posted
My daughter has been in treatment for almost 3 years now, she just turned 15.
She has reached a platue. The neuro, cognitive, rage/depression,and slow processing spead is profound. The Bart rash cleared from buttocks but has now gone to breasts.
She is seeing an LLMD however, she has been on the same drugs: Mino, Zith and Tindamax for 3 years now. Yes, she has come a long way but all of the above is still profound...in fact it effects her quality of life greatly. She is on homebound now. She has anxiety, fear, rages, slow processing speed, forgetful, extremely tired, weight gain, etc. She was dx with PITANDS as well
Her LLMD "doesn't do suppliments" and I have no help down here...it is thought Lyme Disease doesn't even exsist in the south! I feel like it's time for a re-adjustment in meds.
However, she does tolerate what she's on well but is not advancing. She was never treated for parasites...unless Tindamx does that?
Here are her recent labs-after 3 years of abx-to include Milk Thistle, which I heard was bad to take now because it can render meds ineffective, is this true???
SLIGHTLY HIGH: MCV & RDW
HIGH Mycoplasma IgG HIGH: 145 range:0-99 Antithyroglobulin Ab HIGH: 124 range: 0-40 HHV6 IgG Antibodies: HIGH 12.00 -positive >0.99 Antinuclear Antibodies, IFA Homogeneous Pattern: HIGH 1:640 -Positive >1:80 Pneumococcal Immunity 14 Type: Positive
SLIGHTLY LOW Vitamin D 37 range:32-100
Diptheria Antitoxoid Ab: Positive 0.28 range: <0.10 Haemophilus Influenzae B IgG: Positive 0.61 Not immune to Hep B Surface Ab 0.67 -consistent with Immunity >0.99 Tetanus Antitoxoid IgG Ab: 0.92 -protective >0.10
WB IgM: Positive **31+++ **34 IND 41 IND 83-93+
WB IgG: Negative 41 IND
Any help with what these tests mean and what I should be asking, doing, taking etc would be appreciated so much.
I tried to call the office to find out what all this meant which I rarely do-6 times in 3 years, and was brushed off. "Well if there was anything wrong we would have called you..the doctor doesn't have time to go over every single one with you" I politely got off the phone and cried. I am very sick with 37 years of Lyme undetected myself so it's hard for me to fight-nor do I want to
I am so upset, hurt, worried and confused...the entire family is listening to my sister in law who is a PA & former drug rep. She tells them there is no such thing as Chronic Lyme and I'm doing more damage than good.
If that wasn't bad enough, my husband has decided he too, now doesn't believe it either and has moved to another state. The icing on the cake came a few weeks ago: we have mold...not a ton, but enough to be detected on air samples in two out of four areas of the house.
I see where some doctors help their patients with all of these entities and then some...how do I get this same treatment? Please pm me with some names if you would please, I'm desperate and worried I won't be able to get on the right track before I lose our insurance
I am so scared and confused, my neuro Lyme brain isn;t helping either and my oldest has the rage Bartonella and refuses treatment because her dad says it's not good and harmful! I don't think I can handle much more..plus trying to sell, work and teach at our home now is scary with no real full time job or insurance. Is disibility hard to get?
Sorry for all the questions, I'm desperate and insomnia/worry has kept me up with racing thoughts. Exhausted, finally going back to bed. Thank you again for your help
Posts: 73 | From USA | Registered: Jan 2012
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
I agree with the parasite cleansing. These ticks can carry parasites/worms which are an often overlooked co-infection of Lyme.
After 4 yrs of abx incl 6 mos of IV Rocephin, doing antiparasitic herbs and salt/c was the only thing that turned the corner for me.
One mos is not enough. There are people on here that are taking Ivermectin and feeling better along with expeling parasites.
Check out the symptom list at Humaworm and do a search on here for parasites. After 3 yrs of abx, it's time to take another approach.
P. S. Dr. K. treats ALL of his patients FIRST for parasites and SECOND for Lyme. Most LLMDs are unaware of this co-infection.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
I am sorry your daughter has been so sick.
I recommend getting another opinion. Your daughter had been on the same meds for three years? I don't think this is typical especially when she is still sick.
posted
I'm running out the door right now, but I will pm you later. My dd (15) was in the same position as yours a year ago (after being on a plateau for over a year)--she was in such a bad place and we were all so demoralized that there would be no end to treatment and dealing with these infections--but a lot can happen in a year, and she is so much better now after stopping all abx and switching to herbals--close to 100%--we are only working on the missing pieces now, i.e., thyroid/adrenal fatigue, parasites, etc.
