posted
I have been fighting this fight for 2 years now. Not so long as compared to some, but a long, long time for me and my family, without any progress!
The progress that we've made is that my bank account is empty,my friends are gone and my family (not the Lymies) are disgusted. oh, and my credit card balances increase every month.
So what's hard? No progress and not knowing where to go next. I wouldn't care how much money I spend if my daughter was getting any better. She's not. I just want to know what it is that is going help her get better.
2 years of multiple abx and supportive supplements,following ILADS protocol and the only improvement seen was during the first month she had to stop abx due to severe GI issues.
So I had her take a break from the LLND for a few months to heal her gut and get strong. We went to Dr K's clinic and she's only been there 4 months, but isn't showing any improvement. In fact she is getting worse.
Told the LLND about what is going on and she told me that she absolutely needs to be on abx,in fact that it needs to be IV. We don't have a good ILADS IV doc here,so it would mean traveling to another state by plane, hotels and food and tens of thousands of dollars.
What is hard for me is not knowing what the right thing is. What will get her well. When she was first diagnosed I was so hopeful When she finally got a diagnosis, and then we could treat her and she would recover. We were told that she was young and would heal and get her life back. 2 years and she is still bed bound, can't go to school and is losing hope.
What to do?
1) try oral abx again? 2) follow the dr k protocol 3) pull out the big guns and go for IV?
I have read tons and tons of research. Dr K's success is anecdotal and not scientifically founded. Orals kill her gut. iV may or may not work either and there can be serious if not deadly consequences.
Feeling lost and confused. Thought?
Posts: 333 | From Lyme Here Too | Registered: Mar 2010
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
This needs to be in medical, not general.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
Dear LymeMom,
I'm so sorry for what you are going through.
Can you afford IV's?
Perhaps a different set of oral meds would help? Maybe a different LLMD.?
My LLMD also prescribes medicine to kill yeast and has me on two different probiotics to protect my gut, which I take separate from the antibiotics.
My LLMD is also highly skilled in using herbs alone (which is better for people who can't tolerate antibiotics) or in combination with antibiotics.
Perhaps you need to see an LLLMD that could prescribe an herbal approach.
I don't know where you live, but if you send me a PM, I can give you my LLMD's contact info.
Also, there are herbal protocals that people are doing on their own. One is the Buhner protocal. He is an excellent, caring, and selfless herbalist who will answer questions free, if you email him.
There is also the Cowden protocal. The Byron White protocal. And others.
Many feel that you cannot get well without killing parasites. There are herbs that do this.
Also, there is a book called "The Tick Slayer" written by an Olympian athelete who became bedridden with Lyme, took antibiotics for four months with no improvement, so she took things in her own hands through herbs and other forms of natural healing.
she claims she is well now, and even healthier than before she became sick. Her name is Perry Fields. Her book: The Tick Slayer.
Hopefully others can respond to help you.
You have our support. I understand the loss of friends and skepticism from family.
Good luck.
Posts: 1358 | From Midwest | Registered: Apr 2009
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Could you give a brief list of what infections your daughter has been diagnosed with -- either by tests or clinically?
I will come back to this thread hopefully later tonight. I am working on updating hubby's 10 year treatment history for yet another new doc appointment on Monday.
Personally I would take the advice of the LLND and try IV antibiotics. IV rocephin and IV zithromax are both generic. If you can get the PICC line covered by insurance then those meds can be done very cheaply if you learn to do it yourself and do not use home health care. Since hubby's insurance covered 40% of the cost of the meds it ended up costing something like $500 per month in total to do both meds -- that included the meds, IV bags and supplies.
But personally I would try to treat bart for about 3 months first with either factive and rifampin or sida acuta and cryptolepis plus some of the other Buhner suggestions.
Treating bart if that is present will lessen brain and gut symptoms and make the other treatment so much easier.
You could of course try your current approach for another couple of months, but in my opinion you should see some improvements in 4 - 6 months if the treatment approach is the correct one.
I agree that toxins etc are an issue but sometimes too much time is spent on treating the terrain and not enough time on actually treating the infections.
