I'm in need of an LLMD in the Bay Area of California, preferably South (or East) Bay. Your help is most appreciated!~
I'm a 47 yr old woman. Been mysteriously ill and periodically bedridden for over 20 years, dx'd with chronic regional pain syndrome, chronic fatigue (EBV), and fibromyalgia. A year ago pericarditis (fluid around heart) and sepsis (multiple organ) that responded to IV vancomycin despite no pathogen being found.
I can't seem to get adequate testing.... I used to think that if I ever got Really sick, Then the Dr's will figure it all out, but, well, you know. It went from, 'you're not that sick' to 'unfortunately, your condition is chronic'... I can't believe anyone has to go through all this in this day and age. I am so grateful to all the posts that let me know I'm not alone in this, thank you.
3 years ago I got a series of UTI and vaginal strep B infections. Within a week, breathing was a strain, and despite the continuous double dose of oral Amoxicillin, I've been rather ill since, with several near (enough for me!) death experiences. I recently had my 3rd round of IV vancomycin treatments. So difficult to obtain and/or go without.
I need to treat the underlying disease that I think made me prone to the GBS infections, and I'm pretty sure it's lyme. The brain fog is sooo thick, I've felt paralyzed by complex projects, like finding an LLMD. Ideally I am only on the mend from here, but a priority for me at present is to find an LLMD who is open to doing vancomycin treatment if need be.
I keep tracing my illness(es) back... 8 years ago I had sudden agonizing pain develop around an IUD; although no pathogen could be found, my uterus was a spongy blob when removed a year later. The pain, ie infection, has been spreading and progressing. It especially settled into my hips and as fibromyalgia.
20+ years ago I had a birth control implant in my arm that gave me the same type of pain- I'm convinced the same pathogen(s) thrived on both implants. Same lethargy, brain fog, stiff neck/pain, nausea, flu like sx.. we did a lumbar puncture, but no finds. Brain MRI's keep showing multiple lesions. Been a pain patient since.
Prior to this I tried to remove a tick but the head got stuck. I had a bull's eye rash but didn't go to a Dr. Lyme was 'new' to my family- we didn't know. I just toughed out the slight illness.
I also had what I was told was 'kindof' scarlet fever. Again, I wasn't terribly ill at the time, although I was hospitalized briefly and strongly encouraged to take antibiotics which my parents declined. My sister died of illness at age 4, and it's possible that what I had was the same illness. Her pathogen also was never identified.
I am in the kind of pain that can only be managed with opiates- it seems bacterial and/or parasitic in nature. Although I've felt it migrate through my body to specific places, it's everywhere now. It's especially in my hips and they Always hurt bilaterally- as if the level of infection in my body fluctuates overall.
It eating away at me is evidenced by lesions on my organs and elevated kidney and liver numbers. My adrenal system seemed to go into sudden medical menopause. I recently started HRT, thank GOD that got figured out bc the sx were scary on the heals of heart failure (which is significantly resolved a year now, yay)
Over the years I've had about half a dozen courses of the disease coming on strong within a few days and weeks- followed by months and years in a tedious road to recovery. Stress is a big trigger. Lots of nuero sx.
I'm gluten, caffeine and sugar free. I think I've tried just about everything. Recently I found that boric acid vaginally is very helpful and I wish I had tried it sooner- may have been enough back then. I'm optomistic about iodine drops. ABX have been lifesaving. Have tried several Buhner herbs. I have put a deposit on IGenX testing.
Past couple years I get ALOT of... could be the infection progressing, reactions to medication, kidney weakness and/or herxing. I usually feel better after, but woof. It feels like I have a sun burn on the inside of my skin. Itchy burn all over my back and backs of arms, buttocks...
OK, well, I usually just lurk around, but I got going with my story. In short, sure appreciate some guidence towards the light. The one here we all sense. *hugs*
Posts: 4 | From Nor Cal | Registered: Nov 2017
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Welcome to Lymenet SCIGal
So sorry to hear about your long journey. You are quite strong to go through all of that. Yet you still don't have answers. You NEED answers !
