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Old 12-05-2011, 10:26 AM   #1
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A Long Road

I'm here to share my story, and to see if it rings any bells for anyone else. I've reached a plateau of sorts, and am not exactly sure how to proceed.

I was bitten in May of this year, got the rash, and four weeks of oral Doxy right away. Symptoms subsided for three weeks, then back with a vengeance. Back on Doxy for three weeks, symptoms lessened, then nearly gone, but then returned about a month later. They've been around ever since in one capacity or another. Although I believe that overall my original symptoms have lessened (but I think I've also gotten used to the joint pain and brain fog, they are my "new normal") I have new symptoms that seem much more insidious (numbness, tingling, leg weakness, weight loss, bowel issues).

At that point I started seeing an infectious disease specialist. I live in a Lyme-endemic area, so he's fairly well-versed, even if I have to keep reminding him that I had/have a confirmed case of Lyme. I have both neuro and arthritis symptoms, and he recommends IV antibiotics. But this requires tests.

I just had a lumbar puncture on Thursday, and four days later I'm still in bed from the headaches, nausea, dizziness and fatigue. Doc says to be patient.

Anyway, overall, I feel my conclusions must be one of the following:

A - I had a nasty case of Lyme that produced a lot of toxins and inflammation, and it's just taking my body a long time to sort it all out. I should just be patient.

B - My version of Lyme has resisted treatment, and is still an active infection. It is becoming more deep-seated in my system and I should hit it with everything I've got so that it doesn't go deeper and cause something chronic.

C - I had Lyme, it caused a huge impact to my system, which has allowed a dormant/underlying condition to take hold. MS/Chron's/Addison's/whathaveyou

I'm fully anticipating that the LP will come back negative (it seems most do) and that this will be cause for the Doctor and insurance to deny coverage. Has this been anyone else's experience?

Interstingly, during the recovery from the LP I've had an increase in the strength of in my Lyme symptoms, such as foginess (trouble reading is new one, also not remembering order like in Solitaire) and knee pain. Has this been anyone else's experience?

Thank you. I know I'm all over the place here. I'm not disabled so sometimes I feel like a bit of a crybaby with all this, and mostly it would be great to hear that I'm on a valid track and should continue pursuing treatment.

 
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jojo (12-07-2011)
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Old 12-07-2011, 07:11 AM   #2
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Re: A Long Road

Doing 4 weeks of doxy is definatly not enough. As you are seeig with your continuig symptoms. With this bacteria there are different stages of it's life. You need one to kill the newbies, the adult ones and then they create a cyst around themselves, so you need a cyst buster. It is a on going cycle.
From what I have been through and have talked to others. Your never done with it. Some may put it into remission for it only to come out later.

Also there are other things that rittle the body full of infection that need to be taken care of also. Such as Babesia, Bartonella, Mycoplasma Pnumoniae, Chlamydia Pnumoniae, Epstein Barr, Cytomeglovirus and anything else that you aquired. It is like runraveling pandoras box.

So most likely it is not just lyme that your are trying to fight off.....
Lumbar Puntures as you see are NOT good for lyme patients. Or anyone with a weakened immune system. I had one done and it landed me down in bed with a worse headache than I already had.
I have read that just doing doxy also can make the bacteria spread more.
You need a doc that knows about Lyme and the other bacterias and viruses that I have mentioned.
Having symptoms still means you are still infected. Having inflammation means they are still there.
Detoxing is a big necessity and taking supplements, doing high doses of vitamin C and it is good to do Pure Salt. (not table salt).

I wish you luck in getting to a doc that will work with you.

Jodie

 
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Proudmary (12-07-2011)
Old 12-07-2011, 07:57 AM   #3
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Re: A Long Road

Thanks very much. I also think that I'm still sick, but none of my tests will confirm that. I'm on day six of bedrest from the damn LP, which I just heard from the the neurologist's office came back negative for Lyme, so this has been a huge, giant, horrendous waste of time. A week on my freaking back, out of work for nothing. So, negative blood, negative MRI, negative LP. I don't know what's wrong with me. The doctor tested for co-infections, thyroid, RH factor, everything else he could think of. I know I should go to a LLMD but I don't want to put my family in the poor house. We just got out of debt for Christ's Sake. Anyway, I'm upset. I guess my next step is the natural remedies since it looks like I'm at the end of the doctor road. Onward.

 
Old 12-07-2011, 08:06 AM   #4
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Re: A Long Road

I feel your pain, and am saddened for anyone having to go through this crap.
I have had multitudes of different types of testing. MRI, LP, ect ect...and the test come out negative. As many others do with lyme and co-infections.
So the reason it is best to spend your money on a Lyme Specialist. In the Long run it will save you money and your health.

Testing for Lyme and co-infections are NOT accurate. The lyme bacteria does not like oxygen so hids out in tissue, bone, brain (organs), muscle...so it is very hard to get a diagnoises through test.

Get past the pain and such from the LP then get to a doctor that understands what to look for. Just my opinion.

Jodie

 
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Old 12-07-2011, 08:31 AM   #5
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Re: A Long Road

I agree with everything Jojo has posted. In addition, I vote for #B on your original post. And to emphasize, forget about all the testing, just find an LLMD or qualified Naturopath (who understands Lyme) and buckle down with treatment and detoxing. This is, unfortunately, usually a very long road to hoe (unless you begin treatment within 3 to 4 weeks after being infected).

Acceptance that the disease exists in our body is part of the healing. We can't stay on the healing path and find the best sources of treatment if we are in denial or are operating with misinformation about the disease itself. Do a lot of research. Talk to other lymies. The more information you have the more empowered you will feel.

All the best!

Jen

Last edited by jenj770; 12-07-2011 at 08:32 AM.

