Ongoing fight

I will do, and we look forward to hearing about your progress and if you have any issues too!!

Just wanted to suggest another natural antiviral alternative to Acyclovir and other Rx…

IMN V II by Beyond Balance

Please note that a high viral load really overburdens your immune system so I caution anyone who has high viral loads to address these first. I tested w/ high titers of over 4 viruses, which my LLMD targeted first before she would implement any tx for lyme & co. Your immune system can't deal w/ the viral load AND fight off lyme & co.

And, ignorant statements like this from physicians, no less, never cease to amaze me. Can they really not read? Despite the obvious failure of the CDC's two tiered testing protocol that even they declare needs to be considered within an overall clinical diagnosis, NO WHERE, NO WAY does the CDC state this:
"Other doctors and specialists I have seen either have no experience or say the same thing: "ELISA was negative so no you dont have lyme" then go on to tell me that Western Blot is useless without ELISA being positive first."

Idiots. those MDs need to lose their licenses. One day, someone is going to buy a full page ad in all the major newspapers and prove how stupid these guys are.

p

Also, Marine (and other struggling for a positive WB):

Please consider the benefits of "provoking" a stronger immune response w/ a natural antibacterial like Olive Leaf Extract or a course of antibiotics, with a duration covering the lyme life cycle (appx 6 wks), BEFORE testing. A boost to the immune system's production of the antibodies these serology tests are measuring should help you achieve more accurate test results.

Main problem w/ false negatives that most people produce is that these serology test results are reliant upon a well functioning immune system, which most people who are invaded by the lyme & co don't have since the immune system, white and red blood cells are attacked.

And agree, partnering w/ a good LLMD is critical.

p

Pirouette said...
Just wanted to suggest another natural antiviral alternative to Acyclovir and other Rx…

IMN V II by Beyond Balance

Please note that a high viral load really overburdens your immune system so I caution anyone who has high viral loads to address these first. I tested w/ high titers of over 4 viruses, which my LLMD targeted first before she would implement any tx for lyme & co. Your immune system can't deal w/ the viral load AND fight off lyme & co.

Well as I did only test extremely high on only the IGG portions, the ID specialist I just seen did comment on the labs I had done for that Cytomegalovirus. "Every one gets it, by the looks of your test you got it a very long time ago". I actually do recall when I got that virus at least the cluster of symptoms that came with it when I initially got it. It was back in 2005, the specialist told me I dont have it anymore and it is not causing the issues I currently have had. Just the antibodies floating around.

Pirouette said...

Also, Marine (and other struggling for a positive WB):

Please consider the benefits of "provoking" a stronger immune response w/ a natural antibacterial like Olive Leaf Extract or a course of antibiotics, with a duration covering the lyme life cycle (appx 6 wks), BEFORE testing. A boost to the immune system's production of the antibodies these serology tests are measuring should help you achieve more accurate test results.

That is funny, I actually just bought some of that Olive Leaf Extract about 6 or 7 months ago. It made my body feel "weird" the first time I took it. I actually didn't stick with taking it often, I need to go back to taking it though. I think it was stirring things up in there.

Traveler said...

LOL! I definitely share Pirouette's outrage about the ignorance on the testing for these infections. Those doctors obviously don't even know what the CDC recommends!!

"Lyme disease is diagnosed based on symptoms, physical findings (e.g., rash), and the possibility of exposure to infected ticks. "

www.cdc.gov/lyme/

I have shared the military/Lyme sites with you, haven't I?

Looking forward to hearing what this doc has to say. Let us know if we can be of help with finding articles or other information for you!

Oh, I share that same outrage trust me! When you are looking for answers and start researching actual publications on most of these things you start seeing how horrible a lot of these doctors actually are. Don't get me wrong, there are some good doctors out there. I define a good doctor not by whether he is able to immediately know whats wrong and how to fix it, because that is nearly impossible to know everything about everything. If a doctor tells me "I dont know what is going on with you...", If that doctor hasn't looked for anything and doesn't that basically tells me he could careless.

This new doctor I got that referred me to the ID specialist was extremely intrigued, told me he didn't know whats going on with me but he loves when cases like me walk through his door. He has a true Doctors mentality. I could see the gears in his brain turning while he was looking and listening to me talk. He is also the one that ran the lab for CMV, no other doctor knew what I had back in 2005. He found it on his first try, haha.

Ah, you may have shared a listing of those sites with me. You really cant ask me to recall things, my short-term memory is really bad. ;)

So I said I would return to update as soon as I found out some news.

My ID specialist went over the labs they put in and the labs I brought in from previous Lyme Western Blots, I do not have actual copies just yet.

As far as Anaplasmosis, Ehrlichia, and Babesia Microti antibody testing went. They were negative. Then proceeded to tell me as far as my previous labs suggest (IGenex and Fry Labs), show "definite exposure to ticks".

Apparently there is also an issue with my Thyroid TSH levels they keep going Low. I told the specialist that each time I have went on antibiotic treatment my TSH levels have returned to normal and I seem to benefit from the effects of antibiotics as far as fatigue, exhaustion, and muscle spasms go. The doctor didn't think they were related but I intend on running my own little experiment if i can get my primary care doc on board.