There is hope of recovery--it is unfortunately a long, hard, sad road--but you have to trust your gut and move forward in the direction that is right for your family. I wish I had listened more to my gut when dd was in her plateau because I would have switched her to herbals/alternatives a lot sooner. She definitely needed the abx for much of the time she was on it, but I now believe, we could have switched to herbals a lot sooner--when we saw the plateau continuing.
{{{HUGS}}}
Posts: 648 | From northeast | Registered: Feb 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
When a patient plateaus, the treatment has to change. Since she is no longer advancing, she has defintely plateaued.
This happened to me. I was with a doctor for 2 years and he never changed my meds. I improved to a point and then no more improvement. I changed doctors and in 13 months I was rid of lyme, babesiosis, and bartonella (became symptom-free after 7 months with new doc). So, the doc is the key to getting rid of these diseases. Can't emphasize that enough.
It is now 7 years since I completed my lyme treatment and I am still symptom-free, living my life.
I don't know where you are in the south.
If you are willing to see a lyme doctor in Washington D.C. that will do phone appointments after the initial in-person appointment, let me know. She is tops. I can tell you all the organizations and top names in the lyme world that recommend her.
She does supplements, nutrition, immune enhancements, detox, herbals, will test her adrenals, etc. and figure out what needs to be done to get her progressing again.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
TF Thank you so much! yes, she sounds wonderful and congrats to you! I can opnly imagine what it must be like to be symptom free!
If you don;t mind pming me her name I would love that! God bless!
Posts: 73 | From USA | Registered: Jan 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Any LLMD who "doesn't do supplements" can pose a risk to the patient as the liver absolutely, positively must have some support. Adrenals, too.
Liver support helps protect the ears from some of the ototoxic antibiotics, too.
Key supplements can make treatment much more tolerable in many ways.
Hope the detail here helps. Best of luck to you and your daughter.
Diagnosing Lyme Disease (&/or whatever else is going on)
Other tick-borne infections and other chronic stealth infections - as well as certain conditions - that can hold us back are discussed here.
=================================================
Some LLMDs have become educated about certain supplements and that may be fine for many. For those who may need additional expertise . . .
when considering herbal / nutritional / adjunct methods:
if at all possible - because each person & each case is different - it's best to consult with an ILADS-educated LL (lyme literate) doctor who has completed four years of post-graduate medical education in the field of herbal and nutritional medicine -
- and someone who is current with ILADS' research & presentations, past and present.
Many LL NDs incorporate antibiotics (depending upon the licensing laws in their state). Some LLMDs and LL NDs have good working relationships.
When possible, it's great to have both a LLMD and LL ND and even better when they have a long-standing professional relationship.
Integrative / Holistic M.D., etc. (Be aware that those in this category can have various levels of formal herbal &/or nutritional education, perhaps even just a short course. Do ask first.)
Links to many articles and books by holistic-minded LL doctors of various degrees who all have this basic approach in common:
Understanding of the importance of addressing the infection(s) fully head-on with specific measures from all corners of medicine;
knowing which supplements have direct impact, which are only support and which are both.
You can compare and contrast many approaches.
BASIC HERBAL EDUCATIONAL & SAFETY links,
BODY WORK links with safety tailored to lyme patients,
LOW HEAT INFRARED SAUNA detail,
BIONIC 880 (& PE-1) links, and
RIFE links. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Manybites, that is great information and something I suspected should have been done by now. The only problem is I hear about all these great herbals, detox products, etc but don't know how to use them in conjunction with treatment.
I am the type of person (due to having chronic Lyme for 37 years) who has to have it spelled out for me (times, amounts, etc) or I go into anxiety mode.
My neuro is so bad I ask to record sessions so I can remeber everything. I play them back over and over again.
Does your doctor allow this, if you don;t mind pming me the name that would be great!
Posts: 73 | From USA | Registered: Jan 2012
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Here is a site that explains the antithyroglubulin antibody results:
Lots of her symptoms point to low thyroid (weight gain, tired, slow processing speed, etc.) Treating the thyroid issue alone can make all the difference in the world.
I will send you the name and info now regarding the doc.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Gael, I bought the HUmaworm after reading your posts a while back and wanted to start it for us (even bought some for the dog) but the doctors won't give us direction for the suppliment.
One doctor says "he doesn't do suppliments" and the other doesn't know much about Humaworm and says he can't give us direction.
Like i metioned in the above post, I don;t know where to begin, start, stop with theo ther meds and feel very anxious about giving it without guidance.
Could you pm me your doctors name if you don;t mind and possible a little more about how to go about this?
Thank you so much! All great advice!
