sf_mom

I suffer from chronic infections/viruses and late afternoon fatigue was a ongoing problem for me since I can remember. The number one thing that has turned the fatigue around is HD IV Vitamin C - 50 grams twice weekly. It is a strong anti-oxidant. I understand IV vitamins like Myers Cocktail and amino acids can be super helpful for fatigue. If you do not have access to IV treatments you can try HD C until tolerable 'diarrhea'. There is a powered form of C made by Health Force that I use with my kids. We have been addressing things like detox, methylation, KPU throughout treatment although helpful they did not improve this particular symptom much.

I agree with Laure... Larium can produce one of the most dynamic responses 'possible herx' but once through those symptoms there can be tremendous recovery. It is also working extremely well for my friend and her PANS son who both have Babesia. I intend to start Larium myself in the next month or two. We work with an LLMD that has treated many patients with this particular anti-malarial and you truly need someone experienced in possibly psychiatric symptoms that can occur. Our Dr. pulses 3 days on 7 days off and the third cycle is typically the toughest. I would not take it daily and I would not do this particular antimalarial until Merpron or Melorone have been tried first for a long period to bring overall load down. I have been on both anti-malaria's fairly consistently for over 2 years so my load from Babesia is down. I have two symptoms currently that are predominantly Babesis oriented. Headaches at base of head and thigh pain. Both symptoms have cropped up since stopping Melorone 8 weeks ago.

Yes, I actually injected it. At the time my lymphatic system was overwhelmed by die off. Swollen lymp nodes along neck that ached tremendously. It did bring some daily relief for that specific symptom each morning. However, by each afternoon the aching would resurface. Probably should have been taking it twice daily. Its been at least two years since I've used it.

Our Dr. is saying at 2 or below as well. We are currently using a combo of Armour, Iodoral, Selenium, B's for me. My numbers were stuck at around 3, early morning temps were low and tongue was still swollen even after a year of Armour at 60 m.g. We added the Iodoral, Selenium, Bs to help bring the number lower. Fatigue is much better, temp is normal throughout morning, tongue is slightly better and we are waiting to retest in the fall to see if number has dropped. It is slow going. Kids are on low dose Iodoral, Selenium, B's, no armour.

Is it possibly he was bit previously? A healthy immune system can keep Lyme in check for a long time. Things like surgery, vaccinations, other bacterial infections of strep, mycoplasma, chlamydia pneumonia, can trigger the cascade of symptoms both physical and/or psychiatric. Your sons results show a response to some Lyme specific bands. Our LLMD would treat based on those results and PANs presentation.

Hypo/Hyper thyroid could be caused by iodine deficiency. Dr. Brownstein book covers iodine in detail and how it impacts the thyroid. Similar to KPU you need to do a Iodine loading test and collect urine over 6 to 24 hours. Temp upon waking that indicates normal thyroid function should be between 98.2 and 98.8 via mouth. Another indication of thyroid issues is the tongue that appears scallop along edges, slightly swollen. http://www.drbrownstein.com/Iodine-Why-You-Need-It-p/iodine.htm

Both Dr.'s are fantastic, integrative and will look at a broad range of issues impacting DD. However, since you know you are dealing with chronic Lyme/Bartonella (probably since birth) you really can't beat Dr. Horowitz experience with those specific infections and how they may impact other immune function. Again, several individuals on this board see Dr. H or Dr. B. Some have even seen both hopefully those individuals will chime in or PM giving you their experience.

Can I make a suggestion. I am not sure who your LLMD or Lyme treating Dr. is currently but you have one of the best LLMDs in the county in NY. His name is Dr. Richard Horowitz and located in Hype Park, NY. It is common for people with LYME et al to have an inability to sleep. I met one person recently with the same issues..... literally up for weeks on end which is turn caused many psychiatric issues. Dr. Horowitz will know how to help your DD. Please call and explain the situation and see if you can't get in on a cancelation a.s.a.p. I understand an appointment with his NP is just as good if you can not see him immediately. There are others on this board that see him and would be happy to explain how he has helped their children.

Since your DD can't gargle..... I would also recommend rubbing ozonated Olive Oil on her gums to augment antibiotics. O2 Zap is a great brand. We see a biomedical dentist that uses ozone as first line of defense for gum and sinus infections. It really, really works. However, its typically injected and a child her age could not tolerate the treatments. Sometimes they blow the ozone on gums and not inject which I think she could handle. Most biomedical dentist treat with ozone and are very versed at dealing with Lyme et al and its impact to teeth and gums. Ozonated Olive Oil is also fantastic for almost any bruise or skin condition. Even clean ears and nose to clear or protect from ongoing infections.

