I have been sick for 3 years. With teh SAME symptoms 24/7, they do NOT wax and wane, they are CONSTANT. They are neurological...
I am debilitaed from these symptoms that ALL started in my pregnancy with my daughter. I was never ill before this. I have 24/7 excruciating head/brain pressure, feel off balance, and my head is so tight and heavy and full of pressure sometimes I cannot even life my head up, or walk.. I feel like a drunk.
Since the beginning I have had a positive ANA, RF, CRP and high wbc's and neutrophils.
I continue for 3 years straight to have a HIGH ANA, HIGH RF< HIGH CRP, HIGH WBC's, and now HIGH sed rate to add on top of everything else.
I also recently had a spect scan that said I had "mild to moderate diminshed cortical activity in the cerebrum bilatterally and also relativley decreased activity in the basal ganglia"
There are no answers... I have been on lyme treatment for 2 years including abx, and herbs.. etc.. nothing has helped me.
COuld it be that I actually do NOT have lyme at all but an autoimmune condition seeing as my Blood work is continually positive for autoimmunity?
Also, that I have not responded to lyme treatment?
I do have a positive IgG westernblot from Igenex.. but that just shows exposure. Not active infection.. All PCR testing from MDL for lyme and co-infections negative and IGenex panels for co-infections negative as well...
I am so lost.. and still so ill
Posted by Marnie (Member # 773) on :
The trigger for autoimmune is, I believe, a protein/proteins that are present in pathogens or are "retrovirus" proteins that are re-activated when inflammation happens.
Our DNA contains a LOT of rogue proteins...LOTS.
Bb can trigger autoimmune. HIV triggers autoimmune. MS is triggered by a protein from a retrovirus (HERV-W) that is reactivated.
In "normal" circumstances that protein actually helps to implant a placenta.
(The W stands for tryptophan. If the actual virus was intact and whole, it would need tryptophan.)
One infection/injury can trigger a LOT of inflammation ongoing which is believed to reactivate latent retrovirus proteins in all of us.
Ongoing inflammation is NOT GOOD.
Just like too much inflammation really fast can do a number on our brain cells which then suffer from "collateral damage".
Which is WHY...there are now motorcycle helmets that on impact...COOL the head to reduce inflammation until the injured driver can get to a hospital.
Inflammation IS part of healing and IS necessary, but too much too fast OR ongoing is NOT GOOD.
Posted by Parisa (Member # 10526) on :
What kind of antibiotic protocol have you done? Have you done IVs? Have you treated for co-infections?
I don't believe in autoimmune per se. I don't believe that the immune system starts attacking itself for no reason. The trick is to find the reason. For many, the reason is an occult infection whether it be Lyme, mycloplasma, c. pneumonia or other organisms.
The hardest part of a condition like yours is finding what is causing it and then getting adequate treatment. You need Dr. House but he'd probably kill in the process of discovering what was causing your problems.
Posted by randibear (Member # 11290) on :
i thought there were all kinds of autoimmune disorders and that lyme is just one of them.
???
Posted by WildCondor (Member # 434) on :
Something has to be triggering the autoimmune process, and that is usually an infection. The cause has to be found and effectively treated. What you are being diagnosed with are symptoms.
Posted by D Bergy (Member # 9984) on :
If it is an autoimune disease, you can effectively treat it, and Lyme, with Low Dose Naltrexone.
Lyme, as it weakens the immune system, can bring on an autoimmune conditon as a byproduct of the disease.
Dan
Posted by MDW005 (Member # 22706) on :
Not sure why treatment isn't working for you; but before I was dxed Drs were saying I had an autoimmune disease.
As soon as I started treating lyme, my liver enzymes are normal again. I understand your symptoms seeing I had those very symptoms.
Like what WildCondor says... something is triggering the autoimmune process.
Posted by Marnie (Member # 773) on :
Bb is very adept at changing protein (antigen)/gene expressions to avoid destruction.
Look closely re: flagella:
Dr. Simon has worked on the mechanism of site specific recombination in bacteria and on the mechanism of bacterial movement and chemotaxis.
He and his colleagues were the first to demonstrate that bacterial flagella were driven by a rotary motor.
They uncovered the mechanism of phase variation showing that the specific inversion of a segment of DNA that carries a flagellin promoter region controlled the ability of the organism to
switch from one flagellar antigen type to another.
Dr. Simon's laboratory helped characterize the components involved in sensory transduction in bacteria.
They were the first to show that
the process involved protein-histidine phosphorylation
and helped define the nature of "two component" sensory systems in bacteria.
They subsequently determined the three-dimensional atomic structure of the
protein histidine kinase that plays a central role in this process."
For DNA to replicate it must supercoil...there must be a counter-direction that happens. Clockwise direction and a counterclockwise direction. Think of twisting a jar lid.
Bacterial flagella rotate, but to REPLICATE...the above has to happen.
While Bb's flagella are "hidden", look very closely at the arrows pointing the directions of rotation (picture - and read the sentence under it):
In plants and microorganisms, salt stress regulates the expression of large numbers of genes.
However, the machinery that senses salt stress remains to be characterized.
In this study we identified sensory
***histidine kinases that are involved in the perception of salt stress***
in the cyanobacterium Synechocystis sp. strain PCC 6803."
PMID: 12853569
I'd have to take a long hard look, but...
Genistein inhibits protein histidine kinase.
Would Bb then change genes/protein expression...dive for cover i.e., cyst?
Posted by unsure445 (Member # 15962) on :
If you have gone 3 years with no improvement I would present these symptoms to a regular doctor and start from there. Double up on opinions so to speak.
You can't assume everything is Lyme. What does your LLMD make of your situation?
It sounds complicated. I hope you get some answers soon!!
Posted by glm1111 (Member # 16556) on :
I agree with parisa in that the body doesn't attack itself, but sets up a defense for the immune system to attack the infections.
The high wbc count is indicative of infection. I had SEVERE neuroborrelia and constant symptoms when I was in an accident and this disease was set into motion from the trauma.
This is a scenario for a lot of people. Do you have an LLMD? You might respond better to IVs.
Another member on here was having severe neuro symptoms along with numerous systemic symptoms. He has improved a lot since starting IV's with an LLMD in MD.
The other thing you might want to consider is that there is a parasitic/worm connection to this disease. Dr. K. treats all of his patients for parasites and worms before he goes after any of the other infections.
They can play a MAJOR role in Lyme disease. Do a search on here for parasites and Lyme.