posted
My mom has had "fibromyalgia" for years and years. Now that I'm aware of the connection between Lyme and fibro, I really think she's got Lyme. She has symptoms that I'm seeing more of lately (both symptoms I haven't seen before as well as increased severity of ones she's had), and I'm kind of worried for her.
She's 73 and has always been quite healthy (except for back pain from scoliosis), but her quality of life is definitely being affected at this point. Even 6 months ago I would've said she might be here for another 15-20 years, but I'm not as confident about that now.
So my question is, knowing how bad you can feel during treatment and how long it can last, would you recommend treatment for your mom if she was in the same situation?
It's tough, because there's also no way to tell how bad the symptoms might get without treatment. This disease is so f**ked.
Posts: 112 | From USA | Registered: May 2016
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TF
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Member # 14183
posted
Take it one step at a time. She may not even want to be tested. If she agrees to testing, she may not like the price since Igenex doesn't take insurance.
If she gets tested, then see her reaction to the results. Go from there.
So, just start out asking her if she wants to find out if it is actually lyme disease. If you want to show her a short video on lyme, that would be a good idea. See how interested she is and if her tests are positive, then see if she wants to learn more.
A Boston TV station did a show on the lyme disease controversy a few years ago. Here is the Boston Chronicle video on YouTube:
You may want this to be the video you show her. It explains the lyme disease controversy and the role the IDSA plays in making it difficult for a person to get good lyme treatment.
If I were her, I would certainly want the information and want to make my own choices.
Posts: 9931 | From Maryland | Registered: Dec 2007
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TF
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If your mom has Medicare, then she will not have to pay for Igenex testing. Igenex takes Medicare!
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
I felt that my mother had Lyme but I was pretty sure she would not benefit from treatment. She was in an assisted living facility by that time and had had 3 strokes already.
I knew that she wouldn't even be able to convey to me or others about any herxing she might have, etc. I do believe I made the right choice.
She lived 5 more years after my finding out I had Lyme. We had both had lyme for many many years.
Weigh all your options and think it through. It may be worth it for your mother if you can help monitor her progress.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Tincup
Honored Contributor (10K+ posts)
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posted
With older folks- Hey! I'm not there yet!
It can be difficult. What I've seen is a slow start to treatment and as able the doses continue and increase.
My personal theory. If you have 30 symptoms and can reduce one or even 10 or 20 of them so you aren't so miserable, why not try?
Plus, it could prevent a worsening of the situation and shortening of her life. Since she is generally healthy and not sickly and frail, you might consider it?
Hope she and you find some answers and some relief.
Tincup
Honored Contributor (10K+ posts)
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posted
One more thing.. have you been tested for MTHFR? If you have the condition she and or your dad would too. If she has a mutation the treatment would need to be adjusted (lowered) so the herxes aren't killers.
posted
I actually didn't feel bad from treatment! I put myself on clindamycin antibiotics 150mg 4x/day like I'd done for a previous finger infection when I found out I had Lyme, and the fibro pain went down daily, until by the end of a week, I had no more pain! Wow.
I herxed on it after a month and backed down to 2x/day, for 5 years, until it didn't work anymore.
Now I take capsules of turmeric to reduce joint and muscle pain, which it does very well, and without causing any suffering whatsoever.
Describing my personal experience treating fibro, not because I'm saying do as I did and do, but to show you treatment for Lyme symptoms isn't always painful.
Btw, I'm a difficult detoxer and allergic to alot of stuff, so I can't even take the meds that can cause a strong herx reaction.
We're all different and need to find what works for us. I always say start slowly so as not to create a big herx.
Posts: 13171 | From San Francisco | Registered: May 2006
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Carol in PA
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posted
quote:Originally posted by Tincup:
If you have 30 symptoms and can reduce one or even 10 or 20 of them so you aren't so miserable, why not try?
Yes, I agree with this. However, you don't need antibiotics to reduce your symptoms.
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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If you have 30 symptoms and can reduce one or even 10 or 20 of them so you aren't so miserable, why not try?
Yes, I agree with this. However, you don't need antibiotics to reduce your symptoms. [/QB]
- I agree! Also consider Mast Cell Activation Disorder as part of the puzzle.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Brussels
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I would try homeopathic treatment. You feel much less crap with it, it is very mild in comparison to most treatments!
