Not to discourage anyone, but does some people just not get better?
I've been posting for 3 years now about my son. Have been given very good advice and encouragement but yet my son still isn't any better.
Now on 4th LLMD. The prior 3 were also "Great".
The money is running out and I'm losing hope.
I know, I know, don't loose hope. Well its sometimes very hard to stay upbeat.
Don't worry all, I will continue to treat but I feel sometimes I'm giving him all this medicine for what. So far nothing.
He's completely mentally disabled and frankly, getting worse.
Not so much where outsiders can notice, but I notice.
OK, sorry for venting.
Just thought he'd be at least a little on the up side after all this time and treatment.
I pray that 1 day I post that he is better.
Good luck to everyone fighting this horrible disease.
His Mom
Posts: 158 | From NJ | Registered: Jul 2010
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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
I haven't gotten any better... Out of money and really didn't find the LLMD all that helpful.. So what to do I am just trying to hang on and find a doc that is lyme friendly that will take my ins..
I was functional till the holidays and now I feel I am back to sq. one. By functional I mean I was able to leave the house every now and then and maybe do one chore a day.. No where near like I use to be and don't expect to be for now .. I am trying to build my immune system and lower inflammation with supplements..
My main problem is vision, vertigo, off balance , ringing in ears , fatigue, and horrible bone pain that comes and goes.. I am a roller coaster from one day to the next and its so hard for others to believe I am sick... even family.. I now try to smile and say I am fine even if I can't get our of bed.. Oh, depression/ anxiety is bad too..
So sorry you are going through this with your son Never be sorry for venting , that is what we are here for..I am just sorry I am of no help.. Please keep us posted.. hugs
Posts: 1058 | From VA | Registered: Oct 2010
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seekhelp
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Member # 15067
posted
I never got any better w/anything I've tried.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Have not researched and don't remember which infections and what treatment your son has had. By the way what is his age?
These are just general comments that may or may not apply to this case.
First off -- I know hubby stayed with several of his LLMD's for too long (a couple for 3 years) when they were not really helping -- but in someone as sick as you say your son is maybe you are switching LLMD's too frequently and have not given any of the docs long enough to see real progress?
From my observations over the years -- one of the biggest hurdles is knowing what infections you have and then figuring out how to treat them. But missing an infection -- bacteria, virus, parasite, fungus or spirokete -- will usually keep someone sick unless they are very very lucky.
The 2nd thing that is sometimes overlooked is nutritional support. Almost everyone with chronic infections is deficient in many basic nutrients that are needed for healing and immune system function and detox etc etc. If the LLMD's are not supplementing nutrients then it just makes it that much harder to recover.
When you say your son is mentally disabled are you talking about neuropsych issues or memory and cognitive issues? Treatment needs to be tailored to address whichever is the problem.
I need to find the link that someone sent me recently about using acetyl-l-carnitine for cognitive issues related to lyme. That is one of many antioxidants hubby took on the advice of a neurologist and also his herbalist/nutritionist.
Not everyone recovers or regains their health. But most people do at least see some improvement in symptoms.
Before his last 2 tickbites hubby was the best he had been in the 12 years since he got sick. He was off all meds for 2 months after 3 years of continuous antibiotics and herbs. For him the treatment that was most effective was very high dose meds to treat the 3 primary infections all at the same time -- babesia, bartonella and lyme.
Treating just 1 or 2 infections at a time never really worked for Steve. It took a lot of trial and error to find combos that were helpful and when something helped we just kept increasing the doseages on those meds until he plateued and then we added in something new.
It was 10 years before the parkinsonian tremors and dystonia and seizure-like episodes went away. But they were pretty much absent for 1 1/2 years before the 2 new tickbites which may have given Steve some new infections -- probably will never really know for sure.
I suggest you either add more details here or start a new post and give more specifics and maybe others can suggest some testing or supplements that might be helpful.
Don't give up. There is always hope. Compared to when hubby first got sick 12 years ago there is much more testing available and many more treatment options.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Went back and read a couple of your posts. Has your son had the antibodies for babesia duncani retested? Have they come down any?
The meds you have listed for babs treatment were not really very high doses. That may be why you are not seeing more response.
I do know from hubby that babesia and/or other blood-borne parasites can cause very severe neuro and cognitive and psych issues.
Has your son ever had a brain SPECT scan? That is something I would highly recommend to see if he needs to go back on IV meds. Personally I would not rely on the new Advanced Labs test to stop lyme treatment. If the test is positive great -- but I have heard about too many cases that seem to get false negative results.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
I don't mean to pick on seekhelp, but as far as I know he has never had IV antibiotics. Also I do not know if his titer to babesia duncani ever came down into negative range. Those 2 factors could at least partially explain why he has never felt better with treatment.