 
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Proudmary (12-07-2011)
Old 12-07-2011, 08:55 AM   #6
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Re: A Long Road

What Jen said is wise...

I have Lyme, Chlamydia Pnumoniae, Babesia, Geardia, Epstein Barr, Cytomeglovius and lord knows what else...
And there are times after 11 years of treatment the correct way"s" I get into slumps...tired of dealing with it. But it doesn't keep me down long. We all have to say...k this is what I have...I am happy that I know what I have. And have stopped running to doctor to doctor for diagnosies...

No one has a say in their disabilites, but we learn how to tolerate them...

Jodie

 
Old 12-07-2011, 09:32 AM   #7
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Re: A Long Road

Thanks very much for your reply. Part of my denial is that I was treated within two weeks of being bitten, so I feel I'm outside the norm somewhat.

I have begun to wonder, however, if I had been infected in the past, and if that might be the reason for the virulence of my initial symptoms (every one in the book) and that I've failed to respond to treatment that seems to work for others. I have a rich history of neuro-weirdness from bell's palsy, to migraines, to vertigo, to just plain passing out ever since college, when I spent a summer rolling around the farmlands of Minnesota and Wisconsin and could easily have been bitten by a tick and not noticed.

I have discussed it with my husband, and he is completely supportive of pursuing the LLMD route, so it's nice that I have that support despite the financial strain. Mostly I am just sick and tired of being shut down by tests tests and more tests, and need to speak to someone who had experience, can look at the whole picture and can formulate a clear strategy. Tired of all the questions. Thanks guys, hope you're feeling good today.

 
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Old 12-07-2011, 09:37 AM   #8
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Re: A Long Road

Sounds exactly like symptoms of Lyme.
And it sounds as though it has been displaying itself over the years.

I am not one to believe that 4 weeks at the very beginning helps. That is just my own opinion....

Hope you have a restful day...

It is also a good idea to know that it is in the syphilis family. Read up on both.

Jodie

 
Old 12-18-2011, 06:07 PM   #9
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Re: A Long Road

Quote:
Originally Posted by Proudmary View Post
I'm here to share my story, and to see if it rings any bells for anyone else. I've reached a plateau of sorts, and am not exactly sure how to proceed.

I was bitten in May of this year, got the rash, and four weeks of oral Doxy right away. Symptoms subsided for three weeks, then back with a vengeance. Back on Doxy for three weeks, symptoms lessened, then nearly gone, but then returned about a month later. They've been around ever since in one capacity or another. Although I believe that overall my original symptoms have lessened (but I think I've also gotten used to the joint pain and brain fog, they are my "new normal") I have new symptoms that seem much more insidious (numbness, tingling, leg weakness, weight loss, bowel issues).

At that point I started seeing an infectious disease specialist. I live in a Lyme-endemic area, so he's fairly well-versed, even if I have to keep reminding him that I had/have a confirmed case of Lyme. I have both neuro and arthritis symptoms, and he recommends IV antibiotics. But this requires tests.

I just had a lumbar puncture on Thursday, and four days later I'm still in bed from the headaches, nausea, dizziness and fatigue. Doc says to be patient.

Anyway, overall, I feel my conclusions must be one of the following:

A - I had a nasty case of Lyme that produced a lot of toxins and inflammation, and it's just taking my body a long time to sort it all out. I should just be patient.

B - My version of Lyme has resisted treatment, and is still an active infection. It is becoming more deep-seated in my system and I should hit it with everything I've got so that it doesn't go deeper and cause something chronic.

C - I had Lyme, it caused a huge impact to my system, which has allowed a dormant/underlying condition to take hold. MS/Chron's/Addison's/whathaveyou

I'm fully anticipating that the LP will come back negative (it seems most do) and that this will be cause for the Doctor and insurance to deny coverage. Has this been anyone else's experience?

Interstingly, during the recovery from the LP I've had an increase in the strength of in my Lyme symptoms, such as foginess (trouble reading is new one, also not remembering order like in Solitaire) and knee pain. Has this been anyone else's experience?

Thank you. I know I'm all over the place here. I'm not disabled so sometimes I feel like a bit of a crybaby with all this, and mostly it would be great to hear that I'm on a valid track and should continue pursuing treatment.
Bells ringing here!!! Like you, I was treated about 2 weeks after they think I was bitten because I was THAT bad.

I think it is a, b and c. I had experts that everyone on this board would know look at my case.

I gotta withhold names but lets just say - all lymies know them both ID docs and llmds. ( despite my Impaired condition I was with it enough to realize that I was in a bad spot and if things got worse- I wanted both sides arguing at the foot of my bed)

The consensus:

Lyme permanently changes you...

There is a paradoxical effect that they are starting to research - very healthy people that get bit by an "über tick" fall harder . In my case I was a long distance athlete, never ever sick - and before I knew it I had belles palsy, neuro involvement, acute cardiac deconditioning - just for starters.

And, yes the researchers are starting to think that Lyme is becoming resistant. ( isn't that scary).

There is also question about whether or not Lyme will re-emerge (like shingles) when your immune system is severely compromised. The doctore don't know the answer to that one yet.

I say the answer is yes it could so your job is to care for yourself as best you can so that Lyme doesn't get ahead of you.

So.... Yes it stinks. But like another person posted... We all have to deal with stuff in life and now you know what your stuff is.

I am now 2.5 years out of "the worst" - I still deal with residual issues... Mostly memory loss and cardiac deconditioning but I am a fighter. At one point i couldn't concentrate enuf to read. That is better, not gone but better.

So....keep fighting and know you are NOT nuts. Think of who you love and fight for them- that will give you strength when you think ...you just can't do this anymore.
Xo

 
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