posted
Does anyone have this autoimmune issue? I have read that patients with HLA DR4 have a very tough time with recovering from chronic lyme.
It is starting to worry me because it doesn't seem like anything has helped my daughter, although her recent blood results state that she no longer has babesia and bartonella. Also, on a repeat of her western blot, some bands have disappeared but #31 has appeared.
If you have it, please share your stories of what you are taking, how long you have taken it, and what your success rate is.
Right now she is starting her 7th week on IV Rocephin with no improvement (that we see, there could be, but nothing major). She also started Doryx this week.
CD57
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posted
I think there are a lot of discussions on here about this. I don't think it means that she can't get well. What were you told that it means?
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lpkayak
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i have it and 2 also. i thought it meant when i bumped into Bb it started an arthritis in me that had to be dealt with as arthritis-not as lyme.
if i get rid if every last kete(ha!) i will still have ongoing arthritis.
i seem to be following this. my knees started to go in my 30's and i had them replaced at 58
my hands have been going and i need surgery
my back shows degeneration and i am limited in what i can do
i had aggressive oral tx for 3 yrs-was reasonabley good for 5-6 yrs-altho arthritis con't to get worse-them mental and phsical trauma in about 4 yrs ago made me relapse
this time i am txing the slow and steady way and responding...but it is hard to think of ever being 100%
i will never do many things i had put off for my empty nest days...hope i can do some of them tho
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
I have HLADR4 AND I also got the lymerix vaccine back in 1999 or 2000. I had read later (after being diagnosed with lyme in 2007 that many people who received lymerix and had this gene had some sort of autoimmune arthritis problem).
I got lyme disease after the vaccine by a tick bite (maybe even had it dormant before since I spent a lot of time in the woods as a kid- lots of tick bites, but won't really ever know).
I got really sick in 2006 and diagnosed in 2007. I was on abx. for 17 months and am in remission- have been off them for 8 months now.
So, my point is that even with this gene, your daughter can get better. I wish I had never even had that test done, because all it did was put a negative thought in my head (after reading some responses about this) that I would end up with an autoimmune arthritis problem.
How old is your daughter? Does she have lots of joint pain?
I did have some joint pain, but it seemed like the muscle pain for me was much worse, also lots of neurological issues, among other things.
I mainly took biaxin/plaquenil throughout my treatment. I also took 7 months of mepron (for babesia) and 4 months of bactrim (for possible bart.) Throughout the whole 17 months I was always on either biaxin or zith, and for maybe 7 months of it, also on plaquenil.
The long term biaxin/plaquenil helped me a lot, but treating babesia really helped me.
I also rifed throughout the last 9 months of my abx. treatment and then some time afterwards, took some herbs, exercised a lot, used an infrared sauna 2x a week, tried some infrared light treatment with a PE-1 (but was mostly well at this point, so it is hart for me to gauge how well this would have worked for me).
I did 55 sessions of IRT, most of them all while on abx too.
I took some herbs too, like Noni, Cats Claw, Grapefruit Seed Extract.
At this point I am only still taking Oil of Oregano about once a week, Grapefruit Seed Extract around 3x a week. I still exercise and I use the infrared sauna about 1 time a week. I haven't rifed in a few months, but may do some rifing this weekend.
Has your daughter tried biaxin/plaquenil? I know of two other people who went into remission with this combo alone.
Hope this helps, Maureen
Posts: 871 | From NJ | Registered: Mar 2007
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CD57
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I don't even want to get this test done for the same reason Maureen said. I read a horrible post on here that basically said if you have it you are doomed--you will never get rid of Lyme, you will develop RA, and you can't detox.
Maureen, did you use lots of binders during your treatment?
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adamm
Unregistered
posted
What about those with DQ2--the MS gene? I figure I probably have this, seeing as my brain started rotting 2 weeks after my bite and nothing's been able to stop the process.
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i am pretty sure i have the DQ2 also Adam. I will check that blood work to see.
Hmm....i don't think i took that many binders. mostly just drank lemon water, did drink a lot of green tea and yogi detox tea.
i mainly used the infrared sauna as a mode of detox and sometimes used the rebounder.
in the beginning of my treatment (maybe first 9 months) I used the foot detox pads and an ionic detox foot bath for a few months later on in treatment.
