Thanks for posting. Pretty sure I have seen that list or a similar one before from either this doc or another one.
I guess it is good to have all the info in one place, but I know when I went to the LDA conference over the summer there were a couple of presenters with similar type lists. One of them was listing all the things to rule out in tickborne patients. And another one or two were bragging on how high their treatment success rates were.
Sorry, I agree all the things on the list are important and it is important to rule out other causes of illness. But there are many chronic tickborne patients who, like my hubby, had already addressed all of the issues raised and the only explanation for their ongoing illness is chronic tickborne infections.
Lack of adequate treatment for ongoing infections is the number one cause of tickborne illness patients remaining ill in my opinion.
Adequate nutrition is essential and can alleviate some symptoms, but get rid of the infection and the body is an amazing thing. It can correct imbalances much more easily in the absence of infection.
For example, hubby had docs try to correct hormone imbalances and nothing would work until he treated the infections.
We probably spent an average of $400 monthly on supplements for half a dozen years just so he could function. Wish we had had a doc at the time who would have treated more aggressively and we could have used that money more wisely in my opinion.
Yes, I know all the arguments about whether the terrain is the cause of all illness. Sorry -- I just don't buy that argument in regards to tickborne and other stealth infections.
My advice is don't get side tracked from the major issue which is ongoing infection. Don't ignore other issues, but keep the focus on the cause of the illness.
This is not medical advice, just my opinion based on hubby's experiences.
Bea Seibert
Note: this comment is not specifically directed at the author of the book. I am just getting tired of everyone saying they have the majic bullet when that is not the case -- and I don't care how many patients they have seen.
Hubby liked to collect quotes and one he liked was from Micheal J Fox. It said something like "The patient will always tell you that the treatment that got them well was the last one." He got a laugh out of that, because usually everything that led up to that last treatment is just as important. No one thing gets a person well from a chronic debilitating illness.
You need the right tool kit as hubby always said and the more tools the better.
Posted by seibertneurolyme (Member # 6416) on :
Ok -- Now that I have seen the webinar I have a couple of more comments.
I guess hubby and I were doing more things right than we knew.
The reality is that the only xymogen product he ever used was ALAmax. But he probably took over 85 percent of the nutritional supplements discussed -- just from other manufacturers -- and often in significantly higher doses than discussed. He also took quite a few additional things that were not discussed.
Maybe that is why pain was never a major symptom for him.
But as I discussed above -- you can do all the detox and nutritional support you want, but without adequate treatment for the underlying infections in my opinion you will never recover your health.
And you also need to be aware that standard AMA docs will not only tell you you are wasting your money by taking "unproven" supplements and herbs they may even tell you you are doing harm. During hubby's final hospitalization the pulmonary doctors polititely told me I had poisoned my husband -- the progress notes use a little more politic language than that.
The hospital toxicologists did say that nothing on my list of herbs and supplements should have injured my husband's lungs, but the accusation continued to appear in the progress notes multiple times daily (from multiple docs) even after the toxicologists gave their opinion.
Just another version of the same old "blame the patient" mentality when the standard AMA docs can't find a cause for an illness.
Bea Seibert
[ 10-11-2013, 06:50 AM: Message edited by: seibertneurolyme ]
Posted by seibertneurolyme (Member # 6416) on :
The big thing that I saw missing from the discussion of supplements was the use of lumbrokinase and systemic enzymes such as wobenzyme.
Also spleen prototective herbs such as red root. That of course would be more specific for babesia patients.
Hubby saw many ACAM physicians over the years and also nutritionists and herbalists. It did take us many years to put together his nutritional and herbal supplement protocol so it is good to have it all in one place in this book.
But as I said before doing everything listed could easily run to $400 - $600 monthly. And then add meds on top of that and doctors appointments and it is no wonder tickborne patients remain ill.
Please excuse me if I sound negative and upset this week -- but 10/9/12 was the one year anniversary of Steve's death from ARDS (lung failure) and splenic infarction (blood clot in the spleen) that I believe were caused by babesia or a babesia like blood borne protozoan.
Bea Seibert
Posted by Razzle (Member # 30398) on :
Bea,
You said, "...you can do all the detox and nutritional support you want, but without adequate treatment for the underlying infections in my opinion you will never recover your health."
I agree 3000%!!! I have been through so many nutrition programs and fix-the-gut protocols, etc., and I just kept getting sicker and sicker.
So when another LLMD told me to "fix my gut first," I lost it. I finally said, I've done XYZ numerous times and have only gotten sicker. Isn't there the possibility that the infections themselves are CAUSING my gut problems?
A very small yes issued forth from him. And then we discussed abx and herbs and stuff to try to kill the Bart. that hasn't really been treated yet (Cipro didn't work).
So yeah, the supplements and herbs and stuff to support the body are important, but I agree we cannot lose sight of the infections themselves as a major player in all the wacky things going on in our bodies...
I'm so glad you have continued to be involved in this community in spite of your painful loss. Your insights are most appreciated by many here.
Take care,
Posted by map1131 (Member # 2022) on :
Thank you abxnomore. Great info. I so see myself in all his 16 points. I'm no doubt one of the 25% that keeps failing to get to the other side.
I guess God helped bless me with retirement money because he knew I was going to need it. For this I am thankful.
My dream was to use that money to travel with my husband and have a good life. Today I barely function at a normal life. I sure don't want to continue down this road.
![[group hug]](graemlins/grouphug.gif)
I'm so glad you have continued to be involved in this community in spite of your painful loss. Your insights are most appreciated by many here.