Mom & 3 kids treating lyme for 2 years-Now what?

I'm not sure where to start & how much info you need but I need advice. My 3 children & I were diagnosed with Lyme 2 years ago & have been treated for many many co-infections along the way. We were diagnosed by a Chiropractor/Functional Medicine doctor after my being sick for about 10+ years and all 3 children being sick since birth. Our treatments started at 2-3 times per week & now are 1-3 week appointments for adjustments, cold laser and electrical frequency along with a huge expensive list of homeopathy & supplements to treat various infections, increase immune system & repair the gut. We have been on special diets, had our water & home inspected and done a treatment called ASA Balance several times, DNA testing, stool tests along with frequent blood test. On my own I've added essential oils. We purchased the electrical frequency machine about a year ago in order to do several treatments a week.

Our doctor doesn't want us using antibiotics because we were given so many over the years by general practitioners that our guts are a mess. At this time we are still not functioning well. We are extremely tired & in pain most of the time. Every visit to the doctor finds some new infection such as flu, mono, cmv, etc. & many of the co-infections associated with Lyme. My youngest daughter has started vision therapy due to vision issues we believe are caused by the lyme. We have never had an appointment where we are symptom free or not diagnosed with something, though the doctor does say the lyme is in remission at times. I now homeschool my children ages 10, 14, & 16 because they are unable to attend school. They are falling so far behind because they are to weak to function or have brain fog so bad they can't think or remember anything. My son has not responded well to any of the treatments and was the healthiest when we started. His health decreased with each treatment to the point he has been almost bed ridden for 10 out of the 12 months this year. The 2 months he was well he was treated for citrobactor fuendii. Within the week of treatment for the Citrobactor he become so well he appeared completely healed. He then got the flu and all symptoms returned & he has not recovered even though treatment continues. Now for my questions. Are we on the right track? Is this normal for the lyme healing process or do we need to find more or different help. I'm feeling very hopeless, overwhelmed & not knowing where to turn.

Doctors in my state do not believe Lyme exists and for some reason don't believe it can be gotten by anyone living in my state. I have met so many people around me who have traveled out of state to be diagnosed and who have been struggling to get help from doctors near us. We have spent so much money & we are having to dip into our retirement to pay these bills. My children & husband have had enough.

My husband doesn't want to spend anymore money feeling we are not any better than 2 years ago. My children have had enough of special diets, piles of pills 3 times a day & spending hours of each week driving & sitting at the doctor to not be feeling much better than 2 years ago.
My daughters & I do have times of feeling well for a day to a week but then we are down again & feeling extremely discouraged. There are so many things out there claiming to have the the right answer or treatment & I can't afford to experiment anymore. Several people I've met in my state are looking at traveling out of state to a lyme treatment center. Is that a better answer & how do I choose one? I've also met a woman who has traveled from state to state seeking help & is still sick.

Post Edited By Moderator (Girlie) : 12/23/2016 3:19:12 PM (GMT-7)

So, are you seeing a Lyme Literate Dr.? (Is the chiro/functional medicine Dr. lyme literate)
You asked if you are on the right track. It doesn't seem like it to me.
Is the Dr. changing up the protocol when there isn't improvement with the one the children are on?

I think you need to see someone who has a lot of experience with treating lyme.

There are Pediatric LLMD's - you might want to search one out, but you may need to travel.

When you aren't seeing any improvement, and in fact worsening with your son...then it's normal to question the treatment that he is receiving.
And..totally acceptable to seek out a second opinion...a "new set of eyes".

We can help you find one..if you are open to that?

Randy Eichner said...
I'm wondering what detox measures are being used. I don't think I see any. I could be wrong. My brain hates me today lol

Good point, Randy.

KAL - we also encourage all new members to take a look through the "New to Lyme?..Start here!" thread (its at the top of page one) It's got a lot of useful information packed in there.

and as Randy mentioned - what are you all doing for detox? It is something that is imperative when treating lyme and coinfections.

Hi KAL - I'm starting to feel like I need to double-check all the things that I thought were checked off my list of possible things making me sick or holding me back. For example, water, mold and parasites. Had all those checked initially but the more I researched the more I found out that the methods used may not have been accurate. So, maybe there is something more "environmental" holding you all back. As you already know, it's never just lyme.

I keep hearing stories - pretty much weekly about people with Lyme not fully recovering and then discover that mold is an issue for them. I'm guessing you've looked into that - hence the home inspection.

Do you or the kids take any sort of binder? This can really help mop up Lyme or Mold biotoxins that can just keep circulating in your body making you sick. I've tried charcoal with no real improvement. I then tried modified citrus pectin because I read it is a weaker substitute for cholestyramine. I can tell it's doing something because I am able to sleep better. I want to try bentonite clay one of these days and see if I get the same benefit.

Sounds like your functional med doctor has really tried, but maybe it is time for a new doctor. My heart goes out to you to be struggling with this. Two of my three children test positive but are not ill.

Thank you all for responding so quickly. The last 2 years has been overwhelming as years of poor health suddenly went spiraling out of control. So many different treatments, some that helped & some that didn't & some that made our health worse.