If treatment is not sufficient to significantly reduce the pathogen load then a person may not see much if any obvious improvement in symptoms.
My husband definitely undertreated for many years so I do know that for him at least the dose of meds made a tremendous difference and also the length of treatment.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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I know that we have been PMing recently, but wanted to respond "publicly" here too.
As you know, I'm in the same boat as your son...and, yes, it totally SUCKS! It's beyond frustrating and some days it's REALLY difficult to go on and keep fighting! But I have three children...the youngest being 8, who was only 4 when this all hit. My kids have witnessed some pretty horrendous things with their mom with this illness, believe me! They used to cheer their mom on while she was running triathlons, but they've now been relegated to watching seizures, heart stoppages, running to the ER and changing IV bags! It just sucks for not only me living it, but them having to watch it every single day! But, I keep telling myself that I have to keep fighting and trying new things and that these things are organisms that CAN be killed! They are just VERY stealth, deceptive, complex and resilient ones! And I'm all neuro too...it's the absolute worst! Like living in a horror movie, that never seems to end!
But, I keep telling myself that this is just a blip in time that, unfortunately, we will lose forever, but that once we see improvement that we can and will get our lives back! We just have to keep the hope, no matter how difficult! To me, this is like the AIDS of fifty years ago...people got really sick, died from it and they really didn't know too much about it nor how to effectively treat it! Unfortunately we are all part of the same type of science fair project with Lyme!
Hang in there! BIG HUGS to you and your son! He will beat this!
PM me whenever you want/need to!
~tri
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Frikfrak, Yes I am still sick, if not worse and as of now only taking a few supplements and just started back on the oral abx. Treated for about 3 years and no lasting improvement..
My LLMD was in NC and they do not do IV's and my body couldn't handle all the orals. So I feel I have never been treated properly..
I had a good GP tell me once lyme becomes chronic not much you can do.. Thru Igenex I only have one IGG positive which is 23 and he says that is a hard one to treat.. I really feel depressed and discouraged.. In fact the LLMD told me I should only expect a 40% improvement , hey I would take it.. Please keep me posted about your son.
Posts: 1058 | From VA | Registered: Oct 2010
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Sorry, I didn't mean to upset anyone. Again, was just venting.
I have given LLMDs a chance.
Granted, I did leave the 1st one too soon, after 6 months, but back then when he became sick I didn't realize what I was dealing with and I, myself, bacame a mess.
Stayed with the 2nd LLMD 1 year 3 months. Was on IV Doxy for 9 of those months.
3rd LLMD, after only 4 months with no improvement, suggested we take him off all meds and put him in a contained enviroment to watch him because he felt "something else must be going on".
Now with 4th LLMD, no intention of leaving, I realize this is and will be a very slow process.
Also within these LLMDs I have taken my son to numerous specialists, hospitals, had 3 MRIs, yes, a brain spec, EEGs, psych evals., you name it. Tested for metals, parasites, allergies..I could go on.
He has taken various meds thruout...Omnicef, Biaxin, Flagyl, Tindamax, Minocycline, Doxy, IV Doxy (sp), Monodox, Bactrim, Plaquenil (sp?), Valtrex, IM Bicillin shots, IV Rocephin, Mepron, Malarone, and others I can't think of right now. Also numerous psych meds.
His numbers have come down on the babesia levels.
I, of course, will continue with treatment for as long as it takes.
triathletelymie: I can't thank you enough for our emails, they truly do help.
I think its just the holidays, I always get alittle down and this year my only other son is serving a tour in Afghanistan...so that certainly doesn't help me relax... LOL
Well thank you all, and again, I didn't mean to upset anyone.
I will post if any progress.
I pray for all who are sick His Mom
Posts: 158 | From NJ | Registered: Jul 2010
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posted
My family has been dealing with Lyme etc. for 11 years now. One out of three is better. The other two of us have high autoimmune testing and the HLA-DR4 genetic allele, which supposedly means a tendency to autoimmunity with Lyme and also "intractable" disease.
Honestly, we feel better off meds than on and try to deal with symptoms in other ways, whether traditional or alternative.
At various points, my LLMD tried to hit my symptoms harder with meds and I actually got much sicker.
Acceptance of whatever residual limitations I have, whether from infection or from treatment, has helped me move forward, but when it comes to my kid, that is much harder to do. So I understand how hard this is.
