Hoosiers51
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Member # 15759
posted
Helping out UnexpectedIlls' posts I suppose.....
Basically, I just found out I had a positive Lyme IgM about 18 months ago (CDC overwhelmingly positive) while on high dose Amoxicllin.....but this positive IgM was also after extensive courses of Antibiotics in the past, including IV Doxy with Biaxin, also over a year of oral Doxy with Zithromax and/or Biaxin, and after babesia treatment with Mepron and Zithromax. I have also done Malarone/Cipro/Zithromax.
So basically, it still IS Lyme.....my IgM was lit up like a Christmas tree. But, there must be something keeping the Lyme safe after years of treatment. What ELSE is it?
I'm not going to say "Antibiotics don't work." I think they are part of the answer......but what am I missing? Some might say metals but I tested wayyyy lower for them than everyone else at the alternative clinic I got tested.
I'm not sure if it could be Mycoplasma because it seems like some of the antibiotics I have done extensively would have at least put a dent in it. Could all this be due to Bartonella? I did 4 months of Cipro/Zithromax/Malarone.......so that would mean Cipro didn't take care of it.
Next I'm doing Rifampin/Minocycline.
But seriously......WHAT is going on? Why is my Lyme as positive as ever? I had my food sensitivities taken care of, did lots of alternative treatments for my gut, etc. My hormones seem okay. Also, I am 99.999% sure my place doesn't have mold. It is a brand newer apartment complex, smells very fresh and clean, and I'm sensitive to smells so I would hope I'd notice.
Maybe biofilms are an issue? That and cysts, which my LLMD doesn't emphasize much. Those are the only two things I can think of that could be a problem.
I have had positive bloodwork for Lyme, Bartonella, and Babesia. But is there another "mystery illness" or "mystery problem" I am missing?
What more should I be doing?
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
Personally I think Bart could be a big issue for you.
I also do not think that Cipro or Levaquin will always kill bart/BLO. Neither worked for hubby -- helped but not enough.
I think you will know relatively quickly when you try Rifampin if Bart is the problem.
As for what else could be going on -- have you tested or treated for any viruses? I think the longer one is ill the higher the probability that viruses are also an issue.
I am keeping my fingers crossed that the Rifampin combo hubby is on will work, but if it doesn't then I do know of several herbs that definitely stir up the Bart.
After 45 days at 600 mg of Rifampin -- took hubby 4 or 5 months to get to this dose -- hubby had to drop back to 450 mg of Rifampin -- the brain inflammation just became too much.
Herbs which I feel work on Bart -- not sure they will do the job alone though -- HH from Zhang, Spiro Kete from Kroeger herbs (mainly monolaurin), the spice cardamom, and the herb stephania. I am sure there are more, but hubby has had definite reactions to all of those listed.
Another factor I don't know if you have addressed is hypercoagulation. Systemic enzymes such as Wobenzyme or Vitalzyme work well -- take on an empty stomach between meals.
This is not medical advice, just my opinion based on hubby's experiences.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
You said, "I'm not saying that abx doesn't work..."
Seems like you have a perfect case to make that statement.
You may not win a popularity contest by saying that abx doesn't work. But it sure sounds like it has not worked for you. And God should know you seem to have tried every possible type, combo and dosages for both Lyme and coinfections.
So what else could be going on?
I have sent you a PM.
Michael
-------------------- I'm not an MD. The above is IMO and in my experience as well as from health related books.
I've had symptoms consistent with neurological Lyme disease since 1986. Was diagnosed with Lyme in 2004. Am feeling better now than ever before. Posts: 702 | From NY | Registered: Jul 2004
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
<<<<< Hoosiers51 >>>>>,
Hello there,
I find myself asking the same sort of questions as you have and Unex'Ills too.
We didn't have a lot of testing done,jus' the Igenex Igg/Igm and basic blood work ANA etc. Just didn't have the finacing.
I was told even before the testing that it was Bart'/Lyme. I suspect now some Babesia problem as well.
