sf_mom

Love your update! We are also using Diatomaceous Earth for more than one reason: Absorption, Parasites, Metals

They are called "Floaters". You can google. Our older son had them as well at one time.

I agree with both SSS and RowingMom, Heavy metal chelation will draw out the infections/viruses and new antibiotics for Bartonella will cause die-off response both contributing to an increase in symptoms. One option is to suspend current protocol until symptoms are tolerable. For some perspective: We are waiting to chelate our older son until he has been fully detox from mold and has no symptoms. We suspect that will be next year sometime. He has been treated for 4 years.

You might also consider Dr. Shea. He has definitely seen some PANS kids. Here are some links for his background. http://www.ilads.org/ilads/officers-directors.php http://n-e-t-s.org

We did experience a die-off response or increase in symptoms when we started higher doses of Zinc. We also had high copper levels/low zinc when we started supplementing with Zinc. Depending on child... they take 90 m.g. of Zinc or more per day. We monitor Zinc/Copper ratios based on SpectraCell results. If you are supplementing Zinc you should be supplementing Copper at 8 to 1 ratio. For example: 30 m.g. of Zinc = approximately 3 m.g. of Copper. Here is great write up on Zinc/Copper relationship and symptoms you might see depending on if you have high copper/low zinc. What is stated in the article was very true for our kids down to the foods they craved at the time. http://www.tvernonlac.com/copper-toxicity.html

Ditto Rowing Mom's story times 3 children. Gestational Lyme, Bartonella, Babesia, 1child 'FL 1953', mold, viruses, etc for all our children. One considered ASD, one considered Aspergers, one sudden on-set of PANS at 5. The twins regressed after MMR at 18 months. Older son regressed after MMR at 5, a strep related illness and exposure to virus in three week period.... suddenly a different child. All of them 'almost' fully recovered. No OCD, no ASD/Asperger's diagnoses, etc. 4 years of treatment. We are still detoxing mold for all three (one almost done) and trying normalize IgG levels in one child with monthly LD IVIG. Interestingly the child that has always done the best with treatment had IVIG for Kawasaki's diagnoses just prior to MMR vaccine. We just had our first soccer game last week and we are thrilled older son was able to keep up on the field with his peers (he had stamina issues probably from mold). Huge difference year, over year in their recovery process.

Yes, we did the test about a year into Lyme treatment. Our older DS had a "substantial" biofilm problem. For us, this information was very critical in how we treated for a long time. He is now in his 4th year of treatment and only has a few lingering symptoms. We decided to retest him for biofilm's this year and he came back with "few" biofilms which made me glad we had run both tests. We also tested our children for FL 1953 via Fry Labs.

Your length of treatment and his inability to attend school after 3 years of treatment makes me think there is something else there... Have thoroughly ruled out mold? Has he been treated for parasites including Babesia? Have you recently rechecked IgG subclasses? Heavy metals? I can appreciate your frustration and sadness over the disease but also know you will keep trudging along. It's probably time to look a little further for the cause of continuing symptoms.

Oops, I forgot to add did you do Shoemaker ever? How about on-line visual test for $15. Does she have yeast issue? My understanding from 'Better Health Guy'. If there is chronic yeast there is mold. In our case, this was very true. Real Time Labs was extremely helpful to us but it isn't for everyone. Sometimes you just aren't dumping toxin into urine. Perhaps give her cholestyramine and then run test. It is an expensive test.

Just a couple of things if you should ever change your mind about IVIG. In our experience LD verses HD has been very helpful for our DD. You can test for IgA antibodies to help determine if there will be a reaction. Octagon has the lowest of IgA compared to other products. It is covered by our insurance and we have in-home services. For now, keep running subclasses 1 to 4, IgA and IgM every time you do blood work. If the trend is down over time you will easily qualify for coverage.

Knowing your story you are not going to like what I have to say. I've learned that low IgA means there is 'like' an allergic reaction going on in body and immune system can't keep up. Perhaps why you are getting response from colostrum. In our case I strongly feel it was mold toxins. I know you focused on your home (which may not be the problem). It may not be mold but perhaps some other environmental toxin she is unable to deal with currently. LD monthly IVIG has helped our DD tremendously as we treat her chronic infections. Definitely less reactive and hardly any mood liability. Her IgA is only at 24. It will be interesting to see where she is when it normalizes.

Musty smell is always mold. I was told that by the company that does environmental testing for mold. Her reaction suggests she is sensitive to mold toxins. I would definitely have her do the on-line VCS for $15 and Shoemaker Panel. Then maybe Real Time Labs.

I would still do Shoemaker Panel for mold. I understand mold is like metals. You may not be be dumping toxin at time of test. Per a mold expert here in CA any C4a over 10,000 indicates mold. Shoemaker will help make the determination if mold is still an issue. We have been doing cholestyramine for 10 months. It takes at least 4 months to start making progress on toxin overload. Definitely saw an increase in symptoms with daily cholestyramine. We just retested older son for first time to see how his numbers have dropped. It has also taken at least six months of LD monthly IVIG to see progress for DD. Her IgAs are still at 24. She is still low in subclass 1 and overall serum levels. I am told it can take up to a year to see solid results with IVIG and chronic Lyme et al. The protocol we are following is Dr. K out of CT. He spoke at ILADs and has written about neuro-Lyme and use of IVIG. Also something to consider... Testing for oxidative stress.

