posted
This is my first post. I found this message board a few days ago and wanted to let everyone know what a valuable source of information this seems to be, even though at this point it seems like most of the posts are above my head.
My story is a bit confusing - and I still am not even sure to this day I have lyme. It began about 6 years ago when I had some joint pain, in my foot and low back. I live in a lyme endemic area of central NJ. He tested me with an Elisa test (no WB) and I was positive. I didn't have any other symptoms at the time but my doctor decided to put my on Doxy for 21 days. After 2 weeks I felt acutely worse with what seemed like a febrile illness. He changed me to Suprax and Azithromycin to complete a 1 month course, but I continued to feel poorly and never got any better even after stopping the antibiotics.
After that, he said I was cured and had ``post-lyme'' syndrome. I felt significantly worse than before treatment. I had problems with my vision (things just looked funny) and incredible fatigue. I felt like I was drunk all the time. It was horrible. Though it has lessened slightly in degree, it has continued for the past several years.
During this time period I also came to receive a CFS diagnosis. I asked several doctors if lyme could be the cause of my problems, and all told me ``no.'' Most said I probably never had lyme to start with. I became disgusted with the medical system. I was tired of being called a liar, and having my symptoms blamed on depression.
In any event, I have gotten slightly worse over the past several months, and decided to see a LLMD recently. I invested a huge amount on the visit (close to $800) and an additional $1000 on testing not covered by insurance.
Currently, my symptoms are primarily neurologic. I have fatigue, but mainly congnitive difficulties, problems with my memory, this constant ``brain fog''...etc.
He said he thinks I have both Bb and Bartonella. He wants to treat me with:
Doxy 100 mg three times daily Rifampin 300 mg twice daily Azithromycin 300 mg every other day
He said this regimen would treat both diseases. I invested so much time and money seeing him, and there are still days when I wonder if I have CFS - not lyme disease, especially since so many doctors have told me this and it seems like lyme antibiotics precipitated this whole thing.
What do you guys think? And, most importantly, do you think the regimen he prescribed will effectively treat both diseases?
Thank you in advance for you help. I plan to become and active member of this site and am so happy to have found such a supportive family.
posted
One of the LLMD's I have seen started as a CFS doctor. He has tested a lot of his CFS patients and 90% (maybe more) have tested positive for Lyme using the IGeneX test. He now thinks CFS is caused by Lyme.
My daughter is the one with Lyme but reading about it, I have noticed I have a few symptoms. Not enough to be certain that I have it but enough that I can't just ignore the possiblity. I consulted with this LLMD and he suggested I do a "challenge". I will take a few days of antibiotics and see if I herx. If I do, then we will know I have Lyme. He thinks a person without Lyme would not be made worse on antibiotics.
It is hard in the beginning to go against what most doctors believe. My daughter wasn't being helped by the mainstream doctors so I was forced to find another way. She seems to be improving, slowly, this way. It is turning out that I am trusting the mainstream doctors less and less over time.
Posts: 984 | From US | Registered: Dec 2007
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
CFS is a "syndrome".
When patients keep presenting with a group of common symptoms and doctors don't know the cause, they label it as a "syndrome" until someone can figure it out.
You know the cause.
Hopefully you have been thoroughly tested for co-infections.
I'm so sorry you have to be here because this really stinks , but welcome aboard!
Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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posted
Thank you for all your replies. I lived with this CFS diagnosis for so long. I know that my family (despite their outward support) probably believes the 20 doctors who have told me "it's CFS" or "I don't know what it is, but it's NOT lyme!"
How can I tell them otherwise?
Do you really think he put me on the right meds? Are other people on this combination? Are they effective?
Posts: 5 | From Flemington, NJ | Registered: Jul 2008
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i was diagnosed with fibro, CFS, arthritis, somatization disorder, psychiatric disorders, depression, allergies, myositis, you name it...
you cannot convince people you have lyme. i don't know why, there's no rhyme or reason, but nobody will believe you. i know, i've tried, but they just won't listen and this goes for family members, doctors, co-workers, you name them, they don't listen....
sadly, this is one journey many of us have to make alone.
it's lyme....