I would also advise getting a bloodslide from Clongen lab to see what actually shows up in the blood. That test only costs $195 plus an extra $50 if you have to order the test kit yourself. The test is a write-in test not listed on the lab requisition form. Just print the form that is on their website and write in the test. Call the lab if you have any questions.
Will be back later.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
I would check into treating her for parasites. Surprised Dr. K. is not doing this, as this is usually his first line of action. Did yiur daughter see him personaly?
The only thing that got me well after 4 yrs of oral abx and 6 mos of IV rocephin was treating parasites using antiparasitic herbs and the salt/c protocol. Rivendell has some good suggestions as well.
Check out parasite symptoms which can be a co-infection of Lyme by googling parasites symptoms.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
Its hard when you hit a wall to keep saying have hope. Its the most frustrating thing to watch and feel daily. God bless, going this road, but I'm not as young as many. you'll get there, its just a struggle when daily is hell. I believe lyme is the root of all evil, we'll get it right. There is a life other than lyme and cos. We''ll find it .
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
Mom Kelley,
Ask for your daughter to be seen by Dr. (D.) K. himself. And don't give in until you do. It is not his clinic, but your daughter needs his help and not someone else's not as experienced. Try again - Dr. K. loves to help children especially. Bring that up when you make your call. Tell the fellow - that this is what you heard from an old patient. He has told me many times that he would rather treat three children than one old lady! I think he means that, but he also has a sense of humor.
Crossing my fingers for you.
Posts: 9834 | From Washington State | Registered: Oct 2000
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posted
Thank you everyone for your compassion, understanding and support. It means so much to be able to pour my heart out and get support
I posted under general support because I was hoping to get some ideas about how to stick the course and have faith in the path you've chosen. I find it very hard to know which way to go. I guess I wasn't wording it correctly. But I am so grateful for all of the advice and support. Glad I posted the way I did and that it made it to medical.
My daughter has Lyme, Babs, Bart, Chlamydia Pneumonia, Mycoplasma Pneumonia and is now testing through ART for RMSF and parasites. She was diagnosed 2 years ago, but had an imbedded tick removed from her scalp 13 years ago. she has always been one to catch every bug going around. Got mono in the 9th grade and never got well.
She was on multiple orals for 22 months but the las 12, suffered continual GI symptoms, and after her last ER visit in December I decided that what we were doing just wasn't working and decided to go a different course. She did great for the first month off of abx, but for the past 3 she has been rapidly declining.
When I took my husband to our LLND last week (daughters past doc) we were asked how our daughter was doing and I told them that she was struggling as stated above. Immediately she told us that w/out abx she would not get well. That in fact she needed IV.
Daughter does have the MTHFR mutations and is very sensitive to everything. My instincts tell me to stay on our current course, at least for a few months. Work on getting her detox pathways working , treat the parasites and when it's time begin abx again.
So here is the hard part! I make the decisions in our family. It's a heavy burden and sometimes it feels like I can't see the forrest through the trees.
How do you find the strength to stay the course and not go from protocol to protocol? How do you make the best decisions you can and feel good about them.? How do you find peace when caring for the people you love most in the world? If I could I would change places with them in a heartbeat!
Different treatment works for different people. No two journey's are the same. I need to find resolve to make the best decisions I can and live with them. It's so darn hard! What if I make the wrong decisions and she never gets well or she is sick longer than she needs to be?
Posts: 333 | From Lyme Here Too | Registered: Mar 2010
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
Dear Mom,
I'm so sorry you have to be going through this and seeing your daughter suffer.. I was having a rough few day's wondering the same thing's for me.. Then I read this...I don't know any answer's , I'm not sure I'm not messing up..
Thank God for TuTu, Keebler, Jackie, TF, Razzle,and so many more here..the list just goes on...
Reminding me it takes time..and to comply...
So I will pray for you and your daughter and for you to get some peace about what you decide to do.
Just take care of yourself as best as can..... Nonna
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Hi Mom,
I am so sorry for the heartbreak you are going thru.
