I am wondering....I have seen so many people say that they had symptoms but never had a positive test or it took 4 or more years to get one.
How do you know if you are treating Lyme? What if you take abx & see no improvements? Has anyone ever come to the realization that it was never Lyme?
Just curious.
Posted by luvs2ride (Member # 8090) on :
Hi Erin,
I question if Lyme is my problem. I have Igenex test proof I have had lyme even by CDC standards, but it is inconclusive as to whether I have lyme now.
Meanwhile I do have confirmed systemic yeast, parasites, 3 infected root canal teeth and heavy metal toxicity any one of which can cause the same symptoms as lyme. Many feel lyme is behind it and that may certainly be the case. At the moment, I am working on eliminating these known issues. Afterward, I will see if I am still symptomatic and if so, I will assume I have lyme.
Posted by lou (Member # 81) on :
This is the reason for differential diagnosis, to see if the symptoms can be explained in other ways. If you have reason to believe it might be something else, then that should be pursued, just to be sure. It is also the case that sometimes people have lyme + something else. Ticks can bite those with other ailments as well.
So, there are several possibilities: Lyme Something else Lyme + something else
The problem with lyme diagnosis is that it mimics other ailments (the great imitator), plus it messes up various systems in our bodies and produces puzzling results from other testing, as in thyroid.
If you go to a lyme specialist, they will consider the whole shebang. If you go to most other docs, they will not consider lyme.
One possible way to sort this out, even with a non-lyme doc is to look at coinfections (even with less than stellar tests available). If you are found to have ehrlichia, anaplasma, bartonella, or babesia, then you may also have lyme, as ticks carry all of these and sometimes transmit multiple types of germs. Most docs have never heard of any of them, unfortunately, and will not bring up the subject. They also know bartonella only from cat scratch disease, not from ticks. So, you would have to request a search for coinfections, and name them. The CDC website, although not very good on lyme, does contain sections describing the other tickborne diseases, and could be printed out for your doc.
Posted by LYMESCIENCE (Member # 9259) on :
Thats good advice Lou. I'd follow what he said. Think co-infections (the drugs are not the same as those for Lyme), think that maybe you are not treating Lyme appropriatly (think IV instead of oral), think you may have Lyme, co-infections, and a co-existing disease which hasn't yet been diagnosed, but such disease is unrelated to ticks, or you have some other disease (the diagnosis of fibromyaglia or Chronic fatigue syndrome is not good enough for an alternative diagnosis)
Posted by Bothrops (Member # 7393) on :
Hey Erin, I am in the same boat. I was clinically diagnosed and have not benifited at all from a year on abx, including IV. I knew this from the begining and was lucky enough to live close to an llmd that accepted medicaid. If I would have had to pay I would have never saw him. I dont know what I got going on, doubt it is lyme. I will continue to take abx, problem is abx causes yeast which also has similer symptoms.
It is real confusing, however there may be a blood test for MS/CFIDS withen the next couple years. That would eliminate alot of confusion.
Posted by LYMESCIENCE (Member # 9259) on :
Here is another tip for those who are wishing to find concrete evidence of Lyme vs other diseases. If you have nuerological Lyme, and are unsure whether its Lyme or not, see if you can get some testing done no your Cranial nerves.
CFS and Fibromyaglia don't affect the cranial nerves, while many of us with Lyme disease do have defects in our cranial nerves.
Posted by LYMESCIENCE (Member # 9259) on :
another tip would be to get a SPECT or PET scan. I personally recommend PET, but the key is that Lyme can be seen in quantifyable ways, its just that it sometimes can take several tests before you find "objective" problems.
Posted by cantgiveupyet (Member # 8165) on :
same with me....im really starting to suspect yeast.
My symptoms are all in my plevic region and weight loss, hair loss.
Im going to seek out a dr to test for these. ABX make the yeast unberable for me to the point where i cannot walk im so sore.
going into this i thought lyme made sense, but i always thought maybe yeast.
I feel like im back at square on again.
Posted by pattilynn (Member # 8065) on :
I struggle with this every day. I have all neuro symptoms and really bad. MS type symptoms all day, every day. I had Igenex testing which showed one positive band and 2 IND bands.
I have had every known neuro test available, even a spinal tap which was completely normal. It was checked for lyme as well, negative (not Igenex).
I don't know what I have but it's really, really bad.
Posted by Foggy (Member # 1584) on :
No, more like it wasn't just Lyme. It was bb, Babs, Bart, Mycoplasma & metals.
Posted by cawpo (Member # 5744) on :
"If you have nuerological Lyme, and are unsure whether its Lyme or not, see if you can get some testing done no your Cranial nerves. "
What are those tests? What would it show from Lyme? Thanks, Cheryl
Posted by cawpo (Member # 5744) on :
"If you have nuerological Lyme, and are unsure whether its Lyme or not, see if you can get some testing done no your Cranial nerves. "
What are those tests? What would it show from Lyme? Thanks, Cheryl
Posted by Nal (Member # 6801) on :
I question it all the time. However, I have positive test results from Igenx and I had a Spect scan done which was indeed abnormal and consistent with Lyme disease.
Nancy
Posted by pattiecake (Member # 6424) on :
FOr me I had lyme with lyme symptoms and a terrible terrible itchy rash that for 3 years drove me to the brink. Often getting infected with strep due to the itching and scratching.
I also had many lyme symptoms but was not sure if the rash (by far my worst symptom) was lyme or not.
Went to MANY MANY derm ducks who just wanted to put me on steroids (and did)
Went to an llmd who did a great job of putting me on kick butt combo's of meds (he was not sure the rash was lyme but suspected it was).
