posted
My teen daughter was dx'd with congenital lyme last Dec. Also Babs & Bart
We started with the standard oral meds (Zith, Mepron, etc.) + Bicillin shots. Her stomach was completely shot and her weight got dangerously low.
By April she was in a wheelchair full time.
LLMD had us install a Groshang line for IV rocephine and a G tube for nutrtion in June. Since June she has been on Rocephin, Rifampin,Zith, Enula, and more recently, Minocin.
Her health has continued to decline. She is bedridden, in constant severe pain all over, cannot bear to be stroked.
Every evening she breaks down emotionally and wishes she were dead.
A week ago the LLMD had us break the rocephine, Rifampin and Enula. She still got worse. Last Friday we stopped all abx. Still getting worse every day. Can't be left alone, on lots of pain meds and depression/anxiety meds.
I have never seen anyone this sick. I am trying to be calm.
We have an appointment with Dr. H on Saturday. I know he is good.
I feel like I am watching her die. Please send her healing thoughts and prayers.
I don't know what else to do.
Marla
-------------------- "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Anonymous Posts: 450 | From California | Registered: Feb 2008
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-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Dear Marla,
I am so very sorry to hear how sick your daughter is.
I know that one of the sickest lyme patients I had heard of in California is a woman named Sarah (you can search Lymenet under California Lyme, her net-name). It took nine months on IV rocephin for her to respond; she was bedridden like your daughter.
There is also another family in California, a man whose net name is Lyme Dad, whose sick daughter became very ill as a teenager and has made some recovery through aggressive treatment.
I hope you will have a good meeting with Dr. H, and I will keep you both in my thoughts that she gets the proper treatment and responds soon.
Posts: 2557 | From home | Registered: Aug 2006
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Sorry
Lyme hurts by itself then when you kill it it hurts worse.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
clairenotes
Frequent Contributor (1K+ posts)
Member # 10392
posted
Is it at all possible that your daughter may have some allergies or sensitivities to her abx regimen?
Enula is fairly strong... my husband took it without using proper detox and got ill.
Were there any detox methods in place? If not, could you ask your llmd about this? Now could be a good time while off abx. Foot detox baths come to mind, as just one example. Or perhaps some type of detoxing IV?
This is not medical advice, just thoughts based on personal experience and research.
Claire
Posts: 1111 | From Colorado | Registered: Oct 2006
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thoughts and prayers are with you and your daughter.
Posts: 561 | From mass | Registered: Jul 2007
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
So sorry Marla,
I also go to Dr. H, was just diagnosed after being sick for 12 years, I too was sick as a teen, it was horrible. Dr. H is very caring and compassionate. While he didn't know what was wrong with me for sure before the test results, he promised he would get me feeling better.
You will be in good hands. I will pray for your daughter.
posted
Your daughter started with at least 3 strong meds and then went on to 5. I also have had a very sick daughter w/Lyme, but some of her most serious problems ended up being from meds - and she was only on one, which was started very slowly. She was in a crisis just like this 4 years ago, and is now in college doing fine.
With a scenario like this, you might want to avoid mainstream doctors for awhile. Some of them are using situations like your daughter's to call child protective services. While some doctors are under attack, parents are sometimes also, as another avenue in the Lyme wars. Protect yourself.
I would get your daughter to an alternative doctor or someone who does "functional medicine, which could also mean an alternative allergist, or a nutritionist/chiropractor. GI effects like this can definitely be from allergy or from leaky gut (from abx). Dr. H. can do some of this, but blaming all of this on Lyme could very well be dangerous- it could be from the aggressive treatment!
The doctor who helped our daughter diagnosed food and med allergies (she did an elimination diet), treated for yeast, gave probiotics, and treated gastritis/inflammation with Gastrocrom, a clear liquid that comes in vials, a mainstream Rx. She did have an endoscopy first, which showed yeast and gastritis, but that is not even necessary.
With symptoms like this, I would personally not trust the prescribing doctor who continued treatment. I think this treatment has been irresponsible. There are worse things than Lyme, and you are experiencing them.
What is in the G tube? Sorry, I am not knowledgeable about this.All I can say is that my daughter was soothing her GI tract and keeping calories up with ice cream and Ensure-type drinks. It turned out that she was allergice to milk and other ingredients!
