posted
"Crying? It is all about the pain, inflammation and likely irritated nerve endings. And she may be feeling much sicker than usual, even if better in some ways."
Yes she says "This thing is killing me!" as in the disease eating her up with the pains. We ask her, where and what does it feel like. She says in the knees and wrists and that it feels like tearing and ripping mixed with Indian burns.
"Massage and magnesium & liver support to manage herxheimer are the best helpers. Refer back to the Liver support link. Working with the hospital can be tricky but they may work with her on NAC, glutathione and magnesium."
We brought this to their attention and asked if she will be monitored even for spleen function and they nodded yet. I believe they are trying to not say to much because of the other people around.
"Acupuncture may be available at some hospitals, too. And (depending upon the state) medicare and Medicaid often cover acupuncture for pain management. Some hospitals have acupuncturists on staff, often in the cancer departments."
The ID did recommend Acupuncture and we will be ordering to speak to a pain management. Was thinking to even ask for cannibus oil from the dispensary if they will allow it and if it does help?????
"Plant based? Definition here can vary. A plant based diet could mean just a lot of good vegetable and low sugar dark fruits along with meats, fish, eggs but that the plants are the majority of the meals.
Three eggs is a good start for the day, providing 18 grams of protein - along with a vegetable and a dark low sugar fruit, maybe some amaranth or buckwheat groats.
But if you mean only plants for food, Not sure why that would be unless she is vegan already. I could not survive a vegetarian diet and I gave it years. I get very ill & weak if I don't get eggs, chicken, beef, fish."
Thank you for this. I am going to hand this exact plan you wrote here to the dietician because she did have concerns for the vegetarian like diet due to her needing proteins.
"Buhner states that muscle meats are required in order to get better. Cleaner sources are best, of course.
Some may do okay with just plant based diet but let her decide what her body is telling her in that regard.
In a hospital, a vegetarian diet is likely to include a ton of gluten as they are often the "glue" in "meat like" entrees."
This makes so much sense. I did not realize the hospital in a sense cannot honor their meal ingredients. Ive been reading into Buhner and I really like his state of mind. I ordered the knotweed as well as the others I had on hand thank God.
One thing for sure is she is sleeping better but with the evil spasms that have continues since 2000 nightly and religiously. They always come at night. Does anyone else suffer the early AM hours till day break with these spasms?
No stomach issues or headaches YET- and I think bartonella might be in hiding because the hot feet have not returned yesterday. We will see tonite though however. I hope her story and this timeline of her treatment helps anyone out there who might need it. We often look for Lyme stories together and I read them to her for encouragement.
Posts: 80 | From NY | Registered: Feb 2014
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Keebler
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- Turmeric capsules -- and turmeric in foods. It's great in lentil soups, cauliflower, etc.
Turmeric and it's stronger extract, curcumin, are helpful to relieve some pain. However, curcumin can be too strong for tender gallbladders so I would have her avoid that right now while on rocephin.
Turmeric, starting with food use, and them maybe working up to a capsule in the middle of a meal might be good.
From: The One Earth Herbal Sourcebook (Tillotson, et.al.)
. . . SAFETY ISSUES: Due to mucin-reducing effects, do not use the concentrated extract (curcumin) or oil in high doses, especially if you have bile duct obstruction, gall stones, or stomach ulcers. Use turmeric as a spice freely. . . . -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
As well as Planetary Herbals Brand called Stone Free.
Posts: 80 | From NY | Registered: Feb 2014
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Keebler
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- IMO, though others may think differently:
Turmeric does not really work as a tea and to mix the powder in water tastes horrid. I can barely slosh that down and not barf it back up. And it can irritate the mouth & lips, also a choking risk as it's hard to mix in water and not get powder stuck in throat as drinking.
I've done it but I've learned to be very quick with the "wash it down water" - but it sits better with food in stomach, not alone.
I do not recommend it as a "tea" at all. Put in food or get capsules. It's perfectly delicious in a prepared meal. You can stir in after the food is prepared if you can't put it in when cooking.
But for many culinary herbs & spices, it's important to have them first "toasted" in the skillet before adding food to cook. Chefs / websites for Indian cuisine show how. Turmeric tastes so much better this way. -
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Keebler
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- JD's suggestion for "Planetary Herbals Brand called Stone Free."