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Yes it sounds like Lyme to me. You weren't treated appropriately the first time around, that's why you never got better
Sounds like you are in good hands
BTW, I'm orignially from Lawrenceville, NJ
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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A positive Elisa test is pretty much a fact that you had Lyme, plus you live in an endemic area. Lyme is so easy to get.
You also got what we call - The run around. How can you have an active infection one day, then Post Lyme Syndrome the next. Post Lyme Syndrome is an invention of words created by doctors whom get paid by and support the insurance industry with treatment protocols that help them deny benefits and longer term treatment for Lyme.
The fact that you got WORSE on antibiotics is about as POSITIVE as you can be that your illness is being caused by an active/chronic boriella infection.
This is well documented- the herxmeier (herx) reaction. Many top LLMD's (and patients) will tell you if you take antibiotics and develop flu like symptoms and a temporary worsening of your symptoms-- IT IS DUE TO THE LYME bacteria being killed off in your body. The resulting die off is toxic and takes time to clear out of your system.
You made the right decision and did not waste your money going to a LLMD. You want to get better like the rest of us--- and dont believe a Dr, just becuase 'they said so'. 99.9% of all Dr never get 5 minutes of education or training in Lyme disease. They read a two page paper and think they are experts. Let me assure you they are not.
Please get and read Pam Weintraub's new book on Lyme CURE UNKNOWN. It will tell you and your family all you need to know to continue to get treatment and get better.
By the way my primary symptoms are cognitive, mental and fatigue. cant remember anything and live in a partial dream state...i.e. HUH what did you say. I used to be an elite athlete and corporate VP of claims at an insurance company. Trust me it's all about $$$$$. Define the illness, control the claims. Reduced payout= savings and profits.
After 6 months of treatment I AM GETTING better, not 100% yet but better.
Also the treatment plan your LLMD has you on is very similar to what I was given.
Take Care
-------------------- Positive 10 bands WB IGG & IGM + Babesia + Bartonolla and NOW RMSF 3/5/09 all at Quest
tom, i suggest you edit subject line to be more specific to get the readers you want help from ok!
click PENCIL to right of your 1ST POST AT TOP, and go to subject line; example change....
newbie, do my LLMD meds shown sound correct to you?
when done, make sure you went to lower LEFT hand corner so all replies are sent to you, and then click EDIT SEND...DONE! thx
sounds like you got a GOOD LLMD! i don't have co-infections so can't address the other meds ... 300 doxy day GOOD!
tom, be careful w/doxy ... light sensitivities and SUNBURN! read in my newbie package galore about NOIR, NO INFRARED SUNGLASSES, and light sensitivities ... use the advise! see my link at end of my note!
forget what all these OTHER "NON LYME LITERATE" MDS SAID! you are where you are because they failed to diagnosed you correctly and promptly!
now, read, read, and read!
buy a copy of UNDER OUR SKIN lyme documentary just out and made available for last 2 months tops! www.underourskin.com $35 plus postage!
then sit down as a FAMILY and watch together and discuss/cuss after it so they can "GET IT"!
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posted
PS Also get a copy of the new amazing documentary on Lyme Disease; Watch it with your family. All will be shocked - as it will be your story, told by hundreds of other poeple, Dr's, scientists.
posted
Thank you for all your help. I just wanted to be sure the treatment he prescribed seemed appropriate. Maybe it's the disease, but I have just become so paranoid lately. I want to give the abx a try, but wanted to make sure with all you guys (since you are such good resources) that the meds seemed ok. Thank you.
Posts: 5 | From Flemington, NJ | Registered: Jul 2008
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Regarding your treatment plan:
Doxy 100 mg three times daily Rifampin 300 mg twice daily Azithromycin 300 mg every other day
I wonder if you have read the Burrascano guidelines found here:
If not, I suggest you read and STUDY them. Then, you will be educated on lyme disease and will be able to evaluate your doc's treatment plan.
