Question/advice

Hello! I just found this forum in hope of some support for my 14 year old daughter. I am trying to educate myself as much as possible, this is all new to me and I was reaching out for a little advice for those with more knowledge and experience. My 14 year old daughter has had no previous medical issues, very healthy and has only been sick once in the past couple of years and that was strep throat in December. In January she started getting headaches. They would occur daily. I get migraines and I was wondering if she was starting to get them as well. The headaches would occur almost daily. In February she started having some weird neurological issues. Stuttering speech, not finding her words, forgot how to play her trumpet, feeling "off", feeling out of sorts and just had a weird feeling all over. We decided to take her into a neurologist. They did an EEG and MRI-both normal. They suggested she was getting migraines and migraine auras and sent us away with a headache log. Fast forward another week after that and suddenly one day she texted me on the way home saying her legs and arms felt heavy and ALL her joints hurt her so bad. Her wrists, knees, elbows, and ankles the most. That was about 4 weeks ago. Since then we have seen her pediatrician, a naturopath, a rheumatolgist, an emergency room doctor. We have had her blood drawn 5 times by different doctors. They tested her cbc, metabolic panel, ebv, ana titer, rheumatoid factor...the list goes on and on, nothing came back positive EXCEPT she showed positive for IGG 41 and 58 and IGM 23 on western blot. In the meantime her joint pain and leg pain has gotten so bad she is now in a wheelchair. She cannot support weight on her legs, her knees give out. She is in so much pain it is heartbreaking. I have tried many different things to provide her with pain relief and nothing seems to help. So the issue is two of her doctors have told me she does not have lyme, her test is cdc negative stop chasing that diagnosis and they say she has fibromylgia. Her other two doctors absolutely think it's lyme (they added in taking antibiotics for strep in dec could've effected her test results). We are so confused and decided to start treating her for lyme. She started antibiotics 4 days ago. We have seen no change in symptoms yet. We have her on some supplements from the naturopath as well. I am a nutritionist so in general she has eaten clean and healthy for years, especially compared to many of her peers. I am just doubting my decision to treat her for lyme but it seems so crazy and sudden for it to be something like fibro. I have doctors telling me this isn't how lyme presents and her joints would be swollen. Her SED rate was low so rheumatologist dismissed lyme based on that alone. We live in CT so it wouldn't be too far fetched. We do tick check our kids regularly but those buggers are small and I suppose we could have missed it. I am reaching out for any support or advice on the matter. I have been reading up on these western blot bands and trying to educate myself. It is so hard seeing her in so much pain and not being able to help her. I know this was a long post and I am sorry! Anyone out there with lyme experience such leg pains? Also I keep reading about this HERX with lyme. She isn't herxing and is doing fine on the antibiotics, they aren't even bothering her stomach so that has me second guessing if it really is lyme. Everyone keeps telling me on the antibiotics she will feel worse before feeling better and so far there has been no change. I find it infuriating that these doctors don't seem to blink that my healthy 14 year old has gone from dancing and playing sports to being wheelchair bound in a matter of weeks. I am so frightened over what is causing it and feeling helpless and worried she won't walk again. It is so terrible to watch your child go through this.

She is on doxy 100 mg twice a day.

No she is having no stomach upset or diarrhea. In general before this she has pretty good gut health. She doesn't tend to get stomach bugs or gi upsets at all even when her classmates or siblings do. I give her a good probiotic and some kefir midday when she isn't taking the antibiotics (she takes them early morning and at night).

p.s. There's also the Horowitz Lyme-MSIDS Questionnaire to consider:

http://www.cangetbetter.com/symptom-list

MSIDS = Multiple Systemic Infectious Diseases Syndrome

Doxycycline would usually cause a Herxheimer reaction within a few days. Nothing after four days is a bit unusual.

Leg pain could have other causes, such as fibromyalgia, lupus, diabetes, adrenal insufficiency, or thyroid problems.

