Lyme battle, one week wonderful then gone again

[LindaMW]

This has been such a dicouraging journey. Long story short, 2 1/2 years ago my son had strep causing pandas, classic symptoms, but has not recovered fully. Has been off and on going to school, then last fall we tested positive for lyme. Been on doxy and biaxin since Feb of this year. Has not been to school since last Sept then this week he went back and said the anxiety and headaches were gone. Now he stopped going and all the symptoms are back. How do you explain that for one week things were that good? What this does to a person is horrible. One extreme to another, in one weeks time.

[Rachel]

Did he pick a virus up a school and over load his immune system. My next thought is his body going back to school full time and meeting new stressors that sent his body in that down hill swing again. This has happened to my son after just attempting to go a half day of school.

[LindaMW]

Those are both very good points. He did sleep the entire day and then told us he has another loose tooth. I just wish we knew how to treat all this. He has been tested for everything and he is a little low on zinc, which we supplement.

 

It was just so amazing how much better he was for one week, like his old self again. That just makes it hurt even more when it all crashes. He said he does not want to do half days because he just wants to go and not stand out. He misses it so bad it breaks my heart.

[sf_mom]

It is a very rocky recovery. We are in our 4th year of treatment.

 

About two years ago I went to a small Lyme event and they went around the room and had everyone introduce themselves and explain their history. There wasn't one individual in the room that had been treated under 8 years but me. You can imagine at that moment I realized our journey was going to be much longer than ever imagined.

 

However, with what you are outlining.... slow progress with treatment, I would definitely investigate mold. The Real Time Labs Mycotoxin Urine test proved very valuable to our family. Shoemaker panel and C4As all looked fairly normal so we weren't that concerned about mold. When we finally did the urine test, older DS had a sky high black mold issues.

 

Edit: We also had low zinc, copper and found the amount of supplementation wasn't enough for our family (40 m.g.) One child takes about 120 m.g. of zinc per day and 14 m.g. of copper and she is a different kid. Ratio should be 8 to 1 zinc/copper. Dr. Klinghardt will often recommend up to 250 m.g. of zinc for adults. You need to monitor the copper/zinc ratios closely and we do that with SpectraCell testing every six months.

Edited March 13, 2014 by sf_mom

[LindaMW]

Our llmd just gave us the order for SpectraCell testing. He is only doing 15mg of zinc for now but I guess that is why the dr is testing.

 

I know the lyme journey is long. I have been reading and researching all I can about it. Sometimes the more I find out, the more I get discouraged when I realize how far we have to go. No one understands, the school, our families, no local support groups for either pandas or lyme. They see anxiety and want to push him to do more, "you have to fight it" is all I hear. Then I am judged on how I am letting him do this and letting him stay home. If they could only live in our shoes for one week and see the extremes we have seen.

[dasu]

Did you find a black mold source in your home? Were you able to remove the mold issue, and if so did you see any improvement?

 

 

However, with what you are outlining.... slow progress with treatment, I would definitely investigate mold. The Real Time Labs Mycotoxin Urine test proved very valuable to our family. Shoemaker panel and C4As all looked fairly normal so we weren't that concerned about mold. When we finally did the urine test, older DS had a sky high black mold issues.

[sf_mom]

I truly sympathize with your situation. You do have a long journey ahead but they can and do get better. He will be forever grateful for everything you have done for him on his journey towards to recovery.

 

I am glad you are doing the SpectraCell. It was extremely helpful to us and don't be afraid to REALLY bump the zinc if it is still low or even borderline. Again, keep the copper supplementation at 8 to 1 ratio.

 

FYI: I agree people don't understand. One of our son's remaining symptoms is stamina. He just can't keep up with his peers at times and most recently on the Basketball court. The coach doesn't understand and yells at him to hustle even though he knows he has chronic Lyme. We try our best to give our son strategies... like stand under the net. I breaks my heart to see this occur.

[sf_mom]

As for mold. When we moved into our home five years ago we touched every surface: painted entire interior, refinished hardwood floors, new carpets, corrected any drainage issues outside the house, checked all the wiring, new light fixtures, resurfaced all the tile, etc. It took a tree falling on our house last July to find both black mold and unidentifiable white mold behind the plaster walls and in the eaves. The tree was a 150' pine and snapped the house structurally. The house was condemned that day and now needs to come down. We were well insured, we all walked away unharmed.... it was a blessing in disguise because we found the source of mold.

 

After the tree, we had the house environmentally tested; lead in building materials and water, air born asbestos from tree and high concentration of mold.

 

In my opinion, I would test the individual first as the mold can come from anywhere.... even school. If your child has a genetic detoxing problem for mold, then absolutely move forward with Real Time Labs Mycotoxin Urine test. If they come up positive for mold then test the home. Once you discover mold in the home, it becomes a discloser issue if you should need to sell and it is not abated properly.

 

Edit: We have seen improvements since moving and detoxing with cholestyramine. I am off antibiotics and only detoxing for mold and heavy metals. Any residual symptoms are very manageable for me. I am hopeful. Our older son had a chronic cough that has mostly resolved since moving. He is currently TIC and OCD free. Just an occasional cough right now but also getting over an illness. He has very minimal symptoms. We are working on detoxing mold, then will recheck nagalase (either treat or not treat), challenge again for heavy metals and if everything looks good we will wind down treatment. Unfortunately, the list above may take us a year or two to accomplish.

Edited March 13, 2014 by sf_mom

[dasu]

Interesting. We are looking at homes now and this is one reason I am scared to buy an old home. Our county's primary school now has a recognized mold problem and elected to build new sports fields over fixing it.

[rowingmom]

I would also investigate all coinfections. We treated DD for lyme/bart for 1.5 years, but would relapse within one month of abx withdrawl. In a last ditch effort our LLMD rx'ed malarone (for protozoa like babesia) even though DD had tested negative for babesia. It was then we saw the real improvement. With malarone and tindamax for 6 months we were able to wean to herbals.

 

DD has been pretty healthy with no PANS symptoms since then.

[dasu]

That is fascinating. I need to find a LLMD.

[LNN]

lindamw - fwiw, it "only" took us 2.5 yrs on the lyme journey to get to wellness. Everyone's journey is different. But we too had additional issues beyond lyme - a zinc deficiency known as pyroluria, that we will treat for life - and a mold sensitivity.

 

The mold causes tics, brain fog and respiratory problems for my kids. 3 times in the past 3 yrs, we've found that a tiny amt of mold can set them back. Things like mildew covering the bathroom window after a winter of hot tween showers without turning on the vent or opening the bathroom blinds...a moldy chair cushion in the basement that somehow "polluted" the upstairs air enough that their bodies reacted (caused eye tics that went away once we threw out the chair)...and mold on the outer plastic drum of the washing machine (the metal drum you see sits within an outer plastic drum you can't see and the mold grew between those two spaces).

 

Both the mold and the pyroluria were stumbling blocks and we made renewed progress against the lyme once we cleared the path. You just need to keep at it and eventually you'll get there.