Posts: 108 | From US | Registered: Apr 2012
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Maya12
Frequent Contributor (1K+ posts)
Member # 36392
posted
Hey , just wondering if you ever tested your son for kpu?
According to dr. K this is a big one in autism cases, also what sort of heavy metal test did he do, hair analysis or urine challenge?
My hair analysis was fine but urine challenge showed murcery , lead and barium
Posts: 1632 | From Canada | Registered: Feb 2012
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I was not upset in my posts -- was actually trying to be encouraging.
Not sure if you are aware or not, but my hubby died on October 9, 2012 from ARDS (lung failure) a very rare complication of babesia. As you can imagine it was and still is very upsetting because the hospital docs stopped his babesia meds and in the end the only thing that came back positive as a possible cause of the ARDS are the 2 outside labs (CLongen and Fry) which both found blood borne parasites.They also found an as yet unidentified bacteria that the hospital did not find -- tests still pending.
I do not see any meds listed which are specific for bartonella. Has your son ever taken cipro, levaquin, factive or rifampin? The rifampin especially is supposed to work on bart, babs and lyme -- but that med does not combine well with others so may not have been tried. Also doxy plus rifampin is used for resistant cases of RMSF.
Unfortunately the psych meds do not work in all tickborne patients. Hubby just had more side effects from those and we stopped them many years ago. He did much better on nutritional supplements such as SAM-e.
If your son has not taken herbs then I would seriously consider consulting an herbalist. Adding herbs into your med treatment could be helpful. Not just as killing agents, but as support and symptom control as well.
I can understand your frustration with slow treatment as it took us 3 years for hubby to even get diagnosed while he just got sicker and sicker.
Good luck.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
If your not getting well on abx after yrs of tx, it would be VERY prudent to try antiparasitics.
Parasites/worms are now considered the number one co-infection of Lyme disease. Antiparasitic herbs and salt/c saved my life and put me on the road to recovery.
There have been plenty of posts on parasites lately and it would be a real shame if those chronically ill with Lyme dsidsn't pay attention to this. Check out www.lymephotos.com This is what came out of me when I started going after parasites.
Filarial Worms have been found in over 40% of the ticks being dissected by Dr. Eva Sapi, and Willy Burgdorfer found them in the original ticks he dissected. Google parasite 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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posted
I hope you don't feel like you have to apologize for venting frikfrak. Sheesh, this disease is a nightmare, who wouldn't need to vent? I view this board as an avenue to do so. Also, the situation you describe is your reality, not easy. Of course, watching your kid is much harder than if it was yourself.
I was dx'd in 2008, after 2 years of all neuro illness symptoms, which began in 2006. I've done 2.5 years of high-dose, multiple oral abx, anti-parasitics, then onto 11 months of multiple IV abx.
I am still sick, dealing with a plethora of neuro symptoms daily. Let's see....3-4 LLMD's later. Seeing a different, integrative doc this next week. Currently, I am doing very little, a few detox drops, that's about it. It's very frustrating. Hope you guys can find what works.
I too don't mean to be a downer, but this is my reality. I have a lot to be thankful for as I can still get out of the house. I am just neurologically impaired in many, weird ways. TS
Posts: 566 | From West Coast | Registered: May 2008
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One test you might want to consider is the functional detox test from Genova Diagnostics lab. That is a prety cheap test -- used to cost around $110 I think. It measures how well the different liver detox pathways are working and also reports the level of lipid peroxides which is an indirect meausre of the amount of brain inflammation and level of antioxidants in the blood.
The test requires a person to take 3 substances orally -- I think if I remember correctly they are aspirin, caffeine pills and tylenol. You have to do a stool, blood and urine collection all. The test will give you specific suggestions on supplements to take to correct any abnormal findings. This test can be abnormal even if you do not have genetic detox issues. It is a functional test. Not sure if New York docs can order the test though.
The lab used to give out names of docs who used their lab -- not sure if they still do that or not. If not, then many chiropractors use the lab. Also most docs who belong to ACAM.
Maya12
Frequent Contributor (1K+ posts)
Member # 36392
posted
Hey frik you can get the kpu test through vitamin diagnostics , please also google kpu a missing piece to the puzzle
Also I tested for metals in the blood as well and had nothing, they will only show in blood if it is a recent exposure, the urine challenge is where you take a chelator of sorts , ex dmps and then collect urine and they test it , this is a post test
Taking the chelator helps pull some metals out into the urine.
Posts: 1632 | From Canada | Registered: Feb 2012
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Maya12
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Member # 36392
posted
And yes an llnd is naturopathic, hope this helps
Posts: 1632 | From Canada | Registered: Feb 2012
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posted
How are you tested for parasites? I have been sick over 8 years and still not well.