As you know yeast is 'very' difficult to deal with especially while on antibiotics but even harder when chelating heavy metals. Based on everything I've been told by our Dr's or read the white discolorations of skin typically on the face can be two things: Yeast or Zinc deficiencies. We had both issues but have been treating for zinc deficiencies for some time now. Chelation can really kick up the yeast due to heavy metals dumping while depleting vitamin/minerals. For us, it's probably a little bit of both issues.

Thanks. Good information. We are definitely seeing flairs from chelation cycles with Bartonella symptoms (sore soles, specific headache, specific rashes with more than one child which rifampin is treating) and have obvious yeast symptoms of white patches of skin on face, white tongues and some hyperness on Diflucan days.

Two of our children take Rifampin and Diflucan together. However, we also measure their SHBG (I am not sure what it stands for) levels which is something to do with the rifampin they are taking. Sorry this is one test I am not clear on. It just measures if you should continue Rifampin or stop. We also pulse the Diflucan every other day but do 5 days continuous during chelation which might make the combination more tolerable.

All our children are positive. Here are their results DS - 9 years old: Originally diagnosed PANDAS at 5 1/2 years old. Treated one year and responded well to 3 hdIVIG 8 weeks apart. 6 months post his last IVIG treatment he had blood in his stool for 7/8 weeks. Instead of having him put under and scoped we saw an LLMD to see if he could help. At the time we thought there was 'NO WAY' he had Lyme because we had done Igenex and he was positive for band 41 only and had no co-infections. Our LLMD had us do a comprehensive stool analysis and DOT BLOT test instead of rerunning Igenex antibody test. The DOT BLOT looks for antigens in the urine and its 'like' finding DNA and he was positive. He was also found to have parasites and yeast via stool analysis and the blood in his stool resolved within 48 hours after starting Alinia. Over time we found EBV, HHV6, 3 strains of coxsackies, biofilms 'substantial issue', strep pneumo titer deficiencies, KPU, additional vitamin/mineral deficiency, detox/methylation issues, food allergies of milk, cheese, eggs, heavy metals of lead/mercury. He had a clinical diagnoses of Bartonella/Babesia. The Bartonella/Babesia diagnoses were based on his brother's positive results, clinical response. Later in treatment he showed/shows more classic physical symptoms of both infections. We may check for converted results for Bartonella/Babesia. DS - 6 years old, twin. Diagnosed at 3 1/2 years old. IND for Lyme, PCR positive Bartonella and Babesia, EBV, HHV6, 3 strains of Coxsackies, additional vitamin/mineral defiencies, detox/methylation issues, food allergies identical to older brother, heavy metals of lead/mercury, IgG deficiencies along with strep pneumo deficiencies, heart related issues. Lacked classic sudden on-set but evaluated for OCD at 3, rage behavior, sleep issues, sensory issues, etc. DD - 6 years old, twin. Had a very weak immune system with greater IgG deficiencies than her twin. She came up serologically negative for almost everything but had similar viruses as her brother's. She was underweight and had lost most of her language ability about six months post MMR. She also has other similar deficiencies but has more of an issue with heavy metals. She struggles to most currently with treatment but is now a normal weight and height thanks to specific enzymes. She has some fairly severe eye sight issues.... that we hope will be improved. They are all going through chelation right now which has been rough but off cycle the boys look almost fully recovered. DD is having a tougher time with chelation but each cycle she gets a slightly better. We think all the children have at least another year of treatment left due to chelation. We also plan to check nagalase levels on all the kids and that may set us back further on our hopeful recovery timeline.

