Lyme Disease in 12 yr old daughter.

[JulieKatie]

My 12 yr old daughter has chronic lyme disease. She is starting her third month of antibiotic therapy seeing a LLMD. She has not make many gains, but did take her out of school for a couple months to rest. She has been sick for 3 + years. Started out with knee pain, terrible insomnia, fatigue, headaches. She stopped doing gymnastics first, and I think it had a lot to do with the already starting joint pain. She did dance for one season…missing A LOT of the classes, and therefore never really feeling like a part of the group. During this time the insomnia is getting worse, and a deep depression in settling in. Hard to figure out what caused what at the time. Looking back is so much clearer. 5th grade was hard…very stressful teacher who really wasn’t nice to her…spiking symptoms of fatigue, chronic joint pain…swelling in the knees. Her insomnia worsened more and more. Depression spiked. Missed a TON of school with infections/fevers. Fevers became pretty chronic. Summer was mildly improved, so you think it is going to get better. By this time, our dr (peds) was sure it wasn’t lyme disease. Negative titer…negative for rheumatoid arthritis/lupus,etc. 6th grade starts…symptoms spike in September. Misses a record number of days this year. Lots of sinus infections…chronic fevers even when sinuses are ok. Her temps spiked so much so often that even the school nurse says “she;’s doing that fever thing again.” throughout the year. There are days when she looks like death warmed over…i know something is wrong, but what. Peds dr insists it isn’t lyme and that it is fibromyalgia. Go to a pediatric rheumatologist who actually “rolls her eyes” (literally rolls them!) when I say lyme disease. I am a nurse but when your trusted peds doc tells you it isn’t lyme for 2 years you believe her. I regret it, and have “divorced” myself of her…the medical community wrongs soooooo many patients! I say this as an RN, so that really says something. It is bad enough when it is adult patients, but when it is kids, shame on them. So summer comes…the puppy we bought for her dies in July of heart failure, so depression worsens again. Still no sleep and always hurting…not even like the little girl we used to have. Friendships are severed from the lack of being around and always being sick. Girls are so mean at this age. During the spring of 6th grade best friend moves on abruptly without any explanation. Any other time, it would have been just life, but when you’ve lost your life and now your best friend leaves you, too, it really hurts deep. So 7th grade starts (this year 2011) and it is worse than ever. She cannot even stay awake through class. Her teachers know something is wrong, but still not sure what. She looks like she is dying, but still no idea why. I talk with our vet…yes our vet…just a casual conversation. She said, “that sounds like lyme disease” and I say, but my peds doc says no that chronic doesn’t exist and that she doesn’t have it. She says that she treats dogs almost daily so how could anyone even think that lyme disease isn’t in our state? So, I email a colleague of mine whose daughter has lyme and explain the symptoms…severe body pain, headaches, depression, insomnia, foggy thinking, etc. and she is like 100 percent the same. I make a dr appt for visiting the LLMD and from there we finally get somewhere. Now it has been over 3 years (at least) since symptoms started. It has been 2+ months now on antibiotics, and lots of pain and suffering later and still waiting for results. F rom what i hear it takes 6 months or more to really start feeling better. I also know that my colleague’s daughter is having problems with her lyme again, and the realization that this will be managed but not “cured” is becoming clearer and clearer all the time. Does anyone have any wisdom for me? I have my daughter back at school doing 1/2 days…no stamina for all day. Imagine this may stay this way the rest of the school year…but we will see. Thanks for listening and any wisdom or tips from anyone will be greatly appreciated! JulieKatie

[Maz]

@JulieKatie wrote:

My 12 yr old daughter has chronic lyme disease.

Now it has been over 3 years (at least) since symptoms started. It has been 2+ months now on antibiotics, and lots of pain and suffering later and still waiting for results. F rom what i hear it takes 6 months or more to really start feeling better. I also know that my colleague’s daughter is having problems with her lyme again, and the realization that this will be managed but not “cured” is becoming clearer and clearer all the time. Does anyone have any wisdom for me? I have my daughter back at school doing 1/2 days…no stamina for all day. Imagine this may stay this way the rest of the school year…but we will see. Thanks for listening and any wisdom or tips from anyone will be greatly appreciated! JulieKatie

Hi Julie,

It is very nice to meet you, and, as we always say around here…just sorry you had to seek us out.

