posted
My provider had run the Neuroscience MyLymeImmuneID test, and it was positive. Since I could find very little info on the test, I requested the western blot.
The IGM is positive even by CDC standards. I'm convinced now (I think?). I have two children who have medical issues, and I have been resolving them, step by step, with integrative medicine.
It's draining (emotionally and financially) when 3 of 4 family members have unconventional tests and treatments.
I've gone through 3 days of Alinia, 7 days of Tindamax, and I'm now on 300mg of Doxy. I had also been on Diflucan for two months and have switched to Sporanox. I take a number of vitamins and supplements, to the best of my daily organization/memory.
I'm curious about IV abx, but I'm uncertain if they are always nec., and it would be out of pocket. I just don't want to screw around with pills, if they aren't going to get the job done.
I know it will take time, but I hope to knock these critters out of me!
-------------------- Garden
"Fibromylagia" for 8+ years Pos IgeneX WB per both Igenex and CDC Pos Neuroscience MyLymeImmuneID Started tx for Lyme in March 2011 Posts: 245 | From East Coast | Registered: May 2011
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I and all of my friends (at least 5 people) got rid of lyme and company using orals only.
Not everyone needs IV to get rid of this disease, by any means. That is an old belief still held by doctors who don't know how to treat lyme disease.
And, IV doesn't guarantee a cure. You would still be taking various oral meds while on IV and after a number of months of being on IV. One med (even one IV med) is never enough to get rid of lyme and its coinfections.
Why spend an arm and a leg for 6 or more months of IV when oral meds will do the job for nearly everyone. If you were thinking one month on IV, forget it. That won't do a thing when it comes to this disease. Again, the non-lyme literate doctors are the ones that think this way.
This disease takes a minimum of a year to treat if you have had it for a number of months. And, the more educated you become about lyme, most likely you will see signs that you had lyme further and further back in time. Happens nearly every time!
For example, your 8 years of fibro were actually lyme disease. With good treatment, your fibro will go away totally. Happened to 2 of my fibro friends and 1 fibro acquaintance and my lyme doctor who had the fibro diagnosis for years and years.
So, you have chronic lyme disease. That takes a while to get rid of. Talking a minimum of 1 year and likely 2 to 3 years IF you go to a good doctor. I had undiagnosed lyme disease for at least 10 years.
Indications that IV is required are: bedbound, wheelchair bound, having seizures, total zombie (can't follow a conversation and barely talks). Doesn't sound like that is you.
On the east coast, we nearly all have lyme, babesiosis, and bartonella. Nobody has just lyme disease. Read it in Burrascano (see below). So, you will be taking orals for the babesiosis and bartonella also. You are not going to avoid oral medications. Each of these diseases is treated for months using a combination of medications, generally.
I suggest you read and STUDY the Burrascano Lyme Treatment Guidelines found here:
They are not an easy read because they were intended for other doctors to read, but they will give you your bachelor's degree on the disease that you have.
And, most importantly, many doctors treat lyme disease, but only a few know enough to get rid of it for a person. The doc is the key to getting rid of this disease. Can't stress that enough.
I and all my friends went to docs who followed the Burrascano Guidelines. In April, it was 6 years since I completed my lyme treatment and I am still symptom free, enjoying my life. Not many on this board can say that.
Why not contact lyme support groups in your state and nearby states (see Support Groups on the left side of the page) and ask for doctors who follow Burrascano's guidelines and who are known to have gotten people well from this disease.
You can also post on the "Seeking a Doctor" forum to get names. Personal recommendations are what really counts.
Wish you the best. Educate yourself as much as you can.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
TF, thank you very much for your detailed response and PM. I will reply soon.
I have read the guidelines a few times, watched Under Our Skin twice, and read through Dr K's protocol, etc. Though I am new to Lyme, I am deeply familiar (as a mom) with both the celiac world and the biomedical treatments for special kids world. There seems to be some overlap (from a holistic treatment perspective).
Currently, I am supposed to get my liver enzymes checked, and provided all is well, we will be adding Ceftin on top of the Doxy. I am open to switching LLMD's, so I will give careful consideration to suggestions.
Thank you!
-------------------- Garden
"Fibromylagia" for 8+ years Pos IgeneX WB per both Igenex and CDC Pos Neuroscience MyLymeImmuneID Started tx for Lyme in March 2011 Posts: 245 | From East Coast | Registered: May 2011
| IP: Logged |
posted
Hi and welcome - I am able to stop my fibro pain with oral clindamycin 150mg 1-2x/day. I have a 1981 west coast strain.
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
chiquita incognita
Unregistered
posted
Hi Garden WELCOME!!!! I loved your input on my other post about cutting chemical exposure in life...love your awareness and good mind....it will be nice to connect with you here and we all are looking forward to having you on board!
I am not like everdybody here because in fact, we *all* are different. Every one of us has unique physiology, and varying medical needs.
For myself, I had a severe backslide and side effect after taking bactrim, from which I am still recovering 4 months later. Oy. Again not everybody is the same.
My boundaries are firmly up, and I am not trying abx until I have done everything else I can first.
And I am doing so beautifully on the herbal product by Beyond Balance called Bar 1 (for bartonella) that there is no need for anything else right now. Except for detox herbs and some supplements, but not any need for additional therapies, per se.
Another person here uses these products and is really happy with them too.
I used to wake up with two fingers curled into the palm of my hands, asleep, and half my face numb/stiff/frozen, tongue faltering somewhat, other things.
After less than six months using just the herbs alone, no more fingers curled into the palm of my hands. In fact, I took a one-year break from the therapy and it still never came back. Much improved with other neuro symptoms like facial stiffness et al, but still more work to do. I am not cured yet by any means, and have additional layers of the onion to peel beyond what I am mentioning here.
Herxing has been very minimal and only moderate once or twice along the road. For the rest, herxing has been mild actually. Yet still such good results.
I really believe in the herbs and have every hope that they can do the whole job, at least for me. But I can't advise anybody else. I am not a doctor.
Increasingly I am thinking that not only to tackle the bugs, but to modulate immunity and keep the body strong are really important to fighting this disease. As I am taking herbs that bolster my immune system, I have noticed a lot more energy. I think this will help us to keep the bugs in check and to get well faster, as we also kill off the bugs.
My two cents worth.
Again this is not medical advice, only sharing my own story. I am not saying that nobody needs antibiotics.
I also think (very strongly) that given the wild rides that can come up with lyme treatment, we *must!* have medical supervision, whether we choose to go the herbal or antibiotic route solo, or both combined. I don't think self-treatment with herbs in lyme disease is at all wise. And we can make many self-diagnostic mistakes, treat the wrong thing, not know how to handle inevitable healing crises that come up...a doctor' s supervision is a must, period.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[bonk]](graemlins/bonk.gif)
![[Smile]](smile.gif)
Printer-friendly view of this topic