I just resently tried a nutritional therapy/acupuncture dr. I really would like to see if any one has gone to one of these type drs and found relief.
He performed a Nutrition Response Test and found that I have borrelia burgdorferi infection(lyme disease) and Ehrlichia co-infection.
It also said that the part of my body that needs to heal first are my adrenal glands and kidneys then liver. So he came up with this list of "supplements" that my body was needing.
I don't know if i want to go through with buying all these supplements without knowing more. Has anyone had any luck or even tried something similar?
Here is some back ground on my issues.
Long story short I have been in a two year battle of finding a diagnosis and something just to help me deal.
What we know, I have some kind of inflammation causer, autoimmune reactions, pleurisy, sun sensitivity and heart involvement.
I have tested positive IGENEX/CDC IGM, Positive IGENEX IGG Negative by one band CDC IGG
Rheumatologist pretty positive I have Lupus possibly triggered by lyme disease.
I've been on Plaquenil for two years, tried steriods for two weeks. In that two weeks I ended up in the hospital with pleurisy.
I tried antibiotics for 3months, then doubled the dose for 3 more months. Did nothing.
I have had one naturopathic LLMD stating I DO have lyme. A CDC infectious disease say No you dont. Of course.
My rheumy wants to move forward with another round of steriods and then immuno suppressants. I am weary of such a drastic move without an official diagnosis.
I know lyme mimics lupus, but my father and sister both have what i have, but very toned down without large outbreaks. Rashes (normal and malar) and fatigue from sun exposure, muscle and joint pain.
Welcome to medhelp Lyme --- sorry to hear all that you are going through.
I think you are asking the right questions and rightly trying to take charge of your health, esp. given the contradictory information you are getting.
From your post, it sounds like you are already quite aware of the controversy in the medical community about Lyme diagnosis and treatment.
There are a number of people who have showed up here on this site having been told that their Lyme is cured and the remaining symptoms are an auto-immune reaction that is left over from the Lyme infection. Lupus is an auto-immune disease. Steroids are used to treat auto-immune diseases, by suppressing the immune system.
The problem is: Lyme is a bacterial infection (and so is Ehrlichiosis), and your immune system needs to be active to fight the bacteria. There are others who post here who were also given steroids, and for them it was the wrong thing to do, judging by what they have posted here.
Rheumatologists and infectious disease (ID) docs were the first ones to identify Lyme as a spreading problem several decades ago, based on sore knee joints in many patients (thus rheumatology got interested) and based on a tick bite and the legendary circular red rash (thus ID docs got interested.) The IDSA [Infectious Disease Society of America] decreed that a couple weeks of antibiotics was enough to cure the infections, and any persistence symptoms were ... autoimmune.
The IDSA has not budged from that approach in the intervening years. Unfortunately the IDSA are considered the experts, so many docs look to them to set the standard. But what if they are wrong!? That's where we are right now.
I am NOT medically trained, but in your situation I would NOT take steroids.
I also do not buy the supposed autoimmune reaction (thus lupus) your rheumy is proposing.
Your father and sister may not have the same coinfection(s) you do, and everyone's immune system reacts differently to Lyme and coinfections. (I got VERY ill with Lyme and babesiosis, and another family member turned out to have those same infections but was only mildly tired. Everyone is different.)
Whichever doc it was that tested you with IGeneX tests sounds promising. It takes a broad mind for a doc to order those. I can't tell tho which doc this was. Is it 'Dr Supplements'?
I haven't taken Plaquenil -- my Lyme doc did not prescribe it. I was prescribed doxycycline for Lyme and Ehrlichiosis. There are different treatments favored by different Lyme docs, because this is a fast-developing area of medicine. ILADS [dot] org is the group for progressive Lyme docs. If you go there to the tab 'about Lyme' and then to 'Dr Burrascano's Diagnostic Hints and Treatment Guidelines, it may give you some helpful insight. On the other hand, it may just seem overwhelming.
My Lyme doc is a great believer in antibiotics, and they worked for sure, but I had to go find another doc who has me on a bunch of supplements because my body was so trashed by the illnesses and then the treatment. My Lyme doc seems to have a blind spot when it comes to supplements, but at least understands the diseases themselves.
