I have Lyme and PANDAS - which doesn't make sense

[LymeGreenPanda]

I posted this on the Members Introduction page, and Chemar suggested reposting it here...

 

Interesting forum, as you specify Lyme and PANDAS. Per repeated blood work over the last decade I have both from childhood. I'm a 45 year old man, permanently disabled (so they say for 14 years), and have been on a hard-core course for Lyme for the last year. Things are looking up.

 

First, PANDAS: (Pediatric?)

Diagosed with PANDAS (along with TLD, chronic encephalitis unknown type, Asperger's, CFIDS, and many merely-descriptive diagnoses - over the course of a year at about age 30). Ask my psychiatrist, he'll tell you I have all of them. Ask another doctor, he'll say he only knows about Lyme. Ask another, I have hormone imbalances, and acknowlege auto-immune problems. Ask many other doctors, they'll say there's nothing wrong with me at all and to go see a psychiatrist - which of course is the first doctor that will tell you I have all of those conditions.

 

Second, Lyme:

First tested, and came out positive in 2010. It took until last fall to get a doctor to do anything about it. The "University Doctors" at the same university that did studies that show significant residual effects after Lyme, didn't acknowledge residual effects as being valid until confirmed by the CDC. Ironically that was only about a month after their researchers published findings on mice, a couple years ago. It was suggested elsewhere that I probably have "post-Lyme" and was actually infected when I was a child - which is extremely likely considering where I was living, which also has additional tick-borne infections, only other one I show is that I had (thus IgG not IgM) Ehrlichia Chaffeensis, tested a year apart.

 

So, if I'm so messed up, how is it that I'm writing this (seems to me) lucid message?

How was I an honors student in college?

 

Symptomatically, I have a hard time expressing myself here. Severe anxiety and sleep issues, which only after more than a decade was I allowed to switch to diazepam. I had asthma all my life, which suddenly disappeared at the exact same time as a severely dibilitating bout which left me bedridden for months, only later learning that my thyroid blew out (called Hashimoto's) and my hormones (thyroid, androgenic, increased estrogen) went completely out of whack and a lump grew at my left elbow. All that cannot be coincidence, but no doctor seems willing to put them together. Epileptic response to light (flashing, certain patterns, sudden changes) that merely render me useless (called Temporal Lobe Dysrhythmia) for quite some time. Visual disturbances after originally having 20/20 sight. Glasses can reduce eyestrain (especially prescription dark sunglasses) but the adjustment they make is very slight, yet I need reading glasses to follow text on paper, especially high contrast paper (laser printed black text on high quality white paper is impossible to even look at, there have been times where I must read such a document so copy it to low quality (and lower contrast) paper or directly to my LCD computer screen, which I have adjusted to low brightness, with soft colors.

 

High functioning Asperger's? Absolutely. Meet me on the street and I'll seem quite normal, or rude (If you try to get me to engage me because I won't), but polite and cordial conducting regular business. Meet me a second time, I will have no idea we met the first time unless there's context or you have something unusual about you (they call that face-blindness). Those few 'friends' I have are long time acquaintances that accept me as I am, know I'm 100% trustworthy, and am as helpful as I can be. Yet I will not necessarily recognize them either. Show me a famous face from the 1980's or earlier and I'll tell you immediately who they are - not that I understand that.

 

Physically, I've had times where I was truly athletic, others where I've wasted away, and for longer than I can remember easily worn out. Energy comes in bursts, easily forget to eat, sometimes force myself to eat and it comes back up.

 

Blood Work: (I can't possibly list all of the out-of-range results here)

Anti-DNase B:

at a lab where the reference was a titer of 85:
480 in year 2000

240 confirmed two months later

340 confirmed in 2001

554 at the beginning of this month, with reference of 301U/mL

 

Anti-Glomular Basement Membrane (something about determining Chronic Glomularnephritis due to the above)

21.2 titer (barely positive) in 2002

retest by another lab in 2010 "Neg" with no further information (a few months after severe change)

 

Lyme: (too complicated to elaborate here)

2/2010 - "neg" at one lab

5/2010 - Western Blot "Pos" IgM, with "neg" IgG (fine print says could be false positive with EBV - which I have), and positive for Borrelia Burgdorferi Plasmid (no other tests showed positive)

7/2011 - convervative lab: "Neg"

near simultaneous tests at two labs: one shows Babesia Microti previous infection, other shows "neg"

A doctor decided to treat my results and symptoms as a new infection of Lyme since last October (he's not allowed to treat "post-Lyme" or "chronic Lyme" because they don't exist per CDC, so I've been on a severe course of antibiotics, antimicrobials, anti-whatever for a full year at a cost of $10K so far [covered by insurance] and shockingly, my body is improving significantly.

