My 9 yr old son has lyme :(

Hi all,

Its been a long time since I last wrote. Life has been busy and I needed some time off from focusing on this illness.

As a recap, I was infected with Lyme in March of 2011. Diagnosed in August 2011 and treated w/ abx until this past February or so. During that time, my stepfather had a severe stroke and so my time had been focused on that for quite a while (he went home in May, had a mini-stroke and seizure on his 6 mo stroke anniversary, came back home and is slowly recovering; he is now able to walk with minimal assistance yet still has no use of his left arm). I was feeling pretty well for much of the summer but the leg aches and such have been slowly returning (I think it might be bartonella bc I have the burning skin, tender feet, and I had the track mark type rash early on in my illness).

In May 2012, at my stepfather's homecoming celebration, my son picked up a tick. He went for a walk in the woods with a few other kids and was out maybe a half hour or so. When he returned, being the paranoid-of-ticks mom that I am now, I checked him immediately and one had already attached to his back! We guesstimate a max time of 20 minutes or so of attachment (I removed it pretty easily with tweezers). I called the pedi right away and asked for prophylactic treatment which she denied.

I had the tick tested and it was positive for Borrellia. Prior to the results coming in, he had stool changes and a low grade temp in the 99s. These were also my first symptoms. I called his dr. once I had the results and she saw us. She was not concerned bc of the very short attachment time. I basically pleaded with her, told her my story, and my concerns. She agreed to 10 days of doxy which I knew wouldn't be enough if he had it but also knew it wouldn't be good to give to him longer if he didn't have it.

So we took the meds and time passed. He had the occasional complaint, like blurry vision, double vision, leg and bone pains, and later--involuntary movement of his foot. He had a spacing out episode as well. All of these things came and went quickly and were very spaced out. Had I not gone through this myself, I probably wouldn't have even noticed. He wasn't sick-sick.

At one point, he had two canker sores in his mouth with red dots. I called the pedi and asked about it during which time I also mentioned the prior neurologic symptoms. They wanted to see him bc of the lyme-like symptoms but when we saw them the say "nothing" , not even in his mouth (which I didn't understand bc I could see yellowing in his mouth and such). While there, I begged them to authorize a blood test through Igenex which they granted though again they thought it very unlikely.

I did some research on LLMD's for peds in our area and spoke to a wonderful naturopath. I explained his random symptoms in a child that is otherwise very healthy and she thought it sounded like a possible lyme case. (During our long wait for the results, he had ringing in his ears that came and went.)

We finally saw her, three hours from us, yesterday (yes, a Saturday--how kind is that?) She was so kind and wonderful. She had his results. Not a CDC positive, but a positive via Igenex standards for an active infection via western blot. With his symptoms and the positive, she believes he has it. She also believes he has yeast from the prior abx.

So the plan is to heal his gut first with reducing sugars, reducing chemicals, and increasing probiotics. Then we are adding antimicrobial supplements/herbs and looking for a herx. Once he reaches a herx (we increase the number of drops each day until he has one), we stay at that amount until it stops and then increase again. She gave me stuff to ease the herx and increase immune function. Later, we can try abx but I think she wants to try to keep his body healthy and knock down the bug before getting so aggressive.

I don't know if it will work but I can tell you that I was on abx for something like 9 months and I believe I still have either lyme or a co-infection. I'm still dealing with the yeast from it.

Please pray for my baby. I want him to heal quickly--which is why I couldn't let this go and wait for the symptoms to be "obvious"!

I can only imagine how frustrating and upsetting this all is/has been for you! If it makes you feel any better, it sounds to me like your son is finally in good hands. It's always so much harder to see a child get sick. 

While this doctor is treating your son, are you having her take a look at your case as well? If you're still having symptoms and the abx approach isn't working for you, there's no reason you shouldn't be treating yourself as well!

I'll be praying for you and your son - be well!

Love and prayers to your little guy, Its rough enough on the adults .

I would second - or third or fourth - the suggestion to have this doc treat you as well!! It would encourage your son that you are trusting this doc as well!

I'm so glad that you were able to find this doc for your son and that she's got him started quickly on the right path!! Kudo's to you for being the ever-watchful Mom!!! You saved your son from possible issues down the line!

