beaches
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posted
I want to just cry and collapse and take to my bed.
As a mom of sick kids I don't have that luxury. I just have to keep on keeping on.
I recently posted that hubs and I would likely be invited to a BC event. Sure enough we were. Told hubs this isn't something I can deal with right now. Not to sound insensitive, but holy #hit, if I'd have had HALF the support these women had I'd be very happy.
But back to what I posted...after 6 months IV tx my DD was doing so very well, better than she had in years. One day she just crashed.
What on earth could have caused such a huge crash? Her LLMD thinks bart is showing its ugly head after months of Lyme tx.
What do you all think? Thanks in advance for any thoughts and ideas.
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Razzle
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posted
Consider adrenal, thyroid, liver, and detox support may need to be added or changed...
Yes, could be Bart or another coinfection...or mold or other toxic exposure...
-------------------- -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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beaches
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Hi Razzle and thx for your reply. I started her on chlorella which isn't making a difference at all.
She's been on LDN for quite a long time which has helped with autoimmune stuff.
As far as mold/other toxins...I believe she tested neg for HLA DR4. We had toxic mold in our basement and remediated for same.
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Judie
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I'm sorry you're going through this. I don't know what's going on. Maybe it's something other than the IV that's interfering or influencing what's going on like a drug or other infection.
I know someone who was on IV. She did awful at first, but it was the cyst buster she was taking in addition. She stopped the cyst buster, and started getting better on month 7.
She then reintroduced the cyst buster at that time and it helped with progress.
Posts: 2839 | From California | Registered: Jul 2012
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posted
SO sorry to hear your daughter is feeling poorly again! I know how hard that is.
I can't say what is bothering your daughter, but just to share.
My son was doing way better and then crashed, over the course of a month until he was worse then ever.
Thought it was lyme and co returning but we discovered it was a massive viral attack. After treating he is back to improving again steadily.
The theory that makes the most sense to me is that having a compromised immune system can allow other "junk" (bacteria, viruses, toxins etc) to build up.
Not sure if that helps but I always find it helpful to hear about others to see if their story fits our situation.
All the Best!
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BoxerMom
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posted
A sudden crash is likely infectious. You and your LLMD will have to do some rule in/rule out and see what she responds to.
I think you have good reason to be hopeful. When the right infections are targeted, she could turn around quickly. That is often the case with relapse, especially with the youngsters.
And for heaven's sake, do not attend a BC event unless you bring an Uzi or a rocket launcher so you can blast all the annoying people who have "real" illnesses so they get actual support and effective treatment (paid by insurance, no less).
Oh! You could bring a Super Soaker! That would be less dangerous but just as confusing and hostile.
anti-malarials with heparin. Art rotate with crypto.
take care,
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Judie
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"The theory that makes the most sense to me is that having a compromised immune system can allow other "junk" (bacteria, viruses, toxins etc) to build up."
Agreed. I have 13 co-infections. Lots are viral. My doc just started focusing on those to help me progress.
Here's a thread I started on other infections to test for:
glm1111
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posted
LLMDs that have realized that parasites play a major role in Lyme disease are finally getting on board and giving their patients antiparasitics.
Hopefully your doc will take this into consideration and try this approach. Seems to be the answer for many and the missing link. So sorry your daughter has relapsed and sorry you have so much on your plate.
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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posted
How long was she off the IV's before the crash? Also which IV meds was she on?
Bea Seibert
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Ellen101
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Was she still on IV when she crashed, or had been off for awhile? What are her symptoms? Yeast is a good possibility.
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tick battler
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All of these lyme kids are infested with parasites. Please consider that route. I have been through the trenches for 8 years with my children since they were 2 years old and that is the missing link. The parasites weaken the immune system so that lyme and other coinfections wreak havoc. IMO you cannot heal without addressing parasites.
Please try to keep an open mind on this and do some research in this area. Dr. K has said this for years and years. And now he supports the CD Autism protocol that is HEALING autism by addressing parasites, along with the viruses, bacteria, fungus and inflammation. He has an endorsement on the back cover of Kerri Rivera's second book. This protocol works for lyme as well.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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surprise
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tick battler, are your kids off all special diets now?
beaches (hugs) I have had many ups and down with my dd, after much hard work, time, money--then to see the regress/ two steps back- it's awful.
