So I have been reading through all these great topics, and I can't help but notice something.
As you know many lyme symptoms are very similar to MS. I also read a few threads that said people had lesions on their MRI.
My question is this... I have a close friend that was recently dx with MS. I told him to look into Lyme, but his doctors said spinal was positive and MRI shows lesions. How many of you have had this same dx only to find out that you do have lyme's, and once treated saw improvement?
THANKS!
Posted by TF (Member # 14183) on :
Well, here is a lyme program done by a Boston TV station about 2 years ago. It starts off with a woman who was diagnosed with MS and it turns out she had lyme. She seems to be well now.
Hope this influences your friend into getting tested for lyme. After all, there is no cure for MS, but there is for lyme.
I got rid of my lyme over 5 1/2 years ago and I am still symptom free, enjoying my life.
Posted by karenl (Member # 17753) on :
Some people also say MS is chlamydophila pneumonia and can be healed by a special protocol. cpnhelp.org.
Whatever it is lyme or cpn it needs to be treated with abx. In many cases it is both. Also make sure there is no mold in the house or at work.
Posted by dsiebenh (Member # 5353) on :
I have lesions and that was a major basis for my MS diagnosis, and 5 years of treatment. I later tested Igenix positive for Lyme too. Interestingly, my lesions had stayed the same or slightly improved when MRI'd 9 years after "MS" dx.
I am not sure that the CSF test conclusively proves anything regarding what disease you have, and I have refused to take it. If it is positive, what will they do? Call you an "MS" patient and limit your immune response.
I prefer to fight Lyme instead of rolling over and giving up as an MS patient.
Posted by Fuel1212 (Member # 29312) on :
I love this forum, you guys are so special!
In my gut, I just think he has lyme, he spends a ton of time outdoors it would just fit. His parents have 4 acres mostly wooded. The MS meds that pharma has do nothing for him.
I will try to find the right time to ask him and his family to check out the lyme route again. Anyone know discounts to getting testing? He has newborn twins and a 4 yr old, so money is tight?
This is one page of Randy's site with reference to M.S. and other disease commonly misdiagnosed. http://www.ctlymedisease.org/conference1.htm A quote from about 1/2 down the page: Dr. Mattman also showed evidence that spirochetes of several different types, including the Bb strain, are involved in Multiple Sclerosis. Spirochetes, which were found in autopsied brains of M.S. patients looked more like borrelia in morphology. Spirochetes were also found in the spinal fluid of M.S. patients. Dr. Mattman also mentioned a relationship between Lyme, ALS and Parkinson's. Those Parkinson's patients who were treated for Lyme all improved.
Posted by maps (Member # 19758) on :
9 years diagnosed with CFS, two years ago someone suggested lyme I had lots or neuro problems mostly balance, sometimes could not understand what people said to me, co-ordination and on and on (obviously a hypocondriac) as no one could actually see these symptoms, sent to phsyco doc - treated for 2 years no change.
Finally tested CDC/igenex positve.
Went to LLMD who orderd bunch of tests including head MRI and i had severe white matter lesions (so everyone was right it was in my head)and he suggested MS but two neurologists later could not decide if it was MS or not.
I started antibiotic therapy and last spring had almost a full remision but have declined over the summer. But my balance is back to normal, the extreme fatigue is gone, still have a long way to go.
I do not see any harm but great advantage for people to get tested for lyme. If he has lyme it would be so bad to do the ms treatment.
Hope this helps.
Posted by TS96 (Member # 14048) on :
I pray your friend and his parents are open to the possibility of lyme.
My MIL has MS, never improved with the copaxone and other MS med Avonex sp? something like that, and won't hear of a lyme connection.
They have tons of ticks where they are, bitten many times and can't get past the "but my doctor said I don't have lyme" end of story.
Some people are stubborn, I hope your friend is not. You're a great friend.
Posted by lou (Member # 81) on :
There is no definitive test for MS. Not the spinal tap, not the MRI showing lesions.
