posted
I have had lyme, undiagnosed, for possibly 15 yrs or so. It was discovered in April, 2010- I was on doxy for a month, amox for a month, rocephin IV for 2 months and now ceftin for a month. I, truthfully, feel only a fragment better. I started to improve on Rocephin but could not afford the treatment once insurance stopped paying.
Any advice? Thoughts? Because I have had SOOO many wrong diagnoses, it is hard for me to believe that I will EVER feel better from this "mystery disease". My WB was CDC positive for lyme, but I was negative for coinfections.
Any thoughts, encouragement etc would help. I am taking 500mg of ceftin 2x a day (doc doesnt want to overload me as I have severe GI issues).
Posts: 341 | From NY/FL | Registered: Apr 2010
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
Ceftin is good, you just need to add a cyst buster. Flagyl is usually the one to start with.
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
I know how you feel. I'm trying to work my way out of this situation also. My suggestion is this.... do as much research as you can so you are in sync with your doctor. Read Dr. Burrascano's guidelines, etc. I only found my way to a LLMD about 4 years ago. I trusted that since he was Lyme Literate he would know what to do with the meds. I kept my focus on everything else - food, supplements, rest, etc. Shame on me for not paying closer attention. I was never on combinations of antibiotics (as is needed for all of the different forms of Lyme), I was only on them individually, and the doses weren't high enough to be truly therapeutic. Also my co-infections (Bart and Babs) were never really diagnosed and addressed. Now I am with a new LLMD who looks like will be much more thorough. Because of yeast, I am not on antibiotics now, but I am doing a ton of herbal things and supplements (while on Diflucan to kill the yeast). Anyway, my point is you need to really learn as much as you can so you can help steer things, or at least know when you think you are not on the right track. And stay connected to this wonderful site. I just found it myself a few weeks ago. Here I have found really smart, knowledgeable, compassionate, encouraging people. Wishing you the best, Tammy
Posts: 2238 | From East Coast | Registered: Jul 2010
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posted
Hey guys- thanks for the messages. I am also on plaquenil.. is that a cyst buster? I am trying to get educated, but my LLMD is supposed to be one of the best.. so I am just trying to be patient.
I am just wondering, was I on each med too short of a time? I am hoping to get back on rocephin one day as it started to help. I just worry I will never feel ok.. especially the GI stuff.
How long were u on the Ceftin before it started to work?
Posts: 341 | From NY/FL | Registered: Apr 2010
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posted
Not many here have a CDC positive WB! ... so you are way ahead of us!
I seriously doubt that you don't have Lyme.
When you first begin treatment, you will have a worsening of symptoms. You could feel worse for quite awhile.
That is not to DIScourage you but to let you know that if you don't feel much better.. THAT IS NORMAL.
Read and learn all you can here. The knowledge will sustain you to keep going .. headed for the success that so many have found. Success that YOU will also find!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Would you consider 4-5 months of treatment the "beginning of treatment?"
I had a very bad herx on the Rocephin about 2wks in. I had a medium herx on the ceftin 2 wks in. The only improvment I have had has been in sleep and in a little reduction in leg pain (which can be quite severe)...
Posts: 341 | From NY/FL | Registered: Apr 2010
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
We have all had SOOO many wrong diagnoses!
If you are CDC positive on the WB, you have Lyme. Rest assured. Just because you are negative for co-infections, does not mean you don't have them.
Lyme testing is notoriously inaccurate, often returning "negative" results in the presence of infection. Diagnoses are based primarily on symptoms, with testing used for confirmation.
Now, your job is to educate yourself about Lyme. You must watch the documentary Under Our Skin. www.underourskin.com
And read Cure Unknown, Inside the Lyme Epidemic, by Pamela Weintraub.
Most LLMDs do not prescribe one antibiotic at a time (monotherapy), as this is not enough to get patients well. That said, sometimes very weak or very toxic patients need to start on low doses just to tolerate them.
Did you find your LLMD through this forum? Has s/he put other Lyme patients into remission? This is crucial, as many docs call themselves LLMDs but do not treat Lyme effectively!
For now, you mostly seem doubtful of your diagnosis. If you are CDC positive, you have Lyme. And the 15 year time lag between illness and diagnosis is really common here. It was 18 years for me.
Please begin to educate yourself. You will become more confident in your diagnosis are you learn more.
Then you must begin to actively involve yourself in your treatment. It's not as hard as it seems. Use this forum and other sites. Read Lyme books.
Your best shot at a symptom-free remission is treating proactively with the right doctor!
It will take years to reach remission (sorry!), but you can get there. It is worth it. I promise.
I am in year three of treatment and about 80% resolved.
posted
Thank you all. Really I mean it, a huge thank you.
I have read Cure Unknown and seen Under our skin. I am CDC positive for the IgM but not IGG. This makes no sense to me as I understand that IgM means a new infection whereas IGG is a long term infection.
