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Chronic Lyme experiences

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Old 09-26-2011, 10:57 AM   #1
Join Date: Jun 2011
Location: NY
Posts: 93
dganz HB Userdganz HB User
Chronic Lyme experiences

Am wondering if someone will post who has been treated for chronic lyme. Specially what was your path to getting better. I know not all chronic lymies may be cured. My LLMD believes I have 2 co infections, Bart and Bab. Have been on 2 abx (1600 mg total) and about 45 supplements, vitamins including drops to flush out toxins. I realize every course of treatement is different including how well someone's body responds to it. I've saw a small improvement at about 3 weeks into abx, but then it was back to full illness. I'm approaching 6 weeks into treatment and feel like I never had a few tollerable days like I did at 3 weeks. I'm getting discouraged and wonder if I'm ever going to feel halfway normal. Have had a few herx, but nothing too bad. The ill feeling gives me anxiety and increase heart rate. Sometimes wonder if there is hope.

I even think my LLMD may think I had lyme at a teen since grew up in Connecticut and had severe mono at 19. So severe was bed ridden for over 3 months. Perhaps wasn't diagnosed then. Never felt well after mono. But once I got a tick bite last summer and a rash, the degree of illness has been brought to a whole new level....very sick

Jen and Jodie, if you see this and have time to comment, I would appreciate it. I read everything you guys write and apply that knowledge to help me understand all of this. Thank you both your contributions to this page.

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Old 09-27-2011, 08:12 AM   #2
Join Date: Sep 2011
Location: san jose, ca, usa
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positive123 HB User
Re: Chronic Lyme experiences

my 10 year old son was has just being diagnosed with lyme and co-infections , not sure which ones as LLMD is going to extra blood testing, he was bit by a tick 4 months ago , and based on his symptons (not blood test) Dr put him on antibiotics, he is going through Herx at the moment, but he is unable to walk at all , Is this Normal? i am so worried, and feel so bad for him , he is in pain and only 10 years old, .
from anyone experience will he have a full recovery since we have picked up the disease early? ( mom is very sad, but needs to stay strong & positive

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Old 09-27-2011, 10:45 AM   #3
Join Date: Jun 2011
Location: NY
Posts: 93
dganz HB Userdganz HB User
Re: Chronic Lyme experiences

Jen, you are a real rock to us that battle this disease and enough is not said about you and the folks who speak from experience and try to give hope to all who view here.

I may or may not have had lyme as a teenager. But more pressing is the lyme I have now. I was curious of what people's experiences (traditional or homeopaethic) and what symptoms came, went and what increased. My LLMD did say things come in cycles (she probably meant better and worse feeling). But as you know, when you take 1 step forward, it sometimes means 3 steps backwards the next day. Coping with the anxiety of when your body knows something is wrong is very hard to keep in check. I'm sure people who have lyme know what I'm talking about.

I have read 100's of hours of everything I can get my hands on to learn as much as possible, viewed Under our Skin, etc. Reading this much helped me put the pieces together to figure out lyme was a strong possibiity based on my account. Unfortuantely, it took me a year to get diagnosed. I am in total outrage of what this country has allowed to happen with this epidemic in th US and the lack of good conscience in trying to make good protocol for diagnosis, better testing and better treatment within the insurance and medical industry. We willingly accept cancer, diabetes, ALZ, Parkinsons, CFS, Fibro and the like, but refuse to help people early on with lyme to avoid what?? People have the best chance of curing this by early intervention. My lyme friend told me her demotologist puts patients on abx when she is doing a dermo check and finds a tick attached.

Again, thank you for your encouragement and advice.

Old 09-29-2011, 04:43 PM   #4
Join Date: May 2011
Location: Monroe, NY
Posts: 65
FastUno HB UserFastUno HB User
Re: Chronic Lyme experiences

I am in the same boat & feel your pain. Outraged & amazed (:0) as my mood states. Amazed at every aspect of the disease and what we are allowing to occur. There is no one person that can stand for us that will truly have an impact. Since I have been diagnosed, I have discovered that there are 6 houses around me with 14 CONFIRMED tick bites and diseases progressions. Mine being the worst thus far, aside from a healthy and active 42 yr old lady who died across the street from aneurysm.

I advise for you to read "Cure Unknown" by Pamela Weintraub. She has done HUNDREDS of hours of research and has dug really deep into the Lyme fiasco.

Old 09-30-2011, 11:12 AM   #5
Join Date: Jun 2011
Location: NY
Posts: 93
dganz HB Userdganz HB User
Re: Chronic Lyme experiences

Yes, I agree. Until some politician starts barking upwards, nothing will change and our LLMD's will always have to stay underground.

I will check out that book. Thanks

Old 10-05-2011, 07:14 AM   #6
Join Date: Jun 2011
Location: NY
Posts: 93
dganz HB Userdganz HB User
Re: Chronic Lyme experiences

Has anyone had IV abx for treatment? My doc said if I don't improve enough by next visit she has to change course of action. I realize LLMD must be aggressive in treating cause for me the neuro issues are most troubling.

If u have had IV abx what is it like and did it help? Thank you.

Old 10-05-2011, 05:11 PM   #7
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Re: Chronic Lyme experiences

Hi Dganz, I did IV antibiotics close to a year. I was in the dark about detoxing and supplements to take at the time. One of the antibiotics that I did was Rocephin. You have to be very careful with this one beings it is really hard on the organs. I had pancreatic attacks and gallbladder attack at the same time. Needless to say the doc pulled me off of that one. And I did a detox for my gallbladder and saved it...phew!
I did couple of other antibiotics ones but don't remember what they were. I did the pic line about 8 years ago.

Did they help? Well at that time it most likely was better to do them than not. I had done orals of different combinations with not much luck. After the picc was pulled I went back on different combinatioins of orals. And continued for 8 more years.

All you can do is try it. If you don't like it then have it pulled.

All any of us can do is to keep trying this or that. And see what works for each of us. It is not a one size fits all disease. Some people can do alternative and get it into remisson, some can do antibiotics and some need a combination of both.
Make sure to drink TONS of good water, try the hydrogen peroxide and Epsom Salt baths. If you can't do the baths then at least soak your feet to help pull out the dead bacteria.

I wish you luck in your treatment.


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dganz (10-06-2011)
Old 10-06-2011, 09:41 AM   #8
Join Date: Jun 2011
Location: NY
Posts: 93
dganz HB Userdganz HB User
Re: Chronic Lyme experiences

Thanks Jodie. It always helps when someone shares experience even though treating lyme is different for everyone. I think the most frustrating thing (once you find an LLMD) is getting the disease to stop. One minute you feel somewhat normal, then you feel sicker than before and think nothing is working.

Yes my LLMD did prescribe numerous supplements and 3 types of toxin flushes. Altogether I take probably 50 things a day. So I've had little backlash of herx. Just a few tollerable things. But the back and forth is the hardest. For example my inner tremor (I have alot of neuro stuff), was under control when I got up but by 11am, I all but this is the frustrating. These critters just don't want to go. I blame our government for not doing enough.

Thanks again for your reply, I so appreicate it.

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jojo (10-10-2011)
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