posted
was diagnosed with als 2003.docs stated they didn't know what to call it but said the only thing it could be was als.symptoms 1st started with left leg dragging,especially in the cold in pa.did not think of lyme until 2004 when i told someone that i had a red rash all over the back of my body=just like the pictures shown on lyme sites.symptoms continue to get worse:loss of fine motor skills in left hand/arm;balance problems-must now use a walker to get around;legs feel like they are there but don't move easily.loss of muscle mass/weakness n left arm and legs.i see dr bur..in west chester-he thinks i had lyme all along.dna and igenex tests come back inconclusive.was on flagyl,cipro and biaxin in dec. and felt like i had mono-was so sick.am on doxi,biaxin and flagel this month.dr.b wants to have a spec scan and put me on 3-4 months of iv as he states we must go at this aggresively.my insurance won't pay for 4 months of iv..i am told not to give up,but i worry that the lyme may be too far gone to allow me to walk normally again or live.any thoughts,please..
Posts: 24 | From pa | Registered: Oct 2005
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posted
An inconclusive lyme blood test is better than having a doctor tell you you have ALS. Doctors have no treatment for ALS because it isn't a disease, it is a discription. Lyme is a disease and can be treated. IV is the best way to go about treatment at this stage, but do so under the advisement of an LLMD or a doctor who specilizes in treating lyme, not one who says he just knows somehing about it. Watch your blood thickness closely. Have the doctor check it often and take blood thinners when necessary. You may also experience a worsening of symptoms due to the abx. It is common and called a herx. It passes with treatment and time. Don't stop the treatment because it appears you are getting worse. It may take months or even years to get better. Giving up is not an option!
Posts: 219 | From Aubur,Al. USA | Registered: Oct 2004
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posted
Gigi's reference www.melisa.org is a good one. Apart from root canals, cavitations it makes the point that removal of all metals is proven to help CFS etc. Go to article section.
This extract talks about CFS
Chronic Fatigue Syndrome & metal allergy
Metal particles enter the body every day, through the skin and through breathing. For most people, this poses no problem but for those who are hypersensitive, it can set off an immunological chain reaction. For most, this is so mild as to be unnoticeable. For others, it can lead to conditions as serious as Multiple Sclerosis. This page looks at how metal allergy can trigger the condition known as Chronic Fatigue Syndrome.
The patient comes in contact with a metal. This everyday occurrence can happen from jewellery rubbing against the skin or from contact with mercury, which is still used in amalgam dental fillings. Microscopic particles of the metal are released into the bloodstream. This happens with both amalgam in the mouth and metal jewellery and is, in itself, not dangerous. These metal particles become ions, and look for a suitable substance in the body to bind to. They normally choose protein, which exists everywhere in the body. When the metal binds, it slightly changes the protein structure. What was once a simple body protein is now a "protein-plus-metal" compound - even though the metal is microscopic. All of the above is a daily occurrence in everyone - whether hypersensitive or not. In a hypersensitive person, the immune system no longer accepts the altered body protein and sees it instead as a foreign "invader". The immune system goes into "attack mode" as the white blood cells start to multiply. They send alert signals to the brain, to let it know an invader has been detected. This is done using cytokines - cells which carry messages to other tissues. The cytokines reach the hypothalamus-pituitary-adrenal (or "HPA") axis. This is the system which alerts the brain to any attack, and tells it that the body needs to be put on "defense mode" to fight an invader. When someone catches an infection, for example, it is the HPA axis which informs the brain that the body needs to rest while the infection is attacked. It also detects situations where adrenalin may have to be released so the body can either fight or run. But in the case of metal-induced CFS, there is no "invader" - just the body's own cells which look different. This is a dangerous and delicate situation. If antibodies are produced to attack the altered protein structure, it will result in autoimmunity - the stepping stone to autoimmune diseases.
The brain is now in a "chronic" (i.e., ongoing) stress situation. The HPA axis is up-regulated and has instructed the body to rest as the immune system attacks the invader. This "attack" will keep going as long as a fresh supply of metal particles is entering the blood stream through the dental metal fillings. A state of chronic fatigue is induced when the HPA axis eventually becomes tired and the brain runs out of cortisone, a substance which calms and steers the body through a period of infection. As the HPA axis is quite resilient, and it can take months to be exhausted. So the allergic reaction to the metal has induced symptoms associated with CFS: exhaustion, difficulty to concentrate, dizziness, muscle pain, double vision etc. How the MELISA� test can be used to tackle CFS
A CFS patient gives a blood sample. It is tested against a range of 10 to 20 metals and the reaction is monitored. In the example we have used above, the problem is dental amalgam. So the blood will react to inorganic mercury - which makes just less than 50% of amalgam. The MELISA� diagnosis is returned to the patient: say "strongly positive" to inorganic mercury. The patient can then have amalgam fillings replaced with another non-metallic material. The decision of replacement should be taken together with a dentist that specialises in metal-free dentistry. The supply of mercury particles to the blood, the source of the original problem, is suddenly discontinued. The body's cleansing system is left to do its work, and most (but not all) of the metal can be flushed out of the system with the help of vitamins. The immune system ceases to be in attack mode. The message is sent to the HPA axis, which gradually returns to its normal, healthy state. The recovery of the patient depends many factors and may vary from immediate recovery to slow improvement over several years Notes: a) Sometimes, people can recover from CFS by replacing their amalgam fillings even if they test negative to metal allergy. This can be because the microscopic particles bind to and block the mitochondria, the energy-producing factories, in the muscle. b) The above chain reaction can be triggered by other seemingly innocent metals, like the gold or nickel in jewellery.
