Igenex all negative except band 41 is IND

[sptcmom]

Good then you will one soon. My kids were always negative too but they had coinfections because they responded to the treatment. Let me know how you like him!

HUH???? Thats just bizarre. wow! really?! So even though Igenex is the best lab for lyme testing, a lyme doc can still treat for coinfections? An abx like Mepron for Babesia can be used for other conditions so how does one know its treating coinfections? That would be a HARD decision to make- labs negative and still treating with toxic meds. I wouldn't mind if the tests were positive- gotta weigh the benefits v/s risk. I mean Tindamax has a heavy cancer risk but it is widely used if needed.

Thats just plain SCARY........

[KeithandElizabeth]

My IGENEX test was negative for bartonella, and yet, my doctor does the muscle testing and said that I did have bartonella. He put me on 2 antibiotics for 4 months and all of my thigh cramps (which I thought was sciatica) and my eye twitches went away. The problem is that there are MANY strains of each of these bacterias/parasites and the coinfections test does not check for all strains. I believe I had the bartonella strain from fleas from my dog versus the bartonella that you can get from TICS.

 

Anyway, I am glad that you are keeping your appointment with Dr. J!

 

Elizabeth

[smartyjones]

got RLS at night,

 

sptcmom -- can you tell me what the RLS appeared to be to you?

 

i ask b/c my son still seems to be going through some type of herx-like reaction. it was wicked a few weeks ago with intense contamination OCD we've never seen before. the worst of that (complete non-eating) seemed to go away as strangely as it came. he seems to be doing some sort of cycling of behaviors - but seems to have some more insight into them - or maybe i've gotten better at dealing and trying to uncover.

 

the past few days, he's been kicking my seat in the car. this was one of his troublesome behaviors at onset. today he said he had to do it b/c he had to stretch his legs. it's one of those things where you question if it's obnoxious behavior or what's at the root of it. it doesn't so much seem like a tic or complusion, but he keeps doing it. could it be some type of RLS that sitting in the car seat bothers him?

 

thanks for thoughts.

[sptcmom]

got RLS at night,

 

sptcmom -- can you tell me what the RLS appeared to be to you?

 

i ask b/c my son still seems to be going through some type of herx-like reaction. it was wicked a few weeks ago with intense contamination OCD we've never seen before. the worst of that (complete non-eating) seemed to go away as strangely as it came. he seems to be doing some sort of cycling of behaviors - but seems to have some more insight into them - or maybe i've gotten better at dealing and trying to uncover.

 

the past few days, he's been kicking my seat in the car. this was one of his troublesome behaviors at onset. today he said he had to do it b/c he had to stretch his legs. it's one of those things where you question if it's obnoxious behavior or what's at the root of it. it doesn't so much seem like a tic or complusion, but he keeps doing it. could it be some type of RLS that sitting in the car seat bothers him?

 

thanks for thoughts.

Hi

My Ds has had RLS since about 22 months of age. Up until August 09 he used to wake up every couple hours, lots of tossing, turning, kicking etc in bed during sleep, very poor sleep for both of us. I didn't know it was RLS then. Long story but we thought it was Aspergers when it was really the sudden onset of Pandas like Dr K explained to us.

August 09 he developed in addition to above, bad muscle spasms- I mean he would wake up with one of his legs in a bad charley horse- shuddering. I would massage , stretch, use biofreeze and that would help him sleep again.

After his Ferritin level stabilized that went away in March. We stopped iron supplement and it came back on august 7th 2010. he's better now as I've been OCD about the iron with him.

My DH has horrible RLS during the daytime- one of his legs is always vigorously shaking.

Jodie

[lyme_mom]

That's how the coinfections are usually diagnosed- clinically. That's one of the many frustrating things about Lyme/coinfections. There are currently no reliable tests for coinfections and even the igenex test for lyme can be wrong.. There are so many strains of Lyme and coinfections that you could get a negative result and still have it. The only other disease that I know of that Mepron treats is malaria. A knowledgeable Lyme doc would be able to ascertain if the treatment is working within a month or two. These diseases are so common especially if you know you have one tickborne illness (which I realize you do not know). I was treated for Lyme for five months, went off the antibiotics because I was better and got very, very Sick within two months. My doctor suspected babesia and treated me for that. I had some thigh cramps and severe fatigue(another sign of babesia). I felt worse initially as it killed the bugs but then I finally got better. I kind of wished we had hit everything from the beginning so I didn't have to go through what I went through. I was skeptical initially too- how can they assume all of these diseases are present but I learned that nobody has just Lyme anymore. You have to have faith that the Lyme doctor knows what he is doing or get a second opinion as you are doing. Once I became very knowledgeablesbout the symptoms by reading all kinds of Lyme books I realized I had babesia symptoms for several years: fatigue that would come and go which I assumed was just how a busy mother of three was supposed to feel ( wrong). I also has a week long episode where I couldn't get enough air several years earlier. My doctor told me i had asthma but I knew that wasn't right. Never had a breathing problem my whole life! In retrospect it was spring and I was gardening a lot. It must have been when I got babesia. It went awY but years later when I got Lyme it made me much sicker (coinfections do that). Usually they don't start you with tindamax especially if they are not sure whether you have Lyme. Amoxicillin, rifampin, mepron, bactrim, doxy, are some if the drugs they use and they are considered safe. I will be very interested to hear what dr jones says!

[MichaelTampa]

As Elizabeth mentions the muscle testing, I also had a positive experience with that. My NAET practitioner had vials for lyme and the coinfections. I tested as "allergic" to bartonella and lyme, with bartonella being the stronger bad response. I treated with abx and herbs, and the herbs for bartonella and lyme overlap some, so it's hard to know what you're treating with what. But, point is, if you look just at symptoms and response from treatments, you'd conclude I had lyme and bartonella. Then, if you look at all the various tests I've taken with the semi-conclusive results for lyme, and negative results for bartonella (yes, through IGeneX), it looks like the muscle testing shined through as the best test I took.

 

Michael

[sptcmom]

As Elizabeth mentions the muscle testing, I also had a positive experience with that. My NAET practitioner had vials for lyme and the coinfections. I tested as "allergic" to bartonella and lyme, with bartonella being the stronger bad response. I treated with abx and herbs, and the herbs for bartonella and lyme overlap some, so it's hard to know what you're treating with what. But, point is, if you look just at symptoms and response from treatments, you'd conclude I had lyme and bartonella. Then, if you look at all the various tests I've taken with the semi-conclusive results for lyme, and negative results for bartonella (yes, through IGeneX), it looks like the muscle testing shined through as the best test I took.

 

Michael

Thanks a million you guys. I have so much of a clearer picture. I think I can now make an informed decision whatever Dr Jones suggests. It will be a VERY hard decision to say yes to RX for lyme when all the tests are negative. I will keep an open mind. Anything to bring little DS to 100% again poor little guy.