posted
So I thought I'd ask all you smart folks what you think I should do...
Spent the week running the gamut of treatment options for my 11 year old son likely infected in 2004 (EM rash after camping), ongoing health problems, pain in knees, feet, headaches, dizziness, confusion, pain under ribs, eye pain with floaters and flashing lights, swollen lymph nodes,and more: In Feb of this year came across lyme info and now believe that this is what is happening for him.
Tuesday we went to holistic clinic where he is being treated with photon treatment, he is responding well and is feeling much better, but still very sick especially weakness/pain in legs.
Wednesday we went to Children's hospital for our appointment and spent five hours waiting around to be told it's "all in his head, lyme doesn't exist in our area", and a flat out refusal to run the western blot test because it "could result in a false positive that would put ideas in our heads". We were told all he needs is a good psychologist.
Thursday we paid privately to see a U.S. doctor who said that in his opinion our son very likely has lyme and that he is particularly concerned with the leg weakness and recommended abx immediately. The doctor is well versed in alternate therapy, and said photon is a good treatment, but he is worried that it's not "getting deep enough"
I'd love to hear peoples opinions/advice. Should we take a break from the photon treatment and do a round of abx?
Thanks so much for your help, it means the world to have people with experience in this type of thing to talk to.
Posts: 372 | From british columbia | Registered: Feb 2012
| IP: Logged |
posted
Thanks I posted in this area by mistake.
Posts: 372 | From british columbia | Registered: Feb 2012
| IP: Logged |
t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Hi canadianmama:
Your son's symptoms sound similar to what our daugher had and yes we had the same run around. We paid the out of pocket ($533 for one two weeks ago) for Igenex to test for Lyme and Babesia.
Our daugher has never tested positive but she has had positive bands (30, 34, 39, 41) just never at the same time or the same antibody (IgM or IgG) to qualify for Igenex positive (plus an indeterminate).
We were more fortunate in the sense at the 6th month into this the pediatric IDSA MD indicated the symptoms were psychosomatic. This is when I started researching and realized there is a controversy with the diagnosis and treatment.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
| IP: Logged |
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
In my opinion as a mother of 2 boys with Lyme, if I had known, I would have treated agressively with both prior to puberty hitting and making the disease so much worse.
Young kids have a good chance of beating this disease. Read Burroscano's Treatment Guidelines to better understand all that it will take to fight the infection and coinfections.
Best wishes to you and your family!
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
| IP: Logged |
posted
So would a antibiotic help for the co-infectors?
Strangely enough, the Children's hospital was willing to run a few co-infector tests (including babesia). I was told that babesia is very hard to test for?
We have received the Ingenx package from the U.S. doc. not sure if we should send off for the test. The Canadian Infectious disease doc said that Ingenx NEVER give negative results and that they are unregulated, so test results would only be for our own info, not to convince the docs to start treating him here.
My son also seems to struggle a with detoxing so I'm hesitant to do bionic and abx.
A third option we are considering is to add a non pharma abx that has worked for his symptoms(before suspected lyme) and the bionic.
What are the general treatments for co-infectors?
Thank you all again for your time in helping us figure this out!
Posts: 372 | From british columbia | Registered: Feb 2012
| IP: Logged |
posted
Each coinfection needs different medications/antibiotics. Many labs are unable to pick up the infections. So you MUST find a good LLMD who can figure out if treatment is needed, regardless of test results.
MANY have had NEGATIVE Igenex test results and still had LYME. I am one of them and I am now well!
Do not cheat your son!
Order the test!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
posted
Okay I'm a little confused, I should get the Ingenex test, but a negative result may not mean that he is lyme-free?
Posts: 372 | From british columbia | Registered: Feb 2012
| IP: Logged |
posted
Any opinions about if bionic would cause a problem for testing?
I've heard that abx need to be stopped for two weeks to test?
@ktk, I think it may be possible that the onset of puberty was one of the reasons his symptoms have become so severe over the last 18 months, as he has grown 4 inches and is almost 12. How old were your boys when you started treatment please?
@Tim, yes when the children's hospital docs started saying it was in his head after ordering no tests and doing only a basic check up I realized there was not going to be any help for us there. Only pressing the doc got us a meeting with the infectious disease doc who within 1 minute started saying that "THIS ISN"T LYME"
So confusing.
Posts: 372 | From british columbia | Registered: Feb 2012
| IP: Logged |
I hadn't thought of getting him muscle tested that is a good idea, as I know a person who does that. Give us one more way to find info.
I'm worried about babesia, in particular, as he has lost muscle mass and has "tippy dizzy-ness" both I've heard are indicators, but he does not have sweats at all.
Posts: 372 | From british columbia | Registered: Feb 2012
| IP: Logged |
posted
I have read there are no Lyme-literate doctors in Canada. Is your son being treated now or has he been evaluated/diagnosed by a Lyme-literate doctor? I would get him to one a.s.a.p.
It took us 6 YEARS to get a correct diagnosis and my son started getting better with treatment. We were also told by the non Lyme-literate doctors the "It's all in his head, he needs psychiatric inpatient treatment" nonsense. That's a standard line when they have no clue about this horrible disease!!
Posts: 8981 | From Illinois | Registered: May 2006
| IP: Logged |
posted
After a month long wait, during which time we found a clinic doing photon treatment, we got in to see a LLMD here in Canada.
He has "opted out" of our medical program in order to have freedom to treat "in our head diseases, like lyme, and fibermyalga. He was able to find subtle signs of lyme in my son too, like tooth decalcification caused by vit d and more.
He gave us a trial abx. We are just struggling to decide if we should pause the photon treatment to do the abx, as I think both would be too much.
