Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Lyme disease is just the tip of the iceberg for me.
Secondary conditions are starting to pile up.
Just diagnosised with diverticulosis. The pain is comparable to my I.C. bladder pain. Almost made a trip to E.R. last night, but decided my body wouldn't be able to handle any more abuse.
Add this to chronic sinusitis, vertigo, tinnititus, chronic pain and fatigue, IVIG treatments, allergies, constant blood work, sweats, diarrhea, anxiety, insomnia, depersonalizations, mycoplasma, ect, ect, ect.
No further gains since May. Only downward spiral.
I read success story threads but they are so old. Trying to remain positive, I will get better. Struggling again, whining again. So much suffering. So many people.
Is there a specialty Doctor that will look at my body as a whole individual ecosystem ? Is there even such a thing ? Do they take insurance ?
Posts: 2977 | From Florida | Registered: Nov 2016
| IP: Logged |
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
You need your specialists to work together and with your LLMD as a team. ( Include your local PCP in this team for best care.)
Chronic infections like Lyme & Co's effect whole body. So a good LLMD should be caring for not only your infections but also their negative impact on the body.
Posts: 5237 | From here | Registered: Nov 2007
| IP: Logged |
Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
Yes, biological doctors, holistic doctors, I suppose.
Here there is the approach of dr. Rau at Paracelsus clinic. A bit like dr K.
Dr. K's practitioners usually treat more holistic than most doctors.
There is the approach of dr. G (FIGHT), that looks holistic too (food, focus, infections, etc).
There is no way to treat just one condition after another when they pile up like hell.
You got to find priorities, and go sweeping one layer after another. Gut and mouth are good starting points.
I'm so sorry you're going through all this. Re-infection is hell.
Posts: 6199 | From Brussels | Registered: Oct 2007
| IP: Logged |
Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Excellent suggestions.
Dr K and Dr G too expensive.
My LLMD will treat me for most of my concerns but at added cost.
My state has a new program that I can sign up for called Health Home Services. It assigns a case manager, that oversees all your medical needs and coordinates communication between all of your providers.
It's goal is too reduce waste of duplicate testing and procedures to lower health costs. I don't believe this would be in my best interest as my conditions change rapidly and severely.
We really need an in-patient treatment center for TBI's covered by insurance companies !
Posts: 2977 | From Florida | Registered: Nov 2016
| IP: Logged |
posted
I went to a functional medicine doctor. I was already better from Lyme and co, but I knew my health was not optimal.
She looked at everything from my gut health (I had c diff and SIBO) to toxicity and hormones. Basically, she tested pretty much all bodily fluids to see what was going on.
She was not covered by insurance (some of the tests were), but it was a flat fee and I could use my HSA.
You would want a doctor like this to work with your LLMD if you want prescpription meds for the Lyme. I wanted someone who was focused on optimizing health rather than killing pathogens.
I see you're in FL. There are some good natural health docs there.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
Sorry you are struggling with things, BB. Do you ever wonder if the IVIG is making things worse? I seem to be on a downward spiral since starting my IVIG treatment.
I don't know if it is because it is making the ABX more effective and it is an almost constant herx state I am in - or if I am picking up new viruses and pathogens from the stuff they are pumping into me!
Since starting IVIG, my WBC and RBC are down, liver enzymes up. My 6 month marker is coming up and I will likely stop at that point. All I can say is I sure hope things will improve for both of us. My heart goes out to you.
Posts: 2386 | From New England | Registered: Aug 2011
| IP: Logged |
posted
I'm very sorry you are dealing with all of this. One more thing can be so very discouraging.
Your best bet is to spell it all out to your llmd and have he or she help you piece it all together and address it as it all relates to one another.
It sounds like your immune deficiency is at the heart of it all and the pathogens are down regulating your immune function even more.
I added a somewhat lyme literate naturopath into the mix for adrenals, thyroid, immune function, and while it was helpful for overall immune support because I don't want to pursue IVIG, it got confusing for anything else because with Lyme and confections there are many other contributing factors to what is happening as you know.
Years ago I also saw an immune system specialist that was ILADs trained too, at the advice of my llmd, and same thing, he ultimately wanted to treat the infections to help correct the other imbalances.
It gets redundant and expensive.
I hope you feel better and get back on top of it all soon!
-------------------- unsure445 Posts: 824 | From northeast | Registered: Jun 2008
| IP: Logged |
posted
I know research hospitals usually universities Put together teams around patients and things move quickly
and lots of ideas float around the team on how to treat patients even have group meetings every morning about individual patients . I've gone to a research hospital and witness all this firsthand It was amazing! Any major university around you? Just show up at the university's ER and if your in that bad of enough shape they will admit you!
. . But I don't know how easy it would be or if anyone had luck getting treated with Lyme with them
Maybe show them test or get Treated for all your other things!!
-------------------- . . Hi there thanks for any info Or if I could help in any way Let me know
Angie Posts: 27 | From Monterey Bay California | Registered: Jul 2017
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Forget research hospitals or any hospital in the U.S. They know nothing about lyme.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
I can't say I have no quality of life, as I have 2 functioning hours per day. Then back to bed or couch.
Pain and fatigue are BIG right now.
I have no research or teaching university near by.
Hopingandpraying praying, I went to your link and found another really good LLMD that I tried to see last year but it would have been a 6 month waiting period. So I got in with the holistic nurse practitioner from the same office.
I was treated for 6 months with herbs, silver, reki, muscle testing, essential oils, and 200 mg a day of doxy only. I responded great for 1 month and then got even sicker.
dbpei, My last 2 treatment of IVIG, I almost didn't get them because my blood pressure was so low. I had to drink fluids and wait an hour till it would come up. After I get a treatment, I get a burst of energy. But the next couple of days I m wiped out. So I ve wondered the exact same thing you have. Are we getting exposed to more viruses and bacteria. I wish I knew the answer. My original blood work showed I had no measle antibdies. Now, 6 months later, they are sky high. So that means donor IG gave me measle antibodies or I was exposed to the measles through contact and now have the measles ! The blood work doesn't differentiate between past or present infections.
Still waiting on results from second tick bite this season, which are long overdue. But I could have written wrong e-mail address because I couldn't keep my eyes open at that point.
And I was SO close to getting my mojo back. . . 💔
Posts: 2977 | From Florida | Registered: Nov 2016
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic