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Are you glad you started Lyme treatment?


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There have been a lot of posts recently about problems with Lyme treatment, herxing, backsliding, etc.

 

DS9 is just about to start. His tics are very frequent right now -- every few seconds. It's been this bad before, but not for a long time.

 

My question -- given your experience, are you glad you went down this treatment path?

 

Thanks.

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I would say yes, at this point. My dd11 just yesterday told me that she feels better than she has in a long time, even though she herxed for a month. That being said, ironically, last night OCD crept back in on her and she had a rough evening. I still think we are doing the right thing.

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There have been a lot of posts recently about problems with Lyme treatment, herxing, backsliding, etc.

 

DS9 is just about to start. His tics are very frequent right now -- every few seconds. It's been this bad before, but not for a long time.

 

My question -- given your experience, are you glad you went down this treatment path?

 

Thanks.

 

 

YES YES and YES! Please don't mistake the sharing of information as regret - we are all moving to a better place. When I look back at my posts from last fall, (when dd10 was first diagnosed with PANDAS) I can tell you that we are in a much much better place now. The treatment is not always easy, but it is better than not treating, or not treating appropriately. Although we all want it to move faster than it does, we are moving in a positive direction. It takes some strength.

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Very happy.... Our older DS is better than he has ever been 'remember congenital Lyme' in his life.

 

My post last night was from pure exhaustion, treating Lyme is not an easy process and it is not perfect in our household. You will need to truly be prepared for the herx's and have the intellectual fortitude to survive. I wish I knew a short cut or an easy fix... but I don't. To go from a functioning child... to a raging, OCD child in five weeks is rough. BUT, if this was cancer we'd be doing radiation right now and also much worse. The herx's are a necessary evil.... to a degree and can always limit or change the antibiotics to make things just a little more tolerable.

 

-Wendy

Edited by SF Mom
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My question -- given your experience, are you glad you went down this treatment path?

 

Thanks.

 

 

yes. i think w/o it, ds6 would have just kept having periods of 'good' and 'bad' without truly reaching remission. not that he is there now, but he's been doing markedly better lately. however, dr did put him back on anti-viral that caused intense herx-like reaction last july b/c he sees evidence of that virus back/out of hiding. ds is quite hyper. dh keeps saying, 'it's challenging, but at least he's eating' -- herx was OCD non eating. it came on at day 10 last time but there were precursors -- we're at day 8 now. so white-knuckling it. but anxious to get to the other side. all in all, i truly believe we'll reach a point of some type of 'cure' (using that loosely -- really mean remission that we watch closely) that we wouldn't have otherwise.

 

 

it's stunnning when i think of ds9. of course, we were much more aware when he first presented strong symptoms, so caught troublesome issues quicker -- although he likely has had infecitons for a long time -- or perhaps congenital that got pushed over the edge. i very much like our ped but not using him to treat these issues. most notable physical symptom was 'exercise-induced asthma' symptoms. blood test for TBI all neg. did much 'checking out' in a traditional sense, including chest x-ray, blood work, EKG, very expensive echocardiogram. end result was basically a shoulder shrug and suggestion to use inhaler before exercise. which we did to make ds more comfortable. with integrative dr, we really felt we were treating the root cause. 5 mths later, ds9 is doing great physically. neuropsych symptoms left quickly, then we had trouble with brain fog/cooperation which i now believe was due to probiotics. no more ankle/knee complaints. back to on par with 9 yo boys as far as endurance and ability -- now w/o the inhaler. so absolutley, i believe w/o following TBI path, ds would have been tied to that inhaler and depressed as he fell out of line with his peers b/c he is very athletic and sports oriented.

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Yes! Yes! Yes! I was thinking of posting some milestones today because I have been feeling very down lately about our treatment. But it's just because things are kind of either in a rut or very aggrevated right now. dd9 and I are much better since starting treatment.

 

In October when we went to our first LLMD appt, my brain fog was so bad that I was worried I would lose my job. I had muscle twitches all over my body and I had no energy and a lot more pain. Now I very rarely have any muscle twitches. My mind is mostly back, I can think clearly. I don't feel lost all the time.