I have also been reading about detoxing. I do the epsom salt, peroxide & essential oil bath occasionally as do the kids. Probably not often enough. We have also tried doing a detoxing frequency on our frequency machine. We all did hair testing for heavy metals & the tests came back with very high levels of many metals. Two of the children had off the chart levels of uranium & my son had alarmingly high mercury. Our doctor started my son on a very low dose binder to start removing the metals & his health declined very quickly. He then had us do DNA tests through 23andme. I do not completely understand all the issues that came with these test results but will explain to the best of my abilities. These showed MTHFR mutations, inabilities to detox, issues with vitamin D & B vitamins and gluten & dairy. Our doctor tried to give supplements to our son to help with the MTHFR & other issues but the more he tried the more his health declined. After that our doctor tried to get an appt. for our son in another state with a doctor more familiar with the genetic issues he had. We got the appt. Our doctor said he sent all his records & we took paperwork along. When we got there the doctor we were to see was sick & there were no records of the info. & why we were even there. Long story short this route of help fell through & our doctor hasn't talked much about it because of other issues that keep popping up. It does seem that we start down one route of healing & that causes new problems to address or new problems arise on their own & new treatments are put aside to address the current one. I've thought about trying some of the detox treatments I read about but after seeing the results of doctor prescribed treatments I'm leery of venturing out on my own.

One question asked is if our doctor is LLMD or lyme literate. How do I know? He says he is knowledgeable & that he has treated many with Lyme. He did know what blood test to do & is trying many of the treatments I have read about. He does not have anything specifics on his website. He does say we are a very complicated to treat. At this point I am open to other recommendations to get a 2nd opinion. We live in NE. I have been looking at treatment centers in AZ & Boston. The problems is all say they are experts & their treatments work but how do I know?

Kal,

I forgot to mention that you can also search former posts by going to the search box in the upper right hand corner of this page. You just need to preface whatever you are searching with Lyme. Lyme-MTHFR for instance. I have gotten a lot of information for my own treatment through searches. (I have been treating myself until I can see a LLMD.)

KAL&3 - Sounds like you are trying your best to figure out what to do...how to tackle this.

I'm thinking you need a very experienced LLMD who is able to sort through everything...who perhaps has handled some difficult cases..and knows how to test, and rule out issues...and then move on to the next...etc.

Yes, people can be sick for years...but there has to be a plan - to rule out or treat one issue...then move on to the next....systematically move forward.

What about co-infections...has it been determined which ones you all have? And have you been treated for them?

I think it's all too much for you to be trying to figure out...you have enough on your hands just taking care of you and your children.

You asked about seeing a Counselor. I saw one before I was diagnosed...and it did help. It helped me get my feelings off my chest..it doesn't matter if she doesn't know about Lyme disease. You are a mom dealing with a sick family...and need someone to talk to.

If you want to look at options for a new LLMD - start a new thread titled: "Looking for LLMD in/near______" and fill in the blank.
Forum members can email you recommendations.
You will need to enable your email option, though...because we don't post the LLMD's names on the forum...for their protection.


Sending you hugs - hang in there.

We also have well water with uranium that is considered an EPA safe kevel. Our hair testing showed levels in the red area (me & all 3 kids). And what is interesting, we have never drank the well water unfiltered (use reverse osmosis), so me and my doctor surmise it is coming from shower (through skin, inhaling steam).

It has been a challenge finding a whole house system to remove uranium. Only ion exchange or reverse osmosis will do the job. RO is way too expensive and wasteful. I did find one that uses ion technology that we may try. If you're interested let me know. In your case you can probably put a system right on the well. Ours is a community well managed by a company so we are not able to.

In the meantime what I have done is limit showers and add about 1/2 cup of bentonite clay to baths to hopefully soak up metals so not absorbed through skin. I flush pipes for awhile after baths - I'm scared about it clogging things up. I also add Amazing Grass green powder to smoothies. My youngest daughter's last hair test dropped (barely touching red now), so I'm hoping it's working.

That said, mold could really be a culprit for you. Even if the situation was remediated, you and kids may genetically be unable to get rid of biotoxins. In that instance a binder is key to pull toxins out. Good news is some binders pull metals out too.

Peteza,

You are the best!

I concur bone broth with gluten free rice noodles are very kid friendly.

Feel better everyone.

Hi Kal,
Welcome to our community! I'm so glad you found us.

Inexpensive water filters will not work for the more serious needs this family seems to have - that's if they need a water filter. We have a well and our water is very 'hard water' - lots of hard water deposits on everything, and normal , inexpensive water filters don't even change that.

What area are you from? I would encourage you to find another LLMD for at least a second opinion. Girlie and I both have lists of some of the LLMD's and there are other lists that we can share so you can see what might be available near you.

A chronic illness counselor should be able to help, although a Lyme literate one would be best of course. We do have a few on our lists of Lyme literate doctors.

Some doctors declare themselves Lyme literate after attending just one ILADS conference, so they come at all stages of 'expertise' - it's easy to get one that doesn't know enough when you are dealing with a lot of complex issues with Lyme and company. Just remember, it's never ever wrong to get a second opinion, or just a new set of eyes on the problems.