Our son is responding well to photon, has gone from completely bed ridden and very uncommunicative to scooting about in a wheel chair and acting much more like himself. It's been three weeks of photon, but as we are travelling 3 hours to get treatment we have been on a slightly drawn out treatment schedule
Posts: 372 | From british columbia | Registered: Feb 2012
| IP: Logged |
posted
You can not do both photon and abx, it is either one.If he is doing better with photon, maybe you should continue for at least a few months, to see where it takes you.
Abx is not always a panacea, you see, after 2,5 years of abx+ anti-protozoans treatment, I'm going to GERMANY TO DO THE PHOTON TREATMENT. You are lucky, that you have one right next to you.
The only thing with photon, it seems that it doesn't work on protozoan, so if your son has it you will have to address it separately after Lyme and Bartonella, plus maybe other identified co-infections that will be gone.
Or (like it happened before with others) protozoan can go dormant after Lyme is gone.
I would do the test for co-infections and still do photon treatment. Which photon device are they using, which nosodes?
Posts: 443 | From Montreal, Canada | Registered: Oct 2009
| IP: Logged |
manybites
Frequent Contributor (1K+ posts)
Member # 33750
posted
Be careful .It seems that your son has babeisa or FRY Fl1953 bug.My son that has babesia ended up to a neuropsykyotrist and was told is all in his head.
He had week legs and head preassure .So did I .Only the combo on babesia treatment got rid off it.
Be careful to not delay on babeisa treatment.bartonella and activated babs make the muscles to loose tone and volume.
I lost muscles of my thighs from bartonella and babesia.Both were activated and I was sick near death.Bedriden.I am still fighting after 3 years.On and off with antibiotics.
I did not know about lyme disease.The sooner you treat the better.
Photons did not kill babesia in my case neither bartonella .I had to use HERBS and antibiotics for them .Homepathic formula did not eradicated them either.
They came back after the car accident.
Posts: 1379 | From disable | Registered: Aug 2011
| IP: Logged |
posted
Manybites, I have used abx, herbs, homeopathic, Rife to treat Bartonella and Babesia. I still have it. It is diminished but never got eradicated.
So , with Lyme disease it is hard to tell what is going to work in each individual case. One type of treatment for sure will not work. If you only going to take abx it might take you to 80 %, but this is not what we al want.
And if I'm not wrong from your posts before, you and your son only had 3 weeks of photon treatment. it is proven , that it is not enough to control the infection for good.
It took Six and 17 hens 5-to 9 months to get read of Lyme and co-infections with photons.
By the way there are people who get rid of Lyme just with Marshal's protocol. In my opinion do what ever works and when it works, continue to do it until you get 100%.
Posts: 443 | From Montreal, Canada | Registered: Oct 2009
| IP: Logged |
posted
We have had a similar run around. We avoided ID doctors from advice here. My daughter has never had a positive test, but reactive band 23 has been the clincher. Tested through Quest and Igenix. No positive tests for the usual coinfections, but tested positive for Q Fever and FL1953. Diagnosis is clinical, along with tick bite and above results. It is not in your head!
We have no experience with photon treatment. Have been on abx for 9 months with slight improvement. Don't know how to advise you, but wanted to lend my support.
Posts: 312 | From Utah | Registered: Nov 2010
| IP: Logged |
We have decided to stick with photon treatment form the next few weeks and if we continue to see improvements we will continue.
I'm worried about babs because of the weakness and muscle tone loss and are researching a appropriate action to take in case that's whats going on.
Goodness how I wish the testing was more accurate. The worry in making treatment decisions is terrible.
Thanks again for the conversation. We're off for a couple of days to travel for treatment again.
Posts: 372 | From british columbia | Registered: Feb 2012
| IP: Logged |
posted
But if his test from Igenex shows Lyme, he has it.
Be safe on your travels! I hope he continues to improve!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
manybites
Frequent Contributor (1K+ posts)
Member # 33750
posted
I bought the Bionic and collected all the homepathic formula over the world for every strain of borrelia .I bought 2K of nosodes in germany and brought them home.
I collected everything for every coinfection.I treated for months when I came back .
I need to exsplain you that the BUGS that are at lymphotos.com ( I had the borrelia garini ) sack will not be killed by photons they are too large.
Check the picture.I saw them in liver flushes while did parasite cleansings.
As far as bartonella ( I reduced it ) and I put it in remission .With babesia Microti ( you can not kill it with photons either) .
I do not find Bionic to kill all the coinfections.
I reduced with nosodes as much as I could but I could not eradicate any of them .
The car accident that I had while I was in Bionic treatment brought up babesia and FRY Fl1953 stronlgy and in a month I was fighting for my life.
I still felt I had lyme after 3 months of the car accident .
In my case when you have had it for Very long and you have all the coinfections activated and the lyme activated , you can not rely on bionic only.
I actually got worst from OZONE since in germany that woke up babesia in ME and MY son that actually treated babesia before me but activated it because we used IV OZONE.
Since than my liver almost killed me and I was in Pain from it followed by the car accident .
My Rbc went so low I had to take blood transfusion .I confirmed with the Well known LLMd that I had babesia after I got out of the hospital and my bionic did not kill it..in spite of 3 years in artemisin , short period of Mepron .
So far my babesia has been controlled by Mepron , Boaxin , plaquinil , cryptolepsis.After 6 months on it I finally had days that I did not sweat at all .I have had it for very long though.I am far from well.
Fl1953 is bad as well.
Posts: 1379 | From disable | Registered: Aug 2011
| IP: Logged |
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!
![[Smile]](smile.gif)
Printer-friendly view of this topic