So now I am seeing a very wise doc who understands and appreciates Lyme (and Ehrlichia) for the nightmare they are, but is working on buffing up my body over all with supplements, and it's working. HOWEVER that was a knowing decision and not a kneejerk reaction by this doc to work on supplements and vitamins. I would want to know what your Dr Supplement has planned for starting you on antibiotics -- how soon and what ones. If all you're getting is 'here take these vitamins' and he won't discuss anything further, I'd be concerned. I don't believe supplements alone can wipe out Lyme and Ehrlichiosis, but I also think vitamins and supps are an important part of the picture. That's my point of view, developed over the last 4+ years, but again, I'm not medically trained.
Given the heart etc. symptoms you are having, I would think getting on antibiotics promptly could be important.
Whichever doc wants you on supplements and antibiotics has my vote, if we were voting here. If that's the doc that ordered the IGeneX tests, even better.
I don't know which supplements the doc is recommending, but I get mine from the drug store, the grocery store, and online vitamin stores ... good quality, but reasonably priced. I think some docs promote certain brands they sell out of their offices, but I don't know that that is necessary. And I don't have a point of view on it, except to be suspicious when someone is selling stuff I can get somewhere else cheaper. Some vitamins and supps are better quality than others, and it is SO hard to know which are which.
Sorry to ramble but wanted to do a data dump for your consideration.
Please check back and tell us what you are deciding to do, okay? Take care -- AND DON'T GIVE UP! You've been through h*ll already; from there, you can still get better. I did and so have others.
I confess to being tired at the moment and therefore didn't read through the entire post or the above reply, so sorry if I'm repeating what has been said. Steroids are contradicted by Lyme disease. If there is a chance that you have Lyme disease or other chronic infection, and not purely an autoimmune disease, then please use caution about using steroids or other iummo-suppressants.
I was given a fairly short course of prednisone while I was undiagnosed. I felt ill while on them, then I felt awesome for a bout a week after taking them, nearly 99% better from all symptoms. But in the following weeks I crashed back down, and below, where I was health-wise before the treatment. Within a few months of taking steroids I lost the ability to work full time. It took more than a year of treatment for Lyme and co-infections for me to recover from the steroid damage.
Of course, there are many diseases that can benefit from steroid treatment. I'm simply advising, from a medically untrained point of view, to use caution.
Read the book "Healing Lyme" by Stephen Buhner because it explains a lot. Lyme is not a bacterium (exactly) though it closely resembles one. It is also close to protozoa. It appears (at this time) to be its own extremely virilant and highly changable type of organism. This explains why antibiotics are not 100% effective in treatment in many cases. That's part of the story. Your own DNA is another piece of the puzzle. Is your innate immune system compromised at fighting Lyme to begin with? Probably from the sound of things. Otherwise bodies tend to fight Lyme on their own fairly effectively. I am on supplemental therapy for Lyme and it is working for me (so far.) My program was designed for me personally by my functional doctor (internist, MD, holistic doc, too---all rolled into one.) Supplements that improve immunne function can't hurt you. So even if they don't work, that might help your doctor rule them out and move on to something else that works. It might be worth a try. See what the book I recommended says that the supplements he is recommending do. A positive attitude helps, too. The mind is very powerful. Best wishes!
P.S. Apparently antibiotics can work if you get to them quickly once you are infected. If you wait longer they may not work, or work for a while and then you relapse. Some of the strains of spirochetes are antibiotic resistant, too (more strains are becoming this way, which makes sense.) Antibiotics also break your body down so use with extreme caution and care. You might just be contributing to the problem by taking them.
My father had erlichiosis many years ago. He thought he had a flu so waited it out for a couple of weeks. That landed him in the hospital where he was diagnosed immediately and was given some powerful antibiotics for three days at the hospital which killed the bacteria (supposedly--who knows?) While dying, the erlichiosis gave off a very powerful toxin which was slowly poisoning/killing him. So they had to lower the antibiotic amt. and slow down the antibiotic treatment and kill the pathogen more slowly. If you get antibiotic treatment for erlichiosis you may want to ask your doc about the toxins it can give off.
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