I can only add that I had ALL of the infections that your daughter has. I faced the same dilemma of what to treat first.
The answer came to me intuitevly once I realized that I had a pretty serious parasite infection. The message was "KEEP IT SIMPLE AND STAY FOCUSED ON KILLING THE PARASITES"
That's what I did with salt/c and antiparasitic herbs. Dr. K. treats parasites FIRST and Lyme SECOND.
I would follow GiGis advice and do whatever it takes to get into see him. I wish you all good things and healing for your daughter. You sound like such a great and caring mom.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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Razzle
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Member # 30398
posted
I think the "Mom" instinct needs to be listened to here. You know your child better than any doctor or anyone else can know her.
For me, after 2 years of IV abx and no lasting improvements, I decided to take a break from the abx and see what happened. During that break, that's when I tanked. But I didn't know what abx to try next.
But then I had to get back on abx because I had to go on steroids for severe allergic reactions. And that break from abx and then going back on them is what made me realize I did really need to be on abx or something for the infections.
2 years is a drop in the bucket for some of us fighting this stuff...and with all the coinfections, who knows how long it is going to take. And the methylation stuff just makes it that much more complicated and difficult.
Take care,
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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With that, choose a course of action and know that you can reconsider after a period of time. I always tried to give a doctor a year, but usually it was clear to me at 9 months that I needed to move on.
I finally decided to stop looking at alternatives when I realized that I couldn't really evaluate the doctor's treatment if I wasn't following it exactly. If I was adding anything else, it would make it less clear what was working or making things worse.
Even after I decided to do just what the doctor said, I still thought about what my next plan would be.
I always told myself that I was doing everything I could to help get my daughter well. Some people blindly follow their regular doctors and just accept that they will be ill forever. By looking for answers, you are already doing the best thing. You and your daughter still have hope as long as you are working on it. That is what kept me going during the worst of it.
Posts: 984 | From US | Registered: Dec 2007
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
It's rough stuff watching your kids with this. I think it's worse than having it.
Then there's the added controversey and fight against mainstream, ugh.
Anyways, she'll get well and you'll learn a lot in the process. My oldest was released from care yesterday (after 2 years), though she was an admittedly easy case with "just" lyme, strep and mycoplasma.
My younger one, not so quick. She will probably have another 6 months to a year. She has tackled babs, strep and mycoplasma. She is down to lyme and bartonella.
Current abx do not seem to be hitting the bart but we are staying the course for the most part. Trust in your LLMD is key.
Follow your intuition. If you need to sleep on it, then fine.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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posted
Take care of the MTHFR mutations first, along with parasites, methyl b12, methylfolate, p5p, do the yasko genetic testing if you can.
Posts: 532 | From Texas | Registered: Oct 2004
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Has your daughter had a glutathione push yet (cleans the toxins out of your body)? I had one after my doc's office took blood last visit. It was awesome. I urinated a lot of toxins out of my body in just a few hours.
I like everyone's advice here. Rivendell mentioned a book called, The Tick Slayer. It is quite interesting (half way through it and can't wait to finish it).
For some reason, certain people seem to have a gut feeling of knowing when something is not working for them, so they stop what they were doing, and move onto something else even if it sounds "out there" (that's what the Tick Slayer did). Follow your gut.
Why not try something else if you haven't had any success? Perry Louis Fields (Tick Slayer) kept trying new things until she found what worked for her. I think she had the MTHFR gene too. She also had low iron (low in ferritin).
She really liked the effects of IV vitamin C. She also did the salt/C protocol, fermented soybean enzymes (for iron), garlic pills, acupuncture, cavitation, hot saunas (home made version I'm not sure I would do) and of course, exercise (all that was in the first half of her book). She also freed her house of household toxins.
Rivendell also mentioned finding someone skilled with herbs. That sounds like a good idea. I had to ditch abx and my doc put me on Byron White herbs (so far so good).
I also wouldn't rule out parasites. Perry kept looking for alternative docs and treatments until she eliminated issues one by one. It was a mountain doc (not even an md) who discovered she was loaded with parasites. She just kept going until she found success.
-------------------- --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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