My doctor did stool testing years ago through metamedrix? I think was the name and it indicated there were no parasites present. Is there another test I should have?
Maybe that is the missing piece to my puzzle... Thanks
Posts: 343 | From North Carolina | Registered: Oct 2008
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
As many here can tell you, parasite testing is VERY unreliable. I tested negative for yrs and I was LOADED with parasites. If you're not getting well after 8 yrs, it most probably is the missing link.
I would go straight to an herbal antiparasitic such as Humaworm or Parastroy and maybe salt/c to see if you herx. One mos is NEVER enough on antiparasitics.
It took me 6 mos of doing LOTS of herbs and then salt/c b roke the infection and everything on Lymephotos came out of me. Google parasite symptoms.
I have come to believe that parasites are the major infection we are fighting and abx alone will not eradicate them.
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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sparkle7
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posted
This is a very complicated illness. There are so many co-factors it's hard to tell what to treat.
Does anyone know if there is any proof about bands being IND or slightly positive being totally positive for Lyme? Can other things cause slightly positive readings?
I just have my doubts about the testing in general. Some people say it means positive & other negative - who really knows? The people who say it means positive have a vested interest since they make money from giving people treatments.
I never improved on abx & I took them for 9 months. After that, I didn't want to wreck my intestinal tract which was starting to happen. A large part of immunity is located there.
I seem to recall that there are more people I know who posted here who got worse or no better from taking the drugs. I don't mean to be a downer but just my observation.
It's hard to know when to bet the fam on some treatment, go broke & still be ill. We just don't know statistically what works & what doesn't.
My attitude is to try not to do alot of damage & try to take things that will help me cope as best as I can - meanwhile, investigate things that may help.
I was ill with CFS when I was in my 20s & got ill again at 36. I did manage to get better for some time but became ill again. I don't know if it's genetic, toxin related or pathogen related. I'm 51 now... It's a long time to be ill.
I don't have children, though. It must be heartbreaking to see them go through this. Best of luck to everyone! We just have to keep trying as best as we can.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
sparkle, regarding your questions about IND bands (indeterminate, or slightly positive for lyme), I think the explanation of the Western Blot test at the top of Medical Questions is a good one. Here is what it says about these bands that show up as slightly positive:
"Western blots look for antibodies. These antibodies are made by your immune system. In this case, the antibodies are made to fight against different parts of the Lyme bacteria, which is called Borrelia burgdorferi, and other Borrelia species.
In other words, your immune system does not make one big antibody against the whole bacteria. So, when you see a number on a borreliosis Western blot, it corresponds to a specific part of the bacteria.
Compare it to the old story of different blind people touching an elephant. Based on the part of the elephant each one touched, each person had their own perception. Likewise, the antibodies attach to different and specific parts of Borrelia burgdorferi.
Numbers on Western blots correspond to weights. Kilodaltons (kDa) are the units used for these microscopic weights. Think of it like pounds or ounces. An 18 kDa antibody weighs 18 kilodaltons.
To do a Western blot, thin gel strips are impregnated with the various parts of Borrelia burgdorferi. Each of the numbers, 18 through 93, on the test result form, is a part of the bacteria.
Blood is made up of red blood cells and serum; Spinning blood in a centrifuge separates serum from red blood cells and other things, like white blood cells and platelets.
Serum contains antibodies made by the immune system. Electricity is used to push the serum through the thin gel strips for the Western blot.
If there are any antibodies against parts of Borrelia burgdorferi present in your serum, and these parts are impregnated on the strip, the antibody will complex (bind) to that part.
When antibodies form a complex, it is called an antigen-antibody complex. Anything foreign in the body is an antigen, such as a ragweed pollen particle, germ, cancer, and even a splinter.
In the case of borreliosis, the various parts of Borrelia burgdorferi are all antigens. Though each antigen is different, they all come from the same bacteria. So all the numbers that are positive on the test report are due to antigen-antibody complexes.
If enough of the complexes are formed, eventually it may be seen with the naked eye as a dark band. - Band intensity reflects how dark or wide it is. Controversy exists about band intensity.
Many would say the " +/-" equivocal ["IND"] bands are not significant. The problem I have with that, is that there are "-" negative bands. The lab has no trouble calling some bands negative. So they must be seeing something when they put "+/-" at some bands.
The only thing that makes sense, is that there is a little bit of that antibody present in your serum. If the "+/-" equivocal is reported on the borrelia associated bands, it is usually significant, in my clinical experience. This is a strong clue that I am on the right track.