So, if this person has any gumption at all, an appointment with a lyme doc would be good to do. The problem with getting an IGeneX test is that unless it comes back CDC positive, a non lyme literate doc will dismiss it as a diagnosis. Not everyone with definite lyme cases tests positive. This is why you need an educated doc to look at the history and symptoms too.
There is a program for reduced/no fees for testing. Someone posted it recently. But the request has to come from the doc, not the patient.
Posted by Fuel1212 (Member # 29312) on :
Wow...this is GREAT stuff here. I thought there might be a connection since I kept seeing it in my research.
This information and your stories are invaluable. Now if I could just get them to be somewhat proactive in this whole thing. They think because the ELISA test came back negative, its a done deal no lyme.
Now comes the money issue paying for the LLMD and blood work. If any of you know some tricks, let me know please so I can pass them along.
Thanks so much Fuel
Posted by nybasketball212 (Member # 28309) on :
It is definitely a possibility, but don't ever believe 100% of MS patients have lyme. MS is very real. A few patients here and there end up actually having just lyme.
MS usually first consists of series of "attacks." Some have an attack and then are fine for another 15 years until they have another one. Some will never have another one. If the patient has not been suffering all that long, and has a lesion on their brain- the MS diagnosis makes perfect sense. Not too many lyme patients have lesions on their brains. However, it cannot hurt to look into lyme, there is always that small possibility.
Posted by ktkdommer (Member # 29020) on :
Did you know that you can get Lyme testing through IGeneX for $200 if you only do the IgG and IgM Western Blot? That isn't so bad and that's all you need. We needed three of them in our family. The kit is free from them. Maybe friends and family could do it like a coupon for a Christmas gift. I know he wants to be healthy and active for his twins. Any chance his wife has it? You are an amazing friend!
Posted by GiGi (Member # 259) on :
Per Dr. K., who was my doctor and helped me to get well, has found that with all who have come to him over the years with an MS diagnosis, Parkinsons diagnosis, ALS diagnosis, Autism -- have as an underlying problem Lyme infections, as well as other toxin problems that need to be addressed also.
MS can be from an oral spirochete. Sometimes it is a Lyme spirochete.
It can enter the CNS after there is a thin barrier between the subarachnoid space and sphenoidal sinus.
Spirochetes that cause MS.
- Spirochetal myelophora - T. denticola - Borrelia burgdorferi
If you inoculate the CSF fluid from MS patients with these spirochetes in certain animals (such as bunnies!), they die.
Possibly many more spirochetes are involved. Of course, none of this is official, but Lida H. Mattman has been right about things forever, and it's only a matter of time before they acknowledge she is right once again in my opinion. She studied spirochetes and other bacteria until the day she died.
She cultured organisms such as the Lyme bacteria from the blood for a long time, and people are finally copying her.
Her book is called "Cell wall deficient forms: stealth pathogens" and she had a 400+ page book since 1974. She has a 2001 version. It's the most comprehensive book on the L-forms and the shape-shifting behavior of bacteria.
Her credentials are incredible. She had a Ph.D. in immunology from Yale. She worked as a professor at Harvard. She worked as the director of clinical laboratories for the UN and worked with the commission on airborne infection. She held other high positions over the years and was highly qualified.
Note: Even though Mattman had a detailed book about L-forms since 1974, it wasn't until this year that the mainstream accepted that L-forms are real.
Posted by lou (Member # 81) on :
Here is the thread about financial help for testing. It is meant for people who really do need financial help.
Tell your friend that the ELISA test is very nearly worthless.
I have known of a number of lyme patients with white matter lesions on their brains.
Posted by WIGGY (Member # 15377) on :
I have "white matter lesions" on my brain and diagnosed with MS in 1996. Did some MS treatments - none helped. I was diagnosed with Lyme in 2008 and the antibiotics are clearing up my "white matter lesions". My neuro wants to do an MRI but I told him first I will co Rocephin and then we can see what my brain looks like. I will post results when I get them but I don't plan on having it done for at least 6 months.
