Thu, 01 Aug 2019 22:21:14 GMT
Sorry for a rather long post but want to set background before asking questions..
We are in Canada and my wife (aged 62) was diagnosed with ALS about three months ago and has been on the Deanna protocol since then. The diagnosis was very quick. From initial neurologist consultation to diagnosis took about 6 weeks. Diagnosis was based on nerve conduction tests, spinal MRI (did not include brain) and some basic blood tests. Since blood work and MRI results were good, the diagnosis of ALS was the default even though the neurologist report stated that she did not meet the typical criteria. No brain MRI, muscle biopsy or CSF testing was carried out.
Since diagnosis, my wife has been doing weekly physiotheraphy to strengthen muscles, and has also been getting some acupuncture. She has not progressed, and the physio has said that she is stronger now than when she started. At the moment she can walk short distances unaided, but has trouble climbing more than a few stairs due to leg weakness. Her main symptoms are related to chronic fatigue, weak leg muscles, drop foot in her right foot and some weakness in her left hand. Her speech is fully intelligible although it shows some change (not typical of ALS, just sounds a little coarser) since a strange un-diagnosed viral throat infection she had in November last year. She also has a need to clear her throat often in the morning and evening, ever since the viral infection. A recent swallow test showed up normal however.
We have been seeing an ILADS registered naturopath in our area and have had numerous tests carried out in Germany and also in the US. She did not test positive for Lyme (from Armin Labs), but did test positive for Bartonella, Babesia and also Epstein Barr, Cytomegalovirus and exposure to a number of toxic mold strains. The Naturopath wants her to try 10 pass Ozone treatment to help with any infections. Our GP is of the opinion that we are chasing mirages following the possible cause / trigger of her condition as being infection related at all, let alone to lyme disease. The Canadian Lyme test also showed up as being negative (not unexpected). Our GPs views are that based on additional blood work that he has done, all her tests show extremely normal, and that any active infection would have raised a flag based on his tests.
1. Is it possible to have a chronic infection, that could trigger/cause ALS or ALS like symptoms and still show normal blood work results?
2. Is there any value in getting additional Lyme testing carried out (from Igenix for example).
3. Is it worth seeking antibiotic treatment in the US based on her current test results / symptoms. Is it even possible without getting a positive test result?
Any advice would be appreciated...
Fri, 02 Aug 2019 20:02:01 GMT
I would do the provocative antibiotics test as outlined here under latest developments and be tested by Igenex/.
Sat, 14 Sep 2019 08:42:56 GMT
Sad to hear about your wife diagnosis. I understand you still have hope it might not be it.
I was also using the ArminLabs and gotten similar results: bartonella and Epstein Barr.
Have you tried the provocative test and then the IGenex testing?
I am also from Canada and possible have used the same ILADS, unless canadian ILADS naturopaths use ArminLabs.
Thu, 26 Sep 2019 19:37:03 GMT
Thanks for the reply. We are in Calgary and are dealing with an ILADS naturopath here. My wife is currently undergoing 10 pass Ozone treatment as well as some other naturopathic treatment to help with the Bartonella/babesia/ mold issues. Once she has completed that we will then do some retesting. This time we will go through Igenix rather than Armin. Getting access to the antibiotics for a provocative test is problematic here in Canada so although we would like to to that I am not sure we will be able to.. have you done this?
Sat, 28 Sep 2019 18:49:52 GMT
Find a Lyme literate doc at https://www.ilads.org/patient-care/provider-search/
Mon, 30 Sep 2019 09:18:25 GMT
I have managed to get the antibiotics for the provocative test from Europe.
I stopped the test before i went to my ILADS literate doctor who sent my tests to ArminLabs. Which came negative on Lyme panel tests, as i mentioned before.
Interesting enough, the ILADS literate didnt tell me to do the provocative test nor did she ask me if i did it. So, i am not sure if all ILADS literates are the same.
As for antibiotics, you may convince your family doctor to put you on antibiotics on the account that she has Bartonella and Babesia.
lYou can also convince them about the provocative test. You can tell them that getting to the lyme in CNS (central nervous system: brain, spine) is harder because of BBB (blood brain barrier). The concentration of AB (antibiotics) required for treating lyme in CNS is at least double than the normal dosage. There are PubMed papers indicating that.
There are resources on the internet about the provocative test and you can explain to the doctor. I think that even if you do for a shorter time than the recommended period for the provocative tes t, it is still better, because if there are any bacteria they will be affected and it will be detected in the test.
Dont give up.
Mon, 30 Sep 2019 13:05:11 GMT
I believe IGenex is the most accurate lab. What is important is to use the pulsed method for treatment and use the absence of Herxheimer reactions every 3 to 4 weeks to determine when the infection is suppressed.
Tue, 01 Oct 2019 02:12:30 GMT
Marian / Dr Tedone.. Thanks for the update & info. I will definately be using Igenix to retest. She will be finishing her tenth course of 10 pass Ozone next week. After that I will also be trying to somehow get the appropriate antibiotic for provocative testing. I am wondering if the Ozone will have any effect on the test...
Tue, 01 Oct 2019 03:00:27 GMT