I can't guess what's happening without more info- Hang in there--
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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tick battler
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surprise, we are still gluten/dairy/soy/sugar free for the most part. One of my boys eats goat milk yogurt. They get low sugar gluten free cookies once in a while. Even when we are off the protocol, I'm going to continue this to the best of my ability....I don't think it's smart to go back to the SAD (standard American diet) for anyone. We were on this special diet for a couple of years before starting the protocol.
surprise....I KNOW your daughter can get better too! Please reconsider the baby bottle protocol. Over 4,000 parents on the CD Autsim facebook group now. There is a reason why it continues to grow by over 30 members/day. It works!!!! It cures PANDAS and Autism and Lyme and many more things. I know it sounds crazy, but what harm is there in silently reading and observing the posts on the facebook group to see for yourself? Come on, I know you are a smart chick. That is the "more info" that you referred to above that you need. I am not making this up!!!!!!!!!!!!!!!
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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posted
So sorry to hear of your daughter's relapse.
My first thoughts were either candida overgrowth, viral infections, or parasites.
I found with my daughter that after a certain amount of time on abx, her body needed a break to regroup. When we switched to herbals, she had another big leap toward improvement -- each patient is different, but sometimes a switch in protocol for a while yields good returns (even if you have to then switch back to abx -- or whatever the original protocol was -- in the future.)
It is so difficult (and exhausting) to be a parent of an ill child -- big {{{HUGS}}}
I hope your daughter (and you) find relief soon!
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tick battler
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I agree with amomwithhope. Herbals gave us a big jump as well. They do not normally damage the gut as abx do. Then parasite treatment was the last piece of the puzzle.
tickbattler
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surprise
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tick battler I like you :-). Thank you. If you would have told me your kids eat crap all day now and are fine, I'd sign up, LOL.
I am so tired of my crazy expensive grocery bills, and minding what my picky girl eats.
I am Paleo, (no grains, dairy, legumes) but I can do it reasonably financially, but my dd hates nuts and most of what I bake for myself, so GF/CF/SF low sugar is expensive for her.
Anyway- we are approaching the full moon here (Monday the 16th)
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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tick battler
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surprise...My kids were picky eaters most of their lives....as they heal, they are open to new foods. That is yet another sign of parasites...you crave carbs and sugar.
Kerri's son would not eat her diet initially. He ate only homemade French fries for 3 weeks. Then he started to eat other allowed foods. We use a lot of Food For Life brown rice bread (needs to be toasted for best texture) and grass fed hamburger. And Tinkayada brown rice pasta...it is YUMMY. You can make spaghetti with meat sauce with that. That's a start! You can do it! Don't let the diet scare you off!!!!!
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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surprise
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She's been on the diet for 4-5 years, with 2 breaks in between- 1st break back to gluten and dairy, I gave digestive enzymes
and it seemed okay for awhile.... then not, put back on diet 100%, she seemed calmer. Just days ago. I tried to take her off again, as all of our past treatments:
IVIG's, 2 LLMD's, the best autism Dr. DAN! for a year, best homeopathic, gentle chelation, occupational therapy, yes some parasite and tons of yeast treatments,
my husband and I are ready to move on to more normal living.
I have no idea where this beautiful child would be without all those treatments- and beautiful and complex she is.
But it seems clear, much to my chagrin (and negative celiac testing) that I have to keep her on special diets.
Sorry to go on here---beaches, you still there? Is your dd on a special diet/ yeast/ parasites?
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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tick battler
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posted
One of the wonderful things about Kerri's protocol is that you don't need to spend much money. It is the cheapest protocol you will find and the most effective. The CD costs $25.
It is so freeing to not have to give the mountains of supplements that the DAN docs use.
Come on...you can do this without spending thousands on doc appointments and supplements. It is so empowering. You will not be so weary when you see the changes in your daughter. What is stopping you? You are treating yourself for parasites...why not her too?
Sorry if I am hijacking the post beaches, but all of this info is for you too!!! YOU CAN HEAL YOUR CHILDREN, AS I HAVE DONE!!!!
OK...I'm done bugging you...sorry....I just feel like you are so close....
posted
Beaches.. I'm really sorry to hear about your daughter's relapse. I, too, would suspect that candida overgrowth or parasites might be a factor. It usually is.
See what you can do to get her diet under control. I know it's hard with children of any age (adults too!) to change their diets, but it's SO important.
Do you think she was re-infected?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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surprise
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posted
I am NOT separated from my husband!!
I am happily married!!
Sorry, I am going to bow out of this thread, I think I'm talking too much, not being clear.
Beaches-- good thoughts--- you too tick battler and Moms out there----
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
Surprise... why not edit the part about leaving your husband?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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surprise
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posted
Thanks Tu Tu, I did. The sentence actually read to mean:
Years of health treatments not covered by insurance have 'left my husband and I weary financially.'
I'm over sharing on this board! But a great solid marriage we do indeed have :-).
We have been done treating our daughter bio medically and for infections for about a year, except for the special diet, probiotics, melatonin, a few supplement protocols, regular Pediatric care.