Healing thoughts and prayers to you and your son!

Yes, it's terribly unfortunate that the children that are infected will suffer. That's what happened to me, I was the only one in my family that was infected and having enough symptoms to cause issues, so no doc was willing to look too far.

It will be sooo good when we finally get the doc's all on board just with learning the truth about these infections! The argument about how to cure them can rage on if we can only get these kids and adults diagnosed!

I'm sooo glad that you knew what to look for and how the testing is messed up and how to find good treatment for your son!!

Don't forget to schedule an appt for you as well!!

Hi Worried, and LymeMomma,I'm just writing in because my son (8) also has Lyme. I'm learning he may have Bartonella too.

Worried- I am taking a page from your book - I've been trying to get results from the wrong doctors and I need to move on to the right thing.

LymeMomma - I found this thread via your name while looking up rage. I'd like to talk with you please. I'll send you an e-mail.

The whole thing with people not believing is especially damaging because not only do we waste time not getting treatment, but our kids get nasty labels which hurt their souls as well. Not to mention the aura of "crazy mom" which is exhausting to face.

If our kids had been in car accidents people would be so supportive. Thank you everyone on this site for stepping in where closer people havn't.

Checking in so I can get notices of new postings. My son is getting worse and I have 2 more appts. next week. I count on all you wonderful people for sanity.

I'm sifting through all the info I've been given/led to so I can really present a strong case to the eye doc who is at least aware that Lyme can mess with the eyes. 

 I just got my son's report card and he had a drastic decline in his reading comprehension. It has rattled my cage a lot. He tested VERY high at the begining of the year. Not so much now.

 His writing has gone down hill too. His math is still very strong. It fits but try to convince someone outside this Lyme community. AAAAACK!

Then, there's moods and random confusion, the pains, and I really think his arms are getting skinnier. Doctors don't seem to be very good for his well being.

I'm ok with us all being crazy together Traveler. I may need to box with the big Ash tree outside a while soon. It's very accomodating and I know it has worked for at least one pretty wonderful person. ;)

Thanks for the input everyone.

Traveler, thank you once again for your guidance. That site is going to take my medical dictionaries to translate, but that's ok.

I did follow a link within the link - a Lyme knowledge quiz and knew I had better expect a "no chronic Lyme" bias after the first couple q's. However, I got all the answers right as far as predicting what they would be claiming. Hmm.

Opthamologist on Wed. I'm edgy.

worriedinvt,

I am so sorry to hear that both you and your son are having to deal with this illness. Your son is so fortunate to have you as his advocate! Please see to it that you receive appropriate treatment as well. Although your son has symptoms and has been sick for about a year, he is still in a good position to expect a good outcome.

My wife extracted an engorged tick from our daughter's armpit about a month before her 9th birthday. Unfortunately we didn't know anything about LD at the time. She became very ill. She went about 4 years before she was properly diagnosed and then treated. Her treatment seemed to take her to a place of remission, but then she relapsed a few months later. We switched treatment approaches and she has been well ever since.

Heather has just turned 18 and will be going to college next year on a swimming scholarship. I am telling you this so that you have hope.

You need to know that the healing process can take a long time. Please be patient. The journey is a learning experience for everyone. Most people discover that adjustments will need to be made in the treatment and supporting lifestyle. It comes with the territory, and do not be disillusioned when/if progress is nonexistent or slow at times. Just keep an open mind and learn as much as you can about treatment approaches as you can. That info may be valuable to you later on!

I wish you and your son the best!

Don

California Cat,

Heather was a psychologically well adjusted and physically healthy child prior to her illness. Both aspects changed as a manifestation of the illness. She did not have the bullseye rash, and there was no obvious beginning point to her illness. I am reconstructing the course of symptomology from a retrospective glimpse back in time.

The first symptom was of a psychological nature during the early months. She started to experience anxiety and stomach pain at times of stress. These moments appeared at times such as the night before a school exam or in the hours before a swim meet. She usually vomited right before her first race.

Another of the early symptoms was that her ear lobes turned bright red and permanently stayed that color until she was cured. They felt "hot" to Heather.

