Is it possible to have Lyme and at the same time no reaction to 2-years abx treatment? And there wasn't response on herbs too.
My tests for babesia, mycoplassma and erlichia were positive and for babesia and bartonella were negative.
My symptoms are (mostly neurological): brain fog, constant headache, derealization, depersonalization, constant runny nose, "weak" muscles and bones, stomachache, fatigue.
Posted by Keebler (Member # 12673) on :
- The forest ranger in the documentary "Under Our Skin" saw no measureable improvement until about the 3 year mark. Then, by year four, much improvement.
Pamela Weintraub's journey also took a while. Be sure to read "Cure Unknown" that detail her experiences and those of her entire family. -
Posted by Keebler (Member # 12673) on :
- If possible, for emotional and psychological matters, consult with an ILADS educated LL therapist.
Be sure to share with your LLMD all your symptoms as they are more likely to know if, when to reach to other experts for adjunct care . . . and just who might be best in your region, too.
If they are not well educated about lyme and other tick borne infections, they will not have a clue as to how to help you and could hurt. And, they are more likely to slap wrong labels on you that don't really do you justice.
You mention "derealization, depersonalization" - be very careful with those terms as they do not mean to doctors what we feel they might to us if we feel out of sorts. Another term that some might use in way that will clobber them is agoraphobia.
derealization, depersonalization are very harsh psychiatric diagnoses and if you even mention them to a regular doctor and they wind up in your file, your medical care could be toast from here on out.
Most doctors are all too willing to slap that / those labels on someone with chronic infection and then just toss drugs and never explore what is really going on or what exactly is the patient trying to convey.
Detail about what all / what else is going on to cause some of us to shy away from loud events or feel like we are in the Twilight Zone are discussed here. Often, IMO, it's inner ear involvement (that stomachache could be sign of inner ear turmoil)
on top of the toxicity that lyme brings to the table. Toxicity can make the best of the bunch turn to Jell-O. Really. Liver support is vital.
Adrenal, nervous system, vestibular (inner workings of the the ear / balance), and cardiac involvement discussed. What might really be beyond quick labels? What helps? -
Posted by Keebler (Member # 12673) on :
- constant runny nose - if you live in the west, the smoke from all the fires can be bad. And that can travel and now covers about 1/2 of the country, actually, even if not seen.
Dairy can also do this. In addition to a gluten free diet, a dairy free diet is good to explore.
Also, be certain that you are seeing the best ILADS educated (and beyond) LLMD you can. Do they follow Burrascano's template with specific changes for your case? Are they assertive enough? And do they have the best support, too? All vital questions. Your liver support may need some tweaking:
[this type is excellent for those with lyme as there is no sudden twisting of the spine or neck - which should never be done with some who deals with lyme]
Olive Leaf extract (Seagate) helps me with runny nose . . . while I'm gluten and dairy free, the summer smoke is driving my nose bonkers. Glad the winds have shifted but, really, much of the nation has smoke in the air so OLE might just be an added help.
Also consider that in summer, the heat can keep pollution hovering over us and vehicle pollution also peaks.
Consider indoor pollutions and also fine particulates from anything fuzzy (bathroom mats, etc. Cork is best. Banish fuzzy items).
www.AirNow.gov - to check your air quality -
Posted by Keebler (Member # 12673) on :
LL ND links here, too, that explore other options. Just be sure whatever you choose is assertive & direct, with support. -
Posted by ukcarry (Member # 18147) on :
Dr H's book that came out a couple of years ago discusses many factors that can contribute to apparent treatment failures.
My latest approach is to have 23andme analyse my DNA and I am about to see a practitioner who will work with me on tailoring supplements etc to suit my genetic profile. Is this something you have looked into?
Posted by adamoo (Member # 43659) on :
I haven't heard about this. What does such treatment look like?
/ I couldn't log in yesterday. It wrote that my IP was banned. This is not the first time such thing happens. I sent an email to [email protected] but haven't got any response yet...
Posted by ukcarry (Member # 18147) on :
I have had the same message in the past about my IP being banned. It has always got sorted OK, so don't worry.
