posted
Sorry if this has been covered before but I am new to the board.
When I joined the armed forces in 1988, I was in perfect health. When I returned from the Persian Gulf after Desert Shield/Desert Storm, I had become a different person.
The VA runs from Lyme like roaches from bright lights. They Dx me with fibro, CFS, IBS, benign hypertension, severe depression, obsessive-compulsive personality disorder, EBS, irregular heartbeat, sleep apnea, and I suffered a traumatic brain injury.
I was tested by my private doctor for Lyme, at my repeated request and when the result came back he said I was negative but that I had signs of ALS. WHAT THE....
Needless to say, I was scared and after further tests that was ruled out. However, I still had the issue of having 5 titers on one test and 3 on the other. He said I was negative for Lyme but gave me doxycycline for the "severe case of acne on my back."
My question is with that many titers and all the other Dx from the VA and his Rx of doxy, do I have Lyme? No one will give me a straight answer.
Every day it's the same. Chronic pain, chronic fatigue, muscle, and joint stiffness coupled with memory loss and the feeling that have been hit by a Mac Truck.
Thanks for the help.
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posted
See a qualified ILADs Lyme Literate Doctor in your state to seek the treatment needed.
Any Doctor relying on bloodwork to tell whether or not they're in remission with Lyme is not educated in treating Chronic Lyme Disease, there still isn't an accurate test to diagnose lyme or tell if you're in remission.
The Elisa tests for 1 strain of borrelia, there are over 50 strains of borrelia, possibly more.
And it goes by the antibodies your immune system builds up, but in many cases your body may not release the antibodies the test can identify, because your immune system may be suppressed.
ILADs and the lyme literate Doctors under this organization will recommend treating until most of your symptoms are gone, that's basically their guidelines.
Most likely your VA Doctor will say they are quacks, but this is untrue. There's surmounting evidence showing the lyme infection stays chronic due to persister cells, biofilms, and coinfections.
Check out the John Hopkins study on persister cells, as well as Dr. S and Dr. MacDonald's work on biofilms. Also Dr. H's work on how hard Babesia and Bartonella is to treat.
It sounds like you may be a little educated in Chronic Lyme, considering you pointed out that your VA Doctor will give you a longterm prescription of doxy for back acne, but not longterm for chronic Lyme.
I suspect you've read a little about lyme disease and the controversy surrounding, maybe even seen one of the Under Our Skin Documentaries. If not, be sure to watch those, great information in those docs.
Longer you wait, longter Lyme will be harder to treat in the long run. A lot of breakthroughs have been made in last few years with treating biofilms and persister cells.
I recommend checking out what the top LLMDs are using to help treat lyme these days, for persister cells, biofilms, and coinfections like Babesia.
Dr. J is using xylitol and lactoferrin to treat biofilms, then antibiotics like Daraprim and Dapsone to kill of borrelia, round body forms, and persister cells.
Dr. H likes to use Stevia and Oregano oil to treat biofilms, then antibiotics like Dapsone, Rifampin, and Doxy.
Treating with a single antibiotic like Doxy won't cut it these days, I suspect it never did when it comes to reaching remission with chronic lyme, but it may hold back the lyme infection for now.
Due to bacteria evolving and more pathogens in ticks these days, you'll have to treat with multiple antibiotics to make progress.
Majority of lyme patients get better, but just remember, that not all lyme literate doctors are created equal and some do not stay up to date with breakthroughs and recent protocols. Some also like using their own protocols.
If your local LLMD isn't properly addressing coinfections or biofilms, that should be a warning sign.
When I contracted Lyme 8-9 years ago, patients and Doctors followed what Dr. B was using. Now a lot of lyme patients are seeing success with what Dr. J and Dr. H are using these days.
Most patients still relapse, but most find the point where they can function in there day to day lives. I think you'll be able to get rid of most your muscle pain, joint pain, and inflammation.
The hardest symptoms to combat are the fatigue and relapsing, maybe even neurological symptoms if you have any, but it does sound like you have a borrelia strain the primarily went to your joints and muscle tissue.
I had success combining herbs with antibiotics. Herbs are both great for addressing biofilms and coinfections, but antibiotics tend to be more potent when addressing the overall lyme infection.
But antibiotics aren't for everybody due to toxicity and herxing, some try herbs and other alternative medicine, but I think you'll find longterm antibiotics still have the best track record to date.
Don't underestimate using the search box on here, as many of the questions you asked have been addressed many times over. Thank you for your service! Lyme Net has some great information on here, but Healing Well forums have been pretty lively these days, as well as YouTube.
Make use of the private message system on various forums if you find a member in your state. With a little digging, shouldn't be too hard to find what Doctor or Doctors everyone recommend with a good reputation in your state.
Again forum search box, YouTube, be sure to make a post on the forums in the seeking doctors section. Even Google and a few websites list LLMDs these days with reviews.
Also remember some forum members may have different opinions on the subject because the science isn't yet settled on Lyme Disease yet. This is my opinion after dealing with the disease for 8-9 years...
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posted
Yep, sounds like Lyme. You are welcome to post in the Seeking a Doctor section for referrals to Lyme-treating docs.
At the top of the Medical Questions section, there's a link for Important Info about Lyme and Co's. There's a link in that to 27 reasons why people may not test positive even tho having these illnesses. Reading thru that can give you more understanding about the imperfect testing situation we still deal with, and why Lyme-treating doctors will treat clinically, based on history and symptoms.
Garth Nicolson is also an expert on GWS - you could check out his website as well.
Posts: 13171 | From San Francisco | Registered: May 2006
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You need to be evaluated and treated by a LLMD. Non LLMDs have no clue about this horrible disease or its complex treatment!
A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.
Unfortunately, LLMDs are far and few between. You need to go where they are. I don't know of any in AR.
Also, most LLMDs do not accept insurance due to the politics surrounding this horrible disease. Read poster TF's explanation, "Why Lyme Doctors Don't Take Insurance":
Read the books written by the top LLMD, Dr. H, titled, "Why Can't I Get Better?" and "How Can I Get Better?". They are an excellent source of information.
Also read "Cure Unknown" by Pamela Weintraub. Check the local library or buy it used on Amazon.
Btw - I know you are new to Lymenet, but you should not use your real name, because this is a public forum with all sorts of people on it. Read this link about it:
To remove your name from the signature line, click on "Edit Profile" under Lymenet Flash in the top middle section of the Lymenet page.
Click on "Edit Profile" on the left-hand side, scroll down to "Profile Fields" then down to "Signature". Make your changes, then click "Update Profile".
God bless and thank you for your service.
Posts: 9020 | From Illinois | Registered: May 2006
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