Instead of ignoring these, they should be a red flag to keep pursuing a laboratory diagnosis. Giving patients 4 weeks of antibiotics (usually tetracycline, 500 mg, 3 times a day), will convert a negative or equivocal Western blot to positive in about 36% of cases.
As mentioned, if these positive blots are found by specialty labs, over 99% of those patients will respond to antibiotics." (end of quote)
"If there are any antibodies against parts of Borrelia burgdorferi present in your serum, and these parts are impregnated on the strip, the antibody will complex (bind) to that part."
I am sure you could get any medical lab technician to confirm that this is how the Western Blot is done. So, you don't have to worry about the lyme doctor lying about that.
The only issue is how to interpret the IND bands. As the quote above says, the lab will say "negative" if no antibodies bind to a band. So, to say "IND" means that it was NOT negative, and it was NOT positive. It was in between.
Based on how the Western Blot is done, that means that you had a few antibodies binding to the gel in the test strip, but just not enough to be considered a positive.
There is nothing else that will bind to the test strip, just antibodies.
I understand that some other illnesses (like syphilus) will cause the immune system to produce antibodies that are the same weight as some of the weights on the test strip. The test results generally name those other illnesses so that you know what they are. However, if you had these other illnesses, you would know it.
So, it seems pretty clear to me that there are no other explanations for IND bands except that the person has produced a few antibodies that corrrespond to a part of a lyme antigen (germ) and bind to a part of that lyme germ.
There are a number of germs that will cause a positive on band 41. Band 41 is the "tail" or flagella of the lyme germ. Many other germs have tails that allow them to move or swim around, so you can't bet the farm on a positive band 41.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
I am so sorry for everything you and your precious son are going through. I have two sons myself who are in elementary school- and they may have congenital Lyme or possibly been bit by a tick- we aren't sure.
I am in my 40's and was diagnosed late with Lyme. I know how discouraged I feel, so my heart goes out to you because as an incredible mother you are doing everything you can for your son.
And it is exhausting for even healthy people to put time and energy into researching, reading, talking, visiting many doctors, running errands, and so on. But having to do all those things with the concern and diligence to find what will, what all different combination of things will help your son.
I know for me that I have personalized and tried various things on my own. Initially, I started with 200mg of Doxy twice a day, had some major herxing after about the 5th week, continued on Doxy for a few weeks more.
I then, after reading more about it from my LLMD's office thought I would try the Premier HCL and Premier HCL Activator. My doctor and a few other doctors have reported at a conference that it has truly helped many of their patients.
So I figured, I would give it a try after reading more info on it on the Internet from various websites. I started with one HCL and one Activator and worked my way up to now 15 Premier HCLs and 3 Activators, three times a day after meals.
It has certainly helped with the digestion part and I do feel improvement in other areas. I am in my third week, so I'll see how it goes. But I am also taking Nattokinase (4 -6 capsules) on an empty stomach because I have Hypercoagulation and it helps thin my blood out.
In addition I am also taking in a gel capsule form oregano, thyme, clove oil- started with one and am now up to one - three times a day.
Recently I was hit with strep throat and a nasty sinus infection, so I am on Ceftin to clear it up.
But I wanted to share with you that as I have read on the forum, learned from my doctor, that many different things can work for different people.
I forgot to say that I do take 1 tsp. of a healthy non-refined salt with lots of water, and just 5,000 mg of Vit C. I do this because I wanted to make my body Alkaline and I also want to kill anything...bacteria, parasites, viruses, etc. I will stay on this dose until I see what happens with my HCL.
I have learned that it does make a SIGNIFICANT difference who you buy your HCL from- and I buy mine from Premier Reasearch Labs.
Everything I have done so far I did one at a time, waited for 4 or 5 days (sometimes less), before I added something new. My doctor recommended that approach because if I had a bad reaction to something, it is much easier to figure it out when you add things one at a time and space them out a bit.
I would highly encourage you to seek an LLND, or another LLMD who may have some helpful info to add to what you are doing. And I believe you said your son tested neg at first to Babesia but then later was positive-
With how unreliable tests are anyway, I would personally go after those parasites, in addition to getting the other toxins out of your son. I have found from personal experience that nutritional supplements do help and I was deficient in quite a few.
I can hear in your post how concerned you are and understandably so. I want to encourage you to keep asking questions, ask for help, leave no stone unturned. I am definitely not a doctor, but I personally feel if your son has such severe symptoms, then he needs to be seen by a
Professional experienced Lyme Literate who can treat him effectively and efficiently. And you have been seeing doctors to do just that- but I feel he or she may be missing something, IDK, may need to use a different abx, herb, something.