I have been sick 15 yrs or so, so shouldnt I be CDC positive on IGG? I have not had the specialized Igenex testing for IGG, just quest diagnostics testing.
Also, My LLMD was recommended to me on this site and is pretty well known in NY. I hope he knows what he is doing!!! I have heard good things about him bringing ppl to remission and I do like him. Unfortunately I started treatment with him in NY and then moved to Florida.. he is treating me over the phone right now
Thanks again everyone.
Posts: 341 | From NY/FL | Registered: Apr 2010
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
With Lyme IgG and IgM break the rules, so who knows how long you have been ill from the tests. You have to base it on symptoms.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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I have been sick 15 yrs or so, so shouldnt I be CDC positive on IGG? I have not had the specialized Igenex testing for IGG, just quest diagnostics testing.
From Dr C's Western Blot explanation:
--"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. ---"
I had Lyme over 30 years before I as diagnosed. I got bitten again 7 years ago and really got a lot worse, then it took three years to get diagnosed, and three years of treatment.
I've been well now for over a year. I'm now feeling the best I've ever felt, so you can beat this.
GI issues were HUGE, HUGE, HUGE for me!!!!! I would highly recommend (not that I'm a doctor, I'm not) looking into parasite treatment. Humaworm helped tons!! I did four rounds of it.
Also, Enula got rid of the roundworms. Roundworms can be a key component according to Dr. K (Betterhealthguy.com 's notes from a recent talk).
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Thanks everyone. I feel like I am doing worse right now than usual. Last night I had such severe GI pain that I almost went to the hospital. I couldn't sleep through the night, am very nauseous and now my knees are achey. I have a bad headache as well.
Thank you all for keeping me keeping on. I guess it seems my treatment is not very far along. Should I ask my LLMD about parasite treatment?
It frustrates me that many of the great suggestions presented on this board are never mentioned by my doc.
Also thanks for the explanation on Igg IGM, that makes me feel better. I was told I was CDC positive on my WB for IgM.
I believe it because I was originally evaluated by a neurologist and then an ID who both agreed I had lyme. (of course they wanted to do 21-28 days of Rocephin with a PICC right off the bat and then stop treatment.)
Posts: 341 | From NY/FL | Registered: Apr 2010
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posted
I had to do parasite treatment on my own. It was never mentioned by my LLMD. He seemed skeptical when I told him about it, but he did write down the website name where I bought my herbs and I have read here that the NP at his office recommended the herbs to that person.
I took enula between rounds of Humaworm. The enula was important, it was the only thing that got the roundworms. My LLMD had me on oregano oil, plant tannins, and uva ursi for a bacterial overgrowth in my intestines (it was just easier to take the Humaworm, so I switched to it and it got parasites, too).
I also had to take VSL#3 daily the whole time I was on abx. No other probiotic was enough. VSL#3 has 450 billion organisms.
I also did better on smoothies than solid food. I could eat eggs .... but the gluten-free toast didn't settle well, so I ate my egg on a gf Van's frozen waffle with coconut oil.
I got that terrible stomach pain whenever I ate solid food, except for the soft stuff like the eggs.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
This board is valuable because people here have ideas beyond what our LLMD's know about. You are gleaning the experience of hundreds, if not thousands, of patients.
We know what helps us! Doctors don't have a lot of time to explore all the various treatments and things that will help us in our journey.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
I was CDC positive for lyme from Igenex. Treated it with long-term antibiotics and Bionic 880, didn't get any better. Some do, some don't.
I would look into testing for human gammaretrovirus (aka XMRV and MLV variants) as well, since the serology testing is now available from vipdx.
Posts: 713 | From Los Angeles | Registered: Oct 2007
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posted
Spoke to my LLMD today, told him about the excrutiating GI pain and the other symptoms I am having. Noted that I do not feel at all better on the Ceftin, yet. He recommended I stick it out longer and see what happens.
He also is grappling with the idea of adding zithro. Any thoughts on this for someone with horrible GI stuff?
I found prilosec helped. I hate to recommend it because I think it's a bandaid treatment that may make things worse in the long run, but it did help me tons when I was on meds.
Or, I wouldn't do both because they work against each other, HCL works wonders with digestion. It's been almost miraculous in how much it helps me digest food.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
What do you mean "dont do both they work against each other?" Sorry I am confused what two things youre talking about.
I was on something similar to Prilosec during my trial with Doxy which helped the GI stuff. Ugh I am so exhausted I can't even deal with thinking about this stuff.
posted
Also just wanna throw this out there to my more experience lymies-
Last night following an episode of SEVERE abdominal pain (maybe the worst of my life).. I woke at 3am with tingling/nerve pain on the left side of my face (cheek/ear/mouth).
It was very strange.. felt sorta numb but like someone held a cold compress to my face too long.
