New Member-need help

Welcome to our forum frances57,

Sorry you have these infections , many here also have them so you have come to the right place.

There are understanding and caring members here to offer support and help answer questions.


We encourage all new members to read our"New to Lyme"start here thread at the top of the page.

It has useful and important information about Lyme and co infections, treatment, symptoms, detoxing, testing and much more.

If you would like to find an llmd here you can by enabling your email and then re posting saying"seeking an llmd in your area".

You can also go to ilads.org and request a list of llmd's in your area.

I'm not the best at answering about testing results but others here are and may be along to help out with that. Just check back in case they are not available to answer tonight.


about the herbals... you may be herxing from them. Which is when you kill bacteria/infections and the die off toxins can increase your symptoms.
If using tinctures and any herbal always start with one at a time and only 1 to 2 drops to see how you react to them. That way you know which one gives you a reaction.

It is best to start slow and build up with tinctures/herbals.

There are members here who have healed with herbal protocols and no abx.

It is important to detox, Epsom salt baths, dry brushing, drink lemon water, sauna.

well take care and I wish you the best of healing, Jo

Post Edited (goshawk) : 8/29/2017 6:33:16 PM (GMT-6)

Welcome, Frances57!! You came to the right place. If you grew up in the 70's, we must be close to the same age. I'm so sorry it's taken you so long to make the connection between your symptoms and Lyme.

I did have a DNA Connexions urine test and mine came back positive for borrellia and ehrlichia. I'm not an expert on the validity of the various forms of tests, but I do know that DNA Connexions is a PCR analysis, which is DNA. If you have a positive result, my doctor said it was 100% accurate. If you do not get a positive result, it does not eliminate the possibility that the infection is there. It simple means it was not found in the sample that was tested. My Elisa, Western blot, and Igenex tests were all negative. I did have some positive bands on the Western blot and Igenex, but not enough to get a positive test result on those. I'm very glad now that I did the DNA Connexions test.

I couldn't tolerate antibiotics, either. I'm using Stephen Buhner's herbal protocol. He has 3 books on Lyme and the various co-infections and there's more information on www.buhnerhealinglyme.com.

I am very sensitive, too, and have to start at very tiny doses of the herbs. I started the herbs almost 3 months ago and am trying to add one new herb each week from the bartonella protocol and slowly increase the dosages as I go along. I started with bartonella because I felt like most of my symptoms were related to that. I am starting to feel better and am making some progress. Detoxing is very important, especially if you are sensitive.

YES, I believe you can recover even at this late stage and without antibiotics. Others have, and I'm believing I will, too. You might find some encouragement from these folks' recovery stories:

http://realfoodrebel.com/success-with-buhners-protocol-for-lyme/

https://rawlsmd.com/health-articles/my-chronic-lyme-disease-journey

(sorry. I can't seem to get the hyperlinks to work right.)

Post Edited (WalkingbyFaith) : 8/29/2017 7:10:12 PM (GMT-6)

Sorry to hear you're sick Frances57.

* Are you working up on the herbals? It's recommended that you only add 1 new herbal once you've adjusted to the last and know how you're responding. Also work up the dosage for example start with 1 drop X times a day and add +1 drops a day. Herbals like antibiotics can knock you on your ass if taken full dose from the start.

* A lot of people swear by Buhner

* Good Dr's in New York area have long waiting lists but here's a few
- Dr Raxlen in NYC
- Stram Center
- http://nycim.com

You can find Dr's that are much easier to get into outside of New England if you're able to travel to kick off all the testing while you wait for one in your area like Envita, Hansa, Pacific Frontier Medical, etc. They'll do a great job of running all the tests you may want and can talk about how you get started on herbals today.

Good luck!

frances57 said...
Hello'
Grew up in CT in the 1970's and then LI. Have swollen glands for over 35 yrs progressively worse and many symptoms listed fit me. Have also type 1 diabetes and complete intolerance to most meds docs have never heard of my intolerances/allergies with hives sometimes even to the insulin that I must take to survive. Nurse practitioner on west coast I have spoken with was suspicious I have longstanding Lyme especially because of where I grew up CTand the swollen glands that torture me for these many years withflu-like symtoms -always considered myself a chronic fatigue syndrome victim Lyme tests also negative over the years
Recently took DNA Connexions urine test on my own and it showed co-infections to 2 types of babesia and Ehrlichia but Lyme itself{Borrellia} did not show positive the way the co-infections did
Does anyone know about this type of test and accuracy? Also blood tests have shown positive for Epstein Barr and HH6 but docs say most people have positive to these viruses.
Have just tried Woodland Essence protocol as per nurse but can't tolerate after 2 days-very ill as I also get from almost every med I have ever taken; Does anyone have a recommendation for an accessible Lyme physician in NY area or CT. I would very much appreciate any feedback or suggestions to anything I have mentioned - thanks
Also cannot tolerate any antibiotic at all get very very ill from all of them- can I recover at this late stage with or without them? am already taking many Lyme helpful supplements which I seem to tolerate ok but not tinctures-only tried those for 2 days but feel awful-please any suggestions

Hi Frances, welcome!

You can email me and I'll give you names of LLMD's in NY/CT.

The tinctures you tried - what were they specifically? And, did you try only a drop or two at a time? Many people have to start out very low and increase slowly.
Maybe you need to buy alcohol free tinctures.