posted
I know this sounds crazy, but I'm debating whether to say much to my son about Lyme. He was just diagnosed with Lyme and the doctor prescribed him antibiotics with a lot of refills. She also is giving him ATP shots as his immune system is out of whack.
He has been really pretty sick for the last couple of years. I'm not sure how much is his life and perhaps how much is Lyme, but he has been under a considerable amount of stress. His blood pressure is high - last BP - 147/111 - high for a 35 year old who works out - especially the bottom number.
He has had extreme pain in his joints and all over. His glucose levels are somewhat high. He has terrible GI pain, horrible insomnia, GERD, pancreatitis.
When he went to the doctor and they told him he had Lyme as well as his BP, glucose, EBV and AMP off, he was devastated. At 35, newly married, trying to get his life together, it just shook his world.
I have been diagnosed with CFIDS for 20 years, so i know he does not want to have a life like mine. I wanted to put a positive spin on it. I told him that he now knows what has caused a lot of his problems and that he can take antibiotics for them, something that would not help CFIDS.
He was encouraged and feeling like he will be a new person in the next month or two.
But as I am reading the posts, also the book Cure Unknown, I am realizing that there is nothing easy about this disease. Since it appears he probably has had this disease at least 8 years and maybe his whole life, I'm not sure how quickly or how easily he will recover.
He desperately needs to have some stress relief, as it's been almost unbearable.
I did tell him there was controversy over treatment, and some say perhaps IV antibiotics might be needed, but I have not let on, how serious this is.
How much should I tell him? He obviously is not into researching illness. The last thing he wants to talk about or think about is being sick. So I'm balancing not stressing him further, and not wanting him to have a negative outlook - with wanting him to jump on this and do all he can to save his life.
It may seem black and white to some, but I'm very worried about his emotional health. He is just now in a hopeful state.
Posts: 132 | From Texas | Registered: Apr 2012
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posted
He will eventually do searches on his own. I would be shocked if he hasn't already done so.
YOU also need to be checked for Lyme. Many with CFIDS have Lyme as the cause.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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TerryK
Frequent Contributor (5K+ posts)
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posted
I agree with tutu. I was diagnosed with CFIDS and fibromyalgia for years before I found out I had lyme. YOU need to be checked ASAP hopefully by an ILADS educated LLMD because short of that you cannot be sure if you have lyme or not despite what testing shows. Also, co-infection evaluation is very important because lyme patients with long term illness usually have co-infections.
You know much more about what your son can take than any of us but from what you've said I would go VERY slow with information unless you see him doing something that is harmful like stop treatment. Aside from that, maybe eek the info out a little at a time depending on how he is doing.
The only thing that really concerns me is that it is unrealistic to think that it will only take a few months of treatment for someone who has been really ill for awhile. He may get discouraged and quit.
I don't want to discourage you but I did not have significant improvement until after 3 years of heavy duty treatment for lyme and co-infections but I had been really sick for 2 decades. Then had some big gains. There are ppl who respond quickly, especially those who do not have co-infections but I think that is not the common scenario that I see on this list.
Everybody is different in their response to treatment but I might try to get him to rachet his expections down a little.
fflutterby
Frequent Contributor (1K+ posts)
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posted
Yes, I agree with both Lymetoo and Terry. There is lots of hope for both of you. Get on the right track with a good doctor. I am not saying it is easy just saying there is hope.
-------------------- Psalm 46 1 God is our refuge and strength Posts: 1367 | From North Jersey | Registered: Sep 2010
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posted
I'm not sure if I am responding correctly to everyone's post - please let me know if I should be doing it another way.
Lymetoo - I guess I have spoiled my son and my family and friends. I'm the researcher in the group. They trust that I will not only inform them, but in their opinion - OVER inform them!
My son is a struggling film maker and the only research he does relates to film. He absolutely does not want to think about illness.
He does have the benefit of having me as a parent, I understand how difficult it is to have a chronic disease. He is not going through the trial by fire that many of us do in trying to be understood.
Posts: 132 | From Texas | Registered: Apr 2012
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Lymedin2010
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posted
I say tell him what you know and encourage him to read and continue to seek out various treatments.
This way he does not simple mindedly accept just any treatment and learns to work with LLMD's wisely. He needs to question treatment that may not be working.
Taking the approach that since I am getting treatment, I must get well soon could be detrimental. Without proper and sufficient treatment, he could get worst quicker.
He could also resent you if he knew you were hiding life and death information. The truth DOES stink, bit we have all learned to deal with it.
