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Everything posted by lismom

  1. There is alot of variation. After starting a new antibiotic you may see herxing 2 to 3 days in. Once when we did an herbal I saw herxing hours later. You may see herxing with the cycle of the bacteria. Bartonella can be every 2 weeks herxing even when you've been on antibiotics for a time. You can herx 2 months in when things really start to kick up killing bacteria. For most who have been treating for awhile, you can start to tell. When we have Candida issues it raises symptoms just that extra notch. So we treat periodically. It can be tricky to tell at first what is what.
  2. Im on page with rowingmom. The bigger guns such as rifampin are the only thing working for us. Rifampin/biaxin xl. This is the second round of rifampin from 2 years ago. Cyst busting is rough, i can only give one dose of tindamax one day a month. Zithromax did nothing for my son, and without cyst busting, the 1 1/2 years we were on zithromax for pandas, turned the lyme and bartonella into cyst form. For some less invasive cyst busting and yeast control, I use grapefruit seed extract. Bartonella symptoms have been devastating at times when we weren't using the combinations right for us. You may have to find another combo.
  3. We are using biaxin xl and rifampin right now. Second round of rifampin in two years. This time ramping up much slower than the past. My son hadn't gone to bed before 5 or 6am in months and that has now improved as well as just how sick he was. I can also only give one tindamax one day a month right now. Right when I give the tindamax he looks improved then come two or three days later the herx. So slow and steady.
  4. My son has lyme/bartonella and that is and has been his worst symptom. We are going on 2 1/2 years treating. He had to do half days at high school last year. Still waiting to see about this year.
  5. Rowingmom, you found it ok to pulse rifampin? I wasn't sure you could go off it for more than a day or two at a time. I would love to do what you did. Tindamax is a necessary evil for us. Month 1 at sat. and sundays. And yes my sons tics increase and his fatigue gets worse with the addition of tindamax. Unfortunately after treating this for 2yrs, you tend to always see one step up and two steps back. But there are many symptoms that have improved. Even after these years you would think there would be no tears left, but when my son slides backwards its always upsetting. I have seen good days to. You have to keep battling.
  6. My son had huge herxes from gse. It varied, I gave it off and on, I gave it continually for about 4 months. I was told it cyst busts well, but is not systemic, it doesn't get to the brain and tissues well. And it works well for yeast. I found that after the months of continual use I had to stop it. I could tell it was a build up of the toxins. My son doesn't detox that well. I waited 6 months and have just started tindamax. This does get the cysts in the tissues and brain. More herxing but going slow. Rowingmom I can't believe you saw something from one drop! that's crazy we were on 250mgs at one point.
  7. Spent $300 on the Health Diagnostics and Research Institute to discover what I already knew, but wanted it on paper to make sure we weren't just throwing supps at him. His methylation system doesn't work. The test is very specific as it shows each step that is or is not blocked. With the lyme/bart he has had severe chronic fatigue. His body has recovered by itself in the past but now I think it needs a jump and some help. Hoping this helps him. Kathy
  8. My son who is 16 has had chronic fatigue due to lyme, bartonella, mycoplasma and newly discovered through blood work, methylation problems. His fatigue has been severe at times and at times does improve some. For us, treating the infections and helping the methylation do impact his fatigue. You will also find a connection between the methylation issues and chronic fatigue. If the body can't ride the bacteria and toxins, their body is not only blocked from getting rid of this properly but being depleted of important things to help normal body function.
  9. All we had for bands were 31 positive and 41 positve. Zithromax only made things simmer. Augmentin helped a bit. It wasn't untill omnicef and flagyl did we see a bartonella rash. From there the pieces started to fall in place. I wouldnt necessarily give up on antibiotic combos or a lyme diagnosis.
  10. We are waiting for my sons methylation panel blood test. How do you help with BH4.
  11. We are about to start with one 250mg of tindamax one time per week and gage how that goes. This is at the 2yr mark for treating lyme/bart. We did use grapefruit seed extract every 6 months and did herx, but I don't think its able to get to the real hiding places. I think tindamax is one of the strongest antibiotics to break biofilm and cysts. And for those who have this in the brain, which I know my son does, I know we don't have a choice but go after this. If not addressed the cycle of biofilm and cyst will just keep the disease alive and well. We are also starting round two of rifampin after two years. What a battle this has been for my son. Kathy p.s. bart makes biofilm aslo
  12. Susan, can I ask if you tested your kids for methylation issues. Just wondering from those who are on tx 3 yrs and still sick. That is my next move. Had testing done yrs ago but never wanted to add to our already taxing tx. Just wondering, thanks, kathy.