Posts: 871 | From NJ | Registered: Mar 2007
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posted
Oh, my llmd didn't even want me to get that blood work done, probably for the same reason that i mentioned above. i don't think it really changes anything for the better at least....
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TerryK
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If you look at much of the information about HLA DR4 and Lyme you will see that it is written by the Steere camp. I wouldn't put much store in their interpretation.
They state that those with HLA DR4 are non-responsive to abx and are prone to develop auto immune effects. We know active lyme infection can cause autoimmune disease. Steere camp does not agree with this.
We know that those who have an active infection and who seem to not respond to abx are often full of toxins and it is the toxins that keep them sick. We know that some of us cannot detox very well.
We know that those who have an active infection and who seem to not respond to abx sometimes have unidentified co-infections that need to be treated. Something that is not recognized by the Steere camp.
I haven't had the testing for this particular issue but I suspect that I have it. I know that not all solutions have been found yet but I feel very certain that there are solutions.
Until I am much better, I will keep working on the infection, work to get my immune system normalized and work to get the toxins out. I will keep looking for infections that have not been found yet.
I will never give up and I will certainly NEVER consider what the Steere camp proposes as the truth.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
Thank you, everyone. My daughter is 16 years old. She is now in a wheelchair and has been since January. Before then her walking was very ugly, but she tried with the use of a walker.
I, too, read (from 1 - 5 a.m. today, probably not a good thing to do) that those who have HLADR4 and haven't made progress on antibiotics basically won't make any progress. This made me very upset thinking that this child is not going to get better. How can that be? There are so many treatments.
She can't have a picc line or port because of a clotting disorder. So we do IVs and they generally last a couple to four days. We either infuse at home or at the doctor's office. Her lyme neuro basically told her if she doesn't make any progress on the Rocephin in the next month then he is stopping it. He only does it for three months and if no improvement he stops. Then he went on to say there really wasn't anything more he could do.
After upsetting both of us, he checked her reflexes which were good. She can slightly wiggle her toes. She has no atrophy. He was happy about that. We go for land and aqua therapy four days a week (in a row). This is our third week like this, and before that we went to just physical therapy at another facility, but that one does not offer water therapy so we had to switch.
She is going for an EMG on Monday, and if she has any neuropathy, then he will prescribe IV IG for her. I have read that IV IG is good for auto immune disorders, but I guess the insurance only pays for it if you have neuropathy.
When she was four she had ITP, idiopathic thrombocytopenia purpura, in which instance her body was killing off its own platelets. She was hospitalized for five days, almost bleeding to death, at which point they gave her the IV IG and she bounced back immediately.
Somehow I truly believe that she may need this to get better. I guess I need to consult an immunologist (never knew there was such a doctor) and see what he/she thinks about her situation.
I wish there was a "mommy" doctor that you went to and just said "okay, now you need to do this, and then do this, etc." like we mothers do with our children. This lyme disease really leaves you in the lerch and not knowing where to turn. I don't like that feeling.
Thankfully there are great forums like this one to help us. Thanks again.
Lisa
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TerryK
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Lisa, I'm so sorry that you and your daughter are going through this. Your daughter is very lucky to have a mom like you.
I would start asking around for the ILADS LLMD who has the most experience/success treating people with HLA DR4. Have you contacted Dr. Jones? I'd probably write to someone at ILADS and find out what the general concensus is about HLA DR4.
A few things to consider:
Has she been tested and or treated for any/all possible co-infections? Clinical diagnosis and treatment are important regardless of test results. Also, parasitic infections and viruses? In addition, funguses may be important.
Have you looked into methylation cycle issues? Biotoxin issues? Is she being exposed to mold? Does she have heavy metals? Have you tried FIR Sauna?
Personally, I would hit the detox as hard a possible and see if that yields some results for her.
Wishing you and your daughter the best.
Terry I'm not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
Thanks Terry. She did have babesia, bartonella, and erhlichia. Recent tests show that they are gone, although I doubt it.
We do see Dr. J in addition to her neuro dr. We will see Dr. J again in June. How do I write to ILADS (brains not working too good -- no sleep) about this topic?
Thank you for your suggestions.
Lisa
Posts: 51 | From Connecticut | Registered: Sep 2008
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posted
HLA DR4 is in essence DQ8 and 7 see http://en.wikipedia.org/wiki/HLA_DR. Check the wikipedia HLA DQ page too to decipher the terminology.
Celiacs are usually DQ2 or DQ8, and you can see in the ccharts how many % of the population have what alpha and beta chains.
So these are quite common. I think the tests you are writing about are HLA DR by labcorp.
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SForsgren
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HLA DR4 is not really auto-immune. It's more about recognition of various biotoxins. Probably many people here have it. I'd bet it may be 1/4 to 1/3 or more of us. 3% I believe in the normal population.
In my opinion, it just says to us "don't forget to put detox therapies into your treatment program" and "get out of any environment that leads to continued exposures such as molds".
Treating the bugs that produce the toxins and also supporting your treatment with detox leads to good outcomes I believe.
I don't take this as a significant problem. I'm HLA-DR4 and I'm back to 90% most days.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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TerryK
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Since you are already seeing Dr. J., perhaps ask him what the ILADS general concensus/experience of HLA DR4 is (if there is one). I wouldn't stop there though.
I would start here with ILADS. Explain your situation and ask who has the most experience with this who might be able to help your daughter. Also ask them if there is a general concensus of possible outcomes/most effective treatments etc..
I'm not an expert but I've read in several places that the tests that are done for the biotoxin issues are not the same as the HLA DR4. I don't know more than that but wish I knew what the differences were.
northernlights - I couldn't get to the page in wiki from your link.
http://www.personalconsult.com/articles/aggressivelymetxfailure.html This HLA test is not the HLA-DR4 test that is involved in aggressive Lyme arthritis. It is also not the HLA-B27 that is found in people with ankylosing spondylosis, various types of arthritis, and some people suffering from psoriasis, inflammatory bowel disease or other autoimmune disorders.
Hope I'm not confusing the genetic stuff further.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
okay, probably a stupid question and been covered many times before- but what does this mean
Have you looked into methylation cycle issues?
What are methylation cycle issues? have seen it mentioned before but never really knew what it was, figured i would ask here about it and its relationship to lyme.
thanks, maureen
Posts: 871 | From NJ | Registered: Mar 2007
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SForsgren -- what type of detox should she do? Don't forget she is 16 and does not like to drink a lot, especially water. She does take epsom salt baths, but that is it.
What should she be doing and I will stress the importance of it once again.
Our naturopath started a detox program using hot/cool compresses, stimulating the lymph, etc., so I scheduled her for it. Well, she wouldn't go to it.
I think she is too stressed between not feeling well, going to all of these appointments with therapy, IV, doctors, etc., and then there is tutor/school with all of its homework so it makes for a very long day. I think she should be on something for stress or to improve her adrenal function which I am going to have checked again.
Lisa
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lymeHerx001
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no which I cant believe because I cant handle herxes
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SForsgren
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Detox agents are things like chlorella, zeolites, pectasol-c, Glucomannan, fibers
Homeopathics like Pekana apo-Hepat, Renelix, Itires Detox kit homeopathic from Heel.
Water is important. If she can't flush out toxins, she isn't likely to improve in an optimal way. Add some lemon to it.
Saunas if possible. Epsom salt baths can be bad for some, especially some with Lyme.
Heavy metals have to be looked at and that's a whole different area of detox.
Neuro Antitox II from Jernigan is a good option to help with biotoxins.
Lots of options...
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
I may have already been mentioned but it may be a good idea to have some "binder" on board as her body might not be able to eliminate the biotoxins (mycotoxins, lyme toxins, etc). Some examples: --charcoal --zeolite --modifilan (a type of seaweed) --citrus pectin --betonite clay --CSM (a prescription)
Posts: 236 | From Illinois | Registered: Feb 2009
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TerryK
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Hi Maureen, I'm cutting and pasting from other threads where I've written about methylation issues.
Some of us have mutations in our methylation cycle that make getting rid of toxins and infections very difficult. I had the testing for this on the urging of my LLMD and found that I have some significant mutaitons in this area that make getting rid of certain infections very difficult. Also makes getting rid of many toxins hard including metals and other chemical toxins in the environment.
With certain blocks, one can have a problem getting rid of viruses, parasites and bacterial infections and some mutations can severely impede detoxification but there can be many other areas affected as well.
