In May of 2009 I was bitten by a tick. Brought the sucker to my Dr's. He took the tick (although there is no record of what happened to it) and gave me Doxy prophylaxis.
Fast forward to the end of June: Two bull's eye Rashes, 17 and 19 cms. Diagnosed Lyme, 21 days of Doxy.
Fast forward to September - beginning to get severe headaches, growing more and more frequent. Between Sept. and now I have added, in addition to the headaches, memory loss, temporary confusion (like when you wake up not knowing where you are, except in the middle of the day walking through the office), sleep issues, palpitations, blurred vision, double vision, fatigue, sweats, random back and knee pain, blah blah.
So, Doc has me get my Endo checked - fine. Nuerologist - fine. MRI - Fine. EEG - fine. Bloodwork (vitamin deficiencies) - fine, Nuerosurgeon - fine. Nuero wants me to go to a Pulmo to have a sleep study...still have to do it.
So I was realizing that all this happened after the Lyme. I called the Doc's office and finally got him to give me another Lyme test.
Results: LYME AB/TOTAL: 1.16 (I assume this is the EIA?) sayeth Lyme WB Present for P39, P41, P58 = CDC sayeth no lyme IGm present for P41 (but not P39....but P39 was present in the WB? I don't understand!!)
And if p39 were present in the WB, how could it not be present in the Igm?
Somebody Please HALP! If the prophylatic dose didn't work, isn't it possible that the 21 day course didn't?
So confused...thanks anyone SO MUCH for any and all input you may have....please tell me I am not losing my mind
Posts: 3 | From Albany, NY | Registered: May 2010
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"Band 39: Unknown what this antigen is, but based on research at the National Institute of Health (NIH), other Borrelia (such as Borrelia recurrentis that causes relapsing fever), do not even have the genetics to code for the 39 kDa antigen, much less produce it. It is the most specific antibody for borreliosis of all."---DR C of MO
Quite often you will have bands on the IgG and not on the IgM and vice versa. No worries.. they are still important.
Bottom line... you have Lyme....
Now work on finding an LLMD.. Lyme Literate MD.
You can go to Seeking a Doctor here and someone will help you find a dr near you.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
You may be dealing with co-infections. You should be tested for Bartonella and Babesia although even if you have them the test can come back negative.
If you see an LLMD they will treat you for all co-infections. If you have something like Babesia (which is common) you will need an anti-malarial drug. Doxy will not touch Babesia.
Have you seen a Lyme Literate doctor? If not, go to seeking doctor.
Take Care
Posts: 2232 | From USA | Registered: Aug 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I would seek a LLMD to help you also.
And the sooner the better. The longer you wait the
harder it is to fix. Then you have to heal
everything it has wormed its way through.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- If you get to a true lyme expert, this can be sorted out. Typical blood work usually is fine. Spirochetes don't show up in typical tests.
Sorry to tell you this, but most doctors are criminally ignorant about lyme. 21 days of Doxy was not nearly enough. You should have been treated for much longer.
You also do not need another lyme test. The Bulls Eye Rash is definitely lyme. You were severely undertreated. You need a knowledgeable doctor.
Once you had the bulls eye rashes, you don't need a lyme test. It's in your body. There is no cure but many can get into remission. But it takes much longer than 21 days and it takes more than a single antibiotic (abx).
Please get to a Lyme Literate Medical Doctor (LLMD).
I would save your money to test for coinfections - but first see the LLMD so she or he can determine which ones to consider and which labs are best. Most labs don't do the tests correctly.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" - 2007
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
". . . If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided. . . ."
posted
Oh my! Thank you all so much. I just contacted igenex about their test.
Also, trying to find an LLD. One that will take insurance or that I can afford anyways !
Posts: 3 | From Albany, NY | Registered: May 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Hopefully, you have some photos of your bulls eye rashes to take to your LLMD's first visit. If not, with magnification, s/he may be able to see some scarring from them - especially since it's been less than a year.
I'm really sorry this has happened to you. Still, as you were infected about a year ago, you still have a better chance than many who have gone years, and decades, without treatment.
As it may take a while to get into a LLMD (and I see you did posted in "Seeking a doctor" for one who takes insurance - harder to find) . . . below are some links that you might consider in the meantime. You still need LLMD, however, until you can get in for full assessment of all tick-borne infections, these links may be of help to you so you can be proactive.
Also, once you make an appointment, you might as what the LLMD's office suggests you do in the mean time - or what reading material they recommend.
Book: Lyme Disease and Rife Machines by Bryan Rosner
=================
And, now I can only imagine you are spinning. So, one step at a time. What I would do as you consider which way to go is get to your closest good natural foods or supplement store and get the best brands on the list below. Once you start reading, you will see why these are suggested. And, you can also use the search feature to find whole threads devoted to most things on the list.
There are web sites for good products and good prices but you need something today. If you want web sites let us know.