Didn't want to have that overlooked. That is an excellent brand. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Awesome!! awesome! Excited to try these two herbs out!!
"Turmeric does not really work as a tea and to mix the powder in water tastes horrid. I can barely slosh that down and not barf it back up. And it can irritate the mouth & lips, also a choking risk as it's hard to mix in water and not get powder stuck in throat as drinking."
And yes that does sound Horrible. We will be grabbing spice. Keep you posted!
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Keebler
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- Be sure of the source of turmeric. Some can contain lead when grown in certain locales. Be sure of the brand and their quality. -
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Keebler
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- As for "Stone Free" I have studied this at length and have a ton of links / excepts but they are not collected into a handy links set. For now, here's a start:
by Melody Elaine Thomas -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- JD:
First, delighted that your sister's MD suggested acupuncture as a comfort tool. Hope that works out.
I can get carried away with enthusiasm for herbs. Just want to be very clear that while your sister is in hospital, certain supplements must be considered very carefully and
everything must be in consult with her doctor. There are things at work here that we can't know. And since many herbs have various properties, they can undermine and even interfere with some pharmaceuticals.
A meal with turmeric may work out nicely as many herbs are food. But when we get to the therapeutic dose of something, that's a different matter.
Usually, though, a light tea is not anywhere near a high as a therapeutic dose and can still be soothing to the patient. Yet, depending on what it is, even an herbal tea could interfere in some ways.
Also be mindful that most doctors may not be aware or comfortable or ABLE to include certain supplements. Some maybe; most probably not. In all fairness, it's not been any focus of their training and they have strict rules they must follow, too.
If herbs are to be explored in the next steps . . . I would hope that she could get a LL ND, for guidance.
What I know some hospitals can and have done: Magnesium; Glutathione; NAC. -
[ 08-26-2016, 05:00 PM: Message edited by: Keebler ]
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So this is what Ive come down to so far with diet before and during the PICC line Treatment and since she is in a hospital setting:
3 hard boiled eggs every morning along with the best cottage cheese available.
Yogurt and Keifer (organic/grass-fed/live cultures) throughout the day and as much as possible.
Sauerkraut with the available meats at the hospital along with leafy greens and fruits + Water.
3 herbal teas in a day (We will ask Dr.) with ColostrumPRO brand supplement and raw honey as the only source of sweetener right now.
Supplements will include and are to be given FAR AWAY from the IV Treatments so no interference:
Food grade Turmeric Activated charcoal or "sacred clay" Milk thistle Japanese Knot-weed Stone Free Gall bladder support capsules Colloidal silver home brewed (been making for years) 1 Cup in AM and PM. Probiotics.
Due to the delay of the hospital now PICC is scheduled for Monday which we hope gives us time to boost her up immune up fast to be more better prepared.
Question: Shes always kind of spoke slow or slurred- LLMD attributes this to "Mini Strokes" along with the bells palsy that has happened in the past.
Her voice has become kind of slower I noticed and not as strong, almost weak and it worries me. Any thoughts?
She seems mentally at a state where she can remember most recent events and response is good except when she crashes to sleep which is about the majority of the time now.
Almost the whole day she sleeps but I guess its reverse in the wee am hours.
At home prior to bringing her to ER she was awake a lot of the day. Definite changes with IV Rocephin @ 1 Gram but it scares me. The ID doctor is very positive however.
I am on board with you Keebler as far as herbs. We have done alot in the past and fell off the bandwagon. We can vouch for it and the parasite cleanses work amazing. I will google the best available Turmeric in my local stores and thanks for the heads up.
Posts: 80 | From NY | Registered: Feb 2014
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Also .. please ask them to try IV magnesium for her spasms and cramping.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Keebler
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- Questions you have:
1. "Shes always kind of spoke slow or slurred- LLMD attributes this to "Mini Strokes" along with the bells palsy that has happened in the past."
NOT necessarily mini-strokes but could be. More likely, this is absolutely TYPICAL for lyme / TBD really and especially when tired or sensory overloaded. It should get better. Nothing to worry about. Happened / happens to me a lot.
The liver / the body has so much to do it can't be burdened with having to communicate. Rest is best. Low light, quiet is best. Some of this is also due to the adrenal overload and just how hard it is to may neuro connections right now. Speech takes SO VERY MUCH ENERGY. And that energy must go to other functions now.