At first I thought this was due to the simultaneous treatment with Testosterone, as mine was marginally low, and I've verified his treatment all along with a highly renouned Urologist.

Here's where it gets bizarre: after a few months, my testosterone has increased near 1200 (very high) so I keep lowering my dose slowly to less than half, and my level keeps staying up there. The Urologist says this is impossible. He says it is unprecedented. He concludes the only reasonable explanation is that some systemic disease is resolving.

 

CFIDS (Chronic Fatigue Immune Deficiency Syndrome)

HHV4 (commonly called Epstein Bar) tested strongly positive in 2001, 2009, 2010

HHV6 tested off the charts high for IgG in 2001, and 4x reference in 2010, but IgM neg when only test was done in 2001

Symptomatically: thoroughly and completely consistent with this Syndrome, which many will say is not actually a diagnosis, but a description of symptoms; grouping together similar patients. A couple bouts of Fibromyalgia in over a decade, but gladly not long lasting.

 

Tested for just about everything possible, ruling out all the obvious, and ~2001 learned that old records get destroyed, so went back and acquired every result that still existed, and keep every new result, and have them summarized. This prevents retesting the same old things every five years, as happened all my life.

 

After relatively successful time through my 20's, I "crashed" starting in 1998, was put on the first 'band-aid' psychotropics which made things worse, cold-turkey switched to another set (major error and they would know better) which made me bonkers, switched and added and messed with my brain for about a year, then found my present psychiatrist which halted all that, tried several more but conservatively, and finding that they all made things worse, continued with testing and treatment of symptoms and I slowly went through stronger benzodiazepines, ending up stable on diazepam - not to suggest that's any cure, but at least I take absolutely no other psychotropics and do better than when I was on them. Permanent brain damage likely due to the 'bad science' in early 1999. Applied for disability in summer 1999. Have been mostly housebound since, with periods of reasonably good mental and physical health. I realize this is entirely improbable - but it is factual.

 

I'm continuing the Lyme treatment which I guess I'll list (though may be incomplete) which will continue, possibly for a couple more years. Suggestions on protocol changes are welcome, as future stages will include anti-parasytics, maybe anti-malarials, and who knows what else. Thing is: I don't know that Lyme is really what he's treating. It is my suspicion that some systemic infection(s) are being treated, even if they are not even being identified:

1 year on Zithromax, concurrent to the following, some switched, others overlapped depending on how they might interact or affect the liver:

Mepron for four months

Ceferoxime Axetil

Clindamycin

(I think I'm forgetting some)

 

concurrent to (not for Lyme)

Testosterone injections (now tapering off)

anastazole (now tapering off)

Armour thyroid (now tapering off)

diazepam (went up due to effects of others, may taper off)

 

I have basically seven times a day that I take medication per protocol - makes it hard to leave home.

 

Is this typical? Is it even like anyone else? Is it quackery that I'm allowing myself to be subjected to?

 

(I'm terrible at proof-reading, and don't doubt some words or sentences are a bit out of whack)

Lyme Green Panda (with TLD and CFIDS, too)

 

[pr40]

You need to inform yourself about the conditions you have and choose what you want to believe, first.

than, second, whatever it is that you have chosen, you have to become your own doctor. what you have is an individual expression of an auto-immune condition -- all you docs agree on this or at least most of them.

cause of it is not as important as treatment. you can take lyme test with IGENX just to make sure and you can also do Cunningham's for PANDAS. I assume you did myco and it came negative.