One can use special supplements to get around these blocks. Dr. Yaskow (a doctor who pioneered nutrigenomic treatment) states that if you have these defects, you must treat them, otherwise it's like having diabetes and not treating it.
If you have certain genetic mutations in this pathway, you might need to avoid sulphur causing supplements and food as they can potentially make you sicker. You can also have a problem getting rid of ammonia. Coupled with lyme, this can lead to elevated levels of ammonia which may cause more brain fog and other symptoms.
here is the yahoo group for methylation cycle issues. This is mostly adults, some with lyme disease, some who are diagnosed with Chronic Fatigue Syndrome. You can ask questions there. http://health.groups.yahoo.com/group/CFS_Yasko/messages
posted
I have this gene as well as the "dreaded gene" and the low msh gene.
What I know helps is my infrared sauna. Also, I do have methylation issues as well as glutathione issues and after my last abx round, which was very short, I started to develop parksinson or ms like tremors and gait problems. I felt like a puppet and my joints were strings.
What helped was glutathione IV and Myers cocktails once a week for 6 weeks. I am getting them every two weeks now. Some people there go longer than 6 weeks in a row. One man there with what looks like bad arthritis of his hip has gone for 7 years weekly. He is fine. I dont know if he has lyme or not.
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TerryK
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Thanks for mentioning the sauna. I really do need to get one.
What is the low msh gene? Those who have the dreaded genotype (me too), which includes difficulty in detoxing mycotoxins, can have low msh as a result. Is that what you mean or is it something else?
Also interesting to hear about your last abx round causing ms and parkinson's symptoms. I hope your symptoms are much better now.
Terry
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Shosty
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Lisa, all I can say is that my daughter and I have lived with the same kind of situation that you and your daughter are in, for quite a few years now. I would say to you that things will probably improve, but not get all the way better.
The controversy over autoimmunity and Lyme is complicated, and is not limited to Steere and co. In fact, several LLMD's write very intelligently about it. Jones talks about it too. You have probably been reading about it online.
There is no question that Lyme does, in fact, trigger autoimmunity, and that people with the HLA-DR4 marker are vulnerable to that.
The real question is whether the autoimmunity continues even after the infection is eradicated (or controlled), or whether it can be "cured" when the infection is gone.
If the autoimmunity continues, and Lyme was a trigger for a long-term chronic problem, then, the theory goes, long-term antibiotics are not useful. On the other hand, some people feel that long-term antibiotics will heal the autoimmunity along with the Lyme.
I used to believe in long-term antibiotics, but have changed my mind in recent years, after getting off the abx. Both my daughter and I have actually felt a lot better since doing an elimination diet, ridding ourselves of various hidden food allergies. I was the most skeptical person on the planet about this, but it proved very useful.
It is so easy to feel overwhelmed reading everyone's suggestions. It helps me to think about just kind of healing around the edges, or healing in layers like an onion. Anything you can find that is helpful for your daughter is good, but you don't have to chase a holy grail of perfect health, which may or may not evolve over a longish period of time- not soon, but not never.
Has your daughter had lupus tests? We both test positive for lupus, for what it is worth. Rheumatology is very vague in a lot of ways, but having a full battery of rheumatology tests would help clarify things. Any doctor can do them. Just know that rheumatologists are very hostile to Lyme treatment past a month or so.
Dr. Jones is the first one to tell us about the HLA-DR4 marker, and the first one to test for that, as well as to do the rheumatology testing. It was at his office that the possiblilty of lupus was first raised, despite the ideas on Lymenet that lupus is another manifestation of Lyme. Jones recommended treating the lupus independently, along with the Lyme treatment.
The purpura might be autoimmune- or did they say it was allergic? My daughter just had allergic purpura from a med, and it was scary!
Anyway, you are not alone in this muddle, and it is so painful watching your child go through this. Believe me, I know exactly how you feel and so do a lot of others. Take heart in the support and tell you daughter too, that she is not alone in her situation.
One other thing: our daughter ended up doing really well in school, even though, like your daughter, she did not go for months at a time. She ended up at an Ivy League college, which she loved. She is now on medical leave- so it is not a tv movie kind of thing. The struggle goes on, but we believe she can carve out a life as she perseveres, despite her health issues.
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TerryK
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Shosty - just want to mention that lupus being part and parcel to lyme is not just an idea on lymenet.