2. "Her voice has become kind of slower I noticed and not as strong, almost weak and it worries me. Any thoughts?"
ABSOLUTELY normal for lyme / TBD. And there is nothing to worry about as, with treatment, rest, time and nutrition, this should improve.
Also typical for those with inner / middle ear or vertigo issues.
3. "She seems mentally at a state where she can remember most recent events and response is good except when she crashes to sleep which is about the majority of the time now.
Almost the whole day she sleeps but I guess its reverse in the wee am hours. . . ."
ABSOLUTELY typical for lyme / TBD. Adrenal support by days helps and not too much neuro stimulation in evening. She is likely so over tired that her body is just too stimulated to rest properly.
And the hospital is the worst place for proper rest. I hope she can get home soon. Still, even there, the day / night sleep thing will be hard for a few months at the least. -
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Keebler
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- I can't really say about the supplements.
About the silver, though, what is your water source? That matters greatly.
And "1 Cup in AM and PM."
is FAR, FAR too much. One teaspoon is the best starting dose, maybe even half that.
Too much silver can cause a dangerous, dangerous herxheimer. Some starts with just a few drops.
But I'm also not at all sure about combining it with IV rocephin. It could be too much for her body to handle. I would wait on the silver until she is off antibiotics altogether. Or maybe a few drops for MOUTH help to offset candida.
I had to start with just drops and silver really laid me low - helped but still a huge clobber at first. Her body could falter with too much thrown at it.
I strongly feel the doctor should okay all on your list as long as she is in the hospital.
Stone Free Gall bladder support capsules can lower blood pressure. As you said she has low blood pressure, that is something to keep in check. Yet, it may also help relax body and not be in as much pain. But I'm not a doctor and don't know about all she is taking as to if it's all in balance.
Still, the doctor has the right to know all that is being supplemented as she is his responsibility right now and if here are interactions, that falls back to him.
IV MAGNESIUM (and maybe glutathione) would cover all the bases, really, for time she is in hospital.
STEVIA is okay as a sweetener. Raw honey may be too sweet for candida overgrowth while on antibiotics.
Eggs can be prepared a variety of ways. Hard boiled are the least tasty way but a little gluten free mustard and stevia, with a good olive oil can be a sort of deviled egg mash sort of thing. A vegetable is really important with breakfast, too.
I'm not well versed in charcoal but BAMBOO charcoal is best - and timing of this matters. It can bind the bowels, if I recall correctly, and it may take Rx out of body too soon, too.
It nice that you devote so much time and effort to devising a support plan for her and I'm also stuck a bit here because it is so important yet best when guided by a LL ND when at all possible.
If you find an acupuncturist soon for pain relief, they would also know all about herbal supports IF they are actually a licensed acupuncturist and not just an MD who took a weekend course. Some of those are also very interested and have learned some other ways to support just be aware that training varies. -
[ 08-27-2016, 02:48 AM: Message edited by: Keebler ]
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Keebler
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- "Due to the delay of the hospital now PICC is scheduled for Monday which we hope gives us time to boost her up immune up fast to be more better prepared. "
To "boost" immune support can boomerang. Don't try to boost or go fast. Just keep it even and steady. It is good to be mindful of all that before Monday, of course.
Ideally, it's best to start ONLY ONE THING AT A TIME, and at a VERY LOW DOSE.
The PICC line should be IMAGE guided. Be sure of that. I forget what equipment they use but they should be able to see the whole time where it's going.
Google: PICC line, image guided placement -
[ 08-27-2016, 02:49 AM: Message edited by: Keebler ]
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Keebler
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- From my file notes:
sixgoofykids posted 02 September, 2015
chelating heavy metals right now (again) and have started taking Takesumi for detoxification/binding.
It's amazing at binding the toxins. I felt better within a couple days. If you're having trouble detoxing, maybe finding a good binder would help.
. . . Because of the porous nature of the bamboo, it is an amazing absorber (up to 10x more so than wood treated similarly, according to many sources).
Research from Japan claims it emits far infrared rays (thus improving circulation) as well as negative ions and shields the body from EMF’s. It also is a natural source of minerals (macro and trace) and is reported to be alkalizing. . . .
. . . We are making it available in powder form. Takesumi cannot be encapsulated without adding flowing agents etc. due to its light density etc. It is tasteless and dissolves adequately in water so it is not difficult to take . . .
