ABX didn't work – now what?

[lor]

Hi,

I had real bad wrist pain, that I thought would never go away.  It was my first symtom.

I have RA, brought on by lyme.  I have been treated for Lyme since 2005.  When I was put on Flagyl, my wrist pain went away.  I have since relaped and now I am on the mend again, the wrist pain didn't come back.  But my wrist are deformed from years of inflamation and not very strong.

lori

 

 

[nspiker]

[user=230]anewday[/user] wrote:

Dh said that Dr. F had told him that he was fairly sure he didn't have Lyme because of some sort of symptom that is pretty across the board in Lyme patients. This was well over a year ago and he doesn't recall what that is, but FWIW.

I have to read up on Lyme. We live in the suburbs of Northern CA and dh doesn't recall ever being bitten by a tick or the resulting rash etc. I don't even know if Lyme is transmittable in other ways now or not.

I don't know what symptoms are across the board with lyme, because they vary greatly.  If it were me, and your husband is not improving, I would insist that your husband be tested by Igenex, to put your mind at ease.  And know, that even if the test comes back negative, he may still have lyme.  That is what happened with me. 

I was NEVER bitten by a tick, never, but have been bitten by mosquitoes and spiders, and there may be many vectors that can transmit lyme or co-infections.  This exact conversation was raised at a lyme conference I attended a few weeks ago with the famous Dr. B.    He did not deny or confirm that other insects and rodents transmit lyme. 

When I told Dr. F. that I was being treated for babesia, a co-infection of lyme, he was very supportive, saying the addition of flagyl or zithromax is a good combination therapy with AP.

nancy

[Maz]

[user=230]anewday[/user] wrote:

Dh said that Dr. F had told him that he was fairly sure he didn't have Lyme because of some sort of symptom that is pretty across the board in Lyme patients. This was well over a year ago and he doesn't recall what that is, but FWIW.

Hi Dawn,

Unfortunately, what Dr. F. said above hints strongly that he isn't very Lyme Literate. 🙁 That's because there is no one symptom that is “across the board,” for Lyme disease. There are some common signs and symptoms, but not everyone gets them. Lyme is a mult-systemic disease and the main problems in its diagnosis is that there are over 100 strains in the US (300 worldwide), some being more virulent than others and some being quite wimpy. Then there are the coinfections of Lyme, some which some folk will have and others they won't. Sometimes ticks pass babesia, for instance, and not borreliosis (lyme)…just depends what the tick was feeding on before it attached to its human host. :doh:

Dawn, if you find you hubby was tested thru IGeneX before, it's worth obtaining a copy from Dr. F, as some bands are pretty specific for Lyme, regardless if the test is negative or not. Also worth noting that some folk don't produce enough antibody for some time after infection….often the sickest, immune-compromised patients. So, it's not uncommon for it to take several years for enough antibody to show up on these tests. About a year and a half ago, I spoke with a lady in MA who was bitten in the early 90s and went to her GP with a bulls-eye that her doc told her was a spider bite. Within a few months, she had all-out RA. She was fortunate and bumped into a Road Backer and flew for many years to see Dr S, in Ida Grove. He treated her successfully with IVs and low dose minocycline. However, after a bout with cancer from which she recovered, her RA came back with avengence and she was unable to reach a remissive state again, after her chemotherapy ended. One of her symptoms was a very stiff neck and constant knee trouble for which she thought she'd need knee replacements. Upon reading here that neck issues were associated with Lyme (not RA), she decided to see a LLMD in NYC who dx'd her with babesia, a coinfection of Lyme. He started her on treatment immediately, sent her labs off and they came back highly positive for this prozoan infection ( a relapsing/remitting malaria-like illness). After receiving treatment for babesia, the last I heard she was doing very well and would not need knee replacements! What was so interesting about this lady's story was that her IGeneX labs came back negative for Lyme, even though she had an EM rash years before. Also, that the intermittant clindamycin IVs she received had no effect whatsoever on her babesia. I suppose it's possible that her cancer treatments reduced her ability to produce antibody, or the low dose AP she'd been on had pushed back the Lyme into a remissive state. However, her babesia coinfection was never treated adequately and seemed to become opportunistic after she had been ill. It's quite a story and this is one very brave lady…but I always think on this lady's story when folk have Lyme and think that AP alone will be enough to treat it. Sometimes it is…but, often, it isn't, because Lyme treatments vary quite a bit from Brown's low dose AP.

Think you're wise to get boned up on Lyme disease and it's coinfections. Although there are some common manifestations, not everyone gets all the symptoms and everyone manifests them differently. This really adds to the complex picture of diagnosing Lyme, because it can drill into any tissue in the body and can mimic and trigger just about anything under the sun…much like syphilis, another spirochete.

I hope you are able to find the answers for your DH, Dawn…sounds like you're making good progress and doing what you can to check all possibilities. He's a lucky man! 😀

Peace, Maz

 

 

[anewday]

I cannot tell you how thankful I am for all your time posting so much helpful info. I am practically in tears here. My husband has renewed hope and is encouraged to look into this. Another RB member sent me info on Dr. Steven Harris today and I found his website and am thrilled to see it's only a few hours drive from us!!