I would get her off all meds except the ones I mentioned. This may involve some withdrawal, because a lot of those abx are anti-inflammatory. Give it a couple of weeks.
In fact, it can take as long to heal the gut as it took to get to this point: so be patient.
She should NOT take Zantac or Prilosec or Protonix etc.
What were your daughter's original Lyme sypmtoms? Did they involve GI? Has she ever had allergies, asthma, skin problems?
Oh yikes- what meds is she on for anxiety/depression. We dealt with this also. Get her off those meds! If she is on an SSRI, they can cause all of these problems. Also, be aware that you need to taper them VERY generally to get off, I mean VERY, like over weeks or even months.
Our daughter is using hypnosis and a micro dose of Lexapro at this point and even now, when relatively healthy, the Lexapro has made her thinner. Zoloft gave her diahhrea, wt. lost, unable to eat, food passed fully formed etc. This was simultaneous with the leaky gut, allergies, yeast, and gastritis so it may be that the SSRI side effects were so bad because of an interaction w/the side effects from abx.
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Restore her system that has been destroyed by toxic meds she cannot handle. Functional medicine, yes. Lots of good nutrition--fresh juices made in an Omega Juicer, hyperbaric oxygen treatments, even a mild chamber will be fine to help restore her cells, IV glutathione and IV vitamins/minerals. Forget about the drugs for now until you get her back to a more functional state. Then consider more gentle treatments. Some people need very low dose abx and maybe low dose IVIG or even low dose steroids (Artist Di used those when she was near death, and was on extremely low doses of IV doxy, like 20 mg).
Posts: 2276 | From united states | Registered: Jun 2004
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Hi Marla,
I'm sorry to hear of your daughter's condition.
I know school is your last concern right now, but how is the school taking your daughter's absences?
It sounds like she will need an IEP with classification of Other Health Impaired (OHI) to keep your family out of truancy court. You must protect your family.
Special education covers the needs of several categories of students....such as students whose medical conditions require specific accommodations and talented and gifted students.
You may need to hire a special education attorney to get what your daughter needs. Some school districts are great and do what they need to AND are required by federal law to provide, but others have to be forced every step of the way.
If you haven't done so, send a short simple letter to the school principal requesting a complete educational evaluation. Keep a copy of the dated letter for your daughter's records. The school will have 10 days to respond to your letter. They will schedule an initial evaluation meeting. If she's deemed eligible for an evaluation, the school will have 60 days to complete the evaluation.
Assuming the committee finds her eligible for special education, they will have a month to develop an IEP...an individual education plan. Your input is of utmost importance in this plan.
You will most likely need an advocate to help you navigate this maze. Special education law and school district politics are as divided and complicated as dealing with Lyme disease.
Your daughter will need an IEP to legally protect her education. A Section 504 plan, including the provision for homebound education, will be insufficient to address your daughter's educational needs, although it could work, a Section 504 plan is not as legally binding or easily enforceable as an IEP.
Some families choose to homeschool their children with Lyme disease. It's a hassle to deal with all this school stuff when you have a sick child.
You'll need a letter from your physician to verify the severity of your daughter's condition. Do not give the school access to her medical records. HIPPA law protects her privacy.
The school may ask for or demand many things they don't have a legal right to obtain. Check with an education attorney to see what they should be given before you agree to anything or sign any document.
The school will count on your ignorance of the law and may try to intimidate you with their demands or threats.
Wrightslaw is a great website to learn how to navigate the Special Education system.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
it pains me to read your daughters plight.
i too was this sick at one point. i am now 25.
i have been in treatment for almost 2 yrs now and am just recently back to 50% functionality.
some things to consider and make sure dr H covers:
metal toxicity (be sure to get a PROVOKED metal test to access her level of metals. high mercury and other metal poisoning will keep her ill)
adrenal testing- she will not get well if her adrenals are not in line
tsh- make sure her thyroid is functioning properly, this too can inhibit healing
DETOX DETOX DETOX- #1 most important part of ANY successful lyme campaign. some suggestions:
IV glutathione. she already has a picc line, get some 2g pushes and do 3x week. infuserveamerican has them 12$ a push. cheapest anywhere
chlorella is a great binder she could use at bedtime. vitacost.com use sun or go to biopure.us and use their brand
lymph drain herbs from Nutramedix such as parsley, pinella, and burbur. very good adjunctive therapies for detox.
