Caregiver

[LindaP50]

Hi all, I am the CAREGiver and Advocate to my husband who has Lyme Disease and Parkinson's Disease. He's the love of my life and I read everything possible in order to talk to his doctors intelligently and with passion.

[MBAnderson]

Lucky guy.

[LindaP50 in reply to MBAnderson]

He's very appreciative and we've never taken one another for granted.

Thanks MBAnderson

[park_bear]

A blog by someone with Lyme disease and Parkinson's:

bobcowart.blogspot.com/

[Hidden]

Linda,

Are you guys making headway against the Lyme Disease? If so, what have you tried in all for that purpose?

Art

[LindaP50 in reply to Hidden]

For almost one year husband was on antibiotics, eliminating as much as possible caffeine and sugar, and taking a variety of supplements including probiotics. Exercise.

Found another integrative center who is under the tutelage of Richard Horowitz! This doctor (actually a nurse practitioner) believes in the herb protocol.

For Lyme and Parkinson's - IV Glutathione is suggested. In the last 2 months he's gotten an IV push which gives him some energy for 4-5 days.

[Hidden in reply to LindaP50]

If you get a chance, you might look into colloidal silver/ silver nanoparticles as it relates to Lyme disease. It tends to have synergy with certain antibiotics and in some cases can reduce built up resistance to some antibiotics while being a broad spectrum pathogen neutralizer with a very good safety profile itself.

Art

[LindaP50 in reply to Hidden]

Thank you. My husband did try the ACS products - 4 different bottles of sprays. No effect for him.

[Hidden in reply to LindaP50]

I looked at that particular product and it comes in 2 ounce bottles and 4 ounce bottles and 4 bottles of either of those two would not be enough to do what you are trying to do even if the product is 200 parts per million. Most commercial products are 20 ppm, so if the products you bought are what they say they are at 200 ppm and lets say you bought the larger 4 ounce bottles, then you had 16 ounces of 200 ppm CS which if you converted to 20 ppm would equate to 160 ounces or 5 quarts of 20 ppm CS and that is nowhere near enough total silver content as it would only be approximately "100 mg of total silver content" . I make my own up to 320 ppm and I consume much larger quantities when actively trying to fight something.

In order to reach blood levels of silver which have shown to be effective in many studies, based on average blood content for the adult human body of 6 quarts, it would take significantly more silver than what is contained in all of the bottles that you purchased (100 mg) to maintain that level in the blood over a long enough period. The problem for colloidal silver manufacturers is that they can not make medical claims and so they can't tell you how much of their product you would actually have to take in order to reach those blood levels used in studies that actually showed results against pathogens. They are just selling their product as a "supplement" or "mineral supplement" and as such, they can not say you would need to take much larger quantities of silver, because then they would have to say why and they can't if they want to stay in business. Some manufacturers used to tell you over the phone how much to use to fight something like hepatitis c, but that has probably become too risky for them to do these days, but it certainly wouldn't hurt to ask a company that has been around awhile like MesoSilver.

There is a reason why some manufacturers of colloidal silver sell their products in 5 gallon carboy containers like these :

purestcolloids.com/mesosilv...

utopiasilver.com/product/co...

Art

[JAS9]

Are LD an PD related? The reason I ask is that 6 months before my first PD symptom, I found a tick between my toes and a few weeks later the tell-tale ring appeared on my leg.

I was tested for LD twice but the results were negative. That was 10 years ago. I live near Yosemite, so our ticks do often carry it.

[Hidden in reply to JAS9]

Similar symptoms and similar effects in some cases. LD has been mistaken/misdiagnosed as PD. Testing for LD has improved, but there are accuracy issues and it is often not caught in initial testing. Testing for certain other bacteria sometimes helps to determine if it is really LD. The bulls eye ring is often a good indicator, but some people never get the bulls eye symptom. PD itself can be tough to diagnose.

lymedisease.org/lymepolicyw...

Art

[LindaP50 in reply to Hidden]

We had a year of going to every doctor under the Sun so it seemed. One said could be "Parkinsonism" and no conventional doctor said it was Lyme. Integrative doctors said it was Lyme and not Parkinsonism (which later on we felt should never had been said).

My husband still has Lyme Disease - the numbers on test keep changing as do the bands. Went to a Neurologist to find out WHAT my husband was fighting. Had a lumbar puncture which showed no diseases, no issues. Then he had a DatScan which radiologist said the loss of dopamine was Parkinson's Disease.

[LindaP50 in reply to JAS9]

From my readings lyme disease can morph into Parkinson's - if your lyme disease caused you to loose dopamine - loss of dopamine is a main sign of Parkinson's.

