Lyme and ALS, what to do when symptoms atypical?

[244]

My mother was diagnosed with ALS in July having experienced lower body muscle weakness resulting in a deterioration that progressed over one and half years. Needless to say we were very upset with this diagnosis. However her deterioration seemed to come to a standstill which gave us reason to believe perhaps she was misdiagnosed.

She was tested at Sunnybrook for lyme and tested negative. However thanks to a suggestion by someone from the Canadian Lyme association we were able to get a referral to another doctor. The doctor said her symptoms did not resemble lyme in that she did not have any fever, stiffnes or joint discomfort. We are grateful he was still willing to send my mom's bloodwork to a lab in the US. This time she tested positive, which is apparently quite typical for people to test negative by the Canadian test, then test positive in the US.

My mother has been on tetracycline for one month now. The doctor did say that it is possible that her symptoms would worsen over the course of the first month, which in fact, has happened. Her fatigue and muscle deterioration have worsened, which has been scary, but also hopeful.

Is there anyone out there who has experienced something similar? How long does anitbiotic treatment usually last for neurological symptoms of lyme? Is it possible to have lyme and als at the same time?

Any information would be gratefully appreciated. I also hope that those of you who have been diagnosed with als consider the possibility of misdiagnosis. You can get more information at: www.canlyme.com

Thanks for taking the time to read all of this!

 

[175]

Hello Lily,
Sorry to hear about your mom.
My father is in a similar situation, first ALS, now Lyme and antibiotic. We, too, can not tell yet if there is any change - need some time before making that call. Many things are hapenning with him, and he only gets few days of not feeling too bad in between -the antibiotic is certainly felt by his system - and if the Lyme Herx theory is correct, then it may be working.
Please, keep posting of any development, as this is so important for PALS to follow. On the lyme forum, there is a similar thread, on people with ALS, now being treated for Lyme.
I wish I could combine and keep track of all posts, to find a common relationship.
My best wishes to your mom and your family!

 

[175]

Lily,
I would like to ask you to please keep me updated on your mom's progress. My father is extremely agonizing over the antibiotic's effect on his hand (weaker in the last few days). He has many other reactions, but this has put him very much on the defence. I, too, am hoping, that this is just the initial response - worse, before better BUT!...so scary, never the less.
Thank you so much for sharing your experience.

Dana,
How is your dad doing?

 

[273]

Lily:

I'm on abx for Lyme. I've noticed some hand weakness and increased fatigue since being on the abx.

There are 5 or 6 of us who were diagnosed ALS and have since tested positive for Lyme. The more we talk about our symptoms and Herx's I think the better we'll all be.

We gain hope and fight fear with knowledge.

Terry

 

[155]

My dad is going through a herx right now, and has been off his antibiotics for 2 weeks. He starts them back up again on Tuesday. His body has become weaker, but I think that is due to not eating enough. He chokes on liquids, and just started choking on food, and is scared to eat. Right now, he is drinking between 7 and 8 Ensures a day to avoid a feeding tube. Dad did really well on the antibiotics and felt better, but 5 months into it, started feeling bad. He started feeling weak, tired, lost his appetite, got an upset stomach, and was feeling depressed. This lasted up until a few weeks ago when he went to see his Lyme doctor, and they had him stop antibiotics because he was going through a herx reaction. Since he has stopped the meds, he has become extremely tired and sleeps more than he is up and awake. I emailed his doctor today, and am waiting for his response because I am worried about dad's extreme fatigue. Dad basically looks very sick right now, and it is one of those "wait and see" things. We are praying for things to pick up and finally get better.
Dana

 

[175]

Hi, you sound down... My well-wishing thoughts go out to your family.
This is so hard - second guessing what we are doing. But what is the alternative?

*We added TOA Free Samento (cat's claw) to the list. In Europe it has been used with success for Lyme.

 

[richard199]

Lily, who was the Lyme specialist you were referred to?

That's the brutal nature of diseases of this type - you can never be sure if you are doing more harm than good - or if anything you are doing is making a difference.

