Tuesday I saw a integrative medicine doctor who works with a LLMD as my symptoms have not improved (except for back pain) after 45 days of antibiotics. He thinks I may also have CIRS and is wanting to test for mold, gut issues etc.
Of course this is all out of pocket and I just posted under general support because I am out of work and now financially depleted.
Has anyone else been diagnosed with this? Do you think I need all the testing? I did work in a water damaged building and had mold in my office.
Posted by Keebler (Member # 12673) on :
- Questions are just a check list. No reply needed, though, more detail would help others base their suggestions.
I'm assuming he's basing that on Shoemaker's work in "Chronic Inflammatory Response Syndrome" from Mold / Biotoxins.
I would not expect to feel better from lyme in just 6 weeks especially since you were given a steroid shot before lyme was diagnosed
[it can take many months, actually] yet, most certainly, many with lyme do also have mold and bio-toxin issues.
Are you taking more than just one antibiotic? [As lyme is a full protocol of various agents for different forms of lyme & coinfections. Antibiotics do not cover all the bases].
And have you been assessed for other tick borne infections?
It all needs to be addressed, just don't think that MOLD / BIOTOXIN illness can just negate the existence of lyme. The good news would be that if you have mold / biotoxin issues, likely, only if those are also addressed would lyme have a chance at being managed effectively because the liver detox system is just so overwhelmed.
And, if you have mold / biotoxin issues, you may be more likely to develop MCS (multiple chemical sensitivities) and, therefore, have a harder time with pharmaceuticals.
If that might be the case, you would want to explore treatment with a LL ND (naturopathic) doctor or maybe a rife machine.
Cholestyramine can be of help to many . . . but some just cannot tolerate it at all (I could not, though tried and tried -- and found better ways).
Whatever is going on, though, be certain that you have on board:
(She is NOT A LLMD, however, she understands the kind of toxicity issues faced by many with lyme. She did not have lyme but overcame very serious MCS. She spoke at the 2011 & 2012 annual ILADS conferences.)
TF has posted (2016) regarding MOLD suggestions:
Here are 2 sets of notes that I took from lyme conferences. The 2 speakers are mold experts. Perhaps they will give you some leads. I hope so.
Surviving Mold / Biotoxic Illness - website of Ritchie Shoemaker, MD -
Posted by Keebler (Member # 12673) on :
- Backing up, you state the practical matter of money not really being there and being asked to do mold tests.
If you had exposure to the degree you state, and money is low, I don't see why you can't just address it and forget the fancy testing.
I think it's always best to use common sense wisdom in matters that seem so obvious and put money on treatment for the most foundational matters while you sort it out further:
Lyme;
Liver Support.
Even just Milk Thistle or Dandelion can do a lot to help your body process metabolic waste. I'd start there. Activated Charcoal, too. Bamboo charcoal, better.
If you are out of the moldy environment, of course. For anyone still in such testing of the building would be important. I defer to NAGY's information for she is truly excellent in this field. -
Posted by bcb1200 (Member # 25745) on :
I am in the process of getting tested for Mycotoxins through Real Time Labs.
My downward spiral that started in 2015 was after I bought a moldy car (it had a leak) and got exposed to bad mold at work. I have the HLA-DR Genotypes with Multisusceptible (Dreaded) and Mold Susceptible. LLMD found Marcons in my nose.
WE are now checking for CIRS. I know several LLMD's state you won't get well unless you are free of mold. And I know a few mold docs who had patients to did have lyme, but also had mycotoxin illness / CIRS and got better once they addressed that and got out of moldy environments.
Posted by Keebler (Member # 12673) on :
From my file notes:
sixgoofykids posted 02 September, 2015
chelating heavy metals right now (again) and have started taking Takesumi for detoxification/binding.
It's amazing at binding the toxins. I felt better within a couple days. If you're having trouble detoxing, maybe finding a good binder would help.
. . . Because of the porous nature of the bamboo, it is an amazing absorber (up to 10x more so than wood treated similarly, according to many sources).
Research from Japan claims it emits far infrared rays (thus improving circulation) as well as negative ions and shields the body from EMF’s. It also is a natural source of minerals (macro and trace) and is reported to be alkalizing. . . .