[Jumex2017]

I’m the same . My husband refuses to want to ready anything about this disease and i have to read and ask. Its not easy. I feel so tired everyday

[ddmagee1 in reply to Jumex2017]

Sometimes, if one is the person living with PD, because it is difficult to deal with, and maybe a concern about future disability, one just doesn't want to know a lot of details about the disease and progression. It's just too much to handle, and absorb at the time. Perhaps, after time goes by, the PWP will want to know more and will read more about it.

[LindaP50 in reply to Jumex2017]

I've read so much caused stress. I had to cut back on my intensity of reading and focus on the care of my husband, and myself! Don't forget yourself.

[Despe in reply to LindaP50]

You've just drawn a picture of myself. I am totally exhausted. . .

[Gioc in reply to Despe]

I am lucky: my wife is very visually impaired and I often take care of her.

Moral : If you have a problem, take care of another bigger one and you will feel better.

Life works that way, you can observe it wherever there are great difficulties.

Gio

[Despe in reply to Gioc]

Gio, I would like to believe that my husband is also lucky to have me. The anticipation of realizing better B1 results for my husband is really exhausting. He started the 3 times a week injections protocol,l and I am very impatient to see if that will work. Cheers.

[Gioc in reply to Despe]

Despe, certainly!

Does life sometimes offer us “too” big challenges? maybe....

We decide when this is "too” much and so we can change it, by our own decision, into "not enough", if we want and move forward in more serene life.

.

Gio

[LindaP50 in reply to Despe]

Step away for a little while. Focus on yourself. Very hard to do, I'm still trying!

[Gioc in reply to LindaP50]

It is my opinion that if you do so you narrow down your area of influence and your capacity, which is by nature divine very large, soon even the smallest problems will seem big.

Try to find a bigger problem and you will be amazed to find out how big and capable you are in managing everything.

This is just my poor opinion

.

With respect, friendship and understanding.

Gio

Traslation by google Traslator

[LindaP50 in reply to Gioc]

Opinions help, I keep an open mind.

For me, I have to periodically take a brief step back from research and blogs, etc. Stress has always shown up in odd ways throughout my body. I don't always feel stressed and then have a pain here or there which turns out to be nothing but stress.

Took my kindle to bed last night and my husband said what are you reading? Replied oh just sample downloads of books. I was reading samples of Parkinson's Disease books. Hubby knows me and my stress. However, my desire to keep him at his best is stronger than anything.

I'll sign off as you did, "With respect, friendship and understanding"

[Gioc in reply to LindaP50]

I understand , me too I did the same.

Our ability is sometimes very high when tested.

In my research, the information often looks the same as the drops of water in the sea, but once you've evaluated it in practice, you'll find what's really useful and what's not.

People here on HU know what is useful and what is not.

Here is a great help. when you read it, almost by instinct, you will know what is working.

Thank you for your friendship.

Greeting from Italy.

Ciao.

Gio

[wifeofparky]

when my husband was alive, I was the one who did all the research and asked the questions. He went with me to our Chapter's Annual Symposiums but refused to go to support meetings so I went alone. After I retired I volunteered to facilitate a Caregiver Support Group so I can help them avoid the pitfalls we encountered.

You are doing a fantastic job but remember to take care of you too, even if it is a day trip with friends or a spa day. Get out once in a while.

[LindaP50 in reply to wifeofparky]

I'm going for a back massage on Tuesday. I bowl on Tuesday nights. My little escape.

[wifeofparky in reply to LindaP50]

Good for YOU!! Enjoy

[Hidden]

Required reading for Caregivers, join my facebook group:

"parkinson's thiamine hcl"

facebook.com/groups/2322600... …

Parkinson's Relief, Questions and Answers

[LindaP50]

Well, my husband fell twice this week. Both times hurting his left knee. The left leg sometimes gets in his way, so to speak.

I'm trying to talk to him about doing more exercises, do more walking but he tells me he can't really walk.

My plan is for both of us to go down the basement where we have an incumbent bike and a treadmill and some hand weights. Figure if we both can start off with stretches together, go on bike, maybe have him go on treadmill (I'll stand by his side) - he'll see that exercise will make him feel better.

Read a lot about fast walking but I'm luck to get him to walk slowly.

Wish me luck with the exercise plan.

[Sandmanliz]

I also know I have lymes And now classic symptoms of Parkinson’s but sinimet does nothing. Would love to chat more with you guys. Sandmanliz@comcastnet

[LindaP50 in reply to Sandmanliz]

I'll send you an email.