nefferdun
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Member # 20157
posted
I am relapsing in bartonella and borellia after a year of spending thousands and thousands of dollars on various cures. I feel resentful and angry that there are so many people marketing cures to desperate people that do not work. I am just venting a little anger here at what has happened to me from the six doctors that dismissed my symptoms even though I told every single one of them that I was bitten by a tick and had a strange rash and got sick directly after being bitten.
Then after diagnosing myself (Feb 2008) and downloading the information proving the diagnosis, went to another doctor that was happy to give me whatever I wanted as long as he didn't have to do any research on his own. So I was self treating. When I stopped the abx I continued to treat with herbs, which failed.
After an expensive round with a homeopathic doctor whose only reference was a book I also have, I traveled 1000 miles to the nearest LLMD. My physical exam consisted of feeling behind my ears for swollen lymph nodes (found none) and tapping my knees for reflexes which were fine. Looking at my responses to a questionaire, sent to me via email, I was diagnosed as having both borellia and bartonella. I went home with a prescription for levaquin and amoxy. I contacted the doctor about muscle pain I was having, had to pay $100 for his response which was to keep taking the levaquin. My tendon snapped in my rotator cuff and I was miserable for 8 months. He had never told me to load up on magnesium or to be extra careful as I am over the age of 60. His notes sent to me were so quickly put together they were full of misspellings and and sometimes made little sense. Obviously no time to proof read. The $600 in tests he told me to take were never sent to him by the hospital and he did not bother to ask for them.
I could not tolerate any abx he gave me (too many side effects) and it cost $100 to tell him each round. I have a thousand dollars worth of drugs in the closet. He would not prescribe me a herbal protocol, saying I would have to make another 1000 mile trip to see his homeopathic partner
Back to self treatment. It is ok by the way to prescribe patients you have not seen herbs by telephone. So I took the same thing which cost me 5-6 hundred dollars a month. After 5 months I began to get symptoms pretty bad again but the manufacturer of the herbs assured me I was herxing so I continued until I was firmly in the grip of the disease again.
So I am now on another group of abx, the ones in my closet that I could not tolerate last year but so far now am doing ok on. But it feels this time like everything is so resistant, it is not doing anything.
Hince my bartonella irritation, anxiety and depression is rearing it's ugly head,. . . . and my post. Perhaps this is a good thing. Perhaps it is emotional herxing. I will visit my happy to prescribe whatever you want doctor soon to get my liver tested and a refill. He told me he would give me a marajuana prescription if I wanted. I was insulted. Don't you get that no one takes abx for a high? Good grief.
Someone recommended the name of a "healer" and although that is way beyond my belief system, I am going to try her next. It will be a quick $500 down the drain.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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TF
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Member # 14183
posted
I think this is a good post for new people on what not to do. I hope that you are willing to answer private messages about who these doctors are and the author of the book you mention. This way, you can help many people avoid the mistakes you made.
I had undiagnosed lyme disease, babesiosis, and bartonella for 10 years. Now, it is 4 1/2 years since I completed my lyme disease treatment and I am symptom-free, enjoying my life--the same life I had before lyme disease.
I and many of my friends and acquaintances got rid of this disease by going to a doctor who follows the Joseph Burrascano lyme treatment guidelines.
Burrascano is considered the lyme guru of the U.S. and of the world. He has written these guidelines so that any doctor can read and follow them and, thus, learn how to successfully treat lyme disease.
Burrascano makes no money off of publishing these guidelines. He updates them every few years to add to them what has been learned. Again, he makes no money on this. The document is on the Internet for anyone to read and download. Burrascano also offered to train any doctor who wanted to shadow him while he treated lyme patients. I know a doc who did just that.
So, to offset what you have experienced, we have a man like Burrascano. People have come to him from all over the world. Many people have gotten rid of their disease by going to him. Now he no longer practices, but he is traveling around the U.S. and the world teaching doctors how to treat lyme disease.
Since I and my friends got well using his protocol, I highly recommend it to everyone. I tell everyone to call a lyme doc's office and ask if he follows Burrascano. If he doesn't, don't make an appt with him. And, if they say he does, then compare his treatment to Burrascano's and if it doesn't line up, move on. Many docs SAY they follow Burrascano but they really don't.
Call your local lyme support groups and ask for a Burrascano doc.
