rowingmom

Terry Wahls is great. The fact that she was able to bring herself into remission from secondary progressive MS using diet makes me really think about Buhner's stance that some bacterial infections (especially mycoplasmas) can act parasitically causing extreme nutrient deficiency. He also mentions associations (causative or not?) between mycoplasma and demylinating diseases and some cancers. His book on the mycoplasma and bartonella coinfections was a real eye-opener.

DD also tested CDC negative on both the ELISA and western blot, although she reacted at a low level (indeterminate) for some lyme-specific bands on the Igenex WB test. She did test positively for bartonella. If I had assumed coinfections were not a factor because of her non-reacting CDC lyme test, we would be in a different place now.

Some parents who have found IVIG to be ineffective have gone on later to find undiagnosed infections.

Our LLMD wanted us to try an oral bovine ig serum - Virapress. For me it caused huge inflammation after 3 days at 2 drops a day. I didn't try it with DD. We use ResearchedNutritionals TransferFactor Multi-immune daily, astragalus (500 mg 3x weekly) http://www.smart-publications.com/articles/astragalus-is-the-safe-and-effective-immune-system-enhancer and ColdFx (a canadian made American ginseng extract daily in the winter as well) to boost the immune system. We also experienced inflammation dosing astragalus as recommended on the bottle (Buhner contraindicates high doses for use in chronic lyme and he was right), but 3x weekly seems good for us. Definately a boost in energy/vitality when starting out.

Just because I am now on a Buhner jag, he mentions in his mycoplasma/bartonella coinfection book that the parasitic behaviour of the many, many species of mycoplasma is responsible for the severe nutrient deficiencies which cause many of the symptoms of these infections. He has also found associations (causative or not?) between mycoplasma infection and demylinating diseases and some cancers. Interesting that Dr Terry Wahls has found remission from her secondary progressive MS with a intensive nutrition/paleo type diet. Thank you for the drug/deficiency list. You do a lot of leg-work for the forum.

We are still using organic egg yolks - always good to eat organic fats, as that is where pesticides accumulate. No whites though.

The ILADS website gives referrals of ILADS recommended/trained LLMDs. Please don't let the doctors now treating your daughter bully you into disregarding PANDAS as a possibility. So many of us have found improvement in our children by addressing infection.

I agree with norcalmom. Our LLMD realized right away that bartonella was causing DD's PANS symptoms. She (the LLMD) clinically dx DD with bartonella at our first appointment, and when her tests came back positive for bartonella the LLMD said that if we could bring down the bart load, the PANS reactions would subside. The LLMD used several different abx combinations to get DD to a place where she didn't immediately relapse upon abx withdrawl. DD still has positive IgG bart titers, but they have significantly declined from her original tests, as have her PANS/PANDAS symptoms. No other doctor I know would have had the knowledge to combine abx in the way our LLMD did. LLMDs are very openminded regarding the causative effects of infection (bacterial or viral) on psychiatric disorders.

We found an improvement with herxing on a pulsed protocol (malarone, tindamax, plaquinel, mino, azith) as well. The rest seemed to give DD's body a chance to detox in between hitting the infections with abx. Our pulses were only 3 days though, Friday, Satruday, Sunday. I found that her herxing would ramp up on Friday evening, but by Monday everything would have evened out again for school. We found that as we continued with pulsing, we would not be getting the large herxes that we saw in the beginning. Before that we had tried a continuous protocol while only pulsing tindamax on the weekends. She would herx with the tindamax, but not really get back down to a baseline by the next Friday, so as a result there was an overall escalation of symptoms. That turned into quite a mess. If you try knotweed, do make sure you are giving enough. We are using close to 1/2 tsp 3x daily, and find that 1/4 tsp 3x daily isn't quite enough.

Steroids are contraindicated with bacterial infection, so that may be the reason for your negative steroid results. If the immune system is supressed, infection will escalate. We are treating with the newer Buhner protocols for lyme and bartonella. I began DD on 3/4 the max dosage for adults of japanese knotweed, houttuynia, sida actua, tumeric and allicin, along with low dose astragalus and ginseng 3 months ago. She still has positive bartonella titers and I didn't want bart to get away from us. After 1.5 months we began to see significant herxing (panic attacks, some long bone pain). I pulled her off everything (except for 1/2 dose knotweed tincture and 1/2 dose sida) for several days and herx symptoms declined within a short period. However, after 4 days she began talking and moving excessively, ticcing and just generally being nasty. Talking back, non-compliant etc. I thought, just for the heck of it, I would increase knotweed (anti-inflammatory) back to full dose to see what happened. Within 1/2 hour of the tincture she was back to what I now recognize as her normal self. It was like a switch for her. Calm, compliant, happy, helpful even - doing things without being asked, ticcing declined back to near-absent. She apologized for how she had been acting and didn't understand why she had felt that way. Ibuprophen has never worked for us, and although DD has been on Japanese knotweed for some time, I didn't realize what a difference it made to her brain inflammation, and I was more than amazed at the result of increasing her dosage back to Buhner's suggestion for her size (76lbs). All of this happened about a month ago and she remains very close to remission on 1/2 the adult dosages of herbal tinctures/decoctions. As per Buhner's recommendations we use tinctures from WoodlandEssence and powdered herbs for decoction from 1stChineseHerbs. Buhner does mention in all of his books that his protocols can be used along with abx treatment, so I would seriously consider suggesting this to your LLMD if you like what you read in the book. He is supposed to have a new book on babesia treatment coming out next year, and although DD has never had what are considered to be babesia symptoms, her greatest improvements came with a pulsed babesia protocol which included malarone, azithromycin, minocycline, plaquinel and tindamax. It was after this that we were able to withdraw abx and not have an immediate relapse. We are also continuing with a lowish dose methylation protocol which includes sublingual methyl B12 and liposomal glutathione daily, methylfolate and P-5-P Mon, Wed and Fri.