At 17 I had to go to hospital for tests, it was ruled Neuralgia and probable -unknown virus-. I could not walk for awhile as my knees would pop,legs go rubbery, and I was grabbing onto walls or what have you.
I think these vector born illnesses latch on to us and feed,then weaken immunity so that any genetic issue possibilities,or whatever is traveling in air,water, and food can get a grip on us too.
Throw in heavy metals toxicity, mold,and mildew and you get the recipe for Us Lymers. We become the 'food at -the bug,bacteria,germs and viruses- Ugly Bugs Ball and Feast'.
I'm not sure how to beat this mess,but I think we should keep trying.
Once I stated, "I don't care if it's Minerals,Mud,Magnets or Miracles,that help I just want my health back...". And I'm stickin' to it!
It would be nice to know what good health feels like. I'm not sure I've ever really known,I was born w/ coordination issues,and had frequent ear infections growing up.
There was a link posted here somewhere[possibly in the newbie links helps?],about govt. experiments/our govt. and others. I often do the conspiracy theory tho'ts and wonder.Like about Plum Island and such.
What really is/has been going on for years and years??? We may not find out all of it??? But I'm a bit cynical I suppose,it is harder and harder for me to trust govt' leadership etc.
Uhm, maybe they are trying to create a 'Super Race' again??? If one survives all these weird messes happening to us,w/ some amount of brains intact, they'll use our gentics?!? ANd whoever doesn't survive is no skin off these Evile Sci-guys[gals] noses???
Well,hmmm, maybe thats too Sci-fi...oh dear,I grow more and more cynical. But it really makes me wonder too,just What Is Actually Going On????
Answers???, keep trying various meds/herbs supplements/bio-photons[? how do they say it?],what ever we can find and afford to try. It seems like what helps some folk,may not help another set of folk and etc. Some things seem to help many of us.
My Cynical Smart Alec side says 'We the Experiments' ,need to be experimenters and continue working on finding answers.
It is helpful to me,when I can read what various pople w/ Lyme and Co. have tried/are trying,and what is working not working for most.
Jus' my thot's and opining for what its worth!
Silverwolf Sorta Cynical Weary Warrior
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Jus' me again,slow typist here,no one had replied yet when I started.
I'm being general,sorry, you were prolly looking for much more spcific info'!!!
So many times I find that questions bring good info'!!!Mine or others!!!
Hopefully we can all find answers,sooner than later.
Jus' Silverwolf
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Thanks for the replies everyone!
Bea, What exactly do you recommend for the viruses? Now that you mention it, through muscle testing (and blood for that matter) I learned that they ARE an issue for me, I have just not done much to get rid of them.
I have the Desert Biologicals "Virus" homeopathic drops, but other than that, any suggestions?
I would like to look into monolaurin. I heard it dissolves biofilms?
Also, I am taking Wobenzyme...it does help me! Thank you for your suggestions and I hope things go well for your husband. I will keep you all posted on how the Rifampin works out for me.
cmichaelo,
I do believe antibiotics work somewhat because I have seen progress on them. They (and Mepron) have gotten me partially there. I wouldn't have gotten this far without them. It is just obvious they haven't "completely eradicated" everything.
I haven't checked my PM yet...about to! Thanks!
Posts: 4590 | From Midwest | Registered: Jun 2008
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Alv
Unregistered
posted
I would say -BIOFILM that BARTONELLA hides. We can not defit lyme if you do not kill bart and that is the tricky question ...
Been there and TRIED it all.Stil dealing with bart even though I am better.BART is still there.
I have been fighting it for 2 years .I tried everything.
Hopefully a cure will be found.All the people that have bart still are fighting.The ones that have just babesia and ehrlichia and lyme are in remission.
If you read Dr J S books ,bart susspresses the immune system.
Combo BART and LYME is very dangerous and hard to bit.
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I do believe antibiotics work somewhat because I have seen progress on them. They (and Mepron) have gotten me partially there. I wouldn't have gotten this far without them. It is just obvious they haven't "completely eradicated" everything.
I haven't checked my PM yet...about to! Thanks!
Your mailbox is full.