water water water. drink 64-128 fl oz of quality filtered water
i do think it is possible the amnount of meds she is on may be overkill. if she is not detoxing enough the die off alone will throw her body into array.
n acetly cycteine (nac) is a glutathione precursor just as glutamine is. use both daily.
lemon water also.
saunas and sweating is she can handle it although when i was in the state she is in i could not handle that.
something else to consider, the pain and physc meds may just be complicating things.
especially the physc meds. they only have a 30% success rate in healthy people much less lyme patients who have a unique bodily make up to say the least.
with lyme it is a never ending journey exploring possible treatments and meds, these are just are few thoughts that came to mind.
if i can be of further help, call me 484-467-0410
i would love to help more if i can
tell your daughter to hang in there and she will be ok. i am going to be ok. i was there, i am now here. she will get here.
she is in my thoughts and prayers as are you.
do not give up
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
I know that detox is the key. Maybe we haven't been doing enough.
She has been on Zeolite, Burbur, Noni, a mixture of Greens with chorella & spirulina.
She won't drink water, but I pump it thru her feed tube directly into her stomach all day at a slow rate. I add lemon or burbur to it.
She gets lots of probiotics, but still has severe diarrhea (no C diff).
I definitely would like to do IV glutithione pushes. I will find out about that.
She is on Zoloft, Valium, Seroquel and Lyrica. I am reluctant to remove any because they all helped as they were added in. We have consulted with a LLMD psychiatrist in WA who suggested this combo.
For pain, we are mainly using medical marijuana, which is legal in CA and she has a doc. note for. She uses a vaporizer, so the smoke doesn't harm her lungs. The pain has been much easier to handle with that.
The school is classifying her as "orthopedically impaired" and "other health impaired", so I think we have that covered.
We had her hair tested for metal toxicity and it came back fine, but maybe we need to do more.
I have to continue to work with Dr. H right now. I trust him. He is treating my lyme as well and I don't have the stamina to start going down other paths unless he says he can't help. We are also working with a LLND.
From the responses so far, I'm thinking, much more detox and not so much abx. for now.
Any other thoughts? Thanks so much. Marla
-------------------- "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Anonymous Posts: 450 | From California | Registered: Feb 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
My LLMD believes strongly in low dose medications. He has very good responses from his patients with low dosages over larger ones. I have heard of several people having more trouble with too many meds than with the Lyme itself.
Sorry your daughter is having to go through this and that as a mother you have to deal with watching her suffer. Just IMO, our bodies are capable of detoxing when on lower dose meds; but when we load our bodies with too much, that is when the trouble may start.
This is just my opinion; but I feel that the low dose treatment may indeed end up being the best choice of treatment for many of us.
I hope your daughter feels better soon!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
Marla,
I am so sorry you are having to deal with a sick daughter while being sick yourself.
Dr H is one of the best! I'm sure Saturday just can't get here fast enough for you.
I really can't add to the wonderful suggestions you've already gotten from others here.
I just wanted to offer my support and prayers for you and your daughter.
JoAnne
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
marla-
in response to your response...
sounds like you are already pretty well versed on detox which is good. the products she has been on are all good.
i am glad you are going to look into the glutathione it has proven to help me and others.
first thing that concerns me is the diareah. a humans immune system is 90% in the gut. if she has constant diareah and it cannot be resolved w probiotics, i would back off the oral meds causing the diareah. one cannot heal or absorb meds correctly with non stop diareah. perhaps back off some meds, double the probiotic intake, and see if if will settle. that needs to resolve first.
the physc combo sounds ok, zoloft for depression, seroquel for sleep, valium for anxiety, weed for pain. all those meds are fine BUT when used in combo can cause some serious interactions. they may not be listed and and im sure your physc dr will be the last person to admit it but sometimes when so many physc meds are taken together it can cause more harm than good. just my experience, as i was on trazadone, ambien, xanax, percoset, and valium and am feeling better off of them. often times the very reasons one is put on the meds for are being perpetuated BY the meds. kind of crazy.