Because mainstream doctors are evidence based, they require a positive western blot Lyme test in order for a diagnosis of Lyme disease. Probably one of your many doctors through the years, have ordered a Lyme test. Unfortunately, they rely on faulty testing, at best, a Lyme western blot is 50 / 50, a coin toss.
This is where a LLMD is worth their weight in gold. They specialize in Tick Borne Infections and that's what you need, a SPECiALIST ! You will get answers !
You can request a LLMD through Global Lyme Alliance here;
Please feel free to utilize Lymenet's search function. Many members post their experiences with different treatments and protocols which is so helpful to others who daily battle this beast.
It will be a long journey, with many, many ups and downs. You can get better ! We wish you healing prayers and will help you anyway we can. Posts: 2977 | From Florida | Registered: Nov 2016
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Also, you state "Over the years, I've had about a half dozen courses of disease."
I would suggest you make an appointment with an allergist / immunologist and get tested for immune system function / disfunction. This involves a simple blood test for your IGG subclasses 1 - 4. It will be insured covered.
This is my journey towards getting approved for IVIG.
I was told by my LLMD, that I would never get better without IVIG because of my hypogammaglobinemia immune disfunction. No amount of antibiotics would help without a properly functioning immune system. I also take many supplements that target immune support.
I experienced many differnt infections throughout life, like you. Doctors would just throw antibiotics and steroids my way. I would feel so much better then crash, like you.
Finally, a new primary doctor, wondered why I was always so sick and tested my immune function. Pay dirt, I got my answer.
One more thing. . . ALL the top LLMD's say steroids are a big NO NO for Lyme patients.
posted
Hello BartenerBonnie! (-And Robin123, who I will respond to separately) Thank you for so much information and there's nothing better than personal welcome(s).
I had to rest a couple days. I have to 'tunnel vision' my efforts to keep from getting lost to analysis paralysis.
Thank You for the website you mentioned separately for LLMD's; perfect, this elusive list is just what I've needed. I picked up another from the Global Alliance list too.
Maybe an LLMD diagnosis can help me garner some short term family support. Especially if the wait to establish an LLMD is significant, I'm going to need to get the lyme and coinfections testing going through a current Dr if this is at all plausible.
I have an IGenex lab test form, but it's got about 50 options. Globallymealliance lists a dozen or so coinfections to test for, but translation isn't easy to decipher and I doubt any of my Dr's can do this better than an experienced patient can. Any advice on the best approach for a DIY effort to get this ball rolling? I want to know what I'm wrestling with asap for multiple reasons.
I recently heard I may have an immune dysfunction and hopefully the LLMD will do all the needed tests- I'll try to get the IGG 1-4 tests you recommend, thank you. I also have 1st hand experience where I was promised a miracle with steroids and I felt like I got hit by a bus, so I agree- this is more infection and less autoimmune, for sure.
Anybody who can help with identifying the types of IGEnex tests to start with.... If there isn't a way for me to post a photo of the form, then I could list out some of it. I had a deer tick in California 30 -yes 30- years ago and have been taking amoxicillin for 3 years now. Not sure how that would affect test selection- probably less culture focused. Would it show as a recent acute infection after having harbored it all these years?
I don't see strep on the form; I was hoping to test for it, mycoplasma, and any other thing that tends to occur with lyme. Oh, I do see c. pneumonia on the list tho... would the IgG or IgA test be a better option?
If anyone's willing to help me make some educated guesses, I can spell out the options better. Most appreciated!
Posts: 4 | From Nor Cal | Registered: Nov 2017
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
This is the number # 1 obstacle Lyme patients experience !
Why is there NO insurance covered, CDC approved, accurate Lyme and Tick Borne Infection panel test ?
Before I got Lyme, I would have thought this would be inconceivable, in this day of modern medicine. But this the reality. Many very sick patients have had every test under the sun, the results all normal. Why is there NO evidence ?