There may be a Mom or Dad on this forum whose child was in a similar situation as yours who you can connect with. I will be praying for you and your son, and that you can get answers you need quickly and that he can start healing soon!
Posts: 167 | From Southeast Tennessee/Chattanooga/Atlanta | Registered: Oct 2012
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posted
Oh I completely forgot to tell you something EXTREMELY IMPORTANT.
Just last week, my son's Lego piece fell off and we couldn't find it on his floor. I thought may have fell in one of the floor vents that our heat comes out of.
I took off the register, shined my light in the duct work and saw..MOLD! I quickly went to every register and they ALL had mold.
We had a new HVAC system put in 5 years ago, and I remember cleaning dust, dirt, and debris from it a couple years ago, but there wasn't any mold.
Our kitchen sink has had a couple leaky pipes off and on- mold. So, now we are in the process of hiring a certified mold specialist to test our air, crawl space, attic- and also check for any other toxic things that could be in our air.
Now my husband, myself, two young sons are being treated for chronic mold infections. We never would have known if I didn't see the mold in the air ducts. Our docotr's don't ever consider mold, at least around here to be a possible health problem, but it was making all of us extremely sick. ( on top of my Lyme).
Just something else that you may want looked at. If you smell anything musty, or if something feels damp, there could be a leak from the roof or plumbing behind the walls, in floors, attics, etc.
I hope you don't, but I did want to share our recent experience with you. We would have stayed sick and not known why.
Posts: 167 | From Southeast Tennessee/Chattanooga/Atlanta | Registered: Oct 2012
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Thanks TF. I just wonder about this... Many of my tests are on the boarder like this. So, it's kind of hard to commit to any kind of treatment. Especially, something like massive amounts of abx.
I tried them for 9 months with no improvement & not much herxing. Mostly just side effects...
I also wonder how accurate the Western Blot is. I will look into it further. If anyone knows off the top of their head - please post. I have been bitten by mosquitoes & I do have some dental problems... There may be some spirochetes in my gums which are not Borrelia burgdorferi... or other unknown pathogens...?
I'm just suspicious of any doctor who suggests massive amounts of abx with little or no testing (which is what my doctor recommended). I suppose I could go back to the beginning & start over but I don't have the money for it.
I don't mean to sidetrack this thread - it's just so complicated since many other things could be the "real" issue... mercury, heavy metals, other toxins, mold, allergies, viruses, undiscovered pathogens - What ever became of XMRV?
I guess it made me pretty disguested when I actually saw parasites exiting my body & my doctor had no clue what to say or recommend - yet, he wanted me to take Mepron with no test saying I was positive for babesia. I don't have any major symptoms for babesia but I saw the parasites.
So, yes - parasite treatment is a major factor in my opinion.
Yeah, if I had another $10,000 to blow, I could find yet another opinion... I know people who have spent alot more & are still ill, too. So - some people get lucky & others have to find other ways to survive until they find out what the problem is.
We just have to keep searching.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Just thought I'd post this since I found it in my research...
Further complicating matters is the fact that antibody tests can confuse Lyme antibodies with antibodies created by other complications in the body, including antibodies created in reaction to bacteria other than the Bb organism.
This means the majority of the results of the ELISA and Western Blot tests are not completely accurate. It also means that it is common to receive false positive and false negative results when using the ELISA or Western Blot tests.
In other words, a negative test result cannot guarantee that Lyme antibodies do not exist. Conversely, a positive test result cannot guarantee that a patient actually has Lyme antibodies in his/her system.
In both cases, accurate positive antibody test results does not mean that a patient has active Lyme bacteria in their system.