You want to read the section "Combination Therapy" on p. 12-13, especially the part where he recommends metronidazole (flagyl) or tinidazole to kill the cyst form of lyme.
Also see p. 15 regarding need for flagyl.
Also, under "Antibiotics" (p.13), it says:
There are four types of antibiotics in general use for Bb treatment. The TETRACYCLINES, including doxycycline and minocycline, are bacteriostatic unless given in high doses. If high blood levels are not attained, treatment failures in early and late disease are common. However, these high doses can be difficult to tolerate. For example, doxycycline can be very effective but only if adequate blood levels are achieved either by high oral doses (300 to 600 mg daily) or by parenteral administration. Kill kinetics indicate that a large spike in blood and tissue levels is more effective than sustained levels, which is why with doxycycline, oral doses of 200 mg bid is more effective than 100 mg qid.
This is saying that 100 mg of doxy 4 times per day (qid) (a sustained level of 100 mg) does not give you a large spike in blood level and will not be as effective as say 200 mg taken twice per day (bid).
Notice that page 17 recommends 200 mg doxy twice per day.
See p. 23-24 for treatment of bartonella. Notice that levaquin (levofloxacin) is the drug of choice. But rifampin is an alternative to levaquin.
You can do a word search on this document and find a discussion of each drug you are taking and the recommended dosage (such as for azithromycin) also.
When I was sucessfully treated for lyme and bart, I was treated for each one separately and was prescribed zith EVERY day for lyme.
It may be that your doc plans to add flagyl to your treatment at some other time. You may want to inquire about this. It wasn't until flagyl was added to my treatment plan that I was able to recover from lyme disease.
After studying the Guidelines, you may want to have a discussion and find out your doctor's reasoning for each drug and dosage. Then, you would be an informed patient.
I think every lyme patient needs to be active in understanding their lyme treatment and evaluating their doc's treatment of this disease from hell.
I myself have recovered from lyme, bart, and babs by receiving treatment from a doc who followed the Burrascano treatment guidelines. I have since seen many friends and acquiantances recover using the Burrascano guidelines also.
Posts: 9931 | From Maryland | Registered: Dec 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Welcome, Tom.
It looks like a good protocol to start with. Most LLMD's change around treatment as we reach plateaus.
Your dosage of zith is rather low .... usually it's 500 per day. However, many of us have trouble with that drug (I do) so maybe he's easing you into it. I personally have to pulse it - three days of 500 mg per day, then four days off.
The doxy is within the 300-600 mg that Dr. B recommends in the guidelines (on www.ilads.org), but it's at the low side.
So, yes, it's a good start, but those probably won't be the drugs you use for your entire treatment.
Stick around. We also "live chat" every night at 8PM Eastern. There is a post here under medical with the link.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
Would a CD57 test help at all? If it comes out low wouldnt it mean that only lyme can lower the number?
Does it seem like it might be worth a try?
Posts: 1127 | From atlantic city, nj | Registered: May 2008
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Welcome... It's really awful having this illness but this website is very helpful - even if we all don't agree on the best treatment.
Medicine is very individual. We all respond differently & sometimes you have to take things into your own hands & experiment (if you're inclined to do so by necessity or frustration).
I tried the abx & they didn't help me for a number of reasons. I decided to "wing it" & try some other directions.
There are a number of good herbal protocols & sometimes it's a mixture of things.
I've spent over $10,000+ on all kinds of doctors & protocols. It's rough since insurance doesn't always pay for treatments you may want to try. Being ill - you can lose your income, so-called friends & loved ones, your home, & everything.
Many of us are in the same boat. I try to keep positive & look at the good things as opposed to the horror of it all.
All we can do it to keep trying to get well & live each day as best as possible.
Good luck!
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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We also "live chat" every night at 8PM Eastern. There is a post here under medical with the link.
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