The Burrascano protocol is basically a high dose combination antibiotic therapy. It also includes supplements, herbs, probiotics, and mandatory exercise. He also recommends testing for all coinfections. In his talks, he recommends Igenex as the lab to use for these tests. In his written guidelines he says to use good "reference labs." Know that Quest and Labcorp are not reference labs.
So, why not try to find a Burrascano doc. Try to find someone who has gotten at least 3 people well. Get tested by him through Igenex to find out all the diseases the tick gave you, and get treated using the Burrascano protocol.
Outside of our lyme docs, the rest of the medical profession does not have a clue thanks to the misinformation they are fed by the Infectious Disease Society of America.
I understand your frustration. I was left to suffer needlessly for many years due to the lack of knowledge of lyme disease by American doctors. I was then humiliated, yelled at and told I did not have lyme disease after I got my positive lyme test from Labcorp.
It was not until I started going to doctors recommended by lyme support groups that I was treated properly.
I went through 2 lyme doctors who did not know enough to get me well, although they tried and they certainly did not rip me off. I spent over 2 years with these guys.
Then, I switched to the Burrascano doc, and I was finished with my treatment in one year. That can be you too.
I expect that you will not have to fly all the way to Maryland to get a good Burrascano doc, but if you want the names of the ones we have here, let me know.
Why not call support groups and ask for the one nearest you who has gotten others well from this disease.
I wish you and every single lyme sufferer restored health. I thank God for mine every day. Lyme disease stole 5 years of my life. That's why I am still here, trying to help as many lymies as I can and point the way to how to get rid of this horrendous disease.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
I am 61 and contracted lyme and bartonella about 13 months ago. I also was not diagnosed correctly but figured it out on my own after 7 months.
I located a llmd and started treatment in June. We are working together and following Burrascano.
So I agree with TF.
The doctor used the Fry blood smear microscope analysis to find the Bart. The standard tests showed negative.
My doctor says no levaquin if you are over 60. We are going after the Bart now with Rifampin.
If you want to, write my screen name down and you can pm me if you would like some feedback on the Bart treatment with Rifampin.
I believe you have to attack with high doses of abx, per Burrascano, if you want to kill this stuff.
The doctor is not cheap. I see him or talk to him 1-2 times a month at about $200 per visit or phone call. But I believe it is worth it.
Good luck!
Jeff S.
Posts: 43 | From Sacramento, Ca | Registered: Jul 2009
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nefferdun
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Thanks for the uplift that you have actually found a good doctor and - have even gotten well! I have Burrascano's treatment protocol. This is what I took to the first doctor (underlining what I wanted) and what I continue to reference. He is a very good person offering this for free. If it had not been for his guidelines who knows where I would be.
I live in Montana where, until recently, it was believed there is no lyme disease as we do not have deer ticks. Rocky Mt Lab,where the spirrochete was first discovered, is located here about ten miles from my house and a few blocks from the hospital where I was first told I could not get anything from a tick bite but Rocky Mt Spotted fever. The lab has been trying to identify the strain that is causing the infection here in MT. There was an article in the Missoulian Newspaper interviewing the state epidemiologist in 2004, which is how I was allerted to the disease - but I have not met ONE doctor or vet that knows it is here! I talked to the epidemiologist and he told me nothing will show up on a lab report. Thank goodness I had this information and it is because of forums like this that I did. Canada lyme has the article I mentioned and it popped right up when I googled "lyme disease in Montana". I am currently taking rifampin and zithro. $200 per visit is rather cheap. My first visit, with a few supplements but no abx or tests, was over $1000. He is more now.
So I would have to travel a very long way to get treatement. I did it once and it cost a lot.
One reason the doctors treating lyme charge so much is because they are in the line of attack of the CDC and could have their lisence taken away from them. I believe there are good doctor and bad ones and I have gotten more than my fair share of negligent ones.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
Well all I can say that I personally do not rely on docs , I use them as 2nd opinion and lab ordering/prescription. My LLMD costs me $165/visit (which I do 1/month) which I am ok with since buying all the meds online out of pocket would be more expensive.
My motto in this case "if you want it done right - do it yourself". It would have guarded you from costly mistakes like using levaquin
Posts: 856 | From MA | Registered: Jul 2009
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seekhelp
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Coltman, do you have a huge medical background? You seem to know a ton about everything based on what I read here.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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nefferdun
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I agree with you coltman. If my brain fog were not so intense I would be a great lyme specialist by now but I can't remember a small fraction of what I have researched. Half of the supplements I am taking I do not remember why. I just remember they are important. However most doctors don't even know what I know and that is terrifying. When I told the first doctor to give me doxy, he only gave me 200mg a day. I had to call and have him give me 400 mg. Then when I started herxing like crazy he told me I had the flu.
