kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
Hey everyone!
I haven't been on in quite some time... I am still dealing with the Chronic Lyme and coinfections.
I felt it necessary to post because I know some of you remember me and for 6 years I have been dealing with SEVERE anxiety along with the everyday sickness from the Lyme.
I just wanted to quickly update you on my status. Since I have last been on here I have had a port and 2 picc lines along with many trips to the ER.
My 6 yr old son is doing MUCH better after his treatment and is excelling in the 1st grade.
my wife will give birth to our daughter in April and is the backbone of the family.
With all that said, I have been struggling with Agoraphobia and severe panic attacks since I found out I had Lyme.
They have gotten so bad I cannot travel within a 20 min radius from my house.
As you can imagine it is quite tough to sit there and feel like you are letting your family down by not being able to attend any social gatherings.
I have been on pretty much ALL of the medications and I saw a therapist for 3 years which did absolutley nothing.
Bottom line and I am sorry this is drawn out, I was curious if anyone has had the same issues and if so what helped?
Once again thanks to all that have made this site what it is and the help they give us everytime we need it.
- Roy
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Just because you have trouble going out does not mean you have agoraphobia. Not at all.
Still, the goal is to be able to go out and feel grounded and nice about being out, I know.
I've not been able to go into a public place in many years but I do not have agoraphobia. I also don't do well in most friends' homes due to various elements.
I've never been able to actually treat as best so don't let my inability to overcome this discourage you. But I've sure learned WHY this can happen and sure learned all I can about what can help (even if I can't really address all the issue adequately).
I can help with explaining what happens and what can help but bottom line
When infections are properly addressed, the issue you describe usually melt away for most. Really.
Along the way, certain support is required. And that can take a lot of tweaking and patience. And heartache (so much heartache, I know).
Agoraphobia is often assumed but "misdiagnosed" in those with vestibular issues and also for those who are ill.
If you had the flu, would you feel like going out? No. So, why with lyme do we assume all should be as normal, then?
Maybe because most doctors (probably even that therapist you saw for 3 years) are not adequately educated. Probably because society in general has not accepted chronic lyme so we trudge on, thinking we can fake it till we make it.
But it's not that easy.
Anxiety is also often "misdiagnosed" when vestiublar issue are the real cause. Vestibular: inner / middle ear / balance.
Toxins create vestibular issues but lyme can also stress the vestibular system in many ways.
Avoid all fluorescent lights, those low energy kinds can all kinds of havoc and lead to an "anxiety" attack due to the neuro and vestibular stress.
Anxiety is also "misinterpreted" for those with lyme and the severe adrenal, cardiac and neurological issues that accompany it and other chronic stealth infections.
Liver dysfunction, damage and stress that with lyme & co. also cause all shades of anxiety. The neurotoxins cause a lot of trouble but it's not the kind of anxiety -- or rather not pyschological in cause, just in effect.
Be very careful when telling those who barely understand lyme at all about "agoraphobia" or even "anxiety" as it's not at all what the terms imply.
If that therapist whom you saw for 3 years is not ILADS educated and LL, they did you no favor. IMO, ONLY one who is ILADS "educated" and LL will do. ONLY.
It's so much more complex.
And there are things that help.
Treat infections & Support liver, adrenals, heart, nerve fibers.
Address parasites and heavy metals.
Be sure to eat enough - and lots of greens.
Back with practical links. (But I have to rest first.)
Are you taking good support for:
liver
adrenals (with Lyme-Induced Addisons Disease, that explains A LOT and very special care is required).
nerve fibers (magnesium, fish oil -
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Can you switch to a different LLMD? -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Note that everyone can be from any tick infection, parasites, heavy metal toxicity, etc.
Multiple chemical sensitivities, too, can affect the ear system.
These symptoms can also also indicate other structural issues that may be independent of all that. If you check out a lot on that list, ask your LLMD for a referral to a NEUROTOLOGIST (neuro-otologist), one who would be lyme familiar, at least.
An ENT is not as well trained in the neuro matters.
Topic: what do STEROIDS actually do to those with lyme?
I would assume that, with Addison's and lyme, your LLMD has very specific adrenal support for you. Just the BASICS are here but, maybe, something that will help:
Topic: To everyone with CARDIAC symptoms please read!
Includes articles & discussion about exercise safety & methods
MITOCHONDRIA, MYELIN & ADRENAL SUPPORT - and how these can help in various ways. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I'm sorry for tossing so much out here. Any good LLMD should have covered all this so, if yours has, and you know all this and have addressed the supports required and still have not seen any help,
you might really consider getting a better doctor who can better address this. Even if it takes a while to address the infections, you should have more tools than I'm guessing you have to manage and make life a bit more tolerable.
Also know that many psychiatric, mood or sleep drugs can CAUSE panic attacks and anxiety.
This is due partly to the toxic stress on the liver, particularly if PORPHYRIA is involved.
Good luck. And take care. -
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- One more thing that any good doctor should have ruled out (can have genetic links but also can be caused by certain medicines, etc).
This can cause "panic attacks" and would need professional assessment.
If you feel as if you might faint, this is really important to consider.
Mother's call for heart screening -
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Again, a category that any good LLMD should have addressed and I assume you are not eating ANY processed foods but, just in case something has slipped by, know that
food additives can CAUSE anxiety and panic attacks (especially in those with lyme complex):
Excitotoxins; MSG; Aspartame; & "Natural" Flavors; -
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
Keebler,
Thanks so much for all this helpful information. I am currently on Workers Compensation and cannot see an LLMD.