Posts: 654 | Registered: Oct 2003
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posted
Miker, Did the docs perform an EMG on you? I don't understand how they came to the diagnosis of ALS? Do you have clinical muscle weakness that the docs have seen/measured?
Your symptoms sound like many conditions but without more information on what they did to arrive at ALS, when your symptoms started, etc., I can't really say.
I have many of your symptoms and have (and still do) think I have ALS so I have a doc who thinks I have Lyme on one hand and a neuro who thinks I have a metabolic disorder on the other hand.
PM me if you would like...
Posts: 331 | From virginia | Registered: Nov 2005
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
Miker, I have trouble reading solid blocks of print as do some other's here - it's a Lyme brain thing.
So I am splitting up your post and will post my comments at the bottom.
[quote] was diagnosed with als 2003.
docs stated they didn't know what to call it but said the only thing it could be was als.
symptoms 1st started with left leg dragging,especially in the cold in pa.
did not think of lyme until 2004 when i told someone that i had a red rash all over the back of my body=just like the pictures shown on lyme sites.
symptoms continue to get worse:
loss of fine motor skills in left hand/arm;
balance problems-must now use a walker to get around;
legs feel like they are there but don't move easily.
loss of muscle mass/weakness n left arm and legs.
i see dr bur..in west chester-he thinks i had lyme all along.dna and igenex tests come back inconclusive.
was on flagyl,cipro and biaxin in dec. and felt like i had mono-was so sick.
am on doxi,biaxin and flagel this month.
dr.b wants to have a spec scan and put me on 3-4 months of iv as he states we must go at this aggresively.
my insurance won't pay for 4 months of iv..
i am told not to give up,but i worry that the lyme may be too far gone to allow me to walk normally again or live.
any thoughts,please.. [end quote]
Geez, Miker, I am so sorry you are going through all this.
You may be able to get the IV meds pro bono through the manufacturer. Check that out with your doctor.
If you go for a shorter course of IV, then you may get the insurance company to extend it. See if your doc will help you go for that.
There is good documentation that repeated courses of IV may be needed if neurologic problems are involved with Lyme. I believe you can find that on the CDC site - which will carry weight with the Insurance Co.
Also, citing the FDA report on Lyme testing as to the fallibility of all tests out there would be a help too. You will find it on my website: www.geocities.com/ldbullseye.
I hope you will keep us posted on how it goes. Ann - OH
posted
Dr Lida Mattman says MS and ALS are spirochetosis, she covered this subject in her book Stealth Pathogens and at Chicago 2005 autoimmunity conference http://autoimmunityresearch.org/chicago2005.htm
Lyme,MS, ALS are all different spirochetes but all react with borrelia b. fluorescent antibody where ALS spiro is the fastest growing one, the worst from all of them and the last we need. That is why MS,ALS,Lyme symptoms are so in general similar.
Posts: 641 | From Wroclaw, Poland | Registered: Mar 2004
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posted
thank you to all...yes had emg which was inconclusive2003 ...will now get mri spec scan..a scary way to live..if this is living
Posts: 24 | From pa | Registered: Oct 2005
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posted
thank you to all...yes had emg which was inconclusive2003 ...will now get mri spec scan..a scary way to live..if this is living
Posts: 24 | From pa | Registered: Oct 2005
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Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
Sorry to hear about your battle.
If I had ALS I'd be dead by now. I've been fighting Lyme Disease since 1997. Probably contracted it in 1988.
I also use a walker. Since seeing an LLMD beginning in March of 2005 I have been having a big time herx on Ketek, Plaquenil and Doryx. For instance, the joint pain I experience is very bad especially in my right knee. Muscle pain in legs is bad.
I see slight improvement. I am in this for the long haul. Some days the pain will go away for a while and it's like someone turned off the pain switch. I am hoping for more days like that.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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posted
I too was diognosed with als in March of 2000. We do alot of camping on weekends and have freinds in PA where we camp. One of these freinds brought up when I had 2 bites on my neck and a rash shortly after. These freinds knew a little about lyme cause of living in PA. I started reading about lyme on the internet and checked it out with a lyme doctor.I was tested and it came back positive along with the pictures. Don't ever give up hope, they gave me 2 to 5 years and I'm still here fighting. I use a walker but I'm fighting to get better! Posts: 58 | From Andover,Ohio,USA | Registered: Nov 2003
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Even though I had a CDC positive igg the morons I was seeing way back when told me I had ALS or MS and a host of other crap.......
There ARE studies that link MS to the borelia spirochete... There are suggestions that another such spirochete may be responsible for ALS...Symptoms.
I suspect this may be true...however having had infantile paralysis and subsequent ALS and MS symptoms I can't rule out that the main etiology(reason or cause)
for ms and als and cfs and fm is lyme disease...period...possibly with a little help of the co-infections...
However given how syphilis used to affect it's hosts and it being a spirochete...I strongly suspect that B.Burgdorferi is the only culprit.....
Hang in there Miker.........zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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