There needs to be further research on this issue, period. Here is our experience. DH and I both had tons of exposures growing up as kids but neither remembers a specific TICK bite. I grew up in Minnesota and spent summers in northern MN camping and sailing. DH grew in the northeast, western MA. His back yard was very wooded and ran along a creek. He was a camp counselor prior to college. He also spent hours hiking and camping even through his college years. He remembers having many TICKs on him but no specific bite. DH had a 'mono like' illness in college that caused an inability to sleep with extreme fatigue that took a very long time to recover from. He was also diagnosed with Osgood-Schlatter's Disease due to knee swelling and bone pain in his late teens. I was NOT symptomatic until I met DH. After our first year of dating I had minor symptoms of insomnia which included nightly waking from 3 a.m. to 5 a.m. and then followed by late afternoon fatigue. I thought it was all due to stress at work. I also had some occasional joint/hip pain when sick with minor cold. At that time, DH also had minor symptoms but more of them which included intolerable reflux, periodic prostate pain, frequent stiff necks and shoulder pain, sick more often with longer recovery, odd rashes, sometimes a chronic cough that would take months to resolve. After my first pregnancy I was slightly more symptomatic but nothing too serious. I had a rough twin pregnancy and had about six seizures per day starting in week 35 when I was given steroids for full body rash that they thought was PUPPS. My blood pressure ski rocketed, I had 4 plus edemia but no proteins in my urine and a lot of generalized pain. I could not tolerate being in a car due to pain. They had to deliver the twins at 36 1/2 weeks because I was in such bad shape. Post pregnancy my Dr. was still very worried about the high blood pressure because it was not resolving properly. One year post pregnancy I was still feeling I like I had a rough pregnancy.. a lot of hip pain, knee pain, urinary issues and fatigue. At the time, I could hardly tolerate sleeping on my side because it was too painful for my legs. Each time I was sick with a cold these symptoms would worsen and remember the joint pain being intense for a least a week after each cold. Dr. K "Pandas" felt I had some type autoimmune disease. My husband positive results were the following: Chlamydia Pneumonia, HIGH strep titers that increased when treated with antibiotics (Anti-DNase-B 980 at highest, currently just above 400), parasites (very difficult to treat - 1 1/2 years), IND on Lyme specific bands and maybe some more positive test results that I am forgetting at the moment. We mostly treated him herbally along with some strong anti-parasitics. All of his ongoing symptoms have resolved. We now treat each cold like he has a bacterial infection for 10 days. He did get a stiff neck along with shoulder pain recently and also treated him herbally. This seems to keep things in check for him symptom wise. I have been treated for chronic Lyme for 3 years and considered to be having a successful recovery. My only bothersome symptom is periodic fatigue along with a specific headache, some muscle fatigue. I've needed two naps within last two weeks for these symptoms. It is felt my remaining issues are lead, yeast and Babesia. We plan to hit the Babesia very aggressively for a couple of more months, finish chelation and test my nagalase levels. If everything looks good we will unwind treatment to see how I do off antibiotics. I am only on Maxatag and Diflucan right now. We are very concerned about the re-exposure to each other and take necessary precautions. I'd love to hear other peoples experiences as well. EDIT: Lyme results: IgM 41+, 31 IND, 34 IND, 18+, we did further confirmatory testing and that was positive. EBV, HHV6, Mycoplamsa, Negative for Bartonella/Babesia but have very specific symptoms that improved with treatment. I also might be forgetting other positive results for myself. Older DS first symptom prior to sudden on-set was a chronic cough.

I forgot to mention Dr. H has worked with a child that had chronic gagging and retching. It could be possible he has some type of infection in his esophagus. Gagging and retching can occur from esophageal yeast infections. BUT, from what I understand it can be other things beside yeast.... build up of white blood cells, viruses "CMV", etc.

Barb, There are some great Dr.'s in the Bay Area. Most of them are integrative and some have expertise in one area or the other but ALL understand PANS/PANDAS/TICS/OCD and are treating successfully. We too were initially referred to Dr. Lowe for movement disorder. We actually never met with him because our son was diagnosed with PANDAS in the interim. 4 year later and he no longer suffers from PANS but is still being treated for his chronic infections et al. Here is the short list: Dr. Lynn Mielke: Developemental Spectrums 'website not working for some reason' Pleasanton Dr. Elisa Song: Whole Child Wellness - Belmont Dr. Chandra: Whole Child Wellness - Belmont Dr. Ray Patel: Redwood City - Located in same office suite as Dr. Harris. Dr. Steven Harris (3 other Dr.'s in practice all integrative - NPs, you see Dr. Harris every other visit) - LLMD Dr. Christina Green - LLMD - Los Altos There are more but I would start with Dr. Lynn Mielke or Dr. Elisa Song (she might be closed to new patients). These particular Dr.'s will do the most extensive testing to investigate all the issues your son may have. If there are multiple chronic infections they both 'sometimes' prefer to work with Dr. Harris as well. Dr. Sunjya Schweig - Petaluma

I am happy to read your post that he is trending better!!!! AND, it sounds like you have a good plan in place. I wanted to mention you can take Rifampin and Augmentin together. My older son is currently on Rifampin/Augmentin XR/Azithro for Bartonella/Lyme. I do think the improvement on Augmentin and Rifampin are telling and you might consider adding a one month trail of Rifampin again to see if can push things further.