For starters, as soon as you can (even today):
OLE (Olive Leaf Extract) Milk Thistle
Turmeric or the stronger extract: Curcumin
Magnesium Glycinate (or Citrate). A good calcium, too. A good multi-vitamin
Fish oil Probiotics (take away from the OLE)
Epson Salts (may be found cheaper in most grocery stores but if you tell a vitamin shop this, they may give you a price break and save you the extra trip)
=============
The Epson Salts are to soak in for a cozy WARM (NEVER HOT) bath. Heat can cause set-backs.
Drink lots of water. Rest as you feel the need. Move some every day but avoid aerobics. Walking with ease, yoga, Tai Chi sort of exercises all good for now but don't force yourself beyond your inner wisdom. Massage would be very helpful.
[ 05-14-2010, 01:42 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Sorry for so many notes. I see that you are working. IF you can, have any fluorescent lights overhead turned off and use table lamps with regular bulbs, not energy saving bulbs.
If they can't turn off lights over your head, can you move your desk?
There is a reason for my suggestion and I have more links but I'm too tired to hunt for them and my guess is you don't want to see any more links.
If you need adjustments at work, ask for them. If not, just do the best to take excellent care of yourself and keep your health concerns to yourself.
I would NOT mention lyme to any of your coworkers but, if needed, inform your human resources director that you need some accommodations due to a medical issue that is not quite clear yet but these are things that should help regarding eye strain ("Eye Strain" covers a lot of territory and eye strain can cause severe fatigue.):
Distraction from sensory stimuli that may be irritating (lights, sound, motion, smells)
A place to take a short nap a couple times a day during your breaks (or on your own time, off the clock)
Do you need a helper, for the time being - to share some tasks or to redistribute others? Do you need some time off or a reduced or rearranged schedule? Keep your safety on the road - and at your job - in mind.
Is there a supportive chair (like a tall back with head rest) that would help? If so, ask for it, or bring one in yourself if you can.
A visor? Etc. (A visor can't block the kind of pulses all around from fluorescent lights but it can help if there are "naked" light bulbs of any type that may be irritating.)
-----
At home, can you get some help for vacuuming, laundry, shopping (or have food delivered)? It is best to stay out of "big box" stores for too many reasons to list here.
No need to answer, just check-list kind of questions.
Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Keebler - I think I am in a similar boat. I tested CDC positive in Nov 2008 with IGM bands 23 and 39 (specific). I had IGG 41. My regular doc gave me the 100 mg doxy for 30 days. I don't remember the specific bite or rash but have pulled a number of ticks off of me over the years as I was a scout and now have 2 active boys that I am always either camping or going to soccer games with. Anyway, I have been the regular route of doctors, but not LLMD's. Each time I retested I was positive on ELISA and either equiovocal or negative on WB.
I am positive I had/have this and the treatment was either not enough, not long enough or not the right combo. My symptoms now are more neurological including: fatigue, insomnia, burning tongue, tingling, nerve sensations, one side of face goes numb and tinnitus.
I have a few LLMD's in mind but also can't get in for a bit. Do you think I still have this and do you think I will have any problems getting help?
Thanks
Posts: 749 | From State full of ticks | Registered: Dec 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- geo - I can only read your note by reposting and adding white space and separating out each new thought or detail cluster, I'm adding bullets for ease of key details. ---------
geo writes:
- I think I am in a similar boat.
* I tested CDC positive in Nov 2008 with IGM bands 23 and 39 (specific). I had IGG 41.
* My regular doc gave me the 100 mg doxy for 30 days.
I don't remember the specific bite or rash but * have pulled a number of ticks off of me over the years as I was a scout and now have 2 active boys that I am always either camping or going to soccer games with.
Anyway, I have been the regular route of doctors, but not LLMD's. Each time I retested I was positive on ELISA and either equiovocal or negative on WB.
I am positive I had/have this and the treatment was either not enough, not long enough or not the right combo.
* My symptoms now are more neurological including: fatigue, insomnia, burning tongue, tingling, nerve sensations, one side of face goes numb and tinnitus.
I have a few LLMD's in mind but also can't get in for a bit. Do you think I still have this and do you think I will have any problems getting help?
Thanks
(geo) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- geo,
I'm very sorry to hear this. I'd say it's pretty much the same advice as for Llama. She or he got just 21 days' treatment but your thirty days' treatment of one abx also falls far short.
If you tested positive before, got inadequate treatment, and now have signs of neuroborreliosis, you don't need another test - you need a good LLMD who will assess you for other tick-borne infections as well as consider how to more completely address lyme.
Finish your homework in finding a LLMD and make an appointment. You might ask that LLMD whey they suggest for now, action, study, etc. I'd also read through the links above for self-care suggestions.
You'll also need to read through links to understand the politics behind all this.
Good luck. ===========
Geo, as you mentioned TINNITUS . . . Specific for LYME patients - lots of details about ears and what can help:
posted
Thank you Keebler.
