posted
Wow... vision problems can come from Lyme .. but issues with the feet and all of the mental stuff could loudly point to bartonella. (possibly Lyme as well, however)
Has she been tested for all the coinfections?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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posted
I've had all those problems with Lyme and co-infections.
None have been irreversible, including my vision problems. Who told you this? I don't know if it's the same, but I can try to describe my vision problems.
Peripheral loss, static-field vision (where I see static everywhere like a bad television station), flashes of light, light trails, holographic sights, eye floaters)
All of those are improving with treatment.
I could be wrong, but I don't think you can really find an LLMD based on symptomatic guidance. It's really about identifying the disease and it's co-infections that translates to improvement.
One person can have Bartonella and have severe rashes, but the next person with Bartonella might only have knee or ankle pain. You follow me?
Best to find a well respected LLMD in your area to start treatment right away. Best of luck to you.
posted
I think bartonella can cause all of those problems. I have it, and I've definitely had the pain in the feet, which is a common symptom. I believe that I've also read about occular issues with bartonella as well.
Posts: 3 | From Fairfax, VA | Registered: Jul 2009
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posted
Treating for Borrelia and Bartonella makes good sense say zithro + bactrim. If Bartonella is the culprit the improvement may be quick. Please find help, ask for LLMD at this site.
Anybody else with help finding LLMD in SC?
Beachinit.
-------------------- Ideas not advice. Posts: 448 | From Downeast Maine | Registered: Jul 2009
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posted
Thank you for your posts Wolf and LymeToo. The optometrist has described it as neurological/CNS nerve damage to that part of the eye.
Wolf, I am following you, although time to time I will need clarification. I understand you to mean it plays out differently in each person (depending on ones immune system or weak organ system perhaps)?
Lymetoo, she has not been tested as of yet. Dr B (in Ashville, NC) will be her first "real" appointment with an LLMD.
I do not know much about him or if he tests/treats co-infections, I'm pretty sure though.
The staff was so helpful and compassionate. They squeezed her in at the last minute due to a cancellation and the seriousness of the latest symptom. I am so grateful.
You mention bartonella, someone else said the same thing! I will be honest, I don't know a thing about the co-infections and I am grateful that you gave me some insight as well.
Speaking of Bartonella...is it true that you need to get rid of the co-infections fist before antibiotics are to be effective and secondly, do all LLMD's use rife to treat or not necessarily?
I have been reading a fabulous book "Top 10 Lyme Disease Treatments"...easy and informative read. I recommend it to anyone. It is helping somewhat, especially in the area of those who cannot afford long term treatment.
Hopefully this will help before we go to our first appointment. I will be alone so I think I will bring a recorder.
Thank you for your feedback and suggestions I welcome them all! I hope that you are both well on your way to recovery..
Cassie
Posts: 166 | From USA | Registered: Feb 2010
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posted
Beachinit, I see you are from Maine, a-yuh..me too!!! WOW, so cool. Kennebunk for me, and you? That is reassuring to know it may be quick..ideas not advice I know
Daria, have you had the occular issues yourself? My little girl is only 12 and I am quite concerned to say the least.
Posts: 166 | From USA | Registered: Feb 2010
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posted
mystery - So glad they fit her in for you, when is the appointment?
I know nerve damage from Lyme can heal so let's hope that is the case with her eye.
Wish I had some info about Bart for you but that was one we did not have to deal with!
You will feel so much better after seeing the doctor and having a plan to help her get better.
Best of luck and please let us know how it goes.
Posts: 448 | From minnesota | Registered: Feb 2010
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
bart and Lyme together are most likely the cause of these symptoms I agree. But she is young and will heal!
Posts: 3528 | From US | Registered: Apr 2007
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quote:Originally posted by mysteryillness1970: Wolf, I am following you, although time to time I will need clarification. I understand you to mean it plays out differently in each person (depending on ones immune system or weak organ system perhaps)?
Certainly, the ability to process and rid the infection effectively will depend on the individual. That's not exactly what I was getting at.
I recommend finding a documentary on Lyme disease called Under Our Skin. This has a helpful explanation of the symptoms and infections that are involved in Lyme Disease.
You will find the most common co-infections discussed on this board are Babesia and Bartonella. But, they are FAR from the only infections that can be transmitted with Lyme disease. For example, there are different strains of Babesia, but currently only 2 out of the 11 or so documented strains can be effectively identified through lab testing.
There is also Ehrlichiosis and Mycoplasmas -- among others.
This creates a serious challenge for Lyme treatment, and what makes treatment so individualized for us all. This is also what makes Lyme disease a clinical diagnosis.
