Lyme only in the Brain???? seriously, please help here

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Regular Member

Date Joined Dec 2006
Total Posts : 79
   Posted 4/10/2009 7:13 AM (GMT -6)   
I just got back from a visit from a new possible doctor who boosts an 88 percent cure rate in 2 months.  When I went in for the appointment I was armed with my Bowen qribb test, and my latest blood draw showing band 23 positive.  I also (like any good lymie) was armed with a 3 page doc I typed up describing everything I've experienced since I got sick, including my treatments with doxy, antifungals, ect..... 
I have always been a researcher, and feel I know this disease well. 
I was told the reason why I'm still sick is that (95%) of lyme resides in your brain while the other 5% is in the tissues.... HUH?????  Number one, if lyme only resides in your brain, then I must not have it because I have really bad scalp issues, but when going for a spect scan, It is normal.... 
I felt I was at a sales promotion for IV PIC Line therapy... to the tune of 500 a day...  I also would have to go there to have the infusions daily (which is 2 hours from my house)  Now if Im not mistaken, I've read on here that people on Rocephrin have had to have months of therapy with no cure.... apparently he also administers nutrional therapy IV that helps process the toxins for another 200 a day....  (they have all this stuff there and admister the picc line therapy there)  They are making a killing, as opposed to ordering home therapy.....
Now I would do anything to get well, however, when he said that lyme resides in the brain, I just didnt buy it... I have joint issues, fatty lumps, spiderveins breaking out everywhere, stiffness, sticky discharge comming from eyes...  What, praytell, is causing that???  The explanation was that the toxins come down from your brain and cause these issues, also the reason why I have the constant faculations is that its sitting on a nerve in my brain...  I was under the assumption that lyme is in your tissues and when they emit toxins, thats what causes the fasculations....  I also have fatty lumps that are painful, I thought they were lymphnodes... how is that comming from my brain???  I think I have bart also, but produce no antibodies to it....  I also think I have really deep systemic fungal issues, but know one can prove that.  He decided to run a pcr for bart, and an 6 peptide elisa for lyme also they are running imm igg to see if my immune system is functioning properly...  So atleast, I am having these additional tests...
I gotta tell ya, Lyme is a money making buisness, with everyone trying to sell you everything.... I am real tired of it, real tired of it....There are times I would so rather die than keep going on like this...But I have a five year old, and really cant opt to do that...  Can you please tell me what you think???
Also, has anyone had hair loss on there body??? since I got sick, I developed lumps on the back of my leg (along with everywhere else) but lost hair in that area?????  Thanks for all your support and replies...  

Regular Member

Date Joined Jul 2007
Total Posts : 296
   Posted 4/10/2009 7:58 AM (GMT -6)   
Lyme does get into the brain. And the problem is antibiotics supposedly cannot cross the blood brain barrier do to their large molecular size so they are useless in fighting the infection in your brain. Even if you eliminate it from your body, the Lyme in your brain will just reinfect you I was told. Dr. Zhang in NYC uses Chinese herbs that supposedly have a small enough molecular size to cross the blood brain barrier and fight the Lyme in the brain. Since I am not getting any better on antibiotics, I started with the herbs yesterday. Something has gotta work! The herbs are about $300 a month. Way less than the IV treatments. And people have said they improved. Lots of Lyme symptoms are a result of vasculitis, which is an inflammation of the veins. The inflammation cuts blood flow to your brain, vital organs, skin--everywhere.

Regular Member

Date Joined Dec 2006
Total Posts : 79
   Posted 4/10/2009 10:36 AM (GMT -6)   

Sorry, Maybe I miss wrote that....

I know that lyme resides in the brain, but I hardly doubt its 95 percent... according to him it cant live anywhere else because the immune system would attack it.......WRONG..... Your spinal colomn and the fluid that protects your brain would also kill it, that is the strongest part of our immunity, unless it is somehow disabled... The fact that he said lyme in the brain causes all the other symptoms not associated with neurological stuff.... is wrong, it makes no sense...  Why do peoples joints swell, and they have teeth pain, etc.... did the toxins just magically move from the brain to these places????  that is what Im getting at.....  And if the lyme is causing inflamation and vasculitis (which I experience all the time) then how is it only 95 percent in the brain..

I also understand about the blood brain barrier and only IV will do to kill off everything in the brain as opposed to oral... however, He was making a sales pitch.......  for pic line therapy, so he could make 300,000 in two months of therapy.... thats administerd in his office....  and deuling out misinformation..  Its just plain wrong....................  and I am upset.... and just needed to vent, thanks for listening.


Veteran Member

Date Joined Aug 2005
Total Posts : 4459
   Posted 4/10/2009 4:11 PM (GMT -6)   
Hi jojeanie,
I don't know if this will help you, but it has helped me when I was suffering from chronic lyme and my brain was really affected, I had severe brain fog, confusion, etc.
I did research like yourself and found out that in my case it was an overload of ammonia in my brain,  joints, tissues, etc. that caused many of my problems.  I took alternative medicines to clear all that out and I have been better for many years now.
You may be interested in reading the links below as they helped me understand what was going on inside my body and brain.  There is something called "leaky brain syndrome" which you can read about in the second link..  
Toxins are everywhere inside of us and in my situation, heavy detoxing really helped me (I still continue to detox even though I am better to keep my immune system strong).
Hope this helps,
It's all about the Immune System mixed with a large dose of Positive Thinking and Daily Detoxing
This song is about my years with chronic lyme since 1995 and being in remission for over 3 years:

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