Posts: 2087 | From NY | Registered: Oct 2011
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posted
Lyme disease is a very complex disease and it takes time for those suffering with it to see improvement. There is always hope.
Your son will get better, but he needs to be under the care of a skilled Lyme-literate doctor (LLMD) to do this. I'm assuming your son is under the care of one?
Lymenet is an invaluable source of information. Read everything you can here and learn. What works for one may not work for another.
I, like you, am the researcher in my family, always looking for help for my teenage son. I only knew Lyme disease was caused by a tick bite - turns out any biting insect can transmit it and mothers pass it on congenitally.
You know your son the best. He has gone through some stressful life-changing events in his life, i.e. getting married and finding out about his illness.
I agree with others that you should give him as much or as little information that you think he can handle, but always stress the positive. You should also be checked out by a Lyme-literate doctor.
Please know you are in my prayers. You're a great Mom who loves her son very much. Never, never, never, never, never, never,never give up!
Posts: 8981 | From Illinois | Registered: May 2006
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Keebler
Honored Contributor (25K+ posts)
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posted
- How much should you share?
First, that lyme can be fatal if untreated.
Second, that only a few doctors have the knowledge to treat.
Third, that you cannot be his doctor.
And that he's lucky to have you but it's time for him to learn on his own about this, not just be told.
I would give him LINKS but do not take on the task of being his own brain. He needs to read this, hear this for himself from the experts.
It's his responsibility to take some action for himself.
Sadly, though, lyme is a very expensive endeavor. Not everyone can afford a LLMD but, then, it's vital to delve even deeper into articles and books by LLMDs and try to carve some plan that could help.
He will need to find his local lyme support group to learn of ways to manage all this.
(What ILADS is) . . . WHY you need an ILADS-educated, Lyme Literate Doctor - starting with assessment / evaluation. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- As he is a filmmaker, he might be interesting in watching this. It's the first action I suggest ASAP. -----------
Success & Progress posts -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Ellen101
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posted
I think given his age you need to share it all. He is npot a young child. He needs to learn as much as he can about this disease so that he can advocate for himself. As parents we naturally want to protect our kids, but he is an adult and the best help you can give him is to enable him to obtain the skills and info he needs to get better.
Posts: 1748 | From United States | Registered: Dec 2011
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surprise
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posted
Right, my first thought was: He is 35! He needs to know, and with that comes great hope that his quality of life will improve.
It was a HUGE shock for me to learn I had Lyme disease, at age 44. I had NO clue.
But, my symptoms I had been experiencing for years, which I kept inside, were not good thoughts:
I was convinced I was on my way, and early, to Alzheimer's because of my memory, thought perhaps I will get dx'd with MS because my nervous system would fail,
and that my chronic fatigue was because I was a bad mother, not doing all the things 'normal' mothers were doing.
These are self negative torture thoughts- and when I accepted and was dx'd with Lyme and Bartonella, looking back over my life, it all then made sense to me.
So, one the other hand, it may bring a sense of relief to find out it is disease related, AND, you can get better!
People around me did not know I was living with these thoughts and fears.
Sounds like he has not been on antibiotics, you may want to get the 'Advanced' test for Lyme done (can't remember the lab, sorry, but it does need to be through an LLMD)
It is deemed to be 80% accurate (so if it comes back negative, there is a 20% chance it is a false negative)
and it comes with a picture of a spirochete (Lyme in your blood) to really hit the positive home.
Also, our personal experience in beginning to test (labcorp WB) only positive band 23-
Yes, it indeed was Lyme, cemented with further testing.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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nefferdun
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posted
I agree completely with Keebler. If he does not take it seriously he will never get well. He can't drink alcohol or eat sugar. He needs massive amounts of antibiotics and antimalarials. Recovery is a marathon, not a sprint.
I would not worry about being the bearer of bad news. If he is with a Lyme Literate Medical Doctor he will quickly learn how serious lyme disease is. If he is expects to recover at all, much less quickly, he has to be completely committed to all aspects of the recovery process. He won't be if he does not grasp the seriousness of it all.
Besides borellia and all the co-infections, you should both be tested for methy cycle mutations and the FL1953 bug both of which are linked to CFS. Then treat accordingly. Get as much information as you can as soon as you can or you will waste valuable time; not just months - -years!
The reason I have taken so long to recover is 1. I did not know how many infections I had - ignorance and denial. I would continue treating for one infection when another one requiring different medications, had taken over. So for months I would be taking drugs that were not effective against the infections that was dominate. That is where a savvy doctor comes in handy.