Posted by Lauralyme (Member # 15021) on :
Originally posted by nybasketball212: Not too many lyme patients have lesions on their brains.
I have lesions on my brain. I also know of many local lymies with lesions as well.
Posted by Tammy N. (Member # 26835) on :
Another suggestion -- To open your friends eyes I would have him see the film 'Under our Skin'.
Good luck.
Posted by dsiebenh (Member # 5353) on :
" They think because the ELISA test came back negative, its a done deal no lyme. "
My ELISA was negative too, and that was one basis for my MS dx. Much later I tested Igenix positive.
If you research ELISA you will find it is partially accurate only at around 6 months post-infection. At all other times it is highly inacurate. It should not be used.
My opinion, totally unproven - it's all Lyme.
Posted by momlyme (Member # 27775) on :
How do you know if you have lesions on your brain? Cat scan?
Posted by lyme in Putnam (Member # 11561) on :
Mine was a cat scan.
Posted by onbam (Member # 23758) on :
According to my doc, a prominent neuro told him to treat every MS patient with antibiotics as a first step. Check out the geographic distributions of the two illnesses. Scary
Posted by lymeboy (Member # 24769) on :
Lesions are VERY common with Lyme. My MRI report actually said lesions associated with MS and Lyme. Get your friend to a Lyme Doc. I cannot possiblt hurt. Make sure it is a LLMD! Many docs will shove him out the door after a blood test comes up neg.....
Posted by dsiebenh (Member # 5353) on :
My first MRI in 1999 said the lesions were indicative of MS. 9 years later, an MRI that was the same or better was read by the radiologist as "Lyme or MS".
Posted by TerryK (Member # 8552) on :
nybasketball212 wrote: Not too many lyme patients have lesions on their brains
I've seen many people with lyme post here that they have lesions.
Terry
Posted by TerryK (Member # 8552) on :
posting some articles and interviews that you might want to pass to your friend if you think it is appropriate.
Chronic Lyme borreliosis at the root of multiple sclerosis - is a cure with antibiotics attainable? Fritzsche M.
Clinic for Internal and Geographical Medicine, Soodstrasse 13, 8134 Adliswil, Switzerland.
Apart from its devastating impact on individuals and their families, multiple sclerosis (MS) creates a huge economic burden for society by mainly afflicting young adults in their most productive years.
Although effective strategies for symptom management and disease modifying therapies have evolved, there exists no curative treatment yet. Worldwide, MS prevalence parallels the distribution of the Lyme disease pathogen Borrelia (B.) burgdorferi, and in America and Europe, the birth excesses of those individuals who later in life develop MS exactly mirror the seasonal distributions of Borrelia transmitting Ixodes ticks.
In addition to known acute infections, no other disease exhibits equally marked epidemiological clusters by season and locality, nurturing the hope that prevention might ultimately be attainable.
As minocycline, tinidazole and hydroxychloroquine are reportedly capable of destroying both the spirochaetal and cystic L-form of B. burgdorferi found in MS brains, there emerges also new hope for those already afflicted. The immunomodulating anti-inflammatory potential of minocycline and hydroxychloroquine may furthermore reduce the Jarisch Herxheimer reaction triggered by decaying Borrelia at treatment initiation.
Even in those cases unrelated to B. burgdorferi, minocycline is known for its beneficial effect on several factors considered to be detrimental in MS.
Patients receiving a combination of these pharmaceuticals are thus expected to be cured or to have a longer period of remission compared to untreated controls.
Although the goal of this rational, cost-effective and potentially curative treatment seems simple enough, the importance of a scientifically sound approach cannot be overemphasised.
A randomised, prospective, double blinded trial is necessary in patients from B. burgdorferi endemic areas with established MS and/or Borrelia L-forms in their cerebrospinal fluid, and to yield reasonable significance within due time, the groups must be large enough and preferably taken together in a multi-centre study.