the hair analysis for metals is very unreliable. the best way to test IMO is a provoked urine test w dmps or dmsa. ask dr h for a test from doctors data and make sure its provoked. you may see a totally different level on the provoked test. does she have amalgams? if she does, chances are she has high mercury...
i would continue with dr h also, he is a good guy and knows his stuff, just is a bit busy as all good llmds are because of the number of people they try to see. often times in this kind of a scenario some details are omitted and we are left to play detective as you are doing for your daughter.
i would maybe try to see how she does without some of the meds after her diareah is calmed down.
the weed is harmless IMO as i smoke sometimes too but the physc meds i duno. its your call. again the emotional ups and downs outbursts and hopelessness can be made WORSE by them ESPECIALLY in teens, not better.
some other detox ideas...
epsom salt baths...drag her into it
everything mentioned and what you are doing seems good. get her on some more supplements that focus on glutathioine production and liver support
is she being adjusted by a chiro? this helps me immensely also..
thinking thinking....
detox foot pads can help minimally although i am not a big fan.
ionic foot cleanses can be of aid also.
drinking tons of fluids is the best way to go w the glut push and the supps this all should help.
back off some meds, get her settled with the diareah, and re access.
hang in
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
sending you and your precious daughter my heartfelt prayers, thoughts, and
you're going to a great dr; may this be the beginning of getting her on the yellow brick road!
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Shosty
Unregistered
posted
I think you have a lot of great info from everyone. I am going to heed some of this advice, myself. Thanks everyone!
You might want to watch out with the glutathione. Using too much can make your daughter sick, too. Our daughter ended up doing small syringes full. She could not handle the IV. Or, start with the N acetyle-cysteine.
Detoxing itself could be risky right now, be careful.
I think you need to focus on healing the gut before much else goes down her GI tract. The do only one thing at at time, a week at a time. Someone mentioned ArtistDi, whom I remember from a few years ago. Our daughter, and, to some extent, I, ended up in a similar "crash."
We have healed and rebuilt very, very slowly and carefully. Micro doses of everything, one at a time, wait, then proceed to the next thing.
504's work fine, in our experience, are simpler (when you are already stressed), involve less contact w/school and with fewer people (less chance for trouble) and are more easily controlled (you can write it, have then sign it). But sounds like you are all set w/the school.
I can't emphasize enough how destructive those psych. meds can be for the stomach. Go online and read about SSRI's. Zoloft ended up being the cause of our daughter's daily diahhrea and malabsorption.
Also, those meds all interact, probably in unexpected ways (as someone said), and have particularly troublesome effects on teenagers. It will be complicated and take a while, but get her off! Have a hypnotist or someone come in if you need to, anything, but those meds, especially the SSRI's (most of serotonin metabolism is in the gut) could very well be greatly worsening the gut issues. This is commonly known and there is lots of stuff online.
A few tips on withdrawal. Getting off the zoloft and lyrica can make her feel fluish and have neuro stuff like feelings of "zaps" in her brain, and even hallucinations. The last 5=10 mg is the worst, so she can cut a little more aggressively in the beginning that the end.
You can start by taking off 1/8 of a dose, progressively, but toward the end it can be a sliver, or you can get liquid versions and use that. Also, she can take doses 2 hours later, then 2 hours later, and so on, so use time to decrease the amount in the system, as well as the dose decreases.
Things may improve even at 1/2 of her current dose, then keep going.
You can also use tiny doses of another drug to ease withdrawal. Some people use Prozac, because it has a long half life. Some use 5 HTP too, a more natural supplement that affects serotonin. But be careful, that could be too much.
Please understand that I am not insensitive to psych. issues. One of my kids was psychotic on tetracycline. Very. For 3 months. Two days after we took her off, she was back to being herself. Amazing. Lower level, longer term psych.issues w/Lyme have been in our house too.
But start from scratch. Get her off ALL MEDS and then bebuild one at a time. Less is more!!
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Shosty
Unregistered
posted
ps Is anyone but you managing all this and coordinating meds? Make sure someone legitimate is.
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posted
Both her LLMD & LLND work together to coordinate her meds.
