My daughter, 29 y.o., has been suffering for the past 3 weeks with severe muscularskeletal pain, raging headaches, fatigue, etc. She just rec'd bloodword results pointing to Lyme. 20 years ago, we went through the same issues-she started showing symptoms (same as she is having right now) a week after coming home from a sleep away camp in NJ...never getting a diagnosis. She was tested non-stop for Lyme (had to go to Westchester Medical Center in NY for the Western Blot), Lupus, CFS, JRA, EBV. EBV came back as having had it, but nothing ever showed up active or positive. She had a weird rash she would get on her face, joints-but by the time we go to the doc each time, they would disappear. I finally had to take polaroid pictures of the rash so we could at least show what it looked like to the docs...Still no diagnosis. She had spondyloarthropathy when she was little as well. When she got sick this time, I flipped...saying BTDT 20 years ago with her..and Please, God..not again. Is it possible this bacteria laid dormant these many years...to rear its ugly head recently?
Welcome. It can lie dormant for long periods of time. I had a bullseye in 1992 and got very sick. It took me five years to recover. I was in remission for 7 years and it all came back after having surgery.
Was your daughter also tested for co-infections that sometimes are carried by the same ticks? I don't know what the state of the art was 20 years ago on such things, but tests for ehrlichiosis, bartonella, babesia and perhaps others are usually done now.
I was diagnosed with Lyme and babesiosis several years ago and my symptoms were very similar to what you describe: severe musculoskeletal pain, raging headaches, fatigue. Some days I could not get out of bed; it was worst in the morning, but not much better the rest of the day. The severe pain began to recede after a while, and I think it was the babesia that caused most of that.
Finding an MD who specializes in Lyme and its co-infections is the best thing to do, to ensure that your daughter gets the right diagnosis and treatment as needed. It's my understanding that Lyme can go dormant when not completely eradicated, and can come back again when one is under stress such as other illness, an accident, etc. The Lyme bacteria are very good at hiding in the body where antibiotics don't reach them easily.
Lyme specialists can be internists or infectious disease doctors or other types of MDs, but the key is that they understand that Lyme is a tricky disease to deal with and approach each patient flexibly. These drs are sometimes called as a shorthand term 'Lyme Literate MDs', or 'LLMDs'. You can google 'how to find an LLMD' and you also can look at the ilads-dot-org. It's an organization focussed on Lyme and coinfections.
I'm very sorry to hear about your daughter's illness and can imagine how you are feeling.
She was tested for ehrlichiosis, bartonella, babesia this time...I know the Ehrlichiosis came out negative...Not quite sure about the Bar and BAB tests. She is planning to see a lyme specialist, tho and has been on Doxycyclene for about 6 days nows.
I am sorry to hear about your daughter's health problems. Unfortuantely Lyme seems to work in mysterious ways like this. I was bitten by a tick some time in 1988-89. I was 12 and I had a bulleyes rash. My family and I never even heard of the disease back then and we are from CA so when I finally did hear about it years later I was only told it was an East coast only thing. I can't remember if I had symptoms other than the bullseye rash when I was bitten, but I did not have any kind of symptoms until 1998 which only lasted for a month after getting bitten by mosquitos and ticks. I was living in UT at the time and the doctors told me there is no way I would have Lymes and I believed them. Then 2006 I got into a car accident and started having MS symptoms: weakness on one side of the body, eye twitches, dizziness, headaches, whole body aches and then it was gone once a I became pregnant. Now after 20 years I have started to complete body joint pain 3months after my baby was born and dizziness, dry eyes, IBS and I started to hear about Lyme disease one day and I thought no there's no way, so I did my research on the internet and discovered it has in been CA for a long time. I have been tested for Lymes by ELISA, Lupus, RA, Mercury poisoning, osteoarthritis,MS, Ankolosing Spondilitis and it goes one all negative. Now I am going to an LLMD for treatment and testing. Apparently the Lyme was dormant in my system for a very long time.
ditto wonko. I had three ticks embedded in my scalp that resulted in lumps all over my head a week later, when the pediatrician removed the tick heads - yuck. I think I was 11, now I'm 33 and have a diagnosis of "probable Lyme" from a positive ELISA (many were negative before) and a CDC positive Igenex Western Blot for IgM (also negative three times before).
So - my vote is, yes, it can lay dormant. There is some research that shows that the spirochete causing syphilis can lay dormant, so the spirochete for Lyme should be able to do the same. Those tick bites are the only ones I recall.
Take care and know that hope is out there, especially with the LLMD.
Well, I took my daughter to a supposed Lyme Literate Doc who was a total a**!!!! He looked at her blood results, he listened to her for about 2 minutes, and then said "I don't think you have Lyme. Maybe a "summer virus" or "viral meningitis", She has been tested for Lyme over and over never getting any positive reads on it. This time when she tested she got 1 positive band, and he says...No.... I am thinking I may just make her go to an ER in Phila and hope they admit her until they find out what is wrong with her.
Did the dr test for coinfections? That can make things worse, and if your daughter was re-infected recently on top of an old infection, it could perhaps account for the depth of her illness now -- I've read that that is not unusual.
I ended up in the ER twice when first very ill, and they didn't get it either -- they aren't any better trained than other kinds of drs. It depends on how inquiring their minds are, because they have to educate themselves. Over the years I've found ER docs to be among the quickest studies, but Lyme is not something that would likely run across their radar screen: the effects of Lyme, yes, but not to the point of needing to see the bigger picture, perhaps. They will take care of immediate problems (like heart irregularities from undiagnosed Lyme in me), and then bundle you off to your 'regular' doctor for follow up care. Bada bing.