Sadly, chronic Lyme is largely dismissed by conventional medicine and, even worse, they also ignore that ticks can pass a multitude of other coinfections, like babesiosis, which can also produce spiking fevers. Ticks are nature’s dirty needles, as the saying goes. In fact, many LLMDs aren’t referring to chronic Lyme as “chronic Lyme” anymore, preferring the term MCIDs, meaning “Mixed Chronic Infectious Diseases syndrome.” Borreliosis seems to be the bug that takes out immune function right from the get-go, drilling right into the lymphatic system in the early days of infection…and, once, immune function is hijacked, all hell breaks loose and Lyme’s hitch-hiking friends, commonly babsiosis, bartonellosis, erhlichiosis, anaplasmosis, various strains of mycoplasma, viruses, etc all have a field day. Some pathogens that have remained latent within the body (e.g. chicken pox) can be re-activated and manifest as shingles. Likewise, any other pathogens with which we’ve been living quite synergistically in the past, like myco and strep, can also become a problem.

One of the major goals of Lyme treatments is to not only target suspected infections, but to also do what can be done to detoxify the body and to strengthen immune function. Your daughter has been sick for 3 years and some say it can take as long to heal chronic Lyme as one has had it…but the good news is that your daughter has youth on her side and, with the right LLMD providing a measured approach to her treatment, she should fare well in time. As your colleague has discovered with her daughter, relapse is common, and experienced LLMDs have discovered through their clinical experience that sometimes relapse will occur several times before a sustained remission is reached. This is why working on detoxing and immune function can be pivotal to successfully gaining the upper hand in treating this serious set of infections. One very experienced LLMD in NYC commented that we keep a piece of every organism we’ve ever encountered within our bodies throughout our lifetimes. This makes good sense, because this is how our body learns to recognize and defend itself against future run-ins with the same pathogens. However, what this means is that we are never likely to be completely rid of tickborne infections and the best we can expect is to get the pathogen load down, slowly over time, to eventually re-gain the upper hand.

Brown’s description of how this works with regard to mycoplasma in rheumatics is pretty enlightening, if you have a chance to read, Henry Scammell’s, “The New Arthritis Breakthrough,” and the info under the Education tab on the main site. Brown said that it wasn’t the organism itself that caused the problems, but the toxins (antigens) they release to which rheumatics become hypersensitized. He dubbed this, “bacterial hypersensitivity,” or “bacterial allergy.” Also, certain genetic haplotypes (particularly HLA DR4 in RA or HLA B27 in spondylarthritides, for example), may worsen matters by tripping off molecular mimickry…that is where proteins on bugs are confused with our own cell’s proteins and leading to “self attack.” As rheumatic tissues tend to be so sensitive to bacterial toxins, released both during flares and herxes, the goal of Brown was to reduce the pathogen load slowly over time, to prevent too much die-off and, thus, too much inflammation, which prevents abx from reaching their targets, deep within joints and other surrounding tissues. In this way, the immune system can be gradually “re-trained” to slow down it’s acute reaction to bacterial antigens. The real challenge with borreliosis is attempting to strike a balance between sufficient killing power and preventing too much hypersensitivity.

Borreliosis certainly is a tricky organism – more complex genetically than syphilis – that has evolved complex survival strategies to both cloak itself from immune detection (through various pleomorphisms and changing up outer surface proteins very quickly so that the immune system can’t find it) and to avoid abx attack (changing very quickly to dormant cystic form that has reduced outer surface proteins that the immune system has trouble detecting and having a hard outer coat that abx can’t penetrate). Then there are all the strains of borreliosis here in the US – over 100 of the blighters – some more virulent than others and their subtle differences perhaps explaining why some people present with one type of rheumatic disease over another, in addition to degree of severity. These are just some of the reasons why finding an experienced LLMD can be critical to the whole game of getting well again.

My daughter is also a recent nursing grad and she has shown me the literature she was taught on Lyme. She laughs at me when I can’t help myself from critiquing it!!! But, one good thing is how aware she has become of just how insidious Lyme and coinfections can be…after all, she’s seen it first hand. She was the one who saw my two bulls-eyes and saw me go downhill within weeks, progressing to all-out RA within 2 months, and my GP refusing to treat me as my ELISAs kept returning equivocal – he didn’t bother with the second-tier western blot testing as a result. 🙄 A nice doc, but totally ignorant that bulls-eyes = Lyme, no matter what the standard tests say. My LLMD firmly believes that had this GP treated me early I may well have avoided my very severe, swift onset RA.