The LLND had me get a nasal glutithione spray from a compounding pharmacy today. He is afraid a push will be too much for her to handle right now.
He also said to give her methylcobalimin B-12 twice a day.
I'll try to drag her into the epsom salt bath tonight.
I feel your support. Means more than I can say. Marla
-------------------- "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Anonymous Posts: 450 | From California | Registered: Feb 2008
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
the push does not in my experience result in any worsening of symptoms.
do what your dr says tho.
pleas let me know if i can be of further assistance.
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
I have no idea what dose of Rifampin your daughter is on, but hubby had to start with 75 mg and took about 4 or 5 months to get to full dose of 600 mg.
Then after one month at full dose he cut it to 450 mg and then 300 mg and today the LLMD said to stop. Pretty sure it is the main cause of hubby's encephalopathy which had been gone for over a year. He is on multiple meds, but has been in treatment for over 5 years so his germ load should have been lowered somewhat already.
The Rifampin seems to also be the med responsible for hubby's weight loss -- down over 30 lbs in last 9 months and he doesn't have any diarrhea or absorption problems.
In the beginning IV Rocephin by itself was almost too much for him. I had to stop almost every single IV 1 or 2 times to give him IV Ativan for seizure-like spells. And we were using daily Vitamin C IV's and daily IV glutatione pushes as well.
Many of the meds you listed do cross the blood brain barrier and combos of those meds can be problematic. Without adequate CoQ10, vitamin C, vitamin E and other antioxidants such as pycnogenol(pine bark extract) the brain has no way to fight free radicals. The good fats are also extremely important to fight inflammation and rebuild cells.
Phosphatidylcholine might also be a good supplement.
Here is a link to something I posted on another forum. It explains why sometimes going slow is the best option.
I think I discussed in that thread also the fact that SSRI's or natural supplements such as 5HTP or L-tryptophan can cause elevated quinolinic acid which is a neurotoxin. Please consider adding Resveratrol if you feel you can't stop the meds.
A deficiency in serotonin can be a cause of a higher than normal pain response. In my opinion using the natural supplements will work much better. The drugs only keep a dwindling supply of serotonin active, but do not replenish the supply of serotonin. Also need B6 or P-5-P (activated B6) to make serotonin.
If your daughter has not had a SPECT scan then I would defintely suggest one. Hypoperfusion and also hypercoagulation could both cause problems with bloodflow to the brain leading to headaches or brain inflammation -- the most likely cause of her being in a wheelchair unless that is simply due to weakness from weight loss.
I agree that the diarrhea needs to be one of your top priorities.
As a last resort Cortef may be indicated if her neuro problems are severe. See the current thread I have posted on this.
Best wishes.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Shosty
Unregistered
posted
You have mentioned Zithromax, Mepron, Bicillin shots, IV Rocephin, Rifampin, Enula, Minocin, Zoloft, Valium, Seroquel, and Lyrica. Look up the side effects and interactions for each of these, especially considering your daughter's age and condition.
Just taking Rifampin: affects the liver (can cause jaundice, liver failure), GI (nausea,vomiting, diahhrea), immune problems, rashes, fluishness, arthralgia (which means pain!)
Look each one up, and then picture, instead of a solo instrument, and orchestra with all these meds.
I cannot understand why these medications were continued, even added to, in the months that these problems have developed. I would find some new doctors who don't cause any more harm.
You need to step up as a mom and protect your daughter. Stop thinking that everything is Lyme and that the answer is MORE drugs! ///////////////////////////////////////////////////////////////////
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Marla,
My best wishes for your daughter and your visit with her to Dr. H this weekend.
It is so very important that you work with a lyme literate doctor like Dr. H at this time when your daughter is so sick.
While it is great to get support from other lyme patients and read about their experiences, and incredibly useful to hear about how other patients are treating their illness with their doctors, please be very careful and skeptical about taking medical advice about her treatment from us.
While our experiences can help inform your judgement, and raise questions to ask Dr. H about her treatment, we are not doctors and have not seen your daughter. We are not llmds ourselves, just other fellow sufferers! Many of whom might be greatly informed and educated about tick-borne diseases, which is why it is good to consider our experiences, but in conjunction with her doctor's guidance.