We have high lead along with mercury. Same ratio in all of us. DD also has a few other metals, highest mold issue, lowest immune function was under weight - 7% on growth chart. Kids are low on protein and eat tons of it. Monthly LD IVIG has really helped... Huge growth spurt. In our experience heavy metal chelation caused an increase in symptoms. The metals do attach to the bugs and help to form biofilms. Metals can also take a long time to resolve. Our Dr.s are estimating 18 months. I am curious how you tested for mold? Have you done full Shoemaker Panel? Our experience is it took both the panel and Real Time Labs to determine if mold was an issue.

For me: I did not come up positive on comprehensive stool, blood work nor did I feel I had any symptoms. How I discovered I had intestinal parasites was I went to a an Ayravedic Healer for my Lyme and they preformed an herbal enema. Shortly after treatment it felt like my liver was hurting and went to LLMD to run blood work. All testing came back normal. However the next day I started finding tape worms. Sorry if it's too much information but it's important to know I had no indication of them. The pain was most likely from many of them being bundled up together in my upper intestine. I am still treating. Our older son did come up positive on comprehensive stool analysis. 100 years ago people used to treat their entire family for parasites every six months. Some how we have lost the importance of treating regularly.

There is a lot out there for parasites. Here are some we've used. Rotation and treating for a long period of time is important. Para Comp (Herbs) Byron White: A - P (Herbs - currently using) Scram: Health Force (Herbs) Diatomaceous Earth (Fossilized remains of tiny, aquatic organisms called diatoms - currently using) Alinia (prescription) Invermectin (prescription) Biltricide (prescription) Some other suggestions: http://www.betterhealthguy.com/topics/parasites

Should have, could have, would have.... I wish we had investigated mold much earlier in our Lyme treatment process. Mama2Alex really pushed me on this one and we are grateful.

You are well covered for Bartonella but after seven months maybe its time to hit the Lyme harder. Making a rotation to more effectively treat a specific bug has always brought a baseline improvement after initial herx for us. Some of the antibiotics that might be more Lyme focused would be Doxycycline, Azithro, etc. Biaxin 'Clarithomycin', Rifampin and Cefdnir are Bartonella focused and you have probably WHAC'd that infection down for now. It doesn't mean its gone but having less of an impact giving other infections to surface. Hopefully, the concept is making sense. We have pulsed Tindamax for periods as well. Perhaps discuss taking a break with LLMD and reintroducing further into treatment.

The easiest thing to do within the next month would be to rotate one of the antibiotics he is on. Our LLMD has always described treating Lyme and co-infections as a game of 'Whac a mole'. You pound down on infection then another needs to be treated. For example: the Lyme is under control but now the Bartonella is an issue. I think you might regain some ground with a rotation minus the Herx

I think our twins were 4 or 5 when we first started Mepron. They are currently on it again and recently turned 7. Did you notice the night sweats increase with Mepron? I think backing off until symptoms resolve is a good idea. If you reintroduce Mepron start with 1/4 tsp and work your way up over months (4 to 6) to prevent this type of Herx. Or perhaps start with herbals first. Mepron will cross treat and is effective for parasites and Protozoas so perhaps you are hitting something and it is not specifically Bsbesia. From everything you outlined it dose indicate the same response we got from Mepron. We hung in there and all our children did surpass baseline prior to the introduction to Mepron. It's tough to witness but ultimately it helped.

NancyD: Ramping up on Mepron was directed by LLMD here in CA. Artemisinin will definitely help treat Babesia. I have heard great success with IV Artesunate 'Artemisinin' but it will also pack a punch... For now, stay focused on treating babesia but perhaps with more tolerable herx response. http://en.wikipedia.org/wiki/Artesunate Anything that oxygenates red blood cells like: Ozone, HBOT, Hydrogen Peroxide, etc. can also create a herx and why I think GMA recommends against it 'at this time'.

Our experience was similar and it can take a while to resolve. All three children, similar had herx. How much Mepron is he taking? You can push through or you can reduce amount of daily Mepron to decrease symptoms. For example we typically start at 1/4 tsp - twice daily for 2 or 3 weeks, then bump to 1/2 tsp for 2 or 3 weeks and then bump to 3/4 tsp. If you back down it will take some time for symptoms to calm down as well. With everyone I speak with off forum Babesia is a tough bug. Most of us have treated for at least 1 1/2 years. With older DS we treated for 1 year, stopped for a year and are currently retreating for about 6 months now.

It could be yeast and it could be intestinal parasites. I would do a comprehensive stool if you haven't already.

I would suggest testing for Babesia via Igenex for both strains. Low blood pressure is a symptom of that particular TBI..... just google. Like IVIG, PEX has helped some but not everyone. Perhaps, anti-malarials in combination with shots would help.

I wanted to add yesterday: In my original post in 2011, I was hopeful that all our children's immune deficiencies would recover. They did for a period of about a year when we first started Lyme treatment. However, after that all subclasses inclusive of IgAs & IgMs have worsened since. I turns out we were living in a moldy home and the toxin load was probably having a huge impact on them. Our DD does do LD monthly IVIG and the first four months of treatment were very helpful. However, she did regress as her immune system activated from the IVIG. Once she regressed we switched antibiotics and her recovery took off again. We look at the IVIG as an adjunct therapy to her Lyme treatment and not something alone will bring remission of symptoms. For her, the combination antibiotics and supplementation was just as critical to her successes with treatment.