Usual treatment on the forum is

1) IVIG, abx, anti-inflamatories

2) methylation

3) diet and healthy life style

lot of support and with luck, you may regain some quality of life.

In my experience, people with similar symptoms to yours may not have other choice but to try this.

[rowingmom]

Lyme (and coinfections) and PANDAS (now called PANS because specialists are coming to realize that the autoimmune brain inflammation component can be caused by things other than strep) makes definate sense to us.

 

As for the "pediatric" part, the forum is seeing some adults impacted by this syndrome. Whether or not they were effected as children and the syndrome continued into adulthood, or whether symptoms developed from infectious exposure later in life is unknown.

 

In our daughter's case her PANDAS/PANS symptoms were caused by bartonella. She had a couple IND lyme-specific bands on the Igenex WB, so lyme is there, but her problems were caused by her bartonella coinfection.

 

Raging, age regressive social behaviour, problems with spacial interpretation/orientation, her inability to interpret social cues, and indeed her diagnosis of asperger's, have resolved over the last 2 years with multiple combination antibiotic treatment.

 

We work with an ILADS-trained LLMD who treats clinical symptoms. After 1.5 years of treatment our daughter was still unable to wean from abx without immediate relapse. In an attempt to discover other causes for this reaction, our LLMD suggested malarone to address hidden protozoan parasitic infections (DD had tested negative for babesia, but there are many other protozoa/parasites). She improved impressively after this protocol was started, and was able to wean from abx in April. We continue with Buhner and ByronWhite herbal supplementation because I have no confidence that these infections can be completely erradicated.

 

You are lucky to have found a doctor who will experiment with treatment in the way ours did. Sometimes this is the only way to pin down the complicated multiple infections resulting from the immune suppressing abilities of lyme and the coinfections.

 

Lyme/co can impact hormonal regulation. So glad to hear that your hormonal imbalances are also responding to treatment. Many allopathic doctors can't understand the connection between hormonal disregulation, psychiatric symptoms and infection, but most naturopaths and LLMDs will.

 

Best of luck in the future, you are on your way!

[Orion]

Hi and welcome!

 

Your story has a number of similarities to my adult child's story. Several points I would like to make:

 

First, Dr. Madeline Cunningham mentioned once, in a radio interview I believe, that her NIH-funded study looking for autoimmune antibodies ended up including people up to the age of thirty. Yes, so much for just affecting children.

 

Secondly, Lyme's OspA is very much implicated in Lyme (PANS) associated auto-immune disease. To me, the unanswered question is, at what point is it all just auto-immune, versus a chronic underlying spirochete infection/inflammation that continues to fuel the autoimmunity.

 

Third, Lyme can definitely impact hormones. There was a point, after my child's thyroid shut down, that the endocrinologist was afraid he was dealing with a panhypopituitarism, where the pituitary isn't functioning at all. Fortunately, there was still some minimal pituitary function, and over time with long-term antibiotics, a number of, but not all of her hormone levels have returned to normal range (including testosterone).

 

Forth, Very interesting how your asthma semed to resolve with the long-term antibiotics. Same thing happened here. I am curious, were you ever checked for Mycoplasma Pneumoniae? That is implicated in asthma, as well as chronic fatigue. Even though the asthma is no longer an issue, DD's Myco Pn titers are still high.

 

Best wishes to you.

~orion

[LymeGreenPanda]

Wow, information overload... it's hard to know where to begin...

Yeah, I am my own doctor. Or rather, I have one that is completely open to tests and (within limits) changes in meds; a second doctor that is treating me as if I am a brand new Lyme patient (wink, wink, nod, nod - he isn't allowed to treat late-stage, chronic, or post-lyme which per the CDC don't exist) and for hormone imbalances, and a third specialist who weighs in on results and suggests changes to my protocol. I've seen many practicing doctors (few that have had enough practice to know what they are doing) over the years, but the first one mentioned was there from near the beginning of disability (maybe 6-8 months after doctors screwed me up worse to begin with). Antimicrobials may last another couple years, and I do take probiotics though they seem a waste since I'm sterilizing my body three times per day - will get serious on probiotics when the anti-bacterial stage ends. I underlined bacterial - because at some point I'll be taking other antimicrobials that will not kill the probiotics (or maybe not as quickly).