An experienced LLMD can provide a treatment protocol based on an individuals symptoms, and will treat symptoms most related to a specific infection; in order to provide relief in the most effective manner.
I do not know much about him or if he tests/treats co-infections, I'm pretty sure though.
This is IMPORTANT information. Please find out, and make arrangements to work with someone who does treat and diagnosis co-infections with Lyme. Those that only treat Lyme disease don't understand the complexity of this disease.
You mention bartonella, someone else said the same thing! I will be honest, I don't know a thing about the co-infections and I am grateful that you gave me some insight as well.
Speaking of Bartonella...is it true that you need to get rid of the co-infections fist before antibiotics are to be effective and secondly, do all LLMD's use rife to treat or not necessarily?
Individual LLMD's have their own school of thoughts or methods behind treating Lyme and the co-infections. If you research, you will find that some advocate treating the co-infections first; and others say you must treat Lyme first.
My limited experience thus far says that treating all the infections at once (in combination therapy) is most effective, but within tolerable limits.
I recommend you seek out some LLMD's in your area, and speak to others about their success with this doctor.
Also, I don't believe many LLMDs advocate Rife Machines so much. At least I haven't heard of many who do -- but, that doesn't mean Rife is not an effective treatment. I have no experience with Rife machines.
posted
My daughter was almost 12 when she developed vertigo and vision issues. Over the course of a month, her one eye turned out, and she was not able to hold it in a straightforward position. The convergence insufficiency was an issue too. She started treated for lyme disease this past August. Her eye is now in a better position, the convergence issues are improved and although she still has tracking issues, they too are improved. Although she can not read without triggering the vertigo and busy visual environments also cause a problem, she has improved. I too had quite a few Dr.'s tell me that the damage was not reversible. But it is reversing. OCD, focusing issues and cognitive decline also surfaced shortly after the vertigo/vision issues, along with other lyme like symptoms. It has not been an easy road for her, but at least she is now on the right one. Let us know how your daughter makes out at the llmd's visit. Sending you positive thoughts!
-------------------- I found my original identity! It has been a bit over 12 years...can't blame me for forgetting my password, right?!!
Member red (Member # 1886) Registered: 26 November, 2001 70 posts Posts: 164 | From NJ | Registered: Jan 2009
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tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
I have taken my young twin boys (age 5) to see a wonderful lyme literate neuro-optomologist in Lancaster, PA. He is excellent. He told me that bartonella in in the eyes can be more serious than lyme.
Along with the foot pain, it does sound like it could possibly be bartonella. I can give you this doc's name if you want to consider going to him. At least, you might want to call his office first to see if he can recommend someone closer to you that would be able to recognize bartonella or lyme in the eye if that is the cause.
Is she being treated for lyme? I would bet $$$ that lyme and coinfections are the cause of her mystery illness. My kids had the same issues before treatment. You need to get her to an LLMD for evaluation ASAP. Even if the tests are negative (as they often are), an LLMD can make a clinical diagnosis and start treatment.
I would not wait on this! Can you get a doctor to give your daughter a trial of Rifampin to see if it helps? Rifampin needs to be given with another abx, such as zithromax or omnicef. I would ask to treat bart and lyme immediately if you can get in to see an LLMD who agrees.
pm me if you want the doc's number.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
Sorry - I just reread the entire thread and saw that you have found an LLMD. That is great news. You might want to read Dr. Burrescano's guidelines to help you understand more about coinfections.
You will need to treat those other infections at the same time as you treat the lyme, if possible. My kids were on 3 different drugs at once, since they had lyme, bartonella and babesia.
LLMD's are not allowed to use rife, since it is not legal for them to do so in this country.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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posted
I just posted this on another thread, but I think the pain in the ball of the foot is due to Borrelia burgdorferi.
The bottoms of my feet were extremely painful for a while and rubbing Venex bee venom ointment on my soles stopped the pain almost instantly. It was miraculous. Shortly after I would herx. If you're not allergic to bee stings you should try it. After that I also used it on almost every other part of my body. It helped me a lot. The herx is pretty strong, so just try it on a small area at first, like the ball of one foot, or both feet if she feels up to it.
Bee venom has mellitin in it, which is highly toxic to Borrelia burgdorferi.
Topical treatment definitely helps, and I used it in addition to my oral antibiotics. Dr. Stephen Barthold at UC Davis did a study which showed that the highest concentration of Bb was found in the skin of the mice they studied, and from the way I herxed after applying Venex topically, I believe that's true.
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