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Everything posted by evergreen

  1. You appear to have the same scenario going on that my sons and many others here have, Strep, Lyme, OCD. Getting the infections under control should help but of course this is easier said than done when you have a certain genetic makeup. You may want to check into the methylation issue if you haven't already. You can look into the 23 and me test which will show you where your biochemistry is compromised, then may be able to supplement to correct the deficiencies. there is much information on this forum about this. It is not an easy thing to get help with but more docs are starting to be aware of this and hopefully progress will be made. One of my son's is just starting to treat with nutritional supplements based on genetic testing done by Dr. T. Hope we get results!
  2. Thanks juliafaith, that is amazing about the blood work aligning with the ART testing. Who would have thought? We have no ins. coverage for ND care unless it is billed under MD. those in our area charge well over $100/visit last I checked. It sounds like you've found a good situation but I couldn't travel to west coast. We've been traveling to CT for 7 years for Dr. J and Dr. B among others, staying in the Ronald McDonald house, which unfortunately is coming to an end since ds is 21. The travel is wearing me down anyway.
  3. This topic hits me in the gut! It is one of my biggest stressors. My youngest was homebound since the age of 13 and on up during high school. His friends (had many) moved on. As he started to feel better I just think he had trouble relating after all he had been through and the maturity he acquired. Also not going through high school, puts one at a social disadvantage. He returned to boy scouts which was a great experience. Fast forward to the present, he is a junior living away at college and has adjusted well to academic life, although still no social life. He is just too sick with severe chronic fatigue. But he claims it doesn't bother him, and i believe him. He is completely focused on college work, works well with his peers there, and is goal oriented. I have had to accept the fact that he has no social life, a tough thing to do. There are things that are just out of my control unfortunately, but I completely understand your pain! I believe it will all work out when he feels better.
  4. thanks smarty. We have done things naturopathically for a long time, a little homeopathy but not as much. He had IVIG as much as the insurance would cover which wasn't enough. It did cure his movement disorder problem (blinking) very quickly but has not helped mediate the autoimmune component of Lyme, still symptomatic. He also still has a touch of OCD, I would love to find an integrative MD such as you are describing. Is he in the northeast and would you share his name? It is encouraging to hear you have had success with this type of treatment.
  5. Hi All, Would anyone like to comment on whether or not they have had success with ART? Tried it for my ds 21 last year but he didn't buy into it...did not believe it could possibly be an effective tool. He is very analytical, (an engineering student). I think the practitioner was not a good choice either. He had been on the waiting list for Dr. Marc Schwartz in Glenside PA and after 1 1/2 years is able to schedule an apt. now. He has just started with Dr. T and we are very impressed with him. Pandas is mostly resolved, however the chronic fatigue from Lyme continues and was recently tested for mitochondrial disorder by Dr. J, then referred to Dr. T. He had further genetic testing and Dr. T has some ideas for nutritional supplementation we can try. He doesn't think we need to treat Lyme, but rather if we change the terrain in his body, he should improve. So he won't go to Dr. Schwartz but I am considering going myself. Longtime Lyme, babesia, dysautonomia, and inability to take anything for detox is the summary of my problem. We have both done the 23 and me and tried to treat according to the findings...not much success with that. I struggle with getting through the day and have no energy to put into researching it. My cognitive function is poor. we consulted with a practitioner in the MTHFR network by skype . I can't really say any progress has been made, very dissappointing. Has anyone had success with treating with Dr. Schwartz and/or ART in general? We have spent a fortune so I do like to get some educated advice before I make an investment in our care.
  6. You guys are great, I should have been on the forum along time ago. i have just returned from a funeral and am feeling very ill so will absorb the details when recovered. Many ideas here to think about. SF mom, I did the stool test this morning on my way out the door to the funeral. That was fun, and how coincidental you should ask. LLM, ds20 has been sick and treating for 8 years. ds28 was only dx with Lyme about 3 years ago and PANDAS 1 1/2 years ago but had been having psych symptoms for years. If it had not been for ds20 we never would have known what really caused his problems. Both had chronic strep throat and ear infections as children. I also have a ds 25 who is healthy and was hardly ever sick so it is obvious it is genetic. If I had half a brain left I think I would write a book.
  7. again thanks LLM! The trouble with finding a new LLMD is the question do we go as apackage deal and spend 3 times the cost or does one try and then the others. I get so confused with all of these doctors. My ds20 is aging out of Dr. J's care after 7 years. He did wonders for him along with Dr. B and IVIG but we had never addressed the alternative route to any great extent. Early on we did but he was homebound and I had difficulty getting him to apts. At that point nothing seemed to make any difference. He was so sick I believe he would have died if we had stayed with mainstream care. Which is a moot point because they weren't giving him any care, even at CHOP. about the dentist, he refers to causing a "mercury storm" if taken out before I chelate and have too much mercury in my system. He must have an MD tell him it is safe to proceed. I most likely will not be going back to him anyway since he advertised free consultations on his website, quoted $75 when I called to make the apt. When I saw him he decided my case was complicated and he would have to spend time writing letters, etc and charged me $250. Then we had words by email over it and I have decided he would probably be quite expensive to have the work done with. But that is his reasoning. He is a member of a group called mercury safe dentists or something like that. Now I am afraid to proceed until I get test results and chelate, since I think it is highly likely I have high heavy metals. I like your idea about eliminating some of the supplements because some are neuroscience and contain folic acid. Complicated. I also take alpha lipoic acid and milk thistle and cannot take sulfa so I will rethink that too. thanks again and I will try to make a point to post about my experiences with the MTHFR.