. . . We are making it available in powder form. Takesumi cannot be encapsulated without adding flowing agents etc. due to its light density etc. It is tasteless and dissolves adequately in water so it is not difficult to take . . .
. . . While there is not much human medical research on the uses of Takesumi, there are studies showing how absorptive it is, and how it can bind up heavy metals.
Studies have shown it to be effective in binding mercury, lead, cadmium, and other heavy metals (1, 2, 3, 4). It has also shown to be effective at binding aflatoxins (5). . . .
. . . Contraindications:
The only possible contra-indication we know of is not to take it if you have been diagnosed with variegate porphyria.
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Posted by etb6855 (Member # 48383) on :
Thanks all! Yes he is basing his work on Shoemaker's work and identifying Chronic Inflammatory Response Syndrome which includes "Post Lyme Treatment Lyme Syndrome".
I developed symptoms of Bartonella-burning skin, painful soles of feet etc after I finished Doxy and Ceftriaxone so getting tested for that.
Posted by Keebler (Member # 12673) on :
- "Post Lyme Treatment Lyme Syndrome" is not something that a good ILADS educated LLMD would think as that's the IDSA way of denying the complexities involved in even "regular" lyme (as it's not a quick and easy thing), but more particularly denying persistent or chronic lyme.
"Post Lyme Treatment Lyme Syndrome" - if your doctor is calling it that - is a red, red flag that you have not found a true LLMD.
As for a doctor you may not be seeing - or may be reading the work of - if they call it "Post" lyme and also get into "Chronic Inflammatory Response Syndrome" then know they don't know what they are talking about in regards to lyme if they don't understand how it can be an ongoing chronic, persistent infection - IF not adequately addressed on all levels / all forms of Bb including cystic, etc. where antibiotics alone just cannot touch.
still, if they address mold issue, they can have some matter of substance in that discussion for consideration. These are some of the same mold issues that other true ILADS minded LLMDs also consider, though. So, I'd look to those who have the fuller picture for the best guidance.
For those with lyme, lyme alone can cause "Chronic Inflammatory Response Syndrome" . . . so can some of the coinfections such as babesia and bartonella, just for starters.
And, yes, of course, mold / biotoxin matters are often also involved - along for the ride or even as causes / triggers of some portion of symptoms, perhaps and vital to address but also look beyond.
It is absolutely vital that any doctor working with anyone who has lyme / TBD (tick borne disease)
consider mold / biotoxin issues
but not limit themselves to that narrow view. -
[ 09-30-2016, 03:15 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
- You might liken the diagnosis and use of CIRS ("Chronic Inflammatory Response Syndrome") to that of fibromyalgia. It's a symptom cluster that is not the actual illness but a result of something far bigger and much more complex than itself. There are usually many factors.
When lyme - or other TBD - is in the mix, no matter how many other ingredients are in there, too, such stealth should never be ignored. To do so could be to invite a lifetime of misery. There are various ways to address all this, however, and certainly mold / biotoxin issues are also in the front seat. -
[ 09-30-2016, 03:51 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
- An example of an ILADS LLMD who considers the fuller picture:
“It’s A Scandal” - Daryl Hall on Doctors Denying Chronic Lyme
By Dana Parish - Huffington Post - July 22, 2016 -
Posted by Keebler (Member # 12673) on :
- Re: the notion that some doctors have that ongoing symptoms must be "Post Lyme" -- very important detail from this article of just a few days ago about the very intricate nature of persistent lyme & other TBD:
According to Shoemaker, CIRS is caused by anything that makes biotoxins. Lyme is one. Mold is another. There are more.
Don't be freaked out by a mold doc that says "post treatment Lyme" etc. They believe in Chronic Lyme but believe many of the ongoing symptoms are due to mold and mycotoxins. Shoemaker had several cases of folks with difficult Lyme that only got well once they got out of mold. Dr C and K also say mold has to be considered and eliminated before you can fully recover from Lyme and co
Posted by etb6855 (Member # 48383) on :
Thanks to all. Again I can not say it enough about how valuable this website is.