My sister developed lupus while in lyme treatment. I had a conversation about it with my LLMD and my LLMD stated an opinion that borrelia inserts itself into our DNA. Our immune system attacks us in an attempt to kill borrelia.
MacDonald's work showed that Borrelia inserts at least a segment of it's DNA into human DNA in the brains of alzheimer's patients. Here is his article on transfection.
I wish there were more answers but there is so much that is unknown. If we can ever get the IDSA to stop spending all the limited research money, we may be able to make progress in areas that actually help patients with chronic lyme disease.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
Hi Terry.. there is a low msh genotype as well, and my msh has been low, but who knows if the genetic "correlation" or the toxins have caused that. Im not too keen the hopeless genotyping. They cannot mean doom. if so I am done in. I also wish I had never had the Shoemaker tests. I dont see how they are helpful for me, esp how they are framed. I think the other profiles on detox like the detoxigenomic and the methylation panels are more helpful for me.
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CD57
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R62, how were the Shoemaker tests not helpful? You mean the vision test thing?
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Tracy9
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My 13 year old son has the gene, too, but has no autoimmune issues, no lupus or RA markers either. Dr. Jones did the test but never even mentioned it to us, probably because there weren't any other indicators to be concerned about? I noticed it was positive on his labwork though.
He has just gone through six months of orals with no change to speak of; a very aggressive adult like protocol. Today, he had his first infusion of IV Rocephin, also an adult like dose.
We are expecting him to be on six months of IVs plus the orals. I'm hesitant to say too much being mindful of LouB's new post about not detailing protocols here.
Hopefully this will help, but our son is Congenital, and doesn't have the classic sick type symptoms, we are dealing with mainly all neuro symptoms that present as ADHD, anxiety, depression, learning issues, etc. His medical issues are more around asthma, always sickly, small for his age, and a long history of all kinds of stuff. But not the classic Lyme symptoms the rest of my family has.
Sometimes I'm not quite sure what I'm supposed to see for improvement. But I do believe that gene is not as "dreaded" as I had been led to believe.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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So sorry you and your daughter are going through this. Unfortunately, your stories are not unique.
I don't really know what to make of the HLA DR4 issue, as I am still trying to understand it myself. My family has a strong autoimmune history, including hashimoto's and lupus. My kids' HLA DR4 levels didn't cause any concern with Dr. J. and despite my 30+ year history of severe autoimmune issues, my recent HLA DR4 test is "undetectable" Go figure.
My daughter has been very ill with LD. It's a long story, as they all are and we've been riding a rollercoaster. But what I need to tell you is that we finally...now in the 4th month of rocephin....are seeing that little light at the end of the tunnel.
My daughter has improved to the point that she can go out for awhile, study, etc. She still gets tired and needs to rest and sleep and she sure isn't running around the block, but when I think about how sick she was (bedbound much of the time), this is a definite improvement.
So, in my opinion, 7 weeks with little or no improvement on rocephin doesn't really mean much, especially when Dr. J. told us my daughter would be on it for at least 12 weeks.
My daughter also recently began seeing another LLMD who put her on a whole bunch of supplements, clincally dx'ed her with babesia and bartonella and began addressing those coinfections. But, her improvement was already underway with the rocephin.
My advice to you, for what it's worth, is to ride out the rocephin for at least several more weeks, provided your daughter is tolerating it well (make sure she is on ursodiol to avoid gallstones), and in the meantime make sure she is taking a lot of good supplements and probiotics.
I also would definitely not go by blood tests in determining whether she still has babs and bart (and lyme for that matter). Because these tests are so unreliable to begin with, there's really no point in using them as benchmarks to decide when treatment should end. If she's symptomatic, she should be treated. Dr. J's rule of thumb is to continue to treat two months after symptoms have subsided.
And, from what I remember, you should make sure that she is gently detoxing, especially given the HLA DR4 result, with lemon water and perhaps epsom salt baths. Others are much more well-versed on that issue than I am though.
Hope your daughter is feeling better soon.