  8. Wow you do know your stuff! Can't thank you enough for taking the time to explain all of this. I have spent hours on the MTHFRsupport.com website but have not read anything by Yasko. Is that where you get your best info? I think you are exactly right about the high metals. I recently saw a dentist who specializes in removing the mercury amalgams safely but he would not remove any until I am tested. My LLMD will not test me until I have them taken out since she says I will just be positive. So I got my GP to order a test. Have not had it done yet because I am very low functioning and have trouble getting very many things done on a given day. also my brain is impaired and at this time of day 2pm, I am still in a fog. I feel very toxic and always feel better as the day goes on and I get rid of toxins. I am plodding along trying to make the best decisions. Have you gotten help for this from your LLMD or or you doing the legwork? i do feel my doc gives us too much at once and we argue about it. If you start so many things you have no idea what is affecting what. I need a new doc and don't know who to go to. I am currently on plaquenil, ceftin, and supposed to start artemisin again, pulse dosing, but have not done that yet. I have so many supplements and meds, I counted 26! Have not started any chelation yet. I know we need to address mold too but too overwhelmed to do that. We are looking into infared sauna. I have always done a lot of detoxing through food and exercise. I make Kombucha tea and beet kvass which are very helpful. Your info has been really helpful and makes it clear that we need to do the test. I'm looking forward to going over it again when my brain clears. to clarify, do you know this to be strictly something you have to pay out of pocket and go to alternative practitioners or would insurance possibly cover it? My GP suggested genetic counseling but I am guessing that would not get us anywhere. I am referring to mainstream healthcare.
  9. Thanks, from all my research it looks like it could be key to why we have not made enough progress with all the treatment we have had. I am becoming very cautious before jumping into anything since we have spent a fortune and are still sick. Actually the boys are much more improved than I am. They were given the methylfolate and methylb12 which is the "available" form you are supposed to need if you have these mutations and they tolerated it. I started it and felt like I was hit by a truck. Also felt like I would jump out of my skin, severe anxiety,rage, and shaking, etc. I stopped taking the vitamin and felt better. I have been reading that those symptoms could indicate having other polymorphisms or SNP's, which has been explained to me are other gene mutations. If you have them your biochemistry is all messed up (for lack of a better understanding). The problem seems that very few practitioners deal with this and I am so tired of spreading out our care among so many doctors. I have trouble coordinating all of it, none talk to each other and it is so expensive. I am venting since I have had enough of it after 10 years of illness and heartache.
  10. Hi all, I don't get on the forum often as I would like since I am so ill. We are getting started with the MTHFR gene mutation issue. Myself and one son are homozygous for A1298C and other son hetero for 677/1298. I am looking at the MTHFR support website and wondering if any of you have done the 23 and me test and if so, any success? Our current functional LLMD does not think that MTHFR is important since "all my pts. have it". Background, we all have Lyme and coinfections (longterm), boys have PANDAS, and immune deficiency. thanks in advance for sharing.
  11. I can totally relate. We are all doing the best we can. I also feel that I have PTSD. After 10 years of dealing with illness, how can you not? My son who is in his 20's now, wrote a song and sang it to me with his guitar after he was feeling better, on Christmas morning. He thanked me for standing by him and putting up with all of it. It was very emotional and made it all worth it. I would expect your daughter will also develop this insight later with maturity. I tried talking with a counselor after becoming repeatedly frustrated and angry with those around me that did not understand, but it didn't help, actually frustrated me more since she could not grasp the reality of my situation. I have found that getting away from the house is very helpful. It is so hard when your house is a stressful place. Easier said than done, I know.
  12. In our experience, Augmentin seemed to help while waiting 4 months to start IVIG. He also did have some relief with psych meds. These diseases present uniquely in each individual. They are still learning what to do. I would expect to get some help from the antibiotics alone, then make a decision after you see what happens. best of luck to you
  13. My ds was on rifampin along with many other antibiotic combinations and other meds (ssri and others). Dr. J always said it was not a problem as it would only make the other meds slightly less effective. I chose not to stress about it and he is now bart free. Hope this is helpful.
  14. We have been going to Dr. B for 1 1/2 years and at the start I asked this question. I was told that the only way he will do it is if administered in the office infusion center, and that he could not be responsible for any other method. It IS very costly and difficult. I understand and hope you are able to work it out. I have found that most everyone there comes from out of state or even country. As far as any meds given for IV insertion, I don't know since my kids are older and tolerate it well.
  15. Thanks so much! This may be important to our family as we have struggled for many years with Lyme,pandas, psych issues and immune deficiency. I sent you a pm.