Abx and other drugs helped me part of the way too, but they could only do so much.
So in the end, yes, abx may be helpful to get someone over the hump. But after that, IMO, it's really rather wasteful and even dangerous to continue treatment, because abx is obviously not up to the task.
IMO, other orthorgonal means need to be used. Means that do not involve drugs.
Michael
-------------------- I'm not an MD. The above is IMO and in my experience as well as from health related books.
I've had symptoms consistent with neurological Lyme disease since 1986. Was diagnosed with Lyme in 2004. Am feeling better now than ever before. Posts: 702 | From NY | Registered: Jul 2004
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Thanks Alv....hopefully this Rifampin will help some with the Bart. I'm crossing my fingers that I will not have to re-treat babesia afterwards.
So sorry cmichaelo that my box was full....I just emptied a bunch of messages! Eek!
Posts: 4590 | From Midwest | Registered: Jun 2008
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Angelica
Unregistered
posted
My guess is Biofilms too. It is just the first guess coming off the top of my head nothing scientific.
Maybe buy and try a bottle of MucoStop or another type of Biofilm buster that appeals to you and see if you notice any kind of difference.
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Alv
Unregistered
posted
You are wellcome.
Rifampin will lower the load but is not a cure.I used it for 9 months.I have so many herbs that I test every day.Is amazing on how the body changes on what works on a day does not work on another day.
Do not be surprised that babesia can come up.It did to me after 15 months.So did EHRLICHIA while BART was all along there .
My best wishes to all of them out there WHOEVER they are scientist , just simple searchers for an answer, patients or doctors to find the KEY on treating this HORRIBLE disease.
The day will come and we will be back to NORMAL again.WHAT we have learned so far is way beyond my imagination .The answer is out there !!
Do not give up.
JUST sharing.I have an arsenal of EVERYTHING home.PEOPLE think is a PHARMACY.I know exactly what each one does does.
( I used to be a member of curezone.com 4 years in a row and have had tried all the best products before I knew I had LYME and company -never heard of it before).
I noticed that my body wants desperatly some oil drops that MY ND is muscle testing. So it is :Worm seeds oil , wintergreen oil , Basil oil, spearmnint oil , leptotaenia oil etc etc...
I have created on my own some empty capsules and I put 2 drops of all these oils and 2 drop of oregano oil .( by the way oregano oil that I have used even before I knew I had lyme tested the highest on muscle testing when I did the surgery to remove 12 mollars infected thanks to lyme and bart .
One of the doctors was a surgeon best holistic in NORTH America and second was a homepathic and used a biofeedback machine while cleaning my infected jaw).
By the way -enzymes have a great value.They really help you will hypercoagulation.If that is not the answer to biofilm that all the herbs that tested positive in my body were .
I had to swallow $3000 THE FIRST MONTH -WHEN i NEVER THOUGHT I would wake up alive.
So back to the point.I will collect all the oils and muscle test them and see which of them I really react that MY BODY needs and create a capluse ( empty one) and swallow it before I take any antibiotics or anything else.
This herbs keep coming up as very strong in fighting BART.MY LOAD of bart was unbeliveble.
I had BART for 30 years that I can recall at least myself.
quote:Originally posted by Hoosiers51: So basically, it still IS Lyme.....my IgM was lit up like a Christmas tree. But, there must be something keeping the Lyme safe after years of treatment. What ELSE is it?
Unfortunately, there are probably lots of possibilities, which makes it tough to figure out. The MP folks, for example, say blocking of the vitamin D receptor is a concern because it inhibits the immune system from eradicating Bb. Might be worth looking into.
Posts: 727 | From USA | Registered: Mar 2006
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Hoosiers51
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posted
So in other words, up Vitamin D intake? I just started taking D-3.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Tracy9
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Member # 7521
posted
It's because there is no cure for Lyme Disease.
Hence the book, "Cure Unknown." Simple as that.
It's not that you don't have Lyme, it's that we don't have a cure.
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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-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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quote:Originally posted by Hoosiers51: So in other words, up Vitamin D intake? I just started taking D-3.