. . . While there is not much human medical research on the uses of Takesumi, there are studies showing how absorptive it is, and how it can bind up heavy metals.
Studies have shown it to be effective in binding mercury, lead, cadmium, and other heavy metals (1, 2, 3, 4). It has also shown to be effective at binding aflatoxins (5). . . .
. . . Contraindications:
The only possible contra-indication we know of is not to take it if you have been diagnosed with variegate porphyria.
UHHHH ! Why? [I never answered my own question]
Takesumi Supreme Order by Phone: 1-800-922-1744 E-Mail: [email protected]
Takesumi Supreme Product Support Send all usage related questions to [email protected]
Takesumi Supreme™ is packaged in a 60 gram container which contains approximately 120 servings of pure specially carbonized bamboo. A 1/4 teaspoon scoop is included. -
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Well all to update anyone following this thread.
Last night when I returned home to rest they had put the PICC line in. I wasn't aware until I came back to the hospital this AM. They did it late at night. I will cease all supplements for now and focus on nutrition at this point to build up her body.
I do want to let EVERYONE who reads this to know the condition she is in that she is starting from.
She is TOTALLY bedridden. No function or motor skills in the hands. The only control she has of her body right now is her head so she can turn to the sides to look at us and eat as well. She can grab but we would need to bring whatever object it is to her to help her grab. She does not use the toilet, she wears diapers. Her eyes are crooked. Her left eye pulls to the left while her other is straight. Her eyes also shake almost all of the time.
She has muscle waste- There is NO muscle on her thighs. She is 5'6 and probably weights about 110lbs. She has other infections along with the LYME/BART/BABS which include Klebsiella and Enterobacter I believe as well as Candida which is apparent by her thick saliva. If anyone might be near death I believe it to be her.
I am keeping this open for anyone in this situation or better to keep positive and to follow us along with the treatment of PICC Rocephin. This is the first time she has ever received it. Prior Meds include FLAGYL DOXY MEPHRON and 1 other I forgot at the moment which NONE worked except Mephron during babesia attacks.
Fingers crossed the Rocephin really is the key to the treatment. I will keep you posted further with updates of Improvements.
So far, lots of sleeping is going on. No hunger. Nightly spasms but the arthritis part of the Lyme for the first time in YEARS her legs are straightening flat out onto the bed. She was twisted prior.
The state of New York is hard to get treatment in and if anyone suffers this battle to get treatment in NY for yourself or loved one you can PM me and I will help you as much as I can to try to get things started.
Posts: 80 | From NY | Registered: Feb 2014
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Thank you for the info on BAMBOO Keebler. It totally makes sense. I will be looking into adding this to my nutrition cupboard. I will work on ordering her a MAGNESIUM Bag through the Doctor because I believe she needs it.
Also thank you for easing my mind with the condition she is in. It really scared me when treatment started it looked/looks like she is/was getting weaker to the point of breathlessness. What a scary disease! Those ticks! and now the mosquito's!
PLEASE EVERYONE PROTECT YOURSELF And lets all fight the Good fight. It is a right to receive treatment FIGHT AS HARD AS YOU CAN because in the end these "doctors" are getting paid excellent money at your expense to do nothing and recite prior doctors diagnosis.
MAKE THEM WORK FOR THAT $$$ FROM YOU! and if you feel like they are ignoring you or belittling you and your thoughts you have EVERY right to file a MEDICAL CONDUCT to your department of health.
They WILL INVESTIGATE. Prior to submitting such paper...Do let your doctor know you plan on filling one out so that he can rethink his decisions and take a cellphone or recorder with you for evidence during visits.
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Keebler
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- Ask the doctor to run a RBC magnesium test to determine her need. Be sure to see detail in the magnesium links set.
Being an informed person in all matters of health is important. However, when a loved one is in hospital it can be a fine line between being a advocate and a pain in the neck to doctors / staff.
It is important to keep in mind the system in place and how to have that work as best it can. Rather than approach it as a fight, consider their parameters, too. Often, finding common ground is key. -
[ 08-27-2016, 04:01 PM: Message edited by: Keebler ]
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Ok will ask Monday when all Docs come back from weekend. I went to visit tonight. 1 new symptom has emerged with this PICC Line.