  16. Thank you for all the advice. I enjoy hearing from people who have had as much experience with these difficult diseases as I have. It is much food for thought. Now I have to try and clear my Lyme brain fog enough to make some decisions. Not only for my sons but myself! Red, I have long suspected mold involvement with all of us. I would love for you to pm me some of the names of these docs you are referring to. "dr. Jones" has been my ds20's treating doc for 6 years and has done a darn fine job. He has gone from completely non functional ( I was afraid I would lose him) to now in college living in a dorm. Phila mom, I would also like to hear the ones you recommend. For the record my son showed continued Igm for many Lyme bands which slowly decreased over time until it mostly converted to Igg. Then after a year away at college with exposure to mold in the shower and toxins in the room(air fresheners and others) he felt worse, lost weight and now shows Igm bands again. He also herxed when given new antibiotic. So we know he continues to struggle with Lyme. He also has immune deficiency. Thanks again for all advice!
  17. I have 2 sons with the stretch marks. My youngest who has been the sickest had bright red marks when diagnosed, they gradually faded which is how Dr. J monitored the bartonella. They did get bright again and now have faded. His bartonella test finally showed past infection, IGg, when they faded. He has been sick for 7 years and it did take much of that time to fade (after the appropriate meds were given). He also has immune deficiency so that is likely why it took him so long. It is known to be a very difficult infection to clear. Good luck, Sue
  18. Thanks for the welcome. It is high time I started talking about all of this after all these years. Friends and family don't understand any of it and it becomes isolating. The combination of lyme, pandas and cvid is more common than most realize. I have come to believe that most people with longtime lyme which has been treated but not cured, have immune deficiency. all the best to you, sue
  19. thank you red, I will check it out, the newsletter looks interesting. We currently see Dr. B, but are looking to treat closer to home. It becomes harder as my boys are now adults in their 20's with commitments. Dr. B. has helped them though.
  20. Hi mdmom, It sounds like we have been having the same problems. I feel for you too as I know first hand how difficult it is to see your kids suffer and also dealing with everything while you are sick. The OCD is terrible, it has been a while since ds was bad, really hard to live with when it is. It can be very isolating. My son actually was hospitalized at one point because he had lost 30+ lbs. (thought to have an eating disorder). I KNEW he did not have eating disorder but agreed to hosp only to get him intensive cognitive behavioral therapy. They took out his picc line and tried to tell him Lyme was all in his head, that he didn't really have it. I may write a book one day. I would be interested in your LLMD's name. That is not really that far for me. Does he treat the pandas and cvid also? Is he "no insurance accepted" as usual? As far as plasma exchange, that was never suggested to us over all these years. He had one other course of IVIG about 4 years ago with Dr. katz in CT. given at home. It did not help with the OCD and at that time there were no tics. Are you seeking approval for IVIG under the cvid diagnosis? That is what they will approve it for (over PANDAS) as far as I know. ps. I realized I was using the abbreviations incorrectly. I have 3 sons, and was using the birth order as the number after dd. It looks like people use the number for age? My lyme brain at work!
  21. can anyone recommend a good holistic Lyme specialist in the south jersey/phila area? We are not new to Lyme but ds is aging out of Dr. J's care and would like to stay closer to home. He needs work on yeast issue. He has been sick for 7 years and also has PANDAS and immune deficiency. We are also looking for a new PANDAS dr. My head is spinning but need to make changes in his care (and mine) as I have also been sick many years. Not happy with my LLMD. Thanks in advance
  22. Thanks for your replies. It is really hard to make decisions about their care when there is disagreement among the docs. I am hoping to hear from any others with feedback about the dose issue. I had not paid attention to the dose given until now since my sons are so improved. It is felt they should continue since it has helped and their condition is considered autoimmune. DD3 has had longstanding Lyme and really lost his teenage years to the illness, not being able to go to school until recently and having little social contact. DD1 had mostly psychiatric symptoms including what was considered to be bipolar. Long after DD3 became ill, we came to find out his problems were in fact PANDAS and Lyme. Never would have known if not for his younger brothers illness. He is doing very well now after antibiotic treatment and IVIG. It is really quite amazing. I see people all the time and wonder if they also have this condition. Have tried to alert one family to it but hit a wall. I really wish I could help more people with what we've learned.
  23. hello all, I have probably talked to many of you at Dr. B's office as we have been there for over a year. I have 2 sons now in their 20's with PANDAS, CVID, Lyme and co-infections. It has been increasingly difficult to travel from NJ due to their schedules in college. Our insurance nurse case manager has suggested Dr. Jyanouchi in Newark NJ. She is supposed to be willing to do IVIG at home. My dd3's LLMD is of the opinion she may not give a high enough IVIG dose, which could make them worse. Does anyone have any information on this? Appreciate any advice from those in the know. Even though we have been dealing with all of this for 10 years, I still don't feel very confidant in my decisions mostly because I also have Lyme and have considerable cognitive difficulties. Mostly, I am overwhelmed by all of this. Thanks in advance.
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