View Full Version : Anyone here have any experience with Lyme disease?
Happy Thanksgiving!
My daughter recently had some blood work come back and apparently she has Lyme disease. We have not consulted with the doc yet (Monday) but from what I am reading it is positive, this was the reason she wanted blood work done to begin with. My daughter is 4 and started pre-K this year and has been constantly sick. I believe the doc wants to do a three month course of Biaxin along with some grape seed extract to combat the Lyme and hopefully get her back to her old self. Also we visited an ent and he suggested a tonsillectomy as the illness she keeps getting is strep, 6 times in seven months.
My question is if anyone here has had it or any of the docs here have treated it what should we expect and when would we see an improvement? It seems macrolides can be rough on the stomach so we plan to look into a florastor type product to keep her gut healthy and hopefully limit the runs. Any opinions would be appreciated.
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Whiskey_Bravo
11-26-15, 18:23
I don't know much about it but it's my understanding is that it can be very serious so make sure do as much research as possible, push your doc to do anything needed and find a specialist if needed.
There was a women earlier this year in Oklahoma that was clinging to life and had her legs amputated due to lime disease so it can be very serious.
I had it in the early 2000's. I was treated with ciprofloxacin for for a little over 6 weeks, which left me with a nasty fungal infection. One thing I strongly recommend is that you make sure she takes a antifungal after she finishes her antibiotics to help put her system back on track.
One of the first symptoms I had was limb numbness/circ problems. I was extremely sick with it for several weeks, then got a little better for a while. I had no energy for months and I was out of work for a good while with it. I am not trying to make you worry as everyone is different, but I have not been the same since. I still have a lot of trouble with my limbs, especially my arms going numb and tingling. There is rarely a night where I do not wake up from that pain you get when a limb goes to sleep in one of my arms. I have never "felt" quite normal since having been bitten by that tick. It is a nasty disease. I was told once you contract it you will always test positive for it, so it is not like they can test you after a few weeks of antibiotics and say you are in the clear. Have her be straight up about how she feels. If she takes a round of antibiotics and still doesn't feel better, have the Dr's examine her. I was put on a 2 week course first, and 2 days after that last dose I was feeling the same as I was before I began the treatment, so I was put back on cipro for 4 more weeks.
I am extremely careful when I go outdoors July-Sept. That is supposedly the time locally that the deer tick is most likely to pass on Lyme. From my understanding, the sooner you can get on top of it treatment wise, the better off you are.
I'll keep her in my thoughts, and if I can help don't hesitate to hit me up. mclmminsc at gmail dot com
One of the mods here also had it as well...
Happy Thanksgiving!
My daughter recently had some blood work come back and apparently she has Lyme disease. We have not consulted with the doc yet (Monday) but from what I am reading it is positive, this was the reason she wanted blood work done to begin with. My daughter is 4 and started pre-K this year and has been constantly sick. I believe the doc wants to do a three month course of Biaxin along with some grape seed extract to combat the Lyme and hopefully get her back to her old self. Also we visited an ent and he suggested a tonsillectomy as the illness she keeps getting is strep, 6 times in seven months.
My question is if anyone here has had it or any of the docs here have treated it what should we expect and when would we see an improvement? It seems macrolides can be rough on the stomach so we plan to look into a florastor type product to keep her gut healthy and hopefully limit the runs. Any opinions would be appreciated.
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Might want to also discuss probiotics and ways to combat the likely diarrhea and probably yeast infections she'll get with that long of a course.
Daryl Hall has Lyme Disease and you can probably find some good info from checking him out. He's been pretty vocal about it trying to further education and cures.
From the experiences of two friends, I learned that Lyme disease is very serious. Thank God that your daughter's case was quickly diagnosed. I urge you to consult with specialists who have a track record of treating the disease. I understand that beyond a certain point in treating Lyme's, recovery is difficult.
In terms of probiotics I would take a look at inner-eco probiotics (http://www.inner-eco.com). We buy ours at Wegman's here in NY, but I know it's carried in places like Whole Foods as well. It's in the refrigerated section and cost about $15 for a bottle, which lasts 1 month. The berry flavor tastes pretty decent and I wouldn't think she'd have a problem with it.
From first hand accounts I know it's been extremely helpful in dealing with Chron's and Ulcerative Colitis and may benefit your daughter as well.
From the experiences of two friends, I learned that Lyme disease is very serious. Thank God that your daughter's case was quickly diagnosed. I urge you to consult with specialists who have a track record of treating the disease. I understand that beyond a certain point in treating Lyme's, recovery is difficult.