I would not make any medical decisions based on what I read on lyment, but use all the medical advice people are freely giving here for your daughter as considerations for discussion with her doctor.
Posts: 2557 | From home | Registered: Aug 2006
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posted
hi, Myself and my two kids who were very sick with lyme, (daughter bedridden junior year in high school) all went on long term abx for over 2 years..BUT we combined it with alternative medicine to continue to strengthen our immune system, like Reiki and weekly acupunture. We all got well, weined off abx, and continue with monthly visits for acupunture to strenthen and keep strong our immune system.
My daughter just graduated from college last spring and did great..my son is a sophomore in high school and running cross country, playing baseball etc..no issues remain.
strengthen your immune system with alternative means..I really believe that abx can do most of the work, but you need the extra to bump you into recovery. Dr. H and Dr. J in Ct. were our drs. and both were godsends.
Hope this helps and your daugher feels better soon..have you tried acupunture or Reiki? they both work remarkably well for Lyme if you find the right practitioner who is familiar with lyme disease.
best, lisa
Posts: 14 | From Rhode Island | Registered: Sep 2008
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clairenotes
Frequent Contributor (1K+ posts)
Member # 10392
posted
Have never considered noni to be a cleanser. From what I have read about it I always thought it was used for a particular strain of babesia.
It will be really good to hear what Dr. H has to say about the medications because one does get the feeling that a sort of overload is/was going on here on different levels.
Please keep us informed.
Claire
Posts: 1111 | From Colorado | Registered: Oct 2006
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
dont get the wrong idea that your daughter will do fine off all meds and that she doesnt need a lot of them, it may just be overkill right now.
youll find 3 kinds of people here on LN.
1- obsessed with RX drugs, not big fans of alternative means of healing
2- obsessed with alternative healing, not big fans of RX drugs
and #3
like a mix of both.
try not to let any of our opinions sway you too too much as one said above, we are all patients ourselves, we just know a thing or two.
please keep us updated on your daughters condition, she is in our prayers.
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
Thanks for all your suggestions. We have make it to another evening. Nights are the hardest, so wish me luck.
I think the nasal glutithione may be helping a little bit.
I trust our LLMD & LLND (Dr. H & Dr. T) and will not change anything without their review.
I know she has been on a lot of meds & herbs and that it may be too much for her body. But Dr. H has experienced the best results with aggressive treatment, so that is where we started. We will have a long discussion about what to do next.
Her rifampin dose was 300 mg. per day and she had emotional herxes for about 6 weeks. They stopped when we upped the Zoloft and added Lyrica at night.
We have been seeing a chiropractor, but are changing to a new one about 4 hours north of here who has helped two teens with lyme that I know get out of their wheelchair. Our first appt. is Monday.
We have also just started NAET, which I have heard is helpful to many.
I am feeling more confident that we will actually make it until our appt. with Dr. H on Saturday.
Some people have told me that their children have been bedridden. Any tips on how to deal with bathing, possible bedsores, atrophy, etc.? I'm thinking that we should see if insurance might cover a hospital bed.
By the way, her birthday is next week and we got her a Wii today, which has upped her spirits, at least for now.
I will keep you posted. Thanks again for the support and prayers.
Marla
-------------------- "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Anonymous Posts: 450 | From California | Registered: Feb 2008
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
i was bedridden for six months.
make sure she moves her legs and rolls over from side to side as much as she can.
rest on one side, then the other, then the belly, then the back, no more than 30 more per position unless sleeping.
use a plastic chair in the shower. makes showering easy.
a hospital bed isnt a bad idea. my 6 months in an uncomfortable bed was a long ride. being bedirdden your bed and bedroom becomes your only place to be obviously os its nice when people try to make it nice and as comfortable as possible.
when i was stuck in bed my fiance put pics of vacation spots from florida all over the walls so i had something positive to look at.
those times in my bed were truly dark days. i had forgotten until you mentioned. thank god i am no longer there. trust me, i KNOW her pain. it is unreal, and she is in my prayers.
tell here this:
what does not kill us, only serves to make us stronger.
glad to hear she is doing a bit better, anything to keep her spirits up is KEY. spirits is 50% healing IMO. keep stress far away, love and healing close.
prayers to you and your daughter
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
Whether meds or supplements or herbs: it seems wise to start one thing at a time,at a low dose, then work up to the dose that is tolerated and needed, watching for side effects. Then add another thing if needed, low dose, work up, watch for side effects.