  13. Sorry, I don't mean to hijack, but which houttuynia are you using? HH2 or the regular strength? Thanks so much. Using the regular strength, 1 3x day. Going to start adding in 2 3x, then HH2.
  14. Yes thank you KaraM. I just messaged you. I am interested. Its so hard to know who to go to because one, we have been treating for so long and two, its out of pocket for us. LLM, thanks for the info on methylation issues. I know this is for sure an issue. I need help and instruction on this. I am so tired of doing this myself. Exhausted... I did have him tested 2 yrs ago and he does have mutation for 1298a and 6777c. Bartonella is still an issue. The rash is still prevelant as are the symptoms. The herb houttuynia has given some herxing we have never experienced, so thats an interesting thing. Been working up on this herb. LLM can you PM me the doctors name? and are you happy with this dr.? Thanks so much, Kathy
  15. Yes we have tried everything except cipro which i don't want to. Bad reaction to bactrim. Using houttuynia right now. Treating this for 2yrs. Sons depression and fatigue are too much. I want a real work up from a real llmd. I cant do this with myself and pediatrician anymore. Actually have made an apt with Dr. J in Germantown MD. He had a cancellation.
  16. Not satified I can find a good llmd in NY. I read up on some, but seem to do the usual. We have tried so much to rid bartonella. Actually if anyone has info on Dr. J in Germantown, MD, I would appreciate it.
  17. Using magnesium malate. This is the second time I've tried to supplement magnesium for my son. First couple times it increased symptoms slightly so backed off. This was 6 months ago. I know he is extremely depleted because I haven't given this for 2 years or so since treating lyme/bart. Was scared I would be feeding the bug. Hindsight, of course I was wrong. I have read some people do get tired and to keep going because the magnesium storage will build up and even out. It really has helped twitches, insomnia, depression and appetite though. Any thoughts on magnesium? kathy
  18. Started treating for kpu 5 days ago. I've since had to back down then off today. What would be the best detox for this possible metal dumping from treating kpu. Thanks, kathy
  19. Fixit, it is a known symptom. It fits right in with my son. Rifampin gave the worst herxes. Unfortunately he herxed the entire time. I don't think I detoxed well enough at that time. Its not always about yeast. The bacteria being attacked and killed releasing so much toxin is more likely the culprit. Rifampin is tough, but good. We did it for about 8 months and my son's body had enough. For us, it didn't wipe bartonella out. It prob helped some though. Right now I'm doing Zhang's herbs and seeing more results than I've seen in a while. But that is after 2 years of heavy abx. Kathy
  20. My son is 15 and weighs 135lbs. I started with just one hh pill from zhangs protocol. Did this for week one. Then 2 a day week 2. The last two weeks he has been on 3 a day. He has had herxes he's never had in the years we've been treating. symptoms he's never had before. I am positive it is getting to the brain where I know antibiotics weren't getting for him. We were treating bartonella for close to 2 years with different abx combos. His stretch marks had never changed untill just the other day I noticed they had faded some.
  21. What would be considered the number one detox supplement? ALA, NAC or acytel glutithione? Ticcing is our main indicator. Thanks, Kathy
  22. Rowing mom would you share the detox protocol you're using? Thanks, kathy
  23. My son 15 always has this issue. He is a big facial and neck ticcer. Always an increase with new abx and really always consistantly ticcing with abx. He is on herbs right now after plateauing from abx and the tics are very low and subltle. Bart and lyme have facial ticcing as a big symptom contributor. So its confusing whether the tics increase from the killing and toxins and/or from irritating the vagus nerve in stomach? Does the abx kill stronger and more quickly versus the herbs? although interesting that one of the herbs did give my son a completely new neurological symptom without effecting the tics. I personally think its a combination of things.
  24. Insomia is at the top of symptom list for lyme and especially bartonella. There are some herbal remedies such as passion flower, theanine and of course melatonin. It does take some time. At least it did for my son. However it does come and go during treatment changes and flares. Unfortunately my son has no problem staying up until the wee hours of the morning. Unfortunately this is quite common.
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