2. Methyl cycle mutations affected my ability to detox so I couldn't tolerate the high doses of abx necessary to recover. My blood was hypercoagulated because of the mutations (as well as the disease) so medication could not penetrate deeply into the tissue and my cells were not well oxygenated (which Bb loves). These mutations cause metals to build up which also contribute to disease, CFS and fibromyalgia.
3. The FL1953 bug requires a low fat vegan diet to kill the biofilm. Most of us have this organism but we are eating a high fat animal based protein diet. When I switched diets, I felt much better. One of the most common methyl cycle mutations causes excessive amounts of ammonia to build up when you eat animal protein; another reason to go vegan.
Has it ever occurred to you that something is causing your CFS; that you didn't just walk out the door and get hit by a stray bullet? You can find out what that something is and get better too.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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AuntyLynn
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posted
That Hulu link IS GOOD. In fact, "Under Our Skin" is listed as one of Hulu subscriber's "favorite movies."
I suggest you watch the movie WITH your Son - let the movie educate him, especially since he is a filmmaker himself, he should gain extra appreciation for the the way this information has been presented. Moreover, if you watch it together, then you can be there to answer any questions he may have right away.
He's a BIG BOY Mom - with a WIFE. And the Jury is still out, as to whether Borrelia Burgdorferi can be transmitted sexually. (But for my money, since it looks like syphilis, is as aggressive as syphilis, and causes the same long term neuro symptoms as syphilis ... take an educated guess!)
Perhaps I'm being a bit blunt, but just how do you think your son and his wife would feel if they have decided to start a family ... and your daughter-in-law starts suffering multiple miscarriages, or worse? Especially if they learn that you had information that could have helped them to prevent such a tragedy, beforehand?
I admit, I've never been a mother. But I think you are playing with fire to even consider holding back what could amount to a "life and death" decisions by your kids.
It may be time to cut those overprotective apronstrings.
[ 05-07-2012, 06:04 PM: Message edited by: AuntyLynn ]
Posts: 1432 | From New Jersey | Registered: Jan 2012
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Keebler
Honored Contributor (25K+ posts)
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posted
- I'm glad nefferdun is on her toes. And TuTu and TerryK.
I had not read the previous posts until just now so had missed that you, yourself, have been with a working diagnosis of "CFIDS".
I'm sorry to hear that your doctors have not alerted you that, most often, CFIDS is CAUSED by some kind of stealth infection - and often lyme.
I was misdiagnosed with: fibromyalgia; CFS; MS; lupus; various psychiatric dx.
Then, after decades, positive for 3 different tick-borne infections and 3 other stealth infections - and adrenal dysfunction (caused by lyme). Postivie Celiac and Porphyria diagnoses also helped explain a great deal.
The majority of those with lyme have been previously diagnosed with "fibromyalgia" or "CFS" so I hope you can look at those links in the "Diagnosis" thread.
If not lyme, or in addition to lyme, there are other chronic stealth infections to consider. Many get better with the correct diagnosis that has caused the symptoms that fall under the umbrella of CFIDS.
The CFIDS association's research has saved my life, with their understanding of exercise intolerance, especially. Even they have had articles about lyme and other stealth infections as the CAUSE in some cases.
But too many "CFS/CFIDS" doctors just ignore the infection connection.
Other than that, conditions such as celiac, & certain liver conditions, need to be assessed. All that is in the "Diagnosis" link above.
Best of luck to you both. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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AuntyLynn
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posted
BTW it is Advanced Labs that offers that new CULTURE test. It's a blood test, and it costs $595.00
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You say he is newly married. His wife also needs to learn about this and also be assessed.
I know this is a lot to take in but I sure hope love and commitment can lighten the load. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Above all, be sure to tell him right away not to let any doctor give him steroids of any kind--not pills, not shots, not nasal sprays, etc.
"More evidence has accumulated indicating the severe detrimental effects of the concurrent use of immunosuppressants including steroids in the patient with active B. burgdorferi infection. Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course. If immunosuppressive therapy is absolutely necessary, then potent antibiotic treatment should begin at least 48 hours prior to the immunosuppressants." (page 12)
Emphasize to him all of the no-nos that a person with lyme must know to get well.
"There are three things that will predict treatment failure regardless of which regimen is chosen: Noncompliance, alcohol use, and sleep deprivation. Advise them to take a break when (or ideally before) the inevitable mid afternoon fatigue sets in (napping is encouraged)." (page 17)
"CERTAIN ABSOLUTE RULES MUST BE FOLLOWED IF LYME SYMPTOMS ARE TO BE PERMANENTLY CLEARED:
1. Not allowed to get behind in sleep, or become overtired. 2. No caffeine or other stimulants that may affect depth or duration of sleep, or reduce or eliminate naps. 3. Absolutely no alcohol! 4. No smoking at all. 5. Aggressive exercises are required and should be initiated as soon as possible. 6. Diet must contain generous quantities of high quality protein and be high in fiber and low in fat and carbohydrates- no simple carbohydrates are allowed. Instead, use those with low glycemic index. 7. Certain key nutritional supplements should be added. 8. COMPLIANCE!" (page 27)
WPinVA
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posted
JBS - You sound like an amazing mom with the way you are looking out for your adult son. It sounds like you have a good relationship with him, so perhaps you could just let him know you're concerned and doing the research and ask him how much he wants to know?
A few areas though where I'd recommend pushing ahead (even if he is reluctant):
1) making sure he's getting the right treatment (for starters, he needs to get to an LLMD and be evaluated for co-infections); and
2) making sure he's taking precautions not to spread it to his wife. As I understand it, the science isn't settled, but many reasonable people are convinced it can be transmitted sexually, and perhaps even via saliva.
Posts: 1737 | From Virginia | Registered: Aug 2011
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posted
Wow! Thanks everyone for such great advice! Believe me, I am not only reading each one, but I am printing them out to spend time on each one.
Just a few thoughts right off -
I think I am out there doing all the research BECAUSE I have had a chronic debilitating condition - so far diagnosed with ME/CFS and Fibromyalgia. I understand what a quicksand it can be and I want to do what I can to help my son and his wife not go through what I have for the last 35 years. If I had not been ill, I would have left it entirely up to them.
I am also very concerned for his emotional health. I probably will make a new post to get some feedback on Lyme's affect on one's ability to deal with stress, etc. He does have a lot of real stress in his life - not the least of which is enormous medical bills, school loans and struggling with losing jobs because of his health.
They need to move out of their apartment that had black mold in it, but finances are limiting what they can do. But in the past, he has been able to handle the stress. Now, the slightest thing, just sends him downward.
I read the admonitions to get sleep, but that is one thing he really struggles with. He gets maybe 3 or 4 hours sleep many nights and then can not go back to sleep. That alone would make his stress levels high.
From the information from his doctor, he just needs to take antibiotics for a few weeks and he will be fine. He hasn't had much of a reason to do further research, based on his doctor's information. And with his finances, he really wouldn't be able to do much even if he did do the research.
I will have to figure out how we can all go to a LLMD. If I was able to find out I did have something other than ME/CFS and I could receive treatment, it would be really a miracle for me. Of course, my main focus is my chicks to be well!
Thanks again for the input, I'm going to pore over each one!
Posts: 132 | From Texas | Registered: Apr 2012
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TF
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Member # 14183
posted
Lyme affects the sleep center of the brain, so inability to sleep is a classic lyme symptom.
With good treatment, that can go away. With lousy treatment, it won't go away.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Black mold can be very serious, even deadly. Now, maybe not all types but if this is the most toxic type, they need professional advice.
If they are renting and living with black mold, the owner has a responsibility to address that professionally ASAP.
They should be offered an apartment that is mold free, first -
- but also to have professional mold remediators advise them on how to safely pack up belonging, how to clean what can be cleaned and then how to dispose of what may be unable to be cleaned if contaminated.
It's a very specific manner of utmost importance so they don't pack mold spores as they move.
First priority: get away from that mold.
Lyme treatment is not likely to help until that is done. The ATP shots for the immune system don't stand much chance of working UNTIL they are away from the mold.
It's surprising that his doctor has not addressed this.
In fact, taking antibiotics while immersed in mold can be detrimental as the fungus can grow worse in the body.
I know this may seem impossible but they must get away from black mold ASAP - today. They should also be assessed medically regarding the mold.
IDENTIFYING ENVIRONMENTAL ILLNESS & MOLD EXPOSURE IN PATIENTS WITH PERSISTENT LYME DISEASE.
Lisa L. Nagy, MD Video $15.
(She is NOT A LLMD, however, she understands the kind of toxicity issues faced by many with lyme. She did not have lyme but overcame very serious MCS. She spoke at the recent ILADS conference.
It's a great presentation to see. The DVD can be ordered. Great detail about toxicity issues also here:
tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
Have you ever been to any sort of alternative, integrative, naturopathic, holistic, or osteopathic physician or have you always gone the conventional route?