She was sweating up a storm. I couldn't believe it. I touched her to feel for fever but none. Is this a co infection or is this the liver suffering? Thanks
Posts: 80 | From NY | Registered: Feb 2014
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Carol in PA
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JD112, I am sorry that your sister is so ill.
The "burning" pain in arms and legs may be neuropathy. B-complex vitamins helped my neuropathy, as did B12 sublingual.
Garden of Life is my favorite brand of B complex vitamins, as I don't get a stomach ache with that one.
From what I understand, a blood test for magnesium shows the amount of magnesium in the blood cells, not the muscle and nerves. The Lyme bacteria live in the muscle and nerve cells, using up the magnesium there and causing twitching and spasms.
It was my understanding that the "right" test for magnesium involved an inner cheek swab, however there may be new info in the last couple years.
Intravenous magnesium is commonly given to women who develop a condition called pre-eclampsia before they are about to give birth. So if your doctor is wondering about doing this, he could consult with an Obstetrical doctor.
Magnesium would be a good support for the liver, which needs it to make glutathione to detoxify the poisons left by dead Lyme bacteria. NAC, n-acetyl cysteine, is excellent liver support, and is also used in cases of acetaminophen overdose.
If your sister starts all these supplements at once, there may be a problem. I know that when I tried turmeric, I got loose stools. Milk thistle also gave me loose stools. Later, when I tried charcoal, one dose "stopped me up" for 3 days. Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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Catgirl
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I haven't read all the posts above but vitamins and minerals are an issue for lyme patients. Lyme sucks them out of people.
I just saw Carol's post, B vitamins are depleted with lyme patients. Also vitamin D big time. Get her on some D. Also selenium and zinc are so important. A good mineral supplement would help. If she has a lyme doc she might already be on these though.
I think your sister would benefit from some reiki too. Some nurses are trained to give it in hospitals. Reiki and acupuncture are both wonderfully supportive.
-------------------- --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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Thank you for the link Catgirl. I ordered the Magnesium. I never knew such a thing existed. This is pretty cool and cant wait to try it on her.
My mom asked me if she should give her Vitamin D but I was unsure to give her an answer. I will now tell her to go ahead. At what MG do you recommend?
Will look into those other Vitamins. I have so many pill bottles I wish there was an easy magic pill.
Will this lotion replenish the magnesium that you are talking about Carol in PA?
The "burning" pain in arms and legs may be neuropathy. B-complex vitamins helped my neuropathy, as did B12 sublingual.
Does the neuropathy go away in time and if so is it one of the last things to leave? Thank you for your advice and concern.
UPDATE:
She said she feels in pain all over now. Her pain is usually confined to the legs and arm and knees but seems to have spread. She said it feels "sharp"?? She was in a lot of pain last night. I am awaiting a phone call from our mom to get an update on her condition.
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Catgirl
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You're welcome! Yeah, that lotion works fast for me. I take 25k of vitamin D, but some people take 5 or 10k per day.
There is another product you might want to check out. It has lots of good stuff in it (Nerve Shield). Another poster: Bugg raved about it. Check out her thread:
-------------------- --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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bluelyme
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Prayers for you and your sister ..you can get a doc to order more rocephin and change dressing on picc line buy it will be all out of pocket ...home health care will not be cheap...dave martz stopped his muscle wasting with 4g of rocephin..i am trying 2 grams with other modalities .....ask if id doc will order a port put in for ivig or abx ...it can go longer in between flushes ..you are a amazing sister ...
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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Carol in PA
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quote:Originally posted by JD112: Will this lotion replenish the magnesium that you are talking about Carol in PA?
Does the neuropathy go away in time and if so is it one of the last things to leave? Thank you for your advice and concern.
Magnesium oil/lotion should help, but it may take some time.
If she cannot take magnesium in pill form, perhaps she could take this:
Regarding Vitamin D, your sister is very likely to be low, unless she gets out in the sun regularly. You need a good level of D so that the magnesium can be metabolized. I'm taking 5000 units daily.
Peripheral neuropathy is nerve damage, and it's not going to heal unless you can supply the things the body is missing. The Redd Remedies Nerve Shield mentioned earlier looks like it has the ingredients needed for nerve repair, all in one pill. I've taken most of the ingredients separately.
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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Hello all, thank you again for all the information provided. I read all links and investigate.
Today again the hospital is ready to kick her out with discharge papers. Offering her LOW quality nursing home facilities for placement and "rehab". We wanted to get rehab for her extreme STIFFNESS because she wont bed the legs and is pain.