Well that's the strange thing about the whole situation. Awhile back, and I'm talking 1-2 years ago we noticed a red circle on her chest and thought it was a bite so we went to the dr and he said it was just a virus. Now that I am researching this it looked a lot like some of the bites that I find on the web. If that was it then she has had it for quite some time but being exposed to the germ magnets at school has really brought it out full force. She has been in great health up until school started this year.
I am pilfering through my old hard drives looking for the photo we took of it to show our new doc so I hope we saved it. I remember thinking that it looked li,e a bug bite but we never saw anything so we just assumed the doc was correct with his diagnoses. I hate seeing her so bad off because she loves school and loved gymnastics but we had to stop doing that because she was so tired. I feel like we let her down but as many times as we were at the dr no one ever thought of it until this new one we found that takes a medicine/holistic approach to treating children.
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Daryl Hall has Lyme Disease and you can probably find some good info from checking him out. He's been pretty vocal about it trying to further education and cures.
I will check that out, thanks.
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Eurodriver
11-27-15, 07:36
There is a moderator on here with Lyme Disease who knows quite a bit. I won't dime him out (he's posted openly that he has it before) because that is his place but I hope he comes in to help
If caught quick enough your daughter will make a full recovery. I have what is called 3rd stage Lyme and suffered some pretty nasty damage to lungs and joints from it. I'd be happy to pass on anything I can by PM as I've studied it for several years now along with my docs using me to gain info..... That's why it's called practicing medicine��
Nasty stuff. Many times missed despite tests. Can linger for years and cause irreparable damage. Even antibiotics don't always clear it, IF you know you have it.
Google "spirochetes." Did I say it's nasty stuff ?
Good read here
http://www.lymenet.org/BurrGuide200810.pdf
Good read here
http://www.lymenet.org/BurrGuide200810.pdf
That is the exact pdf that the Dr gave us today. She expects a full recovery and we are doing amoxicillin instead of the biaxin as my daughter has tolerated that very well in the past. She will also be taking grapefruit seed extract as that is supposed to be good to bust the cyst form of lyme. Some vitamin D and B1 round out the regimen.
On another note, after reading a lot over the past week or so I get the feeling that the CDC is really underestimating lyme disease. I have no real proffered of that nor have any idea what their motive would be to do so but it is just a feeling I have more than anything.
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Robb Jensen
12-01-15, 11:09
Thanks for the members here who brought this thread to my attention. I like to help anyone with this disease mostly because the mainstream medical community failed me. To me they only thing mainstream medical is any good at is emergency medicine. Frankly they suck at disease management, prevention and nutrition, total failures. Sorry to hear that your daughter contracted this awful disease, I pray that she recovers fully. I tested positive via the ELISA test on June/July of 2013. I did the standard protocol of 30days of doxycycline. Antibiotics helped a little. Then the infectious disease Doctor basically said there's nothing else they can do. Never did she discuss nutrition or how to boost my immune system naturally. This is the kicker Lyme and accociated vector borne diseases aren't covered by healthcare insurance past 30days unless you have Bells Palsy or Lyme Cardidtis. They'll go after Dr's medical licenses for treating beyond 30days (much like how they treated AIDS patients in the mid-80s). If you want further testing I'd recommend looking for a LLMD (Lyme Literate Medical Dr), you have to find a private group there's a ton of them on social media and ask Lyme patients won't share the Drs name pubically but will send you a PM/email. These Dr's don't take insurance. Testing is VERY expensive the 2 you'll want to look at are the Western Blot and PCR. And after 30day of doxycycline the bacteria have gone into biofims and cysts and are now antibiotic resistent. The CDC/IDSA have basically said that Lyme is cured in 30days with doxycycline (which is total BS), essentially it's not a disease until they have a vaccine for it. Which is interesting since the closest 'like' disease to Lyme is Spyhillis. After that meeting with the I.D. Dr. went south I started researching alternative treatments etc. I then started a 9mo herbal program which put my Lyme into remission. It's called the Cowden Support Program (from Nutramedix). I also changed many other things to support my immune system, CUT ALL things that cause inflammation in the body. Inflammation is the root of ALL disease. I use plant based natural laundry, hand, shower soap, shampoo and dishwashing soap, natural deodorants (no aluminum), no fluoride natural toothpaste. 