My best advice would be to find another LLMD. Check the ilads dot org website for someone in your area -- I know there are LLMDs around Philly, quite a few, actually.
You might consider a second opinion. It is also possible she does not have lyme. There are many conditions with similar symptoms. Has she been tested for all the other autoimmune diseases and had them ruled out?
Oh boy...yes, take her to another Dr. Yes, I also believe it can lay dorman. I am reading Cure Unknow by Pamela Weintraub..Wonko suggested this book, excellent. It can lay dormant, go in remission. There has been cases where people almost died, gave them full strength of antibiotics for long periods of time, got better over night, unbelievable!!! Went off the meds, got sick again. Big controversy regarding this lyme stuff!! Can't believe so many people have it. I was tested positive ELISA, Western Blot a couple of years ago, went on Doxy for about a month. I got much better, got a new rash a year later, took pics also, since I couldn't get in to the Doc. Went to a rhemi Dr. for my neck pain...so many symptoms come and go. I am currently sick with flu-like symptoms, very scary situation. I never went to a LLMD, just my reg Dr., he thinks I have chronic lyme right now. I was recently tested again, everything is negative.
Good luck, find another Dr.
I must thank all who have responded and recommended we go through ILADS. We saw a wonderful Doc recommended by ILADS, and after reviewing Kris's history, checking her from head to toe-guess what? He is 98% sure she has LYME!! Ya think?? Anyway, the reason she got so ill recently is because she started on Doxy and it caused a Herxheimer Reaction. She also has a Candida at this time. He drew the blood, and overnighted it to Iogenics for diagnosis. She has to go back to him on the 18th for the results and to find out what her next steps are. He explained that back in the early '90s it was all so new that even at that time Iogenics (the Lyme Lab) was fairly new. We walked out of there feeling 20 yrs lighter.
Lymes will be everywhere birds migrate. Thank our government for their biological lab near Block Island off the coast of Lyme Conn. Go figure. Early treatment fo lymes sometimes doesn't get rid of Babesia.
Yes it appears Lyme bacteria can lay semi dormant for years.
I came down with something that crossed the blood brain barrier in 1992-93. Symptoms were vertigo, fatigue, memory etc. I was doing rotation in med school. Lyme was actually on my DDx. I was worked up by neuro but they found nothing. They did find a plaque via MRI but could only say it was inflammatory as it did respond to steroids.
It took me about a year to feel normal again and it seemed that I did get more colds per year. It was assumed it was mono but never really knew.
During normal colds I would get a mental fatigue above and beyond normal flue cold fatigue. Also a spot on my forehead would open up during heavy fatigue. Most Drs. did not believe a dormant virus could be responsible, the symptoms were transient and not life threatening so they were ignored.
Then in 2006 I was exposed to around 6 weeks of Stachybotris molds and ended up with a pulmonary infection and new asthma. During this neurological symptoms (numb fingers, toes, headaches, brain fog) were unbearable. Crp, cytokine levels high but non specific. Blood clotted and emboli formed, near death. 2 years of sickness and was finally Dx with chronic lyme + CMV.
Of the two microbes the CMV or possibly other herpes virus were the most debilitating in terms of neurological effects. Antivirals helped more than antibiotics. The theory is the lyme weakens the immune system to the point where it can no longer keep herpes virus in check.
I also got shingles at age 42.
Keep in mind I was a singles league tennis player at the HS to College level. No matter how good I kept in shape I was sick.
Interesting while taking the antivirals I lost all the weight I had gained.
Once activated some people with lyme will gain a tremendous amount of weight, the mechanism is unclear.
This disease should be taught in medical schools by someone that really understands this bug. None of the Drs. in my medical building have this type of understanding. They understand its controversial but not much beyond that.
It is inflammatory but has a microbe at its center. There may be a defect in the host immune system that allows it to wax and wane as it seems to do. During these endless bouts of inflammation a little bit of damage is done and the host slowly spirals downward.
Most of the symptoms are none specific and with our current state of medicine it will easily be mis diagnosed. Treating the symptoms will appear to help but its just a piece of gum in a cracked dam ready to break.
This disease is far worse than I had expected. It steals a life in plain site and gets away with it.
I LIVE IN THE LA AREA WHERE MOST DOCTORS DON'T BELIEVE THAT YOU CAN GET LYME. AFTER ALMOST A YEAR I WAS DIAGNOSED WITH LYME AND WAS GIVEN A REFERRAL TO A LYME SPECIALIST. HE PUT ME ON THE USUAL ANTIBIOTICS AND ALSO SUGGESTED USING A HYPERBARIC CHAMBER WHICH HELPED ME A LOT. HOWEVER,
IT WAS VERY EXPENSIVE, SO I STOPPED AFTER 5, WHICH IS NOT RECOMMENDED. (RESEARCH SHOWS THAT 10-15 SESSIONS WORKS)
IT IS NOW A FEW MONTHS SINCE I HAVE USED THE CHAMBER AND SEVERAL OF THE SYMPTOMS HAVE REAPPEARED EVEN THOUGH I AM STILL ON THE ANTIBIOTICS.
IF YOU CAN FIND ONE, I HIGHLY RECOMMEND IT; HOWEVER, IT SHOULD BE A FULL BODY CHAMBER.
BEST OF LUCK AND HEALTH.
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