Posts: 73 | From USA | Registered: Jan 2012
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posted
Keep in mind both of our doctors are famous and well respected so I am a little stumped. Of course I don;t want to say anything bad about them because they have helped a great deal but I know there is more we are not getting at and I am getting very frustrated!
Posts: 73 | From USA | Registered: Jan 2012
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posted
Thanks so much TF. My natural response was to ask her Immunologist about this (as the Thyroid has been going on for well over a year and a half now) but he said abx and IVIG should take care of it.
Well we were denied IVIG and going on 3 years of abx! He said that her thyroid numbers themselves are ok and that sometimes he sees patients with much higher numbers...
I underrstand she is not the worst case scenerio but I am worried if we don;t do something she will definately get worse (as she has platued).
I don;t know what to do, he says to do nothing (and he is well respected too)! Am I going crazy here?!
Posts: 73 | From USA | Registered: Jan 2012
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posted
When they refer to her thyroid they call it Hashimotos...well doesn;t that justify for any type of treatment? I'm so confused!
Both well respected docs, LLMD and Immunologist work well with each other but stand divided on this.
Immunologist says no treatment needed, LLMD says yes and wants to put her on antidepressants (because she does have PITANDS with high anxiety) but wouldn't it stand to reason that if we supplimented (with Armour or Levo-which do you like best?) the depression, weight gain, etc might get better?
Posts: 73 | From USA | Registered: Jan 2012
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posted
A Mom with Hope thank you so much for your pm, I am going to message you tonight. This is great advise and I appreciate you reaching out to us, ttys
Posts: 73 | From USA | Registered: Jan 2012
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posted
Thanks Keebler, I agree. But I have been told she is too young (15 now-three years in trmt)to develop any damage and says it's the suppliment industry just trying to make a buck?
Posts: 73 | From USA | Registered: Jan 2012
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posted
Now I have heard that Milk Thistle can cause more problems and actaully hinder treatment by interfering with the abx??? I have been giving it to her for 3 years! Is this true!???
Posts: 73 | From USA | Registered: Jan 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- 1) "Too young to be damaged"
Not sure if you mean by lyme or by treatment.
Not at all in either regard, though. Damage can happen regardless of age. I don't know who told you that but I'd be finding more educated sources.
2) "Supplement industry just wants to make a buck"
That statement is just too huge to tackle without major qualifications. And I disagree with the premise and over reaching "verdict".
The ND Thread has been carefully and specifically compiled of top tier sources in that field. If you have interest, that's the best place to begin.
3) "Milk Thistle can cause problems"
Milk Thistle can saves lives. It can also help reduce the intensity of dangerous herxheimer reactions. It can help protect ears from ototoxic drugs.
Still, it may not necessarily be the best choice for everyone, some need a different kind of liver support - or a combination, or in rotation.
Timing matters, too. Never at the same time as any Rx. A couple hours away.
With some meds, though, such as mepron, some LLMDs suggest other kinds of liver support and timing away from mepron so that mepron does not become diminished - or work thought the body too fast - by the liver working better due to the milk thistle.
It's best if possible, to find an ILADS educated LL ND -- and if that is not possible - read all you can from that ND thread and beyond.
Most of the articles in that thread are by ILADS LLMDs, some by LL NDs.
And, in keeping with Gael's suggestions to strongly consider parasites, find a LL doctor who really knows all about this . . . or learn more on your own.
Humaworm is of excellent quality. Still, care is required with use, as with anything. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
tickedoff,
I haven't had any doctor incl LLMD for a number of yrs. I wasn't getting well after 4 yrs of abx and 2 yrs of IVIG, and that's when I started the antiparasitic herbs and salt/c.
I had SEVERE neuro symptoms incl narcolepsy. I had to write everything down and record dates and times.
There are people here that do herbs with abx and just space them several hrs apart. That's what I would suggest. Even the "best" LLMDs are not treating for parasites which I find VERY disconcerting.
Just start slow, like half the dose of Humaworm and ramp up from there. One mos is not nearly enough and tx for parasites has to be indefinite or until symptom free.
Don't know how else I can help, but if the docs aren't getting you well, it's time to look at other options.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
Keebler too young to be damaged by abx.I love her doctor but she has a lot more going on than just a co-infection or two (as most of us do)...so I really need someone who can speall out what, when in relation to herbs, abx etc. Would you mind pming me to let me know who you used?