I tried to pull/ take her off the special diet again. Not going well. Back to the market $$ :-(
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
Tick Battler, what is this CD you mention? Could you PM me the details of the PANDA info and parasite treatments? Your PM box is full.
Regarding diet, we found going vegan helped A LOT! It isn't a diet for everyone, but it actually is easier to follow than anticipated, and the benefits have been amazing for us so far -- and we were big meat / dairy eaters.
Not sure I can mention a particular Dr. on here, but if you google Dr. M, starch diet, you should be able to find his website and all his information is up there for free. Plus there is a discussion board to have your questions answered.
The book, The China Study, is also a great place to start reading and researching the benefits.
Beaches . . . I hope you find an answer for your daughter's relapse. Being able to live a normal life again does sometimes feel unattainable, but it will happen. When my daughter was so ill, I didn't think we'd ever see her having a childhood or attending college. Yet, she is currently taking college classes -- getting As in them -- and will be applying for music colleges in the fall! Just a few years ago, when she was laid up in bed and not able to comprehend reading a simple sentence or understanding a simple question, I never dreamed we'd see the end to this.
Give yourself time to get frustrated and sad, but then continue to search -- trust your gut -- you'll find the way for her to regain her health!
Posts: 648 | From northeast | Registered: Feb 2009
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nefferdun
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posted
I hope all of you get your children back on track. It is probably a new infection. I consider parasites to be another infection. Most of the time I think of parasites as being protomyzoa, not worms.
I sure wouldn't follow a paleo diet. It causes a huge amount of ammonia to build up and even if the animal is grass fed organic, it is going to have a lot more toxins in it's body that will be passed along to you and your children. If she has protomyxzoa then she needs to eat low fat whole foods vegan(ish).
There are plenty of foods low on the glycemic index that won't promote yeast. When I first began lyme treatment I ate paleo because that was what everyone was recommending. My body odor was horrible from all the ammonia, I was so constipated I needed daily enema's, I had horrible headaches and I was grinding my teeth.
The iron in meat is really bad for promoting growth of pathogens and biofilm. Most people have too much iron, not too little. The iron can build up in the heart, liver and brain causing severe damage. Three years ago my ferritin was 312. Now it is 100. I haven't had red meat in five years and I have been completely vegetarian for two.
What are your daughter's symptoms? Did they change with the crash?
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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tick battler
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posted
amomwithhope - sorry I cleaned out my mailbox! There is a facebook group called CD Autism which is for those with sick or autistic or PANDAS or ADHD children on Kerri Rivera's chlorine dioxide (CD) protocol. It is CURING autism and these other issues.
Kerri's book is called, "Healing the Symptoms Known as Autism." Be sure to get the second edition which came out in January. It is on Amazon for $25.
My husband and I are on this protocol as well. It is very effective.
Send me a pm if you need more info. There is a website with more info and testimonials called: www.mmsautism.org
tickbattler
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poppy
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posted
anyone who is using bleach to treat children needs to make absolutely sure they can't be identified by what they post on public forums
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beaches
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poppy if you want to start a debate or drum up drama please post a new thread. I don't need a thread about my sick daughter going down in flames.
I've made it clear I am open to everyone's suggestions and I am well-aware of tickbattler's previous posts and the controversy therein.
And TB, please don't post about the ptl anymore on this thread. I am well-aware of it and I think most here are too. Feel free to post a link to your thread(s) where the ptl was discussed in detail. Thanks.
Posts: 1885 | From here | Registered: Jul 2012
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posted
As soon as I read the phrase pulsing rocephin I thought of bart and then the symptoms sound like bart as well.
The Dr B told hubby the reason he lost most all the progress he made on his first 2 months of IV rocephin within a week of stopping the med was that rocephin is bacteriostatic for bart but not bacteriocidal.
I don't have much confidence in Bactrim for bart. Hubby needed rifampin, factive and l-arginine for about 1.5 years to clear bart. He had already done Bactrim for at least 6 months along with low dose Zithromax and some cipro and levaquin.
Cryptolepis would be another possibility but dose might need to be very high and I am not totally convinced it is bacteriocidal -- may only be bacteriostatic.
Also need to avoid l-glutamine as it will feed bart.
Bea Seibert
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surprise
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Beaches, sounds like you have a great LLMD, and a good plan there-- your daughter is lucky and blessed to have you-
Inflammation is the name of the game with my dd- (which is what PANDAS/ PANS really is) back we go 100% GF/ CF and clean diet.
Keep on trucking.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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beaches
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Oh yeah surprise, keep on trucking, for sure. Like we have a choice?? I am very happy with this LLMD. We've been through a few of them as you can imagine.
I like to think my daughter is lucky and blessed to have me, and right back at you. Eventhough she's sick I am so lucky and blessed to have her. I think you can relate to that.