 

The asthma was indeed Mycoplasma Pneumoniae, but it's end (though the CFIDS did not go away) was spontaneous concurrent to massive changes in my body, trashing my hormones, raising auto-immune titers (to thyroid, at least), and growing this fatty lump on my left arm, in December 2009. What the heck is this lump? I won't let them biopsy it because of what I heard of it potentially being stored "bad stuff" and puncturing it will just allow it to leak to my system, and their idea of removal is to chop through major veins so I'm loath to have them do it, unless it changes or begins to prevent mobility. It hasn't changed since it grew all at once, and I only know it is there if I look at it. (like someone softened a large chicken egg and stuffed it in my arm, maybe turtle egg would be more apt but I've never seen one for comparison!)

 

Anti-DNase B was first tested around age 30, several times since, and I just had it tested last month at age 45. Varies, but is always really high. Other autoimmune antibodies are present (like anti-TPO AB and others) and it does seem that the Lyme protocol has reduced several seemingly unrelated effects. That I am now having to lower my "exogenous" hormones because my "endogenous" hormones appear to be recovering is unprecedented per the Urologist. G.I. symptoms are too aweful to discuss publicly, but let's just say that I am extremely careful about what I eat. Colonic hydrotherapy was a great stabilizer several times, but now I actually have my own machine, not to be too detailed about it but that I don't have to be as thorough because I can always repeat the process. So I don't clean past my ascending colon, and only rarely need I repeat. Terrible symptoms are now gone. There are few foods that I can really digest.

 

Bartonella was tested as negative, though Ehrlrichia shows IgG, and narrative of test does not rule out current infection of HME or other Ricketsial infection. Though each have names, I have HHV1 (cold sores, rarely), HHV3 (had chicken pocks, no complications), HHV4 (Chronic Epstein Barr repeatedly verfied through testing), HHV6 (am looking further into that), not HHV2,5,7,8. I only hope that this shotgun approach of antibiotics/antimicrobials/anti-parasytics/antivirals/antifungals/anti-??? slowly changing from one set to another and watching my liver actually clobbers whatever has infected me and caused my immune system to attack me; I don't care anymore if they pinpoint what it is/was, but that they get it gone! Gladly fungi have not taken their place. I did have Candida problem for years, but I guess eliminating that was the only good thing that came out of the divorce (my ex left me once I was disabled). IGeneX found the Lyme, and another lab found "previous" ehrlichia.

 

Several acronyms here are new to me, though I might know what you mean if you spell them out: LLMD (I'm guessing Lyme Literate MD?), ILADS trained, OspA, PANS, antibiotics affecting auto-immune system directly, Methylation (in clinical context - can't be "add methyl group to a molecule...").

("DD's Myco Pn" was a mystery until I figured DD is a name, Mycoplasma Pneumonia was the rest!)

IVIG was refused for me, as not being of comparative value as I'm not in an acute stage.

Elkova: I got your message, and see you removed it from here for privacy, I'll try to respond by PM but at the moment am overwhelmed.

I guess that's worth mentioning (or maybe obvious): I get overwhelmed.

 

For the most part, I'm doing much of what is suggested for about 13 years. It took me less than a year to figure out that allopaths are of no value past setting bones and stitching cuts (and to this day I wish I stitched one wound myself, due to a careless doctor), I don't take a pill until I have researched it thoroughly; and shrinks are for the most part just helpful to get advanced tests and stronger meds when needed. My attitude really pisses some of them off - so good thing I have plenty of other doctors to choose from! I have what's called "Medi-Medi" so I can go to any doctor I want that accepts it, and one doctor I've paid cash for 14 years - but for the most part he takes care of me pro-bono for nearly ten years. If I want to go to a doctor that takes only Medicare and not Medicaid, I simply leave off the Medicaid part from the form and (such that I can) pay them their co-pay out of pocket. I occassionally see different doctors than my "core group."