they say really you only need band 18 or 41 to prove lyme. It used to be band 41, now they are saying 18. Of course, if any of your bands say IND (indeterminate) any LLMD says that means positive, as "they" saw something. but in 41 or 18 they actually saw the flagella. Here is a breakdown of all bands:
Igenex Western Blot Break Down by band 9 cross-reactive for Borrellia 12 specific for Bb 18 highly specific to Lyme (Many LLMD's say if this band alone is positive, you have lyme - see link above) 20 cross-reactive for Borrellia 21 unknown 22 specific for Bb, probably really the 23/25 band 23-25 outer surface protein C (OspC), specific for Bb 28 unknown 30 unknown; probably an outer surface protein; common in European and one California strain - Has cross-reactivity with several different types of viruses 31 outer surface protein A (OspA), specific for Bb - Has cross-reactivity with several different types of viruses 34 outer surface protein B (Osp; specific for Bb 35 specific for Bb 37 specific for Bb 38 cross-reactive for Bb 39 is a major protein of Bb flagellin; specific for Bb 41 flagellin protein of all spirochetes; this is usually the first to appear after a spirochete infection but is NOT specific to Lyme (i.e, other spirochete diseases have flagellas - see link above "Western Blot Made Easy" for more info) 45 cross-reactive for all Borellia 50 cross-reactive for all Borrellia 55 cross-reactive for all Borrellia 57 cross-reactive for all Borrellia 58 unknown but may be a heat-shock Bb protein 60 cross reactive for all Borrellia 66 cross-reactive for all Borrelia, common in all bacteria 83 specific antigen for the Lyme bacterium, probably a cytoplasmic membrane 93 unknown, probably the same protein in band 83, just migrates differently in some patients[/b]
An IgM positive test result means more recent & likely currently active infection. IgG positive means previous exposure to the bacteria or older infection of Lyme. If no symptoms are present with IgG positive, it may mean an "inactive" LD infection. No matter the results, please remember LD is a clinical diagnosis, you can have a negative test and still have Lyme Disease and the co-infections, even through the best labs. If you have symptoms, you need treatment.
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I don't know if this helps or makes you more confused... I hope it helps.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
Wow, let me just say I didn't realize what a response I would get.
thank you all so much for your input.
Just to recap, my son was diagnosed 3 years ago with all bands positive plus RMSF, negative for all other coinfections.
Treated for this for 2 years then in 2012 Babesia came up positive. Very high number.
So been treating that ever since. His lyme tests now come back as inactive Lyme but his LLMD thinks he still may have it.
I do believe our LLMD is doing his very best, but for whatever reason my son is not responding, at least not yet. We've only been with this LLMD for a short time.
He continually got worse thuout the years and the way he is now is the way he's been for awhile, almost plateued.
My son is extremely wonderful, very easy to handle, very polite and easy. I am truly blessed, it could be much, much worse.
I will treat and take care of my son forever, I'm just hoping he gets better because before he got sick he was very independent and prideful.
Wanted to do all on his own. I know he's in there somewhere, he just can't express/talk to us right now.
I will keep everyone posted and when he starts getting better I will post and let you know how.
thank you all for your posts and good wishes His Mom
Posts: 158 | From NJ | Registered: Jul 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
sparkle, it sounds like you really didn't like your one lyme doctor's approach. When there is a mismatch like that, the best thing to do is to move on. Find out everything you can about the next doctor, and if he sounds like he approaches things the way you like, then find out even more.
Regarding your quotes about the Western Blot, the source is all important.
When you quote a poster on a lyme forum, that is just another person like any one of us. When you quote a lyme doctor, it depends on his reputation whether or not we give great weight to what he says.
We know that no lyme test is 100% accurate as of the present time. So, you just have to give up wanting such a test right now.
But, still, I can see folks with iffy tests wanting some other proof or indication that the diagnosis of lyme is actually most likely accurate. How I reacted to treatment was my proof (plus a positive test from LabCorp). Too bad you couldn't get a clear indication from the 9 months of treatment you did.
I hope you pursue parasite treatment. It would be wonderful if this restored you to health.
Posts: 9931 | From Maryland | Registered: Dec 2007
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tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
I am sorry to hear of your struggle. All three of my young children were very sick with lyme at one time. We tried 2 years of abx with Dr. J, which helped some but did not heal them.
What helped was switching to an herbal protcol. I wonder if any of those who have not gotten better have tried an herbal protocol for an extended period of time? I never thought it would work better than abx but it did for my family. I would recommend the Klinghardt lyme cocktail or the Cowden protcol. Other options are rife and salt/C. I wish I had gone the natural route the first time around with my family.
Another important step is getting energetic testing either through EDS testing or muscle testing. This way you can see which infections you are dealing with and what will get rid of them.
We went to the 5 of the top LLMD and they could not really help us. The blood testing is inaccurate...you have to figure that these days, when you have lyme, you probably have every coinfection as well. You need to treat them all at once to get ahead. You can do this with herbal protocols.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Hi TF - I know you mean well...
re: When there is a mismatch like that, the best thing to do is to move on.
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Yes, but how much money can one spend on all of these varying opinions? These treatments are based on "opinion"... One side says that any IND or + definitively equals Lyme. The other side states only specific number bands equals Lyme.
Do we have any definitive proof one way or the other? I've seen alot of Lyme treatment failures. How much do we spend? For some, the drugs work & for others they don't. I base my opinion on what I have seen here & on other message boards.