Posts: 214 | From where ticks flourish | Registered: Dec 2007
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Tracy9
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I agree about the length of time with Rocephin, Dr Jones said at least six months for Cody.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Shosty
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Terry K, I did not say that the idea of lupus/autimmunity being Lyme is limited to Lymenet. In fact, I mentioned that many LLMD's have written about this. I was just saying that Jones himself is the one who differentiated lupus from Lyme for us, and raised the issue of a separate autoimmune disorder. This surprised me, all those years ago, because my initial reading on Lymenet had led me to think that lupus would be considered, by Jones, to be part and parcel of our Lyme, not a separate illness to be treated independently.
I do want to let parents know that with my very sick kid (my other two responded to treatment in a matter of months), and myself, longer term antibiotics caused some problems. Mainly GI, with yeast causing leaky gut causing massive food allergies. My daughter missed months of school from the daily headache that resulted from these allergies, prior to our figuring out the cause.
I also feel that our immune systems have been affected. Both my daughter and I overreact to every med, and get "immune-mediated" reactions to meds that are distressing. We also, as I said, are on very limited diets, seemingly on a long-term basis.
I think that giving Lyme treatment a try is smart, but that stopping the antibiotics is also smart, if little improvement is seen in, say, 6 months.
Some of the meds, particularly since they are given in combos that may be synergistic, really do have harmful side effects that are not necessarily short-term. If I could go back, I would have taken us both off years earlier.
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lymemomtooo
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Lisa, good luck..By now you know this is Hell..Just do your best to get your daughter well before she is 18. It is a whole different ball game then. They can refuse to see Drs and refuse treatment and you have no options.
Also sex, drugs or alcohol, self mutilation or suicide attempts can become theirchoices/ medications or excapes from reality.
Shoe tested and discovered our daughter had the dreaded gene as he called it. He did not mention arthritis. He mentioned that she was more susceptible to anything that came along and did not naturally detox well.
She was on a csm regimine with little explanation and some actos. It damn near killed her..So be careful in your endeavers. It seems like you have done your research and already been baptised in this Hell...The healthy food approach is definitely a plus. There are some good suggestions on this post from others.
I think if you can try to get the immune system to re-set itself, if that is possible, you have a good shot at it.
Our daughter also has brain damage from an under treated / undiagnosed in the ER. Actually sent home with a chunk of the frontal lobe damaged and now missing) head injury and lyme or bart encephalitis. So we have little cooperation from her with protocols and compliance and the buggers have also wreched her pancreas so we deal with insulin and blood sugar levels daily.
Been to the ER twice in the pst month or so with some of this. Not fun but we seem to be on the other side of the nightly out of her mind spells and the suicide attempts. She can also work a day or two a week and took 2 post high school classes with some success and has some friends.
So no matter how bleak, there is some hope with these menacing conditions. hugs. lmt
Posts: 2360 | From SE PA | Registered: Mar 2004
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TerryK
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Hi Shosty - This is the comment I was referring to: "It was at his office that the possiblilty of lupus was first raised, despite the ideas on Lymenet that lupus is another manifestation of Lyme."
I haven't read anything from LLMD's about lupus so I'll look around and see if I can find more. So far I haven't developed lupus although through the years I've been constantly tested for it due to my symptoms.
Shosty wrote: "This surprised me, all those years ago, because my initial reading on Lymenet had led me to think that lupus would be considered, by Jones, to be part and parcel of our Lyme, not a separate illness to be treated independently"
This surprises me too and I appreciate you writing about it. My understanding is that some doctors do feel it will resolve with treatment although I'm sure they would not give a guarantee on that.
Shosty- I want to tell you that there is hope that you can heal your immune system and leaky gut. I have had lyme disease since I was 5 years old. Almost 5 decades. Relapsing and remitting. Finally, in my early 30's, all those years of untreated infections caught up with me and my immune system had a meltdown.
I avoided antibiotics my whole life because they made me so sick and we thought I was allergic to most of them. I still developed the leaky gut/yeast issues and over-reaction to medications that you describe even though I had no antibiotics or herbal treatments for lyme. I did have abx for another condition which allowed a 5 year remission.
Before I knew I had lyme I had made great strides in healing my gut and immune system through the use of herbs and muscle testing. I've been on abx for 3+ years and with the use of IM rocephin, my immune system seems to have gone haywire again. I know it can be healed because I've done it before.
Since 80% of the immune system is related to the gut, it seems very important to keep working on healing the gut whether on abx or not. Sounds like that is what you are doing and I pray for all the children and mothers here who are having such a horrible time.