I still have not received an adequate explanation as to why the Drs are so sure I don't have lyme.

Thanks and good luck.

 

[334]

als and lyme

I posted quite a long resonse on the general board for als, but the short version is that there are several people who have been diagnosed with als and yet have lyme. The question is: is most als really chronic neurologic lyme? Antibiotics should be IV for 3-4 weeks followed by one year of oral and very serious nurtitional support. There are some doctors who will offer IV nutritional support on an outpatient basis. Symptoms ALWAYS get worse the first week on antibiotics if it truly is Lyme. I tell patients that they will be as bad as the very worst you have ever felt with your illness up to this point. The reaction will occur approx every 4 weeks while in antibiotics, but will gradually decrease in severity as the Lyme is overcome. Feel free to contact me for more info.

 

[244]

Thanks to all who replied

It seems we are all learning the virtue of patience amidst uncertainty. I am curious are there any people who have recovered after treatment for lyme?

Secondly, as far as I know most Canadian doctors will not give antibiotics through IV. Is this absolutely necessary? Does it make a difference?

Any information would be greatly appreciated.

THANKS so much for your replies...let's keep updating each other so we can stay empowered and encouraged.

Lily

 

[71]

Quick question guys. 2 of you have mentioned Herx's. What exactly is that?
AL.

 

[175]

Hi Al,
If one has the Lyme bacteria, after starting on antibiotics, about 1 week into the treatment, a reaction most often is observed: the antibiotic kills the bacteria, as the bacteria cells die, they release potent toxins; until the body is able to process and flush-out the toxins, a worst-symptoms reaction is observed. People have variety of symptoms when Herxing - headaches, muscle pain, nausia, weakness, tiredness, and more. Some reaction can be deadly - when one is also allergic to the drug.

It is this Herx reaction which is most often used as the tell-tell sign that the abx is having the desired effect on the bacteria. After the initial Herx, about 3 weeks of leveled off follows, then the Herx should start again, and so on. If the reaction stops, then the abx is changed or another one added, to make it stronger or to "fool" the bacteria. Of course, not every person responds according to "text-book" descriptions, but in very simple terms, that's the basics of it. The bacteria is very "smart," it changes shape/form, it hides in skin, blood, enters otehr cells and can not be detected under their cell cover, etc. It is a very hard process. That is why, the main-stream treatment of 2-3 weeks of lower (than needed)dose antibiotic does not do anything and people end up with symptoms re-appearing in a much worse status later on.

In hard cases, where the bacteria has entered into the Central Nervous System, the neurologycal Lyme manifests itself, and that is where big trouble begins.
I will insert a site link for information (have to go to another page for that)

 

[334]

herxheimer reaction

Herxheimer reaction only occurs in people who have Lyme or another L-form bacteria infection, when they begin the correct antibiotics for the infection. So if it occurs when begin doxycycline or minocycline, or zithromax, or amoxicillin plus probenicid - is a sign that the person has an L-form bacteria infection. The Herx reaction is a very "sick" feeling with fever, muscles aches, extreme fatigue, sore throat, etc. It begins 3-7 days after starting the antibiotics and lasts 3-4 days. It occurs because of toxins released from L-form bacteria as they die. (The toxin from lyme is very similar to agent orange molecularly). L-form bacteria in the chronic form are treated with antibiotics for up to 18 months or longer. The Herx reaction occurs about every 30 days when the bacteria is going through its reproductive cycle. Each Herx reaction is usually less than the prior one. Eventually the patient notices that he/she has not had a Herx reaction for 2-3 months and this may be the clue that the infection is under control, if not yet ready for a discontinuation of treatment. Did this answer your question?

 

[334]

Herx, lyme link

infolyme.net has a lot of good info. I have several friends, and a son with lyme. My son has neurological lyme. Fortunately I had health-coached many peoople with lyme and that is how I realized my son needed a lyme test, he had symptoms like my patients!

 

[71]

Thanks. That covered it pretty well.

 

[175]

Here is the site I mentioned in above post:

http://home.goulburn.net.au/~shack/lyme.htm