posted
My teen daughter has been trying to fight vasculitis for 4 1/2 years. 1 1/2 years ago we found out she also has RMSF and Borrelia plus coinfections. We are on about our 18th doctor overall and nothing seems to help.
We are seeking a functional/integrative doctor, using mainly natural remedies.
Tired of IV's, antibiotics aren't working, I.ver. didn't seem to help. LDN, etc. It feels like we have tried everything.
No one knows anything about vasculitis, so it's hard.
We are in the Midwest, but willing to travel.
Does anyone have experience with Dr. G in K.C. or Dr. C. in PA? We tried Dr. Y in MO and some lesser knowns...
-------------------- Ton Mc Posts: 11 | From IA | Registered: Oct 2022
| IP: Logged |
Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Welcome to LymeNet Ton Mc
So very sorry to hear about your daughter, heartbreaking ❤️
I do not recognize any of the doctors you posted. Are they LLMD’s ? (Lyme Literate Medical Doctors) .
Please utilize LymeNet’s search function. There are SO MANY posts about vasculitis!
posted
Thank you. I searched vasculitis but didn't find anything.
Dr. Y is in St. Louis, not LLMD but treats Lyme and cancers, hard stuff... Dr. G just got married, LLMD in Kansas. EVERYONE tells us they can treat vasculitis and then just give up after we've spent thousands...
I will try to search for vasculitis again. We really want to try herbal remedies like Buhner, but with Doctor's supervision.
-------------------- Ton Mc Posts: 11 | From IA | Registered: Oct 2022
| IP: Logged |
Has your daughter been treated for Lyme Disease at all? You mentioned "RMSF & Borrelia plus co-infections". RMSF is a co-infection of Lyme Disease.
Lyme can cause all sorts of problems in the body, inflammation being a huge factor! I think you need to focus on addressing Lyme and co-infections asap.
Posts: 9020 | From Illinois | Registered: May 2006
| IP: Logged |
Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Check your spelling and search the medical forum. There are 18 pages and 342 entries for vascullitis.
My search; You searched for keywords: 'vasculitis' | 342 matches found | Pages: 1 2 34 ... 16 17 18
Topic RMSF and vasculitis Bartonella & Vasculitis Bartonella Linked To More Skin & Vasculitis Manifestations What does this sound like? Lonq-term Flagyl & Vascular/Vasculitis Chigger bites: could they be infected? Question about changes in skin Need help with skin issues.please! Autoimmune Diseases: Any Reversals? Hexing vs antibiotics reaction I need an MRI. The Microscopy Thread Heart and circulation doctors -- who do I talk to? Bryan Rosner needs your help Should I ask for another MRI/EKG? Bactrim (Sulfa) allergy checking Thoughts on BVT Rheumatoid Arthritis vs. Lyme Disease bartonella-bactrim Holy Herx!???
And lots more pages. . .
Posts: 3221 | From Florida | Registered: Nov 2016
| IP: Logged |
posted
Thank you for Dr. C of Missouri. It seemed like he was using more antibiotics, but I'll check into him further.
-------------------- Ton Mc Posts: 11 | From IA | Registered: Oct 2022
| IP: Logged |
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
sorry you have to go through al lthis with your daughter.
can I ask- what are her symptoms and how did you get the diagnosis of vasculitis if no drs near you know much about it?
I suspected I have it but no dr. will wil say yes.
but I have been diagnosed with "microvascular angina"
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3592 | From Eastern USA | Registered: Jul 2013
| IP: Logged |
My daughter was diagnosed with vasculitis by a deep biopsy. It was confirmed by three labs looking at the biopsy. She has leg ulcerations on her lower legs, ankles, and feet.
Conventional doctors do not look for a cure, but to cover up the symptoms with highly dangerous drugs. As a teenager, she will certainly develop further complications or cancer by beginning chemotherapy drugs. So, we are seeking a cure, which I still believe we can find.
-------------------- Ton Mc Posts: 11 | From IA | Registered: Oct 2022
| IP: Logged |
posted
Consider energy medicine. It completely healed me from lyme. I tried everything conventional medicine gave me that I could handle, and all sorts of other things. I never realized that attacking the source (pathogens) with energy would work until it did. The bugs just couldn't take it. It worked so well that I now practice and teach it. I guess it took me trying everything for me to open my mind to it, but I am so thankful I did.
