Need direction. Is new Lyme culture helpful in our situation?

Hi, I am new to this forum. However, I have been searching for answers to my daughter's health issues for eight years or so. She has had many of the symptoms of lyme, especially the neurological ones, but no problems with joints or remembrance of a tick bite. She has lived in Virginia, Arkansas, Colorado and Kansas and visited many places, including France, South Africa and Central Africa. Among other symptoms, she has been greatly bothered by depression and anxiety, sleep problems,fatigue, etc. These symptoms have been debilitating in her education, work and future plans.

Test results from Igenex: Sept. 2014

IGM Western Blot Igenex and CDC POSITIVE 23-25, 31, (34IND), 39, 41, 58, 66, (83-93 IND).
IGG Igenex and CDC negative, with 39 IND and 41 bands present.
POSITIVE lyme IFA

Tests from SUNY Brook, Columbia Univ. Med Center: January 2015
Lyme WB IgM result POS bands, 39 and 41
IGG 41 IND only, therefore negative.
PCR for lyme, bartonella henselae and quintana are NEG
C6 Qual result NEG.
Lyme index .14

Dr. F and Dr M concluded "consideration of Lyme disease quite reasonable" due to all of the testing and clinical evaluation.

After this, she had "rife" treatment and had great improvement. He said she had lyme in the spleen (lymph system) and mycoplasma co-infection as well as many viruses in the brain area.
Immediately after this she received 4-6 weeks of 100mg BID Doxycycline from her local doctor with only a little more improvement.

Now, she is still better, but still has a good amount of anxiety and fatigue to warrant almost a daily nap. She is unable to work in her field of training (medical).

At this point, because many of her doctors have verbalized to her that this is a matter of mind over body/situation, she is convinced that she must just work through this. She doubts that she really had lyme because of all the ambiguous testing and interpretations.

Here is my main question...would it be worth doing the new culture with 4 month extention to see if the IGM has converted to IGG positive? I feel that if we just knew what it is exactly that we are fighting, it may make our goals clearer. Are there any other suggestions? Should we re-do co-infection testing?

My daughter is so ready to get on with a normal life. There certainly is not much written by people with the neuro-lyme. I think there is too much stigma for people to want to open up and share those experiences. It makes it look as if you HAVE to have the typical bullseye rash and swollen knees, to have lyme or co-infections.

We would so appreciate any input you all have on what direction to go next with all of this. Thank you SO MUCH.

I'm sorry - I didn't welcome you to our community! I got caught up in the story and wanted to reply before my iPad battery died.

It's great that you are helping your daughter by researching.

This is a great community of supportive, knowledgeable people. I hope we can provide you with answers that you need to help your daughter as it looks like she needs treatment with a LL Dr.

Thanks for the welcomes! We are in the Mid-west and almost nobody is here to treat lyme and co-infections. We have not seen a LLMD, as we were hoping the Rife treatment would take care of it. It was very helpful, but I think it needs to be done repeatedly to get the different stages and forms of the bacteria. We are thinking of getting our own device, as it is so expensive to travel so far for the treatments.

We have seen a naturopathic doctor, but he, too says that because the IgM did not convert to IgG, it was just a false positive. The Columbia doctors did at least say that "consideration of Lyme was quite reasonable." Traveler, we have not tested her adrenals lately, so maybe that is a good first step. The test I mentioned in an earlier post IS the one from Advanced Labs (by Dr. Burrascano). I would love to hear from anyone in the forum who has used this test and any thoughts on its usage.

Traveler, I also noticed that you used only herbal treatment, and no antibiotics? I have thought about using Buhner's protocol. My daughter has used many supplements to help her immune system and followed a strict gluten, dairy and sugar free diet for a few years. However, it is not the whole answer... My daughter is looking into treatments for obsessive anxiety, such as amino acid deficiencies, etc., but I think the root cause may be something deeper, which if we could clear up, would take care of the moods, anxiety, etc.? Again, could use a diagnosis... Thanks for thinking about this...

I have late stage neurolyme and it is not fun. Essential oils have been pretty effective for me as they cross the blood brain barrier easily. The Buhner and Cowden herbal protocols are also good.

If she's responding well to Rife it's probably worth getting your own machine. You do need to use it at least several times a month to make progress. I've made a lot of progress with this new one, Spooky2 - www.spooky2.com/ It's only $~170 with shipping so would pay for itself pretty quickly vs. paying per session.

You need a windows computer and then just these two additional pieces:

www.spooky2-mall.com/index.php/spooky2-generator/spooky2-5m-5-mhz-generator.html
www.spooky2-mall.com/index.php/spooky-accessories/spooky-tube/spooky-tube.html

Ugh, there is no such thing as a false positive Lyme test! "We have seen a naturopathic doctor, but he, too says that because the IgM did not convert to IgG, it was just a false positive."

That is just completely untrue.

It boggles my mind that so many of them think that. It doesn't even make sense. How would a test be a false positive if it is looking for specific antibodies?

hey project, i've noticed your posts about the spooky 2 machine, how has that been going for you?