Yes, you are correct, I probably am not getting the proper care regarding the steriods and such for the Lyme- induced Addisons Disease, let alone treatment for my Lyme and CO's.
I cannot afford to see an LLMD and if I was able to I would then get dropped from Workers Compensation and have no monthly income to support my family.... a catch 22 situation...
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Sorry. That explains a lot. Still, there are some things that may be within your reach.
1. THYROID - be sure your regular doctor checks that but first read about the tests to request.
Thyroid dysfunction can CAUSE anxiety and panic attacks.
If you happen to be taking CYTOMEL (just T3), that nearly did me in from the horrible anxiety it caused. Be mindful of that. Now there is supposed to be a time-released version but the one I took would drop me like a rock when it wore off.
& Adrenal support
Be sure to study the adrenal thread for a few things you can do yourself. If you can only afford ONE supplement, start with Ashwaganda, perhaps.
But get Wilson's book from the library, too.
2. Heart
You should still consider the heart screening for QT syndrome. Ask your area lyme support groups for any good cardiologists who may be on your insurance plan and won't kick you out for mentioning that you deal with lyme.
They need not know all about lyme but, if possible, it's best to find one who is at least lyme friendly.
If that's not possible, at least get to a cardiologist who is open and caring and very wise
IF you have startle reactions or fainting.
Not everything is lyme (although lyme can be the connector). Do you have any blood relatives (or ancestors) who fainted? Any with seizures or startles?
3. Ear system
You should still be able to get a good vestibular assessment. See if you can find a lyme-friendly ENT for a start - ask if there might be any structural considerations going on if you have any of those symptoms.
But Magnesium and antioxidants can help reduce swelling in the ears. Avoid gluten, dairy, corn and soy can also decrease inflammation and, thereby, reduce anxiety when the ears are involved.
4. FISH OIL is excellent to reduce anxiety. And EAT SARDINES from a good source.
WILD PLANET SARDINES are the cleanest source I've found. Ask your store to carry them and seek out the sales.
NYC Taxi drivers that had wanted to clobber irritating customers were calm as could be after just one week taking fish oil. Really.
Topic: RIFE Machine - Reference LINKS -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- One thing else and then I'm done, promise.
The nerves in the spine, if constricted or getting undue pressure, can cause anxiety.
IF you might have some cranial sacral issues, your insurance may cover cranial sacral therapy -- but it should ONLY be a very gentle technique. Never sudden twists or turns of the neck or spine.
UPLEDGER approach is safe for us.
UPLEDGER INSTITUTE site has a "find a practitioner" link and one be on your insurance plan. -
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
Keebler,
Thanks again for the information. The current doctor I am seeing is probably the best I am going to get for the time being.
For the Addisons Disease he has me on Hydrocortosone which I think is causing major issues.
I asked him to taper the dose down to the bare minimum without causing more problems and thats what he did.
He also has me on a variety of Benzodiazepines to help with anxiety. but I have been on them so long it really doesn't seem to make a difference.
Along with those Coreg, Ferratin, Ambien , Mepron and Zithro.
I appreciate all the useful information.
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
| IP: Logged |
kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
As far as a support group in the area we used to run one, but after a while I became to sick to help run the group.
I will ask around to see about the RIFE machine. Any luck in Acupuncture and Hyperbaric chamberss? I have heard mixed results.. also being confined doesn't suit me well...
Thanks again!
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- If porphyria is involved, Benzodiazepines can cause panic attacks. The liver of a person with lyme is not usually very good at metabolizing Benzodiazepines. I could not tolerate even a tiny dose of any of them.
If you don't notice that they help, it may be of help to wean off of them. In the Sleep & Adrenal thread, there are some calming suggestions. -
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MannaMe
Frequent Contributor (1K+ posts)
Member # 33330
posted
My husband finds Relora helps with anxiety.
He also says the Adrenal C from James Wilson seems to help keep him on a more even keel.
He was on Lorazepam for anxiety - it did help tone it down but didn't take it away. He weaned off of it and has been off for two years now.
Posts: 2251 | From USA | Registered: Aug 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- This just came up in another thread and I think it's important detail that may be help to others:
[someone very ill with lyme remarked that during a vestibular attack with lyme playing havoc with their world that]
"Words looked like shapes"
That sort of thing can also be a kind of dyslexia that can be in response to toxicity levels and inner/middle ear inflammation, etc.
"Words looked like shapes" may not have been hallucinations but just the way the brain's deciphering system is put topsy turvey with the kind of vestibular attack you describe.
When I went to an art museum years ago to see a huge display of Chinese Clay Soldiers when I rounded the door, the light change was so sudden and dramatic that my vision just flipped and I was seeing these larger than life clay statutes from centuries before nearly standing on their heads.
Then I went down with a spin but had no idea how to get back up again - or which way was up. Security loved that. Embarrassment quotient to the moon.
Similar thing during an earthquake, the whole room looked like Jell-O. The way the brain interprets shapes, symbols, words, letters, numbers - doorways - when the inner ear is affected can be all over the map.
Even with reading, I've had whole sentences fly off the page and bounce back again, as if controlled by a rubber band.
The kind of NYSTAGMUS that can go with vestibular disorders - and with lyme, itself - can do this, too. Magnesium can help sometimes as nystagmus is often a sign of toxicity (and we all know that sure goes with lyme). the magnesium can also help the eyes not spasm so. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
SUPERIOR CANAL DEHISCENCE SYNDROME - Johns Hopkins
While JH, as the institution, has been terrible regarding lyme disease, one department and a few of their vestibular researchers have been excellent in the discovery & understand of, and treatment of SCD.
Good images here that really help "picture" the inner / middle ear
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