Edited October 1, 2013 by LymeGreenPanda

[rowingmom]

First thing, I feel you really need to be supplementing with probiotics. We used 75 billion mixed cultures daily with most being given at night, the idea being that they may have time to colonize while you are sleeping. We used FloraSmart, Culturelle and Align. Take at least 2 hours away from abx. You run serious risk of developing C. diff and candida overgrowth with long term abx use. The gut is a very important part of the immune system. Some PANDAS children have trouble with strep-containing probiotics (S. thermophilus) and need to avoid yogurt and kefir for that reason. Some use saccharomyces to help candida over-growth, but others can have trouble with it causing the yeast symptoms we are trying to avoid.

 

As for acronyms:

ILADS: International Lyme and Associated Diseases Society http://www.ilads.org/

PANS: Pediatric acute neuropsychiatric syndrome http://latitudes.org/downloads/pandas_pans_scale.pdf

Methylation: Quite a few of us are finding that our children have MTHFR genetic deletions which impede the methylation cycle. http://mthfr.net/

DD: Dear daughter, DS: dear son, DH: dear husband, etc.

lipoprotein OspA: an outer surface protein of Borrelia burgdorferi sensu stricto

Antibiotics as anti-inflammatory agents: http://www.ncbi.nlm.nih.gov/pubmed/12054075

 

You may find more information pertaining to your specific symptoms on this forum:

http://flash.lymenet.org/scripts/ultimatebb.cgi

Edited October 1, 2013 by rowingmom

[msimon3]

From what you described, the key factors I see are:

• On Lyme: "First tested, and came out positive in 2010. It took until last fall to get a doctor to do anything about it."
• On your doctor: "he's not allowed to treat "post-Lyme" or "chronic Lyme" because they don't exist per CDC"
• On your treatment: "so I've been on a severe course of antibiotics...and shockingly, my body is improving significantly"

 

You would benefit from seeing a doctor who understands chronic Lyme disease thoroughly, and who is willing to treat the disease appropriately and with modern methods. Many doctors affiliated with ILADS will be suitable, and several members here can provide you with recommendations and personal experiences. Some of these doctors will not accept insurance -- this is by design to avoid treatment interference from the insurance companies and ultimately frees the doctors to treat you as they see fit -- this is a relatively expensive approach but arguably the most reliable approach for getting appropriate treatment.

 

Given your other symptoms and conditions, finding an LLMD who has a background in immunology would be best I think, as he/she would be able to address those conditions in addition to the Lyme disease.

[LymeGreenPanda]

...choose what you want to believe... you can take lyme test with IGENX... also do Cunningham's for PANDAS. I assume you did myco and it came negative.

iGeneX came out positive, as did a couple Quest tests: Borrelia, Babesia, Elrhichia, anti-DNase B AB strong positive five times 2000-2013, ASO negative, Mycoplasma Pneumonia positive twice (IgG), HHV4 strong positive repeatedly (with CFIDS & Fibro), HHV6 IgG positive, TPO strong positive, hormones out of whack. What does that add up to? I have no idea! My neurological difficulties have always been mild compared to most of the children described who's parents are on this forum.

 

I don't "want to believe" anything; just follow the evidence as best I can. I can't donate $1K for Cunningham's; unless it directly offers a significant change in treatment/protocol. Curious why the assumption that 'myco' came out negative, as Mycoplasma Pneumoniae IgG tested twice as positive - does that mean something useful?

 

I'm now off the antibiotic protocol a couple months after a year which had a sort of strange ending: my Lyme doctor (who has half of his walls plastered with Lyme related information) called me the evening after some test results arrived and my Liver results (AST/ALT) skyrocketed to tell me to stop taking metrinitizole and shortly thereafter took me off all Lyme medications and said he isn't a Lyme doctor but a GP and I need to see a Lyme doctor. What??? Sounds like he got scared of liability. He has me on some 'magic drops' that make his office money, supposedly boost my immune system, "A-L Complex" which has a tiny amount of many beneficial plants. From what I read, this micro-shotgun approach is inconsequential. I'm taking it anyway, so I'm 'compliant.'