The answer lies in outdated and faulty testing. IF YOU TEST NEGATIVE ON THE STANDARD CDC APPROVED WESTERN BLOT! THIS DOES NOT MEAN YOU DONT HAVE LYME DISEASE !!!!
Collect all blood tests results, mri's, other medical producures, list of all medical providers, any hospital visits, all meds, symptoms, place in large canvas carrying bag. Lyme patients have cognitive disabilities, so everything in one place helps remember your journey to convey to your doctor. Start a journal. Write down EVERYTHING. So important to document EVERYTHING.
Lyme is expensive. Save money in ALL areas. Any medical tests that can be ordered through mainstream doctors, do it. Your immune panel can be prescriped by your primary. Also, why not get another western blot. Some LLMD's will clinically diagnosis Lyme based on the bands that show up reactive. Certain bands are specific to Lyme.
In order to get the very best outcomes on western blots, many patients stop all antibiotics a few weeks before blood work. This makes the spiroketes come out of hiding and back into the blood stream. Also, stop all probiotics. Take a hot shower in the morning. Also get test in the beginning of the week so test doesn't sit around. Dry skin brushing or jumping on a mini trampoline will help move spiroketes out of lymph nodes.
I did not have IGENex tests. I simply didn't have the money. I sure would have LOVED to have a piece of paper proving I did ! But that did not stop me from being diagnosised and recieving treatment for TBI's.
CDC says Lyme is a clinical diagnosis.
I live in an epidemic area, 80% of ticks tested positive from Lyme. I own dogs and cats. 2 documented cases of bartonella. 1st time, ER staff diagnosised me by looking at my arm, no blood test, hooked me up to IV antibiotics, then proceeded to yell at me for delaying treatment. 3 out of 5 bands on western blot, which is a miracle because my immune system produces no antibodies ( CVID) Every symptom of Neuroborrellis. 3 years and 19 doctors, I joined Lymenet, got LLMD, slowly getting better.
I hope other members who have had testing done through IGENex will respond. I do know that LLMD's like to order specific tests that they have found to be the most helpful in their practice, so you might want to hold off on ordering for now.
Just my opinion. . . Hope this helps.
Posts: 2977 | From Florida | Registered: Nov 2016
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posted
Yes it helps. I appreciate the 1:1 bc I keep going this alone, and not going enough. This week I will make an apt with an LLMD. It's hard to imagine getting chastised for not getting treatment when I've begged for all I've gotten, usually on an emergency basis. Although I'm well educated and used to be well off, I'm stuck in low income medical care and, it's just not the same; I feel like they think I'm anything but actually physically sick. There is no getting support for Lyme from my regular Dr's bc one test came out negative and the other went missing, as I have found the positive/important tests sometimes do (I have medical stories I would not have believed if I hadn't experienced them myself)
I hope to post a thread about the skin burning bc I ought to get it figured out whether it's helping or hurting to take meds/suppliments that exasperate it. It feels like... when I up my Abx or take burhner herbs, that it pisses off the microbiome and they are letting off toxins in self defense. But they are quite a force. I need to take oral abx every day just to breathe; I only get a few days w/o before I feel like I'm dying, and worse- it takes several days to recover again with generous treatment. Over time it's not enough and every 6 months I'm groveling for IV vancomycin. I need to get ahead of all this and blow these buggers out of the water. It would be bad if they are getting more resilient with my every effort.
Burner says to treat the coinfect's first, and strep B is what almost killed me and needs much more treatment than I'm getting. But I only recently found buhrner recommendation for: Echinacea Angustifolia and cryptolepis. Tried for 1 week now. I think the burn= herx and I should give it full strength try. Been laying at low amounts a week now so I could have strength to do these posts, find an LLMD, and go to a gastroenterologist appt Monday.
Come Tues, I'm going to herx out a while and see if I can get this party started, LLMD / more tests or not!
Posts: 4 | From Nor Cal | Registered: Nov 2017
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