posted
My most recent blood work showed positive Western Blot AGAIN! My PCP thinks it is just harmless lingering dead cells and is reluctant to give more abx (I'm reluctant to take more abx too!)
My neuro thinks I was re-infected for the 3rd time in 7 months (4 months of which were winter, seems unlikely to me).
Yes I live in Old Lyme, CT Yes, I have 2 indoor/outdoor cats Yes, I am a landscaper (organic land care professional actually spring/summer/fall when I'm not too sick to work)
My risk factors are very high but come on, 3 new infections in 7 months, no new bites, no new rash nothing but more abx and getting sicker!!
I'm really afraid to decide. The Lyme is so debilitating, the abx makes be feel soooo bad and doesn't seem to take down the Lyme either.
I don't know what to do. I'm going in for MRI on Monday, maybe a spinal tap after that.
Please Pray for me!
-------------------- Take It Easy, Peace Posts: 59 | From Old Lyme | Registered: Aug 2011
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
Lisa Lyme, when were you first infected? You can get infected in the winter.
While it is possible you have been reinfected, it is also possible you could have the same infection if you were not treated long enough and/or aggressively enough. What antibiotic and dose did you take? How long were you treated? Many doctors under-treat.
Besides Lyme, ticks can transmit several co-infections including Babesiosis, Ehrlichiosis (Anaplasmosis), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected. Were you tested for these? Many Lyme doctors believe the co-infections need to be treated first.
You may feel worse during treatment from the Jarish-Herxheimer Reaction (herx). When the antibiotics are killing the bacteria, toxins are released making you feel sicker. It is important to use detox methods during treatment. Are you doing anything for detox?
Although a bulls-eye rash is a definite sign of Lyme, only about 50% of people who have Lyme ever get a rash.
It is very important to see a Lyme-knowledgeable doctor and get properly treated. The sooner you can the better. Are you having a spinal tap to test for Lyme disease?
I also suggest learning and doing as many things as you can to minimize your risk of infection.
If you need doctor recommendations, you can post in "Seeking A Doctor."
Posts: 4682 | Registered: Oct 2000
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posted
Thanks Sammy for your input. I have a LONG history with Lyme. almost 30 yrs ago was my first confirmed bout with Lyme. I was one of the first child cases studied in Old Lyme in the mid 80's. Tetracycline for i'm not sure how long I was just kid.
Headaches and spinal arthritis in my teens.
Fairly healthy in my early 20's
Late 20's I had 2 separate cases of Lyme, treated by 3 wks doxy each time and felt better. Then migraines began and depression, addiction and anxiety too.
In my 30's recovering from addiction, depression & anxiety. 2 more tick bites with Lyme symptoms each time I was a little sicker than the last time, more exhaustion, more pain, more fog etc.. 3 weeks doxy has been the standard treatment.
THEN I was bit the last time July 29 2012. I went to the doc within 2 weeks with headaches and exhaustion. He knows the drill so we tested and began 3 wks doxy. I wanted to throw up the entire 3 weeks, & I could not get out of bed, so tired, so achy. When doxy was done I was a little better for a few weeks, then the headaches came back, then migraines.
Doc said to wait till my body recovered from the abx and maybe I'd feel better. 3 weeks later no improvement so we try 6 weeks of amox. because the doxy was wrecking me. Over the winter, a little improvement, but then worse again. My doc was sure the Lyme was gone and now I had Post Treatment Lyme Syndrome, depression and migraines.
Now I am going to a therapist for depression/anxiety and a neurologist for headaches & migraines. The anti-depressants and anti-anxiety drugs help with the fog and lift my spirits so I can chuckle a little even thru the pain, but nothing is touching the migraines and headaches.
I'm on so many meds now my neuro said I had to have regular blood tests to check for liver, kidney, and metabolic issues. I guess she slipped a lyme test in there too because on my next follow-up she informed me that I tested positive on the western blot and should go back on abx.
The rest of the story Is the first post above
-------------------- Take It Easy, Peace Posts: 59 | From Old Lyme | Registered: Aug 2011
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
Lisa Lyme, three weeks of treatment is not long enough for a Lyme infection especially for someone as sick as you have been.
What dose of Doxy did you take--200 mg daily? In my opinion (non-medical of course) I think it is very possible you never eradicated any of these infections and you could have multiple strains of Lyme. Were you ever tested for the co-infections listed above? It does not sound like it. Many people who have Lyme are co-infected. It is important to treat all of the infections you have.
There are some good Lyme doctors in your state. I highly recommend that you see one so you can be properly evaluated and treated. You can send me a private message for their contact information.
Posts: 4682 | Registered: Oct 2000
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Ditto: "three weeks of treatment is not long enough for a Lyme infection"
A MINUMUM of 30 weeks is what some LLMDs suggest, due to the way the life cycles of sprirochete works.