Hi, Carolyn11,

Lots to consider here, but first let me say I'm so sorry for what you and your child are going through. How terrible to see your child suffer and to find out how immensely unhelpful conventional medicine can be if you don't present with an illness they're familiar with. Honestly I'm very happy for you that you found doctors who take Lyme seriously so quickly!

Please don't fixate on the tests. Many believe that Lyme (and co-infections ... there basically always are co-infections that carry many of the same symptoms) is a clinical diagnosis, so tests done by the right labs can be useful but symptoms matter more. Has your child had other tests run, like CD57 and c4a, and tests for the incredibly common co-infections (bartonella, babesia, mycoplasma, Epstein-Barr virus, rickettsia, etc.)? Keep in mind that there are more than 30 species of borrelia that can cause disease in humans, and most Lyme tests only look for borrelia bergdorferi. If a healthy 14yo person develops sudden neurological issues and severe joint pain, then that is absolutely textbook Lyme. The fact that it followed another type of infection that weakened her system also makes sense, because Lyme is opportunistic, so sometimes lurks and takes over when the system is weakened.

Mold exposure can cause many of the symptoms you describe as well. Is there any chance that your child was exposed to mold recently? The best book on this that I have seen is Toxic by Neil Nathan, which also addresses the treatment of bartonella (tick-borne and common) and forms of environmental illness, if you think that might apply.

I have not taken doxy, but it's my understanding that a herx does not necessarily occur right away, sometimes taking a week or more until her system is overloaded enough to have herx symptoms. Additionally, many pharmaceutical antibiotics are bacteriostatic (not bacteriocidal) so people sometimes feel better on them but feel bad again immediately upon stopping that form of treatment. Keep in mind that people take a wide variety of pharmaceutical antibiotics in various intentional combinations, so lots of folks on this forum might have ideas for you about that regimen. I also encourage you to explore all the other treatment options as well (lots of people never take pharmaceuticals for this stuff, and others don't find them effective). From what I know, pharmaceutical antibiotics work best the sooner you take them, so it's good that your child has only been sick a short time. For other options, off the top of my head, there's Ampcoil (someone in Hartford can do a demo for you), various herbal therapy protocols (Buhner, Cowden, Vital Plan, etc.), homeopathy, traditional or classical Chinese medicine, plasmapheresis, bio-photon therapy, stem cell therapy, IVIG, ozone, UV blood irradiation, and so many other things. Even folks who go a very pharmceutical route tend to use a lot of natural therapies in conjunction, like binders (e.g. charcoal and bentonite clay), dietary changes, gut support, lots of therapies for detox (e.g. infrared sauna, Epsom salt baths), acupuncture, nutritional supplements, and curcurmin (from turmeric) and other supportive herbs.

One of my favorite resources for this stuff is rawlsmd.com. This doctor explains things well, suggests very reasonable treatments, has an open mind with solid science, and has tons of information available on his website and free webinars.

I know this must be very overwhelming. Keep reaching out! This forum contains people with a variety of approaches and situations, so most questions get at least some response. Check the archives, too, by using the search function when questions arise.

Hugs to you!

Herxing is not experienced by everyone while treating with antibiotics. I did not herx on antibiotics. I generally improved when taking certain ones.

I recommend getting her to an LLMD. I think her symptoms are highly indicative of tick borne infection, and she would be best served by an expert in the field.

I would also look into PANS / PANDAS. Google PANDAS and strep. You may also find benefit in seeking a doctor willing to explore the PANDAS possibilty. Unfortunately, some doctors still don't "believe" in PANS / PANDAS even though the scientific evidence is undeniable and mounting. Funny how the leading treatment for PANS / PANDAS right now is antibiotics...

I have a bad history with strep and believe it played a role in the mysterious health degradation I was facing a few years ago.

Please let me know if you have any questions.

If the Pediatric Dr J has retired - there is a clinic in Washington DC that did have a Pediatric lyme doc.
Not sure if that’s still the case.

Send me an email and I’ll give you the info on both docs.

You daughter may need IV abx and the clinic in DC does that (if necessary)

Because of the seriousness of and how much the disease has advanced I highly recommend she see a very experienced lyme doc for an evaluation and subsequent treatment.