 

My hormone levels have been rather strange. Estradiol dropped to the point that I discontinued the inhibitor, and is now at a healthy level. My testosterone stayed high with ever decreasing dose, started to drop so I increased proportionally, then went from 858 (healthy) to 155(way low) yet I wasn't blacking out, and my liver values bounced back up (no alcohol, OTC or illicit drugs). My "Lyme" doctor received the results at the same time, yet hasn't contacted me. I upped my testosterone dose to the full prescribed amount and am feeling better - but haven't even heard from that doctor over a month since the test results. I wouldn't be surprised if the next test result is way off and I have to adjust yet again.

 

Status update: I have no evidence that a one year massive antibiotic/anti-microbial protocol has done me any good, just taxed my liver. Hormone treatment has been perplexing. Gut is only getting better after d/c ABx, still not normal.

 

My Neuro-psychiatrist's office is arranging a 3-way phone consultation with a distant Lyme & Hormone specialist soon; that will allow him to prescribe according to the distant doctor's recommendations. That my Neuro-psychiatrist has to handle everything is perplexing. I may soon have transportation reliable enough to get the the SF Bay Area which likely has specialists (though a hard trip for me, I don't travel well any more), even ones that take Medi-Medi (Medicare A,B,D,extra help; Medi-Cal (CA Medicaid)), such as any University of California hospital. The closest UC hospital isn't helpful at all; there's no such thing as adult PANDAS, no such thing as post/chronic-Lyme, and they are not taking any new endocrinology patients.

 

Found new information that seems controversial; then found it discussed on this forum as well:

Dr Jory Goodman claims to have solved PANDAS completely for some adults through T&A (until you read the fine print):

http://www.psychologytoday.com/blog/attention-please/201107/evil-pandas-part-ii-adult-affliction-treatment

then I looked him up:

http://www.ratemds.com/doctor-ratings/175790/Dr-Jory+F.-Goodman-Beverly+Hills-CA.html

Love him or hate him, most hate him it seems. But I suppose his concept of removing tonsils and adenoids (T&A) may have merit, though the jury is still out, and certainly seems best to go elsewhere for treatment. His observations on HRT are coincident with my own independent conclusions (I split testosterone to 2x/wk and microdose anastrazole daily when I take it).

 

For someone like myself, who has been permanently disabled for almost 15 years, many years after a hard childhood (with well over a decade of high functionality between), after trying so many protocols - surgery is not out of the question. I even accept the possibility of a flare-up of more than six months; if my functionality long term increases so that I don't spend the rest of my life housebound and alone in a subsidized apartment for the disabled (as I do now). However, I'm not going to go through T&A just because I'm desperate. Some reference has been made to people for whom this treatment has made life much worse. I have not found any long term results from adults that have gone through T&A... Can any adults offer their results after at least a year from T&A removal? (even longer would be great)

 

"First thing, I feel you really need to be supplementing with probiotics. We used 75 billion mixed cultures daily with most being given at night, the idea being that they may have time to colonize while you are sleeping. We used FloraSmart, Culturelle and Align."

After ABx ended, I've been taking probiotics heavily; Mutaflor (e coli Nissle 1917) helped (but illegal to import, I got one shipment but may not get another), taking Align currently, will try other 'monotherapy' probiotics in rotation rather than mixed cultures (a new idea I'm trying, after reading this:

http://www.cortjohnson.org/blog/2013/12/15/ken-lassesen-changing-gut-ecosystem-probiotics/

(and related articles by the same guy - who is not a doctor)

Maybe I'm having a hard time with ones that contain Strep - I hadn't considered that. My gut has Alpha & Gamma Strep in high numbers, and zero e coli, doctor prescribed a drug to kill Klebsiella at my request (he wouldn't have bothered otherwise). Gut dysbiosis (tested before ABx, and ten years earlier) is way out of whack. Not sure what it would be if tested right now. I'll put a lot of effort into the probiotics now that ABx don't kill them off daily. Never ended up with Candida, no idea if c. difficile or others took up residence, but I don't come in contact with people, use a foot, clothes, paper towel to open doors when possible or pinky choosing less used surfaces. I avoid hand-shakes and wash my hands a normal amount but particularly after potential exposure to other people's germs. Germophobic? I'd rather consider it prudence!