Good for you for finding this article. This is the reason we follow a paleo, autoimmune diet. Here is a series of videos explaining Cordain's reasoning behind autoimmune reactions and MS. This is the first of seven videos. You are familiar with the Robb Wolfe paleo diet blog?

I would still check for yeast though, if only to be able to rule it out.

Thanks for the info. I have been contemplating diatomaceous earth for a while.

Is your son still on abx? He may be feeling and acting better because of a decrease in bacterial load, but the increased ticcing could be a result of die-off. We find increased ticcing to be the result of toxin overload.

Thanks. Wish I lived nearby and could attend. Buhner's Bartonella and Mycoplasma Coinfections book has a similar bent. That both of these infections are actually wide spread, consist of many different species, can be passed congenitally and through sexual contact, and that nutrient deficiency/immune supression results in symptom presentation. The individual cytokine cascades produced by each different infection enables the bacteria to more efficiently scavange the specific nutrients they need. Buhner cites 7 of Breitschwerdt's papers in the bibliography of this book. I wonder if Dr. Breitschwerdt considers these bacteria to be parasitic in the way Buhner does. I love veterinarians. They seem to be so open-minded. I'll check out the website, thanks again.

Yes. Try to find any reports etc written by Dr N. If your daughter has similar symptoms to others he has helped be sure to mention them.

We had a similar reaction to fevers. DD even mentioned how much better she was able to think and function. If she had a fever, but wan't too sick from it, she would love to race her bike up and down the street - no shin pain from bartonella and ticcing stopped!

@momcap. Perhaps your mailbox is full. When the change was made to the new forum we lost a lot of storage space.

Weird. I haven't used the PM since the changes on the forum, but I used it quite a bit before. Do I have to do something or set something to allow you to PM me? IDK? I got a red! message saying you were not accepting PMs. If you have time, maybe try to PM me to see if yours is functioning.

That didn't work, momcap, can I PM you?

Sorry to hijack the thread but.... @ momcap - I'm PMing you.

They don't use the same acronyms and codes in Canada, and when I showed one doctor the list of different tests, I was told Canada doesn't have any equivalent. I guess they order each one separately. The doctor certainly wasn't going to take the time to figure it all out for me.

Sorry, but I don't think there is much in the way of help. One of the Moms (momcap) who used to post here when we started out had a helpful PCP. She was so lucky to find someone who understood. Her son was responding well with treatment, but her PCP was eventually unable to continue. I'm not sure how her son is doing, but I don't think he was able to get the treatment he needed. Four doctors I spoke to in the Niagara area (PCP, ped psych, pediatrician, walk-in clinic dr) all said they couldn't requisition tests or prescribe meds for conditions they were not treating for. They were unable to treat DD because she required long term abx and Ontario doctors are constrained by the College of Physicians and Surgeons from doing so (not to mention they all laughed me out of the office when I showed up with DD's Igenex results, even with positive bartonella). The last couple of lyme treating doctors here were forced to stop practicing in June 2010 or 2011. Although our ped psychologist suggested PANDAS might be DD's problem (she was flaring with strep) the dr refused to run titers (she said they would be high from the previous infection) and that IVIG is only allowed if there is complete incapacitation. I didn't feel like waiting until that happened. You are one of the lucky ones if: 1) you are close enough to travel and 2) can afford the out-of-pocket payments. We took out a new mortgage on the house. Purchase everything with a dividend card. Your benefits may pay for some abx dispensed in Canada. CanadaDrugs dispenses Canadian sourced abx with valid US prescriptions. We were at least able to get that back, but actually the abx were not half as expensive as testing, dr visits, and supplements. While DD was on multilple abx we ran CBC, CMP, ALT, AST monthly. Canadian doctors don't even know what these tests comprise, especially the multiple tests run for the CBC and CMP. They certainly don't know about lyme/coinfection tests. There are more LLNDs starting to pop up, but they can't treat with abx either. Don't you just love our FREE Health Care System?

I think, if I have learned anything from this experience, it is that conventional wisdom (ie, the suggestion of regular medical doctors, re: diet, vaccinations, the offhand use of psych meds etc) is to be taken with a grain of salt, or maybe even the whole salt shaker!. If your daughter is having problems with hormonal swings, I would find a more natural way to address the problem. Perhaps low doses of bioidentical hormones. After the number of deaths attributed to Yaz and other BCP over the last many years has come to light, I will never again consider using them. They scare me. My father had a stroke and was tube-fed, aphasic and in a wheelchair for 15 years. I have seen what blood clots can do. My mother developed breast cancer from HRT. Artificial hormones do not act in the same way bioidentical ones do.

Thank you. That was interesting..