The best thing to do is to break down the issues into stages - you simply can't conquer it all, all at once. No one can. First things first - you need to be doing what you can to get everyone eating as close to healthy as you can - obviously the kids are old enough to eat things you aren't preparing (at school, at friend's homes and such), but do what you an at home and encourage them to eat healthy when away from home.

Detoxing should come next because if you are full of toxins, then there's little room for more to accumulate - whether from dying bacteria or other means. There are some really good ideas in our 'New to Lyme?' thread and here: www.tiredoflyme.com/detox-methods.html

For example, I have not had any of the gene mutation testing done, although I do seem to have the same kind of issues as those that do - so I figured it was best for me to assume that I did and work to get my body to detox much better. It took a lot of diet changes as things with my body changed,
I use a foot soak,
dry skin brushing,
Lymph massages as needed,
making sure my bowels moved at least once a day (sorry if it's TMI!)
pushing myself to drink at least 64 ounces of lemon water each and every day,
liver/gall bladder flushes (all natural) as needed,
Apple cider vinegar,
Quercetin,
Alpha Lipoic Acid,
oil pulling with coconut oil and a few drops of tea tree oil,
using Yogi brand detox tea,
taking activated charcoal (when necessary),
and keeping the amount of stress in my life at a bare minimum.
(I'm sure I"m leaving out some things still)

But, there is such a thing as over detoxing, which can bring on a herx as well. There's a very careful balance we each must find with treatment and detoxing. Most of our toxins are in our tissues/organs, not in our bloodstream, so we have to do methods that will help 'release them' and move them into our bloodstream so they can be detoxed out. Over detoxing is when we move more toxins into the bloodstream than can easily be detoxed out by our body. So there's a careful balance that we must maintain between killing bacteria (which creates more toxins) and detoxing so that we can still be functional.This is why we suggest adding in more detoxing methods slowly (no more than 1 new routine every 3 - 5 days), and stop adding in more when you seem to be feeling okay or good. www.tiredoflyme.com/4-reasons-why-you-still-feel-bad-despite-detoxing.html

Supporting the body functions/systems is the next logical step, particularly for those that have been ill for a while. We have to have the body working at it's peak performance to heal from something as devastating as these infections. Supporting any gland, organ, body system that is struggling will allow the body to switch it's 'concentration' from just trying to function over to healing.

And, since this may be a lot of information for you, I'll stop there. (LOL) The learning curve for these infections is quite steep, so be sure to lean on us for help in understanding - yet remember we are all very unique beings and will need something slightly different than most others. It's a lot of work figuring all of this out for one person, so figuring it out for each member of your family will take time and patience. Let us help point you to articles and information to help you. Just be sure to double check all information you receive here as just because it's right for one person, doesn't mean it's right for every person.

There is no downside to getting a water filter for the shower-after all you have done why not. Amazon has them.
I am impressed with all you have done-keep throwing punches. Usually that answer is several punches not just one. I didn't hear anything about dental-have you seen a biological dds? Its well worth the money for a checkup- a biological dds not one who implants metal or does root canals.
This often is the piece holding a person back. Many lyme docs suggest a biological dds
Good luck

I really feel for you! I've been sick with Lyme, Bartonella and Babesia for over 4.5 years and have 3 kids. Can't imagine them being sick! Just me being sick is so overwhelming and trying to take care of my kids. Like you, I don't take care of myself as I should which I'm sure is part of the reason why I'm not healing.

I didn't know about detoxing the first 2 years I was sick. Once I started adding detoxing, the herding wasn't as frequent and as long lasting or not as intense. Just starting to drink water or tea with lemon was helpful. I squeeze half a lemon into each large cup I drink. Now I take chlorella, sarsaparilla, burbur, parsley, pinella and red root to help with detox. Also take a liver regenerating supplement with milk thistle and liver supporting herbs.

I also have a MTHFR mutation and every little thing makes me herx. When I first started taking methylated folate and b12, I felt worse at first as it got the detox pathways moving and I was detoxing faster than I could handle. I started taking those vitamins every 3-4 days. Once I didn't feel worse when taking the vitamins at that schedule, I took them every 2-3 days. Slowly I increased and now I take them every day without reaction. My worst symptom was overwhelming fatigue. I could barely function.

Getting the detox pathways going I think is a very important part in healing, just go very slowly with the vitamins. You can even start just taking them once a week. Also make sure you start with low doses.

I'm sorry you're in such a tough situation. I'm barely keeping my head above water and I really can't even imagine having my kids be sick as well. If you ever need to chat, I'm here. There are many more knowledgeable people than me here when it comes to these infections, but I do understand how tough it is to be sick and care for 3 kids and could certainly offer support in that department. Hugs to you and your kiddos.

I see homeopathy mentioned but have you considered a thoroughly designed herbal approach such as Steven Buhners? Or one of the offshoot formulas such as the chronic tonic? I may be biased but I feel I see higher success rates with that than any other so long as the individual tailors it to their needs