Thanks, Maz – we'll get a copy of his paperwork from his Lyme test to see what the bands show as well as where the bloodwork was done. Definately will have him tested for it with the IGeneX lab, whether through Dr. F or possibly Dr. Harris.

Thank you!

[anewday]

[user=27]Maz[/user] wrote:

[user=230]anewday[/user] wrote:

Dh said that Dr. F had told him that he was fairly sure he didn't have Lyme because of some sort of symptom that is pretty across the board in Lyme patients. This was well over a year ago and he doesn't recall what that is, but FWIW.

About a year and a half ago, I spoke with a lady in MA who was bitten in the early 90s and went to her GP with a bulls-eye that her doc told her was a spider bite. Within a few months, she had all-out RA. She was fortunate and bumped into a Road Backer and flew for many years to see Dr S, in Ida Grove. He treated her successfully with IVs and low dose minocycline. However, after a bout with cancer from which she recovered, her RA came back with avengence and she was unable to reach a remissive state again, after her chemotherapy ended. One of her symptoms was a very stiff neck and constant knee trouble for which she thought she'd need knee replacements. Upon reading here that neck issues were associated with Lyme (not RA), she decided to see a LLMD in NYC who dx'd her with babesia, a coinfection of Lyme. He started her on treatment immediately, sent her labs off and they came back highly positive for this prozoan infection ( a relapsing/remitting malaria-like illness). After receiving treatment for babesia, the last I heard she was doing very well and would not need knee replacements! What was so interesting about this lady's story was that her IGeneX labs came back negative for Lyme, even though she had an EM rash years before. Also, that the intermittant clindamycin IVs she received had no effect whatsoever on her babesia. I suppose it's possible that her cancer treatments reduced her ability to produce antibody, or the low dose AP she'd been on had pushed back the Lyme into a remissive state. However, her babesia coinfection was never treated adequately and seemed to become opportunistic after she had been ill. It's quite a story and this is one very brave lady…but I always think on this lady's story when folk have Lyme and think that AP alone will be enough to treat it. Sometimes it is…but, often, it isn't, because Lyme treatments vary quite a bit from Brown's low dose AP.

Peace, Maz

 

 

While symptoms vary a lot in Lyme, it is interesting that some of what has been posted here are symptoms he has dealt with. The wrist issue specifically, but he has also had times where he's struggled a lot with neck pain – sometimes for a week. It's been quite a while, but that was another symptom on the “odd” end of things for RA.

All of his symptoms have been very unusual for RA. In fact, Jeff diagnosed himself when we ran across palindromic RA! We about fell out of our chairs when we found it – FINALLY something made sense!! That was only a few years ago. Dr. F doesn't even think he has full blown RA since his symptoms don't match it.

This would truly be crazy if it were Lyme. I don't want it to be because it's harder to treat than RA, but since my dh insists on being a medical malady :roll-laugh: ….it would probably be a relief to have an actual diagnosis! At least we'd finally know what is going on after years of this.

[Margaret Mueller]

I see Dr. F.  He  said he tested me for lyme and I was not positive for lyme. 

In february he told me he was going to put me on cellcept and prednizone.   I had read enough about cellcept that I knew I wasn't interested in taking it.  At the same time, I realized that while most of my sd symptoms were gone, what was left looked a lot like lyme.  fortunately for me, I didn't take the cellcept or prednizone, because they are immunosuppressants and would have made me even sicker, because when you have lyme that is what happens.

I got an Igenex kit and sent my blood off.  I got my results and borrellia is there.  This is worth doing.

Don't get me wrong, I really like Dr. F, but he isn't a LLMD.

[anewday]

That is interesting about the symptoms you were left with and how they resembled Lyme. I am glad you have gotten answers!

[Suzanne]

[user=230]anewday[/user] wrote:

That is interesting about the symptoms you were left with and how they resembled Lyme.

What symptoms aren't Lyme?  That is what I struggle with –  every symptom of everything can be a Lyme symptom.

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[Margaret Mueller]

I've been reading books about lyme and they mention symptoms, kind of odd things that

I told my doctors as they developed because they were unusual and didn't make any sense to me.  I was universally told there was nothing to worry about.

They aren't the same symptoms all people with lyme have, but they are symptoms that some people with lyme have.  My body is unique, the bacteria in my part of the country may behave differently in my body than they would in someone else.  It's the long list of things going on that gave me the suspicion that lyme could be the problem.  I came to that conclusion about six weeks ago.

I have had, and not particularly in this order:  raynauds', rage, the urge to whimper, heart fluttering, heart palpitations, numbness in my extremities, cognitive impairment, nerves that have gone dead, muscle atrophy and/or weakness, extreme fatigue, developed different tolerances for food than was usual for me, sighing, air starvation, light sensitivity, and others.

[Author]

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