Actually, the opposite: cut the D because it reduces immune system activity. This is why steroids are often given to organ transplant patients: to turn down their immune system's activity against the foreign organ. It's also why steroids are contraindicated in patients with chronic infections. D is a form of a steroid.
In my case, I didn't start getting well until I cut my D intake. It could be what's holding you back too. There's lots of discussion about vitamin D. Rather than take the word of anyone here, IMO it's best that you do the online research yourself, and come to your own conclusions.
Posts: 727 | From USA | Registered: Mar 2006
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posted
DGuy-- Are you on the MP?? I did the MP for 5 months and got extremely sick.... I think I am still recovering from it and stopped at the end of April 2008
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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quote:Originally posted by UnexpectedIlls: DGuy-- Are you on the MP?? I did the MP for 5 months and got extremely sick.... I think I am still recovering from it and stopped at the end of April 2008
Yes, 10 years of trying various things, and it's been the only treatment that has helped me. As we know from the variety of symptoms and treatments discussed here, with lyme, one size does not fit all. My blood test results and experiences were an excellent match for their candidate profile. I herx plenty, and like that I can self adjust abx dosing to what I can tolerate. Progress is slow, but it feels wonderful to finally be getting better.
Posts: 727 | From USA | Registered: Mar 2006
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groovy2
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Member # 6304
posted
Hi Hoosiers-
You list that you have taken some Babs meds- Im not clear on how long you have taken them but from what I read it sounds like 7 months-
If you have had Babs for any length of time 7 months of babs treatment is not going to be long enough -
Babs is a Very Tuff bug and Very hard to kill-
The ABX taken for Lyme have very little effect on Babs- its a different kind of organism --
For the best results both Lyme and Babs have to be treated at perty much the same time -
Most times LLMDs will treat one or the other first for a short time to get the Bug load down so that the herx from treating both does not make the person to sick at the beginning of treatment --
Then both of the bugs are treated at the Same Time from then on -
Babs is a very adaptive bug and will become resistant if treatment is started and stopped over and over-- So Dont Do that --
Babs HAS to be treated before you will see much progress in your health -(usually)
Hope this Helps--Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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Angelica
Unregistered
posted
Anyone treating with Mepron make sure the bottle is sealed with plastic at the top and says GSK on the plastic seal. Malaria drugs are counterfeited more than any other drug and Mepron is costly so make sure you are taking the real deal.
There was a thread before on this board about people thinking they were receiving watered down Mepron. I think some of what I received from one pharmacy was watered down. I have the feeling it was watered down before it made it to the pharmacy because I doubt my pharmacy would do that.
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lpkayak
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posted
did you use cyst busters?
did you pulse?
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Hoosiers51
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Member # 15759
posted
I took Mepron/Zith for 3 months 2 years ago.
Now am on it again. This time I'm 4 1/2 months in and LLMD wants to stop it because the immune markers he uses to gauge my level of infection (non-specific to any one bug) haven't moved while on Mepron.
I am thinking I'm gonna stop it. He is "certain" it's not helping me and fairly "certain" babesia isn't my problem. I have enough Mepron to get me through to the 6 month mark that is leftovers from 2 years ago......so that is as far as I could make it without his blessing.
......I am so confused.
I feel TERRIBLE on Mepron, and am not having any apparent "herxes"....just tired every day....it gives me very bad dark circles under my eyes and just non-stop fatigue, 4 1/2 months straight.
Is it fair to say taking it to the 7 month mark won't change things? I find it hard to believe things will change this far in, but I dunno.
Opinions?
Posts: 4590 | From Midwest | Registered: Jun 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
lpkayak-- no cyst busters, no pulsing.
Angelica-- this time around I can't remember if the plastic seals with GSK were on it. I think they were. I remember there were plastic seals, but they might have been clear. I think it came as a bottle, in the box, with a plastic seal, but the seal might not have said GSK.
Hmm, maybe i'll call the manufacturer and ask if their seals can ever be just plastic.
Posts: 4590 | From Midwest | Registered: Jun 2008
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