What would we do without each other!!!! It was everyone online that gave me information about what I have (the symptoms), how to treat it and the hope to get through it.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
I'm really sorry you're having such a tough time getting treatment nefferdun. That is one of the worse things about our situation, I think. Because it is so hard to get treatment, some of the people offering it try to exploit us. I think (and hope) that they are the rarities, but that doesn't matter when they are your only choice of doctor.
I see the same doctor (arg!). I hadn't had an experience like neffurdun, but I was starting to feel a little disillusioned. (yay! big word! My brain is working better today!)
Now I'm freaking out...I don't think I really have any other LLMD choices.
This guy does phone consults, and can use a Canadian pharmacy, which makes him way more affordable than any other option for me (since my phone appointments never go longer than 15 minutes, they're cheap...only $100)...plus he lives in a city where a family member visits for work.
If only there were good LLMDs in Montana- it's pretty much as close to me as Seattle- so then we'd both be happy!
Posts: 503 | From Alberta, Canada | Registered: Jun 2009
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should all move there-lol
Posts: 423 | From Virginia | Registered: Nov 2009
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nefferdun
Frequent Contributor (1K+ posts)
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posted
There is a homeopathic doctor with an office in Spokane. She has a chapter in the book that just came out, "Insights into Lyme Disease Treatment - 13 Lyme Literate Health Care Practitioners Share Their Healing Strategies" by Connie Strsheim. She is Dr. H-S.
I don't know if the author of the book chose highly recommended doctors to spotlight in her book or just ones that agreed to allow it. Dr. Burrascano is not given much, if any attention. Spokane is only 5 hours from me.
Yes Karen Mc, if you live in Montana you will no longer have lyme disease! You will have lupus, ALS, MS, alheimers, RA or a combination of a number of other things! I know of a vet here that was dying from heart failure related to lyme. He diagnosed himself with lyme and treated it himself for 8 months with doxy- then went to a homeopathic doctor and says he is now cured. I will try her I guess. It is just that I am not so sure that kinesiology works for me. This vet uses it and he could never figure out what was wrong with my horse. I figured it out! And I cured him too.
I am supposed to put my tongue on a piece of cottona and send the cotton to her for a "reading" of my DNA. HUMMMMM I think I am that desperate. There is a woman that does it for horses that only charges $35. Maybe I could pretend to be a horse!
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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TerryK
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I'm so sorry you've had such a bad experience. You've been through a lot of treatments and practioners in less than 2 years!
I personally think it's good to find an LLMD who is a member of ILADS and who will pay attention to the fact that you are having difficulty tolerating abx and come up with a plan to help you with that. I also have a great deal of trouble with the exacerbation of symptoms from abx.
There can be many issues around detox that can keep you from being able to tolerate abx and keep you from feeling better. Look for an ILADS LLMD who knows a lot about detox since you need someone who can help you tolerate abx. Then stick with them for a few years unless there is something obviously wrong with their advice.
Were you ever allergy tested for any of the abx that you couldn't tolerate? Was detox ever brought up?
Unfortunately many of us spend a lot of time researching because it's one of the only ways to know if we are covering all our bases.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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nefferdun
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No one has ever mentioned detoxing to me except on the forums. I bought something from the health food store but only took it one night. I don't even remember what my reaction was. I will have to try it again. I did contact ILADS and the nearest doctor was Seattle. That is over 1000 miles round trip. I contacted two online support groups for Mt hoping to get help. One person had moved to Alaska and the other moved out east. He was a young person that had to quit school and move to get help.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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quote:Originally posted by seekhelp: Coltman, do you have a huge medical background? You seem to know a ton about everything based on what I read here.
Nope - my background is in CS. In high school I was briefly considering majoring in biology , but then I decided biological systems are suboptimal . They are interesting but I cant wait till we can engineer better ones !
I know some stuff about certain abx, immune system and pharmacokinetics. It is all a product of researching daily for 6+ hours for past 6 months. It is like 2nd job to me . It is a vast area and I have to concentrate only on parts I find relevant to lyme to make any progress (otherwise one can be easily sidetracked).