-------------------- Remember to keep an open mind Posts: 84 | From earth | Registered: Mar 2019
| IP: Logged |
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
Ton Mc, any update on your daughter?
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3592 | From Eastern USA | Registered: Jul 2013
| IP: Logged |
quote:Originally posted by LisaK: Ton Mc, any update on your daughter?
We have found that she has Liveoid Vasculopathy, a blood clotting disorder, rather than vasculitis. Blood thinners (Lovenox)are helping, but we are trying to find a functional doctor to help eliminate the thick blood.
-------------------- Ton Mc Posts: 11 | From IA | Registered: Oct 2022
| IP: Logged |
Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Ton Mc,
Please consider hyperbaric oxygen for your daughter's Liveoid Vasculopathy and Chronic Lyme Disease:
I have extensive personal experience and success with hyperbaric and will be happy to discuss it with you. Just PM me if you're interested.
Posts: 2083 | From Earth | Registered: Jul 2013
| IP: Logged |
posted
Thank you, Phoiph. I just sent you a PM. The wound doctor sent in a request for HBOT nearly two weeks ago. We are waiting on insurance approval, although they declined it previously.
-------------------- Ton Mc Posts: 11 | From IA | Registered: Oct 2022
| IP: Logged |
Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Ton Mc,
I just replied to your PM.
Posts: 2083 | From Earth | Registered: Jul 2013
| IP: Logged |
kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
As I was reading down the post, I thought to myself mild hyperbaric oxygen!! It was a game changer for my health and life long chronic Lyme. I wish that I had known of it sooner. It would have save us time and a lot of money not paying for expensive physicians, antibiotics and supplements.
You are in good hands with Phoiph!
Posts: 1856 | From Maine | Registered: Jun 2004
| IP: Logged |
Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Awww, thank you, kgg.
I sure wish I had known of it earlier, too! But so grateful for the last 10 years of wellness thanks to mHBOT.
I never thought I could recover, and am so happy it has been a game changer for you as well :)
Posts: 2083 | From Earth | Registered: Jul 2013
| IP: Logged |
posted
I haven't personally heard about Dr. G or Dr. C, but exploring functional/integrative medicine sounds like a solid move. Have you considered getting in touch with local support groups or online communities?
Posts: 8 | From United States | Registered: Dec 2023
| IP: Logged |
posted
We visit Cleveland Clinic Functional Medicine next month and hope to come up with some new ideas. HBOT definitely helped, but I don't think it will be a permanent solution. Lovenox definitely helps, but high dose, and don't want to continue for life. Thinking about an antiviral, such as acyclovir? Thinking about something like Methelene blue? Hoping Cleveland Clinic will point us in the right direction...
-------------------- Ton Mc Posts: 11 | From IA | Registered: Oct 2022
| IP: Logged |
Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
TonMc,
Hyperbaric takes many "dives" for chronic issues, usually beyond what is initially prescribed by a clinician. That is why many choose to continue their treatment with a home chamber.
If I had given up after a month or two (which I almost did), I would not be well today.
It is a marathon, not a sprint...but deep healing takes time!
Posts: 2083 | From Earth | Registered: Jul 2013
| IP: Logged |
Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
Hello,
I am so sorry to hear of all that your daughter has been through, has she ever been tested for Babesia, its a disease that affects the blood.
-------------------- God Bless You! Everything..is just my opinion. Posts: 6641 | From Michigan | Registered: Jun 2001
| IP: Logged |
posted
Beverly, Thank you for your input. She was tested and was negative at the Cleveland Clinic Functional Medicine Department. We are seeing a new Lyme doctor in May. I'm praying for answers and healing. We will be focusing on infection.
-------------------- Ton Mc Posts: 11 | From IA | Registered: Oct 2022
| IP: Logged |
Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
Hello, I do not know anything about the Cleveland Clinic or what kind of blood tests they do, I had mine done through IGeneX which is a certain kind of blood smear not an antibody test. Antibody tests can be very deceiving, it depends on how the immune system is functioning.
Even a Lyme antibody test is almost useless if the person has been sick a long time, because the immune system shuts down.
It is good she is seeing a LLMD in May, they know how to read the tests. He/She will look at the whole picture.
-------------------- God Bless You! Everything..is just my opinion. Posts: 6641 | From Michigan | Registered: Jun 2001
| 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!
![[Frown]](frown.gif)
Printer-friendly view of this topic