With this situation, because side effects were not identified for individual meds, it is hard to tell what really needs to be discontinued, so there seems to be no choice but to stop all and then start over again carefully, if any of them are tolerated at all in the near future.
This kind of scenario is one reason that there is so much controversy over Lyme. This parent is also very vulnerable to charges of making her daughter sick, even if two doctors are involved. She needs to be very careful.
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posted
I'm new to most everything I've read here. I'm from PA but live in Richmond, VA -- where no one gets Lyme (they do only in the northern part of VA) so I've just waited around in sick pain for 4 yrs until the Lyme sort of went away. Now, it's back again - 7 yrs after first infection.
However. My psychiatrist put me on Neurontin (Gabapentin) for the neuro knee pains & spasms that I think kept me up at night. It saved my life. I could walk again. Just functioning in a more normal way helped me gain some hope...and that's what we ALL need, yes?
After it came back recently, I convinced my psych to give me Neurontin again. I have been on it 3 days. The first days are AWFUL - sick, dizzy, whacko drunk like, but NOOOO PAIN! No limping, no dreading the stairs.
After ~3 days, the side effects disappear completely. The only concern is that you gain tolerance to it so you have to be very cautious about choosing to increase it. Sometimes it's worth waiting b/c you max out on it at a certain toxicity level.
My Dad has had numerous back surgeries for rheumatoid arthritis. His doc said he only had 1 more surgery & that was all they could do. He suggested maybe trying Neurontin. My Dad is PAIN FREE. Seeing my father stand up and chat for 5 minutes w/o having to sit down was stunning.
If it worked for me, heck - maybe it'll work for you too? Not sure what doc should actually scribe this since it's only indicated for epilepsy (they don't know why it works for things like bipolar, etc). I don't care why it works - it just does.
If nothing else, you have my hope and wishes for the best. I've had a good night of crying & feeling sorry for myself -- the thought of a child facing this is unreal. You will have to carry a light of hope for her in her darkest nights. It really does rob you of all hope...
Take care!
Posts: 11 | From Richmond VA | Registered: Oct 2008
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bettyg
Unregistered
posted
quoting marla,
Some people have told me that their children have been bedridden.
Any tips on how to deal with bathing, possible bedsores, atrophy, etc.?
I'm thinking that we should see if insurance might cover a hospital bed.
marla, start another medical post TIPS FOR BEING BEDRIDDEN, bating, bedsores, atrophy
i bet you will get lots of replies because so many here have been/ARE currently bedridden.
hospital beds ...
my dad bought a good used hospital bed that the hospital was selling.
BAD THING, HAD BIG HOLE IN MIDDLE where everyone laid so couldn't get a good rest but was very useful. even came with 1-2 fitted bedsheets.
some communities have LOAN CLOSET of this type of things from families who lost loved ones, and they want others to be able to "borrow" them.
posted
I'm so sorry to hear about your daughter. I was in her shoes when I was a teen. I'm 22 now, and much better.
When I was 16-17, I thought I was going to die too. I was skinnier than skinny, and I was so sick I could barely function. Somehow I got better - I don't know how, but I did.
What people have told you already is true, so I won't add to what was said... except that in addition to the regular LD therapy, the different Standard Process herbs got me where to where i am today.
Sometimes life just stinks, and it's sad we live in the world where things aren't perfect.
If your daughter ever wants some encouragement, or you do, send me a private message. I would love to offer y'all some support.
Charis
Posts: 204 | From Wyoming | Registered: Feb 2003
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Hi Marla, ...just wanting to know how your daughter is. Do you have an update for us?
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I am so sorry you are going thru this. I do not
think I could have done this aggressive trtmt. If
you try the epsom baths, to prevent chills, get her to
hand temper the water to her liking and then if
it chills you can heat it up some to get
comfortable. A new suit may help if you have to
lift her with help. It will not
shock her as much and with chills you don 't want
she won't lose energy through them. I would not
leave her alone in just in case. I agree with
the bowel thing. I take creon to keep in check.
Ptayers.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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