My lyme symptoms cleared up but my rash was very persistent. WOuld get better upon switching abx but soon would re-appear.
I decided on my own to go off lyme meds as I had been symptom free for 6 months.
REad a few books on Oil of oregano and olive leaf extract and decided they were VERY broad spectrum and would cover bacterias,fungus, viruses all in one and started taking them along with grapefruit seed extract.
I started in March and my rash is all gone now. WHOPEE! first time in 3 years. I believe it was yeast.
It was/is badly entrenched in my system as I tried to go off of the oil of oregano and slowly I started to get little red itchy bumps.
It will take awhile I guess.
I also take pro-biotics and am on the no sugar,no carb (x-cept salads and veggies) diet.
so yes it can be a combo and hard to differentiate.
I had to figure it out on my own and that is VERY frustrating but I am very lucky. good luck, pattiecake
Posted by going_crazy79 (Member # 7887) on :
i am really scared about this too. i took long term antibiotics (1.5 yrs of doxy (200 mg daily) which a dermatologist prescribed for acne. i stopped taking them about 10 or 11 months ago and i have been sick ever since.
it took me three months to learn about candida so i just kept getting sicker and sicker. then i went on the candida diet finally and have been on it for 7 or 8 months with a few cheats over the holidays.
well i am still not better. i am a lot better than i was last year but i still have waxing/waning symptoms, severe food allergies, haven't had my period since january, and lots of other weird unexplained things.
i have been bit by tons of dog ticks and one tick when i was 16 that was very small and we didn't know what it was. i am starting to think i have lyme disease on top of the candida. the candida seems to be gone yet i am still sick.
what do you all think? i am terrified to go back on antibiotics cause i just spent so much time beating candida. but i am still really sick and there has to be something else wrong!
Posted by minoucat (Member # 5175) on :
To add to what Lou says --
I've come to see it as a constellation of diseases/dysfunctions caused by
- Bb itself
- The known bacterial-type coinfections --bart, babs, mycoplasm, erlichia, etc. etc.
- The unknown coinfections and strains of Bb
- The viral infections that are either transmitted by ticks or that are opportunistic and take advantage of a weakened immune system to flourish.
- parasites transmitted by ticks or otherwise
- Physical and neurological dysfunction induced by LD/co and possibly not resolved even after the infection is gone, including problems with the endocrine system, toxin build up, and so on.
- Any other inherent condition (like hypercoagulation, inability to clear toxins, leaky gut, allergies, overactive inflammatory response) that could be worsened by LD and that might be interfering with treatment. Some of Riversinger's recent posts address her struggles with this and have wonderful info in them.
- Other illnesses in addition to LD that may be worsened by LD, and that might mask your resonse to treatment.
If what you're doing isn't working to some degree after 6 months, definitely change it. In my experience, one MD, LL or no, just doesn't have all the answers. It's frustrating, discouraging, and enraging to have to keep searching for someone who can help the particular thing that's wrong. But you gotta.
I've struggled for years with whether I had LD or not. I've also addressed the heavy metals and parasites. Step by step tx for the coinfections concurrent with Bb tx has really helped, after years of battering Bb only; now I'm checking into my virus load.
Best of luck.
Posted by lymeHerx001 (Member # 6215) on :
For me its either Lyme, or another bacterial infection.
Had a terrible herx from BIAXIN. Doxy is also terrible for me now.
So mucch pain , depression, and fatigue.
If it isint lyme then explain the reaction I have to certain anti-biotics.
I get a classic herx. Increased pain, burning skin... etc
How else would one explain it? This is what convinced me, its either lyme or another infection which I will call LYME untill we really know 99.9%
Posted by luvs2ride (Member # 8090) on :
going_crazy79
You might try the herbal protocol in Stephen Buhner's book "Healing Lyme" as an alternative to abx.
Posted by going_crazy79 (Member # 7887) on :
does anyone really have success with herbal methods? if so, then why are most here on prescriptions?
Posted by lightfoot (Member # 2536) on :
Hi!!
Don't we all woish it weren't Lyme and the tick borne diseases?!!!!!
BUT......now I've got something to treat as opposed to a lot of "syndromes"....diagnoses which ONLY treat symptoms and have no "known" cause. So..I'm glad to going after the cause.
The Lyme/tick borne treatments can put us through hell. Remember what Churchil said, "When you are going through hell, keep going."
Treatment can take a good amount of time. I've been in treatment since 9-99. I went untreated for eons. It took at least three years to see real positive results.
I say to myself several times a day...."hang in there!".....that's what I say to you too.
Healing smiles and laughter...lightfoot Posted by liz28 (Member # 4946) on :
Sure. I was disabled for four years with "Lyme," then started taking ketek with omnicef, saw a rapid decrease in Lyme symptoms, and was able to categorize the remaining symptoms as bartonella and babesia.
Posted by seibertneurolyme (Member # 6416) on :
going crazy,
Many on LymeNet are on both antibiotics and herbs. In my opinion combining several treatment methods is the best way to beat these bugs.
Hubby is currently taking meds for Babesia, herbs from the Healing Lyme book at low doses and oral colloidal silver (Argentyn 23). As the saying goes, "Why put all your eggs in one basket?"
Olive leaf extract alternating with oregano oil can be very helpful with Candida or other bad G.I. bacteria.
In answer to your question, "How many herbalists do you know?" They are even harder to find than LLMD's in my opinion -- if you go that route you are usually on your own.
I feel that the herbal protocol for Lyme in the Healing Lyme book is pretty good -- not so sure about the protocol for Babesia and Bartonella.
If you stick around there are frequent discussions about herbs such as Cat's Claw versus Samento. Also artemesia versus artemesinin etc.
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