And ALL forms of borrelia need to be treated, not just the spirochete form. Etc.
A spinal tap is NOT a good test for lyme. Not at all.
An ILADS-educated LLMD is the best kind of doctor, nothing less. The doctors you are seeing are not adequately educated in this area if they are suggesting a spinal tap is needed or would even offer helpful information. It will not. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Doxycycline, alone, can CAUSE lyme to become chronic. Sadly. It forces the spirochetes to go into cystic form. Doxy cannot touch lyme in that form. Other action is required such as flagyl, etc.
Sorry to say. Really sorry. Remember that information that may be hard to hear can still hold the keys to your future.
WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Probiotics and anti-candida meausures must go along with any antibiotic treatment, too. It's very important but many regular doctors just don't know this.
Liver support MUST also go along with treatment, too (most LLMDs know this), as it will help you better tolerate treatment:
LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too.
For those who still have trouble tolerating treatment, see the link for a LL ND and for RIFE. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I hope you don't feel bombarded here - but you may sense some frustration coming through as I so hate to see people like you not get the proper information they deserve from doctors.
So many of us have heard what you are hearing from doctors who had no clue. You deserve a doctor who has been adequately educated and has expertise with lyme and all that goes with it.
Sorry to say that it is a very complex matter. So sorry. But many have gotten past it. Take care. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
You definitely were undertreated .. so you may as well get properly treated this time.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- By the way, you never need another lyme test. You may need tests for other tick-borne infections but not for lyme.
I do hope they tested you for OTHER TBD (tick-borne disease) as lyme rarely travels alone and doxycycline cannot address all other possiblities.
Please take all this in the spirit of hope - hope you find the doctor and plan you need. Hope for a good future because - with the right care - it's possible, even if it might take a year or two or three (as it may likely). -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
Here's some info to help you pick an appropriate doctor:
"There is one simple rule to adhere and follow and that is don't mistake good intent for knowledge."
You're might be allergic to the antibiotics or not detoxing correctly, that's why you're having the bad reaction.
Even Dr. H says this:
"If patients do poorly on antibiotic regimens, then it means that I need to deal with other problems that they have and which are blocking the antibiotics from being fully effective."
I was horribly allergic to many common antibiotics (it was not a herx) and had to work with a doc her understood how to workaround that.
Please test for other infections. I had 11 infections other than lyme going on (some were probably there before lyme).
Also 3 weeks of antibiotics is NOT enough.
You might want to consider seeing an alternative doc to get your body in shape before doing more antibiotics.
A Lyme Literate Naturopathic Docter or Lyme Literate Dr. of Oriental Medicine might be able to help you feel better while you're healing.
Posts: 2839 | From California | Registered: Jul 2012
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posted
And yes, you more than likely have coinfections which have never been treated. So NOW you can get WELL!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote:Originally posted by Lisa Lyme: Now I am going to a therapist for depression/anxiety and a neurologist for headaches & migraines.
The anti-depressants and anti-anxiety drugs help with the fog and lift my spirits so I can chuckle a little even thru the pain, but nothing is touching the migraines and headaches.
A neurologist started me on Zoloft for crippling migraines. As she increased the dose, my pain level decreased.
Other things improved too...the constant negative ruminating stopped, the premenstrual syndrome stopped, and the ocular migraines stopped.
My family doctor started me on a beta blocker, and this reduced the migraines a little too.
When I began taking Wobenzym to reduce inflammation, I wasn't sure exactly what would happen. But within two weeks, as I ramped up to ten tablets daily, the constant migraines were reduced, and I no longer woke up every day with a splitting headache.
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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posted
Thanks for all the good help! I do have an appointment with a llmd finally. She is away on vacation for 2 weeks, so that will give me just enough time to round up all my records from all my doc's and have them sent to her. This llmd is listed as a cardiologist, not an infectious disease specialist, but was assured by her receptionist, and you folks that she is indeed a llmd.
My PCP has phoned in a rx for amox to get be by till then.
I am hopeful!
-------------------- Take It Easy, Peace Posts: 59 | From Old Lyme | Registered: Aug 2011
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posted
I hope she is good. You certainly do NOT need an infectious disease dr .. there are very few who are Lyme literate.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Many doctors who are of the IDSA mindset may SAY they will treat lyme but don't even know that they don't, really.
Be sure they at least know what ILADS is. Even better if somehow connected.
If several others with lyme have suggested this particular doctor, that is good. But, sometimes, names of doctors who are not true LLMD get on the list so it's vital to go beyond just the list when researching your doctors.
Checking with all area lyme support groups within a hundred mile radius or so of the doctor usually offers some good feedback.
Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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