell you you're dying of a mystery disease, and yet refuse to even test you for Lyme disease. RA is one of the top misdiagnoses for Lyme, so consideration for Lyme should be automatic when RA is suspected.
The "official" opinion of the medical establishment, as stated by the IDSA's Lyme Committee, is that Lyme is always cured by 1 or maybe 2 months of antibiotics. It's ridiculous as there's plenty of evidence to the contrary. Someday the whole sordid story will come out, and as Dr. Kenneth Leigner says, it will be a "shameful" chapter in American medical history as patients were left to suffer the devastating effects of Lyme Disease.
You can see a recent post I did here with a link to an article about Biofilms. It'll explain why some docs believe it can't be eliminated in some people with severe and long standing infections.
Negative tests for coinfections don't exclude anything. I read one doc who said that mainstream labs almost never find Bartonella, whereas IGeneX often does. I tested false negative for Babesia 3 times, including 2 tests at IGeneX. A good LLMD will go by symptoms. Untreated coinfections usually result in treatment failure for Lyme.
Glad you're feeling better, but sorry you're not well yet. Hang in there!
The others have done a great job of giving you information so I won't repeat it.
But I do want to touch on the cholesterol issue.
There are people (who are reputable scientists) who will say that the cholesterol bar has been lowered over the years simply to prescribe more statins. Ka-ching!
I happen to believe them.
Welcome to this group and I hope that you can receive much help from talking with us.
Borreliosis is Lyme disease have you tested positive for it? through Mycoplasm serology? and did you take the 1-3 year x3 diffrent antibiotics by a LLD.? Epstein- Barr is more associated with Viral infection .
new technology JSR+film testing. GET IT DONE WILL GIVE YOU ANSWERS .
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