Huge time investment for me is a necessity because I want to know what I am doing.Its too bad state of medical research is such that that task is very hard, we know is a lot of descriptive stuff but not precise mechanics and causation chains (like this and that happens -but why exactly and what does it mean for our bodies?)
Anyways to be informed about lyme treatment does not necessarily means you have to spend as much time as I do - basic research on all abx and supplements profile listed in Burascano guidelines imho is enough. From a practical point of view anything extra is diminishing returns from treatment point of view. - there is limited amount of things you can actually do for lyme from allopathic point of view
Now of course there are alternative treatments , which is another can of worms, which I prefer not to concentrate on at this stage due to scarcity of data .
Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Neff, your posts attest to the hell these infections can be...
Are you working/married? Perhaps you could consider moving at least temporarily (may not be feasible).
I would suggest avoiding the witch doctors, voodoo, seances, etc. and think about self treating if you have to (like Coltman suggests).
Do you have western blot results or any suggestive blood work?
You could tailor a reasonable protocol around suspected infections (following Dr. B's guidelines for instance) and then secure meds online.
I know self-treating is controversial but if you do your homework and understand the risks then it may be a viable option given your situation.
However, I would try to get some local doc to run thorough blood work (not just a WB but blood count, hormones, the whole nine yards) before commencing...
Let us know how things go.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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I have a question for everyone: have any of you had flea bites in your lifetimes? If yes, do you think it has made your Bartonella/Lyme symptoms worsen?
TerryK
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Member # 8552
posted
nefferdun, This is a tough illness to treat, even for the best LLMD's. In my opinion, self treating with a Dr. B. type protocol would be a mistake, especially for someone who has trouble tolerating abx.
You need a doctor who knows what he or she is doing for so many reasons. I get my liver enzymes taken every 3 weeks and they do become elevated off and on. In the first year, I was close to having some serious liver issues because my liver enzymes were dangerously high and I didn't know it.
If you go with abx, you will need other monitoring too such as for C. diff and yeast infections. For some people, it is imperative to get help for the various genetic and other issues that can be problematic for lyme patients.
As far as I can tell, Dr. B's protocol does not utilize detox and thus may not be ideal for you without the addition of several different types of detox.
There really is a lot to learn particularly for those like me who have trouble tolerating abx. My LLMD has uncovered numerous detox issues for me and treating them has made a world of difference.
For as long as I can remember I could not tolerate abx so I avoided it for decades. I never thought I'd be able to take it for more than a few days and I've no doubt it would have been impossible without the help of my LLMD.
As far as what some might consider "vodoo" type methods, I have to tell you that some of the whackiest sounding things have helped me get through this nightmare of an illness. Of course research everything to the best of your ability (allopathic or other), use common sense etc..
hey Colt, I was a CS person too before becoming too sick to work. I still love computers.
Wishing you the best, Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
LLMD and abx's are needed for long periods without a break especially if infected long time. Just my opinion its hard I know.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Thanks everyone for listening to me complain.I have been self treating so it is not a new idea to me. I have to know what is what as the doctors are not up at night reading and studying. Why would they when they still believe I am an isolated case or I don't even have it at all.
According to the epidemiologist of the state they collected 345 ticks that had bitten people in 2003. 6 people developed the rash. If that was 50% of the infection rate,then 12 people were actually infected. That means one out of 29 people bitten by a tick in the state of MT got lyme disease. Does that sound rare?
I am very lucky that I do not work and I have a healthy husband that understands.
I currently am taking 600mg rifampin and 500mg zithro. I will try to add the diflucan shortly. I will start detoxing too. I was using quercitin, vitamin C - I need to get more of that which helps with inflammation. I am taking milk thistle, 1+ gram magnesium, vit. B12, 100mg HA, 1000mg toa free cat's claw, - 1200mg N acetyl Cysteine and two other things for bio films, 1200 mg Alpha Lipoic acid and 1000mg L acetyl Carnitine. And of course acidolphalus (SP). I have started resveratrol too. I try to get in Co Enz. Q10 - Just so much to swallow! I must remeber to get Chlorella.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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lymie tony z
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Member # 5130
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TerryK,
You're absolutely wrong about Burascano not including detox supplements...
COq10, Cordecepts, Omega3's, B-complex50mgs...
just some of the recommended DrB alternatives the first two for detoxing...
butchers broom might be right up your alley!
Been using Burascano protocol all along....
problem is getting fatheaded doctors who are llmd's to go with it...