Posts: 341 | From NY/FL | Registered: Apr 2010
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posted
It sounds like the coinfection Babesia to me. Did you have a CD57 test? I'm also being treated for H pylori in my gut. That's the Bacteria that causes ulcers. If you can afford it, I would consider a LLMD in Florida. It never hurts to get another opinion. I have had Lyme for 13 years if not more....... Coinfections Bart and Babs have been my greatest challenge, not so much the Lyme.
Best to you Posts: 30 | From northern california | Registered: May 2007
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Or, I wouldn't do both because they work against each other, HCL works wonders with digestion. It's been almost miraculous in how much it helps me digest food. [/QB]
She was talking about the HCL and the Prilosec. You can't take both.
The bad thing about Prilosec, etc is that you may never be able to get off of it. I can't get off Nexium now. I started with Prilosec.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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quote:Originally posted by renny1985: [QB] Also just wanna throw this out there to my more experienced lymies-
Last night following an episode of SEVERE abdominal pain (maybe the worst of my life).. I woke at 3am with tingling/nerve pain on the left side of my face (cheek/ear/mouth).
It was very strange.. felt sorta numb but like someone held a cold compress to my face too long.
I think you're herxing hard. Sounds like an episode of Bells Palsy is trying to rear its ugly head!
The gut issue sounds really bad. Did you have them before beginning treatment for Lyme? So maybe this is one big herx for you??
Adding Zith will be really hard on your stomach. But do keep in mind that if your gut issues are from Lyme, then the herxing is necessary to get rid of them.
Did you call your dr??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
I must be herxing bad then. The gut issues were really bad for the past 7 yrs. I have had a full GI workup.. have inflammation in various parts of my GI tract but no crohns or colitis persay.
I am HOPING the GI issues are from lyme because if they are not then I am really lost.
What do I do about the Balls Palsy trying to get in? When people herx, does it get better and worse and better and worse? I mean I feel like crap these past week and a half, but some days hours etc are way worse.
I was taking one of those Prilosec like meds while on Doxy. cant remember the name..grrr.
I called my LLMD. He said to stick it out, hang in there. He will never say "it sounds like a herx". I herxed about 2-3 wks into the Rocephin. I am guessing I take awhile to herx, so maybe that is what is going on.
I hate this disease.
Posts: 341 | From NY/FL | Registered: Apr 2010
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posted
I hope I am killing the bad keets. I hate them. So mean to me.
Sixgoofykids- did you test positive for bart? Did they test for parasites or just treat for them. I was negative (through quest) for all coinfections...
Is it possible to herx like for months? I.e. why don't I feel a little better when the herx ends? I feel better than when herxing, but not better than I did before the herx.
Posts: 341 | From NY/FL | Registered: Apr 2010
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posted
I did not test positive for bart or parasites. I did test positive via stool test for bacterial overgrowth in my intestines.
My LLMD had me take Cipro, and based on my response to Cipro, later I got a bart diagnosis.
After the Cipro, he had me on herbs because it would come right back when I'd stop. I found Humaworm and because it replaced several herbs because it was a combo, I switched to that on my own.
I saw parasites when I took the Humaworm.
You should feel somewhat better over time after herxes. Sometimes the progress is very slow, so think back over a couple months or a few months' time.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I just took a quick look at Dr. B's guidelines and see that Bartonella can cause gastritis (which I have) and abdominal pain (mesenteritis adenitis) which I have as seen on a CT Scan.
I wish my LLMD would pick up on these things. It says in Dr. B's thing that the tx for this is Levaquin.. is Cipro similar?
I am still unclear what the Zithromax would be for in relation to the Ceftin..
Posts: 341 | From NY/FL | Registered: Apr 2010
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Renny, I could relate to so much of what you said.
Like you, I was undiagnosed for a long time...and then, finally, tested CDC positive in June 2005.
Although I was never on IV abx, I have been on ceftin throughout, plus rifampin for a stretch.
The herx I had on ceftin was really nasty, with a lot of neuro symptoms, including facial and body numbness, stuttering, even seizures.
I've also had some GI stuff, which I have thought was ceftin-related.
Mostly, I rode this stuff out, and after about 5 pretty awful months, I did begin to finally see some improvement.
When I'd been on abx for two years, I was able to go to work full time in a super high-pressure environment. In the next three years, I have been able to take on more and more management responsibilities.
Also, many of my issues have completely cleared.
I'd say I'm now at about 85% and currently trying to segue off the ceftin and onto teasel root. It's going slowly. I've also begun seriously addressing diet, which seems to be helping wiht joint pain.
I can offer hope...just hang in. For me, it all got a lot worse before it started gettign better. This forum was an absolutely invaluable comfort and resource. The people here are incredible!
Posts: 2549 | From never never land | Registered: May 2005
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