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...
Posted by Bartenderbonnie (Member # 49177) on :
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!
Have you tried the best of the Midwest? Dr C in Missouri.
Posted by Ton Mc (Member # 52653) on :
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.
Posted by hopingandpraying (Member # 9256) on :
Welcome to LymeNet!
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.
Posted by Bartenderbonnie (Member # 49177) on :
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. . .
Posted by Ton Mc (Member # 52653) on :
Thank you. I wasn't seeing the search pages. I found them and will take a look.
Posted by Lymetoo (Member # 743) on :
Dr C of Missouri.
Posted by Ton Mc (Member # 52653) on :
Thank you for Dr. C of Missouri. It seemed like he was using more antibiotics, but I'll check into him further.
Posted by LisaK (Member # 41384) on :
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"
Posted by Ton Mc (Member # 52653) on :
LisaK
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.
Posted by hopingandpraying (Member # 9256) on :
With the right doc (and that is the key!), she will get better!
Posted by Catgirl2.0 (Member # 51843) on :
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.
Posted by LisaK (Member # 41384) on :
Ton Mc, any update on your daughter?
Posted by Ton Mc (Member # 52653) on :
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.
Posted by Phoiph (Member # 41238) on :
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.
Posted by Ton Mc (Member # 52653) on :
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.
Posted by Phoiph (Member # 41238) on :
Ton Mc,
I just replied to your PM.
Posted by kgg (Member # 5867) on :
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!
Posted by Phoiph (Member # 41238) on :
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 :)
Posted by awflashes (Member # 52785) on :
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?
Posted by Ton Mc (Member # 52653) on :
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...
Posted by Phoiph (Member # 41238) on :
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!
Posted by Beverly (Member # 1271) on :
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.
Posted by Ton Mc (Member # 52653) on :
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.
Posted by Beverly (Member # 1271) on :
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.
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