I have another course of Mino and Rifampin, I think I may take it and if I see the same response as last time and start feeling great, I am going to have him re-run some of the labs we did before. Such as Thyroid to see if its causing changes. I have enough labs over the past 10 years with a chronilogical medical record to prove consistencies and changes.

Yeah, those were the words. "You've definitely had exposure to ticks" but saying no to antibiotics since I already had been on dual abx for 2 months. And I told the doctor about this past October 7 days while on antibiotics my appendix ruptured out of no where when all my symptoms improved greatly from them.

I did however get an extra lab done today, Bartonella antibody test. We will see how that one turns out by the end of the week Im sure. I had that Fry Labs blood smear done in 2009 and it showed some Bart on it.

Hey Traveler, I may have mentioned this before. Back in October most likely.

Something I found quite interesting that none of my doctors cant seem to explain. So back in October, after having gone years without answers for all my fatigue and many other symptoms. I followed up with that Lyme Literate Doctor in WA. That doctor prescribed me two antibiotics because that doctor still believes its Lyme and wanted me to do like 3 months of these two antibiotics. Rifampin and Minocycline. So 5 days on these two antibiotics and I woke up that 5th day feeling amazing, my fatigue was gone. Lots and lots of energy it wasnt hard to get out of bed. Hardly anything remotely suggesting muscle spasms. I sped to the gym to take advantage of that day. The 6th day was the same, I was sure I was going to do this whole course. 7th day was the same, but Im not entirely sure what happened on day 7 but my appendix suddenly ruptured putting me in the hospital for 3 days. Which was nice because they pumped more IV antibiotics in me. I felt amazing even while in the pain from the emergency surgery.

Then along came December, Infectious Disease Specialist appointment where the specialist told me that the two antibiotics I was taking for this "suspected Lyme" the Lyme should be dead and I shouldnt have to take anymore of it. I should be good to go now. Well okay then, so I stopped the next day which landed me about the 2 month marker on those two antibiotics.
I cant say approx. when but I know by January I felt like absolute garbage again. Fatigue back, completely exhausted just trying to fold laundry and muscle spasms from hell. And of course dont forget the insanely high blood pressure most of the day.

So June 5th came around and I still had 1 bottle of Minocycline and Rifampin that I had filled months before. Just sitting there expirng itself. I said screw it and wanted to give this a shot again. 1 more month of Minocycline, I mean hell after my 2nd ID specialist appointment saying its not an infection and giving me absolutely no hope of solving this issue why not. 4 days later, fatigue is the first noticeable improvement. Now im almost done with the entire course and ive got so much done this month been pretty active too. Hardly any muscle spasms doing things, hardly get exhausted, was able to walk my dog I had to carry her back because she was tired long before I was. My blood pressure this whole month has been sitting around and under 130/70 and heart rate around 80 or lower. Whereas before it was constantly 145/90 and higher somedays even up to 170/100 and heart rates usually siting around 90+ resting.

I find it weird that it has exponential benefits for me, but not so much for others with Lyme. And I get better on it and worse off it fairly quick. Im starting to think maybe I have some sort of autoimmune condition that was maybe triggered by an old infection? I have done some reading around the internet Medical Journals on Mino and its antiinflammatory effects on spinal cord and brain. I may have my doctor look for MS again.

Well I know MS and Lyme have been said to have links to each other, I have seen articles claiming that MS is in fact Lyme. I am completely fine with Doctors not knowing the answer. But when they lie to my face or make up false information to make me "feel better about it". I now this isn't something that has been perfected, the human body is complex and there is a ton of variables that come into play and only a certain amount of symptoms you can possibly have. But these doctors telling me "You may never find an answer for this", "If you find out what it is, what if there isnt a cure for it, is it going to change anything?" ... Uh yea, itll change everything like how I can go about fighting it for one.

Prior to trying this Minocycline, I was trying everything from home remedies to different herbal detoxes. I even tried Hydrocolon Therapy a few times to clean out my intestines.But none of this has had even a fraction of the effect Minocycline has had. The difference really is an exponential difference and it took it 5 days.

I literally have a shoebox filled with prescription medication that these doctors tried shoving in my face, "here take this for this symptom and this for that symptom". I have 2 different kinds of blood pressure medications, anti-depressants that were being used to treat neuropathic nerve pain, some anti-seizure medication because one doctor thought these "attacks" I would have may possible be some kind of "micro-seizure" after losing sensation in my hands and feet. I have a few different muscle relaxers and sleep medication one of which is Lunesta.
If doctors found the reason behind these symptoms, instead of pushing these pills to mask symptoms. We would have a healthier smart society. But most of these doctors and specialist arent scientists, not anymore. All they truly know is what medication to give you for what symptom. Thats how I feel about it anyhow.

In any case, I thought it was interesting how this medication was working. I actually did have some downsides to being on Minocycline a few times. Within the first week on a few occassion it made me extremely tired and gave me a one sided migraine, I had to sleep it off each time. But it was temporary and I still felt really good after it dulled back down. Occassionaly made me a little dizzy or lost balance a few times. But the benefits FAR outweighed the side effects.

My first go with Minocycline was actually in 2009 when I first met the LLMD. Within the first week I had swollen lymph nodes. So this is definitely not the first time ive taken Mino, it probably wont be the last time either.