I was also in a lot of pain in my first few months of treatment, labs worsening with my herxing, too, but after this initial period, it was a gradual, stepped process, to wellness. I was pretty severe and reckon I probably had Lyme and coinfections for at least 8 or 9 years prior to diagnosis, so I don’t doubt that I may be chasing this for a while yet, possibly for life as I’m now 51.

It’s terrific that you’ve found your daughter an LLMD and she is now on treatment! Well done, Mom!!! Two months is still very early days, but you’ve found a great place for friendship and support as there are many Lymies here, some new to the game and others well on their way. Hope you feel welcome and at home here. 🙂

[JulieKatie]

Maz,

THANK YOU So much for your warm welcome with support and lots of wonderful info and encouragement. I am thrilled with being here on RBF. An old friend of mine from the late 1990’s recently told me about it on Facebook. So glad and thankful! She knew it would be great for support. She has RA and had been on the antibiotic protocol for several years. I will definitely be on here, probably daily to find support and answers. Thanks again SOOOOOO MUCH!! 🙂 Julie 😀

[Parisa]

Hi JulieKatie,

Welcome to RoadBack. I’m so sorry you had to search us out but you have come to a good place. It’s very hard as a parent to watch them go through something like this as we want only the best for them. 12 is definitely a difficult age for young girls. Add to that, the loss of her best friend and her inability to attend school full time and to dance and do gymnastics and that makes a recipe for unhappiness. Lymedisease.org has a teen only support group. Perhaps she might venture over there and find some young people who know how she feels: http://www.lymedisease.org/resources/children_support.html

Lymenet http://www.Lymenet.com is a another great resource as you will find a larger pool of people there who have children going through treatment.

Cure Unknown by Pamela Weintraub is a book that discusses the politics and treatment of Lyme disease. A definite must for understanding the disease and why it is so hard to get adequate diagnosis and treatment.

As Maz pointed out, 2+ month is still early days for Lyme treatment. The good news is that you have found an LLMD and have started treatment so you are on your way even if you haven’t crossed the finish line yet. Make sure your LLMD is up on his co-infections as treating for them can make a big diference in recovery. One point in your daughter’s favor is that she is young and that brings a certain resilience that older people lack.

[Maz]

Julie, it’s a real pleasure and you’re always welcome here. 🙂 It’s so rough for parents of kids who are struggling with rheumatic diseases and choosing antibiotic therapy. There are no studies yet for pediatric cases and it must feel like you’re swimming against quite a tide of medical opinion.

There are a few parents here posting for their children, so hopefully, if you can manage to check in on a regular basis, you’ll bump into one another for more support. There are issues you parent advocates must deal with (like the emotional ones you described like losing friends) that we adult rheumatics mostly don’t have to face to the same painful extent and it must feel quite lonely at times and worrying. We’ll do what we can, though, to provide a friendly ear and share our patient experiences, so you won’t feel quite so alone in all this. One thing that always seem to shine brightly for kids with rheumatic disease is that once they have turned things around, they are stronger and more grounded “than the average bear” in many, many ways, with a very mature and clear outlook on life – they don’t sweat the small stuff. Not long ago, we heard the remission story of one JIA patient who was just climbing Mt. Kilimanjaro!!

Hang in there, Mom, and please don’t miss Parisa’s post above this, as mine crossed in the post with hers.

[marypart]

JulieKatie,

I’m going to Private Message you some comments that I don’t want to post. My son was diagnosed at age 19 and he, too, has arthritis and it has been life-changing to put it mildly.

He’s doing very well now, although I think he will always have some arthritis. I have four siblings with arthritis and we all grew up in Lyme country (Connecticut). Who knows? Sometimes I think they all have Lyme.

My daughter, age 22, was bitten last summer and was treated immediately and aggressively with high doses of doxycyline for 3 months followed by antibiotic combos by a Lyme doctor near Boston. Fortunately her arthritis seems to be going away completely.