I suggest you get to an ILADS LLMD and if you can't afford it get to one of the types of doctors I mentioned above. You and your son. And, HAVE HIM GET AWAY FROM THE MOLD!!!
The problem with a CFS diagnosis is that it really is not a diagnosis. It is a name or label for a bunch of symptoms. The key is to find the underlying cause for the illness, not just put a label on it. That doesn't fix anything.
As someone above stated, most of us have been misdiagnosed with many things like, MS, CFS, lupus and so on before getting diagnosed with Lyme. Furthermore, Lyme is NEVER just Lyme.
The immune system gets so overwhelmed that there is almost always co-infetions like Bartonella, Babesa, Ehrlicchiosis, EBV, Mycoplasma, HHV6, Candida, Parasites and more. Also nutritional deficiences, methylation issues, porphyria and so forth.
The immune system is so dysfunctional that it can no longer effectively deal with anything including infections that are normally kept dormant in individuals with healthy immune systems.
Like EBV for example (Mono), most people have been infected with it at some point in their lives and after getting over the acute infection it goes dormant but is still in the body. For us it is reactivated b/c our immune systems can't keep it under wraps.
Tell your son to come to LymeNet. This is where I've learned most everything about my illness, including dangers of mold. Yes it is depressing but he needs to be informed.
I wish you both the best of luck. Knowledge is power and you are both on your way to finding the path to get well. Best wishes.....
Posts: 2541 | From Northeast | Registered: Jan 2008
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Dr. S is a Lyme-literate psychiatrist who had Lyme herself.
You can click on "E-mail me" in the upper right-hand corner of her webpage and ask her for help or suggestions.
You might also want to click on "Support Groups" in the upper left-hand corner of the Lymenet page, then "TX". Contact information will come up. Maybe they can help you.
I agree with the other posters that your son & his wife, as difficult as it may be, need to educate themselves about this disease and take the steps to start the healing. Being under the care of a Lyme-literate doctor (LLMD) is vital.
Posts: 8981 | From Illinois | Registered: May 2006
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TerryK
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posted
I agree with tickled, impress upon your son how important it is to get away from the mold. Those who have a genetic inability to detox mycotoxins will not get better unless they get out of the mold. Some States have laws that require landlords to deal with a mold problem.
Of course ideally it is best to get your son to learn about lyme disease for himself. I have found that several of my family members (siblings) who have untreated lyme disease get overwhelmed easily and tend to give up. A friend I had known for 10 years got lyme disease and could not tolerate learning all the details because it terrified her. 3 years after diagnosis she is much more able to dip into the lyme pool of knowledge.
I encourage you to use your best judgement as to what you think your son can handle. You may be able to slowly encourage him to learn about his illness on his own but from my own experience it is best to proceed with caution.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
I would try to talk to your son's wife. She is the one who will most likely be going with him to doc appointments.
I do all the research and go with hubby to all appointments. He hates to talk about his illness. Sometimes he obsesses about it but other times I have a hard time getting him to share details. And he can get really irritable if I am constantly asking him questions.
I try to find some time at least once a week to ask general questions about various symptoms and his meds. I count out his supplements but he is in charge of his meds. He usually tells me if he is going to make a change but a few times he has done things on his own and not told me until afterwards.
I don't tell hubby everything I read but just give him the big picture. There are certain people on lymenet that we discuss who have similar symptoms or if they are on the same meds I might print out a post or two for him to read.
Your son does need to know that it could easily take 2 or 3 years to get well or maybe even longer. Thinking that he will get well in a couple of months is unrealistic and counterproductive in my opinion.
This is not medical advice, just my opinion based on hubby's experiences.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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AuntyLynn
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posted
I like Siebert's suggestion that you speak to his wife! She would likely be just as competent at gaging what information her husband can and can not handle, and at least you will have alerted HER that she might need to be diligent in protecting HERSELF!
Moreover, if your son is seeing a doctor who thinks that "a few weeks of antibiotics" is going to get rid of a problem he has had for 2+ years, this doc might be empathetic, and trying to help, but he is obviously NOT an LLMD! Take the advice of so many here who "trusted" the medical community, and got the proverbial runaround, spending way to many years (and dollars), while continuing to suffer!
ALSO EVERYONE, thanks for all the great LINKS you have posted in this thread!
LymeToo, that list you posted is a wealth of info, much of which I look forward to studying, even though I have been an avid "Lyme student" for 5+ years.
Good luck to you, and your families!
Posts: 1432 | From New Jersey | Registered: Jan 2012
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