After about a year, the anxieties became a lot worse. Her pediatrician suggested psychiatric help, as well as her swim coach. She also started to experience a generalized muscle soreness all over her body, and her joints started to ache. Her doctor said that she was just experiencing "growing pains."

The last couple of months before she totally crashed brought a rapid escalation of symptoms. She was very white and pale looking, and she fainted at a swim meet, collapsing at the feet of her coach, and was unconscious for a minute or two. This really in-shape 13 year old swimmer found it difficult to even be able to swim a 50 meter sprint by the time right before she totally crashed.

When she crashed she was totally debilitated both physically and mentally. We had a series of appointments with her pediatrician during which we pleaded for answers. He tested for EBV, and she had a very high titer, which meant that she had a bad case of Mononucleosis. He said that Heather was just very depressed over her circumstances, and that she needed several months of bed rest and a psychiatrist.

We got a second opinion with another pediatrician and got the same story. The useless Elisa Test was performed, but was negative.

I had done some research by this point, and i was positive that it was LD and coinfections. We eventually got hooked up with an LLMD. Her symptoms escalated to the point where she could not walk, had excruciating pain throughout her body, sound sensitivity, severe cognitive issues, spinal pain, bad headaches, right arm that was hypersensitive and extremely weak, severe gall bladder pain, stomach pain, extreme fatigue, dizziness, cracked and bleeding skin on the soles of her feet, deleriums and drenching sweats at night, and I could go on and on!

Dr. J's testing revealed that she had Borrelia, Babesia, Bartonella, Ehrlichia, Mycoplasma, HHV6, and West Nile Virus. She also had a very bad case of parasites that we had herbally treated before we had taken her to Dr. J's clinic.

We had gone through 2 IDSA MD's and 2 ILADS LLMD's before we found the treatment approach that totally worked for her. The experience journey is unique to each person. Heather required an approach that was completely different than conventional and even most alternative approaches.

I hope that this info helps you. I know that you are in the very early stages of the journey. I remember the issues that I was preoccupied with at a similar point in the journey, and what my mental perspective/knowledge base was at that time. Your perspective will change with time, circumstances, ongoing research, and reflection.

Don

Thank-you both. Yesterday the opthamologist confirmed what John told him a month ago - that he has lost the lower vision in his right eye.

Tomorrow he gets an MRI. They are at least taking this pretty seriously. Or, the quick appointment makes it seem that way.

However, no treatment suggested until the MRI has been seen. It is on my record that I believe it is Lyme despite the negative tests. The Opth. said it didn't look like Lyme, that Lyme has a distinctive look in the eye. Interesting. He also said he didn't see inflamation.

The basic problem I face with going outside insurance is that including credit line and income I can't cover a week at Hansa, or more than a handful of visits, tests and prescriptions locally. period.

I will apply for the help that's available and that may be a boost.  Because, starting treatment then stopping isn't ideal either. But, something is better than nothing, yes?

Waiting has been a constant emotional strain because I want to do what's best for my son. Still, eating has always been on the good list and sometimes it's that tight - food or something else. I lean towards food in that choice. This isn't 'Oh, shoot! No Bahamas!'.

There's a tiny chance the measurable eye test results will lead to positive steps on the hospital's part. Meanwhile I'll be booking that llmd too. Vision loss is pretty in-my-face hard to wait about.

Heather's Dad, the info you shared is very helpful. Any more symptoms you add I will keep my eyes open for. The value of awareness is unmeasurable. I can be pretty patient with the mental weirdnesses when I get where they come from.

Kiddo chooses this icon. !

Post Edited (California Cat) : 6/20/2013 2:20:25 PM (GMT-6)

Cal cat, Tell your 'kiddo' that we like that icon too!!

As for trying to afford all of this, try these links. I'm sure there will be a lot of repeats, but in order to be sure you have a chance to see all that I have, I included all of them:

m.facebook.com/story.php?story_fbid=496776497026802&id=327348653971656&__user=9415916

lymedisease.org/news/touchedbylyme/needy-meds.html

medicationcoupons.com/

www.internetdrugcoupons.com/

I hope that these can be of some help for you!! If there's more we can help you find, please don't hesitate to let us know!! Help with these infections comes in all shapes and sizes!! LOL!