Gael, I too have severe neuro symptoms like my daughter and Narcolepsy...that began at a young age for me. How do i do half a dose as they are in capsules? You mean take them 3 hours away from Zith, Omnicef,Malrone, GSE, Chemet (high lead)Cortef, hormones, pb and ALA, NAC? It won't react to anything in this mix? Anything else I should do? You say more than one month for sure...like how do you know when it's gone for sure?
Posts: 73 | From USA | Registered: Jan 2012
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posted
Hello tickedofftwice, it really sounds like a heartbreaking nightmare for the two of you. I am thinking: parasites and above all yeast/fungus, with the allergy for it.
The moldy environment is not helping, I am afraid. With so much abx so long, the symptoms can now be from fungus.
Read: The Yeast Syndrom or The Yeast Connection. Check out the anti fungus medication, like Diflucan to see if improvement happens overnight. Then you know you are on the right track.
-------------------- "They that are whole have no need for the physician, but they that are sick: I came not to call the righteous but sinners to repentance"(Mark 2.17) Posts: 149 | From Amsterdam | Registered: Jul 2011
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Tickedoff,
By half the dose I mean half of what the recommending starting dose is. If the starting dose is 2 capsules, then half that would be one.
You can also open the capsules and mix them in applesauce for even less if you still feel that one is too strong to begin with and then increase as tolerated.
Antiparsitics need to be taken until ALL symptoms are gone, and then a maintenance dose FOREVER as Hulda Clark suggest.
Parasites need to be addressed in order to get rid of bart, babs and bb according to Dr. K. You should call the people at Humaworm for any possible interactions.
You might want to consider seeing a Naturopathic Doctor, but only if they do ART testing and are familiar with treating parasites.
Sounds like your daughter is on a lot of meds with no progress. Loving your LLMD is not enough reason to stay there.
BTW, Humaworm alone will not eradicate a serious parasitic infestation, but it's a start. Salt/c is another avenue to pursue.
Visit lymestrategies for more info on that protocol.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
In case you never saw this, here is a site that talks about treating Hashimoto's with some supplements:
Perhaps you could try this for some help for your daughter until someone decides to try helping her with other means like prescription meds.
Posts: 9931 | From Maryland | Registered: Dec 2007
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
Manybites ..why can't kids stay on GSE?/
What a hude mess,, talk about stress How can Dad say nothing is going on with labs like that..
Mom, some how in the middle of all this you have to care for you,otherwise they'll have nothing in their corner to help..
I'm learning so many thing's about timing, seperating, suppls, meds etc...just can't understand being left on a basic one way protocol for so long...
As alsways ,,not matter what ,,NO STEROID is gas on flame... Lord bless you and keep you, make HIS face to shine upon you with favor,,peace and provision. Help her mind catch and hold the info that will help..Amen & Amen
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
One of the many things that stood out for me in glancing at her lab tests was diptheria +!!! I don't know the treatment for that, but that sounds alarming. Certainly it should be addressed.
And as TF and others have said, time for a new LLMD. The one TF mentioned would be great. she could probably cover it all. And if anything was beyond her, she would refer out.
Could you talk to a social worker about how to deal with everything you're dealing with? It's so much with what is going on health=wise for the 3 of you, plus your husband, etc. They could help you to find out where you could get help, like disability, counseling, etc.
Posts: 3792 | From around | Registered: Mar 2008
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Just read on the Nutribiotic site that it's okay to take GSE for years without any side effects.
Google "how long can you stay on grapefruit seed extract"
Scroll down to "Nutribiotic" They answer many questions about grapefruit seed extract.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
My goodness I am truly grateful and overwhelmed with all the advose. Where do I begin?
It takes me a little while to get back on because I stay running all day and night, I wish so much we had family or a husband around here because a lot of people just don't "get it".
I used to be a painter and I no longer paint because my hands are arthritic adn I have very high lead levels (with elevated mercury). My daughter has never been tested for that.
I would love to find someone that can tackle all of these different entities. Herbals, Parasites, Mercury and a teen level. I don;t care where I have to go, I just want her better so she can have at least be able to enjoy a normal college life.
I have had LLMD's that are great with abx...nit so much with supps, then I've had great ones who can handle 70% of what's going on but not be able to accurately assess the fact we both have "Hemochromatosis" (iron overload which essentially rusts organs from the inside out)
Then there is "MTHFR" gene mutation. One very smart woman said we don;t really accurately understand that and there isn;t a proven method we've doscovered.
It's like 80%, but there is always some missing link that cannot be treated.
Has anyone found this to be the case with complex Lymies? If so, where do you turn for everything?
Rumihirl that was great advise about the social worker, I didn't even think of that. Just the thought that I may be pulled from her fathers insurance and him flagging the unsurance on her condition has me in panic mode. It's good to know I have a plan "B".