Plus folks here who have'nt a clue of his protocol,
espousing that it's no good when they...IF they were true TBD sufferers....would know better!
OH OH....Gee....That felt good!...LOL!
Back to my ole self again I guess!???(well no not really)>am into the HSpirit big time lately!
Everybody and I mean Everybody...wants to have a cure for this,
retrobacteriofungavirus, that is so hard to rid oneself of....
Self treating is never recommended but I find if I go to the right doctor
and listen to what my body is trying to tell me symptematically, take my PRO-BIOTICS....
then I have'nt had to worry about scarey,IDSA Boogeyman junk words,trust me
(and that's all they are so one thinks twice about abx's.
Just ask anyone with chronic acne!) Especially the quote "SUPER BUG"
(which serious folks know IS LYME DISEASE/TBD's
The liver enzymes might be another scarey word....
my llmd in training rarely took my blood for testing of these enzymes....
Even after I told him I doubled the dose of KETEK for ffteen days one monthly cycle
(which(i don't recommend but) cleared up my mitral valve regurgitation...
it's nonexistant at this time.I almost had to twist his arm....
Then only thing is HE tried to find the correct "KEY" for the irradication....
however...I do believe it's somehow tied to our own unique immune systems...
as a retrovirus would become whenever it steals part of the victims DNA,
to hide from that bodies own (working fine) immune system...unless some lunkheaded
mainstream MDuck missdiagnosed one and prescribed steroidal or non-steroidal anti-
inflammatories as was the case with me years ago....
hence my persistent resistant strain or strains/co-infections....
and at time/ just flat out not enough money to launch a serious threat to these little foreign freeloaders....
I tried the Shockra "HEALER" crap way early on....
It just made the RN/nursepractitioner of that junk about three hundred dollars closer to the down payment on her condo.
Do not waste your time and money.
yours truley, AMZSR YFIC
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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Truthfinder
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Member # 8512
posted
nefferdun, I don't find any `homeopaths' in Connie's book with initials involving the letters ``H-S''. The only practitioner with those initials is ``a Holistic Chiropractor, Quantum Neurologist and Certified Clinical Nutritionist.'' Apparently, she's also an ART practitioner.
If she uses homeopathic medicines - and many chiropractors do dispense combination homeopathic remedies - that doesn't mean she's a homeopath! Believe me, I know all about that!
So, if I've got the right practitioner, she shouldn't be categorized as a ``homeopath''. That miss-labeling tends to throw a bad light on genuine classical homeopaths, and most of them don't deserve to be in the same category as this practitioner.
In any case, I understand your frustration and so does my own wallet. But the fact that I'm a very tough, complicated case doesn't mean that anybody ripped me off. With the possible exception of the Mayo Clinic in AZ, I believe that every practitioner I've seen tried to help me. The learning curve for both patients and practitioners is pretty steep with this disease.
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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TerryK
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posted
Tony wrote: Plus folks here who have'nt a clue of his protocol,
espousing that it's no good when they...IF they were true TBD sufferers....would know better!
OH OH....Gee....That felt good!...LOL!
Well Tony, glad that made someone feel good. I did not say his protocol was no good. As it is, it would not work for me and others like me because it does not include the types of detox that we need in order to stay on abx. Adding the needed detox for those like me is likely all that is needed.
What I hear several people saying lately is that Dr. B's protocol is the only one that works. That is not correct and could cause some people to think that if they don't get well using his approach, they can't get well. Some of us have needs that cannot be met with the few supportive supplements that Dr. B recommends. BTW - although those supplements might help with detox, they are not specific detox supplements.
Tony wrote: The liver enzymes might be another scarey word....
Permanent liver damage is more than just a scary word. I know some people on this forum who ended up with permanent liver damage. The drugs we take for TBD's can cause serious damage in inexperienced hands.
Glad you are feeling better Tony. I hope everyone on this forum has the opportunity to learn what they need in order to get better.
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
neff I'm cutting and pasting from some previous posts. Hopefully this will give you some directions to investigate if you continue to be unable to tolerate abx.
Methylation cycle mutations Some of us have mutations in our methylation cycle that make getting rid of toxins (chemicals, heavy metals) and some infections (viruses and parasitic) more difficult. I had the testing for this on the urging of my LLMD and found that I have some significant mutations.