Tracy and others - It might be worth considering methylation cycle issues as part of the problem. Just a thought.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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quote:Originally posted by CD57: R62, how were the Shoemaker tests not helpful? You mean the vision test thing?
The blood tests.
The way they are framed is devastating. dreaded gene... chronic of the chronics...
I came away believing that only CSM and maybe Welchol could save me from my fate if I was one of the lucky ones since it doesnt work for everyone.
It took months for me to believe I had hope and I still can fall back into this "dreaded" perspective when I am hitting a bad herx or not clearing one in a few days.
The detoxgenomic test is a double edged sword as well. It does interpret genetics that are indicated in cancers, not just detox ability. I didnt know that. So now I have lung, colon, breast, ovarian, renal cancers to "worry about". One study (because I had to find out what this all meant) said that 80-90ish percent of folks with ovarian cancer had my genetic polymorphism on Cytochrome P450.
Genetic information is a double edged sword.. how it is worded and framed is very important. I stil need "talking down" from the detoxigenomic test. I feel so defective and doomed.
The info if provided in a proper healthy context.. as in how Scott has worded the Shoemaker genetotypes.. it just means we need to focus on detox more.. thats a healthy way to look at it. I think its important to have a healthy frame of reference and reality when dealing with these results.
Posts: 861 | From USA | Registered: Dec 2008
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
R62 - I know how you feel. I have many genetic problems too. I was shocked when I read mold warriors and it seemed to indicate that those with my genetics would not get well.
I have twin sisters who are identical twins. One is bedridden and very ill. The other is sick but lives a reasonable quality life. One was on low dose doxy for many years for acne, the other was not. The one of low dose doxy has taken steps to deal with her genetics (clean water, clean environment, supplements, FIR sauna etc.), the other has not. Of course the one who was on low dose doxy and who works at dealing with her health issues has never gotten nearly as sick the rest of my family.
In my view, knowing our genetics gives us some clues as to what we need to do to help ourselves. I don't beleive that we will not get better. I do know that no one has all the answers and that we have to keep looking and trying until we find the answers.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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CD57
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Member # 11749
posted
R62, I totally agree! I would be one of those people who would need talking down so I don't even think I will do the tests....I'll just try to make sure I focus more on detox, detox.....
Posts: 3528 | From US | Registered: Apr 2007
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posted
Terry.. that is interesting. Thank you for sharing that! In the Living Matrix.. I think it was that dvd.. they talked about twins and one manifesting and illness and another not.. I should pull that one out again...thank you for the positive perspective. I need to hear it.:-)
CD57.. the most direction I got from the test is to eat lots of cruciferous veges, fruits and vegetables, onion, garlic... detox in ways that bypass liver... support liver, but the test does help with what kind of support and the methylation panel would probably be more helpful because I THINK it only goes into detox issues such as whether your body might have the tendency to have problems with ammonia and sulphur..
if there are other ways to find out if your body is having those issues for real, then that might actually be better...
Now I have to retrain my mind that reality does not lie in dna.. which in one sense is an opportunity for me because that will involve an internal paradigm shift that I know will benefit me.
I did also get an explanation for some physical events that have been happeneing to me. My genetic profile has a tendency to not reuptake adrenaline normally.. this I have obviously felt for years.. now I know why... if that on gene is the only reason why... so how helpful?
I know glutathione could be an issue for me as I am missnig one gene set there out of three .. and glutathone IVs have been helpful. But you can find that out trial and error, and the need does not have to be because of a gene.
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
IM DR-4 Pos and I will get better. Period. I had 8 months remission and will get there again.
Just have to focus on detox alot w/ this genetic predisposition.
Right now as an example I am using burbur, parsley, pinella, the complete pekana drainage kit, zeolites, Glutithione and welchol.
So for those of you that think this marker is a death sentence, it is not. You will and can get better w/ enough vigilance.
I began treatment w/ the guns blazing "herxing" like all hell only to discover that detox is as important if not more important than lowering microbe and metal loads, especially if you are DR4.
Now, 2 yrs later, detox is the first priority, and I build onto that.
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and we've been riding a rollercoaster. But what I need to tell you is that we finally...now in the 4th month of rocephin....are seeing that little light at the end of the tunnel. 
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