 

dd9 is much more sane, much less OCD, sleeps in her own room now and not in my room. Has fewer fears. Appears normal to most people. Has much less pain.

 

dd8, not much change but she has been on treatment for only 3 months maybe. She seems to be a little more complicated. I wonder if she has other things in play that we don't know about. Or it just needs more time. She's not worse for sure only not much change.

 

We still go up and down, have good days and bad days. But before we started lyme treatment, every day was bad.

 

Susan

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We have been treating Lyme for 7 months and have made progress in areas that I didn't know were Lyme related (mood, behaviors) and we've dug up some issues that I wish had stayed silent (mold) but it's definitely heading in the right direction. The brain fog for my son is better and even though we haven't gotten rid of his eye tic, I can definitely see it lessening. We switched from antibiotics to herbs within the past couple of months so that has been an adjustment also. For us, just being with an LLMD who is helping us peel the onion has been a huge blessing. We have not had much herxing either but we are going slow and steady too.

Edited by justinekno
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Yes! Our son is doing so much better since starting Lyme/Bartonella treatment 8 months ago. He's not well yet, and its two steps forward, one step back, but we've seen many improvements and he is a much happier kid than he was at this time last year. He is sleeping through the night for the first time in his life, we can turn off his lamp at bedtime, he can sleep over at a friend's house, he's making it to school much more often, no more robber/"checking" OCD, no more yelling/raging every day, he's not terrified 24 hours a day, no more "bi-polar" symptoms, he's in sports, starting an instrument, I could go on and on. I think we have a ways to go, but I have no regrets about the direction we've taken.

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Yes! Our son is doing so much better since starting Lyme/Bartonella treatment 8 months ago. He's not well yet, and its two steps forward, one step back, but we've seen many improvements and he is a much happier kid than he was at this time last year. He is sleeping through the night for the first time in his life, we can turn off his lamp at bedtime, he can sleep over at a friend's house, he's making it to school much more often, no more robber/"checking" OCD, no more yelling/raging every day, he's not terrified 24 hours a day, no more "bi-polar" symptoms, he's in sports, starting an instrument, I could go on and on. I think we have a ways to go, but I have no regrets about the direction we've taken.

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Yes, I too am glad. The last 2 months have been hard, but a lot of that is because it brings back so much PTSD from the past 2 years of Pandas. But prior to the backslide, we had 3 awesome months that have kept me going. My son got sick almost 3 yrs ago, when he was finishing kindergarten. Since then, he's struggled physically and academically, and I could never be sure how much my belief that a bright kid was inside was real and how much was wishful thinking of a Type-A mom. I don't really know the "real" kid. The three good months when we started lyme treatment gave me the much-needed reassurance that the bright kid is in there and that a lot of things are indeed illness-related and not just a spoiled, moody kid. To have setbacks after that feels like a kick in the gut, but I got a chance to re-acquaint myself with the kid I've been fighting for all this time. And that keeps me going. Despite the setbacks, we too are getting to a better place.

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just want to add a quick YES, nothing is 100% certain, but I know my dd started getting better once we got a lyme diagnosis and started with a LLMD. I think she is still fighting some OCD, but that's just it, SHE'S FIGHTING IT! She has done a complete turn around from just last summer, and in some ways she is 150% better than she she's been since, well maybe since birth! Could be a congenital issue here too but can't say for sure because I haven't been tested yet. But the answer is YES-I was so skeptical of LYME, but I have to admit, the proof is in the pudding, she is getting better:)

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oh just to add, we did 4 HD IVIG when treating for PANDAS.. we saw improvement in baseline but still alot of OCD and tics. I think the IVIG helped fight the lyme also, then then the tweeking of abx, along with time has started to pull it all together for her- and lets not forget FAITH!!

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Thank you, everyone. That's very encouraging. I really appreciate it.

 

 

oh just to add, we did 4 HD IVIG when treating for PANDAS.. we saw improvement in baseline but still alot of OCD and tics. I think the IVIG helped fight the lyme also, then then the tweeking of abx, along with time has started to pull it all together for her- and lets not forget FAITH!!

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