Does anyone here have free insurance? And if so, what is it and do they cover a portion of your visits and some medications long term?
Thanks for checking on that Gael, you have eased my mind because I put her on it about two months ago (without doctors approval-again "Dr doesn't do suppliments and I am thinking YEAST!)
Nonna05, I can't even get him to look over anything with me. He walks out of the room (when he does come home) and says "I don't have time to look at all of that" He, obviously, is on complete denial. It took me three months and finally going in with him to the doctor to make the doctor tell him he HAD to take Thyroid medication. His mom is the same way...78 and complains about people who take medicine. Must be so nice to be so healthy!!!
TF, thank you for the link, I am going to go over it here in a few minutes
Leonardjio I have heard of the Rife's. Is it possible to get better without it? I bought a book, a long time ago by Brian Rosner. I can;t afford one but how can you get to one in our case? I am going to go to the library tomorrow and get the yeast book..it's sounds like that might be exactly what need to look into.
Again,,thank you all for continued suggestgions!
Posts: 73 | From USA | Registered: Jan 2012
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posted
Even though she is smart, MTHFR is a BIG link..I know somebody must know a good LLMD to treat that...anyone?
Posts: 73 | From USA | Registered: Jan 2012
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posted
Even though she is smart, MTHFR is a BIG link..I know somebody must know a good LLMD to treat that...anyone?
Posts: 73 | From USA | Registered: Jan 2012
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
I know of someone that knows quite a bit about MTHFR as he works with autistic children and MTHFR is huge with autistic kids.
He is in the Northeast but I don't know where you are. Let me know if you want his info.
Posts: 2541 | From Northeast | Registered: Jan 2008
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quote:Originally posted by tickedoff2wice: Leonardjio. I am going to go to the library tomorrow and get the yeast book..it's sounds like that might be exactly what need to look into.
Again,thank you all for continued suggestions!
Hello tickedofftwice, found this on another forum, to inspire: "My LLMD is an true infectious disease Dr/ Internest. He researches, publishes and also attends Lyme conferences. He works a lot at the hospital w/ AIDS patients and treats MS patients. (and yes, many of them have Lyme.) His main work is w/ immune suppressing disorders. He publishes papers on these diseases.
My LLMD is very excited about this. He said he has only most recently gotten into this research and he's been doing it for about a year.
He has found a pretty outstanding relationship between his chronic Lyme patients who are not getting well w/ treatment, and black mold poisoning. Appx 80% of his chronic Lyme patients who have been treated, but who have (not) improved have tested positive for black mold. In studies he has found that appx 57 out of 65 Lyme patients who are not experiencing improvement test positive for black mold.
We have known for years that it is extremely toxic and can make people very sick. With enough toxins, the immune system is suppressed.
Many people contract Lyme and get over it. Many, who get treated at the onset get cured. Many who get treated for late stage Lyme get better. But far more do not. So his theory is not weird, it makes sense. Some of you here get well, but many of you do not. Being poisoned w/ black mold will prevent you from getting better, even w/ treatment.
Go back in your memories, even tho most people do not recollect any black mold poisoning. This Dr has onepaitent whose job at one time was cleaning out grain elevators. He said the mold was overwhelming and he was very sick for 3 weeks. He has tested positive, so he has been poisoned by black mold for over 15 yrs now. And his lyme is not getting better.
Ok, to try to get this done briefer, it is not just old house and not just leaking roofs. He has a patient w/ a new house who did not know that water was leaking behind the wall and under the bedroom window. Flooding basements, pipes leaking behind walls, damp basements, and public buildings,as well.
A lot is not clear yet and he is still researching this and he is excited because the patients he has treated are getting well.
The bad news is that there is only one lab in the country that does this test and it is $525 and has to be sent off. He said there is only 1 reliable lab in the country who does this test, eve tho it is pretty easy. He gave me the codes so that I can call my insurance and tell them my Dr has ordered this test but that no in-network labs have this test. So there is a possibility that my/your insurance would then cover it. I will find out.
The good news is that it is a very simple and very accurate test and it is very easy to treat. (urine sample mailed off) There are no false positives. My Dr really wants to know, as he is studying all of this. He also studies the genetics involved in all immune suppressing illnesses and states that seems to be play a part. Tho typically, if a person is sick, the rest of the family is also tested and he has found family members that are sicker than the patient who has Lyme."
-------------------- "They that are whole have no need for the physician, but they that are sick: I came not to call the righteous but sinners to repentance"(Mark 2.17) Posts: 149 | From Amsterdam | Registered: Jul 2011
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