 

Well, I hope that post makes sense overall, and my questions are clear enough. I have a hard time putting together the overall picture (is that OCD or ADD? I'll sit here and revise it a few hours to be sure, just kidding...sort of).

Edited February 8, 2014 by lymegreenpanda

[rowingmom]

If allopathic medicine has failed, I would suggest taking things into your own hands; reading Buhners books:

 

Herbal Antivirals

Herbal Antibiotics

Healing Lyme Coinfections: Bartonella and Mycoplasma

 

and perhaps consulting with his associate (Julie McIntyre - PlanetThrive).

 

You seem educated enough to come up with a protocol that will help clear the infections you have tested positive for. With help from Buhner's books and input from his associate, this should be entirely doable for you.

 

That is what I did because our LLMD was not versed in herbal medicine. She was great with abx, though. After reading Buhner's books, I made a list of herbals that would address bartonella, lyme and perhaps babesia. I ran them past McIntyre and she OKed the whole thing (and suggested a couple more things besides).

 

Many of the herbals he recommends cover not just a single strain of bacteria, but many, with coverage for virals/protozoa as well. His protocols are synergistic. They address immune supression and multiple infections at the same time. They contain efflux pump inhibitors which result in an inability of the bacteria to develop resistance.

 

Here is another example of a good synergistic protocol that has been used by several on a different lyme/morgellans forum to resolve morgellons:

 

http://archive.feedblitz.com/426882/~4641978#0

 

Several of these herbs are used in Buhner's protocols as well.

 

The books are well worth the read.

[LymeGreenPanda]

One thing puzzles me, forgive me if it is addresses elsewhere...

Many people here have difficulty from a very early age (I was told that I was really late speaking, but made up for lost time (ADHD) when I did).

While tick bites were a very real part of my childhood, from as early as age 4 when I first moved to the Ozarks, then Tennessee, then Mississippi Delta, then the Ozarks again; how likely is it that a tick bite is relevant to all these cases of being Lyme positive?

In other words, could Babesia, Bartonella, Borrellia, and/or Elrhichia be false positives for something else (from booster shots or some other vector)?

Or is it a matter of combining genetic predisposition with booster shots with tick exposure and maybe other factors to make a combination that results in results such as PANDAS, OCD, CFIDS/Fibro, ADHD, Tourettes, etc in some people?

Then, is it that people like myself still have the infections acquired as young children which certainly had symptoms as a child but maybe puberty overcame the difficulties, and the auto-immune and other effects popped up decades after the infection is killed off or even benignly present?

(Maybe I'm asking questions that science hasn't answered yet)

 

One more confusing thing: my mother was not inclined to go out in the woods, so her chances of getting a tick bite (living in the same places) would have been remote in the extreme. Yet many of the difficulties I'm having, she had. She died before age 60 after slow deterioration from age ~30 - roughly similar to my timeline, and at least part of her physical problems were caused by doctors cutting out organs and giving her a massive, ever-changing drug cocktails (from the 1970's to 90's) that maybe she didn't need if they would have just left her alone in the first place. She had flares of one problem or another that have no cure, and each would resolve mysteriously after a few years - and they gave her all kinds of treatments (many severe) because of her test results. I think her treatments are what killed her.

 

I have tested positive for many things, and refuse treatment... and what do you know? They resolve in a few years without treatment. I mask many problems with diazepam (after seeing my doctor over 12 years) because I react so extremely poorly to psychotropic drugs and seizure medications, actually to most medications. So I don't take any (besides diazepam). HRT (bioidentical hormones replacement) has been my most beneficial treatment, and I hope to get that dialed in better. Yet it seems that some people quit having hormone imbalances after ABx and other (herbal) treatment for infections. This is confusing to me. I don't expect anyone to be able to explain the similarity between me and my late mother. I have no idea if removal of organs (tonsils and adenoids) is wise, given that they cut many organs out of my mother (I expect she had her tonsils removed like so many of her generation, but doubt adenoids were ever mentioned - I hadn't heard of them until last week; when running into Dr Goodman's papers.