Posted by TerryK (Member # 8552) on :
Addition of antibiotics to MS therapy could slow down progression of the disease Medical Research News
Published: Tuesday, 11-Dec-2007
Researchers from Louisiana State University in the U.S. are suggesting that the addition of antibiotics to standard drug therapy for multiple sclerosis, may slow down the progress of the disease.
The researchers believe the antibiotic possibly hinders the action of an enzyme that destroys certain cells in the nervous system. Multiple sclerosis (MS) is a chronic, inflammatory, demyelinating disease that affects the central nervous system. It usually occurs in young adults and is more common in women than men and affects 2.5 million people worldwide.
MS usually affects genetically susceptible individuals but it's trigger remains unclear. The inflammation affects parts of the brain causing a degeneration of brain tissue and in the most common type, relapsing-remitting MS, patients experience attacks of symptoms such as muscle weakness and spasms followed by periods of symptom-free remission.
Many patients with relapsing-remitting MS are often prescribed the medication interferon which boosts the immune system and fights viruses, but some still experience relapses and may continue to develop new areas of damaged brain tissue (lesions) which are visible on magnetic resonance imaging (MRI).
Dr. Alireza Minagar and colleagues conducted a small trial involving 15 patients with an average age of 44.5 years with relapsing-remitting MS who had been taking interferon for at least six months and were experiencing symptoms and developing new brain lesions.
The researchers suspect these unpredictable attacks may be triggered by an inappropriate response to viral or bacterial infections, with symptoms appearing and disappearing in a random manner.
For a four month period the patients were given a 100mg a day of doxycycline, a member of the tetracycline family of antibiotics, to take in addition to their regular dose of interferon. The patients underwent monthly neurological examinations, MRI's to detect brain lesions and blood tests to monitor their safety.
At the end of this period brain scans revealed that brain tissue damage was reduced by at least 25% in nine of the patients and there were also signs that disability levels had improved.
While the antibiotics are not expensive and are easily available, which would make them an attractive treatment for MS if they were shown to be beneficial, some critics say the study was small, and no comparison was made with patients who did not take doxycycline.
The research will appear in the February 2008 print issue of Archives of Neurology, one of the JAMA/Archives journals.
Posted by TerryK (Member # 8552) on :
Radio Interview talks a little about MS and lyme. Look around 13:40 for some info, there may be more. http://tinyurl.com/Radio-Interview
http://tinyurl.com/adzo4f written by a lyme doctor "Many patients are told that they have Multiple Sclerosis (MS) because of brain MRI findings or a spinal tap was positive for oligoclonal bands (OCB) or myelin basic protein (MBP)."
"The medical literature is quite emphatic that MRI does not reliably distinguish between MS an LD because there is too much overlap in their supposedly distinct appearance and location of plaques."
"Plaques have been detected with both disorders in the brain and spinal cord. OCB's and MBP are non-specific markers for demyelination (loss of sheath around nerves) and do not signify a cause of the demyelination."
"In Miklossy's study above, senile plaques stained avidly for Bb spirochetes. Vincent Marshall reviewed the MD literature in Medical Hypothesis (Vol 25: 89-92, 1988) and advances the notion that LD is causing MS!
His survey revealed that multiple studies prior to 1951 were able to demonstrate spirochetes in the spinal fluid of MS patients (by inoculation into animals and on silver stain of CNS tissues). Dr. Coyle has documented the presence of antibodies to Bb in MS patients (Neurology Vol. 39:760-763, 1989).
The encephalopathy attributed to MS is very reminiscent of LD. Both MS and LD are associated with sinusitis (Lancet, 1986). Dr. Leigner has reported a case of LD which fulfilled all criteria for MS. The epidemiology of MS and the geographic distribution parallels that of LD. The symptoms of both LD and MS can be aggravated if the patient takes a hot bath. Anecdotally, patients with LD, who previously had been identified as MS, responded to antibiotic therapy."