23andme is a company that analyses your DNA from a saliva sample and produce an ancestry report,along with the raw data of your genetic codes. Legally, they cannot interpret your raw data to give health advice, so you upload the raw data to a site like livewello.com
You end up with a list of your genetic mutations under different headings and you can then get advice from someone trained to suggest appropriate supplements. If, for example, you have certain mutations in your MTHFR (methylation) gene, then you may have some detoxification problems. You also may have problems converting some B vitamins into their active forms, so the genetic information can help you and your practitioner to make choices of supplementation that should help you to function more effectively.
This is still a relatively new area, so there is lots more to learn about it. Some people do not notice improvements, but for others this information has proved to be very helpful, especially if you work with an experienced practitioner.
Since I am only just starting this approach, I cannot recommend it to you personally for the moment, but in principleI believe it to have potential.
Posted by Brussels (Member # 13480) on :
Me too. Sometimes they do make mistakes!
UKcarry has a point: no improvement is hard to tell. In my case, if I didn't take binders, LOADS OF THEM, like eating MSM powder in spoons many times a day + chlorella half handful + electrolytes etc...
... I didn't feel any improvement either. On the contrary, I felt like going backwards, more fatigue, more liver pressure, less quality of life, more brain fog etc.
I didn't do any test to see if I'm a slow detoxifier, as for sure, I was! With RIGHT BINDERS and the RIGHT AMOUNT, my life went on fine for a couple of hours after killers, until I needed again more binders. And so on.
With binders, my life went on almost as though I was not sick, despite having multiple active infections from ticks and parallel infections. The problem was that I needed those binders, almost like I needed air to breathe.
Posted by LisaK (Member # 41384) on :
your sx could also be from mold??
I have same sx and have been looking into the mold aspect. very similar to lyme sx.
Posted by sixgoofykids (Member # 11141) on :
quote:Originally posted by adamoo: / I couldn't log in yesterday. It wrote that my IP was banned. This is not the first time such thing happens. I sent an email to [email protected] but haven't got any response yet...
Are you in Europe? Sometimes we get deluged with SPAM from Europe and it results in banning IPs from the area. I'm glad you got back on.
Posted by sixgoofykids (Member # 11141) on :
I'm chelating heavy metals right now (again) and have started taking Takesumi for detoxification/binding. It's amazing at binding the toxins. I felt better within a couple days. If you're having trouble detoxing, maybe finding a good binder would help.
If you're having back trouble, you might get it looked at, it may not be Lyme related and it could cause nerve symptoms.
Like LisaK, I, too, had mold and the symptoms were bad.
Posted by CherylSue (Member # 13077) on :
Hmm. You need to find the correct antibiotic and dosage for your strain. I tried several abx, and high dose Ceftin or its generic cerfuroxime axetel was the best for me.
Posted by adamoo (Member # 43659) on :
Yes, I'm from Europe and problems with logging happen most of the time.
Actually, I've had Doug Coil Machine for some time. I had bad headaches after some frequencies (usually left sided), but it's hard to say if this works or not... There are a lot of frequencies only for Lyme, and there we have babesia, mycoplasma, bartonella. etc.. frequencies.
Also, I've been interested in treatment with RSO Oil, but it isn't simple to buy/make. Maybe I'll give it a try in the future...
Posted by Brussels (Member # 13480) on :
Are you from Poland? There was a medical doctor from poland here, long ago. He was a neuro surgeon and his whole family had lyme.
He was severely affected by lyme to the point of being forced to be at home, and lost his job etc.
I talked to him recently, and he's back working as a medical doctor, his son is doing great at school and his wife just had some skin rashes... from her husband's 'experiences'.
they are not totally HEALTHY, but I don't think they are fighting lyme like in the past (as they are back to life again). If you are interested, I may find his email address somewhere...
He and his family used many treatments, and one of the treatments was also photons and nosodes (like my daughter and I used). He also did Rife and really, many other things.
He had fully free access to abx as a medical doctor.
It was NOT abx that made him turn the page of lyme, for sure.
Posted by adamoo (Member # 43659) on :
Yes, I'm from Poland. How did you know?
And of course I'm interested. If you could send me his email, I would be grateful.
![[Smile]](smile.gif)