120oz of filtered water daily (I use a ZEROwater water filter), lots of herbal supplements, juice of one lemon in that water, only organic non-GMO foods, only grass fed pastured meats (bison, elk, lamb), pastured free range chickens and eggs, raw milk. Only ocean caught fish (never farmed) only nitrite/nitrate free organic bacon, good probiotics from a company called KeyBiotics. I also had a co-infection called Bartonella (aka cat scratch fever). I used a sauna almost daily for 40min a day (20min in, 30 out , 20min back in). This kills the Lyme and Bart and detoxes the body well. In 20min of sweating you clear out what would take your kidneys do in 24hrs. I also treated Bartonella with essential oils on the bottoms of my feet twice a day (oregano oil, frankincense and thieves oil). I also ate lots of fresh raw garlic (crushed and swallowed with water 6-9 cloves a day). Garlic is an excellent antifungal, antibiotic and stops the "quorum sensing" ability of the bacteria to communicate and that way the immune system can kill the bacteria, it also keeps the bacteria for forming into cyst and biofims (protecting themselves). I cut all processed foods and sugars. Sugars feed the bacteria. I now believe antibiotics aren't the best way to treat Lyme, as they say "A WAY, not THE WAY". I also use lots of turmeric and ginger (for anti inflammation), coconut oil, raw apple cider vinegar. I have a protein shake daily with a scoop of Green Vibrance daily. The diet I follow now is called the BALi diet by "Dr. Fitt" aka Dr. Roby Mitchell. I can go on and on for days talking about this stuff. Some things I recommend watching in your research are the movies "Under our Skin I & II", and a book by Dr Horowitz called "Why can't I get better" and all of th 3 videos on YouTube of Dr. Alan MacDonald. PM me or email me (robbjensen@comcast.net) if you have more questions my hobby now is constant research and immune system research. My Lyme and Bart are now in total remission but this time last year I did develop a Dysautonomia in the form of hyper-POTS (caused by the Lyme infections) and that is now about 85% better (almost unheard in under 5yrs of diagnoses).
Happy Thanksgiving!
My daughter recently had some blood work come back and apparently she has Lyme disease. We have not consulted with the doc yet (Monday) but from what I am reading it is positive, this was the reason she wanted blood work done to begin with. My daughter is 4 and started pre-K this year and has been constantly sick. I believe the doc wants to do a three month course of Biaxin along with some grape seed extract to combat the Lyme and hopefully get her back to her old self. Also we visited an ent and he suggested a tonsillectomy as the illness she keeps getting is strep, 6 times in seven months.
My question is if anyone here has had it or any of the docs here have treated it what should we expect and when would we see an improvement? It seems macrolides can be rough on the stomach so we plan to look into a florastor type product to keep her gut healthy and hopefully limit the runs. Any opinions would be appreciated.
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Robb said it better than anyone else could. I had not intended to say this, but now have decided to do so. Both friends died from this, and one was a six year old girl.
I will research the web and try to locate medical center research/treatment centers that focus on this terrible disease. Right off the bat my guess is that medical center programs will be more lenient and forgiving on fees.
Original poster, please pm me with your city and state and give your permission to research this for you. I have an earned doctorate, and at one time I was an excellent library based researcher. I'm still good and am willing to devote unlimited hours to this project. I need only your go-ahead.
I'm at work so I do not have time for a lengthy reply but I came across this at lunch and found it interesting.
http://bangordailynews.com/2015/03/16/health/maine-lyme-disease-sufferer-endorses-regulatory-relief-bill/
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Finished the first 10 days of the antibiotic and she seems better in some ways and still not herself in others. Doctor put her on amoxicillin and grape seed extract along with a probiotic. The gee acts as an anti fungal as well as kills the Lyme cyst. We are transitioning to a gluten free diet which is a chore for a 4 year old. We have completely cut out dairy and are using almond milk which she seems to like. We are only doing 3-day weeks for her school and she is napping for about two hours after she comes home so the fatigue is still there.
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After much time dredging through all the photos my wife takes I finally found 2 with the mark I remember. Knowing what I know now I would have demanded a Lyme test back then, these were taken in the fall and winter of 2013. The one in the fall is harder to see but it is the more typical "bullseye" mark that turns into the red rash looking spot in the later, more visible mark.
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SeriousStudent
12-21-15, 20:11
Adorable daughter you have there. We'll keep her in our prayers. I hope you and your family has a merry Christmas, and wishing her a full recovery in the new year.
Adorable daughter you have there. We'll keep her in our prayers. I hope you and your family has a merry Christmas, and wishing her a full recovery in the new year.
Thank you and Merry Christmas to you and your family as well.
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