Posts: 6200 | From Brussels | Registered: Oct 2007
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-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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lightfoot
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posted
Good suggestions, IMO! An otherwise healthy 73 year old ought to have the information, be well educated and decide what direction to take.
There are many cases where a person of her age went into treatment and did very very well!!!
I wish my dad could have had treatment.....we knew nothing of Lyme when he went so rapidly downhill. Once I was diagnosed, it was crystal clear that he was suffering from Lyme and co-infections.
-------------------- Healing Smiles.....lightfoot Posts: 7228 | From CO | Registered: May 2002
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Brussels
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posted
Sorry for late answer:
For lyme, there is a series of nosodes of borrelia and bartonella. EAsy to take, out of any danger.
I think Deseret biologicals still sell these nosodes.
Other homeopathics are supporting substances like Lymphomyosot, Hepar comp, stuff like that. Easy to take, very non-invasive. You can take a look at Heel and PEkana products, I like them.
For other pathogens, there is Sanum Kehbeck products: they help with many types of candida, strep, staph, stuff like that. Very efficient in my experience. I use these for at least a decade for all sorts of problems.
then, of course, there is classical homeopathy: you got to make one consultation with a professional.
Homeopathy is HUGE. there are loads of modalities of homeopathy.
Without it I would be still ill, I'm sure. It was A GREAT help in my case and my daughter. She had got lyme since age 2, and also totally healed, after MULTIPLE bites.
We used all the approaches above. Classical homeopathy helped the least, I think, even though I wouldn't discard it, as it may help treating very basic problems.
With children, I go through the same problem as with older people. It's hard to find treatments for both groups. Children may not take all those aggressive chemicals either.
My daughter just went downwards on chemicals.
I hope this helps.
Posts: 6200 | From Brussels | Registered: Oct 2007
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Brussels
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posted
Another thing I forgot: my daughter took MANY herbs, many Buhner, Cowden, Chinese herbs, with TEARS in her eyes.
I forced her to take these, bribed her.
Homeopathic pellets were so different: she loved them, and even asked for them, when she didn't need.
Homeopathy is MUCH easier, even than herbs, in that sense too!
Posts: 6200 | From Brussels | Registered: Oct 2007
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Judie
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posted
Kris Kristofferson just started Lyme treatment and he just turned 80.
I don't believe it's essential to have a horrible herxheimer reaction to have improvements. It's different for everyone.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
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posted
- Judie,
Thanks for that link. Glad he's on the upswing.
Sad that so many of the comments are just horrendous, though. And one Facebook page is just cruel for all with lyme / morgellons - someone posted "imaginarian" led to that. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Gee, this thread could have been started by my daughter . . . I'm 73, have had fibromyalgia for decades, and have scoliosis. :-)
I've also been diagnosed with Lyme, Babesiosis, and Bartonella. Medicare paid for my IGeneX tests.
I've wondered if my age should factor into treatment, and thought about polling this board to find out how many people are over 65. But I haven't, possibly because I rarely think of myself as this old.
I tend to react to meds, and I declined two anti-malarials that my LLMD prescribed. I also stopped taking Zithromax after getting scary heart symptoms. This happened even though I'd taken it years ago without a problem.
I've been on doxy for four months (this time), and quit a couple of weeks ago, but started back up when I got bitten again. Three bites in two weeks despite precautions.
I've saved Brussels' comments about homeopathic remedies and plan to pursue that avenue. Homeopathy has helped my family with other conditions in the past. I also bought two of Buhner's books. Clearly, I need a new plan..
Best of luck to you and your mom.
Posts: 119 | From Pennsylvania | Registered: Jul 2010
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Brussels
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You are not old Alisandne. If you don't feel old, that's who you are!!!!
Glad to know homeopathy helped your family. It is a HUGE TOPIC, homeopathy, many different schools etc.
for lyme and candida, I think NOSODES are one the most precious tools I had, even though many homeopaths do not agree.
And to help the body work again, such as hormones, lymph cleaning support, liver support, etc, I do think many German products work well too (Heel have very good combination of products for that).
Dr. K is also proposing now many hormones in homeopathy in Biopure. MUCH superior than any chemical hormone (or even the bio identical hormones), according to him.
Posts: 6200 | From Brussels | Registered: Oct 2007
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posted
Thanks, Brussels. I think this is definitely worth pursuing. I appreciate the info!
Posts: 119 | From Pennsylvania | Registered: Jul 2010
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