We are also scared to leave the hospital because we feel we wont be able to get a hold of the ID doctor since she does not have an office and floats around the hospital. She has a PICC line now and we don't know what to do.
Posts: 80 | From NY | Registered: Feb 2014
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posted
We are desperate and calling Rehabs centers of quality care that state MS therapy just to go around the system but they will not grant her acceptance even with the Hospital discharger.
Her ID doctor recommended prior to picc we should go Upstate N.Y. but I don't understand if she is hinting to me to get her out of the hospital she is in now and send her upstate for further treatment. Im not sure if the message is supposed to be subliminal to get further treatment.
Posts: 80 | From NY | Registered: Feb 2014
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bluelyme
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Is there any integrative docs there? Can you afford private hospice ..or a private nurse .? You can order intermuscular shots yourself if they insist on pulling the picc...she needs a lot of treatment to have a quality of life ...praying for you
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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Catgirl
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She really needs a good lyme doc. I think that is what the ID doc was hinting about. Hospitals and nursing home hands are tied. NY medical board is why. If you need a good lyme doc post in "Seeking a Dr".
-------------------- --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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Hi. We are going to ask here shortly. How much does private hospice and private nurse run for to get an idea. I found Infectious disease doctors upstate that say they treat Lyme but her Lyme IGENX according to the hospital is negative. I posted in seeking a dr. but no response as of yet. :-(
They just want to push her out to nursing home and we want to try all these "new therapies" out there that no one will arrange.
They just keep telling us shes at a point of no return and that to pretty much give up and send her to a nursing home with Skilled therapy. Why do all these other therapies exist for if they cannot be used by people who need them?
Posts: 80 | From NY | Registered: Feb 2014
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You should also contact the Lyme Disease United Coalition at (800) 311-7518. They are very knowledgeable and might know of someone. Their website is: www.lduc.orgPosts: 9020 | From Illinois | Registered: May 2006
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Stay away from Infectious Disease Doctors (IDSA). They believe one dose of antibiotics is enough and don't believe in chronic Lyme. Here is a link for you to read about "Two Standards of Care":
Your dear sister needs to be evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease or its complex treatment!
Posts: 9020 | From Illinois | Registered: May 2006
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Catgirl
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Private home health care is about 15k a month. Not sure about private hospice.
-------------------- --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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susank
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posted
Have you posted somewhere here her Igenex results? If not - could you? IGG and IGM bands; "-" "+" and "IND"?
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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OOPS! Posted into the wrong section. C+C+P. Will update again shortly with new info.
Original Doc on vacation. How convenient.
Update:
Waited for Doctor to come in today after having nurse station call in and she didn't return.
They are pushing us out the door with the excuse of "offering us rehab with a skilled nursing facility" and that we did not accept the offer so they can no longer help us, which I think is bologna .
How can they deny you treatment of choice and offer you something totally different. We are going to compile a list of medical devices that we might need to continue care at home.
But in the end, we still are going to need help long term. Private nurses at those prices will be impossible to afford. We will starve ourself out of food and monthly household bills.
Its to impossible to be an option. I did call her old LLMD and asked hinting if they might continue treatment if she gets better and the office said we will see.
So hopefully. I also contacted the Yahoo Group Lyme Disease to which I got leads but very expensive as well.
I was watching a YouTube Video online about a product called Moringa that I am going to research some more.
I hope it proves to be helpful.So far this looks good.
Moringa leaves are loaded with vitamins, minerals, essential amino acids, and more. One hundred grams of dry moringa leaf contains:4
9 times the protein of yogurt 10 times the vitamin A of carrots 15 times the potassium of bananas 17 times the calcium of milk 12 times the vitamin C of oranges 25 times the iron of spinach
I called Coalition as well as the numbers on the lymenet support group by area. I will provide IGENX info tomorrow because my mother tried to
send them via text and they are of terrible quality to even decipher and she is asleep hopefully as we speak.
Pains are still persistent in the legs. She says it is the bone in her legs that hurt. As if it is the entire bone and not just the joint. Shards of glass is what she compares to it.
Anybody here live down south? Is Lyme tolerated any different anywhere else? They say MS is supposed to effect people differently in different climates. I wonder if it is true to Lyme?