Edited February 9, 2014 by lymegreenpanda

[rowingmom]

Buhner's take on this is that these infections have always been present, and that if a person's immune system is functioning adequately the infections will remain benign. It is when the immune system is compromised in some way that the infections can come to the forefront. Many of these bacteria can be readily passed between members of families or people who come into close contact or exchange bodily fluid. Borrelia is a spirochete, similar to syphilus and can be passed to partners and through milk from an infected mother.

 

He says that these bacteria act parasitically, producing the cytokine cascades they do in order to destroy tissue and release the nutrients they require. That the symptoms caused by infection are either bacterial endotoxins produced by die-off or the nutritional deficiencies that the infections produce. He believes that by addressing the various cytokine cascades with the proper antibacterial/anti-inflammatory herbs will decrease tissue damage thereby decreasing pain, while also making nutrients less available to the parasites.

 

Immune systems can be compromised in many ways.

 

Metals used as adjuvents and preservatives in vaccinations. When I was growing up I had 8. Children are now routinely receiving >40.

 

Pesticides and GMOs target not only the guts of insect pests, but also similar metabolic systems in our own probiotic gut bacteria. Good gut bacteria are reduced in number, gut pathogens are allowed to grow and the immune system (a large part of which resides in the gut), and the proper functioning of our gut bacteria is destroyed.

 

Nutritional deficiencies are rampant. Grains to the extent we are told to eat them these days, we never available to our ancestors. They ate omega 3 replete fats from grazed livestock, we eat those fed with GMO high inflammatory omega 6 corn and soy beans. Most people only eat a couple of servings of vegetables a day.

 

Terry Wahls is a medical doctor who cured herself from many of the symptoms of MS, which by some is believed to be an autoimmune condition, with proper organic ancestral diet.

 

https://www.facebook.com/Dr.Terry.Wahls

 

Others have recovered from autoimmune symptoms addressing the issue of pathogenic gut bacteria and small intestine bacteria/fungus overgrowth.

 

http://drbganimalpharm.blogspot.ca/

Edited February 9, 2014 by rowingmom

[LymeGreenPanda]

I guess this is as reasonable place as any to ask this... (may as well be in context of my situation)

A lot of things are getting out of whack, too much to list here and confuse the issue. Point being that things keep changing. Nothing stays stable. My body is developing antibodies to a bunch of parts of myself!

 

Monday a surgeon is going to look at the lump on my left arm (mentioned early in this thread, larger than a chicken egg), which may be growing again (someone else suggested it is, I'm not sure). This brings up a few questions:

1. What is this thing, assuming it is related to this overall condition and is not a lipoma?

2. The last time I was put under, I nearly died and they had to reverse some drug. They want to put me under. Is there any research related to PANS/Lyme reacting differently to general anesthesia, or any pointers on... how to get through it without damage?

3. Is this thing doing me any harm (like acting as a reservoir for infection, producing chemicals including hormones, or such)? Because if it is not causing me any harm, and will not cause me any harm; it seems best to leave it alone. The university hospital can perform any appropriate tests, but from what I read elsewhere, if it is Lyme related then it is a deposit of some 'waste' and it should not be biopsied (punctured) but either left alone or removed.

 

I wasn't worried about it until I was just asked for an "Advance Directive."

Edited March 28, 2014 by lymegreenpanda

[Missmom]

The lump on your arm, have they x-ray'd it? Have they ultrasounded it? I would think that would be the easiest thing to do. Just like women have a lump in the breast, they usually want a mammogram first. I would want to see it first before surgery would be discussed or considered.

[LymeGreenPanda]

I think they do these things Monday. Someone else mentioned a test introducing something into my blood so they can see the bloodflow into or around it. No tests done to date.

 

They may also want to biopsy it. However, some time ago I read that if the lump is "a waste deposit" from Lyme, it should not be punctured (biopsied) but merely removed so it doesn't leak into my body.

 

Alternatively, can they "liposuction" the thing, even if it is a fluid reservoir?

Edited March 29, 2014 by lymegreenpanda

[ktdommer]

I noticed you haven't mentioned treatment with plaquenil or tindamax. Doesn't seem like a Burroscano treatment.

Is babesia ruled out? Gave you tried rifampin?