I have followed people who go to the best LLMDs in the country. We just don't know even though some famous doctors assert that their concept of Lyme is correct. Yet, they will bankrupt many people.
Many people with Lyme & the co-infections still remain ill. Some people get well & others don't no matter who they go to see or how highly respected they are - on the IDSA side or on the ILADS side. Do we keep taking risks & spending loads of cash?
IgenX states on their website - "presence of antibodies alone does not make a diagnosis of disease."
Yes, it may be a good idea to aggressively treat someone who only has a slight indication of Lyme but each case is different. I've seen people remain ill after "betting the farm" on well respected LLMDs. The abx can have their toll or the immune system & the gut. People can still have stealth pathogens in their body despite numerous treatments with abx.
We always have to keep hope alive & keep trying - but how much is enough enough? When do we stop listening, researching & looking for some new opinion? When we are bankrupt?
Then what?
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I just wanted to post this for people's info. Someone who used to post here posted it on another message board -
note (excerpt) - "These spirochetes are microscopically indistinguishable from syphilis or lyme disease spirochetes."
Dentists have treated spirochetes living in the sulcus as a local phenomena. Why?
If one thinks of T. palladum as the exemplar of the species one begins to understand why we have an epidemic of diabetes, heart disease and alzheimers.
This patient brushed her teeth three times a day with tooth paste. Clearly a failed endeavor.
These spirochetes are microscopically indistinguishable from syphilis or lyme disease spirochetes.
Oral spirochetes have been found in the brains of alzheimer's patients.
We believe that oral spirochetes are the primary injurious agent in two other chronic diseases that plague man, heart disease and diabetes.
These things breed by the trillions in the gingival sulcus and invade into the body by millions moving via the de-epitheliazed gingival sulcus into the blood stream then into cells found along the blood stream.
Primarily the endothelial cells lining blood vessels, and the Islets of langerhans cells in the pancreas..
We have not seen anyone with heart disease or diabetes who are not infected with oral spirochetes.
Recent papers have proven the alzeheimers plaques are created by these spirochetes which breed in the crevice between the tooth and the gum and under plaque bacteria.
The use of tooth cleaning agents will not remove these spirochetes.
The only effective methods we have found is Dakins solution.
Vigorous rinses for at least two minutes with Dakins or Dakins in a WaterPic�.
The use of the Dakins which is a 20:1 dilution of clorox bleach is by far the most effective technique for killing spirochetes in between the teeth as well as the more accessible areas.
Tooth pastes are good for cleaning teeth! But this is a different problem entirely.
Spirochetes form spores which require daily disinfection of the crevice between the tooth and gum.
The only thing which will dissolve plaque(the vegetative bacteria which cause tooth decay) off a tooth surface without friction is clorox diluted in water at a 20:1 water/clorox ratio.
This material is cheap effective and absolutely works but no one can sell it to you for a high price, so not one cent of marketing money will be spent to educate the public! This is tragic in the extreme.
We have research grade microscopes to show the spirochetes.
The only effective techniques involve using bactericidal materials such as clorox and high concentrations of baking soda...
Other things such as hydrogen peroxide, povidone iodine, chlorhexidiene, and table salt have drawbacks in daily use.
Tooth pastes are valuable in stopping and treating tooth decay, but flossing and brushing with tooth paste or oral rinses with items such as OTC mouth washes, will not guarantee a kill, and in comparison to clorox are very expensive over a lifetime. Patients wonder if clorox is toxic.
While it tastes terrible, it is harmless when diluted to 0.3 percent, that is a 20:1 dilution of 6% clorox.
Clorox turns into table salt in the stomach if swallowed. There will be some initial stinging of the skin in the mouth when first used!
That goes away when the skin heals after a few uses. Use at night before going to bed and do not rinse the mouth after. If irritation develops move to mornings.
Use at night when saliva flow shuts down will keep the material killing for a longer time when not rinsed out..
Finally, we have tried them all and brushing with copious amounts of baking soda forcing it into the gums and in between the teeth one time daily and then using a WaterPic� with the dilute clorox solution will give the best results. What are those results?
Absolutely no leakage of the seal where the tooth come out of the skin.
The Gum is a specialized tissue designed to seal the skeleton where it come out thru the skin. The teeth are the only part of the skeleton which is out side the skin... So it cannot heal itself.
Use of a good fluoride tooth paste at night will do much to stop tooth decay.
Never eating sugar or carbohydrates between meals will assure no tooth decay in those with normal saliva.
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