Posts: 749 | From State full of ticks | Registered: Dec 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Hope all this helps.
Burning mouth can be from cranial nerve involvement (See Bleiweiss article above "When to Suspect Lyme") That can causing some mouth issues.
For me, I had searing mouth for four straight years. Andrographis was remarkable help after a couple months on that. (See Buhner's book above for that).
Also search past threads. Others got relief of burning mouth with abx treatment for lyme or other tick-borne infection.
Would you recommend oil or oregano as a natural abx?
Geo
Posts: 749 | From State full of ticks | Registered: Dec 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- While waiting for LLMD appointment, I would start with OLE - olive leaf extract. It's a cold herb. Oregano is very hot and that can burn.
Oregano is tremendous, it's just more likely to cause burning in the stomach. It does come in tincture form, in a very specific formula. If you can tolerate that, great but many find it too hot.
For capsules, be sure to get gel or enteric coated and never break open in your mouth. It may also be good to take with food. Start with just one, with a meal. Then see how you do.
Good brands that come to mind: for tincture - Herb Pharm for capsules, Gaia or New Chapter.
posted
geo... Positive ELISA's are like gold.. they are known for their false NEGATIVES.
Find an LLMD ASAP. You still have lyme and if you want to be around for your boys, get treated!!! I'm not saying you're going to die (though it's possible).. I mean you will be too ill to enjoy them and take care of them... have FUN with them! So get after it! Don't let ignorant doctors get in your way.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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My last doctor was on the local lyme association board and a neurologist. At least he got me an MRI of brain and spine which were good. But, since I was equivocal on western blot, he would not treat. He seemed more concerned about finding out why I had a CDC false positive (bands 23 and 39 - as far as I know, no cross reactivity) than trying to help me get more treatment. I mean, it was CDC positive.
Thank you all
Posts: 749 | From State full of ticks | Registered: Dec 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Tutu,
She had two bulls eye rashes (and a positive ELISA and telling WB). Why would she ever need a lyme test again? Wouldn't the money be better spent on a LLMD consult and then maybe co-infection tests? -
Posts: 48021 | From Tree House | Registered: Jul 2007
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My story has some similarities with both of yours. I too had several ticks that had been imbedded...when I became ill, I did not have the bulls-eye rash, but since I also had RMSF, my symptoms were quick and severe...so I was treated with Doxy right away. 30 days. Blood tests drawn day 2 of my illness were negative for Lyme and low positive for RMSF already. Second titers drawn 3 weeks later were highly postive for both....so I had a definite new infection. Western blot confirmed the Lyme, so I was taken very seriously by my non-LLMD infectious disease MD.
Now, the ID society says that with early treatment with 2-4 weeks of Doxy, the disease is easily treated. Hmmm....how MORE early could I have been? So, when the Doxy was done, and within days I started having the same neuro symptoms Geo describes above, my ID was shocked, bu reacted by starting me right away on IV Rocephin for 28 days. I felt nearly back to normal during the treatment, but 2 days after they were done, the neuro stuff came back.
That is when my ID dumped me...said it was either damaged nerves due to the disease, or hyper-inflammation/auto immune response, but not an active infection. I had no choice at the time but to trust in that....and thankfully, over time, the symptoms continued to lessen. I won't get into my feelings one way or the other on whether or not I am still infected and my body's immune system is winning the battle, vs the damaged nerves or auto-immune/inflammation theory (BTW, my MRI was negative also)....that is not the purpose of my response. I just wanted you both to know that there is another of us who was treated with the relatively short dose of Doxy, who still wound up with disseminated disease. And that, I have very mild symptoms left, not even all day (humming and fullness in my head, some tingling also in my head).....but that it took several months to get there.
I did eventually see a Lyme literate practitioner, who agreed that my ongoing symptoms may not be due to active infection, and put me on a diet that excluded foods that can cause inflammation....so my ID may have been onto something.....oh, and I am sure that the coinfection of Rocky Mountain was an issue in why I did not respond to the rapid treatment.
Posts: 283 | From where the ticks are! | Registered: Oct 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Most LLMDs suggest special diets to patients. And that can help decrease inflammation and is very important. Especially, a gluten-free diet is a wise chose. Also avoiding dairy, corn and soy to see how you do is a good idea. On top of that, organic foods are easiest on the liver. Generally, a MEDITERRANEAN DIET (minus the wheat and the wine) is good.
Still, as important as it is, diet will not, directly, treat infection. Be sure to see an ILADS-educated LLMD for a full assessment.
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
She had two bulls eye rashes (and a positive ELISA and telling WB). Why would she ever need a lyme test again? Wouldn't the money be better spent on a LLMD consult and then maybe co-infection tests? -
Yes, indeed!! I failed to see that in my skim reading exercise!
No more testing needed....just a REAL DOCTOR...
CDC positive means just that!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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