Believe me, things will get better. My son had a PICC line and was on daily IVs for four months, sometimes twice a day. He had body rashes and bright red reactions to some of the meds. It was a long haul and financially grueling, but things are better now. He’s in college near home full time… so he can easily come home for the weekends if he wants. And his doctor is ten minutes from the campus. He’s doing well.

Just wanted to give you some hope. I felt so guilty that I didn’t get him diagnosed earlier. Dr. J in DC (where we live) thought he probably had had it for many years. Believe me, your daughter will get better. You don’t say what state you are in, but find the best LLMD you can.

Mary

[Parisa]

Mary,

I see in your signature line that your family also suffers from Crohn’s disease. Have you looked into LDN (low dose naltrexone)? I know a doctor who prescribes it as a front line treatment to his patients that have autoimmune conditions and has had good success with Crohn’s disease. Perhaps, if your son is able to heal his gut his lingering arthritis will resolve.

[marypart]

Parisa,

I don’t want to hijack this thread… but his doctor assumes a subclinical Crohn’s although nothing shows up on the GI tests.

Strangely, he has NO GI symptoms. Nothing… even after 18 months of oral abx. Lots of probiotics, Nystatin and Diflucan and other herbals.

So, so far so good. I’m fighting Lyme myself (pos erlichia, clinical dx of Lyme and Bartonella) and the bartonella is giving me digestive issues… so maybe I’m the one who is headed for Crohn’s. I’ve mentioned LDN to my son’s doctor (and to my siblings as well).

My son did 12 weeks of Enbrel this summer while remaining on the antibiotics… no change. We are considering Simponi. Right now his doctor has him on Valtrex and is going to change to Valcyte– Lyme treatment really brought out his HSV-1 with cold sores every couple of days. So for now we are hitting the viruses hard.

His arthritis is managed quite well now. The thing is, he was a very high-level athlete, and it is hard to watch that go, but really, he is doing very well.

Thanks for the concern.

[Trudi]

@Maz wrote:

One thing that always seem to shine brightly for kids with rheumatic disease is that once they have turned things around, they are stronger and more grounded “than the average bear” in many, many ways, with a very mature and clear outlook on life – they don’t sweat the small stuff. Not long ago, we heard the remission story of one JIA patient who was just climbing Mt. Kilimanjaro!!

Hang in there, Mom

Julie–
I couldn’t agree more with Maz’ comment. I’m so sorry to hear of your daughter’s suffering; you’ve gotten very good advice, so won’t repeat. What I will do is keep you both in my prayers!
Take care,
Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[jbower79]

Hi JulieKate,
Wow, your daughter’s experience sounds very similar to my own daughter although Abby is a few years older. She has had headaches for as long as she can remember so maybe things were bad long before we really knew. My daughter has been sick for nearly 3 years too — constipation, fatigue, headaches, low metabolism, hormone imbalance, thinning hair. You name a symptom she has it all. We got a diagnosis this summer of Scleroderma which brought us to the Roadback then quite quickly got on board with Lyme testing and she was clinically diagnosed with Lyme a month after the SD diagnosis. Her western blot was negative (even through Igenex) but her LLMD felt she definitely had lyme since she was positive for band 41 but indeterminant for 31 and 39. Abby is a senior in high school and knows very well the emotional hardship of missing a lot of school and losing friends. She danced ballet for 13 years and had to give it up. Now she is facing the possibility of not graduating on time and not going off to college like her classmates. I have to say it is killing me so I know exactly how you feel. I have to get it pulled together though because I have 2 daughters younger than Abby who need me too.
If you ever want to talk, just send me a PM. I would be happy to talk to you. You certainly have come to the right place for support. I have NEVER experienced such compassion, caring and concern as I have from all the wonderful people here at the Roadback.
Good luck with your daughter’s treatment!
Joyce

[A Friend]

Julie,
Am rushing this am, but thought of you about the issue of insomnia in your daughter. Hopefully, things are improving. But, either way, I’ve found that much of what is discussed in this paper to be very helpful, and some of it missing in those of us with chronic problems. Best of luck to you both on your wellness journey.
AF

[Impressive article on this problem. Worth a read. Also, reviews other problems related to it.]

http://www.hypoglycemia.asn.au/2011/the-biochemistry-of-insomnia/

The Biochemistry of Insomnia
in Other on November 15th, 2011
by Jurriaan Plesman BA (Psych), Post Grad Dip Clin Nutr

[Author]

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