Our children have several TBI chronic infections and viruses including HHV6, Coxsackies all three strains and EBV. We have one child that had difficulty falling asleep (melatonin and magnesium helped put him to sleep), night waking with often night terrors, nightmares, sleep walking and early waking. The early waking was ongoing for the last two years and occasionally he still sleep walks. For us it was the 'combo' of bacterial load, viral load BUT predominately HEAVY METALS that has caused his symptoms. We have been doing chelation cycles with him since April and he is now sleeping from 7:30 p.m. to 6:00 a.m. and he just turned 6. He has been treated for Lyme et al 'chronic infection' since he was 3 1/2 years old. However, if your child does have a heavy metals issue chelation is not something I would recommend until entire bacterial load and viral load is way down. We have been treating chronic viruses from the beginning and titers are just now looking more normal. We do an ongoing rotation of anti-virals mostly herbal remedies. To help start to regulate sleep I would start by looking at vitamin/mineral deficiencies, neurotransmitter issues plus methylation issues. Once the body is function better she will 'start' to sleep better. Get the viral and bacterial load down and she'll sleep even better. 'EVENTUALLY' and if she has heavy metals issue she will want to sleep. Hope that helps.

EAMom: I concur! I love Dr. S personally (he cares) but will add there is just as good if not better Dr.s closer than Petaluma in the Bay Area. Each have their unique specialty but all treating many PANS children. Happy to discuss via PM why the drive is truly not necessary.

We live two miles from Stanford. I know many of the Dr.'s at Stanford clinic treating PANS personally. I am also familiar with many the other Dr.'s outside of Stanford Children's in the Bay Area treating PANs and their unique treatment strategies. You are welcome to PM me. We are fortunate to have at least 10 great PANs Dr.'s in the Bay Area!

All three of our children have gestational Lyme with almost similar infections to your DD. Two of our children had PANs presentation. All have been treated for Lyme et al for the last three years. We live in Northern CA and see a LLMD here and one in CO. We are fortunate to have a few good LLMDs in the Bay Area. When our older son was first diagnosed with PANDAS (prior to discovering Lyme et al) he had three hdIVIGs and he responded well to treatments. I believe it temporarily helped him to fight the infections he unknownly had at the time. His last treatment was January 2010. From what I understand from those with Lyme et al sometimes IVIG helps, sometimes it doesn't and sometimes it is temporarily too much. We choose not to pursue hdIVIG with our younger twins even though they had immune deficiencies and one had OCD. They were 3 1/2 years old when diagnosed with Lyme. They are now 6 and both are recovering as hoped without IVIG but we have done a lot to boost their immune system in other ways. All three children no longer suffer from OCD or PANS presentation. Your Dr. will hopefully provide good guidance on if its warranted and when it might be appropriate throughout Lyme treatment. In our experience treating both Babesia and Bartonella could temparily cause an increase in rages and OCD as a herx. Lyme et al is very complicated disease and from what you have outlined above you have a very long journey ahead. In my opinion slow and steady wins the race with recovery. Wishing you the best. By the way, older DS also had dilated pupils that are now resolved.

It seems like it might be some type of gum infection. Has the azith/cefdinir combo helped yet? When we have any sign of sore throat, mouth sores, cold or flu circulating in our household I have my kids gargle with MMS, dunk their tooth brushes in the liquid and bath in it. Many ingest MMS for chronic infection but it can easily over oxidize the red blood cells and would caution against ingesting. Dr. K - 'Lyme' Dr. uses it along with many of his herbal remedies.... enema's, ingestion, bathing, gargling, etc. You can find some of his comments regarding MMS on Better Health Guy website, etc. It is strong stuff.

I would retry Rifampin combo again if possible for at least 30 days. It was obviously helping for some reason. If you see the same type of improvement I would stick with it for a while. I suspect the IVIG might have stirred something up.... meaning, a potential chronic infection that is now ahead of current protocol causing a slow increase in symptoms. It could be yeast but the prior improvement with Rifampin is definitely a clue. It is worth a trail of Rifampin again to know if it was truly helping. If you get a similar positive response I would suspect you are still dealing with something.

When you did stool analysis was it a full comprehensive that included yeast and opportunistic bacteria in gut? Or were you just looking for parasites? Here is some good information from Better Health Guy on Heavy Metals. http://www.betterhealthguy.com/topics/heavy-metals

IVIG will not fully treat Bartonella. It 'might' help support the immune system to fight it a little better but you really need long term combo'd antibiotics. IVIG can be a mixed bag for those that suffer from chronic infections. It can help temporarily, it can have no effect, it can cause an intense herx and the individual can appear worse for weeks. You need to be on the right combo of antibiotics and methylation/detox should be address to also support any die off of toxins.