Shes not on any drugs but she seems very much out of it continuing with the sleep and nightly pains. I appreciate all the positive words and encouragement. God Bless each and every one of you. Will keep you posted.
Posts: 80 | From NY | Registered: Feb 2014
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Yes, 24 hour care.
-------------------- --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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Sorry all. I forgot my password and had to reset.
My biggest concern right now is that prior to bringing her to the hospital her arms stiffed up like a board and am noticing no relief.
We are afraid to bend her because we are not sure where her elbow is?! She is sleeping alot. All day almost and skipping meals until dinner. BP low in my opinion.
She said last night her calves were hurting and it woke her from her sleep she jolted and quickly we put her leg massager on and repositioned her leg in fear of blood clots.
She said she got relief and it was weird. We still don't know what that was. She is still tight and just sleeps alot.
Is all this she is going through sound normal for the disease therapy? Her bowels are sluggish as well and taking something for that.
Tomorrow I prepare to disagree with the doctor. Wish us luck. We won't go without a fight.
Posts: 80 | From NY | Registered: Feb 2014
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posted
In hospital. We submitted another Qio appeal. They are enraged with us. Waiting for doctor to come in. So far an hour waiting.
Posts: 80 | From NY | Registered: Feb 2014
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- See if you can find a patient advocacy office at the hospital. Most have them. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Update :fired doctor and called a facility to find a doctor on board of therapies. Pray for us that she is sent to a facility for the extreme tightness and spasticity.
Posts: 80 | From NY | Registered: Feb 2014
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I am praying!
Posts: 9931 | From Maryland | Registered: Dec 2007
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I am home now. I will have to go back tomorrow because officially she cannot be fired until I have a replacement.
I was having a hard time finding someone quick and some drs denied and I'm limited with what I can choose due to "hospital rights" regardless that our insurance will pay.
What a big game. We did another appeal and some reports to patient relations towards the pt team because they were not doing their job ordered in the script.
No pt at all. Let's hope qio agrees with us and feels she is not ready to be released.
If that's the case and I'm not mistaken on my part I have some names to report to medical conduct.
Their main job is to push people out the door heavily sedated.
I am trying to get a lawyer. We will see who will listen and isn't paid off by the big bad hospital.
Her condition:
Was awake with me most of the morning which I believe is because we requested not to give her flexerel in the day anymore.
Voice is weak still. Out of breath-ish. BP Low. 96/64 and about 86 bpm.
Yesterday for the first time ever and not happened again it was 112/64. But since has not happened again. It was random.
She gets these random out of no where pains and cries and says help me! I ask , what is it?! She says Pain in my leg!!!!
I say is it grabbing? And she states yes and that it feels like shards of glass.
I'm not sure if it's yet to early to tell improvement, her thought process to me seems a bit more fast but nothing dramatic
and isn't much to grab onto yet as her body is still twisted and locked together in the elbow and knees.
When I say locked I mean you CANNOT BEND. There is no way. She will scream in pain if we try to relax her body. We can't even try her body just won't maneuver.
I don't know what this is or what's going on but I hope it goes. Remember this is the reason we brought her in. We are scared.
She is stuck 24/7 in this position. Any thoughts on why this could be? And is there any coming back from this?
I tell her I talk to other Lyme sufferers online and your responses and it comforts her.Thank you for your prayers.
Posts: 80 | From NY | Registered: Feb 2014
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Did they ever give her any magnesium? Not saying it's a cure all, but without it and with them giving her so many meds, the mag gets depleted.
End result is muscle spasms and pain.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
I would rub that lotion on her calves.
-------------------- --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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Yes. I did ask today and they said Dr would have to order. So no mag as of yet except nature's calm. Going to get mag tabs either way. This hospital is garbage. Lotion will do.
Was not able to speak to her at time.
I have a question upon research. This looks like something she's gone through.
It is called CMT. Chariot Marie tooth disease. Have you ever heard of it and is it part of Lyme.
Her feet did this a few months ago and now it's the arms. She drove her nails into her palms and her fingers looked broken. We have to pry them open.
It is scary. Now same issue but in elbows and knees as well.
Posts: 80 | From NY | Registered: Feb 2014
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posted
I'll look it up... in the meantime, get that mag lotion going!
PS... Not having mag "on hand" sounds like bunk to me. They use it when people are having heart attacks or other heart issues. Every hospital should have it on hand.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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