Dr. Y has done some good research in this area. Her research targets mostly autism but there is a group of people who have CFS who also use her protocol with varying degrees of success.
Impairment of glutathione is a possible consequence of some of these mutations but there are many other areas that can be problematic. http://www.lymeinfo.net/methylationblock.html
Debri inside cells In the first year of treatment I got so sick that even standing up became difficult. My LLMD ran several tests to try to figure out what was happening. One test was called a C3d Immune complex. Apparently a high number is not unusual with lyme patients but mine was the higest my LLMD had ever seen.
My LLMD said we were killing lots of bugs but my intercellular matrix was not detoxing enough and was full of debri. I was put on Pekana drainage remedies. I also took gemmo drainage remedies from my LLND. Both of the intercellular drainage products made me really sick at first but I finally started to feel better.
I still take them off and on, especially the tissue drainage remedy Mundipur. Initially I started with the detox drainage pack which targets organs.
Metals When the bugs die, they release metals. You need something like chlorella to bind them in the gut and remove them. I have apparently developed an allergy to chlorella so I am taking chitosan instead. Apple pectin has a similar effect. There is also oral EDTA and many other things that one can take to help get rid of the metals. If the metals are not removed from the body once they are released from the dieing organisms, they can cause many neurological symptoms.
Biotoxins HLA genotype and inability to get rid of borrelia toxins, spider bite toxins and mold toxins (lucky me!)
Some of us with chronic lyme don't make enough of the right kind of antibodies to get rid of borreila toxins. A person can actually have difficulty with all of the toxins above and even more. These are neurotoxins and cause neurological symptoms.
The theory is that those like me, who cannot get rid of the toxins will remain ill forever because the toxins are what is causing the symptoms and they continue to circulate unless removed by specific toxin binders.
Some LLMD's use cholestyramine for that coupled with actos. This is outlined in the Mold Warriors book. There are lots of tests as outlined in the book and on the internet that will help you determine if this is part of the picture for you. One is a tissue typing test. Mine was covered by insurance. Others are to measure MSH, Leptin, VEGF and several other hormones etc..
Those of us who are also unlucky enough to have problems with mold toxins must make sure that we are not exposed to mold in our enviornments. If we are, we will not get well with lyme treatment until the mold and the mycotoxins (the toxins created by mold) are removed from our environment and body. From my reading, it is very hard to get rid of infections while dealing with mycotoxins because mycotoxins depress the immune system.
Herxing is caused by build up of die-off. If you can't get rid of the die-off you will be in a constant state of herxing.
My guess is that many with chronic lyme have a number of these issues.
These issues have been talked about many times here at lymenet so if you are interested in learning more, a search in the archives should uncover lots of useful info. Also, the Public Health Alert publication has many good articles on some of these issues.
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I see a note from a moderator saying they edited my post to remove the doctors name. That doctor does not treat lyme diease so I don't know why her name was edited out unless the rules have changed?
Her practice focuses on autism. I've read her books and her forum and she mentions lyme disease in passing but she is not a Lyme disease doctor and in her materials makes no mention of treating lyme disease. I have never heard that she even participates in the lyme disease/autism conferences.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
Terry, sorry, I was thinking it was another Dr. with the same first name. It's been so busy around here lately for the mods .....
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
TerryK, interestingly I started Deseret Biologicals Systemic Drainage homeopathic formula today and all hell seems like it's breaking loose.
My neck is stiff as a board. Horrid phlegm, indigestion, itching, etc. Is this normal? I have absolutely no doubt I have serious de-tox issues, but none of my docs have the mentality to address it properly. it's a whole other world as Abxnomore has stated many times. I CANNOT believe how hard it is to get a HLA test ordered.
Can simple homeopathic drainage remedies really rock one's world? I'm on NO killing drugs, herbx, homeopathics. I've been off abx on a break due to elevated liver enzymes now for 11 days.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
No worries six. I see no way to contact you. Can you PM me please? Thx!
Posts: 6286 | From Oregon | Registered: Jan 2006
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Seek - Based on my experience and what I've heard from others, drainage remedies can make one feel very sick. I felt sicker for about a month.
My Naturopathic doctor told me that feeling so sick from the drainage remedies means that you need them.
I believe you may be putting more stress on your liver by taking those right now so be sure to watch your liver enzymes. You may want to go slow on those remedies and drink LOTS of water to flush the toxins out.
With that kind of reaction, seems like you are on the right track.
Terry I'm not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
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