I don't think inflammation is a factor for her but heck who knows? DD used to have very high strep levels and Dr. J. was always on the lookout for PANDAS. He said if she started to exhibit OCD type behavior that would be a sign of PANDAS. She never really did, but she was given a supp years ago to help with the mild OCD tendencies. Can't for the life of me remember the name of it.
Bea, thanks so much for your input. I hope you are doing well and thank you so much for staying on the forum after all you've been through.
I am still not clear on bacteriostatic vs. bacteriocidal. I don't have much confidence in any bart tx at this point from everything I've read.
LLMD might very well have started her on cipro or levaquin if I hadn't voiced my concerns. He did mention rifampin, which dd had started years ago and had a big reaction. We will see if rifampin is available in IV form, which DD might tolerate better.
Cryptolepsis is another possibility. My other daughter took that for months with no response, positive or negative.
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beaches
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Bea, interesting about the l-glutamine. A former LLMD was pushing it on DD. The naturopath did not agree and it didn't make sense to me.
Had no idea it fed bart.
The things we learn from each other.
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poppy
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Beaches, that was not starting a debate, it was fair warning, not only for this particular "protocol," but for anything else that could be used against a parent, if that parent could be identified.
Anyone who has been around this forum for years has seen bad things happen to people who could be identified on this forum, especially where children were involved, but not restricted to that.
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surprise
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Beaches, when I read your 2nd post here with details, like Bea, I thought: Bartonella. (But I am Bart hyper sensitive)
Re: PANDAS- believe me you would know. It's intense, it's own special world, and OCD is always present for it to be actually PANDAS.
Hope you can get some down time- rent a movie, see a good show.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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beaches
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Poppy, point taken. Thanks.
Posts: 1885 | From here | Registered: Jul 2012
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beaches
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surprise, yes, I know that PANDAS is unique. I've always been on the lookout for that, and thankfully that is not one of our problems/dx.
So for right now we are treating bart with the bactrim. And I will add in the A-bart too. Do I think this is the answer? No, I don't. That's just my gut reaction and I could be wrong.
But I don't have any other answers as to what caused my daughter's relapse.
Thank you again to everyone who posted. And please continue to post. I REALLY do appreciate your thoughts/ideas/prayers.
Thank you.
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Ellen101
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The GI symptoms makes me wonder about leaky gut. After being on antibiotics for awhile that could definitely happen. Which bars is she eating?Has she ever ha food allergy/sensitivity testing done? The yogurt and cheese may not be good for her.
Have you heard of the Autoimmune Paleo diet?
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beaches
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Hi Ellen, yes leaky gut is always a concern. She take probiotics regularly. She eats Kind Bars which consist of nuts and dried fruits. Her food allergy panel came back negative.
Yes, I have heard of the Paleo diet.
I could fling myself over a cliff every time I hear about special diets when it comes to LD.
I do the best I can with the diet. We are GF and I focus on lean proteins like chicken and turkey and seafood. I always have plenty of fresh veggies and fruits available for snacks.
Honestly if diet was THE answer to this damn disease, I'd have found it years ago and my family would be well.
Diet plays a part but is NOT the end-all-be-all.
Posts: 1885 | From here | Registered: Jul 2012
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kelmo
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Someone on this forum once went to my daughter's doctor to get treatment and asked how she was doing.
He told us and it freaked my daughter out. I really had to pull away from the forum. Sad.
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Ellen101
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Beaches, I certainly never said diet was the "cure".
On a side note, I went to a support group last night in which a dietitian spoke. She said hidden gluten is the biggest issue for people trying to follow a GF diet. I was amazed at the different ways we can be ingesting it without even realizing. Not to mention the side effects caused by gluten ingestion, which can mimic Lyme.
Nefferdun, I do not agree at all with the ammonia build up with Paleo. If the diet is eaten right you are eating fruits, vegetables and lots of healthy fats as well. Just for the record, no constipation here, I go ever day . Yes if you ate just meat for breakfast, lunch and dinner you could run into issues. But that's not the Paleo diet.
Posts: 1748 | From United States | Registered: Dec 2011
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Beaches, For what it's worth every time I have relapsed it has been Bart. I'm in a relapse right now. I have relapsed it twice now. I did a lot of Septra and that doesn't seem to get it for me...it will knock it down but not get it.
I'm on Rifampin, Mino, Zithro and I'm hoping that will get it. This whole thing is so frustrating...
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beaches
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kelmo OMG. That is scary! Very scary!
Ellen101 I didn't take your post to mean that diet was a cure. I am just so sick and tired of doing everything right to the extent possible re: diet and it not making the least bit of difference.
Thx for the input RC1. Yes, it's very frustrating to say the least. Hope you feel better soon.
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